Please Stop Using the Word "Challenges": An Open Letter

Thanks for coming! I'm gradually moving my blog to Substack! You can check out this post here!

Updates

Jeez, it's been a while since I've posted, and when I wrote my last post I was in a very dark place and feeling utterly hopeless.

I'm happy to say that things have gotten better: At the end of May, I got a full-time job at an autism-friendly workplace in which I can use my drawing and writing talents. Despite my lack of professional experience in this area, my boss hired me based on raw talent, knowing that my lack of professional experience was likely Asperger's-related and not due to laziness and other factors people are often too quick to assume.

Ironically, I found this job through the school in which I had been taking the web development class. I haven't touched coding since I've gotten the job, however. After all, at long last I have a job doing work based on where my talents actually lie-- writing and drawing-- than in the "practical" areas that society says I ought to have.

While I enjoyed the environment at the school where I took the web development class, the learning process caused me a lot of stress and anxiety; it has since been confirmed that I have nonverbal learning disability, which I think might account for the difficulties I had in learning the material. While I might pick it up coding again eventually, right now I'm glad to be able to focus on my art and writing. I've been going to open drawing sessions, I've taken watercolor painting classes, and in November I'll be going to a one-day writing workshop.

I'm not completely financially independent-- the company I work for is a startup and does not currently offer medical benefits. My insurance is $234 a month (I opted for this more expensive insurance because of a procedure I have to have in a couple days, which will be explained below), and my parents foot the bill for that and help a little bit with the rent. And whenever I take a class, they pay for it. But it's still a far cry from where I was before, 100% dependent on them and feeling completely hopeless about the future.

Another update: In May I learned about something that initially scared me but have since learned is manageable: I have a cerebral aneurysm in my left internal carotid artery. It is 3-4mm in diameter, which is considered small. Since my blood pressure is excellent and because I don't smoke, it is currently not life-threatening. However, this could change as I get older. My neurosurgeon offered (rather than actively recommending, as all surgery comes with some risk) to treat it. I decided to go ahead with it because while right now the chance of eruption is next to zero, in twenty years we're talking about numbers like 10%-- a bit of a game of Russian Roulette. Right now, with the minimal risk, I was also glad to find out that I could even continue exercising-- running, lifting weights, swimming laps-- so long as I didn't do something extreme like run a marathon. Since I was given the green light for exercising, and since summer is my favorite season, I decided to go in for surgery at the end of the summer-- this Wednesday, September 20th, at Massachusetts General Hospital.

So what will they do? Shave my head, drill into my skull, and clip the aneurysm? No. Clipping is a process that is usually done on aneurysms on the surface of the brain. Mine is in my left internal carotid artery, and drilling into my head to access the aneurysm would be pretty risky. The surgeons are going to do a different procedure, one that is often employed for people with aneurysms that are deeper inside the head. They're going to insert a catheter in my femoral artery at the groin, run the catheter all the way up to my head, and deposit some coils inside the aneurysm sac. Since it's a wide-necked aneurysm, they will also put a stent inside the artery to hold the coils in place. The coils induce blood clotting and ultimately seal off the aneurysm opening to prevent blood from getting in. And I get to leave the hospital the next day. Pretty low-key surgery for what is technically brain surgery (sort of; the aneurysm isn't IN my brain, just near it).

Then, my parents will drive me to Pennsylvania, where I grew up and where they continue to live, so I can recover. I'm really excited because some friends that I went to film school with in New York City and who now live in Los Angeles are, ironically, moving to my hometown in Pennsylvania. They are there right now looking for a house, so I'll get to see them while they're there. They're probably going to be moved by Christmas, and they might start coming to my family's Thanksgiving and Christmas gatherings every year. So I'm pretty stoked about that.

However, the reptilian part of my brain is worried about complications during the surgery-- such as the catheter popping the aneurysm-- and I'm a bit nervous about going under general anesthesia because I don't know what it feels like. The idea of having control taken away from me-- "Here, we're going to stick a needle in your arm and you're going to go into medically-induced coma and there's nothing you can do about it"-- freaks me out. But the logical part of my brain thinks that the surgery will be uneventful, and recovery will be a snap. When I had an angiogram (which involves injecting dye through a catheter inserted into the groin, going all the way up to the head), the doctors gave me a sedative that had practically no effect on me. They said that even for a young person, I was unusually awake and alert during the procedure. They explained that it means my liver processes drugs very efficiently. So my guess is I won't be one of those people who is super fatigued after surgery.

Well, that's it for today's post. Sorry it's been so long, but as you can see it's been a hectic year!

That Moment When Your Perception of Reality is Turned Upside Down

A few weeks ago I was at my shrink and talking about how frustrated I was about certain things related to Asperger's, and a strong suspicion that I have a non-verbal learning disability. In fact, I thought the two were intrinsically linked.

My shrink told me that they weren't, and that I haven't even been diagnosed with Asperger's, and--

Wait, WHAT?

I told him that I sure as hell wasn't neurotypical, and that I was diagnosed anyway back in 2003.

He shook his head, and said something like, "A therapist saying that he agrees with your assessment is not a diagnosis. You need neuropsychiatric testing for that. I'm just floored that you never had that done."

"Yeah, well, nobody knew anything back then. In 2003, they gave me an MRI and an EEG. That was it. There was nothing else they could do."

He said that even though people didn't know what Asperger's was until very recently, neuropsychiatric testing has been around since the '80s. That's right, the 1980s! And not one person suggested I have it done, unless you count the psychological evaluation I had at age 8 at my school (but I don't think that qualifies). So this means that my boneheaded shrink that I went to from 1992-1995 didn't know to refer me for it; my very good shrink from 1998-1999 didn't know to refer me for it; and none of the other shrinks I've had-- bad and good-- suggested I have it done. Nobody! Not in suburban Pennsylvania, and not even in New York City!

My therapist does believe I'm on the autism spectrum, but I need neuropsychiatric testing to get an official diagnosis. And this would also screen for the NVLD I've been suspicious of for the past year; I've been suspicious because I've been taking web development classes and I'm always the last to pick up everything. Sometimes instructors and peers think it's a lack of attention to detail (ha! People, if anything, tell me I'm too hung up on details!) or that I'm distracted or whatever, but... there's something else going on. I can't even explain it. And when I've described to my shrink about what it's like for me to learn new non-verbal material, and how I do much better one-on-one, he said that what I've described is very typical of people with NVLD.

Yeah, so I have to look into getting DIAGNOSED after 13 YEARS of being sure that I've had Asperger's. If I don't have it, I don't know what it means. This really would warp reality as I know it.

One Quick Thing...

Lots of people I know tell me all the time not to compare myself to others. It's well-meaning, and I get it. But consider this:

It's so easy for them to say that when they haven't spent their life left behind socially and, in some cases, academically (non-verbal material is what I'm talking about here). The fact is, life doesn't exist in a vacuum. You have to compete in the real world, which expects a neurotypical, non-disabled brain model. If you don't have that model, you have go through years of anguish until you do have it. And if that doesn't work, you have to pretend to have it and hope that nobody discovers the truth. And if you can't do either, you're fucked, socially and financially.

So it's so easy to tell people not to compare themselves to others when they haven't spent their entire lives struggling to just be normal.

Check your privilege.