Reflections on getting older as an autistic person
Like a lot of autistic people, I’m not fond of birthdays … especially my own. I’ve hinted at this in past articles, how my birth certificate is a legal fiction created for my by the Los Angeles Department of Children & Family Services when I was about 4ish. Nothing about it is true. So, I don’t trust the date that’s there. Because of the nature of my being taken into care, my actual birth documents are under court seal to this day. I lack the resources or the desire to get them unsealed. At this point, I’ve pieced enough pieces of the puzzle to get a decent view of my first years.
I tend to refer to my birthday as my “sell-by date,” like those found on tins of beans and the like. I do this both to be cheeky and to call attention to the fact that people with medical histories like mine rarely live as long as I have. Indeed, by medical provider has tried, many times, to end my life through either sheer incompetence or blatant ignorance.
I don’t eat cake, or sweets for that matter. I’ve eaten the same things (exactly) for many years now. A simple menu that is 85% saturated animal fats, 12% animal proteins, and the rest from low-glycemic carbs. Zero sugars are in my diet. None at all. I also stop eating by noon so my overactive brain will shut the heck up and I can get a bit of sleep. This lifestyle doesn’t make for a fun party life.
Unlike most of my friends, I weigh about the same as I did before the pandemic. I’ve actually lost a bit of weight. My clothes still fit just fine. I wear mostly the same things each day, and I’m quite tall, so a gift of clothes is not what I’m looking for.
Getting past 50 is tough enough
After trying it Big Pharma’s way in my 20’s and 30’s, which left me fat, sick, and quite nearly dead many times, I studied up on Traditional Chinese Medicine and proper Nutrition Science. I then applied the knowledge of a Clinical Nutritionist with alchemical precision to my own body. When I began, I was on 11 different meds. Now, I’m on none.
Someone like me, non-verbal autisitic, adhd, BP1, GAD, panic attacks, alexithymic, histamine intolerant, and having erythromelalgia, does’t usually live this long because the various meds people generally take to manage one or more of these conditions often interact in rather not so nice ways. Accidental overdoses, adverse reactions, and the like, are common. I’ve had them. I’ve been hospitalized more than I care to think about. Ambulance rides are no fun when you’re prone to anxiety and panic. Thankfully, I guess, I have insurance. So at least this life hasn’t bankrupted me like it has so many others in America.
I’m also at that age when Big Medicine wants to start doing “old people” stuff to you. Ever since I took my first Advil in 1989, I’ve suffered from GI problems and bleeding. Then, I almost bled out. When I was hospitalized, the doctors noted that GI bleeds were / are a known side effect of Advil, so don’t ever take it again was the guidance. Since then, I’ve had 3 colonoscopies, 2 endoscopies, and several radiological studies to get the bottom of the bleeding. Nothing’s ever been solved. Because the known side effects are listed on the packaging, Pfizer is off the hook for the life-long problems their NSAID caused.
Another thing I found out the hard way is that my system doesn’t like anesthesia. When I’m going in / out of anesthesia, I get panic attacks. I found this out during my first surgery, a tonsillectomy, at 25. Apparently, given my large size, the doctors didn’t give me enough drugs to keep me properly sedated and I began to wake up on the table, and have a panic attack. It also seems that they didn’t properly strap me down to the table, so as my body thrashed around, and my leg fell off the table, I ended up injuring a nurse. They slammed me full of sedatives at that point, but the startled doctor with the knife sliced a bit too much off inside of my throat, permanently changing my voice in the process. Later, in the recovery room, another panic attack and another mega-dose of demerol.
I reflect upon this as the system found blood in my latest colon screen. Of course they did. I have regular bleeding. But, of course, they “suspect cancer” because I’m over 50 and the test came back positive. They don’t want to examine my file, my history of GI bleeding. No. They want me to endure yet another colonoscopy. When I bring up my history, and the fact that I can’t afford to miss another week of work around such exploratory nonsense, they respond with the typical system-protecting, “so, you’re refusing services?”
A life well lived
I’ve lived a life that has taken me across three continents. I’ve lived and worked across the US, Canada, Germany, and South Africa. I’ve engaged with students from over 40 countries.
There’s an old Scottish saying that goes like this, paraphrasing: “All men die. But not all truly men live until they throw the weights, toss the stones and hammers, and the caber.” Well, I’ve truly lived … and conquered.
Along the way, I’ve more than abused this meat suit that I’ve been assigned.
Things are falling apart
Thanks to erythromelalgia, I’m in constant pain. Thanks to the Pfizer COVID jab, that pain is much worse since getting double jabbed and boosted as a condition of employment - even though my chronic illness profile advised against it. Now, I believe I know what changed and why (link). Nevertheless, things are getting worse as I continue to decline in health. I am, after all, well past my “sell-by date.”
I wonder how I’ll manage as a teacher in a dense urban classroom with mobility aids. I’m not accommodated now, even with all of the appropriate forms. So what then?
As the US Empire goes into its death spiral, I’m wondering what retirement and disability looks like in very-late-stage capitalism. I’ve been exploring leaving, but most countries don’t want to admit old disabled people - we cost too much.
What’s Next?
I’ve been pondering the idea of legacy. As much as I struggle with language (these posts take a few days to prepare), I’ve wanted to write books. My last one, No Place for Autism?, was a long time coming. I had to find the right context and publisher to get it out there. I’m glad I waited. Now, I’ve teamed up with the same publisher for my latest book - Holistic Language Instruction - which explores how to teach language to all students in the room (I know, funny). There’s no reason, in today’s times, where people like me should continue to graduate high school functionally illiterate. So, I’m exploring that from my own experience and the research that is hiding in plain sight.
Who knows, in the end, where this will all add up. It’s been a long strange trip.