I know my life is certainly no exception of this. Most people know that life isn’t a predictable experience. In a blink of an eye your coarse on this timeline we share can be skewed, broken, averted, prepared for 0r guesstimated, but never really predicted.
Living with an inherited genetic progressive disease like FSHD Muscular Dystrophy has shown me just how important living in the now really is. I am the third generation in my family with this disease.
So I have experienced both perspectives, by observation and directly, what it’s like to be entrenched with this disability.
I also know what it’s like before and after FSHD symptoms manifest. At one point, I could walk. But that seems like a lifetime ago.
I’ve had my wheelchair for almost two years now. And the transition hasn’t been easy.
I was angry. No, I was irate.
Knowing that someday I wouldn’t walk, I should’ve better prepared myself.
So when I fell and injured my hip, which ultimately put me in a chair, it felt like the world ended.
And it did. It really did. Everything that I knew of my life was completely gone.
I didn’t realize how big of a game changer a wheelchair could be.
I couldn’t just get up off the couch and get in my car and go like I did before. I have a wheelchair now. I had to learn what my new boundaries were.
To go anywhere became this huge overburdened chore.
I didn’t realize what a daunting nightmare that would be especially when you don’t have accessible and or reliable transportation that could handle my wheelchair.
I tried everything over the last two years.
I talked to my doctor and to see if my health insurance would help cover the cost to adapt my vehicle into one that was accessible for my wheelchair. I was denied.
So I sought help from other organizations and for one reason or another I was denied. I was given the advice to try seeking assistance from family or churches in my community, but they were also unable to offer any help.
So I tried applying for loans and grants to help me cover the costs of adding a ramp or lift to my vehicle. I was denied every time because my financial resources are so little. So now what?
So since I couldn’t count on those options to be independent, I had to try another way to secure my mobility. I did try fundraising but that raised $0. I’ve even tried entering contests to win an accessible vehicle. No luck.
This wheelchair has destroyed my mobility, my social life, and in the name of transparency, its beginning to destroy me.
I had to drop out of college, because of unreliable transportation. My dreams of becoming a clinical researcher for neuromuscular diseases like mine ended.
I was a double major and on the dean’s list of my college in molecular biology and clinical psychology, planning the next several years of school towards my Ph.D., and now I’m at the mercy of others for even leaving my house.
With all of my challenges now, the effort, the strength to endure, the compatibility for the life that I have to adapt to, it was overwhelming. I felt worthless. I felt like I didn’t have anything to offer if I was locked-in for the rest of my life, just because I was too poor to get the medical equipment I needed.
I began to forget the things I was capable of.
My passion for the arts, creating drawings and jewelry, had stopped altogether. My health had suffered, my body began to give up, it was refusing nutrients from food, I had slipped down to 90 pounds. I was wilting away.
I needed to change.
The anger and hatred, the mourning for the life I once had needed to change if I wanted to survive this transition in life.
I realized that even as hard as things get, the anger and bitterness of lose of ability was going to eat me up alive. And I was already becoming a shell of my former self.
Despising life and what it has thrown at me was causing me to despise myself.
I was drowning, with barely a care to save myself.
Life is about taking control. It’s about rising above the challenge’s we are given. If it wasn’t for the hardships, we could never appreciate life’s wonders and blessings.
For me, it’s my daughter. I fight for her and to be with her for as long as I can. And some day she will also have to adapt to this horrible disease, FSHD Muscular Dystrophy. I have to set the example for her.
This is how I became a disability advocate. Obviously it’s a long way from a clinical researcher, but I feel this serves a better cause. If it wasn’t for my dark days and all of the difficulties I had gone through changing and accepting my life from my wheelchair, I wouldn’t be here now to write about it.
I decided to embrace my wheelchair and not let it envelope me. It’s a part of me now and I cannot let it become everything I am.
It can be devastating, for some, the thought of being a wheelchair user is more than most are willing to live with. Recently, 32-year-old Indiana hunter Tim Bowers chose death over paralysis, after falling 16 feet from a tree that shattered his spine.
We need to share our voices and experience’s of what it’s like, good and bad, to help all of us in the disability community deal, cope and to expose the challenge’s we face personally and on a global level. Even just to share a story or experiences from other’s can help someone through their difficulties. You never know who would be uplifted and/or inspired to make a change for the betterment of themselves and for all of us.
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