My wheelchair

OH has become the craigslist master, finding free stuff in the ads that he needs to finish construction on our house. Not just bay windows, but hardwood doors, a complete closet system, even lumber.

And one of the things he recently found for free is a wheelchair.  It doesn't have its footrests, but when the humanitarian who was offering 4 free, used wheelchairs learned that I have M.S., he told OH that he would reserve the best one for me.

Ever since we went to Bellingham and used the borrowed wheelchair, I have realized how useful a wheelchair is to accommodate us together.  While I do have my scooter, a wheelchair allows OH to stabilize himself while pushing me.

When I was diagnosed in 1991, I was told to go home and start preparing to be in a chair soon.  I even saved some ratty Chuck Taylor Converse hi-tops to wear while in the wheelchair so that people wouldn't see me and feel pity, that everyone would know I used to be able to walk.

But as time went by, I stopped waiting for the possibility.  And I believed what the doctor told me in 1991, that I could assume the severity and progression of my disease could be gauged by the initial five years after my diagnosis.  Obviously wrong.

Now the wheelchair is folded up in the living room corner, calling to me.  I'm always aware and worried when I am hobbling around that I will fall down.  It's tempting to know that I could be less stressed about it by sitting down.

The author Nancy Mairs who chronicles her M.S. in books like Waist-High in the World: A Life Among the Nondisabled recounts that she had a serious fall on her head then decided she would "give up walking" after she "had another such mishap."

However I don't want to "give in" to the deterioration prematurely.  And "sitting on your ass" is synonymous for being lazy. So how will I know when it's time?

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My world is narrowing

I once read a book titled Wide My World, Narrow My Bed (about consciously choosing to live a happy and adventurous single life). I love that title!  It has stayed with me.  Lately I’ve realized that my situation has become the opposite: wide my bed–we sleep with dog and cats on a king-sized mattress–and narrow my world.   Because ihn recent years, I leave my home less and less.  My world is shrinking.

I’m not bringing this up to encourage pity or sympathy.  I’m trying to examine and explain it logically and with detachment. For example, I now work from home full-time, teleconferencing into the office for meetings and collaborating with co-workers on projects via e-mail and instant messaging (IM).

I am still an active member of the local chapter of my professional group, the Special Libraries Association (SLA), although I rarely attend meetings in person anymore.  I do serve as owner of our e-mail discussion list and I recently completed a two-year stint formatting, posting and billing for the local job listings on our web page.  For ths I even got an award.  Monthly we have our board meetings, with everyone calling in to teleconference.  

So for now I’m still able to volunteer my expertise and to work full-time.  

I bought a house near the coast, thinking that cooler weather would be better for me if my disease advanced. That is, in a worst-case scenario (which I now consider just a worse case scenario. You know, hope for the best but plan for worse).  [I can’t believe I’m at “worst-case” levels–you can always find someone worse-off than you.]

I use the scooter to get around, which helps with my waning mobility, but I’m also starting to be very sensitive to even minor increases of temperature and to experience more frequent bouts of extreme fatigue. From time to time my friends and family have pointed out that I’ve always been a homebody, that I’d have a harder time with this decline if I was an avid mountain climber or marathon runner. I suspect this would be true.  

But I’m thinking now about how I can take advantage of being less mobile, turn it into a positive. Like make better use of the telephone and my organizing skills.

One thought is to become a birthday monitor–keeping track of everyone’s birthday, age, anniversary; sending cards and keeping everyone else informed.   Another is to set up a telephone calling schedule to make sure I stay in regular contact with friends.  Also, from time to time someone will ask me if they can give my phone number to a loved one who is newly diagnosed.  I always say yes, but I’m remembering how surreal it is to be newly diagnosed and thinking I can be more proactive and call them.

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My diagnosis in review

Lately friends I used to work with or go to school with are contacting me after finding me on LinkedIn, little blasts from my past. And I started thinking about my life ten, even twenty, years ago. Would I have done anything more or differently if I had known for sure that my health would decline?

I was working as a waitress when I was diagnosed in 1991. I did yoga, got a motorcycle and kept my beat-up Converse high-tops with the idea that if I became wheelchair-bound I would at least wear them to show I used to walk.

As it became apparent that I wasn't going to be immediately crippled, I threw out the shoes and continued pursuing my love of libraries. I got my advanced degree in Library and Information Science in 1999. Always I was ruefully aware that my deterioration was a possibility but it didn't seem likely. I looked and felt fine.

When I first moved here in 2001, I used to walk several blocks down to the ocean with friends and to a nearby coffee-shop on the weekends. Very soon, I started to need a nap when I got home, that even the slight uphill trek back to my house tired me out. And that was only seven years ago. I couldn't do it at all now.

It's hard to know how to tell people that my walking has deteriorated so much, that I need a scooter to visit a farmers' or flea market. But I don't think I would've done anything differently, maybe just been more aware and appreciative of the things I was able to do at the time.

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