I have FSHD Musclar Dystrophy. I use a wheelchair. I have issues with arthritis, chronic pain, muscle weakness, dexterity, and grip. I can't raise my arms above my chest, I tend to use the "hunt and peck" method when I type, I'll have problems with my hands grasping, grabbing, and holding some things sometimes.
You might think just by a glance that my mobility issues intrude upon every facet of my life.
It is true that all these issues and more not mentioned, because of my FSH Muscular Dystrophy, I do suffer from. It's frustrating with this disease to slowly have your abilities slip away from you. I've tried to explain to others what it feels like.
From one day being able to run and climb and to just be physically free to do anything and everything your body will let you.
To being ever more trapped inside a body that you are losing control over as time goes by. If you have seen the movie "Being John Malcovich" when Cameron Diaz' character enters into the mind of John Malcovich for the first time. She can see and hear and think through the eyes of John, but she has no control of his body.
It's kind of like that.
It's my thoughts and my mind in the same body as before, but a body that relentlessly over time, I lose the strength in my muscles to move.
Dancing, bike rides, even the loathed climbing of stairs, all physical actions I no longer have in my life. Actions I desperately miss and that so many people take for granted. And yes, it's not a stretch to say that I would give anything to be able to hop up out of this here wheelchair and go climb a mountain. But actually physically climbing a mountain, for me being wheelchair bound with FSHD, is now a little bit more of an unrealistic and quite physical goal to aim for.
As more and more of my physical life disappears from me, it can get depressing. For me, growing up I was a tom-boy. I was quite physically active and loved to run and ride my bike, play sports like baseball in the yard, go swimming, and I climbed to the tops of anything I could get myself up and onto. It's the more physical activities that I miss the most.
Luckily, I also have a creative and artistic side, which now, I have fully indulged myself in. writing, drawing, painting, crafts, music, singing, poetry, pottery, cutting up, gluing down, repourposed, and innovative works. If it's making and creating, I love doing it. It's one of my favorite ways to express myself artistically in making and creating with my hands..
After I lost my ability to walk two years ago due to the complications of a fall that broke my hip and my FSHD, I had a lot of difficulties adjusting to a wheelchair, and regaining my own semblance of life. I tried everything. My insurance, fundraisers, contests, etc., I went to every source I could find and was referred to, just to try to get the medical equipment I now needed to get back out there into the world on my own only this time with a wheelchair.
I needed a ramp for the van I owned at the time. I was denied or had otherwise struck out trying to get back on the road for both my daughter and myself. After being denied help or assistance from all the resources and organizations out there to help someone like me. I was left with no options.
My vehicle at the time was also in great need of repair. It ran but not the best, the overall value of the van was way less than the cost to repair it. So now with limited disability income and no help, I was forced to sell my van because there was no way for me to transport myself and my wheelchair with it. It was just sitting in my driveway, there was nothing else I could do. The van wasn't worth more than a thousand bucks anyways.
I was told to give up my pursuit for a wheelchair accessible vehicle.
I was told to give up on an independent life.
I was told to give up.
Before my fall and the wheelchair I was independent. I was in charge of my own life as a mother of one. But since that day, my life hasn't been the same. I'm 34 years old with a 12 year old daughter. I was living on my own and raising her on my own, while already struggling with the symptoms of FSH Muscular Dystrophy one day, to being stuck home with my wheelchair completely dependent on other people for all things that needed to be done and/or gotten outside the door to my home the next day and everyday since because I now have a wheelchair.
With the struggles I have had with getting back my life and on the road, and it's the same sort of story for so many disabled driver's out there without their accessible vehicle's, we need to gain awareness of the difficulties and challenge's we face to try and reclaim the roads and how important it is to life that we do so.
It seems now that just because I have a wheelchair, I no longer have the freedom and independence that I once had. Transportation is a huge issue when you incorporate a wheelchair into the mix. Public transportation is unreliable at best. With size issues with a wheelchair, they don't always fit onto the bus. That is, if you don't get passed up at a stop by a driver unwilling to service you, or there is some additional issue with their equipment or training on how to use it.
Coupled with inaccessible walkways, sidewalks, buildings, stairs but no elevator's, curbs without ramps, narrow hallways, walkways, isles in stores, shelves that are too high to reach from, and other failed attempts to accommodate those with mobility issues in public spaces, life from a wheelchair is hard enough.
We need to do more to help out those individuals with disabilities. Right now this world isn't built for us and the accommodations to make things easier for those in the disability community in public spaces are lacking the basic real world functionality to actually assist us.
Don't believe me, then try it out for yourself. I invite any to sit a mile in my seat.
With the independence comes the empowerment and inspiration for drive and to thrive, to have dreams and to achieve anything we want.
We need to do a hell of a lot more to help those in the disability community into their own independence.
One way to start is accessible, reliable, affordable transportation so that we can dream again. To strive and want more out of life and to be more. Mobility independence is extremely important for those with disabilities with wheelchairs and other mobility issues.
Without proper accommodations to the needs demanded by a disability, we are left without the ability to leave their homes. Dependent on others, forced to ask for help in situations they otherwise would be able to take on themselves, if they had proper adapted equipment. Forced to become and live as a disabled stereotype on Disability income and other assistance, simply because we have now way to obtain what we need.
Equipment only attainable it seems as an expensive cash product. Not affordable for the individuals who see the same equipment as paramount to functionality, due to extremely high cost vs. the extremely low income of those who actually need the equipment to participate in everyday life.
We need access to the equipment we need, not more barriers put in front of us to make it harder, even one as simple as financial burden. Help us to live up to our potentials and fulfill their own dreams. Help others see their own worth and talents inside themselves and help them to share their unique gifts with the world, instead of leaving them out by forgetting about us at home.
Help us achieve an equal footing to this world.