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.