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noah-liketheboat · 1 year

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I’ve recently begun using a wheelchair. Here’s the scoop.

I also started using forearm crutches even more recently but we’ll get to that in a second post bc this one got too long

I got my chair for $325 on OfferUp. It’s a motion composites Helio A6, and it has some fancy cushions on it. All in all I got it like 88% off of original price and it’s in pristine condition. Well, it was, until I brought it home and within 24 hours my cat scratched the (pink!!) paint job and put holes in the cushions. Thanks Misty. It now lives in the back of the car for its protection.

I put a clip-on cup holder on it and purple/white spoke covers. It’s pretty sick.

I use my wheelchair instead of walking/standing probably 30-40% of the time.

Personally

Oh my god it’s helped so much. I have so much more energy. I don’t flinch when I stand or walk. I can wait in line for food. I’m not dizzy, embarrassingly sweaty, and spacey just from standing in line anymore.

Because the previous owner spent literally $1,000 on special cushions (seat and back), I have the comfiest seat in any room 96% of the time. 10/10 would recommend. It helps with the back pain too obvi but first and foremost it’s so comfy.

I can go to the zoo. I get into the zoo for free because college but I can’t ever go because I can’t tolerate walking and standing for so long. But now I can go to the zoo!

I have more energy at the end of the day to participate in household chores and life. Before this, all my time was spent either in school or trying to recover enough to go to school again. Even doing my homework was difficult because of the fatigue, let alone date nights, hobbies, cooking dinner, sweeping the floors… it caused a lot of tension between me and my partner as well as my general being miserable.

Very steep learning curve. Very steep strength curve.

The ramp to my math class isn’t a steep grade but it’s long. When I started using it, I had to wheel up backwards. I got out of breath very easily and my shoulders were always aching something awful after going between classes. Now that hill is quite manageable and I only have sore shoulders if I’m going really fast or really far.

Wheelies. An unexpected but important skill. One that I am not good at. It took me weeks to get my wheels off the ground at all, but once I did I had a huge improvement and quickly was able to get my wheels ~6 or 8 inches off the ground. I still can’t sustain it though. I use them to go over bumps and get started up awkward ramps sometimes.

It’s been an amazing improvement to my life. I’m more independent, in less pain, happier, and more energetic. I should’ve done it earlier.

Observations:

People are weird. They talk to me more. Like, strangers ask me how my day is going in the elevator, people make small talk when they hold the door. This isn’t necessarily negative, but it is weird.

Kids stare. Adults also stare but they try to hide it. I don’t mind when kids stare though. They’re just curious and unaware.

I’m always a little nervous to ever stand up or walk out in public in case someone either thinks it’s a miracle and starts praising the lord or like hate-crimes me for “faking.”

When I wheeled in to all my classes after spring break, my teachers and seat mates were all instantly “oh my god what happened are you ok???” It’s a little awkward to explain that it’s just nerve damage that’s been getting worse.

People usually say “I’m so sorry” or “I hope you get/feel better soon!” And it’s like. I know their intentions are good, of course, but I don’t want people to be sorry! This has been an amazing life change for me! Also I’m not getting better, certainly not any time soon, and conversation gets awkward after that.

I think when I tell people it’s not really a “get better” thing, I think they at least subconsciously think it’s terminal or something?? Like. I’m not dying of nerve damage. I had nerve damage before spring break too. It’s just I finally decided to do something besides suck it up and hope I can make it through the day.

My campus is not as accessible as I once thought. The main culprit? UNLEVEL SIDEWALKS. They are the bane of my existence. My right arm will be pumping like my life depends on it and my left will be almost doing nothing. And then later when I’m doing the other way it’ll be the opposite.

There’s no ramp on the other side of one of the buildings I walk through to get to class. That was awkward.

There’s also a lot of cobblestone-type walking areas. Not only are they hella bumpy to wheel on, but they’re old and not well maintained. The cracks between slabs and the potholes can and will eject me from my chair if I’m not careful.

Funny story #1:

I rolled into the disability center on campus to take a test, as per usual (extended time and testing environment accommodations) and they had me wait while they got everyone else seated, which was weird, and then the testing coordinator came over to me and sat down next to me and was like “heyy how are you?” And I was like “I’m good, I’m good! Ah, well—*gestures to chair* yknow.” And she goes “Yeahh of course… so is this… new?”

Is it new??? Ma’am you see me every three weeks on the dot for tests, and every time for the past two years I’ve walked in on my own two feet, and today I come rolling in as I’ve transgendered into a vehicle. Yeah it’s new!!

Don’t worry I didn’t say that. I said “yeah, well, kind of. The chair is new, but the reasons aren’t. It’s just helping me a lot and my life is easier with it.” or smthn like that and she was like “oh ok good cool great”

Anyways, she just needed to tell me essentially that she would have me take my test at a height-adjustable table. Same room, same everything. Just instead of sitting in a test cubby I’d be at what’s essentially one of those standing desks. I was all nervous just for her to sit me at a table I can crank up and down like an old car window.

Funny Story #2

I’m rolling across the courtyard(??) in front of the library where they were having one of those random college of business things with tents everywhere. You’re aware. Just trying to get to class.

I hear “Hey! Excuse me, hey!” from behind me and I turn my head to see a girl frantically waving me down running across the grass. Naturally I’m intrigued.

She gets to me, a little out of breath, and then goes “Would you be interested in playing tennis?”

I look down at my chair. I look back up at her. “Ah… no…”

She was talking about adaptive tennis. Which I could’ve guessed probably but I was caught so off-guard and I was real confused.

She invited me to join the adaptive sports program/club thing, which is headed by a disabled professor but run entirely by able-bodied students (who get a class credit for volunteering with the organization, essentially). I told her I was really new so probably not, but I was willing to look into it. She gave me the professor’s email and I sent him an email like “hey one of your students flagged me down to talk abt adaptive sports but I’m shit at wheelchairing so probably not but I’d love to meet up and chat and get to know more about the program and stuff.”

It’s been a month. I haven’t gotten a reply or acknowledgement or anything.

All the stuff I can find about the program is obviously directed towards able-bodied students wanting them to volunteer or take the class. The Instagram has a post with each student in the class getting a slide with their lil intro and stuff. The professor only appears in group shots. At any rate I’m not that invested.

Personal Relations

Abled ppl when I told them I’m getting a wheelchair: oh no!! I’m so sorry!! What’s wrong!! That’s awful!! :((((

Disabled ppl when I told them I’m getting a wheelchair: omg that’s amazing I’m so happy for u :)

One exception to the able bodied trope: my youth group Bible study, surprisingly. I was sharing that I was really feeling a lot of turmoil about my decision and all that jazz and they were like “just do it. you already know it’s the right choice, and ur strong enough to do it” and they all “oohed” and “ahhed” when I rolled up with it next week. 10/10 queens.

My wheelchair has caused so many personal relationship issues in my life. So many.

Suddenly everyone’s a medical expert in me specifically. Everyone besides me knows what’s best, and what’s best is not a wheelchair. People who used to ask me what was wrong with them when they had a tickle in their throat or fell on their foot funny have apparently become scholars on complex hashimotos, nerve damage, neuropathy, and any and all suspected other conditions I may have. I wonder when they had time to do that, since they still don’t know how to care for a simple kitchen injury.

When I point out that the alternative to the wheelchair is constant+worsening pain and ask them if that’s what they think is best, these overnight medical experts get all huffy and don’t have an answer.

I have done extensive research about all my diagnosed conditions and possible ones over the course of many years. I’ve been in and out (mostly out) of at least a dozen doctor’s offices and done several rounds of different types of PT. I also live in my body 24/7. One of my earliest memories is of waking up my aunt at night during a sleepover because my nerve pain wouldn’t let me sleep. I wasn’t any older than 4. Back then the only words I had were leg cramps and growing pains.

I didn’t know my pain was abnormal for a long time. I’m good at hiding it. I’m good at “pushing through.” I experienced severe medical neglect, to the point of it being life-threatening, for nearly 2 years in the TTI and I was punished any time I tried to advocate for myself and my needs or really even talked about how I wasn’t physically well.

Basically I gave up trying to truly tell people how bad my quality of life was when I was about 16 because I wasn’t believed and I was often punished and/or had it used against me.

Nevertheless, everyone (read: my partner, my parents, and my partner’s parents) in my life thinks that I’m terrible awful wrong bad lying etc. for using the chair.

I’ve been using it for ~2 months and this is the first week my partner hasn’t argued with me about it or made an unnecessary comment. #1 worst thing they’ve said is that I’m “neglecting half of my body” by not walking 24/7. Oooh that made me mad. I do my PT almost every day, I stretch every day, I know exactly what almost every ache and pain originates from, I check in with my body constantly throughout the day. But I’m “neglecting it.” Not to mention that after my second appointment my Doctor specifically said he wants me using the chair until at least June.

My partner was originally very supportive, but then they talked to their mom and suddenly everything changed and they are borderline vindictive about my chair. Their mother is a Doctor, true, but most of her career she was a PICU nurse and also knows exactly nothing about my medical history except that I’m allergic to pecans and walnuts. Oh, and their dad has a friend who cured hashimotos by going gluten free, so obviously I’m just not trying hard enough or smthn. ((I’ve been almost gluten free before. No change.))

I cried every week about their attitude towards/comments about my chair except for this one. Every time I felt confident about it I would remember everything they said and my shoulders would physically slump. But no matter how many times I brought up how hurt and uncared for I was feeling, it ended up with me crying and them being either the same or more solid in their beliefs.

My therapist is a saint.

On the brightish side, my family and partner have finally begun taking my health and chronic issues seriously. I went to the Doctor two weeks after I got the chair and got started on a new medicine (a loop diuretic if anyone’s curious).

My mom keeps asking if I’m “better yet” and it’s really hurtful for some reason? She wants to know all my improvements, but when I start to say how my chair has helped so much, she cuts me off and says “no I mean the medicine.”

I am on the lowest dose they make, and I only take it every other day. I haven’t lost any weight since starting it (loop diuretics work by flushing excess water out of your body via peeing every twelve seconds, and this leads to weight loss. It’s estimated I’m carrying ~30lbs in water weight). Again, it’s been nearly two months. I’m the pissmaster 9000 every other day.

My mom at some point said she just “can’t accept that I’m in a wheelchair at 20.” My brother in Christ, what does that even mean? I’m not even using it full-time, or even the majority of the time.

I’ve had a follow up with my Doctor since I started but he kept me on the same dose even though I told him I haven’t lost any weight. Cest la vie.

He did tell me he wants me using the chair until at least June, and if all goes well he’ll start me in (another round of) PT, and it sounded like he wanted me doing decently intensive PT because he asked if I was in school in June and said it was good I wasn’t. If I go to PT, the chair usage advice will be passed on to them.

This post got far too long. I’ll split my crutches experience into a separate post and link it here once it’s up.

The chair herself. Yeah it’s in a bathroom don’t worry about it.

#wheelchair #disabled #mobility aid #wheelchair user #disability pride #ableism #disability #adaptive #new wheelchair #pimp my ride

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