Good Grief: The Healing Power of Communal Mourning

I’ve written about grief on occasion here, and usually I get comments along the lines of, “I’m so sorry this is so hard for you.” Now, I always love to get comments! I love to know people are reading, and I’m interested in how my posts affect them and what they have to say. And I appreciate their heart-felt sympathy. At the same time, these comments have surprised me because I’ve been so relieved and happy that I am finally able to grieve. It sounds strange, but to finally be able to blog about my grief and to actively grieve is a wonderful gift. I celebrate it.

I think some of the dissonance between how I feel and how others guess I feel might have to do with a few factors, maybe in combination:

• the difference between the noun (grief) and the verb (grieving)
• my perspective on grief, which is at odds with our American culture’s relationship to grief
• the fact that the ride I’ve been on in the last few years is not one most have taken. (Thank God.)
• how I am coming to experience and express emotions since I started practicing Nonviolent Communication (NVC).

What do I mean by the ride I’ve taken? Well, I experienced a truckload of losses in a short time, and both because there were so many things to grieve, and because I was in a fight for my life, and because the very losses I incurred severely reduced my resources for coping and grieving, I was just way too overwhelmed to process it all. (If you know my story, you can skip the bulleted list below.)

Beginning in November 2007 and culminating with Gadget’s death in November 2009, I suffered the following losses:

• basically overnight, due to Lyme disease and other tick-borne diseases, I lost the ability to speak, move my limbs, sit up unaided, tolerate sound/touch/light/movement, which then involved the loss of communication and of my independence and freedom to go to the bathroom, get out of bed, feed myself, bathe, brush my teeth, etc., without a great deal of assistance
• along with all the above was intractable pain, both body pain and continuous migraines. Pain isn’t usually described as a loss, but it’s horrible and traumatic, and it definitely involved loss of joy and ease and all sorts of things that are hard to put into words
• also along with this, I experienced major mood and behavior changes (due to neurological damage from tick-borne diseases), which actually left me feeling like I had lost my self. I hadn’t even thought it was possible to lose myself before, and the fact that I could be taken over like that by feelings I hated and couldn’t control was terrifying, painful, and a source of shame (compounded by the way others reacted to my moods and behavior)
• loss of important parts of my mind/cognitive functioning, including interest in writing, sex, or any form of creative expression
• all this led to serious relationship damage with virtually everyone in my life, and the loss of trust and safety I had previously felt
• then I went through a natural disaster which I’ve written about before, which caused me PTSD and further losses in my sense of safety in my home and in the world
• immediately following that, my best friend of 16 years (and my main interpreter) ended our relationship, and her sister, my other best friend, and I experienced a tremendous strain in our relationship, so that we barely spoke
• one of my best friends, Norm Meldrum, died
• my therapist terminated with me
• other friends left me or died
• Gadget, my service dog, was diagnosed with lymphoma
• Gadget died of mast cell cancer
• my remaining best friend finally ended our foundering relationship

That’s a crapload of loss. In two years, I lost almost my entire social network and family of choice, my service dog, my functionality, and virtually any feelings of self-worth. Most of the meager sense of self I had was tied up in being Gadget’s partner. He needed me. We were a team. He was not resentful about doing things for me, and it was my mission in life to save him, to keep him alive. I believed that even if I didn’t matter to anyone else, I mattered to him.

And then he died, and part of me died with him. It was too much. I couldn’t bear it. Something in me broke.

When I sought out support, people kept telling me to journal about him and to “let my feelings out,” to cry. But I couldn’t. I physically couldn’t journal (by hand) for the most part, and when I tried, when I could type, I didn’t know what to write. Nothing came out — and I’m a writer! I tried to cry and nothing happened. I just felt blank. I felt empty. The other people on my dog grief list talked of crying every day, many times a day, and I’d think, “What is wrong with me? Did I not really love Gadget? What kind of cold-hearted freak am I?”

There were two times I connected to my grief over losing Gadget, and they were so horrible, I can’t describe it. It was like being thrown into a bottomless black pit. I felt like my heart was squeezed into the size of a walnut. The emotional pain was so bad, I wanted to die. None of this feels adequate to describe the experience. If my feelings were a painting, it would be Edvard Munch’s The Scream.

I couldn’t go back there.

So, for a long time, I just felt closed off and careful and scared. This was grief (the noun). Grief can take any form — anger, sorrow, numbness, depression, anxiety, a sense of unreality, etc.

My grief was mixed up with the judgements I’d internalized based on what people said when they were upset with me. I didn’t believe I could connect with anyone or open up to anyone because I thought I was a horrible, selfish person — that’s what my friends told me when they ended our friendships — and that if I revealed any of my true feelings, people would be disgusted and angry and see me for the monster I was, and they would leave me, too. And because I couldn’t grieve, I couldn’t feel Gadget. And because I couldn’t feel him, I couldn’t grieve him.

And now, things are different. They are changing. One big difference is that I’m not dying anymore; I’m less ill than I was. I also am not experiencing mental illness anymore, which is a tremendous relief, as it felt horrible to be in so much psychological pain and to not be able to trust myself or my perceptions.

The other thing that has changed is that I’ve been studying NVC. It’s hard to describe just what a huge impact this has had on my life. I started taking classes by telephone, taught by and for people with chronic illnesses and disabilities, about a year-and-a-half ago, though it feels longer. The biggest gift, at first, was that I had friends again. I was part of a community, and I wasn’t a freak or “too needy.” Everyone in my classes had really tough lives; many of them were in worse situations than me. I often felt helpless and heartsick at what they were going through, but I also appreciated that I had something to offer, that just being a supportive presence was something. It felt good to be contributing to other people again. Also, I was shocked to discover that people seemed to like me. For quite a while I thought I was hoodwinking them into thinking I was a nice person. Eventually I started to think I might not be the monster I thought I was.

Then, as I practiced NVC more, I started learning how to apply it to myself and others. NVC is about empathy and compassion. It’s about learning to recognize judgements of ourselves or others and how to translate those judgements into an understanding of ours’ or others’ feelings and needs. I started to realize just how much I judged myself — all day, every day. I started to be able to give myself compassion. I started to be able to accept others’ compassion for me. Very, very slowly, I have been able to communicate better with the people in my life, to be less triggered, to take things less personally.

A turning point came for me on October 2, 2011. There was a 50-hour-long NVC empathy phone call. It was international, in celebration of Gandhi’s birthday. I would call in and mostly listen for a couple of hours here or there, but I felt a need building in me to be heard, to express the grief that was rising up in me. Eventually, I felt like I could hardly breathe for choking it down.

I asked for empathy from these people who were strangers, from all over the world. I was terrified of doing it, and yet I knew I needed to do it. It was a very vulnerable experience. I felt scared and naked and anxious. I was afraid they would all be disgusted by my neediness, that they would see me as selfish and pathetic. But I was desperate to share my grief.

I started talking about Norm and Gadget, and I cried and cried and cried. People made empathy guesses. People gave me support. Nobody judged me. Everyone was grateful to me. They thanked me for sharing myself with them. They thanked me for my vulnerability and authenticity. They were moved. Supporting me had met needs for them. I couldn’t believe this. I had to ask the facilitator, “Why?” How? How could my outpouring of pain possibly feel good or useful to anyone else? I don’t remember what she said, but I remember that I believed her. Through this haze of pain, although I can’t remember most of what I said, and even less of what was said to me, I felt like I was being given a second chance at life.

It was so hard to believe that I gave anything to anyone that night, and yet, everyone was being honest. Rather embarrassingly, I keep “running into” people on NVC teleclasses who remembered me from that night. Some people have told me that it was the session that touched them the most.

I have to believe them, because one of the aspects of NVC I love the most is the honesty. I have not run into any game playing. People say what they feel or need, even if it might be awkward or not in line with cultural norms of politeness, but in a way that is compassionate toward themselves and others. They are not being mean; they care about others’ feelings, but they recognize that their needs and feelings are nobody else’s responsibility. There is no blame. It’s like the anti-guilt trip.

That call was life-changing. I felt like a hundred pounds had been lifted off my shoulders. I knew I needed more of that. The opportunity to grieve in community.

That hour of sobbing my heart out to a big group of strangers has had a big ripple effect in my life. I finally believed I was on the road to grieving — the verb. To not just be mired in grief, but to take an active role in my grieving. It hasn’t been smooth or clear or easy. A lot of the time I still get stuck and shut down. It’s taken me quite a while to learn how to grieve, and I’m just beginning. I have so many things to grieve, it will probably take many years before I have touched it all.

For now, most of the grief that’s coming up is for Gadget and Norm. I am hardly ever able to grieve by myself. The exception is occasionally when I’m writing a blog post like this one, feelings will come up as certain realizations hit me when I type them. Mostly, however, I grieve with other NVC people. That feels safest to me. That is where I can express my sorrow and have it welcomed and held with tenderness. I get empathy and do not get judgements — no “shoulds” or suggestions or advice. Just deep listening and connection. And then, when I get off the phone, after crying my heart out, I feel good. I feel lighter.

I sometimes feel happy again. Not just okay, but happy. I had forgotten what it felt like. At the check-in for an NVC class a few months ago, we always give a feeling and a need we’re having in that moment. I was groping around for the feeling I was having: Peaceful? No. Calm? No. I couldn’t put my finger on it. It was . . . not unhappy. Then I realized, I was happy! I felt almost guilty announcing that!

This is one of those counterintuitive things I keep having to learn over and over again, all my life. To get to the joy, I have to go through the grief. After sobbing my guts out, I’ll be able to laugh.

I have not yet learned how to grieve by myself. I think I need to keep being in the safe space of other empathic people who welcome my grief to feel safe enough to be that emotionally raw. I am afraid of grieving by myself, because I know that abyss is potentially there, and I could fall in. With others, I feel held. I can let the wound bleed, but I don’t have to worry that I will bleed until there is no life left in me. I can just let the wound of grief be cleansed by the outpouring and let the scar grow back over it and feel a little bit more healed.

I celebrate that I am able to grieve, that I am able to connect with my feelings about Norm and Gadget — not just cardboard cutouts of feelings I imagine I should have. I celebrate that there are people in my life who are not just willing, but eager, to take these journeys into my heart with me. I celebrate that I am able to feel a fuller range of emotions now — joy and laughter and hope, along with sorrow and grief.

I think our culture is not comfortable with grief. It’s messy and unpredictable and raw. We don’t know how to “fix it,” so we try to shush it away. But really, it is a way to celebrate life — that we are still here to grieve. That we suffer is part of being human. So please, congratulate me — I’m grieving.

– Sharon, the muse of Gadget (very much alive in me as I wrote this), and Barnum, sweetest SDiT

P.S. If you are a person with a chronic illness or disability who might be interested in an introductory class on NVC by telephone, Marlena, my teacher, has spaces available. Contact information and a basic description of the class are here, although the dates and times are wrong. (This is an old listing.)

Karyn, My Human Partner in the Assistance Dog World

The theme for the upcoming Chronic Babe Carnival is “Best Friends,” and the theme for the upcoming Disability Blog Carnival is “Community.”

I thought I couldn’t participate in either carnival, because I no longer have friends in real life/”meatspace,” and, while I have many online communities, they are quite diverse and often don’t overlap. One of the communities that is newest for me — and a great source of joy — is the assistance dog blogger community.

Although I have been training and partnering with service dogs since 1999 and been a member of — and written articles for — the International Association of Assistance Dog Partners for many years, because my multiple chemical sensitivity (MCS) prevents me from attending any assistance dog (AD) conferences or events, or even meeting other AD partners in my area, I never really felt a part of the AD community, until now.

Now, especially with the success of the Assistance Dog Blog Carnivals, I have connected to AD partners from all over the world, with all types of ADs, both program dogs and owner-trained dogs. I feel a special closeness to several, such as Kali of Brilliant Mind Broken Body, who, like me, is a disability-rights activist as well as service-dog partner, and L-squared of Dog’s Eye View, from whom I learned the daily ins-and-outs of training with a successor dog at a guide-dog school, as well as Ashley, Brooke, Carin, Andrea, and too many others to name. I feel I have a home in the assistance dog world, at last.

However, when I think about who has been there for me since the beginning, and with whom I have shared the most, there’s no doubt that it’s Karyn, of Through a Guide’s Eyes. Karyn has been my best, and often my only, assistance dog friend, for over a decade.

Karyn and I have a lot more in common now than we did when we first met online, most of it associated with loss, unfortunately. But sometimes the strongest friendships are forged out of hardship, and I do believe that one of most compelling aspects of our relationship is how we inspire each other to keep fighting.

We met on a list for people training their own ADs in 1999. I had never trained a dog in obedience or assistance work before, and I had serious doubts that my bouvier des Flandres, Jersey, and I were up to the task. I met a lot of people on the list who provided information and encouragement, but it was a big list, sometimes contentious, and often I felt overwhelmed, lonely, and scared.

Karyn soon started her own partner-training list, which is typical of both of us — if we can’t find what we need, we organize it ourselves — and invited me to join it. That’s when we became friends.

Back then, Karyn’s major disabilities were the ones she was born with, incomplete quadriplegia and hearing impairment, as well as a new one — vision loss — which she expected would progress. She had some stable disabilities and some unknowns, but she was full of energy, very independent, and went out a lot.

Her primary need was for a dog who could help her be safe and mobile in the world with decreased vision, as well as alerting her to sounds and providing physical assistance at home. Her assistance dog, Chimette (Met for short), was a border collie mix from a shelter. Karyn ended up going the owner-training route for the same reasons as me: No program would take us.

Met and Karyn, showing off their teamwork.

In Karyn’s case, this was because of her multiple-disability status. She spent years on a program waiting list for a hearing/service dog. When she realized she’d need guide work, too, and decided the program might never take her on anyway, Karyn took matters into her own hands.

In my case, programs would not accommodate my MCS. After being rejected by the only program that seemed like a possibility, I, too, decided to go it on my own.

Because our disabilities were so different, so were our lifestyles and the tasks we needed our dogs to do. I had MCS and chronic fatigue syndrome/mygalic encephalomyelitis (CFS/ME). I was ambulatory within my home, but had to spend most of my time resting. I used a mobility scooter on the rare occasions I went out. I had to avoid going out as much as possible, because exposures to chemicals used by the rest of the world made me sick. I wanted a service dog to help me save energy and avoid exposures at home, and to assist me in occasionally going to the store myself, something I hadn’t done in years.

I also needed a hypoallergenic dog that was happy to spend a lot of time snoozing. Karyn needed a dog who could learn a huge number of skills and keep sharp for extended periods. Therefore Karyn adopted Met as an older puppy from the shelter, and I got Jersey, a phlegmatic five-year-old former show dog, through breed rescue.

Jersey and me in her golden years, circa 2003

[Photo description: Jersey, with a silky black coat and cropped ears, sits in profile, her head turned toward Sharon. Jerseys fall covers where her right eye would be.]

The beginning of my relationship with Karyn was mostly that of a mentorship. She had the experience I lacked, and I was eager for information and support. She helped me find books and articles on training your own service dog (SD), places to buy SD equipment, and encouraged me to try new methods (including a weird new tool called a “clicker,” which I resisted!). Perhaps most important, Karyn helped me believe in myself and Jersey. She both encouraged me and led by example. After all, if she could train her first assistance dog herself, and teach him guide, hearing, and service skills then what was stopping me?

Not too long after I joined Karyn’s list, she developed MCS, and our roles reversed. Suddenly, the ways she’d structured her life around her other disabilities were thrown into disarray by the limitations imposed by MCS. In this new realm, I was acting as a resource and support, providing information and referral for fragrance-free products and instructions on how to detox and avoid exposures, and offering a virtual ear for her grief and frustration.

Another unfortunate experience we soon came to share was having SDs with significant health issues. Met had a number of health issues, including allergies and sensitivities, as well as epilepsy, all of which Karyn managed with incredible care and dedication, reading every book, researching any treatment, and joining any list that might help her assistance dog stay as healthy as possible. He struggled with health issues all his life, and it was a balancing act that Karyn was never free of until he died.

Met and Karyn set off to do errands.

In my case, soon after Jersey graduated from service-dog-in-training to SD, she developed glaucoma, and lost an eye. However, like Karyn, I decided to see what my dog wanted to do — retire or continue working? She chose work. Of course, Karyn was supportive.

Having another SD partner in our lives who understood MCS also came to be valuable to both of us. We could discuss how to make a dog shampoo that was safe for us or gripe about strangers who got their fragrances on our dogs. Karyn provided true practical assistance to me, as well, combining her incredible ingenuity, craftsmanship, and generosity with her care for my health: she constructed and mailed me SD equipment designed especially for my needs. One example is this amazing SD leash, which connects to a waist belt she also made.

Of course I asked for black. It goes with everything!

Knowing that the materials were coming from a non-scented environment, and having them arrive wrapped in aluminum foil (to prevent contamination during shipping), was a huge bonus.

When I moved into a new home and needed to modify the door handles, Karyn created and mailed over twenty door-pulls for Gadget to use to open and close my doors (closet doors; bathroom, bedroom, and refrigerator doors; doors to and from the outside), and later, pulls for cupboards and drawers, too.

I have door pulls to match every type of door or drawer, color-coordinated with the decor of each room!

Then, I got Gadget, a one-year-old bouvier rescue, to train as successor to Jersey. By then, Karyn and I both had a lot of wisdom to share with each other. We both had converted to clicker training. We both had trained our first dog. Unfortunately, Gadget, like Met, was plagued by lifelong health problems. However, also like Met, he was a fantastic service dog. Met was Karyn’s heart-dog, Gadget was mine.

It never occurred to me to retire him. He loved work, and I loved working him and having his assistance. Because Gadget and Met shared so many similar health issues — vaccinosis, drug sensitivities and food allergies, and a related tendency toward seizures — I relied a great deal on Karyn’s knowledge of alternative veterinary care to keep Gadget healthy.

Gadget was an amazing service dog.

In 2007, two major changes took place in our lives: Met died, and I got Lyme disease. Jersey had died almost exactly a year before Met. Although I was sad, and I missed her, her death was not traumatic. She had been retired for several years; Gadget was working like a pro; Jersey had lived past the breed’s life-expectancy; and she did not have a long, drawn-out illness. I also had my family and friends, my personal care assistants (PCAs), my human partner, and most importantly, Gadget, there to support me.

Karyn’s loss of Met was another story. She did not have a successor dog already trained. She lived alone and didn’t have the supports I had. Met had been her everything, and I was deeply concerned for her. For as long as I’d known Karyn, she and Met had been a team, and I worried about how she would cope without him, not just in terms of the loss of increased independence and mobility that Met had provided, but as the emotional center of her world.

Of course, I didn’t give Karyn enough credit, because she has been a survivor of hard times her whole life. Two months after Met passed, Karyn adopted Thane, a red and white border collie. It was a hard time for Karyn — raising and training Thane in the wake of her grief. He was an adolescent and had some of the typical behavior challenges that come with adopting a young dog, as well as health problems that Karyn had to play detective with and solve, as she had so often for Met.

Enter Thane.

I was not able to be as much of a support to Karyn as I wanted at that time. Lyme disease took over and ravaged my life, leaving me with almost nothing to give. I was in excruciating pain, immobilized, affected cognitively and psychologically. Karyn later told me she worried she was losing me, too.

Thus, we developed additional commonalities neither of us would have wished for — new or worsened disabilities. Karyn’s vision and hearing both deteriorated, as she became deafblind. I went from being a part-time wheelie to a full-time chair user and experienced for the first time what it was like not to have the use and control of all my limbs. Having a friend who understood first-hand what this was like — someone who “got” what a catastrophe it was when my powerchair didn’t work — yet who never treated me like a freak or a tragedy for having multiple disabilities was very comforting.

I also lost the ability to speak most of the time. Because of being hard-of-hearing/deaf, Karyn could definitely relate to my frustrations with using TTY relay to make calls. She was one of the few people who was easy to talk to on the phone, since she used a TTY, too.

At this time, too, our shared philosophy of “overtraining” our assistance dogs really proved itself. We’d both trained Gadget and Met to perform extra skills that were “just in case” — skills that, most of the time, we didn’t use. But disabilities — and their attendant pain, fatigue, or chemical exposures — can be unpredictable. Some days those “frivolous” skills were downright necessary, and now we were both in a position to realize just how much we needed our dogs.

Karyn missed very keenly all the assistance Met had provided — not just the obvious skills, like guiding, but some of the occasional behaviors, too, as well as just basic house manners she’d taken for granted. It was an incredibly hard time for her, struggling to get Thane on track while missing Met so much; I read her emails with interest, but was often too sick to reply. Knowing her deafblindness was progressing at a fast and unpredictable rate, Karyn rushed to get Thane’s guiding skills established above all else. I hoped that she knew how hard I was rooting for her and Thane.

In my home, meanwhile, Gadget was performing many of those “bonus” behaviors every day. Because of my speech problems, the effort of having trained manual and voice commands for all Gadget’s skills also now paid off in a huge way. I relied on him more than I ever had. At my sickest and loneliest, my least functional, Gadget became my everything. He helped me survive.

Then, just as I was starting to improve, Gadget got cancer. Near the end of Gadget’s life, two years after Met had died, Karyn told me she needed some space from hearing the details of Gadget dying. It reminded her too painfully of Met’s downward spiral. I’ll admit, I felt particularly sad and lonely, not having Karyn’s support, but I appreciated her honesty.

Then Gadget died, and I was beside myself. Some days, I thought I would just explode into pieces. Karyn was truly there for me.

When I was grieving Gadget, Karyn knew better than anyone else the utter desolation of having lost my assistant, heart-dog, partner, and companion. The bond between a person and the dog they’ve trained to make the world more navigable, less exhausting, less pain-filled, is one that few can grasp. The rending of that bond is terrible and impossible to convey. Only someone else who has suffered such a loss can truly comprehend it.

To this day, I don’t expect true understanding from most people about my ongoing grief over Gadget’s death, except for Karyn. It’s a loss of a part of ourselves. Our furry boys had assisted us, day in and day out. They were at our sides all the time. We had trained and learned with them, fitting their skills to our particular needs and styles; so when we lost them, we lost our students and teachers, as well as our friends, companions, and assistants.

Likewise, when I got Barnum, the bouvier puppy I hoped would be Gadget’s successor, and was full of both fantasies and fears about his ability to grow into a service dog, Karyn understood. When I was buffeted by grief and my inevitable disappointment that Barnum was not Gadget, Karyn understood that, too. Karyn didn’t judge me for my frustration, anger, confusion, and grief that Barnum was not Gadget. She knew the desperation of needing a trained service dog now, and instead, having to respond with patience to a puppy who was taking every last drop of energy and goodwill I could muster.

By now, Thane is an accomplished guide dog and has some service and hearing skills under his belt, too. Karyn continues to hone their teamwork and expand his repertoire.

Thane knows his stuff these days!

A continent divides Karyn and me — with her in Oregon and me in Massachusetts, and neither of us able to travel — yet we have spoken on the phone, even though I couldn’t speak and she couldn’t hear. She sent me a video of Met and her working together, which gave me the idea to make a video of Jersey and me, which I sent her. (Unfortunately, I also sent it to other people, who didn’t return it, so I don’t have any video of Jersey.)

Karyn still sends me pictures, and I try to describe my pictures and videos of my dogs so that they have some meaning for her. We have supported each other through celebrations and losses, triumphs over adversity and deep despair. Between the two of us, we have dealt with more disabilities and health conditions than you could imagine!

For a dozen years, through big differences in our disabilities, where we lived, who was in our lives, and five different dogs between us, she has been the one constant in my online life. I am so grateful to her for everything she has given me, knowingly and unknowingly, the role model she has been, and the confidante. This is my love letter to you, Karyn. Thank you.

Karyn and Thane enjoy a moment of mutual adoration (Of course Karyn made all of Thane's gear!)

– Sharon, and the spirits of Jersey and Gadget (thank you for making her a better handler, trainer, and mom for us, Karyn!) and Barnum, SDiT (forevermore trying to catch up to Thane)

How I Sleep (Or Don’t): Powerless/In the Dark

Today’s post is for the December edition of the Disability Blog Carnival. This month’s host is Dave Hingsburger at Rolling Around in My Head.

The carnival is scheduled to go up on December 21 (the longest night of the year, for those of us in the Northern Hemisphere). The Disability Blog Carnival always makes for interesting reading, so do check it out.

Dave’s topic, and attached metaphors, are beautiful and inspiring. Here is a tidbit:

The theme is ‘dark nights of the soul and what gets you through them’ … I’d like stories and posts about how you’ve survived those times when it was ‘darkest before the dawn’.

A couple of weeks ago, I posted the first part of this series,^[1] about how I was sleeping a year ago, when Gadget was sick, then dying, then gone. Most of it was written, but not published, in February, when it was all still very fresh. The time it describes is definitely one of the “long, dark nights of the soul.”

I have sleep disturbances and insomnia from multiple illnesses; sleep issues have been part of my life since 1995. However, there are definite “up” periods and “down” periods. Insomnia-wise, some times are worse than others. The last two years have been a long stretch of “worse.”

Until I started writing today’s blog, I didn’t realize why my sleep has been particularly bad the last couple of years, and especially very recently.

Maybe people who aren’t as forgetful and confused about dates and times as I am would have figured it out — even seen it coming — but the cause seems to have been the “slumbering giant” in my consciousness.

Two years ago today, December 12,^[2] 2008, The Northeast Ice Storm hit. The weight of the iced trees snapped power- and phone-lines like dental floss. Even cell-phone towers came down.

I never saw the damage, I just lived its effects.

Due to my disabilities,^[3] I was stranded in my house (in my bed, actually), unable to evacuate, for a week.

A week without power: no lights, no phone, no water, no internet, no plumbing, no heat.

A friend with the same disabilities as I have, was even more severely affected by the storm, ending up in the hospital — an experience from which she has yet to recover.

After it was all over, my friend described the beautiful and surreal landscape she saw through the ambulance windows. She also emailed me a picture of herself holding up a newspaper from her hospital bed. The huge headline reads, “Powerless in the Hilltowns.” That pretty much summed it up.

An example of the dazzling landscape many described. Even now, though I see the beauty, I'm disconnected from the magic of such images; they evoke anxiety, not enjoyment.

[Photograph by Judy Stalus. Used with permission.]

Those were longer, darker nights than I’d ever known. I wrote out my will by flashlight in case I didn’t survive.

What got me through, in addition to my PCAs, my partner, Betsy, and my (now former) best friend with whom Betsy stayed, was “capital-G”-Gadget — my service dog and love of my life — and a lot of “lower-case-G” gadgets:

• My book on tape machine
• My iPod
• My flashlights
• My TTY^[4]

Wearing my warmest clothes, covered in all of the blankets in the house, I kept them all within reach.

Little things became hugely important, such as batteries.

I turned a flashlight on as soon as it got dark. I left it on until it was light, regardless of whether I was awake or asleep. In addition to the flashlight that was on, I kept a second one, with fresh batteries, at hand. When the first one grew dim, I’d turn on the second, then replace the spent batteries of the first.

When my talking-book machine’s or TTY’s batteries lost their charge, I panicked. I’d lie there, obsessing over when Betsy would be able to come and take it away to recharge it, and if I’d get it back before dark fell again.

During the day, I limited how much “juice” I used with anything that ran on batteries. I was very careful never to expend the charge on more than one device at a time. At night, I doled out the time with my book machine or iPod, forcing myself to take breaks to make them last longer.

Although, due to sound sensitivity from Lyme disease, I have not usually been able to tolerate music in the last few years, there was one song I relied on during those too-quiet nights.

I’ve never admitted this to anyone before, except Betsy: the Beatles’ song “Let It Be,” helped me get through. I listened to it at increasing volume, the ear buds vibrating, over and over. When the iPod died, sometimes I’d just hum it and cry.

Why does relying on “Let It Be” feel like such a dirty little secret? Partly because I’m Jewish, and the song, if you don’t know much about Paul McCartney, seems to have a very Christian tone.^[5] Partly because finding sustenance in a song, especially a pop song — especially a Beatles song — seemed such a cliché. (But — “Whatever gets you through the night, it’s alright” — isn’t it?)

Honestly, in the middle of that seemingly endless night, being Jewish, having no connection to “Mother Mary” — none of that mattered. It’s pretty much a Buddhist concept, letting it be, though it seems like all religions have some form of “turning it over.” When you’re powerless, there’s really nothing else you can do but turn it over, let it be.

Unfortunately, life didn’t get better after the emergency ended. It got worse, severely and quickly.

My dear friend, mentor, and colleague, activist Norman Meldrum (with Beatrix Underfoote). Norm died January 6, 2009.

Within three weeks of the storm, as I struggled with the PTSD it had caused, one of my best friends died, my best (and only nondisabled) friend ended our friendship in a nasty way, and my therapist terminated with me (largely because she refused to get a TTY).

A few months later, Gadget, my service dog, was diagnosed with cancer. Then I lost more friends — some to death, some to abandonment — then Gadget, until it felt like I was pared down to a numb nothingness.

I think the piling up of too much loss and trauma in a short period explains why my sleep has been particularly bad for two years.

It’s not just the chemical injury, chronic fatigue syndrome, and tick-borne infections interfering with my body and brain’s sleep cycles — though that certainly is enough. At a deeper level, it’s also that part of me is afraid to go to sleep because the literal and figurative darkness and stillness of night and sleep are too reminiscent of the outage.

Indeed, I can’t tolerate total darkness, or true quiet, now. At night, the sound of the air filters blowing and freezer humming, the shine of the LED lights of my clock, and the glow of my sleeping laptop give me comfort.

If there’s an outage, even during daylight — even during the summer — I panic. I never know how long it will last. I now keep lots of batteries, along with glow-in-the-dark flashlights, mylar blankets, and hand- and foot-warmers, next to my bed. For a long time after the storm, I kept a flashlight in my bed.

Lately, my sleep debt accrues with every day.

It started in November, with the anniversary of Gadget’s death. Grief hit me hard, kept me awake, dragged me to sleep during groggy afternoons, then broke me open again when I should have been sleeping.

However, even as the grief recedes, I continue not to sleep. In fact, as much as I long for sleep, I keep fighting to stay awake. It took me a long time to become aware that I was doing this. After all, if I’m desperate for sleep, why would I want to stay awake until dawn?

A happier time: Gadget and I meet Norm in Maine for the reading of my work he organized.

I now realize that it’s because some part of me recognizes these short days as the same natural patterns that occurred during the power outage. That wisp of panic urges, “Keep the lights on. Don’t stop working at the computer. Write; make sure people know you once existed. Live through the night.”

When gray light starts seeping through the curtains, I feel my body relax and begin to give way to sleep.

Of course it’s not a good coping mechanism. Sleep deprivation drives up my pain in a very predictable manner, which interferes with all other forms of functioning: speech, movement, thought.

Lack of sleep weakens my immune system, which is under the massive burden of fighting multiple infections, in addition to being upregulated for two decades, overreacting to foods and chemicals. Not sleeping also brings a host of little irritations: grouchiness, (worse-than-usual) cognitive problems, emotional brittleness, a continual buzzing in my head, and dry, itchy eyes, and on and on.

Nevertheless, there are times when I make peace with the insomnia, when I can look into the teeth of a long night of wakefulness with equanimity, even eagerness.

• When I’m feeling antisocial or my moods are being affected by “the bugs,” and I think it’s best for all involved if our interaction is kept to a minimum. (This works even better if I can manage to sleep when others are awake, too.)
• When I’ve gotten sleep during the day, and I know I won’t be able to fall asleep anyway, so why bother trying?
• When I can write, which has been such a rarity for so long that I will give up almost anything to have that part of me back. (Especially since some of my best or most successful pieces were written between 2:00 and 5:00 AM.)
• When I know I’ll have to wake up early anyway, so there doesn’t seem much point after a while in catching those one or two hours of shut-eye.
• When Barnum has both an appetite and an attention span, so I opt to train instead of sleep.
• When I’m hungry, which keeps me awake, so I distract myself until someone can make me a meal.
• When I have to pee, which keeps me awake, so I distract myself until I can get to the bathroom.
• When I’m in too much pain, which keeps me awake, so I just lie still and wait for the painkillers to work.
• When I’m writing a blog that helps me make sense of it all.

Peace.

-Sharon, the muse of Gadget, and Barnum (snoring away)

Footnotes:
[1.] Originally I planned to write two posts about sleep, but working on this post took me in an unexpected direction, creating a third piece. Since I seem to have a lot to say about what underlies sleep — or lack of sleep — in my life I’ve decided to turn “How I Sleep (or Don’t)” into an ongoing series. Look for other new series, as well. (I’ll also pick up the thread on some I’ve dropped, such as Barnum’s training logs — lots of developments!). Back to post.

[2.] I started writing this post a few days ago. I actually do know today is not the twelfth. Back to post.

[3.] CFIDS and Lyme made me too sick to be moved, but the real barrier was MCS, which meant that no shelters — neither the homes of friends nor disaster shelters, such as fire stations, were accessible to me. In fact, partway through the crisis, I located a friend who lived nearby who also has MCS and CFIDS, who was hypothermic and desperate, alone in her home. She stayed in my bedroom with me until her power was restored. Back to post.

[4.] Even though there was no phone service for most of that time, I used the TTY to communicate when it was too dim for Betsy or my PCAs to see my lips, gestures, communication board, or signs. Back to post.

[5.] During the time of the outage, I didn’t know that the “Mother Mary” in the song refers to McCartney’s mother, Mary, who died when he was a boy. Back to post.

My Lyme Disease Is Not the IDSA Lyme Disease – Sharon Wachsler

This past Wednesday, December 8, 2010, the Chicago Tribune published a lengthy article called “Chronic Lyme Disease: A Dubious Diagnosis.” This article is so biased and filled with misinformation, I need to respond. (As  you’ll see at the bottom of this post, I’m not the only one.)

The article’s central claim supports the stance of the Infectious Disease Society of America (IDSA) that chronic Lyme doesn’t exist.

[The IDSA concluded that there is] “no convincing biologic evidence” for a Lyme infection that persists and continues to sicken despite the recommended treatment, usually a few weeks of antibiotics.

My experience, and the medical evidence that is part of my experience, contradict this dangerous and preposterous notion. Here is my own Lyme disease story (which will act as Part II of the Lyme Awareness Month post from May 2010, when I promised to describe how Lyme has affected me, and what you should know about it).

Summer of 2007

My case is a little different from the typical “How I Became Disabled/Ill” narrative because I was already disabled by chronic illness before I got Lyme disease. I usually try to avoid comparisons among disabilities, but I have to speak the truth: What I have gone through with Lyme disease has been much, much worse than what I experienced in my previous decade of chronic illness. I would gladly have my other illnesses double- or triple-fold more severe if it would rid me of Lyme. I’ve lost parts of my life and myself to Lyme I didn’t know it was possible for me to lose.

Here’s how it started. One day, I was sitting on the couch watching TV, absent-mindedly running my hands through my hair when I felt something sticking out of the nape of my neck. After living in the severely tick-infested area of rural Western Massachusetts with two dogs, I immediately knew this was a tick, although it felt rounder and much smaller than I was used to. Nevertheless, I wanted it off me; I didn’t want to wait to mess around with mirrors and tweezers, so I handled it as I did the dogs’ ticks — I grasped it at the base and pulled.

I heard the “pop!” that occurs when a tick is removed that’s been embedded, and as I had pulled at an awkward angle — my hand behind my head — I dropped it. Into the sofa. The falling-apart, loose-foam, shredded-upholstery black-hole-of-a-sofa. I tried to find it, but I never did.

I was pretty sure it had been a tick, but I wanted to see. I was hoping I had just pulled off some random, weird thing that was not a blood-sucking insect. However, when I checked in the mirror (two, actually, since it was on the back of my head so I couldn’t see it without a second reflection), there was a large, dark-pink raised area with a bloody center — just like how it looks if I pull an embedded tick off my dog. I cleaned it and hoped for the best.

I checked it again over the next couple of days. The area was flattening out, the scab was healing. My (mis)understanding at the time was that if one contracted Lyme disease, a bull’s-eye rash would appear immediately at the site. I saw no rash, so I forgot about the bite.

About a month later, I developed joint pain in my fingers. Out of all the symptoms I’ve had with all my health issues, I’ve never had my joints bother me. The pain was bothersome, but not severe. However, I was a writer, and I relied on my hands for work as well as to make up for functional limitations in other areas caused by my disabilities. I was very protective of my hands. I just didn’t want anything to get worse. Fortunately, I happened to have a doctor’s appointment coming up.

At my biannual appointment with my primary care physician, I mentioned the joint pain. She thought it was probably a worsening of my other conditions, but suggested a couple of tests, including one for Lyme. That set off a bell in my head. I remembered that thing that I had pulled off the back of my head. When I got home, I grabbed my hand mirror and went to look in the mirror over the bathroom sink. I parted my hair and looked at the area where the bite had been. It was flat now — no more bump — but it was definitely discolored. It was red.

I looked up Lyme disease online and discovered that the array of symptoms I’d been experiencing in the last couple of weeks were classic of Lyme — not just the joint pain and the rash, but the new kinds of headache and vertigo, the drowsy fatigue, the constant ache in my neck and shoulders, and more. Crying, I got out my dog-grooming clippers and shaved off the hair in that area so I could be certain of what I was looking at. I compared it to the pictures of erythema migrans (Lyme rashes) I’d seen online. Bull’s-eye.

Well, metaphorically, at least. Some EMs look like bull’s-eyes, but they are just as likely to be roundish, red rashes. I knew this was serious.

My Lyme rash (EM). The clear spot in the middle is where the actual tick was attached.

I called my PCP and told her about the tick bite and symptoms. Because I’m allergic to tetracycline, a relative of doxycycline, the frontline drug for Lyme, the doctor prescribed the second-best antibiotic for early Lyme, amoxicillin. I read all the comforting information by the Centers for Disease Control (CDC) and the IDSA that Lyme, when treated promptly, responds quickly and completely to appropriate antibiotics. I had heard of chronic Lyme, but my impression was that this was a disease that only occurred if one went years without treatment after infection. I also thought of it as a mild disease, more of a nuisance — some joint pain, maybe a little fatigue, but not a big deal.

“Something Curable and Non-Controversial”

I focused on the information on site after site that said prompt diagnosis and treatment would cure me. I even told my friends and family, who were upset and scared to hear I’d contracted Lyme, “At least I have something curable this time!”

I meant it. Yes, I was scared. I didn’t like having a frightening disease given to me by a disgusting tick, but I felt almost giddy with relief that now I would be on the road to recovery. This was just a bacterial infection. Antibiotics kill bacteria. Within a couple of months, I’d be back to normal.

It was also a nice change of pace to have a disease that seemed to be without controversy. Lyme was caused by a known microbe; nobody disputed that. Unlike my other diseases, whose etiology was still being pieced together, this time I would not have to hunt for a physician who knew how to diagnose and treat me.

I stayed on the amoxicillin. Initially, I got much sicker (which I now know is a Herxheimer, or die-off reaction), and then most of my symptoms started to improve. But not all of them. My PCP kept me on amoxicillin. Weeks turned into months, and some of my symptoms, including my rash, persisted. Different antitibiotics just made me worse. I became much sicker.

Thank God I had that rash.

Doesn’t that seem like a strange thing to say? That’s because in the hellish time to come, the rash would be the one piece of incontrovertable truth that the tick bite had occurred and done damage. It was proof of infection, proof that something wrong was left behind, something visible on the skin.

In November, I became suddenly and drastically worse. The light- and sound-sensitivity and headaches became all-consuming. The musculoskeletal pain was unendurable. I developed neurologic symptoms, including intermittent vocal-cord apraxia (inability to speak) and functional paralysis in my arms — and more often — my legs, severely compromised cognition, and behavioral and mood changes.

I was so weak that I couldn’t leave my bed and had to use my powerchair to get to the bathroom. I needed help to brush my teeth, eat or drink, get in or out of bed. I had trouble breathing and eating; I lost thirty pounds.

I started searching for a doctor who could help. None seemed able to intervene because none of them were convinced, entirely, that my illness was caused by Lyme. Why? Because all of my Lyme tests were negative. I soon learned that this was meaningless; Lyme tests are notoriously inaccurate for producing false negatives. I was tested over and over for multiple tick-borne diseases by multiple doctors as I started seeking more answers. All bloodwork returned “inconclusive” or negative.

However, the CDC officially states that blood tests are not to be used as primary diagnostic tools for Lyme. The IDSA and CDC both say that the presence of an EM rash is 100-percent proof of Lyme infection, and that treatment of patients with EMs should begin immediately; blood tests in such cases are optional.

That’s what they say. Officially. However, none of the doctors seemed to know this. . . .

“Lyme Can’t Cause This.”

I was desperately ill and scared. My friends and family were afraid that I was dying. Yet nobody could come up with a diagnosis. Physical exams and blood tests showed abnormalities, but nothing gave a conclusive answer as to the why.

The only thing we knew that had been added to the mix was Lyme disease, and that was now being dismissed because (1) all my blood tests for Lyme were interpreted as negative (despite that all my lab results say right on them that the test is not conclusive and that clinical evidence must be taken into account), and (2) my doctors were as uninformed about Lyme disease as I’d been.

“Lyme can’t do THIS,” I heard again and again, as each doctor rushed me out of his or her office. Most knew something physical was truly wrong, yet I still heard suggestions for psychiatrists. Doctors who had known me for years treated me like a scary stranger. I was told to find out what was wrong and then come back. Some refused to see me altogether.

Yes, I had had Lyme, the doctors agreed, that was not in dispute, but since I’d been treated for it (actually, according to IDSA standards, I’d been overtreated for it), it could not possibly be the cause of my myriad symptoms. My Lyme was cured. So, all of this suffering and blatant physical dysfunction that occurred immediately following infection was just a coincidence. Besides, everyone knew Lyme just caused some joint pain, headaches, Bell’s palsy, etc. It didn’t make you unable to speak or lift your foot. It didn’t create such agonizing pain that it literally immobilized you. It didn’t destroy your life, like whatever this was.

Thus, in February 2008, my Lyme doctor stopped treating me. She knew I was sick, but without a positive test result, she said she couldn’t “justify” continuing to prescribe antibiotics. I didn’t know at the time that doctors who treated patients with Lyme beyond the IDSA’s “guidelines” were in danger of losing their licenses, losing insurance coverage, and even criminal prosecution. I just knew I was being abandoned.

I spent nine months without treatment, unable to talk, stand, feed, toilet, or bathe myself. I was in excruciating pain, nauseous, dizzy, and couldn’t tolerate any sound, movement, touch, or light. I had migraines around the clock. I had psychological symptoms I’d never had before, altering my personality, and causing me to lose most of my friends.

During this time, not knowing what else to think, I eventually began to believe the doctors. They said this wasn’t Lyme, therefore it must not be Lyme. I didn’t know what it was. I just was holding on for dear life.

I had one friend who had gotten Lyme around the same time as I had. Luckily, her test results had been positive, though she did not remember a tick bite. She was absolutely convinced that my symptoms were caused by Lyme and coinfections. She sent me printouts of Internet Lyme forum posts from other people who’d lost their voices, who couldn’t stand or walk or had tremors, and on and on. She begged me to get retested.

“Positive”

Physically and emotionally, it took everything I had to get retested. In October, 2008, I was again tested for antibodies to the spirochete that causes Lyme, as well as for three other tick-borne diseases. I couldn’t bear the thought of the results coming back stamped, “Negative, negative, negative.” It would be the end of hope. But, I needed someone who was in a position to help me heal to finally know the truth, and this seemed the only way. I had to risk it.

I remember sitting in front of the fax machine, slumped over with exhaustion in my power wheelchair, as page after page came through from the lab.

• “Western Blot, Borrelia burgdorferi” (the microbe that causes Lyme), “Positive.”
• “Lyme disease — Confirmed by Southern Dot Blot, Positive.”
• “Babesia microti” (another tick-borne disease), FISH (a test that shows the presence of the parasites’ RNA in my blood), “Positive.”

As the positive results came through, I cried and cried. Finally, answers. Finally, “evidence” that I wasn’t “crazy.” Over a year-and-a-half after infection, the combination of antibiotics goosing my immune system into producing enough antibodies, and the time that allowed the organism to multiply in my blood and tissues had led to proof: positive blood tests for Lyme and babesia.

Based on these results, my doctor started treating me again. She said she was “thrilled that now she could finally help me.” I can only assume that she had been afraid to risk it before, to risk her practice, because of the politics.

With these two diagnoses came a third — Bartonella. I had almost all of the symptoms, and it is even harder to get an accurate test for this infection than for Lyme. In light of the proof of existing tick-borne disease, my doctor now made a clinical (symptom-based) diagnosis of this third infection. Bartonella seemed particularly likely to be at the root of the psychological symptoms that had cost me my sense of self and most of my support system.

Thus began a grueling treatment regimen, with herx reactions so strong that they usually lasted for several months. Now I am slowly — very slowly — getting better. I’m still not back to how my life was. But I can do more, I suffer less physically, and my personality has been returned to me. I have hope.

“Dubious?” How about “Definitions”?

The IDSA says there is no evidence for chronic Lyme infection that persists after their recommended treatment of 28 days of antibiotics.

My body — my story — provides the evidence that the IDSA is wrong.

Let’s break it down, definition by definition:

• Evidence: It should be enough for any practitioner to have seen me to know that I was physically ill (and, indeed, that’s what they saw and various blood tests and exams showed), but since clinical common sense was not enough, let’s look at the evidence that takes the human factor out of the equation. We have my EM, at the site of a tick bite. That’s evidence that the CDC and IDSA don’t even dispute. We have the multiple blood-test results that show that one-and-a-half years after infection, the microbes and antibodies were still in my blood. Evidence? Check.
• Chronic: Chronic disease refers to a persistent and lasting medical condition. In some cases, I’ve seen cut-offs of months or years used to define chronic. Six months is sometimes used, or a year. I had positive test results of infection twenty months after exposure. Three-and-a-half years later, I’m still sick. Chronic? Check.
• Infection: Here’s a good definition of infection. “The pathological state resulting from the invasion of the body by pathogenic microorganisms.” Borrelia burgdorferi, “the Lyme bug,” is a bacterium in the spirochete family, similar to the microorganism that causes syphilis. Babesia microti is a parasite that causes babesiosis, similar to the parasite that causes malaria. Infection? Check.
• Persistence of illness after IDSA’s protocol has been performed: I was on amoxicillin from July 2007 through October 2007 and cefuroxime from October 2007 through February 2008. That’s a lot more than 28 days. Yet, as is clear from the evidence of chronic infection above, I was still sick. Persistence? Check.

So much for my easily curable, noncontroversial illness. That’s the IDSA Lyme disease, not my Lyme disease.

I sure wish the gap between the two wasn’t so wide. I sure wish my illness had been quickly and easily curable.

If the IDSA’s picture of Lyme matched the reality of it, that tick bite would have faded, along with my rash, to a distant memory.

If that had been the case, not only wouldn’t I have had to suffer the physical damages of this illness, I wouldn’t have to write a blog to counteract misinformation claiming that my experience doesn’t count, and that my disease doesn’t exist.

Thank you for reading.

-Sharon, the muse of Gadget (who also had Lyme, and who also required treatment much longer than he was “supposed to” have), the spirit of Jersey (who seems to have escaped the plague), and Barnum, who gets tick-checked every night from March through November and has had over 60 deer ticks found on him in his first year alone in rural Massachusetts

P.S. Please support this effort. Comments are very welcome. I also encourage you to visit the following other bloggers who say “My Lyme Disease Is Not the IDSA Lyme Disease.”

I believe Ashley spearheaded this effort; she is a fierce and eloquent advocate for Lymies. Some of the other bloggers also have MCS, like me. Candice is one with severe MCS and food allergies, and a moving story. Heather’s tale is one of the most compelling I’ve ever read, on any topic; please read it.

• Ashley van Tol at Lymenaide
• Abigail at Live with Lyme
• Alix at SpiroChicks
• Alyson at Adventures in Lyme Land
• Andrew Peterson at The Next Ten Minutes
• Brooke at Lemon and Lyme
• Candice at Infectiously Optimistic
• Eric Rutulante at LymeBites
• Heather at I Am Not Lyme Disease
• Kenneth Mercure at The Lyme Life
• Kim Christensen at Affairs of Living
• Kim Trick at Wallet Friendly Wellness
• Molly at I’m in the Lyme Light
• SixGoofyKids at Lyme Treatment
• Anika at Five Lymies & a Baby
• Dawn at Brian & Dawn Denio (Access note: This site automatically plays music when you open it.)

Hospital Access FAIL

This is not what I want to be writing about. I want to be activisting about the horrifyingly biased, unresearched, and clearly bought article the Chicago Tribune published recently saying that chronic Lyme disease doesn’t exist. (I am not linking to it because it does not deserve any more attention than it has already gotten. The wankers.)

As you can tell, this has me pissed off, because this nonexistent illness has been fucking with my life a lot this week (as well as for the last few years). But for right now, let’s focus on this week. Let’s just focus on the last couple of days.

There has been vomiting. There has been severe pain and immobility. There has been vocal-cord apraxia — the inability to produce speech — which is a prominent player in my story. There have been many nights where I barely slept at all, such as last night, when — after I recovered from violent puking — I slept from 3:45 AM to 5:00 AM, and then later from 1:00 PM to 2:30 PM.

This second round of sleep — if you can call it that — was filled with nightmares of me trying to reach my doctor or communicate with my visiting nurse, and it all going wrong. I repeatedly woke with a gasp and my heart pounding. Which was all true to life.

So, what, you may wonder, is this all about?

First part of background: I have a PICC line. I am very grateful for my PICC line because it is part of what saved my life when I was being eaten from the inside by bacteria, parasites, and other microbes, otherwise known as Lyme disease, babesiosis, and bartonellosis. It has been part of the treatment that has vastly improved my quality of life and my hope for a healthier future.

It’s also a pain in the ass that I’ve lived with since August 2009. However, when I had to stop treatment for a month, I backslid in a serious way, and I feel like if I could safely stay on my antibiotics for the rest of my life, and they would continue to reduce my symptoms, it would be worth it, by a long shot.

The second piece of background: The medication that I infuse through my PICC is called Rocephin, which is an antibiotic. The good part about it is that I have tolerated it (which is often not the case with medications), and that is hasn’t messed up my liver (another frequent medication problem), and that it has worked — in other words, it has helped me get better.

Yay! The only major concern I had is that long-term use of Rocephin can cause gallbladder sludging or gall stones. To try to prevent this, my doctor has me on a schedule of infusing four days in a row and taking three days off, each week. The time off is to give my gallbladder a chance to rest. So far, I hadn’t seemed to have had any gallbladder issues, which was good, as any time in a hospital is really deleterious to my health. When I had to get a liver sonogram a couple of years ago, it set me back several months of functioning.

I’m not going to sugar-coat it: PICCs require a lot of upkeep. Small things can go wrong, and big, life-threatening things can go wrong, and a lot of stuff in between.

This is actually my second PICC. The first time I got one inserted, it was planned far in advance. Because it was planned in advance, I could set up the accommodations to my disabilities I needed. Since my voice often doesn’t work, especially in situations where I am having increased bodily trauma, such as the chemical exposures and exertions attendant with a hospital visit, I usually request an American Sign Language interpreter (ASL terp) for medical appointments. This allows me to communicate much more safely, fully, and effectively, especially because I wear a mask that covers my mouth and prevents others from lip-reading me.

It turned out to be very important to have that terp there that day because I was immobile and covered from head to foot except a tiny portion of my face and my left (non-dominant) hand, so communicating would have been a challenge in the best of circumstances. The interpreter was outstanding. She was working without syntax or grammar — which are read on the face — and with only my non-dominant hand signing.

Six months later I needed to have my PICC replaced because it was blocked. There was no interpreter available, but Betsy usually understands me very well, and her presence alone would be a comfort, so she got dressed in scrubs and came into the operating area with me. The first PICC insertion had taken half an hour. We expected this one to go as well. Instead it went TWO AND A HALF HOURS because my veins went into spasm, and they had to keep trying new veins, after prodding a spasming vein for an hour to see if that would help it relax. (It didn’t.)

And, Betsy only understood about one-eighth of what I said, because she is used to lip-reading me, which she couldn’t do with my face covered. It was pretty traumatic for both of us.

Yesterday, I was doing my infusion, as usual, when I noticed that it was hurting very mildly. I am in such severe pain everywhere on such a chronic basis, I didn’t even pay attention. After infusing, I always need to flush the line with saline and then heparin (a blood thinner that keeps the line clear). Each time I flushed, it hurt very noticeably. This is not normal. It’s never happened to me before.

I called the visiting nurse association (VNA) that is in charge of maintenance of my PICC and described the problem. I expected the nurse supervisor to ask me a bunch of questions to try to determine what might be going on. Instead she said she would have my nurse (who comes every week to change my dressing), call me.

Nurse called. She asked one question, and didn’t ask all the others I thought she would (to assess, oh say, if I was going into septic shock or had a deep-vein thrombosis) and then she said she’d come take a look tomorrow. She said not to flush the line or infuse until then. She also said she’d talk to my doctor the next day.

I wasn’t happy about this because (1) that meant waiting possibly 24 hours for any idea as to what was going on, and (2) my doctor doesn’t work on Fridays. I told Nurse this. She ignored me. I know from experience it can be difficult to reach my doctor when she’s not in the office. And she has no other backup; she is the sole doctor in her practice. If you need to speak to her off-hours, you have to call her personal cell phone, which sometimes she answers and sometimes she doesn’t.

“We’ll reach her through the on-call service,” Nurse said. I gritted my teeth. This was not the first time we’d gone through this situation, but she clearly wanted to be done for the day, and I didn’t have much choice in the matter.

Today, when Nurse did not call to tell me when she was coming (as she always does and had said she would), I called her. She sounded annoyed. She told my PCA (because I couldn’t speak), that I should try a saline flush and see if that hurt. If it did, I’d need to get the line pulled. If not, she’d come over later. She said she’d call in a few minutes to see how the flush went. I flushed, and it didn’t hurt like last night at all, but afterward, it did sting a bit, which is, again, unusual. Then we waited for her to call back, which she didn’t.

So, we called her. We had a pointless conversation, interpreted by my PCA because I couldn’t voice. She said she’d call Doctor and call back. I wanted to tell her Doctor doesn’t have office hours on Fridays, but I had to type whatever I wanted to say so my PCA could read and relay it from the computer screen, and it seemed like too much trouble.

An hour passed, we called her again. Nurse hadn’t heard back from Doctor. Big surprise. I told her again that Doctor is hard to reach on Fridays, and Nurse said that was okay, she’d reach her through the answering service or speak to the on-call doctor. I tried to get across that Doctor is the on-call doctor. The only doctor in her office.

While all of this is going on, Betsy and I are trying to figure out: Does she need to leave work? Does she need to cancel her plans for the evening (that are very important to her) to take me to the ER? We were left hanging, and Betsy was not happy about it, because so many other people would be affected if she had to rush home.

Another issue came up. I started to ponder why I had been doing all this vomiting lately, which is not normal for me. Why all the nausea, the bloating and gas? Was it more than my usual food allergy issues? Could these be gallbladder symptoms?

You already know the answer. I looked up gallbladder symptoms, and I have all the risk factors (really), and most of the symptoms. Now I needed to get a gallbladder sonogram, too. And I needed to communicate this to my doctor right away!

Eventually, at the end of the day, Nurse told me she hadn’t reached Doctor, so she couldn’t officially tell me what to do, but she’d discussed it with the nurse supervisor, and they felt I should go to the emergency room and have the line pulled. I have many reasons — particularly my MCS — for not wanting to go to the ER unless I’m really dying, to take that decision lightly.

I tried to reach Doctor myself, a few times — by email, by message on her office phone, by calling her on her cell, which is the number that the office voicemail gives out for medical emergencies but which she sometimes doesn’t answer. Finally, after my final conversation with Nurse, I called Doctor and she answered. I gave my full name and asked her if she’d heard the messages from Nurse and me.

“Sharon who?” she said. Not the kind of reception I was hoping for. I told her what was going on and that we’d been trying to reach her all day.

“You know Friday is my day off,” she said.

I said yes, I did know, and I’d tried to explain that to Nurse, but she didn’t seem to understand. Then she finally swung into Doctor Mode and asked me relevant questions: Was my arm red? Swollen? Hot? Was the insertion site painful to the touch? Did I have a fever?

When I said no to all of these, she said I didn’t have to go to the ER, I could just get my line replaced. I said I wanted to do it as soon as possible — ideally Monday — at the same time as I got the gallbladder ultrasound. She said she didn’t know if either were possible, but she would call the hospital on Monday morning. I had hoped she would call them right away, but I gave up.

I continued to read about how to heal your gallbladder at home, without having to undergo surgery for removing it, which would be disastrous for my health — both the surgery itself as well as being without an organ that helps detoxify my body. We MCS folks need all the filters our bodies can provide.

It was extremely depressing because pretty much all my other disabilities and health conditions — including dozens of food allergies and sensitivities, my PCA schedule (because they cook for me), and the way I eat to control my cholesterol — demand I follow almost the exact opposite way of eating. I really don’t know how I’ll make it work, but I’m trying anyway. Nobody’s taking my internal organs without a fight, dammit.

Then Doctor called again to tell me I had a 9:00 AM appointment on Monday for the ultrasound, followed by an appointment for PICC line removal and replacement. I’d have to check in at 8:45, and I’d have to fast the night before. Well, that was fine. I was so relieved.

I cried about how exhausted and scared I was to some friends, and then I realized I should try to book an ASL terp, even though it was almost certainly too short notice for them to have one available. I also thought I should mention the MCS and request fragrance-free practitioners, though, again, I knew that was unlikely.

I called the hospital and asked for a terp. Of course, when I was making this call, my voice was working, so I’m sure the switchboard operator was confused, but I didn’t feel like explaining. She looked up my appointments and said, “Oh, those were canceled.”

“What?!” I said. “Who canceled them? Why were they canceled?”

The operator told me that my file shows I need an interpreter, and they had called their one ASL terp to see if she could do the job, but she already had a job at that time, so they canceled the appointments. Without asking me if I wanted them canceled. Without even telling me they were canceled!

If I hadn’t called in, Betsy and I would have shown up at the time we had been told to show up for our scheduled appointments and — silly us! — expected that I still had those appointments. AUGH!

I told her that, yes, a terp was helpful, but it was more important that I have the procedures. “I need to go to those appointments!” I said. “Can’t you un-cancel them?”

She said no, she wasn’t in radiology, she didn’t know their schedule or which appointments they had or didn’t have.

“But you knew about my appointment being canceled and about the interpreter thing,” I said.

“That’s because we book the interpreters,” she explained. “But we can’t make appointments. Your doctor can call in Monday to make the appointments.”

“But then it will be too late!” I said.

She asked me the name of Doctor (my specialist), whom she didn’t know. Then I told her the name of my primary care physician, who is well-known at this hospital. She made an agreeable sound.

“What if I have someone from that practice — whoever is on call tonight — call in and make the appointments?”

“It’s after business hours,” she repeated. “You have to wait till Monday to make appointments.”

She added that the state agency that’s responsible for providing interpreters would provide a terp if I was coming in over the weekend, for an emergency. But since I was trying to come in for an appointment on a week day, they wouldn’t provide an interpreter.

There it is: Because the hospital couldn’t meet all of my access needs, it responded by denying me the medical care I need, without consulting me about my wishes or needs, and without even telling me that they’d taken this pre-emptive step.

If I were Deaf, the option of making do without a terp would likely be even more of a hardship (since I can hear/understand what’s being said to me in spoken English; I just can’t respond). I also didn’t need a relay or interpreting service to make the call, which I know from experience makes everything much, much harder and longer and more complicated.

Be-that-as-it-shouldn’t-be, I had to call Doctor again and apologize for bothering her in the evening on her day off again, but that the hospital had canceled both my appointments, and could she please call the hospital and make the appointments again. I also asked her to stress to the hospital that while I prefer to have an interpreter available, they should not cancel my appointments if they can’t provide one! Fortunately, Doctor was very nice about it.

So, assuming my symptoms don’t continue to mount and I end up in the ER anyway, very, very early Monday morning, Betsy and I will be packed and ready to go, waiting for a call from Doctor to let us know if she was able to book those same slots, in which case we’d need to haul ass up to the hospital. Or if we were going some other time.

I could just vomit. But I hope I don’t,  because I’m getting tired of that.

stuck day

today is a stuck day. i haven’t had one in a long time. i thought i was done with them. that’s lyme for you. once you think you’re doing better, it returns and kicks your ass.

you probably can’t tell today is different from my writing, except that i’m not using caps. if i tried to use caps, i wouldn’t be able to write/post. that’s because all i can move right now are my hands, my facial muscles, some minor head/neck movement like small nods, and the lower part of my right arm. with great exertion and pain, actually, i can move more of both arms, but that’s only for necessities, like signing, typing, positioning. i’ve also reread this later when i was more functional and corrected the huge number of phrases that made no sense.

here’s what a stuck day is like: i wake up and think, “oh, i have to pee.” i realize that i’m in a lot of pain and feel weak, and the idea fleetingly crosses my mind that i might need help to get out from under the covers. “nah,” i tell myself. “don’t be such a drama queen. once you get going you’ll be fine.”

So (oh look, i did a caps! the drugs are kicking in!), I roll onto my side, and i get stuck. i can’t get the blankets off me. i can’t even move my arms or my legs, i realize. i can’t talk. ohshitohshitohshit.

then, i have to find my call button. this is the doorbell i wrote about in a previous post. no, i’m sorry, i can’t put the link in right now. maybe later, when i can move. [note: i’m doing a bit better now, so i’ve put in said links.]

anyway, i need to hit the button which is now loose on top of my overbed table. with great effort i get my left hand up onto the table, and it crawls around like a crab, searching. i hit my “clik-r” clicker button, and i hear barnum pop up. sorry buddy. bad trainer. no cookie. eventually i find and press the doorbell button. thank god!

here’s the problem: i’m lying on my side with my back to the door. i can’t talk or really make any sound. i can’t move at all except my left hand. so when i hear carol, my pca, open my door, i know she is waiting for me to say something or indicate something. and i appear to be all snuggled up, asleep. i try to sort of flap my left hand, opening and closing it, hoping she can see it from where she’s standing, but apparently she can’t, because I hear the door shut. DAMMIT!

“well,” i think, “i’ll just have to ring again. eventually she’ll realize i wasn’t ringing by accident in my sleep.”

yeah, right. cuz i can’t find the fucking doorbell button this time. i press the clicker again another couple of times — barnum’s really curious as to what’s happening now — and i can’t find the button. through tremendous effort i pull myself up a few inches to better search the table and find the button. i grab it — not letting it go anymore today — and ring it repeatedly.

i try to roll onto my back so i can communicate better, but can’t. fortunately, betsy comes to the door. yay! I had assumed she was asleep. she asks if i rang. i sign “yes.”

she asks what’s going on. i sign, “stuck,” which is a v-hand shape, finger tips on either side of adams apple.

her sign is rusty. she can’t remember that word.

“is it your heart?” she asks.

I shake no, then fingerspell S-T-U….

“You’re stuck!” she announces.

Relief. Nod.

“Do you need to go to the bathroom?”

Affirmative.

Thank god, betsy knows the drill. carol does, too, but she has back issues and is getting over the flu, and betsy understands me when i’m nonverbal better than anyone else does. also she’s strong as a power-lifter. she pulls the heavy blankets off me. she pulls my legs toward the side of the bed. she moves my pchair into position. she grabs my hands and pulls me into a sitting/slumped position. I take a moment to rest, then she lifts me onto the chair. i’m no lightweight. i’m always surprised how strong she is.

barnum is overjoyed to see betsy — and me out of bed — and he throws himself between us, wriggling, wagging, kissing, pressing against us. he is soaking up betsy’s attention primarily, because she’s more capable of good butt-scratching than I am. i ask her to stop so i can give barnum some attention, have him just focus on me for a bit.

refreshed by puppy love, we get back to business. i take the call button with me to the bathroom. once there, betsy picks me up off the chair while i pull down my pants (fortunately the muscle lock has eased enough now that I can do this), and i pee . . . for a long time! (you know the scene in A League of Their Own when Tom Hanks pees endlessly and Mae/Madonna takes out a stopwatch to time it? it was like that, except i wasn’t all hungover and gross.) we chat a little, mostly consisting of me mouthing/signing, “this sucks. why is this happening?” and exchange more dog love. Betsy helps me back onto the chair and then settles me in bed (without the quilts, which are too heavy, and even when i’m doing better, could immobilize me just by their weight alone). i just keep my light organic cotton sheet and blanket.

then she leaves me to go do other things and carol steps back in. my first priority is getting pain and muscle relaxant meds in me, so I can function better. i do a lot of mouthing and miming to get across what i need. carol and i get my laptop computer open and readjust my position, overbed table, and screen so i can communicate with her by typing.

one of the worst parts about stuck days is when they are apparently caused for no reason. i have no idea why today i’m doing so much worse than yesterday. i don’t know if this is my fall crash, and now i will be wrecked for weeks or months to come, or if this is just a blip. i don’t know if this is a result of the new Lyme treatment drug i started Thursday. fortunately, i am too exhausted, painful, and crappy feeling to care much about what it all means. i’m just focused on getting through, minute by minute — or actually, task by task. i feel relief that i have carol and betsy here to help me. it feels so much better to have peed and have the right bolsters supporting me in bed. writing this blog gives me something to occupy my brain, other than worrying what the cause of Mystery Stuck Day is and whether it will stretch out into weeks or more from here.

(the meds are really kicking in now, which is good because i can move better and feel less crappy. but it’s bad because i took them on an empty stomach, so i’m getting sleepy and dopey, and i want to finish this blog before i go back to sleep.)

several times since waking up, i have missed Gadget so bad it was a physical ache. if i’d had the energy to spare, i would have cried. but that would have wrecked the small physical gains i’d made, and i don’t even think i have the lung capacity for deep breaths, so i just locked those feelings in. in my heart, i was crying. it’s 20 days till the anniversary of his death, and i feel so heavily the weight of his absence today. he could have helped me transfer — to and from the bed, chair, and toilet. he could have gone for carol or betsy so i wouldn’t have had the stress of not being able to indicate i needed their help. he could have carried messages to them telling them exactly WHAT i needed. he could have opened my door again and again so that i wouldn’t have had to endure what i did to find the call button the second time.

the only “help” barnum provided was licking my face a LOT. i certainly appreciated that, even more than usual, but a little emotional boost and distraction only gets you so far on a day like this.

there’s also the hindering Gadget would NOT have done. (For the record, Jersey wouldn’t have helped me much on a day like this, because she was trained and worked when I was much more functional, but she also would have been very easy — no demands.) gadget wouldn’t have jumped up with his forelegs landing on my legs after i was back in bed, causing severe pain. he could have let himself out to pee and then come straight back in. he wouldn’t have stepped on my burning feet when i was sitting on the toilet. and then. . . .

when carol left me after i was resettled and typing this post, barnum started The Barking. Lately, once a pca (especially carol, his favorite) leaves, he tries to demand their return. after all, i am Boring Lady, stuck in bed, not playing or giving love or attention, while he could be following carol around the kitchen, watching her prep my meals. hearing lovey-dovey talk. getting rubbed behind the ears. etcetera. so, the second they leave my bedroom, he sits at my door and barks.

which is why the pcas all have to ignore barnum until i get up for the day. but i am still dealing with the extinction barking while barnum tries his damnedest to change my tyrannical rule.

lately, i’ve been dealing with this by working on “bark” and “quiet” with him, but being nonverbal, i couldn’t say quiet. HOWEVER, having learned from the past, he knows 3 cues for quiet: ASL for quiet, the word “quiet,” and the sound, “shhhh.” I taught, “Shhh,” because it’s a sound i can make even when i can’t speak. the ASL for quiet requires lifting hands to mouth height, which I can’t do right now.

so, after he has started the very loud, very sharp barking, it occurs to me that i can actually do something about this. i try to call him over to put his front end on the bed near my upper body, but he really only knows all the many ways i have of telling him “off,” for all the times he tries to get on the bed, because normally he wants on and I want off. of course, today i am patting the bed and making kissy noises and he just stands there, waiting for me to make my meaning clear. I can’t communicate “up” nonverbally. something to remember for later: need to teach signed cue for “paws up!” but i have my clik-r, which, despite its other faults (not my preferred clicker), is good for a day like today for two reasons:

1. it takes very little pressure to depress the button, so even on a weak day, i can usually manage it
2. it’s very, very quiet. barnum has excellent hearing, so he can hear it even if i click during one of his ear-splitting barks.

fortunately, i always have treats close to hand, so i click and treat for a silent moment. then we start practicing “shhh,” which goes well. he’s bored, and now i’ve given him something to focus on. occasionally i throw in the cue for “bark,” just to keep things interesting.

i am having trouble pitching the treats onto the floor, so i hold my open hand, palm up, on the bed, a treat on it, and barnum takes it that way. much easier. also, interesting note: he was ignoring most of the treats i threw on the floor, because they weren’t “good enough.” But when i offered them in my palm, he took them. could it be the energy expended was not equivalent to the value of the treat if he had to chase it? Or that, love-bug that he is, the contact involved in taking from my open hand added value? or that he liked the chance to “eat off the bed” which he normally isn’t allowed? the novelty?

at any rate, this gave me an idea. i do want him to learn to have paws/front up on the bed when i need his help, when invited, but not to have any part of his body ON my legs or feet — or other body parts — as that’s too painful. so i moved my hands back, closer to my body, for treating, and he jumped up and settled his torso parallel with my legs. actually warmly just barely touching them. felt good, physically and emotionally. perfect.

then i c/t him for making eye contact, for being quiet and still, and started shaping him to rest his chin in my palm. i mostly used luring. usually i try to use targeting or shaping more than luring, but if there’s anything a stuck day teaches, it’s that you use what you can. when i offered the treat in my palm, i’d click when he put his chin in my palm to eat the treat. i did this many, many times. eventually, i pretended to put a treat in my palm, and when he went to get the nonexistent treat, i clicked for contact and treated in my palm. c/t for that, continued. sometimes actual treat in palm, sometimes luring with motion that suggested treat. after a while i shaped the beginnings of a chin target in palm.

as his eye contact got more frequent, i started introducing my hand signal for eye contact, which is ASL for “look into my eyes.”

it felt really good to be accomplishing something when i was able to do so little. i had gone to sleep with all sorts of schemes and plans to work on recall remediation, using the great outdoors and Premack principle stuff i’ve been learning on the training levels list, because barnum’s recall (meaning, coming when called) ranges from great to eh to abysmal/nonexistent. but today’s physical and communication issues put the kibosh on that.

sometimes, actually, it seems like the best training occurs without plans, without grand expectations, but just by using my instinct, my thumb on the raised clicker button, and whatever the dog’s willing to offer. life with disabling chronic illness is unpredictable, and as wheelie catholic put it in a blog recently, that’s the thing about access — it isn’t a problem until it is. much the same as with everything with a severely fluctuating disability — it isn’t an issue until it is.

suddenly, nothing could be taken for granted, and it forced me to get back to the fundamentals of clicker training: see what the dog is offering, and shape it using just a click and some food. no target sticks. no body movement. no voice. it granted me a great feeling of power and control, of communication and making things happen, on a day when i otherwise was pretty well powerless and struggled to make myself understood by the people around me.

i still missed gadget terribly, because we already had a working language, and because he could have actually helped instead of just offering a challenge to overcome. On the other hand, i did tell barnum’s breeder i like a challenge. be careful what you ask for.

Please comment, if you feel inclined.

-Sharon, Barnum, and the muse of Gadget (and Jersey)

One Lovely Blog Award

I was absolutely delighted to get a note the other day from Nessie, the blogger at Lipstick, Perfume, and Too Many Pills (a sick girl’s quest for normalcy) telling me she’d honored me with the One Lovely Blog Award!

Here it is:

Award and Art by Sara Faghani

Thank you, Nessie! Please visit her site and check out what she says about After Gadget and the other blogs she named.

The award was created in December 2008 by Sara [access note: following link automatically plays music] of Works of Art by Sara.

Here are the rules of the award, according to Sara:

1. Add the logo to your blog.

2. Link to the person from whom you received this award.

3. Nominate 7 or more blogs.

4. Leave a message on their blog, letting them know they are “One Lovely Blog”!

This is a terrific opportunity to point you to some fabulous blogs. I was afraid all my faves would already have been honored, but lo! ‘Tis not so! I am thrilled to be able to give back a bit to these blogs that have given me so much. It’s also been a lot of fun to stray from my usual topic of life with (and without) dogs.

Before I give my list, some brief explanation of how I picked. Most awardees say to pick blogs that haven’t already received the award and that are “recent discoveries.” Since I only started reading blogs around the time Gadget died, all blogs are recent discoveries for me!

I’ve noticed that others who give their picks often tend to pass the award on to other blogs with similar themes, e.g., Sara named other art blogs, and the blogs who led to mine were mostly disability or chronic illness blogs.

While I am not intentionally going out of my way to choose blogs different from mine, I decided to resist the internal pressure I felt to pick, for example, other assistance dog blogs or “non-controversial” blogs. I want to honor the blogs that I think are truly unique and well written, regardless of topic. That’s what I mean by “One Lovely Blog.” Not necessarily “lovely,” as in “beautiful” or “sweet” (though a couple of those are represented), but as in “Damn, I LOVE this blog!” These blogs give something special to the blogosphere that I haven’t found anywhere else. As you can see, my tastes are eclectic!

Accessibility of these blogs varies. Some are what I would consider accessible (such as FWD), and some have obvious access flaws, such as not including a detailed description of graphics, and some I’m really not sure how accessible they are. I was going to try to choose only blogs that I’d consider “more accessible,” but I ran into three problems: 1. The meaning of “accessible” varies greatly depending on the reader’s disability. 2. My own grasp of what’s accessible to others is greatly hindered by my relative computer illiteracy, so I’m often not sure how accessible a given blog is to a given person with a disability. I just don’t grok how the software interfaces with the disability. 3. I haven’t come across that many blogs that I love which are also more-than-usually accessible. (A sad commentary.) However, I encourage you to comment if you go to one of these blogs and find it accessible to your particular disabilities, as this would be good info for all of us. Thank you!

Now, here they are, my picks for the One Lovely Blog Award! Please visit them and enrich your blog-reading experience!

1. FWD/Forward (Feminists with Disabilities for a Way Forward)

This is the only blog that I actually subscribe to, which is saying a lot. I always feel overwhelmed by too much email (who doesn’t?), and yet I read this blog — which sometimes contain multiple posts — every day. FWD is the smartest, most diverse, thoughtful, informative, honest, and ethical blog I’ve come across. There are several bloggers at FWD, and they really work their asses off to provide quality material. FWD has made me rethink what language I use and how I’ve set up my blog for accessibility, and taught me much about politics, the internet, and so many other things I can’t even list them. It often gives me a laugh and much-needed affirmation, too. If you have any interest in feminism or disability rights (and other social justice issues), this is the blog for you. And if you are not that interested in feminism or disability rights, then all the more reason to check it out and learn a little something!

2. VirtuaVet (Online Pet Health Consultations, Coaching and Philosophy)

VirtuaVet is Doc Truli, and she is Truli wonderful. She is a small animal vet, but has worked as an ER and livestock vet, and has had more species of pets than I could imagine! The blog is written beautifully, with great explanations — often with accompanying pictures — for the layperson. Yet, Doc Truli never talks down to her readers. There are quirky posts that cover veterinary issues I’ve not seen anywhere else, such as “Snakes Are People, Too!” and “Fat Dachshund” (the latter of which is one of Doc Truli’s occasional rants against the pet food industry, which is awesome). Not only is VirtuaVet fabulously informative, it also deals with ethical issues. One of my favorite posts starts this way: “I believe your decisions regarding your pets’ care are practical, ethical, moral, and spiritual decisions. Therefore, my advice and approach is unique in veterinary medicine. I love animals to an obsessed, crazy degree.  But I do not adore, love, or idolize medicine.” If only more vets (and MDs) felt this way!

3. GenderBitch (musings of a trans chick)

I discovered GenderBitch at questioningtransphobia, where she is a guest blogger. As GB’s name suggests, this is an angry, funny blog that deals with gender. To be more specific, it mostly deals with transgender issues and transgender oppression, with a lot of overlap with other issues, such as ableism, sexism, polyamory, etc. What I love about GB is how completely unapologetic it is. It is also raw, witty, raging, well written, sarcastic, intelligent, hilarious, geeky, and courageous. Two of my all-time favorite posts — ever — were written by Genderbitch, so I’m also including the links to these two posts: “But I Was Just Curious!” The Fail of Invasive Questions and Intent! It’s Fucking Magic! If you have an interest in queer and/or trans stuff, this is a great site to learn more, get worked up, feel shocked and saddened, or practically pee your pants laughing. If you are not familiar with trans issues, you can learn a lot from Genderbitch, including some terminology (e.g., the prefix “cis,” which essentially means “not trans”) which has not yet made it into “mainstream” vocabularies. But if I, with my cognitive impairment, can figure out, for example, what “cissexism” means, you can, too. Soooo worth it.

4. The Other End of the Leash

Author, behaviorist, trainer, and farmer Patricia McConnell writes a visually beautiful; emotionally open, honest, and lovely; and intellectually engaging blog about life on her farm, and particularly, her dogs. She describes her blog as “an ongoing inquiry about the behavior of people and dogs. I would like this to be a forum for people who are both intellectually and emotionally fascinated by the behavior of the animals at both ends of the leash. My hope is that it will become a place for an informed and thoughtful consideration of the amazing relationship between people and dogs.” She reaches her goal, and so much more. The pictures of the flora and fauna on her farm are delightful, and she always has something personal, yet universal (to dog owner/handlers), to discuss. I don’t read it that often, but every time I do, I think, “Wow, this is totally relevant to what Barnum and I are going through! I must come back here more often!”

5. The Canary Report: Sounding the Alarm about Multiple Chemical Sensitivity

Susie Collins’s The Canary Report is a very active blog of multiple contributors, forums, news articles, creative calls to action, and personal stories, all relating to the environment, health, or MCS. Susie always has a welcoming “Aloha!” for all commenters, and her humor, energy, and nonstop ideas keep the blog vibrant and fluid. Activism, advocacy, and education play a central role here, but there is also fellowship and personal connection. I recommend it to other canaries (people with MCS), as well as to people outside our world who want to learn how they can help protect themselves, their families, animals, and the planet from the harms of pollution, be it small-scale (chemicals in personal care products) or large-scale (the BP oil leak crisis in the Gulf).

6. Susie Bright’s Journal

I’ve had a soft spot for Susie since — as a co-founder of, and columnist for, On Our Backs, a groundbreaking women’s sex magazine — she helped me discover my sexuality in the late 1980s. A decade later, I was thrilled to have my fiction published in OOB (under different management) and then by Susie, herself, in two anthologies. But none of this is why I’m listing her blog here! Quite simply, Susie’s blog is terrific reading! The writing is crisp, clear, and well-researched. She is funny and thought-provoking. You can learn anything about sex and how it intersects with politics, culture, art, history, and more, fascinatingly and articulately spelled out by Susie Bright. She is most to blame for me spending way too many hours lost in obscure lesbian film history or her own tales of wild adventures with famous folks, simply because I clicked on one of her tweets.

7. Lymenaide (living in harmony with Lyme)

Ashley van Tol’s blog about living with Lyme and other tick-borne diseases is the most comprehensive personal Lyme site I’ve found. She has it all — musings on life with Lyme, recipes for those on restricted diets, a store to raise funds for Lyme awareness, calls to action, legislative news, and more. Where Ashley really shines and has made a name for herself in the Lyme community is her activism to raise awareness about Lyme prevention and treatment, and the need to treat Lymies with respect and understanding. She was the force behind four professional TV public service announcements (featuring well-known actors) for Lyme Awareness Month. Ashley manages to write a blog that is celebratory and joyful without distorting the realities of living with Lyme. It’s a site anyone can appreciate, whether they have Lyme or not.

8. Brilliant Mind Broken Body (living with Ehlers-Danlos Syndrome)

Last, but certainly not least, a blog from a fellow assistance-dog partner! Kali writes clear, fluid prose, designed to be understood by both those with disabilities and those who want to know a bit more about what it’s like to live with disability, and specifically, her disability of Ehlers-Danlos Syndrome. (On a personal note, I was surprised and pleased to find BMBB because I had a friend with EDS, and nobody had ever heard of it.) Kali’s posts range from “a typical day in the life of a service dog partner” (my favorite post of hers to date); to social justice issues — such as how -isms like fat oppression, ableism, and sexism interconnect; to silly stories about her quirky SD, Hudson. BMBB is also hosting the next Disability Blog Carnival — keep an eye out!

Please visit these worthy blogs, and give them some love.

As always, your comments are more than welcome.

Peace,

Sharon, Barnum (taking a break from being a blog topic this week), and the Muse of Gadget (missed more sharply in these summer months)

Bitten by the Bug: Lyme Awareness Month, Part I

May is Lyme Disease Awareness Month. I have many diseases, and they each have various awareness days or months, so I generally don’t participate — it’s too overwhelming. In fact, May is also International MCS Awareness month, which means I could do a double-header if I was up to it. Which I’m not, due to Lyme making me too nonfunctional. (See the segue?)

I have three-dozen draft posts on a variety of other topics for After Gadget that I’ve never published. But I’m determined to finish and post these Lyme Awareness Blogs, even if I can’t squeeze them all in this month. They cannot be more unedited pieces languishing in my draft folder. The topic’s too important.

My inability to publish with any urgency or regularity tells you a bit about living with Lyme. Extreme exhaustion, trouble with memory and word retrieval, and poor stamina are all part of the picture. So is severe and relentless body pain, insomnia, migraines (and all that goes along with them), dizziness, weakness, and much more. That’s about enough of that laundry list.

You see, there are a lot of other terrific Lyme Awareness Month posts that tell “a-day-in-the-life of a Lymie” or explain symptoms or elucidate the bacteriological mechanisms behind the disease.

I hope you will read a few.

I recommend checking out this funny one by a guy at Lymenaide; or buzzing by this SpiroChicks post showing a video public service announcement she made; or a trip to Lymebites with its variety of little posts and links to other good Lyme information; or this noteworthy Infectiously Optimistic blog, where Candice has provided many of The Voices Behind the Disease (including yours truly).

Mandy Hughes eyes uncertainty in her struggle with Lyme.

I definitely urge you to rent and watch the film, Under Our Skin. It is a phenomenal piece of work, and it will completely transform what you thought you knew about Lyme disease.

Another unusual aspect of Lyme is that it affects people and dogs; both Gadget and I contracted it. Many disabilities cannot be prevented, or cannot be ameliorated. Lyme, to varying degrees, can — that’s what makes awareness so crucial.

Gadget and I both had Lyme here, but I didn't know it.

The next three After Gadget blogs will specifically address Lyme awareness from the service dog perspective:

• How Lyme can affect your dog, and what you need to know about it (that your vet might not).
• How Lyme can affect you, and what you need to know about it (that your doctor might not). **UPDATE: I finally wrote Part 2, about my Lyme journey, which is so representative of so many people’s, unfortunately.**
• How Lyme transformed my experience specifically as a service dog partner.

Note: Since this blog series focuses on awareness, I’m honing in on the issues that I think are most important for you to be aware of. My goal is to prevent more cases of Lyme — especially chronic or untreated Lyme — in dogs and people.

So, I’m going to skip a lot of general information. For example, telling you the name of the strange organism that causes this disease will probably not be what impels you to rethink the limp that comes and goes in your dog, or that frustrating “flakiness” of your sister-in-law. It won’t change your mind about whether you are taking adequate precautions against tick-borne disease (TBD). On the other hand, I hope this series will.

You probably wouldn’t be here if you didn’t care about dogs, so Part I is dedicated to . . .

Part I: Awareness of Lyme Disease in Dogs

Disclaimer: This information is presented for informational purposes only. I am not a veterinarian or any other kind of health professional, just an informed consumer. These are my own opinions, based on my experience and research. Every dog — and their person — is different. Always do your own research, and trust your instincts!

Side A: PREVENTION

This Petside blog in honor of Lyme Awareness Month is pretty typical of most veterinary Lyme articles, or a bit better. It urges daily tick checks, gives basic (though limited) information on how to remove ticks (though this Lyme site does it better), and warns that Lyme is a problem in every US state and in every country worldwide.

American Lyme Disease Foundation map showing highest concentrations of Lyme-infected ticks.

Please reread that sentence, above. I cannot tell you how many times I have heard people say, “Lyme isn’t a problem here.” Doctors, too, frequently tell patients with Lyme, “Oh, we don’t have Lyme in [our state].” Unfortunately, many veterinarians believe the same thing. Some will even refuse to test for Lyme or other TBDs. If your vet does this, it’s time to get a new (or a second) vet. These are not diseases you can afford to stick your head in the sand about.

The sad reality is that nobody can say with confidence, “Lyme isn’t a problem here,” because it’s a problem everywhere. Although the dots in the map above show where Lyme-carrying ticks are most prevalent, dogs migrate as much as people. They move across the country and the globe by car and airplane for breeding, as pets, and for competitions. And wherever there are dogs, there are ticks.

I know people and dogs who have contracted Lyme in cities with almost no vegetation; in desert areas, like Arizona; and in frozen areas, like Alaska. Lyme is spreading into areas where it was previously extremely rare. Certainly, in endemic areas such as the West Coast, the Great Lakes region, and the East Coast, vets should test and evaluate for Lyme as part of routine check-ups. But even in other areas of the country, when unexplained symptoms arise (and even some otherwise explainable ones), TBDs should be ruled out.

If the ground is not totally covered in snow . . .

The Petside article, as is true of most pieces on Lyme, focuses on the hot summer months as the danger time for ticks. In fact, ticks emerge and start feasting on our dogs (and us) in the early spring and continue through the late fall. I’ve found ticks on my dogs even when there is still snow covering much of the ground.

I live in one of the most Lyme-endemic areas of the country. As of this writing, we have found over forty ticks on Barnum; at least half have been deer ticks. We started finding them in March. Last year, we found ticks through November. In fact, in my area, the worst tick times are usually April/May and September/October. Therefore, depending on where you are in the country, if you start checking your dog for ticks in May or June, you might be too late.

The Lyme vaccine was banned for human use,  yet . . .

The Petside article also suggests use of the Lyme vaccine. Most veterinary colleges and informed vets do not give the vaccine. First of all, there are multiple other TBDs that are potentially fatal to dogs, and the vaccine does not address them at all, so getting the vaccine is not a replacement for preventing tick-related problems. Further, the vaccine can cause Lyme-vaccinated dogs to contract an untreatable form of the disease, and it makes one of the most common veterinary Lyme test useless. In fact, several years ago, Jersey’s veterinarian — a very traditional vet — told me that, despite the huge number of Lyme cases their practice saw, their experience with the vaccine was that it was both risky and ineffective, and they now urged clients not to use it.

Tick prevention products not always “spot on.” . . .

Canine Lyme is transmitted by ticks (specifically by three species of ticks, the Deer Tick [or Eastern Black Legged Tick], the Lone-Star tick, and the Western Black-Legged Tick). Therefore tick-bite prevention is important. Most people (often urged by their veterinarians and groomers, who sell the products), use flea-and-tick pesticides on their dogs to combat ticks. It’s almost impossible to open a pet catalog or magazine or enter a pet-supply store without being bombarded by inducements to use these products. Advertising, of course, works. Flea-and-tick products are a billion-dollar industry. In 2006, Frontline and Advantage were the two top-selling flea-and-tick products. Advantage is made by Bayer. Only two Bayer products outsold Advantage that year — aspirin and a diabetes drug.

Unfortunately, putting Frontline or Advantix on your dog every month is not necessarily going to prevent your dog (or you) from getting Lyme. For one thing, these types of “spot-on” treatments require the tick to bite the dog to be effective; only after it’s stayed attached for eight-to-ten hours does the tick succumb to the poison it’s been drinking in the dog’s blood. Unfortunately, there is no scientific consensus as to how long a tick needs to be attached before it can transmit Lyme. Various “authorities” have told me 24 hours, 36 hours, and 72 hours, which strikes me as a pretty arbitrary range. Further, other TBDs can be transmitted within shorter intervals, such as five hours for rocky mountain spotted fever.

Equally important is whether these products work at all. I’ve been hearing from friends, neighbors, and veterinarians that formerly effective products no longer prevent ticks. These observations are affirmed by NRDC’s in-depth report, “Poisons on Pets”:

While pet products often are marketed for use against both fleas and ticks,
many are not particularly effective against ticks. . . .
Experts also have observed signs of insecticide resistance among ticks. They
simply are not as easy to treat as previously. . . . However, there is little or no hard data on the problem, since there has been no concerted federal effort to do the research and collect the data. . . .
Regional variation in resistance further complicates the picture. . . .
None of [even] the [tick-specific] products are completely effective.

Thus, new poisons are created, tested (in pretty nasty ways on puppies and kittens — just read the small print in the advertisements), marketed as “new and improved,” and sold to desperate consumers.

As someone whose life has been devastated by Lyme disease, it’s hard for me to argue against using something that works to prevent ticks to some extent, even if it doesn’t stop them all. I understand where the panic comes from.

However, as someone who is also chemically injured and made terribly sick by these toxic chemicals, knowing that I can be exposed at any time with dire consequences is also panic-inducing.

In fact, the Environmental Protection Agency has issued warnings about, and increased scrutiny of, spot-on flea and tick products, reporting that they have caused hundreds of deaths and thousands of cases of illness in dogs and cats. People, too, have been disastrously affected, especially small children, as discussed in the NRDC document, as well as numerous other sources.

Ultimately, knowing the risks to people, dogs, and the environment of tick pesticides, I urge safer options.

What are safer options? . . .

Solid science is emerging in the use of plant oils (essential oils derived from plants and trees) in repelling and/or killing ticks and other insects and arachnids. This EPA page provides an informational chart. I’ve done some research, and there seem to be several products on the market that repel ticks, fleas, mosquitoes, and other pests without toxic chemicals. Unfortunately, due to my sensitivity to (even natural) fragrances, I can’t use them, but for most, they should work. They generally require more frequent application than “spot on” treatments — usually once or twice a week, after getting wet, and before any expected exposure to ticks or other bugs. If you’re looking into a product that claims to be “natural” and only requires application once a month, suspicion is warranted. I don’t want to endorse specific products or stores, but this is a google search that should get you started. If you’ve used a nontoxic product that’s worked, please comment.

Even with a good, nontoxic tick spray . . .

Tick checking is crucial. The earlier a tick is removed, the lower the chances for it to pass an infection to your dog. Thus, every 24 hours at a minimum is best.

Many people think they tick check, but they are not doing a thorough enough job. For tick checking to work, every part of the people and animals at risk must be examined in detail, from toes to nose to tail to crown. On dogs, ticks’ favorite spots are usually the head (especially the ears), neck, shoulders, and legs. However, I have found ticks between toe pads, on lips, backs, anus, eyelids, and everywhere else on a dog.

If you have never found a tick on your dog, it’s because you’re not searching thoroughly.

If you live in an endemic area, and you don’t find at least several ticks per week on your dog, you are not searching thoroughly.

I know these are strong statements, but I make them based on hard experience.

For one thing, adult deer ticks are the size of a poppy seed when not engorged. Nymphal ticks are the size of a pin head when they are engorged. Most cases of Lyme transmission to humans — who are much easier to tick-check than dogs! — are caused by nymphs.

For another, frequently, other people tick check my dogs for me and tell me they didn’t find any, or they find  one. Often, if I check again, I find at least one more. Once, Betsy and I found a deer tick larva on Gadget, the very smallest of ticks. We happened to be at the vet’s when we found it. It was so small, I didn’t think it was a tick until after I pull it off and examined it extremely closely to see that it had body parts. It looked like a skin fleck. When I gave it to a tech to ask her to dispose of it, she said, “How did you find this?” in an astonished tone. If vet techs in an endemic area don’t realize how small a deer tick can be, what are the chances we all overlook ticks if we don’t check thoroughly?

It takes Betsy and me, working together, at least an hour to thoroughly tick check one dog. Of course, if we had small, white dogs with short, soft hair, it would be a lot easier than large, dark dogs with long wiry hair! Even if you have a small, pale dog, looking is not enough. You have to feel every inch of the dog. This can turn into a nice nightly ritual where the dog gets a full-body massage. Gadget used to love tick checks. We called it “dog cuddling time.” He’d get very relaxed and floppy. Sometimes he would moan with pleasure or fall asleep. Barnum enjoys jumping on the bed and receiving the attention, but he still is very mouthy and wiggly, which makes it much more time-consuming. (Often, the only way we achieve it at all is that I click and treat Barnum for relaxed behavior, using the techniques outlined in Leslie McDevitt’s excellent book, Control Unleashed, while Betsy does most of the groping. Then, when she finds a tick, I pull it off.)

Sometimes Betsy or I will carefully check a leg or an ear and find no ticks, and then we will switch, and the other will find one, two, or three ticks that were missed on the same body part! Again, this is because ticks can be smaller than the dot over the “i” in this sentence. Here is a page that shows a variety of ticks, both enlarged and actual size, and before feeding and after engorgement.

Even if you don’t walk in the woods . . .

I’ve heard a lot of reasons people think their dogs (and they) are safe from Lyme and ticks. These include that they walk their dogs in the middle of the road, that they don’t take their dogs to the homes/lawns of other people (such as me) who know there are deer ticks in the area, that they keep their dogs to their own lawn, and more. If only it were so simple. (Some people also believe that if they or their dogs are ultra healthy, they will be immune. Sadly, this, too, is not the case, although as I mention at the end of the blog, a strong immune system is a major asset.)

Most people with Lyme get infected in their own yards. Some put this figure at 70 percent of Lyme cases. There is a lot of information on how to make your yard less attractive to ticks. Some simple things are keeping the lawn mowed (or doing away with a lawn — clover is nice instead) and getting rid of dry leaves, brush, and other debris that harbor mice, as mice as the main carriers of Lyme to people. This New York state guide to creating a tick-free zone around your home provides more detail. It seems extremely unlikely that our dogs are any less likely to pick up ticks around their homes — that they are only acquiring these blood-sucking hitchhikers in the woods or near the ocean. In fact, ticks prefer medium-sized mammals like dogs (thus, some species of ticks are even called “dog ticks”) though ticks will feed on anything with blood that comes their way, including much larger mammals (horses) or birds, etc.

Being aware of weather and climate issues is also important. Ticks prefer a moist environment because dry heat is dangerous to their exoskeletons. Thus, the biggest Lyme outbreaks are often in coastal areas, such as Cape Cod and Long Island. Articles that focus on hiking and dog park might mislead you: don’t discount walks on rainy days — or just running outside to potty. In fact, during wet spells, we had ticks crawling onto our driveway and up our doors!

Side B: DIAGNOSIS AND TREATMENT

Prevention of tick bites is certainly important, but as is probably painfully clear by now, it is not always possible. Given this, it is essential to know the signs and symptoms of Lyme and other TBDs and to do your best to make your dog as resistant to illness as possible.

Know thine enemy . . .

Among both physicians and veterinarians familiar with Lyme disease, it is known as “the great imitator,” because its symptoms can mimic those of so many other diseases, and because Lyme — and other TBDs — can affect so many systems in the body. Because Lyme and TBDs can sometimes be fatal in dogs, or at the least can turn into chronic health issues, it’s important to know the symptoms.

In Lyme disease, the most common symptom is lameness. It is often a sudden onset, and it might move to different joints, come and go. Swelling or tenderness may or may not accompany the lameness. Other stereotypical symptoms of sudden-onset Lyme are fever, loss of appetite, lethargy, and weakness. Kidney, brain/neurologic, and cardiac symptoms — that were not previously noted — can also be signs. Dr. Schoen’s article, Lyme Disease: Fact or Fiction, is a good one, not least because he lives and works in an endemic area and has seen the many permutations this disease can take. WebMD also provides a concise, yet useful, overview of canine Lyme. If you want a broader survey, a google search using keywords Lyme dogs symptoms is effective.

There are too many TBDs for me to cover all the symptoms and syndromes adequately, but I encourage you to learn about, at the very least, ehrlichia, babesia, rocky mountain spotted fever, anaplasma, and bartonella and make use of these links. This tick FAQ has an extensive list of symptoms, as well as listing diseases that might be mistaken for TBDs. This page on canine TBDs provides the personal, and heartbreaking, background for the urgency in proper diagnosis.

One site to bookmark is Cornell’s “Consultant” search engine. You can search by the name of a disease or by the symptoms your dog is displaying.

Testing, testing, 1, 2, 3 . . .

While laboratory tests can certainly prove useful in diagnosis, in Lyme and other TBDs, they are not always the most useful tool. As previously mentioned, a dog who has been vaccinated for Lyme will usually show a false negative on certain tests. However, it is also possible for a dog to have Lyme or another TBD and for the test to come back a false negative. This is why it is so important to know the symptoms, to be aware of your dog’s level of tick exposure, and to know the prevalence of the different tick diseases in your area. If enough signs point to a TBD, and especially if your dog is really sick and/or your veterinarian is not sure of the diagnosis, it is often prudent to treat for that disease and see if there is a response.

There is also controversy about when or whether to treat when a dog tests positive for Lyme. The conventional wisdom until very recently was that the great majority of dogs who are exposed to the bacterium that causes Lyme, and who therefore have antibodies for Lyme disease, don’t actually become sick. Many vets, therefore, did not (and most still don’t), treat a dog for Lyme unless she is showing obvious symptoms.

However, new studies are showing that dogs who appear to be asymptomatic might actually be experiencing symptoms undetected — either subtle clinical symptoms or those that only show up on lab tests. In fact, the infection might cause serious long-term damage if untreated even when there are no known symptoms. This article presents this new information. It is the best I’ve read on this aspect of Lyme in dogs; please read it, and bring a copy of it to your vet.

The Great Imitator . . .

Because Lyme tests are not always accurate, and because TBDs can resemble so many other conditions, if your dog exhibits symptoms that stump you and your veterinarian, it’s important to raise the question, “Could this be Lyme and/or another TBD?” In fact, even if your vet arrives at another diagnosis, you might still want to test and/or treat for a TBD if the symptoms are suspiciously similar. For not only might Lyme be masquerading as arthritis, a heart condition, or another condition, it might also be part of the clinical picture along with another disease.

This was the case with Gadget. When the ER vet told me she was pretty certain Gadget had lymphoma, she also said it could be a tick-borne disease, so we ordered a C6 ELISA test for Lyme or a Lyme PCR, if possible — a more accurate and detailed test than the in-house SNAP test — and a complete TBD panel from Idexx. As it turned out, while Gadget did have lymphoma, he also had a Lyme titer that was literally off the chart; it was above the highest titer level the C6 tested for. Treating his Lyme did not save Gadget’s life, but he responded very well to treatment with the antibiotic, doxycycline. His quality of life during his last few months was tremendously enhanced by treatment for Lyme. His energy and movement improved greatly. I only wish I had realized sooner that the slowing down I’d attributed to age and hypothyroidism was probably actually related to invisible joint pain.

Holistic and Conventional Treatment Approaches

Even among practitioners and clients who try to avoid medications, especially antibiotics, when not absolutely necessary, there is a near consensus that Lyme and other TBDs require “the big guns.” In fact, in my experience, many vets are not as aggressive as they should be when treating Lyme. The microbe that causes the disease is complex and tough. It often remains in the dog’s system even after a short (or even a long) course of antibiotics. Those who have been “in the trenches” of the Lyme life — be it human or canine or both — have learned the hard way that it’s best to hit this disease hard, fast, and sustained. For many vets and owners, this means combining antibiotics with other modalities (herbs, acupuncture, homeopathy) to fight the microbes with all possible weapons.

The best antibiotic to fight Lyme is doxycycline, with two exceptions. One is if your dog is allergic to this drug. If he is, amoxicillin is considered the second-best choice. The other is if you have a puppy whose bones are still forming. Doxycycline can interfere with calcium and affect bone growth, so this is something you and your vet will have to weigh. Treatment should be five milligrams per pound of body weight for at least two months. If your vet wants to take more of a “wait and see” approach without a darn good reason, find another vet!

If you live in a Lyme endemic area and/or you are unable to use any form of effective tick preventative, please take whatever steps you can to help your dog’s immune system fight off infection. While everyone wants their dog to be as healthy as possible, it’s worth noting that the microbe that causes Lyme disease attacks and suppresses the hosts immune system as soon as it begins to colonize. According to Stephen Buhner, the author of Healing Lyme, the degree to which someone gets sick with Lyme disease after exposure to the bacteria — both whether they get Lyme disease and how sick they get — is directly related to the strength of their immune system.

There are two approaches to applying this information. One is ensuring that your dog is as healthy as possible. This means the healthiest possible diet, the right balance of exercise and rest, freedom from stress when possible, and protection from harmful elements, including excessive vaccination, medication, pesticide, and the like. Again, some might also choose other health care modalities to shore up your dog’s immune system.

The second approach is to give your dog herbs (some use tinctures, others dried herbs as capsules) specifically shown to help prevent Lyme or to treat early-stage Lyme. This way, if your dog is exposed to Lyme-causing agents, you might head off the disease before it gets a foothold. The herbs in this list are sarsaparilla, cat’s claw, andrographis, astragalus, and resveratrol (Japanese knotweed — not the grape extract sold under the same name). Obviously, to learn the proper administration and dosage, you should consult an herbalist experienced with canine Lyme.

While Lyme-fighting supplements and a superbly healthy lifestyle can go a long way toward prevention of Lyme — or of chronic Lyme — they are by no means guarantees. Please don’t think that you don’t need to tick check just because you feed raw, don’t vaccinate, and don’t use pesticides. Anyone can get sick from this nasty, stealthy bug. By the same token, if your dog does get sick, please don’t blame yourself. We should all do the most we can to be aware and take preventative measures, but in the end, luck plays a factor, too.

Thank you for reading this long post!

May this information remain strictly academic for you and your dogs, for years and years to come.

As always, we welcome your comments and questions.

-Sharon and the muse of Gadget, with Barnum (the fast-growing, and so far, healthy, puppy)

Back Back Back: A Year Ago Today

Back, back, back
In the back of your mind …

When you sit right down in the middle of yourself
You’re gonna wanna have a comfortable chair

-Ani DiFranco

Backdrop

I’ve been feeling depressed lately. I thought it was mostly health stuff. Ten days ago, my doctor told me that my complete blood counts (CBCs) were showing abnormalities, and that I had to stop all treatment for Lyme disease and coinfections — eight medications in all, including intravenous and intramuscular antibiotics — because medication toxicity was the likely culprit. If my blood work was normal for a month, we could discuss how and which treatments to resume. If it didn’t, I’d need to see a hematologist. She added that if my medications were not the problem, the cause might relate to “bone marrow,” such as “leukemia.” Terrific.

I had the leukemia flag waved at me a few years ago by a doctor trying to convince me to go to the ER, which I’d been refusing to do. His scare tactic worked. I went, and it turned out to be a lab error, as I’d expected. In this case, we have several weeks of abnormal tests to prove it’s not lab error, and I really like my current doctor, but I think casual cancer references should be illegal.

Background

A few days ago I received copies of the blood work my doctor’s concerned about. Some of the things that were wrong, such as abnormal lymphocyte counts, reminded me of reading Gadget’s CBCs. In fact, the reason I can decipher a CBC is that after Gadget started chemo, I studied his every week. I researched what each abbreviation stood for and what it could mean for his health. I bought veterinary manuals. I learned all I could about canine lymphoma and its treatments. He ate a homemade cancer diet and received Western and Chinese herbs, supplements, acupuncture, and chiropractic. The average life expectancy of a dog on Gadget’s chemotherapy protocol (Madison Wisconsin or CHOPP) is a little over a year. Gadget lived half that.

When Gadget was diagnosed, I also had a feeling of foreboding — about myself. Even as I was sure I could beat the odds for him, I had a bad feeling about what it would mean one day for me. Gadget and I were as close as I thought it was possible to be (until we got even closer, during the months he was sick), and we shared many of the same health problems: food sensitivities, bad reactions to drugs and chemicals, neurological issues, thyroid problems. I had raised him as healthfully as I thought possible. Like me, he was exposed to no pesticides, no cleaning chemicals, no preservatives or additives in his food. We lived in the country, and he drank clean water and breathed clean air. With his lifelong health problems, I’d always known that the longevity deck was stacked against him, due either to genetics or his early life. I suspect he came from a puppy mill. Still, I had never thought it would be cancer that would take him from me. My friends and family were similarly shocked: “Cancer? No, it can’t be cancer. Not Gadget. Not with the way you care for him….”

When I accepted that it was cancer, I thought, “I’m next.” A lot of people with MCS get cancer. I don’t know how often it’s directly related. In some cases, it’s clear that the chemical injury that caused the MCS also led to cancer. In others, it isn’t. Cancer is so common in the general population, it might just be coincidence for most. Regardless, with all my own illnesses and my history of chemical injury, and the fact that I got sicker instead of better despite all my efforts, when Gadget’s diagnosis was confirmed, it was hard for me to shake the feeling that it meant something for my health too. After all, we were two parts of the same body/soul, with so many of the same obstacles thrown in our paths. Some part of me settled into a silent conviction that it was my job to care for him until it happened to me, too.

Then, all the work of battling cancer distracted me from myself. Focusing all my energy on Gadget’s physical health and his happiness kept me too busy for the next six months to allow those thoughts again. When he died, they resurfaced, but I pushed them away. Until now.

Backslide

As I wait out this month for my test results, my symptoms charging back as treatment is withheld, I’ve become depressed. At first, I wasn’t sure why. There are a lot of potential reasons: Feeling sick feels bad, in itself. Not knowing why I’m doing worse — is it the tick-borne diseases letting loose, or is it something else? — is scary. If it is Lyme & co., will I be able to return to treatment, or will I spiral back down to where I was two years ago, back to a life of severe loss of function and intractable pain that felt marginally bearable largely because of Gadget? Could it be that mood/behavior changes, which can include feelings of hopelessness, had returned along with my other neurological symptoms? In this case, how could I know which of my feelings were “real” and which were the bugs eating my brain?

Backtalk

You might think that Barnum would cheer me up, but I’ve actually found raising him in the shadow of my grief to be confusing. Sometimes, I feel joyful, triumphant, and proud that despite my inexperience with puppies, his challenging mixture of personality traits (to be enumerated in future posts), and my significant — and currently, extraordinarily unpredictable — limitations, we are managing to make a go of it. Other times, I am so angry with myself and wracked with guilt by mistakes I’ve made or frustrated by his puppyhood — the concepts he doesn’t understand, the final steps of housebreaking, the exuberance that just isn’t fun when it involves bodily harm or the barking zoomies at 3:00 A.M. — that I question whether getting a puppy was the right decision. I argue with myself:

Me 1: “Gadget wasn’t like this.”

Me 2: “But Gadget wasn’t a puppy when you got him.”

Me 1: “But I never questioned that Gadget would be a great service dog. We struggled with a lot of things, but I had total faith that we’d be a team.”

Me 2: “But that was partly ignorance! You didn’t know all the things that could go wrong. Now you know so much more about the many reasons a dog can wash out, and how a dog has to want to work. Back then, you just took for granted that a dog that had more gusto than Jersey would love to work. Plus, you have more disabilities now, which makes it harder to raise and train Barnum and ups the ante of the number of tasks you’ll want him to learn.”

Me 1: “Ugh.”

Backcountry

I’ve just finished listening to a book called Merle’s Door: Lessons from a Freethinking Dog, which is a deeply moving book about an intensely close relationship between a rescued stray and the author, Ted Kerasote. Although Merle was not an assistance dog, he and Kerasote had a working partnership, as well as a deep and intimate love. Kerasote is a subsistence hunter in rural Wyoming, and Merle helped him locate elk and other game. All of Kerasote’s meat was what he procured from the wild, so they weren’t just sharing a game; they lived off this teamwork. The subject matter, alone, was bound to make me continuously reflect on my relationship with my dogs, especially Barnum and Gadget. Kerasote — who gave Merle freedoms impossible for most dog owners — challenges a lot of traditional, as well as current, thinking on dog care and training. Combined with my struggles and deep feelings of inadequacy as a puppy raiser, this focus kept me comparing myself and my canine relationships with that of Merle’s idyllic life with Kerasote.

Finally, of course, any book about the life of a dog must end with the death of that dog. Merle died of cancer, and the journey of illness and death that Kerasote traveled with Merle was very similar to what Gadget and I experienced. I finished the book yesterday. For the past two days, leading up to Merle’s death, I cried over and over. When I otherwise had no energy to move, I’d lay still except for the sobs jerking my body. I frequently envied Kerasote’s abilities and resources, physical and social, to care for Merle and provide a death and funeral for him that I was not able to provide for Gadget.

Backtrack

I thought these were all the reasons I’ve been thinking about Gadget more than usual while simultaneously feeling his presence in my memory murky and hard to grasp — as if Barnum and Merle somehow were obscuring who Gadget really was, what our relationship was, why I felt this pain under my breastbone that I could not name. Until today, I hadn’t known what to do with it but obsess darkly, eat chocolate, and cry.

Then, Carol, my PCA said, “Today is May 8, isn’t it?”

I rarely know the date; even the month can be a stretch. I checked my calendar and nodded, yes, the eighth.

Carol said, “It was exactly a year ago that I took Gadget to the hospital, wasn’t it? May eighth? ”

That stopped my heart. It was.

Back, Back, Back

I was very sick that day, like today, like yesterday. I couldn’t speak or get out of bed, and I was in a lot of pain. Gadget’s eye had looked pink the night before, and I had flip-flopped over monitoring it at home, taking him to the ER, or taking him to a regular vet. On the morning of Friday, May 8, 2009, I sent Gadget to VESH (Veterinary Emergency and Specialty Hospital) with Carol. Part of what decided me was that VESH had an ophthalmologist on staff. Even though she was not scheduled that day, I was assured she could be consulted if necessary. I had a history with SD eye crises: Jersey had glaucoma, a common problem among Bouviers, and even though I had taken her to several vets from the time I adopted her (long before it was an emergency), it had been misdiagnosed repeatedly. By the time it was diagnosed, the affected eye was permanently blind and terribly painful and had to be removed.

Jersey's blind side -- the missing eye hid by her fall (bangs)

Afraid Gadget might relive this trauma, and frustrated by my helplessness at not being able to accompany him, I spoke at length to the receptionist at VESH via HCO relay, stressing the importance of getting Gadget’s intraocular pressure checked on both eyes and compared to each other. I told her that glaucoma was a breed problem in Bouviers, that a reading within the “normal” range should be suspect if it is still much higher than the other eye, and I asked the examining vet to call me by relay during or immediately after the exam. She assured me that they were very familiar with assessing and diagnosing glaucoma. This eased my mind slightly.

If only it had been glaucoma.

Backhand

I waited. It felt like forever until the phone rang. It was Dr. C. She was the doctor who had treated Jersey when she was dying of multiple-organ failure from unknown causes in 2006. Jersey was thirteen then, retired, and whatever killed her, either an extremely fast-moving infection or cancer, at least she’d lived a long life and didn’t suffer a protracted illness. Nonetheless, I hated hearing Dr. C’s voice. I hated her, irrationally because I associated her with Jersey’s death.

Within a few minutes, I despised her.

“Sharon, it’s good you brought Gadget in,” she said. She sounded cheery, and I thought her next words would be, “It is glaucoma, but we caught it in time.” Or that it was another eye problem that could be treated since we’d moved fast.

Instead, she followed up with, “Gadget has lymphoma.”

I was shocked. I couldn’t believe it. There must be a mistake.

I started crying, but she couldn’t hear me because we were on relay. Dozens of questions leapt to mind, but I couldn’t interrupt her, because we were on relay.

She continued, “If your dog has to have cancer, lymphoma is the best cancer to have.” She explained that, depending on treatment, he could have another two to thirteen months to live.

This was the “good” news? He had the “best” cancer? I wanted to reach through the phone and hit her.

Backtrack

Over time, however, I learned the truth of what she said. Most canine cancers strike quickly and leave no options for treatment or cure. Lymphoma is one of few that usually responds well to chemotherapy. Gadget had five good months on chemotherapy. We reveled in swims and hikes at the pond, romps with other dogs, walks down new paths, even some new skills — just to add interest and a sense of accomplishment to his life.

Clear skies, clear water, Gadget returns to me.

When another cancer struck — mast cell tumors — Gadget’s decline was swift and heartbreaking. He died November 19, 2009.

I feel robbed; a year ago, I expected to have Gadget here with me today. If Gadget had represented the mean, one year post-diagnosis we’d have one more month with him in remission. That was the average for the MW protocol at VESH: thirteen months. But, for there to be an average, half the dogs must live longer, and half the dogs must live shorter. Of course, Gadget could not sit in the middle of the bell curve, because Gadget was never average.

My sweet boy, I miss you. I want you back.

As always, we welcome your comments.

-Sharon and the muse of Gadget (with Barnum, puppy-in-training)

P.S. Right before I was about to publish this post I got a note from Rochelle Lesser of The Land of PureGold Foundation . This is a wonderful organization. They educate about so many crucial issues — working dogs, humane training, canine cancer, nontoxic pet care, and more. They also gave Gadget a grant to cover some of his cancer treatment, for which I was very grateful.

Currently, they are running a contest to raise awareness about the importance of nontoxic, real food for dogs in preventing cancer and other health problems, and I was astonished to learn that so few have entered! I am only one of two so far! Rochelle even did a touching quickpress about Gadget and the last birthday cake I made for him.

The first ten people who enter the Bone Appetit Recipe Contest receive a bag of free, nutritious dog treats! (And the grand prize is phenomenal.) They gave me strength in championing Gadget’s fight to survive. Please lend your support to this very important (and fun!) contest.

BADD: Q&A on Being an Assistance Dog Partner

Blogging Against Disablism Day“>

Today, May 1, is international Blogging Against Disableism Day. So, this blog will be a bit of a departure from the usual. Actually, since I’ve barely been blogging since Barnum arrived, any blog is a departure these days! But I’m very motivated to get this one out because I’ve been looking forward to participating in BADD.

(By the way, Barnum is doing really well! I love him to bits. I keep wanting to blog about this or that exciting or adorable or heartbreaking thing, so I have many partial posts. They won’t be in chronological order, but I’ll get them up eventually!)

In case you are wondering, “disableism” is the term used in most countries outside the US for what we, in the US, call “ableism.” [The preceding link has a nice, succinct definition of ableism, but you can find many others that go into more depth.] If you don’t know what either of these words mean, here is your chance to learn!

When I was writing up my FAQ, there were a lot of comments and questions I wasn’t sure if I should include or not, but they are perfect for BADD, so here they are. (Additional comments and questions, not as closely related to ableism can be found on the FAQCC page.) Some of the questions below are direct quotes, but most are either paraphrases or compilations of the same type of question or comment I’ve heard many times. Because Internet communication and face-to-face communication tend to be different, some are comments I read online (community forums, Facebook, here at After Gadget), others are questions I’m asked “in real life,” and many are a combination.

Warning: It’s pretty hard to address some of these issues without sounding a bit snarky. (Or way snarky.) But I’ve noticed that most blogs err on the side of snark, so hopefully you’re used to it. Nevertheless, this post is aimed at informing those who need informing, amusing and affirming my comrades, and yes, allowing me to blow off some steam on a few pet (pun! — see below) peeves. If  you’ve said some version of the things I don’t like, it doesn’t mean I don’t love and appreciate you. After all, Gadget wouldn’t have cared, and he was an excellent judge of character. It just means, we’re all learning.

Frequent Questions and Comments on Being an Assistance Dog (AD) Partner

General Questions and Comments

Q: Who trained your service dog (SD)?

A: I did. Yes, me, a disabled person! I train my own dogs!

Q: That was sarcastic and overly emphatic. How come?

A: I get asked this question a lot, and it gets tiresome, especially because usually the question is put to me this way: “Who gave you your service dog?” or “Where did you get her/him from?” or “Who trained him for you?” or “Isn’t it wonderful that they [assistance-dog programs] do this?”

These questions assume that because I’m disabled, I must be the recipient of charity. (And by the way, most AD programs charge for their dogs — many thousand dollars). I particularly find it irksome when someone asks who trained my dog after I have already said that I train my own service dogs. (Yes, it happens often.)

To sum up: The frequency of this question, the patronizing tone which sometimes accompanies it, the astonishment with which my answer is usually greeted, and the fact that people ask it after I have already told them I am my own dog trainer is insulting. It suggests that many nondisabled people have trouble wrapping their minds around the idea that a person with a disability (PWD), or maybe especially a person with multiple disabilities, is capable of training her own assistance dog.

The corollary is that sometimes, when I am interacting with someone online who therefore cannot see my disabilities, I will say I am a PWD raising a puppy to be my service dog, and they gush in response how noble and big-hearted I am to do this work. In this case, the nondisabled person has had to ignore the fact that I said I was disabled and that this will be my service dog in order to fit the idea of me being a nondisabled “puppy raiser” into their world view. When I correct their assumption, suddenly my dog-training efforts are no longer so laudatory.

Both these types of comments and questions are forms of dis/ableism. Again, I encourage you to please learn the definition of ableism. Reading blogs about disability rights issues can also help; there are some great ones on my blogroll.

Q: Isn’t there a non-offensive version of that question?

A: Yes, there is. Sometimes people ask in a neutral way, “May I ask who trained your dog?” or “Did you train him or get him from a program?” or something along those lines. If their response, on hearing that I trained him is not incredulous gushing, but treated as just another interesting piece of information, that is very nice. Sometimes people say something like, “You must be a good trainer, he’s great!” Of course, flattery will get you everywhere.

Actually, some people ask this because they have a disability (often a hidden one) or because someone in their lives has a disability, and they are wondering if an assistance dog might help them. I am very eager to give them information, including a leaflet with the contact information for an assistance-dog advocacy organization of which I’m a member. I often give them my own name and email address and encourage them to contact me.

Likewise, if the person is another dog-training fanatic, it can be fun to “talk shop.” I do like to meet up with other assistance dog partners when out and about because I’m pretty starved for “real-life” assistance-dog friends, but I understand that not everyone wants to get into an AD conversation every time they leave their house. (See below.)

Q: What kind of dog is that? Can I pet him? [Pet, pet, whistle, clap, shout, wave, offer treat.] Can I give him this biscuit? What’s his name? Where’d you get him? What does he do for you? Can I monopolize all your time and energy and breathing space to talk to you about your dog?

A:

Long answer: Do you see that I am using oxygen and a mask covering my nose and mouth? And that I am falling out of my chair with exhaustion? Did you know that once I get home, my PCA will have to help me bathe, change my clothes, wash my AD, and my powerchair because of all the chemical fumes that sink into hair and skin and fabric? Did you know that if you pet my AD, not only are you distracting him from his job, but you are also getting even more chemicals on him that we will have to shampoo off?

Short answer: I’m trying to buy something. Here’s a leaflet.

Non-Snarky addendum: I know that many AD partners like to interact with the public about their ADs. Sometimes I do, too. It depends on the situation (how sick I am, what the environment is, the tone of the interaction, etc.). It’s true that for many PWDs, partnering with an AD helps break down isolation, and that has been true for me, too.

I also think it makes a difference what questions you get asked and how often. For example, many AD partners find it particularly intrusive and offensive to be asked what their AD does, since this is often akin to asking details about their disability or daily living needs. If I’m already in a conversation with someone about my AD, and I think their question has a valid basis, and isn’t just nosiness, I might be okay with it. I also usually give examples of the most obvious and least personal tasks. However, bear in mind that asking, “What does your dog do for you?” could be like asking a stranger, “Do you have trouble getting up when you fall? Do you take medication that you need help to remember? Do you have a panic disorder that your dog assists you with?”

Another issue is since my SDs have been Bouviers des Flandres (usually with short haircuts I do myself), I am constantly asked, “What kind of dog is that?” When I answer, most people say they’ve never heard of them. I actually made a brochure called, “What Kind of Dog Is That?” after I partnered with my first Bouv, Jersey, just so I didn’t have to get stuck in long explanations about what a Bouvier is.

The moral of the story is that everyone is unique, and some people love to discuss their ADs, some people don’t, and everybody has good days and bad days, hurried days and mellow days. Also, bear in mind that almost all of us get asked questions or hear comments whenever we’re in public. So, if you want to approach a stranger about their working dog, try to limit your questions, and be prepared to gracefully take “no” for an answer. I recommend approaching with something like, “Do you have a moment to answer a question about your assistance dog?” That way, you acknowledge that the PWD has a life that is not devoted to being a spokesperson, and you’re giving them an “out” if they don’t want to talk. If you have a specific reason behind your question, I would open with that, which indicates that you don’t intend to take up all their time.

Questions and Comments Arising from Gadget’s Death and/or this Blog

Q: I am so sorry about the loss of your pet. I know just what you’re going through because I lost my pet dog, too, and I loved him so much.

A: Thank you for your sympathies. I’m sorry about the loss of your dog, as well. I have lost much-beloved pets, too, and it is very painful. The grief can last a long time and is sometimes devastating. In fact, it is often a worse loss than that of a human loved one because our relationship with our animals is usually entirely positive, without any of the anger, guilt, resentment, or other complications of human relationships.

However, Gadget was not a pet. He was my service dog.

I strongly disliked having Gadget referred to as my pet when he was alive, and because my loss has been so public, I find that since his death, I’ve heard him referred to as my pet (or my “companion” or “friend,” which are often other terms people use for pets) much more than I did when he was alive. It can be a little hard to take, hearing it so often.

While the “heart loss” of an assistance dog may share similarities with the loss of a super-bonded pet relationship, the working-assistant partnership and functionality loss are very different. The grief of pet loss is very real, but  it’s a different kind of loss in several respects. I can’t speak for all assistance-dog partners, but those I have talked to about this issue feel as I do: We hate having our partners called pets, and we hate it when non-AD partners say they know just how we feel.

Q: Why? How is the loss of an assistance dog different?

A: I haven’t come up with a short, simple answer to that yet, but I’m hoping that the accumulated posts here, over time, will be an answer to that question. Gadget’s death is the worst loss I’ve lived through, and that includes the death of one my best friends a year ago and multiple other forms of major loss.

To put this into perspective: The first three years I was disabled by chronic illness, I almost never left the house, and I often went many weeks at a time without seeing another human being. I lost my job and career, friends, much of my financial security, freedom, independence, social life, and on and on. And I also just felt physically very lousy all the time. I had two cats at that time, and they were my one source of physical contact, daily interaction, and love. When each of them died, it was very, very hard. I used to say, and I still believe, they kept me sane those first few years.

Yet, Gadget’s death feels 50 times worse. Sometimes people react to my disabilities as tragedies. I don’t feel they are tragedies; I feel Gadget’s death was a tragedy. I have never dreaded anything so much as I dreaded him dying. I honestly don’t know if I’ll ever completely get over it.

Q: I was trying to be supportive. What should I say instead?

A: I know you were, and I appreciate your kind intention. While I know you are trying to empathize by saying you have gone through the same thing, many of us feel more alone when we hear such comments, because we feel the person trying to comfort us not only doesn’t understand what we’re going through, but by saying that they do, we are cut off from saying how we really feel. I know I usually say, “Thank you,” to conform to social niceties and to spare a well-intentioned person’s feelings; then I try to avoid the topic with them after that. That feels lonely, too.

I hope you will make use of this information the next time you come into contact with someone who has lost an assistance dog. As to what words to use instead, more appropriate terms would be “partner,” “assistance dog,” or “service dog,” “guide dog,” or “hearing dog.” If you don’t want to use these terms, you can just say the animal’s name: “I’m so sorry you lost [dog’s name]. You must miss him/her terribly. Let me know what you need. I’m here for you.” That’s usually what I want to hear, and I find it hard to imagine another grieving AD partner would be put off by any of the above. In fact, I think those are good things to say regarding any kind of bereavement.

I also am fine with people — in comments here at After Gadget or in “real life” — telling me about their own feelings of sadness and loss when their dogs died, whether or not they were pets or ADs. It’s always okay to talk about your own feelings, your own experiences, and I can often tell from people’s tone how heartfelt their sympathies are. I have been moved by many of the comments here from those who have lost companion animals saying that my blog has touched them and reminded them of their own dogs. It is only when people start making comparisons, insisting that they know how I feel, or using “the p-word,” that I feel alienated.

(Other assistance dog partners: If you agree, disagree, have other ideas, etc., please comment!)

Q: Is it okay to post this link on my blog/website/Facebook/email to friends? I would have to list it under “pet loss resources” and you just said not to refer to him as a “pet”!

A: That’s okay. Really and truly. Please do spread the word. The more people who learn about and love Gadget, the better. I feel that Gadget’s death left a hole in the world, and I want more people to know how wonderful he was, and how much he is missed.

While AD partners often try to seek each other out for comfort and support when dealing with a loss, sometimes we don’t know others, or we are not that connected to the AD community, or we face communication or other access barriers. In fact, I turned to a variety of “pet loss” groups and hotlines. Some worked out better for me than others, but these things are very individual. A listserv of people who lost their dogs to cancer has been very important to me, and I’m the only AD partner in the group; however, I relate very strongly to most of what happens on the list and care deeply about the other people and dogs. Having a relationship with these people before our dogs died makes a big difference.

In fact, my impression is that most readers of After Gadget were not AD partners, but many have lost pet dogs; there is a lot about grief and loss that is universal, no matter the species or relationship. I am hoping that After Gadget will, in time, be just one of many easily accessed resources for grieving assistance dog partners — blogs, chats, lists, hotlines, etc. Meanwhile, we have to find each other somewhere, and pet loss resources are often where we try. I would appreciate it, though, if you indicated that Gadget was a service dog along with your link.

Comments and Questions Arising from Seeking and Raising My New Puppy, Barnum

Q: Do you have a replacement lined up?

A: In the AD community, we do not use the term “replacement.” Gadget could never be replaced. He was one-of-a-kind. It would be like saying, after your spouse died, “Are you going to marry a replacement?” We prefer the term “successor.”

Most also prefer the term “partner,” not “owner,” because an assistance-dog partnership is a team effort. Both members of the team take care of and support each other and work together toward their goals.

Likewise, a previous AD is “retired” or the “predecessor,” and contrary to popular belief, not all retired ADs are rehomed (or euthanized!). Some ADs stay with their former partner as back-up SDs, pets, therapy dogs, etc.

Q:

1. Who will raise your puppy for you?

A: 1. I will be raising the puppy.

2. Would you like me, a complete stranger, to do it?

2. No, I wouldn’t. Assuming I need someone else — someone nondisabled or less disabled than me — to raise my future SD is ableist, especially if you have learned anything about me and know that I have trained two previous SDs and also have helped other people (mostly nondisabled people!) train their dogs. Please read more on learning about ableism.

3. Would you like me to give you a random puppy, probably of a breed you are allergic to, from my neighbor who has done no health testing on the parents and has no experience in selecting dogs with the right temperament to do the type of assistance work you’re seeking?

3. No, I really, really wouldn’t. I spent years, literally, researching which breeder I wanted to get my puppy from this time around. There are not many Bouvier breeders in the US, yet I still had to do my homework. The breeder I chose knows the complete lineage of Barnum’s parents (which includes their personalities, health histories, and temperaments) and provides information on every health test she has run on them and their forebears. She is also one of a minuscule number of Bouvier breeders that have bred and selected service dogs.

Q: If you start with a puppy, won’t it take an awfully long time before the dog can assist you?

A: Yes, it will, and that will be the hardest part: expending so much energy while getting no help in return for a long while at the beginning. My original plan had been to do something similar to what I did when training Gadget: I adopted Gadget when Jersey was still working, and she helped me train him, and then she retired as my pet when Gadget was ready to take over working. For Gadget’s successor, I’d decided to get a puppy when Gadget was about seven or eight year’s old; that way I would have had Gadget’s assistance with training the puppy, as well as not having a gap with no canine assistant. However, two major things went wrong. One was that I became severely ill with Lyme and two other tick-borne diseases and had to focus on survival; therefore, I was in no shape to raise and train a puppy. Second, right around the time my health was improving, Gadget got cancer, so my focus had to be on his needs, above all else.

However, the waiting and trade-off was hard when I was training adult dogs, too. It seems to be par-for-the-course whenever one adjusts to a new assistance dog or when one is working toward finishing training. (I have heard from those with program dogs that even in that case, when starting a new partnership, it takes both team members time to acclimate to new routines, environments, and styles.)

However, this time, for the first time, I have several people, including my partner, who are helping me raise Barnum. Without them, I definitely could not handle a baby. In the past, I did all of the care and training myself (except for Gadget’s wonderful dog walkers, Deb and Cameron, whom he loved with all his heart, as do I).

And yes, I know I said above that the assumption that I couldn’t raise a puppy on my own was ableist, and now I’ve gone and verified that I couldn’t raise a puppy on my own, so let me elucidate: It is the assumption that is the problem. Types and severities of disability range greatly. I’m much more severely disabled now than I was a few years ago. Also, there is often an assumption (that word keeps cropping up!) that disabled people lead solitary lives, without friends, lovers, spouses, etc. Barnum is being actively raised by my partner, me, and my four PCAs — under my instruction — with additional support that I have rallied from my small, rural community.

I know several people with disabilities who raised their ADs from puppyhood who considered it a delight and wouldn’t have had it any other way. I know others who absolutely feel their lifestyle could not accommodate a puppy and have adopted adolescent or adult dogs or who have obtained program dogs. There are also people who did raise a puppy into an AD but who have decided that next time around they will take a different route. You might notice that the same can be said for nondisabled people: some prefer pups, some older dogs, etc. In fact, if you learn nothing else from this post, I hope this one fact will come shining through: all people with disabilities are unique, just like all nondisabled people are unique! In this way, we are all exactly the same! (Ooh, a paradox.)

Q: Oh my goodness! How will you manage without a service dog until the puppy is full-grown and trained? Can’t I help you get a trained service dog right now? I barely know you, but I am so worried about you!

A: I very much appreciate that you understand that service dogs are not pets, and that my independence, safety, freedom, and quality of life are inextricably connected to my partnerships with my service dog. When people “get” that this loss is not the loss of a pet, that can feel very supportive.

However, treating my disability as a catastrophe and my life as a tragedy does not feel supportive. It suggests that you think I have had service dogs from the moment I became disabled, for example, which isn’t true for me or any assistance dog partner I know. It also indicates an assumption that I lack the resources to survive without a service dog, which is also not true of me or any other AD partner I know. (Hopefully you’ve already figured out that this type of response is yet another form of ableism.)

Those who choose to partner with ADs may experience better, richer, more independent, or safer lives with our canine assistants, but that doesn’t mean we will keel over and die without them. Often, to explain the role of our dogs, AD partners liken an AD to a piece of assistive equipment, such as a wheelchair, a cane, or an environmental control unit: we can survive without them, but life is much better with them. In fact, when an AD dies or retires, many of us turn to the assistive technologies we used to use before we were working with an AD. (I’ve discussed this in some of my previous posts, especially this one about the doorbell.) We might experience these technologies as inferior to a partnership with a versatile, thinking teammate, but they are extremely valuable.

Two other ways of coping with functional issues after the loss of an AD are increased human assistance, and — for lack of a better term — “making do.” I do need human assistants to get along, but my life is best with both a canine assistant and human assistants. For others I know, having an assistance dog allows them to live without PCAs or other human assistants (such as sighted guides). If they lose their AD, they may turn to human assistants until they have a reliable AD again. In my case, having more personal assistance for myself than I had when training my previous dogs will make me better able to raise Barnum. I’ve also enlisted the help of members of my household to pitch in with things like taking Barnum out to pee or playing with him, when I’m too tired or in too much pain. Betsy took him to puppy kindergarten because the class was not MCS-accessible. Having more people involved helps take the pressure off the pup and me, allowing us all to enjoy his puppyhood and training more fully.

Q: But why buy from a breeder? Why not adopt a rescue? Don’t you feel guilty that you’re contributing to dog overpopulation? Don’t assistance-dog programs contribute to the overpopulation and death of dogs?

A: This is a complicated situation, and I have wrestled with guilt over the decision to buy from a breeder. My previous dogs have all been older — two rescues and one “rehome.” However, my reasons for wanting a puppy this time around are solid, relating to my own health needs, my service dog goals, and what I think will be best for the dog. It’s just not the right time for me to have a rescue. I considered it, and I decided it wouldn’t be fair to the dog nor to me and my household. I’m hoping that eventually I’ll be doing well enough to foster and help train rescue dogs for others.

Another major issue in terms of adopting rescues is that I am allergic to most dogs, so I can’t adopt or foster a mixed breed (which eliminates 75 percent of shelter dogs) or any breed that is not hypoallergenic. This doesn’t mean it’s impossible for me to adopt a rescue — I’ve done it before, through Bouvier rescue — but it makes it more complicated.

If I didn’t have allergies, I would likely have adopted a mixed breed from the shelter for my first service dog, as they tend to be genetically hardier and healthier (because there is less inbreeding than with purebred dogs), and are usually very smart, to boot. But it’s very rare to find a hypoallergenic mixed breed. Plus, now I’m an incurable Bouvier fancier.

As to the issue of breeding programs at assistance-dog schools, this is complex. For one thing, many programs do adopt and train dogs from shelters, rescue, or donated from breeders. For another, the life of an assistance dog is not for everyone. If a program has a high success rate of graduating dogs with the physical, mental, and emotional traits that make assistance work rewarding, safe, and successful for them, and if they are humane and responsible in their breeding, training, and placement, that is probably the best way to go for them.

In my opinion, the crime of dog overpopulation (and thus, death) is caused primarily by puppy mills, which are too horrible for me to discuss here, and secondarily by people who breed their pet dogs without awareness of the larger consequences.

Q: Why don’t you get a service dog who is already trained? Wouldn’t it be easier?

A: Yes and no. It’s complicated. I’ve posted the long version of the story in my “About Sharon’s Dogs” page. For this BADD post, however, I do want to briefly make three points that do relate to ableism (and which I discuss more fully and less pedantically on the other page):

1. I tried to get a service dog through a program, and I couldn’t. This was for two reasons. The first is that no program could or would train a dog to fit my disability needs, because my disabilities were not “mainstream” enough. Fortunately, the AD world has changed a lot since 1998, and many more types of disabilities are now seen as appropriate for service dog work. The second is that no program would accommodate my disability needs, which is extremely problematic for organizations that are designed to meet the needs of PWDs! This is changing, too, though not as much as I’d like.

2. I discovered, in the process of searching for and applying for programs, that there was an air of paternalism among many programs that really turned me off. A big component of the disability rights movement is self-empowerment — that we (PWDs) know our lives, bodies, and needs best. Sometimes this means that the people who are in the “helping professions” (doctors, social workers, those who work for public or private charities or benefits programs, etc.), treat us with less respect, understanding, or autonomy than we think is appropriate or healthy. While many assistance-dog programs work terrifically well for many people, a lot depends on the organization, the PWD, and the fit between them. I did not find a good fit in this regard; however, as I mentioned above, a lot has changed. Many new AD programs have sprung up that have a more “client-driven” focus, including programs run by PWDs or that teach PWDs to train their own ADs. I also think some of the “old guard” has changed somewhat to keep up with the times.

3. Once I discovered that I was good at and enjoyed assistance-dog training, I got hooked. There are challenges, but for me, the benefits of partner-training outweigh the costs. If someone tried to train my dog for me, I would feel robbed of an essential part of our partnership and of my life experience, as well as of the flexibility I enjoy to train or retrain to fit exactly according to my (often changing) disability needs and my lifestyle.

Q: You mentioned a struggle you’re having with raising your puppy. The problem is that you’re doing [fill in the blank], while you really should [fill in the blank thing that is either inappropriate or impossible for you to do].

A.

1. [Silence.]

2. Everyone loves to give advice about raising puppies, training dogs, raising children, etc., to people who are newly in the thick of it, disability or not. I have been guilty of this, myself. Unfortunately, usually unsolicited advice is obnoxious (again, disability or no).

However, there are some broader issues to keep in mind. One is that PWDs have historically received — and continue to, as much or more than ever — unsolicited advice from nondisabled people about our disabilities. The underlying assumption is that since we’re disabled, and they’re not, we must be doing something wrong, so nondisabled folks, who must be doing something right, can fill us in.

This urge is so widespread and obnoxious that when I was cartooning about life with disability, my most popular cartoon, bar none, was one that was a “fill-in-the-blank” card to people offering “helpful suggestions” about how we could cure ourselves. PWDs from all over the world and with every type of disability related to that cartoon. Before you give any advice to a PWD on any topic, think long and hard about whether this is something we might already have more information and perspective on than you do because we live with the disability, ourselves. Also, think about whether they have indicated in any way that they want your advice.

I’ve received many suggestions and pieces of advice since I got Barnum, and a few of them were useful (such as book recommendations), and many were not. The ones that stuck in my craw tended to be from people without disabilities or with different disabilities than me who were judgmental or ignorant around my disabilities.

For example, I was very stressed about how to get Barnum from his crate and out the door in the first few weeks of toilet training without either (a) allowing him time to have an accident or (b) running him over in my powerchair. I had tremendous anxiety about hurting a puppy with my powerchair. I literally had nightmares about it before he arrived. I was so afraid I would accidentally murder him in a horrific way by running him over in my chair that it was a factor in my decision as to whether to get a puppy or not.

My friends reassured me that I would not accidentally kill the puppy. Then Barnum arrived, and it turned out to be quite tricky. The easiest way, for others in the household, was to pick him up and jog to the door and deposit him outside. This did not work easily for me.

For one thing, for the first two weeks, he reeked so bad of the fragranced shampoo the breeder had washed him with (despite our washing him, ourselves, several times), that I couldn’t touch him or pick him up without having a reaction. If I held him, any clothes that touched him had to go into the wash. This added an additional layer of work and exhaustion — not to mention misery at not being able to touch and bond with my puppy without becoming ill — to an already difficult situation. Since I had to take him out every hour, I couldn’t pick him up and then change my clothes every hour!

There were also the issues of fatigue, balance, dizziness, weakness, etc., that affected being able to pick him up and whisk him to the door in my lap. Hefting ten pounds (and growing every day!) of wriggling puppy was not nothing for me. There’s also the fact that opening and shutting of doors can be tricky from a chair, and with a squirming puppy whose bladder can only last 30 seconds or less, the situation isn’t any easier.

It seemed to me that the best solution was to get a leash on him and then have him run behind me out the door. That way, I would know where he was (because of where the leash was), and I wouldn’t have to deal with the lap-related issues. Despite my extreme watchfulness, however, I did twice run over his paw, which was a terrifying experience for both of us, but which caused neither of us any lasting harm.

However, when I sought advice on handling the leash situation with a puppy who was still not used to wearing a collar, several people told me that I should just carry him! What the heck was wrong with me that I was trying to get a puppy to heel on command at nine weeks? (Of course, I didn’t care about heeling; I cared about not squishing him.) Someone even told me that I should not move my chair, ever, at any time, without first always making sure that he was nowhere near me. Well then, how should I get him to the door? Telekinesis?

Several people were quite blaming that I had run over his paw at all. Honestly, I don’t know any wheelchair user who has never run over their dog’s paw! I have run over several people’s feet, including my own! Certainly there must exist many wheelchair users who are much more graceful than I, who have better coordination, better memory and spatial abilities, more accessible homes, and no balance issues. Not all of us are born athletes! In fact, Betsy accidentally stepped on Barnum’s paw on a walk and felt just as horrible as I had when I’d run over his paw. Then I found in one of my puppy books, under life stages, “Learns to avoid being stepped on”! That made us both feel better.

So, this is my final point: All the people who gave me a hard time and/or told me how I should have handled getting Barnum from the crate to the door knew that I have a disability and that I’m a wheelchair user. Some did not know about the MCS, and at any rate, in my experience, only people in the severe MCS community actually understand severe MCS, no matter how much others may think they do. Still, is it really such a stretch to imagine that someone who uses a powerchair to get around in her house might have disabilities that would make it challenging or impossible to lean over, pickup a wriggling, increasingly heavy puppy, carry it through at least two doorways and to the outdoors, in winter, all in under thirty seconds? Might it have occurred to the people to whom I said, “I need to have him on a leash so I know where he is so I don’t run over him,” that I had good reasons for choosing that method? Did they think that having a disability made me unaware that I also am the proud owner of a lap?

Of course not. I’m sure they didn’t think of these issues at all. That’s the point: assumptions, again. Assumptions about what a PWD can or can’t do, and assumptions that the way a PWD chooses are not based in rational awareness of her own body and/or abilities and/or limitations. I have to say that, unlike most assistance-dog partners I know, I have very rarely been denied access to public facilities. Having an assistance dog has not kept me from passing through most doors. Yet, I still find that I frequently must ask people, when it comes to me and my service dogs, to check your assumptions at the door.

P.S. It’s a year later, and I read this terrific post, Service Dog Etiquette for Dog Lovers, at The Manor of Mixed Blessings, and I thought it was terrific. Please read it; if you are not an assistance-dog partner, I guarantee you will learn something. She also wrote this follow-up piece for people who were bothered by her shoe analogy, which I actually loved and commented upon.