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Hallo, willkommen

This blog is a personal record of the life of a chronically ill (chronically awesome), disabled, dyslexic, doctoral student and entrepreneur.

I share the beautiful moments, and the hard ones. It's unfiltered, and extremely uncensored.

Enjoy!

Motorcycles and Wheelchairs

Motorcycles and Wheelchairs

*note before we get started* when referring to someone who uses a wheelchair, especially full time, the terminology is NEVER "confined to a wheelchair." This is an (internalized) ableism thing I wasn't aware I was dealing with until about a couple of years ago when I stumbled across a piece about that phrase in my reading travels. I had never heard differently, nor thought about it much, if I'm being honest. And the idea of someday having to use a wheelchair was sad to me at that point in time when I was much sprier and more abled, so obviously I (and many other folks, I suspect) was looking at it from my own imbalanced and fairly uninfomred perspective. But see, wheelchairs are freedom, not something you're confined to. They allow you to live your life freely and fully instead of being "confined" to your home. It's a very simple change of perspective that also shifts the whole conversation about disability. Terminology is important. It can change everything.


I am a 30-year-old disabled biker chick. Yup, you read that right.
I ride a gorgeous black and silver 2018 Honda Rebel 500 named Kino. I've put  over 2,000 miles on her so far this season.
I also have Fibromyalgia (FMS), Ehlers Danlos Syndrome (EDS), Dysautonomia, and a myriad of other fun conditions and comorbidities. But the FMS & EDS are the most relevant to this conversation.

So, if you've read any of my entries up to this point, you have a rough idea what living with these conditions is like for me. To quickly summarize in case this is your first time here, there are about 10,000 facets to my conditions, but the primary ones in relation to where this article is going are hypermobility (joint dislocation/subluxation), pain all the goddamn time, fatigue, brain fog, and autonomic nervous system issues (more specific info here and here). As you probably know, at this point in time I use a cane full-time to get around. It's used for stability and pain reduction, primarily. It also makes me look hella badass *wink*. I have days I struggle to get out of bed, and days where I can still climb mountains... though I often have to tape my joints in place first. Sometimes I have to wear a neck brace to hold my head up, and sometimes I almost don't even need my cane. That's part of the nature of my conditions; the wild fluctuation. One day being at one extreme, and the next at the far other. I find that a lot of folks with a variety of chronic illnesses/disabilities experience something similar. Good days, weeks months... and really bad ones. Each day is a mystery and a surprise.  Never a dull moment as a chronically ill disabled babe, that's for sure!

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Rolling back about 7 years now... I was 23 I think... or thereabouts at least...  I was chatting with my doctor about my FMS and my new EDS dx (to clarify: I was born with EDS, but only got the diagnosis in my 20's for a variety of reasons I don't have time to get into here). I was trying to figure out what my prognosis was, what my life moving forward would look like and so on. He told me very directly that my cane usage would increase (I was fluctuating between part-time cane usage and trail running at that point in time), by 30 I would be using a wheelchair part-time, and that by 40 I'd be a full-time wheelchair user. And I 100% did not believe him. Absolutely not! I started getting my health under control, changed my diet, started using natural therapies (I'd tried all the conventional meds on the market for my conditions. More on my dive into natural alternatives here), and really kept myself level for a long time. But when I was about 27 or 28 things started going downhill (as degenerative things do, no matter how well you take care of yourself). I started needing to use my cane full-time, but figured it would be a slow decline. I was wrong.

I am now 30, as mentioned above. Last Saturday, all alone in my office after an extremely long day, in some of the most excruciating pain I've dealt with in a while, sitting with a dislocated hip & a lot of other subluxated joints, unable to get up by myself (which sucked as there was NO ONE in my entire building), crying softly to myself as my depression and anxiety were spiraling, I realized that it's time. I need a wheelchair.
(& I talked to my doctors, & they all agree)

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I've had the thought kicking around in my brainpan for about a year now, that on my really bad days, on days I travel a lot or have to stand a lot, that a chair would be sooooo helpful. But I didn't need it. But I'm having more and more days that I don't do stuff because the idea of having to walk that far or stand that long is just beyond what I can comprehend. More and more days I just stay in bed because it is so overwhelmingly painful and exhausting to try and navigate the world around me. And I am NOT a stay in bed kind of person! But that's changed. While the "not being a stay in bed person" has not changed, the need has. There are 3 or 4 days or so a month where, I admit, I properly need a wheelchair. And I am aware that the number of days it's needed will only increase with time. And it seems to be increasing quickly. And the longer I wait, the more of my life I'm losing to stubbornness. 

I have intellectually known this day was coming, even if I didn't really believe it, for years now. I've known it was approaching soon-ish for the last few years. I have my chair picked out. I am a big believer in "wheelchairs are freedom!" I am super pro-chair. I can't fucking wait! I will be able to go to the store, kick around museums all day, or visit the city without it destroying me for days to weeks, which will be an AMAZING change of pace for me. I'll be able to have so many more adventures! But something about coming to this realization, alone, after a long week of extreme pain, in the middle of an unrelated emotional rollercoaster ride was just so... crushing. I cried. A LOT. I went out with one of my best friends (even as a total introvert, I'm super lucky to have a few people I consider my best friends. So lucky!) and hit up some pubs. I cried into a $12 cocktail and ranted about inaccessibility over a $5 beer. It was a diverse evening. I spent several days in a weird depressive funk (which, over a week later I am still mildly in, though pulling out of). It's not that I'm bummed about the chair, but rather that between that and my cognitive decline, I'm just so anxious about my independence (something I am world-famous for... not always in the best ways), but also my own perceived value. There's a lot to unpack here, and honestly, very little is about the chair itself, as you may be noticing.

I also spent some time thinking about the bizarre juxtaposition of going from a motorcycle one day to a wheelchair the next. Am I being overly dramatic? Do I really need a chair? What will other people think? I mean, a crip chick with a cane on a bike is already something that raises eyebrows (and rewards me with lots of House, M.D. references, which is a total win). But riding to the coffee shop like a bad bitch on my bike on Tuesday, and then on Wednesday transitioning from my car to a chair just to grab a cuppa joe? That's... ridiculous, right? But honestly, that's just my own ego and internalized ableism getting in my way. My disabilities are mostly invisible, and as established above, are volatile, fluctuating wildly day to day. I shouldn't be ashamed of that, even though I know it's hard for other people to understand. Also, riding my motorcycle is actually a lot easier on my body than sitting in my car. A lot! Car travel, even for short distances at this point, leaves me in a pretty good bit of pain. I can ride my bike for hours with only mild hip and neck discomfort. Pretty significant difference!

And yeah, some days I need a chair. Because a lot of days I can walk and hike and climb and stand, but doing so wears me out quickly, I fall really un-gracefully, and the pain gets unimaginably bad. And if I want to be able to enjoy an entire day out with someone, or not have to sacrifice the rest of my week in recovery to compensate for taking a trip or going on an adventure (even a small one), I need a chair. And coming to terms with the fact that I can want and need both a motorcycle and a wheelchair in my life is really weird! And really hard. But also I kind of love it? Because there's so little about me that's normal or conventional. And it's a great platform for education. And most importantly, it's good for me, and fuck what other people may or may not think! I have spent so much of my life catering to the needs and wants and opinions and feelings of other people (a CPTSD thing, as well as a "me" thing) that it's weird for me now to begin to try and prioritize what's good for me, what makes me happy. And riding my motorcycle makes me more purely happy than anything else I've ever experienced, & is excellent for my mental health (which needs all the help it can get!). It's also good for my back and keeps all my muscles strong/active. And being able to travel, go places with people, have adventures without being in mind-numbing pain also matters to me. Not breaking my body little by little just so I can go to a lecture, or on a date, or to run errands is good for me. Being true to me, caring for my physical, mental, and emotional wellbeing is important, and I'm getting there.

Acknowledging that I'm a badass through and through has been a big thing for me to wrap my brain around. Whether I'm using my cane, riding my bike, or wheelin' around town in a chair... whether I'm giving a lecture, or working on my thesis, or playing one-handed mini golf (cane in 1 hand, putter in the other)... or whether I'm laying in bed or sitting quietly in the coffee shop reading... my badassery that I love so much isn't defined by my mode of transportation, or how I dress, or the way I talk, or what I'm up to that day. It's ME. It's inherent to who I am and how I live my life. And that's been a big realization. It kind of goes hand-in-hand with my ongoing struggle (see: internalized ableism) with "but the less mobile/productive/etc that I am, the less valuable I am! Who would want a broken, forgetful, poor AF girl like me? I certainly hardly want her some days..." But I'm working through that, too. Because as I can so clearly see for everyone else, people have inherent value. Our value isn't defined by how clever we are or productive we are or how many things we can do or how much shit we have... if anything, our value is, at its core, based in kindness. And I wrote a while ago about my struggle with intellect vs kindness, and how, even though I think I'm a pretty kind person, that's something I am choosing to invest in and cultivate more and more. Because, in the end, there are things we can control, and things we cannot. That's just the way of it. I cannot control the way my body works. I can choose to live fully in each and every moment and embrace kindness and reason in all things. As fucking cheesy as that sounds. I can work hard to better the world around me, in big and small ways. But as those ways get smaller and smaller, I have to keep reminding myself, my value does not decrease as well. Which is a weird thing to come to terms with, but here we are. 

So, wheelchairs and motorcycles. Motorcycles and wheelchairs. What have we learned?

  • The Honda Rebel is a sexy-ass bike.
  • Disability is not a monolith. It doesn't have one visage, or behave in one manner. Not even within one person!
  • Ambulatory wheelchair users are totally a thing. People who use chairs and can walk or get up from their chairs, with or without other aids (like a cane) aren't "faking."
  • Inherent value =/= productivity, financial value, resources, creativity, or anything else. We are all valuable despite what we are able to give back. 
  • Invest in kidness.
  • Even loud and proud disabled folks still struggle with internalized ableism.
  • Wheelchairs are freedom! Not something you are confined to.
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Post Script:
For the record, just any chair won't do (despite my mother trying to give me the $5 Salvation Army retired hospital chair from the 1960's she bought years ago and has been sitting in her garage). Becuase I'm me and marvelously broken (physically, at least), I need a proper, specialized, customized medical device. And the chair recommended by my doctors, that I picked out and have been slowly saving for for a while, is $3,000. Probably a smidge more after taxes and what not. And no, despite saving, I don't know how I'm going to pay for it, especially since I just had to take out an $8,000 loan to pay my medical bills.

And no, my insurance won't cover any of it because it's "not medically necessary," somehow. I'm not sure who gets to make that decision, but I'm not thrilled with them, at the moment, nor is my doctor. The American medical system is absolutely amazing, y'all. Def no need for any improvement or reform. I highly recommend it. *eyeroll emoji*


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