Until You Make It

by Dean Kramer
May, 2007

I’ve paid careful attention to my MS. I’ve done the things recommended by both my doctors and by my friends successfully living with this disease. I’ve taken care of my symptoms with medication, diet, exercise, and rest. I’ve admitted being disabled by MS and have used assistive devices, when necessary, to accomplish activities that my body cannot on its own. I’d reached a comfortable level of acceptance—perhaps even a more than comfortable level of acceptance.

Long before I actually needed them I chose to develop the skills necessary for a successful life with disability. Statistics said my MS would worsen over time, no matter what.  I wouldn’t want to have to learn to drive a car the moment there was some crisis requiring me to drive, and I didn’t want to have to learn to handle a wheelchair the day I could no longer walk. So I practiced being disabled.

In my family we are all good at mimicry. My father was an excellent comic with a store of different dialects. His kids take after him. One evening long ago my (then) three-year-old  brother and my father were walking hand in hand on a city street when a man ahead of them made a rude noise. My brother accurately repeated the noise. He did it so well, and with such volume that the man turned on them. My father was hard put to convince him that so loud a noise had come from a little child who meant no harm and knew no better.

When I was a kid and the Beatles were taking the U.S. by storm I spent one summer pretending I’d recently arrived from England. I did my research. I learned enough about current affairs, history, and geography to back up my role with authority. People who’d never met me found me believable as British. I even met a woman from London who assumed I’d grown up in a part of that city associated with the accent I used.

I was convincing as a disabled person, too. I’ve always been one to throw herself obsessively into whatever project I’ve undertaken. (Our barn is testimony to that, filled as it is with the detritus of discarded passions.) As a disabled person, I talked the talk and rolled the role. People began to think of me as disabled. Allowances began to be made. I practiced long and hard. I did my research, learning about the politics, the culture, and the psychology of being disabled. I acquired the accoutrements.

Of course, to some extent I was disabled, though not as disabled as I expected to be. It wasn’t a complete misrepresentation. I thought of myself as a relatively healthy disabled person rolling along with a smile on her face and a snappy comeback for those who pitied her.

As time went by the role became more and more comfortable, almost hypnotically so. I began to feel like Dorothy and her cohort in The Wizard of Oz being lulled to sleep in a field of poppies only, in my case, it was a cushy power wheelchair. (“Tilt and recline…she’ll sleep now….sleep….sleep.”)

Then I made some changes in my medications and lifestyle, and my physical state gradually but significantly improved. It seemed that I might not necessarily become more disabled. I began harboring the thought that I might even escape from MS becoming, if not completely healthy, at least healthier than I’d thought possible.

I decided I’d better begin using my body as if it were going to recover. I put the wheelchair aside. I stopped grocery shopping from a Mart Cart and started walking with a regular shopping cart. Instead of scootering to the mailbox, I tried a walker. Once in a while I’d go out with just a cane. It took longer and was more tiring, but my muscles, ruined from sitting down, began growing stronger (when my nerves allowed me to use them).

My balance is terrible. This is partly because of my cerebellum, partly due to the loss of proprioceptors in my numb feet, and partly due to my knees locking and refusing to bend when I need them to. I’ve had a couple bad falls over the last few years resulting in a couple broken bones.

In an odd mingling of recognition and denial I’d become used to touching walls and furniture making sure never to stray far from some stationary support while “forgetting” my balance was poor. Then, when I felt myself beginning to fall I’d think, “Oh no! What’s happening?” There’d be a stomach-dropping, panic sensation, and I’d immediately reach for something with which to steady myself.

If I’m going to be well, though, I’ll need better balance. So now I try to stay mindful of my poor balance allowing me to anticipate the possibility of falling. When I feel myself losing it, instead of shocked surprise I have time to try to slow myself down, unlock my knees, and let my body find its center again. I’m having some success.

As I wrote earlier, I tend to play my chosen roles to the hilt. In the interest of pursuing my recovery I started taking a yoga class a few weeks ago. It’s a class for people with MS and the positions take that into consideration. The fact that I can do them, altered though they are, encourages me. It adds to my feeling of wellness.

I’d like to walk mostly with a cane. To do so I’ll need more strength in my legs than I can build at home. Today a buddy and I joined a gym. We plan to go 3 times each week. I’m sure I’ll only be able to move a little weight for a very brief time at first. But just telling Twink, “See you later! I’m off to the gym,” allows me to feel less disabled.

People, noting these changes, are a little confused. I haven’t been at it long enough to be as believable as I hope to become eventually. Then, too, they’re so used assigning me the “brave, disabled girl” persona that their initial tendency is to see this as more of the same.

Adding to the confusion, I am still really disabled to some extent. There are times when I can barely move my legs. There are times when I’m so tired I could weep. There are days when my symptoms are very intense and I wonder if “it” is getting worse. MS is changeable and I reserve the option of deciding when I am and when I am not disabled.

But overall I’m in better shape than I was a year ago and now think of myself as a slightly disabled healthy person walking along with a smile on her face in anticipation of progress still to come. Anyway, that’s my story and I’m sticking to it. They say “fake it until you make it.” I am practicing being well.