Soon after I was given a diagnosis of multiple sclerosis, I was told that only 25% of people with the disease end up in wheelchairs.
Whether the figure is right or wrong is not what concerned me. The use of words ‘only’ and ‘end up’ had such negative connotations for me, and still do to this day. People in general tend to regard those of us in wheelchairs as in need of pity and sympathy. Meanwhile, many with progressive illnesses seem to look at the prospect of using a wheelchair with fear and feelings of dread.
I have found that such feelings are unnecessary. A wheelchair is a tool for our benefit, not some curse to be abhorred. The equation is simple: whatever mobility aid we need, we should not be afraid to use it – from walking cane to wheelchair.
Bearing this in mind, I was delighted to read an article written by wheelchair-user Jennifer Digmann, published by multiplesclerosis.net.
Headlined I’m Not Broken Because I Use a Wheelchair, Jennifer says that, as a person with MS who has to use a wheelchair, she is instantly regarded as someone who is damaged and must be fixed. Someone to feel sorry for, or who could improve her health if she only tried a little harder.
This is because they assume she can’t be happy, fulfilled and productive if she has to live her life in a wheelchair.
I miss it but am not broken
It’s as though being able to walk is a prerequisite for having a good life. Yes, I would love to walk. Yes, I miss the days when I could stroll through the parks. Climb a flight of stairs. Stand all by myself to get into bed or go to the bathroom.
But my aggressive disease quickly progressed, and I haven’t been able to walk in nearly 16 years. This is who I am as a person. I’m not broken.
And for as much as those of us in the MS community are eager for others to understand what we’re going through, (my husband) Dan and I are hoping for the same from people living with our disease.
We often hear people with MS say to us things like “I’m afraid I’m going to end up in a wheelchair” – and I’m sitting right there.
Maybe they’re doing what I want them to do: See me and not my wheelchair. Or, maybe their fears supersede their sensitivity to present company.
Either way, I get it. I felt the same way when I was diagnosed more than 20 years ago.
But now that this is my reality, I feel I need to verbally stand up for myself and others who need to use a wheelchair.
Make the most of life
I, like so many others, am making the most of my life as it is.
And don’t get me wrong. I’m not complacent, and I haven’t given up hope that someday researchers will find a cure for this disease.
Would things be easier if I didn’t have to use a wheelchair? Sure, but I’m not putting my life on hold because I need to use one.
You see what I did there? I USE a wheelchair, I’m not CONFINED to it.
My wheelchair is the key to my independence. It helps me experience life. I can do things like go to the grocery store. Gather with friends for dinner at an accessible restaurant. Meet a cute man and get married. Travel throughout the United States. Attend classes as a non-traditional graduate student and earn my master’s degree (BTW: I was non-traditional because of my age and not my disability).
I hope that I’m helping to show that life doesn’t necessarily end if your disease progresses and you need to use one. In some ways, both literally and figuratively, my life didn’t really start rolling until after I started using a wheelchair.
To me, Jennifer is a great advocate for those of us who are wheelchair-users. She, like me, is not broken but is ‘wheelchair enabled’. We have both grasped the independence granted by our wheels.
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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.
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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor, so cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.