Oof - the stresses of disabled lifeMar 21 06:00
When AB people talk about being stressed, it takes all the mite I can muster to not laugh in their faces. They may know stress, but they don't know real stress until they've lived a life of a quadriplegic.
When you're dependent on a powerchair for your legs, caregivers to get you out of bed (and into bed every day), as well as insurance that you must not lose, it's hard to sympathize with other people's stress-inducing problems. Does this sound bad? lol
Let me give you an example of how stressful the typical quad-life can be: Last fall, I began the long processes of ordering a new wheelchair. While I finally have my NEW wheelchair in my possession, it's still not ready to use...5 months later. It sits too high from the ground and needs a lot of other smaller things fixed (this by the way is about average when ordering a new wheelchair).
I was going to make an appointment to get it fixed, but then another problem reared its ugly head - my van stopped working. Great, now going to the wheelchair repair shop is out of the question. Please, just let me not drop this Chipotle taco.
After bringing my van to the shop (hand controls/brakes had an air leak; I have pneumatic powered hand controls), I was told just today actually that my hand-controls are not made for Minnesota weather. Grrreat....really wish they would've told me that when I got them 6 years ago!
And to get my hand controls replaced with ones that are better suited for Minnesota's freezing temperatures? Oh, a cool $45,000 for digital hand controls. Yeah, like that's going to happen. Being a wheelchair-user can get incredibly expensive (this btw is the biggest understatement ever penned on my blog).
See, everything that happens has an effect on something else, which is why using a wheelchair can cause so many headaches. I usually shy away from blog posts like these because it makes the life of a wheelchair-user seem pretty bad (and we all know it's not), but sometimes it's good to put your problems out there just so other people can relate.
After leaving the wheelchair van place and saying, "Thanks but no thanks" to the digital hand controls (hell, paying my bills barely happens most months), I zipped back home for an important conference call with my case worker. Strangely - I was somehow enrolled in Medicare this month (I'm usually on Medicaid), and out of the blue had to start paying co-pays on my prescription drugs.
Wha?? Yeah, this had never happened before. So in the middle of my workday, I had to devote time to this, and by the time I figured it out, I had found out Medicare was also planning on taking $100 out of my account each month because of my drug plan. Great. One more thing to fix.
First, my new wheelchair is broken, next my van, then my health insurance, and to top of it all, I've been trying to hire new PCAS, since in the last month, two have had to be fired or quit because of depression. WTF. Back to finding folks on Craigslist, which is how I do it, and is one of the most annoying tasks ever. People will just blow you off and not don't show up. I'm still waiting to hear back on one's background check even (apparently a DUI in 2010 can make you ineligible to be a PCA in many states).
So there you have it. Next time you see someone in a wheelchair and feel bad for all the physical things they can't do, stop and instead think about the other headaches they have to deal with. There's a lot that happens behind the scenes, and it's not very pretty.
How do you deal with disability stresses?
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Tiffiny Carlson is freelance writer and writes the “SCI Life” column for New Mobility. She's also a C6 quad from a diving accident that occurred when she was 14 years old. A lifelong resident of Minneapolis, Tiffiny has been a writer in the disability community for over 10 years and writes for several publications and blogs, as well as her personal blog BeautyAbility. Her work has also appeared in mainstream publications such as Nerve.com and Playgirl.