I often get questions from strangers about my multiple sclerosis and even my wheelchair life. I do not mind answering the inquiries people have because the only way to learn is to pose queries and get the FACTS. I fear the alternative, which is that people will assume and fervently spread these untruths everywhere. These are the most common questions people do not hesitate to ask me while in public. I felt this blog entry would be a good time for a question and answer session to help my readers understand me. Please be aware that these responses are mine alone, and no one should compare me to any other MSer or wheelchair user they know. As I said in a previous post, all people with disabilities are exactly different, so we are consistently inconsistent. After twenty years of battling MS I feel I am killing it.
Why are you in a wheelchair? I am in a wheelchair because I love the handicapped parking. The real answer: I was diagnosed with multiple sclerosis in 2001, which has negatively impacted my legs since 2012.
Will you get better and go back to the way things used to be? Currently, there is no known cure for multiple sclerosis, nor is MS a death sentence. The only thing I will do is continue eating relatively well, exercising, and living my life to the fullest.
How did you feel the first time you went into public with your wheelchair? I was full of shame, embarrassment and I felt that everyone was looking, staring, and judging me as if my picture was on a wanted poster. However, that is no longer the case.
What are the frustrations along your day? There are devastatingly disheartening developments to my MS and wheelchair day quite often. The most significant issue is how every part of my day is simply significantly slower, making the idea of rushing or spontaneity as likely as seeing a live purple unicorn. I usually feel like a turtle on his back, often struggling to make simple moves.
Are people compassionate or insensitive towards you and your wheelchair? I would say you have those who are kind or sympathetic and always willing to help. However, occasionally some individuals hate themselves and want to tear down others to make them feel as bad as they do. I let negative comments roll off like water off a ducks back and use my reply to say something positive or simply smile.
How do you feel about people touching your wheelchair? That depends on the situation and the person, like are they, friend or stranger. I have seen strangers act impatiently push my wheeled cohorts chair away because they could not wait twenty seconds till my friend rolled away. I will not hesitate to speak up and even run over their toes.
What are some things you used to take for granted that is more difficult now? I would say moving through life, I did not have to think before my seated situation started. Now I have to think and plan where I am going asking questions like is it accessible? There are so many questions I must answer pre-event now.
Do strangers ever stare at you or ask you strange questions? Some people do stare, but I smile a lot and say hello, which sometimes sparks conversation. In the beginning, I would occasionally get odd questions, but I do not mind. I prefer they ask rather than assume as it is better to spread facts, not falsehoods.
Do you get mad when you see people who are ambulatory be lazy? Sometimes, I have a few pet peeves, like how some individuals shuffle and do not pick up their feet when they walk is a big one. It drives me bonkers, but I keep it to myself and say nothing when I see or hear it.
How do you feel when someone says you’re an inspiration? Here is the thing it is all about timing. Let me explain: if you meet me on the street and in a few seconds you say I am an inspiration, in my opinion, you are just pandering. Give me a chance to earn that word and not merely because I got out of bed this morning. Genetics does not make me an inspiration. To be honest, it makes me feel like you are actually saying, I am so happy I am not in your shoes like I am less than.
As a person with multiple sclerosis and in a wheelchair, I hope this shows I want to be just another person. I do not wish to be treated with kid gloves or talked down to like a kindergartener trapped in an adult body. You may use your legs to ambulate, but I use my arms to propel through life and merely want equality like everyone.
I use a wheelchair. It is not who I am. It is just how I get around.