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)
After Gadget 