No Boundaries

by Dean Kramer
January 2003


My old friend Sue is in a nursing home. I put her there at her own request. Sue has always been a somewhat gruff hermit for, while she likes the idea of people, in actuality she finds most of them a bore. I could not imagine such a fiercely independent woman in a nursing home environment. Neither could she, initially. She told me her greatest fear was that she'd have to be polite for the rest of her life.

Nursing homes have always lurked at the extreme edge of my awareness of MS. I've heard of people with the disease who finally ended up in a nursing home (as it's often indelicately phrased). I've read stories about the experiences of such people. And there seem to be two extreme views on the subject among people with MS and their collaterals. One view states that you'd better be prepared for this eventuality and make your plans well in advance. The other view taken is that few of us will need a nursing home— not because of the MS, anyway, so don't be so negative! I guess no one questions the negativity of the situation. But I have begun to do so.

When Sue first entered the nursing home she felt that her life was over. She went deep inside herself and prepared to die. She actually worked at dying— lost her appetite, her systems began to shut down, and (naturally) she was withdrawn and detached from all that had mattered to her. She had me convinced that her final days were here. It seems that will alone was not enough to take her out of this life, though. Over the past two weeks as it became apparent that she'd be around for a while longer she began to create a new Sue to cope with nursing home life. She's doing an excellent job of it. She's not about to become a sweet little old lady who twitters at the thought of evening bingo in the activity hall. Instead, she's finding ways to be a crusty old codger in a new context.

One thing that has amazed me in my journey with MS is that most of us with the disease learn to find joy in our lives despite whatever restrictions we may experience. It's almost a Zen kind of thing. Like skilled athletes are said to "play within" themselves, we become skilled at living with MS by finding whatever we need inside to build a life. I can't run anymore and, sure, that disappoints me from time to time. But there are so many rewarding directions in which I can travel provided I keep an open mind and become willing to reinvent myself as my neurologic system requires. And with each acceptance and reinvention I push the boundary a little farther out. When I was healthy I thought having to use a wheelchair would be my cue to commit suicide. And as I began using assistive devices, realized I could live happily, and wanted to, the nursing home became my point of no return.

Now I'll have to look at that more closely. I ask myself why I'd want to place such a boundary on my life. Telling myself that I'll live as long as I have to live and however that may be, I'll attempt to put as positive a spin as I can on my experience. It doesn't cost me anything to give up cynicism and it makes my life a lot less dark. I'll try not to judge myself when comparing how I am with how I was or how I might be in the future. I guess those are my New Year's resolutions. I'd say more but it's almost time for bingo and I gotta go!