Posts Tagged 'tick-borne diseases'

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.)

How to Tick Check Yourself

Or, Humans Get Tick-Borne Disease, too!

Did you think that because the weather is getting cooler, it’s not tick season anymore? If so, you’d be wrong. In fact, where I live, the worst times of year for ticks are the spring (usually April through June) and the fall (usually October and November). In fact, after our midsummer lull of no ticks, last night I pulled one off my shoulder.

As I’ve said before, this is also not just a Northeastern United States issue. No sooner had I posted my instructive post on how to tick-check your dog, that I stumbled across a Southern blogger who is unintentionally misinforming her readership by saying, “Good news: if you live below the Mason Dixon line there is a relatively low risk of Lyme Disease. Y’all can breathe easy.”

Oh dear. The many, many people I know with Lyme disease and other tick-borne infections who live in Florida, Virginia, North and South Carolina, and Georgia could tell her it ain’t so. (One of the foremost Lyme doctors in the world is in North Carolina, and I know a slew of Lymies in the Virginia/DC area.)

As requested by various readers and friends, here is my how-to guide on tick-checking YOURSELF! (And your kids or family members, etc.)

As I’ve said in other posts on Lyme disease, it is best to check yourself once a day, every day that the ground is not completely covered in snow — regardless of where you live.

If you are too sick to handle that, try to check yourself every day that you go outside (even if it’s just into your yard, since most cases of Lyme transmission are from ticks picked up in one’s own yard) or if you have dogs, cats, or other animals that go outside and then come back in. If you are a wheelchair user, please refer to my post on when wheelies should tick-check themselves, as it’s different than for walkies.

Checking yourself for ticks is usually easier than checking your dog. For example, you don’t have to give yourself treats to allow yourself to handle your paws hands. There’s also less fur to search through.

Ticks will attach anywhere, so it’s important to check the whole body. That said, there are some areas they seem to prefer to attach, and even more importantly, where they might go longer undetected. These are areas that provide some protection or cover because they are in skin folds or creases or under hair, including

  • Between the toes
  • Behind the knees
  • In the groin
  • In the naval (belly button)
  • Under the breasts
  • In the armpits
  • Behind the ears
  • At the nape of the neck
  • On the scalp/under the hair

But, they can be anywhere. For example, the three ticks I’ve pulled off myself this year were on my scalp (the top of my head), at the nap of my neck (also scalp, because it was under my hair line), and on my inner thigh. In each case, these were dog ticks, not deer ticks, and they had been attached three hours or less.

Members of my household have found ticks on themselves or loved ones on their forearms, calves, backs, shoulders — just about anywhere. In fact, last night I found a deer tick attached to my upper arm/shoulder area. I had not been out of the house that day or the previous one, so it must have been carried in on the dog, who spends a fair amount of time in contact with me or on my bed.

In an ideal world, we’d all have a tick-checking partner to examine areas that are hard to see ourselves, and for whom we could return the favor. We’d also all be sighted, have range of motion, strength, and flexibility in our bodies and sensitivity in our hands. However, this is not always possible. So, you do the best you can.

As with dogs, it’s good to make this a habit. Setting a daily routine that follows a particular time of day or activity, and that follows a familiar path along the body can help you keep track of what’s been checked and what hasn’t. Use what works for you. I’ll give my household as an example.

Tick-Checking with Two People

We do nightly checks before bed. First, we turn on all the lights, so it’s as bright as possible. Betsy and I check the dog. She likes to check him first, in case any ticks crawl off of him and onto us. I don’t feel as strongly about it, because ticks don’t usually move very fast. It can be useful to put down a light-colored sheet while you check your furry household members, because a tick will show up more obviously there if it is crawling toward you.

Then, we do us. It’s best to get naked to tick check. You should check your clothing, inside and out, either before or after you check your body.

Because of my disabilities, we do our tick-checks on the bed. We start at the feet and work up. I extend my legs, and she looks between each toe on my right foot, then examines the top and sides of the leg. She lifts my leg in the air and examines the underside. Then, the same on the left foot and leg. Then the creases where my thighs meet my abdomen (ticks like creases and skin folds). I spread out my pubic hair so she can see under/through it, and also my labia (more skin folds). I don’t happen to know of women finding ticks on their genitals, but I know two men who have found them on their testicles, so I see no reason the same couldn’t happen with female “parts.”

Then we check my belly button, and I lift each breast, one at a time to check under there. (I have found ticks under others’ breasts before — it’s warm, moist, and hidden; ticks seem to like that.) Then my right armpit (and you should spread the hair around if you have thick hair there) and my arms, both sides. The same on my left underarm and arm.

I turn, and she looks at my back and my buttocks. We also check the external anus.

We spend probably the most time on the scalp, because hair obscures ticks, and because ticks like the scalp. If you have long hair, it’s important to lift it to check the neck, especially the nape of the neck.I lean forward with my face on a pillow. Because I have long hair now, Betsy starts on one side (checking in the ear and behind it), and sections the hair, feeling and looking all along one row, from the neck to the forehead. Then the next row, working her way like that to the other ear and side of head.

Since Betsy’s hair is very short, my job is easier. I start at the nape of her neck, pulling against the grain of the hair, using my fingertips along the scalp. I am feeling for any bumps or unusual protrusions while also looking at her scalp as the hair is moved. Checking ears, sideburns, etc., is important. I should add that although I’ve never tick-checked a man, if someone has a mustache or beard, it’s important for them to run their fingers through it and feel all their face and neck skin to make sure nothing is hiding under it.

If you are able to stand and/or sit up, you can make a lot of this go faster and easier by stripping and standing with your back to your partner. They can check your back, buttocks, anus, and backs of your legs. Then you turn, and they check the fronts and sides of your legs, abdomen, belly, genitals (if you’re male), breasts (including underneath), underarms, and all sides of your arms.

Then you can sit down to check between toes, genitals (if female), and head and scalp.

Checking Yourself, By Yourself

There are times Betsy or I have to check ourselves on our own. Here’s how we do it.

Betsy stands at a wall mirror. She checks all the parts of her body she can see herself, then turns with her back to the mirror to check her back and other areas she can’t see. Then she runs her hands over any areas she can’t see, such as back of legs and behind knees, etc. This is also how she does her hair — running her fingers over every part of her scalp.

I check myself in bed. The most important checking is tactile — I run my hands over every place I can touch on my body. When I have found ticks attached to myself, it has almost always been my fingers that discovered them before my eyes had any clue.

For any places I can’t reach well, or to double-check, I use a hand mirror — such as spreading my toes as much as I can with a mirror reflecting the bottom of my feet. This is also how I check the backs of my legs, under my breasts, and my groin and anus.

For my back, which I cannot touch all over, I use two mirrors — looking into one, with the other behind me. I use most of my energy to feel my scalp. You can think of it as a methodical scalp massage, moving your fingers all over your scalp as if you were lathering shampoo, and also feeling behind your ears.

The more you get used to feeling or seeing every mole, bump, or irregularity of your skin, the easier it will be to rest assured that you will know a tick when you come across one. If you are checking yourself, alone, and you ever feel something suspicious that you can’t get a good look at, find someone — anyone — and have them look at it or feel it and/or describe it. You may feel a bit embarrassed, but some awkwardness with a friend, roommate, or neighbor is worth preventing a tick-borne disease!

Sometimes I find it hard to motivate myself to tick check, even though — and possibly because — I know how serious it can be to have a tick attached to me. In these cases, I fall back on some of my positive reinforcement training and promise myself something enjoyable after — a square of chocolate, a movie from Netflix, a book on tape, a cuddle with the dog. Whatever makes it easier for you to begin and to be as consistent as possible — reward yourself and make it easier the next time around.

If you do find a tick, remove it just as you would from your dog. Get your tick spoon or tick key ready.

Very thin, lightweight metal tool, about half the length of a popsicle stick, tapered on one end with a V-shaped opening. The length of the tool has a slight creased in the center, so that it is mildly concave. It's attached by a metal-bead key-chain to a plastic magnifying class about teh size of a penny or nickel.

This is the tick spoon we have. I find it easiest to use if I remove the magnifying glass, as that just tends to get in the way.

I have used the tick spoon many times. I also have a tick key, but haven’t used it yet. It wasn’t handy last night when I found the tick on my shoulder, but I know where it is now, and I’ll try it on the next one I find.

Flat, metallic green object that has the shape and look of a key, except where the part that would stick in a lock would go is a key-hole shaped opening, round at the base closest to where you hold the key, with a very narrow neck at the tip.

The tick key. I haven't used mine yet, but from the video I saw at the link above, I think it is well-designed.

Before you do anything, take a few deep breaths to calm yourself. You want to act with care and deliberation.

Slide the tick key or spoon between the tick’s body and your skin, until the narrowest slit of the implement is wedged against where the tick’s mouth parts are attached. Slowly and deliberately pull back and up. You will feel a bit of a tug on your skin, as if you were pulling a burr off of your skin. When the tick comes from, hopefully you will see a tiny bit of skin in its mouth parts, which means you got it all and likely didn’t squish its stomach contents under your skin by pulling or squeezing its body. (Try to avoid that.) If it’s kicking and moving around, that is also a sign that you pulled it out whole and unmangled; you actually don’t want to scare or annoy or stress the tick, as that makes it more likely to regurgitate possibly pathogenic microbes into you due to its panic.

After you have removed the tick, it’s a good idea seal it in a zip-loc baggy. This way, if you decide to have it tested to see if it was carrying diseases, it will be in the best condition for scientists to examine. I usually double- or triple-bag the tick, because I don’t want to run the risk it could escape.

Wipe the area where the tick was attached with a disinfectant, such as rubbing alcohol, hydrogen peroxide, or another cleanser. I also use a skin marker to make a circle around the site. That way, if a rash or any other skin abnormalities appear, I will know if they’re at the site of the bite or not.

If the tick is completely flat and you are sure it was only attached a very brief time, chances are good it has not passed on any diseases. However, if it is at all engorged and/or if you’re uncertain how long it was attached, it’s a good idea to speak to or see a doctor right away. An immediate course of a week of doxycycline (an antibiotic), has been shown to reduce the rates of Lyme in people who are bitten by deer ticks.

Wishing you all a safe, healthy, tick-free autumn!

– Sharon, the must of Gadget, and Barnum, SDiT

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