MS Nation

By Dean Kramer
December, 2007

It’s not difficult to sit in my cozy cottage at Cripple Creek and write about my experiences as a gimp among the temporarily able-bodied.  There are so many significant differences to explore and, conversely, so many similarities needing to be revealed that in the seven years I’ve been writing this column I have never been at a loss for material.

But I have seldom written of my life as a person with MS among others with MS. The MS support group that meets near me does so on a night when I’m unavailable. I have been to physical therapy at a rehab center where there were many mobility equipment users. But none of them had MS. Every-so-often I’ll come across someone with MS while I’m out and about and that’s almost always an inspiring experience. But for a sheer reality check nothing beats a National MS conference.

Last Monday and Tuesday I went to my first-ever regional National MS Society Leadership Conference and Expo. The conference billed itself as the largest in the world with 2,000 registered attendees for Tuesday’s Expo and a waiting list of people wanting to be there. The Expo was free to people with MS. I was invited to stay from Monday afternoon into Tuesday as the guest of one of the Leaders.

I took a wide selection of mobility equipment with me. I took my walker because I use it to get to and from the car. I took a pair of canes to get around in my hotel room. I took my small travel scooter for the Expo on Tuesday. With it I hoped to do some advertising for MSWorld. I’d brought a display banner, brochures, and pens and buttons with the MSWorld logo. I also took my manual wheelchair because, in my experience, a battery-operated scooter is more likely not to malfunction if it knows you have a back-up option.

Monday night was the Leadership Dinner. My scooter, decked out in MSWorld regalia, was on its best behavior. I felt competent backing into my place at table and swiveling my chair, as many of those around me were doing.  I swiveled again to listen to the after-dinner speeches. The scooter handled well all evening and I charged it overnight.

Tuesday morning I rode it down to the lobby, my banner proudly displayed, my basket loaded with give-away goodies. I was ready to tell the world about MSWorld. But, sadly, it was not to be. Despite my having a back-up option, the scooter breathed its last in the lobby and became immobility equipment. I had to walk it to the car. I felt incompetent and (unreasonably) ashamed as if I, not my scooter, had broken down.

Fortunately I did have my ultra light manual chair. I always feel good in that chair because I can wheel so easily, getting exercise while getting around. I left my give-away goodies at the NMSS booth with a Staffer who also volunteers with MSWorld and rolled my way into the Expo with my friend, the Leader.

Most of us who have MS have been told how “good” and “healthy” we look. If you peruse pharmaceutical company literature you’d think that everyone with MS is either an athlete or a potential catalog model with no visible sign of a demyelinating disease.

At the conference every stage of disability was well represented and it became clear to me, visibly so, that MS therapies to the contrary, most of us become disabled to some extent the longer we live with this disease.

That may sound like bad news, but the good news is that we were all at that conference, cheerfully meeting, greeting, and understanding one another. We were walking with difficulty, or with a cane, or with cuffed-crutches, or with walkers. We were wheeling ourselves in manual wheelchairs. We were being pushed in transport chairs by caregivers. We were riding scooters or power wheelchairs. We were sparkling, engaged, and full of life.

No matter how we got around, we were there having a good time collecting cool free stuff from a variety of vendors, gathering information from an excellent series of workshops, being inspired and entertained by keynote speaker, Richard Cohen, author of Blindsided, and generally hob-nobbing and networking. In fact, maneuvering around the expo floor was a bit like Dodge ‘Em Cars at the local amusement park—so many scooters, so little space.

I’ve written before about the difference between a static disability (such as a missing limb) and a progressive disease (such as MS). Writing about it is not the same as seeing it. I was pretty overwhelmed, more comfortable as a disabled person than I usually am in a large crowd and more uncomfortable than usual because, for the first time in my life with MS I got a sense of how many of us are dealing with this disease. This was a regional conference held on a weekday and there were over 2,000 people there most of whom had MS.

I felt immediate rapport with the individuals I spoke with. Whether at dinner the night before the Expo, waiting for a workshop to begin on Tuesday, or on line for the rest rooms, people were easily engaged in conversation, eager to share information about their equipment, their therapies, and their lives. I found a level of understanding you’d be hard put to experience in any other context. I enjoyed talking with people without having to explain anything about MS such as why I use a wheelchair, why they used two canes, why their speech slurred, etc., etc.  We could look past all the yada-yada and cut right to the heart of things.

And, after loading and driving myself to the conference, unloading my equipment, the excitement of the Leadership Dinner the night before, and wheeling myself around the Expo floor for a few hours, I didn’t even have to explain to my friend why I was tired and needed to leave earlier than I’d anticipated. She understood completely.

If you have never been to a NMSS conference, or an MS Walk or Bicycle Ride, give yourself that gift at least once.  For me it was as if I’d been living in a foreign country, an odd duck speaking a foreign language all my life since MS. Suddenly I found myself repatriated to a land where my people were the most numerous and everyone spoke my tongue.