The One Place I Felt I Could Be Myself as a Person With Physical Disabilities

I recently traveled to the Mayo Clinic to see the world’s expert on stiff-person syndrome (SPS). During the days I spent there undergoing countless tests, I’ve never felt more comfortable in my own skin.

You see, because of then-suspected stiff-person syndrome and severe contractures in my feet, toes and ankles, I haven’t been able to truly walk for the last seven months. As a result, I use a wheelchair to get around.

Everywhere I go, I’m constantly stared at. I know it’s because I’m in a wheelchair and people are naturally curious. They think they’re being discreet when staring, but they really aren’t. I can’t say I blame them for staring. People who are different from ourselves are curious to us. We wonder about their background and their life’s story. Yet, we are always too afraid too ask.

However, there is one place in the world where I have felt like I “fit in.” It’s not a place you would expect, either. While I was in the cafeteria at the Mayo Clinic, it was the first time I realized I wasn’t being stared at because so many other people were in wheelchairs as well. Instead of staring, people go up to each other, introduce themselves and share each other’s stories. Some share stories about their health journeys and others share about their favorite baseball teams. It is heartwarming to see and to take part in.

An older woman asked me about me cochlear implants while eating lunch in the cafeteria. This led to a wonderful conversation about hearing loss. Because I had experience with partial hearing loss before I lost my hearing, I understood her frustrations when she would ask for a repetition of something she had missed and the person insisted “never mind.” Knowing how she felt, I repeated it for her.

As it turns out, she was at the Mayo Clinic for vertigo therapy because of Meniere’s disease. The Meniere’s disease caused her to lose her hearing. At one point, she was believed to be a candidate for a cochlear implant like I have. However, due to the disruption of the middle ear, it was determined the surgery would be too risky. This led to a wonderful question and answer session on cochlear implants and hearing loss in general.

Another elderly man was there for complications from diabetes. He had roots back to Pittsburgh, and we had a wonderful conversation about over favorite Stanley Cup-champion Pittsburgh Penguins.  

While I was waiting for some autonomic testing, I was coloring in a brand new Zen coloring book and talking about how stress relieving it was with another woman.

We were from all over the country — heck, all over the world. I’m not saying to be nosy and interrogate every differently abled person you see, but if you make eye contact with someone, don’t be afraid to strike up a conversation. You never know what you may learn or even teach someone. Not everyone is willing to have a conversation about their differences, but I’ve always been very open about my physical disabilities and my invisible illnesses. I can’t expect the world to know about them if I don’t take the initiative to educate others.

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