Learning to Live Life in a Wheelchair With MS


Multiple Sclerosis Wheelchair: Just Roll With It

multiple sclerosis wheelchairThere have been times where MS weakness, dare I say, ‘floppiness,’ has dropped me square into my wheelchair. I have to chuckle about this because I don’t have just any wheelchair.

Mine is a slightly garish contraption decorated with its own Technicolor dream coat. It is bright lavender and blue and green. It has cheesy rhinestones lining the frame and a flashlight hanging on the armrest.

There is no hiding when in this chair. It is an attention-getter worthy of Better Midler’s Off-Broadway mermaid routine. Of course, there is a story as to how it came to be.

‘When I First Had a Relapse That Rendered Me too Weak to Walk’

My husband Randy and I moved to the historic and artsy community of Lake Worth, Florida a few years back, around the time I was diagnosed with MS.

We live ten house lengths from downtown, which might best be described as the main street USA with a beachy, artistic flair. Lake Worth is also known for its tight-knit, yesteryear kind of feel where the shop owners know everyone, and one cannot go ten feet without a friendly hello or start a conversation.

When I first had a relapse that rendered me too weak to walk the single block that it takes to get downtown. After this happened, I resisted leaving our cottage at all.

I could not stomach the thought of having to be wheeled to my own stomping ground in a stupid chair. Feelings of resentment and spite churned inside of me. I felt as though I’d sooner become a hermit than be pushed around like a houseplant in a shopping cart, on display for all to see.

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As fate would have it, Randy grew up knowing how hard it can be for a headstrong woman to give in to certain allowances when hit with a debilitating disease. His mother, God rest her beautiful soul, had MS for decades. Randy recognized this wheelchair avoidance of mine was a hurdle we needed to jump, and we needed to do it sooner, rather than later.

‘My Husband Wheeled My Ugly Back and Chrome Chair Onto the Porch’

One evening, my not-so-subtle husband wheeled my ugly black and chrome chair onto the porch and insisted I get ready because “we are going out.’

I did not appreciate his tone, but I heeded his remark and begrudgingly plopped my spiteful self into my ugly, utilitarian, contraption of shame. I suppose one could say on that night, Randy literally pushed me out the door.

We both stayed silent as we slowly progressed up the street getting oriented with the new roles we both had to play. All the while, the bumps and uneven textures of the sidewalk vibrated my numbed muscles and rattled my bones.

I was stunned and put off by these new sensations. I had been up and down this stretch of sidewalk countless times. I never realized how much more one could get to know a stretch of concrete until I was subject to being rolled upon its surface.

I felt like screaming. I was not prepared for these unsettling sensations. None of this was mentioned in any section of the “What Is It Like to Have MS?” handbook. This whole situation felt wrong. It unnerved me and put me in a rather dark place.

I felt a second surge of information overload when we encroached the populated flurry of our little downtown. Everything seemed foreign from the vantage point of my seated position. I curled into myself, shying away from all the people and sounds and smells wafting from restaurants and bars.

‘Inside I Knew I was Over-Reacting’

I had always felt full of life when I went downtown, strutting my stuff in my latest pair of colossal heels, and waving to everyone we knew. Where now, was the tall, confident chic I used to see looking back at me in storefront window reflections? I was not handling this experience as well as I thought I would.

Inside I knew I was over-reacting. This was a relapse, after all, not a life sentence, not yet anyway.

I reminded myself I’d soon be walking around again, albeit with a cane. I’d use it gladly. It was a small give for independence, in comparison to being anchored down to an ugly wheeled prison.

I thought of others who did not have the luxury of rebounding from a relapse. Still, the whole chair scenario felt ugly to me. I had an icky feeling inside that I knew came from a time, long ago.

Next page: What Debra’s fears are and how her husband changed her views on wheelchairs. 

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