MS is…Shame by Lisa Kemppainen

It’s true. One of the first things that came out of my mouth when I learned of my MS diagnosis was “If I am ever in a wheelchair, I will kill myself.” At that time the thought of that sent me into utter panic and desperation so intense I would rather kill myself. True story.

I hate my wheelchair. I would love to throw it off a cliff. A wheelchair comes with so much complicated emotional crap to navigate that the physical piece of it, which is challenging at best, becomes the easier part of using it. That, my friends, is a big statement.

Between the Queen of England. who is almost 100 yrs old. refusing to use a wheelchair because of the stigma and the emotionally powerful moment with Gaga and Minelli at the OSCARS, it just seemed time to share a bit about life when a wheelchair becomes your best friend and worst enemy. 

I wonder when, how. and why mobility devices become such an awful thing? They are intended to keep those of us who need them mobile, safe, and participatory in our lives.

That being said, I witness, on a daily basis many with MS who refuse to use a mobility aid. They would rather stay home and/or put themselves at risk of falling than use a walker, cane or wheelchair. We say no to vacations, parties, and restaurants. 

And for people with multiple sclerosis, it’s not just about a wheelchair. It’s about the bathroom. It’s about getting in and out of the wheelchair. It’s about the heat. It’s about the fatigue. We all know if it were just about a wheelchair, we sure the hell wouldn’t like it but it would seem easy compared to the whole package we are dealing with.

I remember 10 or so years ago when a good friend was visiting and wanted to go to Manitou. I said, “I can’t do that. How will I walk around?” She said, “just get a wheelchair.” At that point, I had one stuck in the back of the garage. I suppose it was a donation and I just kept it for “maybe someday.” I remember being horrified by her suggestion, which to her seemed like such an obvious solution. For her able-bodied self, it was like, “come on, what are you waiting for?” I wanted to shout at her and say, “YOU DON’T GET IT? ONCE I SIT IN THAT THING I WILL NEVER GET OUT.”

Well, we went and I used it. I remember being pushed through Manitou and wiping tears that streamed down my face – glad I was being pushed from behind so no one would see my grief. And, although maybe a few times for short distances I did get out, but not really. From that day until now, my wheelchair has been my appendage.

My friends have pushed me in it. My son. My 88 yr-old mother. The TSA agent, who saw me in it and decided that I was so pitiful he would, without my permission, pray over me. 

I don’t know what seeing someone in a wheelchair evokes for you emotionally, but I know it is something. I see it. I can feel it. I experience it. You want to see me and say the right thing. But you don’t know what to say. So you pretend it isn’t there. I am not there. It’s all so damn uncomfortable. 

Everyone who uses a wheelchair for chronic illness, not para-olympian or skiing accident reasons, will tell you the experience of being unseen is true. We all talk about it.

I get it. It is so hard and so confusing for all of us. Sometimes I want help and sometimes I don’t. Sometimes you want to help and sometimes you want to ignore it. We are all blundering through it because disability is messy and well, let’s face it, bloody sad.

For me, and perhaps others like me, it reminds me that my once 6 ft tall, head turning self is now reduced to the size of a 5 yr-old who is now rolling through the world as adult sized people walk by.

Broken. A burden. A drag on society. Needy. Helpless.

And oh, let’s not forget unattractive. No sex appeal in that.

The shame that comes with a mobility aid is directly connected to the things we, as a society, hold in such high esteem. 

Independence,  freedom, vitality, health, strength. The ability to produce. Do. Go. Make things happen. Contribute. And look attractive. Perfect is preferred. 

In a wheelchair all of those highly valued traits disappear. There is not even a chance to pretend. All those “things” that a person “should not be” are stuck right in that piece of mobility equipment.

I told my friend Kristy, “sometimes I want a big sign over my head saying “I am sorry. Please know, I wasn’t always like this.” If that doesn’t scream shame then I don’t know what does.

I’ve been parked in line with my face directly in front of some unknown person’s ass. 

I’ve been asked by a stranger if “I was faking it?”

I am left out of conversations at parties and events where able-bodied people circle up to socialize. For them to talk to me, it would mean leaning over or me looking up. Not only is it awkward, it is hard on backs and necks.

Decisions about “what to do with me” are occasionally discussed literally over my head, forgetting I am even there. 

God forbid my seating assignment is at a table in the middle of a room, far from the bathroom and where everybody who is already seated has to get up and move chairs so I can be pushed through to my seat.

Excuse me. Pardon me. Coming through. So sorry to disturb you. 

I heard a person or two, in an airport, say something like “I wish I was in a wheelchair so I could cut in line.” 

Sure you do. Try it for an hour.

In my fantasy world, I say ’ll give you my disabled placard too”. 

And then, I get out of the chair, I walk off and go get in the back of the line like everybody else.