Thursday, May 6, 2010


Boxes ... kind of goes with stereotypes. Boxes here, there, and everywhere. I think I need my own box, but probably so does everyone else.

I have MS. When I first got my wheelchair, a neurologist thought I should get a scooter. After talking to my friend, Tom, in Minnesota, I decided to go for the wheelchair. My rehab doctor was supportive. And from that, I've built arm muscles and balance that one couldn't get by pushing a button on a scooter or powerchair. I handcycle and ski. Yet, I continually run into people who wonder why I don't have something with a button. Why would I want a button? I'd lose arm, stomach, and other strength. The "button" is needed for some, but it's an option for me, right now. But somehow, the letters "M - S" lead right to the button - "button box." Include in this everyone thinking we need $5k buttons (those blue, electronic ones) to open all doors. No - just make sure the hinges are loosened enough. It's simple. When there are buttons to doors, I don't usually use them. Most people in wheelchairs don't - ask or watch. Recently, research has shown the importance of exercise for people with MS. So if I use buttons everywhere, exercise is thrown out the window - what's the point?

Another box is "nursing home box." In the hospital, one day after surgery, I was "loopy," weak, and tired. In came the physical therapists for the first of many evaluations to put me in a box. After about 5 minutes, they asked if I would consider going to a nursing home. I wasn't that "loopy" - the answer was no. I said either acute rehab or home health. They responded they would try for acute rehab, but would I consider a nursing home as a second choice. Nope. Either acute rehab or home. I got out of that box and went to acute rehab. But there seems an assumption I've heard - MS recovery = nursing home. Why? 3 days in acute rehab and I was home. Most of that time was spent being evaluated to find another box for me. I think I left before a box was found, or a "Beth box" was invented.

In healthcare, some important concepts are integrated delivery and patient-centered care. Integrated delivery means the whole person is being treated - not just a disease they may have. Patient-centered care means the patient drives their own care, typically with a primary care physician helping coordinate things. Yet, with these 2 concepts, we still make boxes. We assume someone with MS has x, y, and z wrong when it may be only x. Evaluations are done and shock! The person only has x. I'm told only x is not typical of MS. Put another way, y and z are commonly in the box with x. There's complete confusion if they're not. It's this way in society too. Society sees me and thinks x, y, and z. I use a wheelchair. But mostly, I'm happy with life. It's challenging often, but it's a good life. And I'm active.

Research continues to show the benefits of continued therapy and exercise for people with MS. But it does take us out of the old "MS" box. And really, I think God must see some kind of humor in this. It's a bit like, "you did what? But, but, but..." I think God, with a sense of humor, laughs.

We each perhaps have our own box, our own limitations. So can people learn to ask about the person first, before placing the person in some pre-conceived box? Or is this simply too confusing?


hikerrev said...

Michelle Shocked has been quoted as saying, "Once you're categorized, you can be dismissed." The trouble is that we all categorize, and are categorized. It helps us make sense of the world, at least until our categories don't work any more. But we seem, when the categories (boxes) don't fit any more, to be more invested in categories than in people. It's more obvious in your case, but I think it's true for everyone.

ms'er faith said...

You're right - hadn't thought of it quite like that - thanks!