MS is such a rollercoaster for me that I can go from walking (almost) normally to having trouble walking in the same afternoon because my knee and ankle don’t want to bend. I have used a variety of AFOs off-and-on over the years to help, but I’ve been fortunate that my MS has never made my walking so bad that I needed a wheelchair.
That changed in late August of this year. As many of you know, I broke my MS-affected leg, and since then, I haven’t been allowed to put any weight on it. Most of the time I get around on crutches, but I knew I'd need some extra help getting around for a work trip to Las Vegas to teach at the Pilates Method Alliance Conference. I brought a wheelchair I had only used three times before and it was a eye-opening experience. I thought I’d share my thoughts here.
I'll start from the beginning of the journey, at my home, which is decidedly NOT handicap accessible. I can barely fit the wheelchair through my front door, and there are steps down in multiple places, which lead to a sidewalk of attractive, yet uneven, brick. One week after my leg reconstruction surgery, my husband took me on a wheel around the neighborhood. The wheelchair (admittedly, a cheap one) couldn’t get over many portions of sidewalk. If we went forward, the small wheels in front got stuck, so we had to go backwards. I tried to do some of the wheeling, but quickly realized that without gloves, my hands were getting blisters from the friction of using the wheelchair – not so much in going forward but in using my hands to slow down momentum or to steer. Your hands essentially act as both your motor and your brakes.
Next came the perils of airport travel. I was lucky enough to have friends traveling with me to the PMA Conference. They helped carry bags and pushed me through the airport because I certainly don’t have the upper body endurance to keep pushing that far… especially when you hit carpet.
Carpet feels like moving through sand. The wheelchair gets markedly “heavier” as the drag of the carpet fibers pulls it back. I recently heard someone complaining about their roller suitcase on carpet. Yep. That. But much worse. God forbid you’re going up a hill. You have to get some serious momentum going or else you will start to roll backwards. I don’t care how strong you are – gravity is real and it is no joke.
When boarding a train to take us from one terminal to the other, my front wheel got stuck in the gap between the train and the platform. It was momentarily terrifying, since the wheelchair was tipping (and the door would be closing soon). Fortunately, a strong guy came along to help lift the chair (with me in it) out of the abyss. It wasn’t a pitfall I even considered before the trip.
Another phenomenon I noticed: in a wheelchair, you become simultaneously conspicuous and invisible. Because you are lower to the ground than most everyone else at the airport, people often run into you or don’t move out of your way. They are looking at their own eye level (or likely, they’re on their phones). But people who do look at you try hard not to noticeably look at you. It’s natural to be curious – I know I always am. If I see someone with a walking aid or wheelchair, I always want to know what happened.
The hotel had a new set of challenges to tackle. Our “handicap accessible room” kind of wasn’t. At one point I went to the room by myself. I had the wheelchair with crutches strapped to the back. To reach the slot to insert the hotel key card, the wheelchair had to be closer to the door than it could be if you were heading straight at the door. I had to approach it at about a 45 degree angle and lean way forward to reach. Once the door opened, though, I was not at angle where I could actually maneuver the chair through the door (which was heavy). I tried propping the door open with my good leg (what if I were paralyzed and didn’t have a “good leg”?). But, in that position, I couldn’t get through the door. My right hand was smashing into the door frame, and if I went backwards to try to square the chair to the door, the door would shut. Granted, I didn't expect to become a wheelchair pro in a couple of days, but I couldn’t make it through the door at all. I had to park the chair, grab the crutches, and use that smaller footprint, increased height, and maneuverability to get through the door, prop it open from the inside, and drag the chair inside. I also encountered handicapped restrooms that were so small I could only wheel straight in, park, and use the crutches or rails to hop (on my good leg) towards the toilet.
Then it was on to the conference hall. I had been to Vegas several times previously, and it always struck me how spread out everything was. I live in Washington, D.C., a crowded city, dominated by rowhouses. My main studio is slightly less than one mile from my house, so I have become accustomed to traveling that distance, over several blocks, past dozens of restaurants, bars, shops, apartments, and homes. The exhibit hall was roughly the same distance from our hotel room… but in the same building. Although I have pretty decent upper body strength, I would probably still be slowly making my way from the room to the exhibit floor if Meghann or others weren’t available to give me a push. It was exhausting.
I doubt any of this will come as a surprise for those who have used a wheelchair regularly, and these types of frustrations aren't relegated to special events or cross-country travel. Even something as leisurely as a trip to the movies presented unexpected challenges around every corner. When my husband and I went to see A Simple Favor, I wheeled myself up a ramp located next to the handicapped parking spaces only to discover that there were four stairs at the end of the ramp. I had to go another way (back from the parking lot, to the right, down the street, and up another ramp). It was totally illogical. Why have a ramp that leads to stairs?
Once I got to the door to the theater, the handicap button to open the doors was broken. After just three months on crutches/in a wheelchair, I can confidently tell you that those buttons work roughly half of the time, if they are there at all. My physical therapist office doesn’t even have one. I literally have to call upstairs to have someone come down and open the door for me.
The fact is that the U.S. remains largely inaccessible for persons with disabilities despite the Americans with Disabilities Act. Since I was diagnosed with MS in 2002, I’ve been conscious of places that aren’t accessible at all. I never realized the places I thought probably were accessible that aren’t, or aren’t accessible enough. When you’re traveling this holiday season, notice all of the places that would be hard to maneuver if you can’t walk.
As of last week, I’m allowed to transition back to walking again. I’m glad to rejoin the world of the walking, although I am also reminded of the MS issues that made walking sometimes difficult. I'm limping not only from the pain of putting weight on my heavily-metal leg, but also from missing three months of left calf stretches and the MS spasticity I let myself largely ignore while I focused on rehabbing my broken leg.
I plan to get back to where I was pre-injury, even if it takes me months, but I will never forget the perspective I gained from my wheelchair days. I can’t see the future, but thankfully, I have strategies to treat my spasticity and regain leg strength. I'm doing my best to create something positive from this misfortunate situation, so stay tuned for the left-leg recovery videos that are coming your way.
In health,
Mariska
