“I didn't want that job anyway. The commute was too far.”
“He’s just going through a midlife crisis. He’ll come crawling back to me."
“Although my legs are pretty much shot, at least my upper body works fine."But what happens when these little stories we tell ourselves don't turn out to be true anymore?
For the first seven years of my battle with MS, there was a clear line of demarcation. I was taking a direct hit in my legs, but my upper body was unaffected. I held my breath. I felt that as long as the disease stayed in my lower body, then I could handle it. I didn't want to think about the possibility of my upper body becoming involved. Instead, I just held my breath.
Then the first signs emerged. I noted this in my journal:
9/20/08Not long after, I began to sense more changes:
Playing poker with Kim’s parents- seemed to have a little problem shuffling. Seems to be some dexterity issue there.
I think I feel it in my hands a little when I write or type.The steady deterioration continued. In January of 2009 I asked my employer to purchase a program called Dragon NaturallySpeaking, so that I could dictate to my computer rather than type (I'm using that program right now).
In the spring of 2009, when I took my handcycle out for the first few rides of the season, it became apparent that the problem wasn't only in my hands, but also in my arms. I couldn’t peddle my handcycle nearly as far as I had the previous summer. So, what did I do? I shortened my route, of course.
In May and July of 2009 I made the following observations.
I’ve noticed considerable deterioration in fine motor skills. Left arm/hand worse than right. Noticing that I favor right hand now.
7/8/09Now things were getting serious. I mean- the remote control?!?! Today I’m relegated to being a right-hand-only clicker operator, which means I can’t be eating or drinking at the exact same moment I’m surfing the 900 channels on my big screen TV. This is a major inconvenience.
I am noticing continued deterioration in my hands. I have some difficulty manipulating my fork and knife at dinner. Hands feel a bit numb, not like no sensation but rather like no control. I notice it with the remote control as well. It is as if I am manipulating objects while wearing a pair of heavy mittens.
Other than handcycling, and channel surfing, I also enjoyed two other pursuits that required upper body strength. Here's what I noticed about those activities in the summer of 2009.
Went for short ATV ride with Zach, down by Carole’s house. I could still drive the thing, but due to arm and hand weakness it is not fun. I’ll keep one ATV for hunting, but won’t enjoy the riding, so will sell the other one.
8/16/09Today, I continue to ride my handcycle, just not very far. I still have the kayaks. I'll probably give that a try again this summer. I’ll just need to make sure there are 3 or 4 people to help me get out of the kayak and back into my wheelchair at the end. I sold both of my ATVs.
Went Kayaking for first time this year. Getting in was OK. Could not paddle very far- 10 minutes. Getting out was a job, but I had 4 helpers.
I tried not to think about what life would be like if the MS spread to my upper body. Clearly, holding my breath didn't work. But now that I'm here, and now that it's happening, I'm simply dealing with it in the best way that I can. I suppose I could feel sorry for myself, but I don’t…I can’t. It’s just not in me. The sun still rises and sets. I still wake up, enjoy the day, and then go to sleep. I have difficult moments and I have joyful moments, just like everyone else.
As many of you know, I'm inspired by my late mother. She was a quadriplegic with some limited use of her arms and hands (due to an accident, not MS). Her crippled hands had a distinctive appearance that I’ll always remember. In recent months, my own left hand has, when in a particular position or while completing a particular task, looked very much like hers did.
I must admit, given the uncanny way in which my physical condition has grown to mimic hers, I’ve entertained the thought that my entire disability may simply be a psychosomatic emulation of my beloved mother. I wish it were so, because then I could be cured with a handful of visits to a shrink. But, unfortunately, the lesions on my spine are not simply in my head, so to speak.
Postscript: When I look over this post, I have some concerns. I want people to understand- to feel- what I'm going through. I try to be brutally honest. But there are two responses that I hope not to elicit. First, I don't want pity. That's not why I'm sharing my experiences. I still have a wonderful life. Second, I don't want to come off as self-righteous. Just because I am innately capable of dealing with my struggles in a positive way, doesn't mean that I think any less of people who are having a more difficult time dealing with their struggles. After all, my piece of mind is a gift that I have been given, not a mountain that I have climbed, or a merit badge that I have earned.