Life with a complex disability, like SMA, is obviously challenging. It takes a great deal of physical, emotional— but, most importantly, logistical— strength to power through each day. Your brain a…
“You’d think I’d be ecstatic. You’d think I’d be over-the-moon with happiness… you know, just like R. Kelly is in a room of underage girls.
But, I decidedly was not. For I knew that my current wheelchair had to survive until the new chair arrived— which could still take months. And that was the biggest gamble of all.
Because, you see, Medicare would not authorize repairs to an existing wheelchair while a new wheelchair is being ordered. So, I would be majorly SOL if my current wheelchair took a crap in the meantime. Therefore, each bureaucratic delay— each kink that I had experienced in the process— increased the probability of this happening.
And, yesterday, the laws of probability— the laws of mathematics— finally caught up with me. A “RIGHT MOTOR FAULT” error message brought my wheelchair to a halt.
This isn’t the first time this has happened during my wheelchair-using life. In fact, with this wheelchair, alone, I have had to have the motors changed FOUR TIMES. Yes, that’s right. So, when I saw this “RIGHT MOTOR FAULT” error message, I instantly knew that in about a week, my life was seriously going to go down the toilet until I could get new motors installed.
With the arrival of my new wheelchair nowhere in sight, and the necessity of having a functioning wheelchair, I had to do a painful thing. I asked the DME company to order me a new set of motors. I agreed to pay the hefty price. Because, this wheelchair is my basic tool of life, and without it, I can’t function. The DME company understands my pain and kindly agreed to give me a cut rate, but it’s still more money than most people pay for their first shitty car.
To be honest, I actually cried. I sat and cried because I was going to have to find a thousand dollars to fix a device that allows me to live.
It’s demoralizing. And it makes me feel very, very small. In an inaccessible world that’s already stacked against me— a world where I have to be smarter, wittier, and more prepared than everyone else— I still have to scramble for this most basic thing.
But, I don’t have a choice. So, I applied, and received, a disability grant from NMD United to help me pay for some of my replacement motors— and I set up a GoFundMe to cover the remainder of the cost.”
