Jun 07, 2012
Never do I want to be constrained to a wheelchair. Yes, I know, neither do you. None of us do, but living with Multiple Sclerosis, it is a possibility that isn’t hard to imagine. I took a trial run at it last week and came away with a renewed appreciation of being ambulatory. It was vacation week, and I had agreed to go to Orlando and the Mouse World with our son and his family. The thinking was being late in May, the weather would still be reasonable. So much for our thinking – there was some flaw in the plan, because Mother Nature cranked up the thermostat and we had temperatures in the 90’s every day.
Heat sensitivity is a fairly common problem for people with MS, and I am no exception; the warmer my core temperature becomes, the less cooperative are my legs. Keep me in that type of stifling heat Florida was experiencing and I quickly resemble Quasimodo and his walking gait - step, lean, drag, shuffle. Repeat. The hotter I am, the scarier the MonSter in me looks.
We planned on five days in the assorted parks and thought we had developed a reasonable game plan. However we didn’t take into account the unusual early season crowds and did I happen to mention the heat? The money was already spent for the tickets, the granddaughters were being cooperative and so excited to be in the Kingdom that I had no choice but to forge on. The answer to getting through the finals days was something I had already thought of but had hoped to avoid –I relented and rented. A mere $12 a day and anyone can rent a wheelchair for getting around the parks. There is even a multi-day discount so I put down my plastic and paid $20 for my own wheels for the final two days of our trip.
Except for an occasional push down a hallway at a hospital, I’ve not been confined to a wheelchair, and especially not in the midst of an excited, hot, sweaty crowd, all juggling for their own spot in line or place on the curb. My adult children and husband traded off turns pushing, but my daughter did the yeoman’s share of the work and she got the workout with the stop and go, up and down aerobic nature of wheelchair pushing. The height of the chair handles appear to be made for people who are less than 70 inches in stature. My family is tall, and each one of them had to stoop slightly to push the handles.
I’ve joked many times with my husband since my diagnosis with MS that I need to work out more so I can be prepared to haul my own a$s around in a wheelchair, and I learned that is no longer a joke; I could barely budge the wheels with my own arm strength. I’ve also talked about the need to lose weight, so it wouldn’t be such a chore for others to wheel me and this trip made the importance of that more evident than ever. But mainly, just like I am sure everyone with MS desires, it was a good reminder that I want to be in control, and there is no way I can do that when someone else is doing the pushing. It didn’t take me long to declare to my family that if there is ever a need for a full time chair, it will have to be an electric one that I can propel on my own. I will make them take responsibility for that choice and blame it on the fact that they are horrible pushers and each one of them clipped more than one person in the heels as we made our way through the crowds despite my warnings that they were too close or too fast or too, too, too whatever. This was from my family who regularly gripe about the seniors in the grocery story hitting into them with their food buggies.
People who regularly use a wheelchair talk about the view from that height and I can tell you it isn’t pretty. In a large, sun baked crowd, it is even worse. I could see eye-to-eye with my 7 year old granddaughter, but the body parts I saw on most everyone else was something you would hope to avoid. If the sun didn’t bake my eyes, some of the views certainly threatened to blind me. Goodness, do these people not know what they look like below the neck and especially the belt line?
It was a humbling experience to set aside my pride, take a seat, and be dependent on others to get me through the 10 hour days of amusement. While the others went off to tackle the thrill rides, I sat in my wheelchair, entertaining my 18-month old granddaughter in her stroller and couldn’t help but feel a tad bit sorry for us both that we were left behind, even though I have never been one for dips and spins and turns in an amusement park. But we made the best of it - we had our laughs, danced a bit to the music, and made our own fun. Like everything else with MS, perspective factors in a major way as to how to deal with the daily differences. Being in a chair, albeit voluntarily and for a few short days, gave me new perspective and renewed motivation to not relent to my MS.