Neurodivergent (or neurodiverse, ND) is a buzzword these days. Basically, your brain works differently than a neurotypical (NT) person’s does. This could be for any number of reasons: ADHD, Autism, a learning or cognitive disability, a mood disorder, or pretty much anything else that makes your brain function in a way that isn’t normally expected. So outside of memes and comics on social media about the quirky hijinx of the ADHD brain, what does being neurodivergent really feel like? I can’t speak for everyone, but I can certainly tell you my story.
ADHD-E-F-G…
I’ll start off with the easy one: ADHD (Attention Deficit/Hyperactivity Disorder). I was a classic ADHD kid – inability to focus or get hyper-focused about one thing only to be distracted soon after. However, I was never treated or professionally diagnosed (as a kid). I was, however, professionally diagnosed in my 20s and put on medication that changed my world. Turns out school counselors had been recommending a diagnosis to my parents for years. Even though school could have been easier with Adderall, I’m glad they didn’t. Not only would it have been contributing to the epidemic of over-prescription that has made it so difficult for people who need it to obtain Adderall, but I’m also glad because Adderall is a hard-core drug and not being on it earlier allowed my brain to develop as much as it could before introducing external alterations.
While there was some bouncing off the walls involved, ADHD isn’t about just being hyperactive. It’s your brain that’s more hyperactive than anything. This leads to issues focusing because when should be thinking about your math homework, you’re also thinking of your math homework, that cool bug you saw, what you wanna be when you grow up, what level you’re gunna beat, that cool appliance in the kitchen you wanna use, and so on. And your parents saying “Just focus on the problem” doesn’t work as well as you think it should because it’s a task much easier said than done when you’re brain won’t allow you to. It’s compulsory. And that thinking follows you into adulthood when you have ADHD.
You don’t grow out of ADHD
Back in the day, the thing with ADHD was that “you grow out of it,” and that simply isn’t true. You never grow out of it but as you age, you learn how to set up fail safes. Strict scheduling, alarms, and compartmentalization. There is always this box in my brain I put all my extra thoughts that is shaking and ready to burst at any moment – and it often does. If I veer from my strict schedule, things don’t get done. I even have a strict bedtime as an adult and when I stray from it even once, it takes a lot of hard work and sleepless nights to get back on track. I struggle with this every minute of the day. And since I’m off my Adderall, it makes those issues that much harder to conquer. The bummer is, I don’t feel like I can really be myself because I have to keep myself on such a tight leash. And when I let the leash slack, something falls through the cracks.
Socially, I never end the same conversation I started. My fourth-grade teacher called it “bird-walking.” This is probably one of the more frustrating aspects of having ADHD. I tell depreciating jokes about it, but it genuinely bothers me when I can’t converse well. I want to talk to people about subjects, and I want everyone in the conversation to have equal input. But sometimes when I try to express a thought I can’t put it into words very well and end up verbally chasing the thought like a butterfly just out of my grasp. And most of the time, it eludes me and I’m left with an empty feeling after having dominated a conversation for 10 minutes going “And, um.” I absolutely hate this about myself.
I realize social media is getting fed up with ADHD-folks, professionally and self-diagnosed. Personally, I don’t talk about my own neurodiversity much. But I’ve always been somewhat private about my health and well-being (which is ironic, given this blog). I do want neurotypical people to realize that quirky comics, self-deprecating jokes, and talking about it non-stop are just ways people cope. They’re not bragging about their ADHD, they don’t think it makes them special… they’re trying to come to terms with something that causes hurdles in their life every single day you couldn’t possibly understand unless you also had ADHD. They’re owning it and it’s awesome. So just let them be, yeah? They’re not hurting anyone but they’re creating a supportive community for each other. You don’t have to understand it; and just because you don’t understand it, doesn’t give you the right to shit on it.
Prescription drug abuse and how it hurts everyone
Adderall is extremely abused. Which sucks for those of us who need it and use it responsibly. For every college student trying to study for a final by buying a prescription or suburban parents trying to make it all happen by taking their kids’ pills, there’s a person out there being marginalized who needs it to simply function. And every act of prescription abuse risks access for those who need it.
Seriously, stop taking pills you don’t need because you’re trying to recreate “Limitless” or in some cases, you just simply think they’re fun: you’re hurting people. You are contributing to an issue that spans many Schedule 1 drug issues and making it less available for people who actually benefit from that drug the way it was intended. You’re also hurting yourself. Schedule 1’s like Adderall are extremely addictive and shouldn’t be taken unless absolutely necessary. Adderall is an amphetamine, which is chemically related to methamphetamine (a powerful stimulant and primary ingredient of, well… meth). You may think that taking a few pills to pass a final isn’t hurting anyone, but it is. People who need Adderall (or other similar drugs) need it to be on the same level as a neurotypical person. So by taking it when you don’t need it, you’re cheating by creating an environment that can’t be consistently simulated without misusing drugs. That hurts your own future as well as puts others who don’t abuse drugs at an unfair disadvantage.
If you or someone you know is struggling with substance abuse, contact the Substance Abuse and Mental Health Services Administration (SAMHSA) hotline at 1-800-662-4357.
I’m in there somewhere: mentally caged
When I was 20, I started getting sick. No one knew why. I saw dozens of doctors and was even hospitalized a few times and still, no one knew why. When I was 21, the fever kicked in. For a year, I ran a constant fever (which could sometimes get up to 106°(F)/41°(C)) and threw up about three times a day. I got sicker and sicker while doctors shrugged their shoulders and did next to nothing while the pain got worse and worse. I could feel myself slipping away, mentally and physically. Finally, I collapsed and was once again rushed to the hospital. Apparently, no one thought to give me a CT scan until then which showed a 2-litre abscess (yes… 2-litres) in my right flank which had been incubating for over a year. And due to the pain, I was so doped up on painkillers to even notice the growing lump on my backside. I was in a coma for a week after that.
Fast-forward, I basically lived in the hospital for months and had tests and scans ran on me regularly. Two of them were MRIs (to this day, the sound of an MRI machine makes me anxious). I remember when the doctor came to my bedside to discuss the results of the first MRI. That’s when he told me I’d suffered some brain damage due to the prolonged fever.
How bad is the damage, doc?
The damage is mild compared to what people think brain damage is. When most people think of “brain damage,” they think of a post-accident motorcyclist who wasn’t wearing a helmet and will be a drooling mess for the rest of their life. But brain damage comes in many forms, from mild (like me) to extremely severe (like the aforementioned motorcyclist or MAGA Republicans). And the results range from cognitive impairment to complete cognitive dysfunction. But more people probably have brain damage than you realize — hell, most folks who played high school football are probably a bit touched. And depending on where the damage is located dictates the effects (such as Aaron Hernandez and his chronic traumatic encephalopathy (CTE), which is a huge epidemic amongst long-term American football players).
I’m not a neurologist, I don’t know the particulars and ins and outs of all types of brain damage or even the numbers. I just know me, and my brain, and how it’s affected me.
The old me is still in there somewhere
Growing up, I was never beautiful, but I was always funny and smart. I didn’t care about the physical scars I have because of this experience, but every day I have to live with my old self being caged up in my brain but unable to communicate. I know they’re there… because I remember the answers that used to come easily to me now slip away. When I see them in the cage, they mouth the words to me, sometimes I can tell they’re screaming them, but I can rarely hear them.
There have also been some not-so-invisible side effects. For example, what my partner calls it my “record skip.” It’s kind of like a severe stutter; when speaking, it’s not uncommon for me to get stuck on an entire word. For example, the sentence “What are we having for dinner tonight?” Simple, right? Well, if my “record skip” kicks in, this sentence could turn into, “What are we having-having-having-having-having-having-having-having-having…” Most of the time I have to stop the sentence entirely and switch out the word. So I would stop and gather myself for a moment and say, “What are we eating for dinner tonight?” If my partner knows what I was trying to say, he will help me with the sentence. This is frustrating and makes goals of teaching people about things like web accessibility an extremely daunting task — I fear I will embarrass myself or won’t be taken seriously because it’s difficult for me to talk properly (and tends to be more prevalent when I’m nervous).
There’s a negative stigma around brain damage due to public ignorance. I don’t talk to people about it because I fear it will be held against me. And I’m already underestimated as it is. But I have a full-time job in tech, I’m an excellent driver (never even had a ticket), and I run a household. I’m empathetic and completely capable of complex thoughts, I just struggle with executing those thoughts out loud and getting the pieces into the right place. This doesn’t make me less intelligent, it just means I have to try harder than most to express that intelligence while my own brain works against me. Just because I have severe neuropathy in my leg, doesn’t mean it doesn’t work at all – it just makes walking a little more difficult.
So why am I talking about neurodiversity?
My brain has been on my mind lately due to some knew treatments my doctor and I have been attempting. And since I don’t usually talk about this stuff, I decided this was a good outlet to share my own story with you. Maybe you needed to hear it, maybe you thought you were alone and now you know you aren’t. Maybe I feel better just finally putting this “thing” into words. Maybe I want to do my quiet part of shattering stigma and broadening awareness of what being neurodivergent actually means. Maybe I just had time to kill before work. But either way, it’s out there now.
Everyone has their own story to tell and how it has impacted their life, and the more we talk about it, the more we help end the cycle of ignorance that makes people scared of being anything other than “normal.” You don’t need to be scared of me, or scared of my condition – I’m proud of the things I’ve accomplished. Hell, I’ve probably accomplished a lot more than many neurotypical people. World history is filled with violence and condemnation against things people simply didn’t understand at the time. And just because it’s 2022 doesn’t make us any different. But as we normalize these things, talk about them, and make people realize the world doesn’t end simply because XYZ is among the living, they just become part of living. So while the idea of being neurodivergent is something Arthur Miller would write about now, by being honest about it we make it a living reality and not some sort of life-ending Boogeyman.
I hope I’m brave enough to talk about this out loud one day.