How Humor Helps Me as a Newly Disabled Person
I am disabled. Over the course of the past year to year and a half, my health has rapidly declined and I have gone from an occasional (what I believed to be only) fibromyalgia flare to discovering I have had a silent stroke. I have general hypermobility joint syndrome which is a genetic disorder and one step down from Ehlers-Danlos syndrome hypermobility type, POTS, and most likely Sojourn’s and Hashimoto’s. Oh, I almost forgot bipolar disorder and anxiety.
In the beginning of this melee of physical dysfunction, I was extremely angry and I wasn’t a lot of fun to be around. Then I sat and had a talk with my brilliant daughter, who also has a conglomeration of diagnoses on the way. She taught me it is fruitless and hurts no one but myself. This advice seems obvious and simplistic, but when you are in the midst of the anger having someone else say it to you genuinely seems epiphanous. I opted to let it go for the most part, along with the friends I had lost along my journey of defining my chronic illnesses, and develop a sense of humor about them.
Chronic, meaning “continuing or occurring again and again for a long time” obviously meaning it wasn’t going away, I took my wheelchair and “cripple punked” it. I took zebra duct tape and wrapped all the metal I could find. I ordered a red umbrella holder for when I am at parks or out in the sun, and a insulated cup holder. I added a zippered pocket for the inside of the arm and I was all set to venture out and learn how to use my chair on my own without anyone pushing me. This was going to give me more freedom. I wouldn’t hurt like I do walking and wouldn’t get dizzy and fear falling.
The first day I took the chair to the gallery where I volunteer, I was met on the sidewalk by a friend who is also a “zebra;” she has EDS. She stood outside with her wheelie walker and I was in my chair trying to learn how to make it up ramps. I was leaning forward. You don’t lean forward. She was explaining how you lean back to let the front wheels pop up over the edge and continue to push. This one was a little steep and I am a big girl. I was struggling and she was standing there urging me onward.
A guy rounded the corner and you have to imagine what he sees… an overweight woman in a wheelchair struggling to get up a ramp and a little 5-foot young woman wearing a lot of braces with a wheelie walker cheering her on to get up the curb. He thought we needed help. He swooped in to be helpful and save the day. He was going to push me from halfway up the ramp onto the walkway. My friend then yelled at this guy “No! Don’t touch her! She has to do it on her own.” He threw his hands up and walked away. I laughed and told her, “It is getting really hard, you could’ve let him. It’s OK.” Her reply? “Yeah? Sucks to be you. Keep pushing.” I bust out laughing so hard she had to help after all.
It’s the little things now, like the t-shirt I found I want that says “I’m so tachy…” with the heartbeat line or the one with the wheelchair with flames that says “They see me rollin’ they hatin.’” Things that make me smile and I find funny make it easier to deal with the things that aren’t.
So laugh at our disability jokes. We are the ones allowed to make them, and if we make them around you, we are obviously comfortable enough with you to share that much and be that vulnerable.
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Thinkstock photo by Drante.