Skip to main content

Struggling to not feel like a failure


Okay all of you 'struggling to stand' or 'not wanting to have to use a wheelchair' or others that look upon using a wheelchair as a symbol of failure, you're about to get punched.

Punched in the figurative sense.

I am about to go on my soap box and my Irish is up which means that I'm fairly peeved (though I've been mulling this over for awhile so I'm not as angry as I once was, which means there will be fewer expletives and a kinder tone).

If you've read this blog or know me at all, you know that I did not go easily into using a wheelchair as my primary mode of transport. I too, may have had a little bit of your attitude about the wheelchair being sign of failure or of having given up. My sister, Kerri, helped put it in a different light. She said, and I'm paraphrasing here, "It's actually an energy saver since walking is stressful and you're worried about falling - using a wheelchair will take away a lot of that stress. You will have more energy to do things since you won't have to expend so much energy getting to the thing you want to do."

Genius.

I did spend a lot of energy just NOT falling. I would focus so singularly on NOT falling or tripping. Like getting into the grocery store to grab onto a shopping cart that seemed at times like a lifeline, then pushing the cart through the store  then to the checkout then back to my car where I'd often be so weak that I would be shaking and sweating loading those into the car. It was, for me, a pride thing that kept me from using a motorized cart in the store, but that could have saved a whole lot of energy and time.

When I read this column {link below}in the MS Society publication, Momentum, by Richard Cohen (journalist and spouse of fellow journalist Meredith Viera), the memories of those struggle-to-stay-upright times came flooding back. I felt sad for Mr. Cohen and his stated struggle to stay standing.

  "I have no intention of going gentle in any passive posture," he wrote. "I believe in the fight. Many do not understand. Attitude is a player. Some see how difficult moving around — merely walking — can be for me."

I resent 'passive posture' and the allusion that by using the wheelchair on has given up the 'fight'. 

He is not alone. Many individuals with disabilities have echoed similar statements saying things like "At least I'm not using a wheelchair" or "I haven't given up yet, I am still walking"

I am not passive and my posture is definitely NOT passive either.

I haven't stopped fighting while I'm wheeling around. In fact, since I'm wheeling around I feel I am able to participate more fully in life since I am not fighting to stay upright. I feel I am able to fight for visibility and access because I have more energy to BE visible and see where access needs to be improved.

I think of our recent trip to the Dominican Republic where there is not ADA. If I hadn't been there in my wheelchair, the owner of the cam where we stayed would perhaps not known that the flagstone pathways were difficult to navigate in a wheelchair. Or the staff at the resort would not have understood that a room on the second floor, in buildings without elevators, were not accessible for a woman in a wheelchair. Or having an accessible bathroom is great, but the toilet in the bathroom needs to have a seat.

I think of various situations I have encountered where accessibility came into question, and the people that have observed and often said "I never knew". I couldn't have opened those eyes had I not had the energy enabled by the wheelchair I'm using. 

If you'd asked me five years ago to sing praises about using a wheelchair, I would have looked at you like you were crazy. I would still prefer to be walking and certainly not to have MS, but because I cannot and because I do, I am grateful to have Hot Wheels. 

https://momentummagazineonline.com/struggling-to-stay-standing/ 



#msadvocate #izzyswheels

Labels

Labels:

Comments

Post a Comment

It's not a popularity contest, but ...

When being negative is positive and other wonky 'things' in the time of Covid

The world is upside down and back ass-ward. Know what I mean? I was chatting with a cousin the other day and her potential exposure to the corona virus. I wrote, "I'll say prayers for negative results for all. Don't like negativity but these days negative is a positive." Back ass-ward. Remember when we first went in to shut-down mode in mid-March? We were told that it was to flatten the curve of hospital admissions so that our ICU's didn't run out of capacity and to ease the virus' spread. It felt then like we were in this together, all of us were going to help beat this virus and stay home. (Aside from the run on toilet paper!) We were committed, or so it seemed, and our closets were going to be cleaned, our junk drawers were going to be a thing of the past, our garages/basements/and other yucky places were going to gleam. We were going to read "War and Peace" or "Hamilton" or other weighty tomes that we'd always wanted to read. We...
Post a Comment
Read more

Is that a wagon in the distance?

I fell off the wagon. Well, that might sound a little accidental. When in reality it was more like, "I'm getting bored with this wagon ride, so I think I'll just get off here." And then I kicked the crap out of that wagon until it was but a distant dot down the road. In this case the wagon was my commitment to that silly Wii Fit. I got tired of hearing that stupid trainer say things like "you seem a little wobbly today" (to which I would say something classy like "No shit Sherlock!") or for the scale to move ever so slightly - and ever-so-slightly wasn't  enough to keep me motivated. I needed more!!! So, I jumped off the wagon. Makes a lot of sense, right? WRONG!  But justification is a powerful thing and something I've nearly perfected these many years losing, then gaining, then losing, then gaining . . . the same 40 pounds. Heck, you could say that by now I have a PhD in Justification.  And here's the thing, that wagon is st...
Post a Comment
Read more
My aunt recently commented about my blog that I do a  "great job of sharing things very personal without them being morbid, too dramatic, TOO personal". I am about to let her down . . . It's been a tough week.  We learned that a man we knew from treatment at UofM, with a similar cancer, passed away on Tuesday. We knew that just after the treatment at UofM concluded, that his cancer had meta-sized to his lungs and other treatments (including one at John's Hopkins) did not help. John Cleasby was only 57. In my mind, I can see his face in the chemo infusion room at UofM - coping as all the patients were. He was a quiet and gentle man - who happened to be married to a former co-worker of mine. While sitting next to each other in the infusion area, it seemed a blessing that I found a long-lost friend in the chaos that was the UofM Cancer Center and hospital. Bonnie Cleasby and I shared so much and had such similar outlooks. "We are going to beat this thing", ...
1 comment
Read more