Having Lyme disease is a debilitating experience, on that many of us agree. Many of us also believe passionately that it is possible to improve our lot or even cure ourselves. As a result, we often focus much of our energy on finding the right doctor, the right medication, the right path forward. I certainly have. The rest of my energy typically goes toward getting through each day and in fulfilling and finding joy in my obligations at home and at work.
What I failed to realize for far too long is that there is something else worthy of my attention that can also help me to improve, to get through each day, to manage my situation. I should have realized long ago … that there are tools for getting through tough moments, saving energy, and otherwise assisting myself through the days.
It was during a flare at work, when a colleague was helping me to his car to give me a ride home that I said, for the umpteenth time, “I need a wheelchair….” I was thinking … “Wouldn’t it be nice to be independent of this need, able to get home on my own and with my routine relatively unaffected by the flare? I could save my energy day to day and maybe reduce the frequency of flare ups. I could even sit comfortably without having to struggle to hold my head up on the bad days ….”
I had thought this before, but for some reason, this time, I decided to act on it. In fact, I suddenly realized — there’s a whole world of assistive devices out there that I should consider. I did my research — talked to friends with and without disabilities, found an online account of how a wheelchair can help someone with chronic fatigue, and made an appointment at the local assistive technology center to get advice. I wanted to know whether a wheelchair was my only option or whether I could feasibly manage a suite of different tools that would address different issues (holding my head up, mobility on my infrequent terrible days, saving energy, etc).
Throughout this experience, I struggled deeply with my own internal wish to run away from anything that would so clearly change my own self image and how others saw me. I forced myself to keep thinking and talking about it, and I kept doing research. I took advantage of an opportunity to have a power chair delivered to my office for five days so I could try it out. And I bought myself a cane that also functions as a seat, something I knew would be very handy for travel. I even brought a u-shaped travel pillow into my office (to support my neck on the tired/bad days).
In the end I learned a lot about myself and a little bit about what tools can best help me. The wheelchair was not an option. It helped a great deal — I discovered that when I reclined enough my pain would drop (I see a zero gravity office chair in my future :). I discovered that I could not recline to a position that both supported my head and allowed me to make eye contact with my students. I discovered the freedom in being able to get anything I needed without having to first ask myself — Is it worth the energy? Do I need it right now? Is there anyone else who could do me the favor of fetching it? Finally, I discovered that I don’t need it enough to overcome the sinking feeling in my gut I get whenever I think about using it.
The cane, on the other hand, has done wonders for me. Perhaps the wheelchair freed me up to accept something so much less serious … but in any case I have found it an invaluable tool when waiting in line, during hallway conversations, to help me when I’m dizzy, stabilize me as I get out of a chair, or just provide security on a long walk. The pillow is equally valuable but slightly less convenient to transport than the cane. If I slouch just right, the pillow gives me the perfect combination of support and eye contact.
These tools are a good start, though they don’t solve every problem. More importantly, they have helped me begin the journey toward a new way of managing my illness. It does not replace medicine, family, work, rest, and the many other things I have been doing, but it does complement them. I am considering consulting now and again with an occupational, rehab, and/or physical therapist for ongoing advice. And I hope that I will not repeat the mistake of forgetting to consider how technology can help me to make my own life easier.