About one year go I was diagnosed with multiple sclerosis (MS), an autoimmune disease that affects the brain and central nervous system with each patient challenged in different ways. MS affects my mobility so at the age of 54 I am on a walker. When the diagnosis came it seemed everyone else was more devastated than I was.
Because of a “perfect storm” of medical issues, I was having some problems before the diagnosis came in: I’ve been on a walker or a cane for several years. This was just one more blip in a well-traveled road of medical challenges.
Now I know what I was dealing with: I’ll research it, understand it, weigh my options, face it and continue on with my life.And that’s what I did, juggling medical treatments, days of fatigue and exhaustion too difficult to explain, and even laughing at the moments where I was not the brightest person in the room! I tried to park distances, walk as far as I could, exercise daily, watch my diet – all the things we all do on a daily basis.
But that Saturday night on the way to a country western concert at our local fair things changed and I literally felt blindsided. My husband went to get me a “helper cart” to carry me up a steep ramp to my seat in the grandstands. As I saw the cart approach all I could see was the word “Handicapped.” I don’t have a handicapped sticker; I do not consider myself handicapped. Handicapped are “those other people” who face so many more challenges than I do on a daily basis. Handicapped are “those other people” who can’t do anything without help.
I have MS but I am not one of “them.”
Yet honestly that evening it was a struggle to get my legs into the cart. It was a struggle to get my body into the cart. More than anything, it was a struggle to remain optimistic and smile when inside my mind was screaming, “I am not handicapped! Quit looking at me!” But apparently, riding in a vehicle clearly labeled “handicapped” – which was the only way to my seat clear up in the grandstands – indicated I was.
Merriam Webster dictionary says: Handicapped sometimes offensive: having a physical or mental disability.
You think? The older I get the more I find any label offensive but there is something about this one – probably because it is so personal – that is even more offensive to me. I don’t look at anyone using a cane, a walker, a wheelchair, a leg brace or a myriad of other mobility devices as any lesser of a human being. We all have our challenges and I thank God everyday, especially when I go for medical treatments, I am not walking into our cancer center. I have an incredible support system of loving family and friends and I could not ask for any finer of a medical team than those individuals who care for my health, heart and soul.
I have even told my husband – who does most of the shopping, cooking and cleaning – “I would have never married you if I would have not ‘in sickness and in health’ would have meant this.” To which he replied softly, “You don’t understand at all. I just love YOU.”
My blessings are unlimited but that night, under the beautiful clear northeastern Colorado sky, while thousands of country fans singing with Dierks Bentley, all I saw on stage in fluorescent colors were the words “HANDICAPPED.” “GIMP.” “BURDEN.” “WORTHLESS.” “DRAIN.”
At the same time my head was reminding me, “I’m slow but functional. I’m compassionate and giving but I’m just not as mobile as I used to be.”
That worked for a while.
A few months later I hit a bit of a relapse and after a few weeks on steroids, I had gained so much weight my “handicapped” legs couldn’t hold me up. So I fell twice, and had to wait for people to come and help me up off the floor. (For the record, the “I’ve fallen and I can’t get up” commercial really ISN’T funny, and on a side note, people really should dust mop their ceilings!) As I lay on the floor, helplessly waiting for someone – anyone – to come and rescue me – all my doubts came back.
I am “handicapped” and I am a “burden” on those I love.
At what point in my life will I not be able to contribute? At what point will this “handicap” be more than just a word? At what point will Delinda stop being Delinda? At what point will I cause more problems for those I love and my community than I can help those I love and my community?
Whoever said, “Sticks and stones may break your bones but words can never hurt you” was never labeled.
Words can hurt especially when you use them against yourself and then internalize them time and again. Then the doubts and insecurity returned because I didn’t want to be “handicapped.” After that comes the lamenting: “Why me?” I've tried to be a good person. I've tried to put everyone else first. I've tried to give, to share, and to have compassion for my fellow man. “Why me?” Is there reincarnation and was I Eva Braun in a previous life?
More realistically, life just happens and it happens to all of us. I can either have this handicapped label haunting me or get over it. Great advice but I didn't know how to do it. The next few weeks Pollyanna was having a real difficult challenge finding her sunny little smile. Until one day when I was moving at a snail’s pace at the office and I popped up with, “Geez, an old lady on a walker could be passing me by right now.” Then I realized, I may not be an old lady but I was the one using the pretty pink flowered walker! All I could do is laugh which was a loud reminder that obviously the spirit is stronger than the body. While I'm not a marathon runner I'm not going to let a label sidetrack my race journey in this life.
I may have MS, I may use a walker and, I may never be able to wear really cool shoes again, but I haven’t changed.
In the end, all that matters is my attitude and I won’t let a label change that.
Does listening to music help lower the severity of your stress or MS symptoms?