Growing Thicker Skin
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It’s inevitable that people will treat you different when you’re in a wheelchair, whether that works in your favor or against it. It’s nice when people open doors for you or offer to help you with something. But then there are the stares.
Being in a wheelchair while also having an invisible illness means that when people stare, I know they’re asking themselves, “Why is she in a wheelchair? She looks fine.”
It was hard growing up and having all my teachers doting on me before turning around and disciplining the kid who was talking too much. And I could feel the eyes boring holes in the back of my head as I read a book while everyone else took a vocabulary test or a final exam because my education was modified due to my form of muscular dystrophy.
The real test of my patience, though, was my family’s occasional trip to Disneyland. To grow thick skin, there’s nothing like a sea of people cutting in front of you, whispering, staring, pointing. It also made me realize that when people stare, they don’t always mean to be rude. Sometimes they don’t even know they’re doing it. My friends would always tell me to stare back or give them the “stink eye,” but I couldn’t. I didn’t want to make them feel the way they had made me feel, or worse. Instead, I smile. Smiling makes people realize their mistake while also sending the message that I’m friendly and approachable.
On Valentine’s Day, my boyfriend gave me a kiss while we were coming out of the movie theater. I was aware of a woman and her husband walking by. I heard her say, “Aww, look at her and her valentine!” It definitely ruined the mood, but as my boyfriend drove me home, we both realized that even though it ruined the moment we had hoped for, it also made a memory. My boyfriend, never before in a relationship with someone with a disability, took notice of the fact that people treat me differently than if I was able-bodied. To me, it’s just the norm these days.
The last couple years, my mom has been developing more symptoms of mitochondrial myopathy and has had to rely on a scooter for long distances. I’ve had to teach her a lot about maneuvering tight corners, steep driveways, and such. She now knows what it’s like to feel those eyes on our backs everywhere we go, but she and I both agree that it’s a small price to pay for mobility, and we won’t let that stop us from enjoying our lives.
Just because someone stares doesn’t mean there’s something wrong with you or that they’re trying to get on your nerves. Everyone stares sometimes, but if you’re kind and smile, you just might get a smile back. And if you don’t, at least you know that you tried. Besides, the world needs more smiles.
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Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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Comments
Daniel Clements
I am trying to develop a thicker skin. It is hard. I went to a Church with a famous speaker, and I rolled forward on my walker (I have OPMD, I got it hard and off the scale the alleles). Grown men punched and hit me because I was in their way, I even heard a man say, 'Just kick him, son, if he is in your way.' My pleas to stop beating me were ignored
I am retired Law Enforcement, because of my disease. I had a man on vacation try to extort and rob me because I looked weak. I still have a retired badge number. The thug thought I was a mark until he saw my hand on my pistol, before he could retrieve his. He ran away into the crowd. It is one of the closest I have had to coming to shoot a man since retirement.
I think the worst hurt, this side of a beating, an attempted robbery, is my parents cut off all communication with me. I was raised not to be liar, reinforced by about 20 years of law enforcement experience, and to be a hard worker. I was raised in a Mericocricy. I was only loved based on actions, not on who I was. My sister, who did not catch this disease has spun a web of lies to endear herself to my parents.
I have always told them the truth. They ask me how I am doing. I explained that I was having a hard time slowing down, as my doctor told me the more I exert myself, the more muscle I loose, that cannot come back, and that is excreted in the kidney's and if I did not slow down, I would have renal failure. Soon, after my father told me to be a man, ripped me a new one, and never spoke to me again. Apparently, I can't be their work horse as I am disabled, and more so as I get older. Therefore, I failed the Meritocricy and am no longer loved. I was raised in a nuclear military family. My father loved me while I was a tough Law Enforcement Officer. Once that ended, things got more distant, to being told to be a man. I didn't realize my genitalia fell off. Before and after my disability, my wife lived in denial then a lack of empathy. She has grown to empathize and understand. At least I have that.
Leah Leilani
I am so sorry to hear about your struggles Daniel. You don’t deserve that kind of torment. Nobody does. I hope that those experiences have strengthened your spirit and that you are able to find people that appreciate you for you
Daniel Clements
On a side note, my German Shepherd loves me just for me. You can't get better than that.