Stacie has been suggesting I get a disabled parking pass for a while now. I can’t blame her, considering my leg issues. There are days I can barely walk, and I use my cane a lot more than I used to. So yeah, it’s a fair request. Her rheumatoid arthritis gives her a parking pass she has to renew every two years. That sounds pretty good – I’m hoping my legs will be healed within a year or two.
I finally gave in and dropped my GP a message on MyChart. What’s the worst that can happen? She says no. I’m no worse off than I was before. If she says yes, I get rockstar parking when my leg isn’t doing great.
I sent it in at 7PM, well after business hours. Plus there’s a notice I get whenever I send a message through MyChart that essentially says it could take a few days if it isn’t an emergency because of the sheer volume of messages they’re receiving. So It’ll be a few days. No big deal.
At 10:30AM the next day, I receive a reply. Dr. Kalava is filling it out, and I can pick it up before end of business that day. OK then.
So we head out after Stacie gets off work, pick up the paperwork, and proceed to the DMV. As we head there, I look over the paperwork. Under reasons for needing a parking pass, it listed my leg (obviously) and a CVA, whatever that is. It also turns out to be a permanent pass that I’ll have to renew every 6 years at no charge. Stacie’s is only a 2-year pass that she has to pay for. So apparently I’m somehow more disabled than Stacie with her RA. Which is debilitating. RA does not fuck around.
I looked CVA up, because I was getting really curious. CVA is short for “cerebrovascular accident,” which is a fancy way of saying “stroke.” Specifically I have a “stroke due to thrombosis of left middle cerebral artery.” That would explain the damage to my left temporal artery, cascading into my right frontal lobe. It was apparently a severe one, considering it was a 65% blockage.
Now, I’m no doctor or any other kind of medical professional. I’m certainly not an expert on how brains work. But I am sure of one thing: brain damage is permanent. I’m not going to go in for an appointment with Dr. Kalava where she’ll tell me “good news! It grew back! You’re fine!”
I went into this expecting to maybe get a temporary pass until my legs healed. Instead I got a permanent pass for brain damage. Which means I have the second best parking spot at work now, second only to the CEO.
But back to the stroke. My stroke’s expression is “expressive aphasia” and “functional memory loss.”
The aphasia means I can’t talk right some of the time, I have a stutter that ranges from almost unnoticeable to incoherent, and I draw blanks on words sometimes which makes me absolutely loch up in mid-sentence. It also means my ability to type/text/write comes and goes. I can understand everything I read and hear as well as I could before the stroke, but I just can’t make the words come out. Which is absolutely infuriating when you can see what you’re trying to say in your head, but the translation software between your brain and your mouth is glitching out again. But it’s nowhere near as bad as what Bruce Willis is dealing with.
Typing is my preferred mode of communication now. Autocorrect catches a lot of the errors I didn’t used to make, and I can see if the aphasia is acting up. Plus all the other reasons people prefer text to phone calls nowadays.
And I can still swear. Fluently. The Wound Care team thought that was pretty hilarious – one of them made sure he was the last one out of the room, looked in the hall to see that nobody was within earshot, and told me to swear for him. I obliged with an enthusiastic “fuck you,” and he gave me a thumbs up and a big smile. It’s that kind of a team; you have to have a sense of humor when my wounds aren’t really a big deal compared to a lot of people who come through there.
“Functional memory loss” just means I’ve forgotten some stuff and I’ve noticed I forget things sometimes. It isn’t just being older, it’s a noticeable “what was I just thinking” sensation. Luckily I always carried a notebook even before this happened, so I just make sure to talk notes whenever I think of something I’ll need to remember.
For about two months I couldn’t read. It would take me an hour and a half to read a chapter of Heir to the Empire. I would read it in bed because after a chapter (or less) I would have to take a nap. This is not exactly a book intended for doctors and lawyers. Eight months on, and I’m back to what I consider a normal level of literacy and don’t require nearly as much recovery from thinking.
It also means there’s a significant chance I’ll simply lose my car in a parking lot. Hence the parking pass. There’s also the simple fact that exerting My Mighty Brain still wears me out something fierce. There are a lot of days where I get home from work, sit down at my desk, and proceed to fall asleep.
It also mans I am unambiguously disabled. This isn’t a temporary disability caused by an injury. This isn’t a disability that amounts to a dietary restriction like my diabetes.
This is permanent brain damage with obvious effects to anyone that’s paying attention. It gets so bad sometimes that I have to have Stacie order for me at restaurants. I couldn’t order for myself at all for over a month after I got out of the hospital. Conversations are almost impossible sometimes. Sometimes I can’t write coherently, which is a problem since part of my job involves labeling wires so other people can read the labels. I forget things. I could probably go on SSDI if I wanted to.
And it fucking sucks.
None of this makes it any easier to admit to myself that I am capital-D Disabled.
On the upside, the people I know aren’t assholes. Stacie explained the situation to them when it happened, and some of them knew people who had strokes, so that makes it a lot easier. The first Xmas, when I could barely talk and everything wiped me out was hard. But Scott and everyone else seemed to understand why I mostly just sat in a chair, didn’t talk much, and dozed off periodically.
The people at work are surprisingly understanding. Stacie thinks there were Conversations with some of them amounting to “give this guy shit about the stroke, and it becomes a decision between firing you and a potential lawsuit from an employee with a stellar record and a demonstrable disability. That’s not a hard decision.” So far most of them have figured out through exposure that I have the issues outlined above, and that’s just become normal. And that’s how I like it. They’re not bending over backwards for me, they’re not doing that weird performative sympathy thing, they’re just doing their jobs and letting me do mine with some accommodations if I happen to be having a bad brain day.
But all that said, it’s a really weird place to be in. I have to accept it because it isn’t going away, but it isn’t easy.