Growing up with an invisible disability
Not everybody who fits the description of “disabled” can be seen as such. If I can ask one thing of people moving forward, it would be that you tried to remember that. Please.
Growing up, my best friend had cerebral palsy. We were both in LD or Learning Disabled classes, though we always felt the urge to add that it, “wasn’t because we weren’t smart,” something that I now regret saying for obvious reasons. I would say, “I’m in it because I have a congenital heart defect and could have a problem that could take me out for a period of time.” What I meant was, emergency surgery might wipe me out for weeks at a time, but in reality, it was more than that. It wasn’t just that I might need some sort of surgery or hospitalization, my illness wasn’t some slinking denizen waiting in the bushes to take me out, it was a boulder strapped to my back day in and day out.
So, you’re probably asking yourself, “What do you have? What is your disability?” Well, frankly, it’s none of your goddamn business. I mean no offense, but I will tell you in as much detail as I can because the list of problems is long and complicated and even I don’t know how to explain them all. But I feel like it needs to be said, more than anything, that it’s none of your business what is “wrong with me”. A squadron of medical professionals and bureaucratic officials have deemed me a disabled person. Frankly, that’s all you really need to know, but I’m okay with sharing, so I will. But again, remember, if somebody tells you that they’re disabled, and you say, “what’s wrong with you?” you’re 100% an asshole.
Put as concisely as possible, I have Double Outlet Right Ventricle, which basically means that of the four chambers in my heart, I was born without a wall between the bottom two. Beyond that, I have something called Situs Inversus, which means that all of my internal organs are flipped, which is normally not a big deal — Catherine O’Hara and Enrique Iglesias both have it — but is when it’s paired with a heart defect it is. Thanks, nondenominational creator, you dickhole. Beyond that, I have a series of other heart-related ailments that are harder to explain, so I’ll use a single string of sentences from a newspaper article written about me when I was a kid to explain. The article was written in order to drum up support for an eventual surgery — though it’s hard looking back to say which one as I have had many surgeries over the years, as my chest and back are covered in various scars, some tiny, some large. A couple of small chest tube scars here and there, an open heart surgery scar across the middle of my chest, and a Fontan scar over my right shoulder blade trailing down into my pit.
*It’s worth noting that my actual first name is Chad. My middle name is Richard, and it’s the name I typically go by.
“The crux of the problem is that his heart isn’t strong enough to pump an adequate supply of oxygen into his blood. When he’s active, his blood has an oxygen level of about 77 percent. A healthy person would have at least 95 percent. When resting, Chad’s oxygen rate drops to a risky 50 to 70 percent. As Chad gets bigger, his heart gets weaker. His complexion becomes bluer because the oxygen level in his blood continually decreases. If the condition went untreated, Dr. Rosenthal says it could lead to physical underdevelopment and, eventually, poor intellectual development. The surgery scheduled for Jan. 15 won’t fix Chad’s heart. It may buy him some time, maybe five or 10 years, his mother says, by keeping his heart beating until he can have a heart transplant. Or, perhaps, until a new treatment is developed.”
The surgery in question was said to only last around ten years before I would possibly need a full heart transplant. If I had to guess, I would say that I was around three years old when that surgery took place. I am currently 36, something that has boggled my mind ever since, because though I suffer daily from lethargy and constantly have to weigh each task much like most persons with disability have to do — for those unfamiliar, I would look up spoon theory — I am moderately healthy, being able to exercise lightly, and don’t have blue lips or a pale face anymore, though it can come back from time to time. I still have low oxygen saturation, which affects my energy, though it’s closer to the high 80s, to 90% rather than 77%. It’s worth noting that a normal person rarely if ever dips below 95%. And though I definitely experience brain fog and sometimes have trouble paying attention (probably in part due to the meds I take, some of which affect my ability to maintain attention and cause added lethargy) I was a pretty good student in school and still am, after deciding in my 30s to go back to college.
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Still, I have to take medicines daily. Two pills, one taken twice daily, to keep my chest clear of fluid, one pill to control my heart muscle, one to control my heart rate, and baby aspirin to keep my blood thin and the system humming. On top of that, I suffer from things called SVTS (supraventricular tachycardia), cardiac events where my heart races at uncontrollable rates and sometimes drops to dangerous lows. They are terrifying and painful and usually are followed by depression and considerable fear of dying. This leads me to perhaps one of my biggest problems with my disability…my mental health.
When I was a child, I would experience SVTs weekly, sometimes daily, and I have vivid memories as a small, small child, having buckets of freezing cold water being dumped on my head by my mother while my siblings looked on in terror. Pair this with memories of spending a large majority of my childhood in and out of hospitals, often for extended stays — so much so that hospitals now feel homey to me — and you might have an idea as to the degree of existential dread I live with on a daily basis. Life is not safe for me, and it has taught me that it is not safe and that at any moment, whether I am about to drive home from work (where an SVT happened in a Chipotle parking lot), walking in the park on New Year’s Day (yep, another instance), watching the latest Planet of the Apes movie (yep, another one), doing the dishes (yep, yep, yep), or simply watching TV on my birthday (yeppers, another SVT) life has been an ever-present reminder that a painful, life-threatening instance can occur at any moment and that that instance can lead to cardiac arrest and death. One day I could be enjoying a nice walk with people I love, doing the dishes, heading home with a burrito bowl, or watching a movie at the cinema, and the next I could be…well, not here.
When I look at pictures of myself as a kid, the one above from the newspaper article, I see a towheaded kid who loved G.I. Joes and E.T., and who just wanted to nap all the goddamn time, even though napping felt like a waste of time. I think of how my siblings had to suffer through the worry and how I was once told that my older brother would cry himself to sleep afraid that something would happen to me. I see a kid mourning over a childhood that he barely ever got to have between blood draws and stress tests, between buckets of freezing water and violent chest pains that feel like knives swimming through his cardiovascular system. That kid was happy often, but he was sad so much more often than he should’ve been. When I watch videos of him he’s cranky and pale, lethargic and barely there, like a ghost haunting the edges of the frame. I have never stopped mourning that kid, nor the adult he grew into. How daily life feels like a flurry of activity between wanting to sit and rest, watch a TV show, or read a book because there’s only so much energy for a given day. That child spent his life imagining things, stuck in a far-off world, making a pact with himself to “always be playing something” because living, because existing, because being a part of reality was just too much, was just filled with doctors appointments and scary talk.
When explaining to people what it feels like to live with a disability, what it feels like to exist in a state of near-constant existential dread, I often use the “shitty car metaphor”, which I coined. In order to imagine it, one must first imagine they are in a shitty car. The windshield is cracked, tires wobble and bounce as you careen down the highway like a rider on a horse with a broken leg, the engine rattles and makes metal grinding noises, the AC doesn’t work, nor do the windows, and it is a blistering day, so you just have to sit in this sweatbox, dying slowly, and every once and awhile the car stutters as if it’s about to give up on you. It’s frightening, right? I think we’ve all been there before. We’ve all driven a car that’s past its time. Now, imagine you see a new, pristine car broken down on the side of the car. And somehow your rust bucket is still rolling. It’s bound to fill anybody with considerable fear that their car is ready to collapse under the weight of its shoddy structure at any moment, right? That’s what it feels like.
But there’s one last thing to remember about that kid. He was funny and sweet. He was so goddamn weird and he loved more than anything watching Dumb and Dumber and Clue and Tommy Boy with his sister. He wanted to be a famous comedian when he grew up and wanted to be on SNL. He loved drawing and later dreamed of being a cartoonist and once spent his first night in 6th-grade camp dreaming up an entire season of a cartoon adaptation of the Nintendo game Starfox because he was in an unfamiliar place and couldn’t sleep. When his dog died on his birthday, he mourned her for years and called his next dog by the same name, Missy. They were both beautiful black female labradors and the second one died in his arms as he whispered to her that he loved her and that it was okay before something left her eyes and she convulsed in his arms. He was good at school but hated math. He had a best friend who was a freckle-faced kid that his grandmother used to watch. When he was really little he wanted to be a “dinosaur digger upper” because he couldn’t say archeologist, nor remember the word, but one of the best nights of his life was when he ate at Pizza Hut after seeing Jurassic Park at the local cinema. In his teens he would grow to love making movies and telling stories and would write books and scripts, most of which he would lose or throw away, knowing that he wasn’t that good yet. He would beg his parents to play soccer with his younger brother until they finally relented, and it was hard and his chest would burn with iron-breath and he would still do it, even though he could never play. When his younger brother played football he would beg and beg and beg and somehow his parents relented, and he played even though it was harder and he never got to play because he didn’t have the energy, but he did it anyway, and though he never played he was very good in practice and his teammates would call him “Rudy”, like the movie. In 6th-grade he would get the “coaches’ award” simply for “his heart”, something even at that young age he found to be ironic, but still, he displayed his trophy with pride. He would befriend a kid with cerebral palsy because they were both in an LD class, and they would soon bond over their shared experiences. They would bond most over the reality that most people just didn’t understand what it was like, most people would say things like, “I understand,” even though they knew they didn’t. They would spend nights watching movies and driving to Frisch’s Big Boy at two in the morning because it was the only place open. That boy was so much more than his disability and he looked like everybody else, so he tried his best to be like everybody else.
The moral of the story is, there was joy. People who are struggling, whether it be with a disability or with any of the myriad struggles that exist out there aren’t your emotional pornography. You don’t get to look at our life and our troubles and think to yourself, “Wow, how brave.” No, we don’t want you to tell us we’re brave. We want you to treat us like human beings with problems and disadvantages. We want you to listen when we say, “I can’t,” because most likely we’ve pushed ourselves to the brink. Most likely, we wouldn’t be asking for help or support because for some of us, asking for help is a reminder of every way we’re incomplete. We don’t want your sympathy, we want you to FUCKING LISTEN. We want you to stop forcing us to perform to the same level as anybody else and to stop assuming we’re incapable. We will tell you when enough is enough, because saying that is painful, at least for me it is. Most of all, we want you to believe us when we say we need help because when we say it, we really mean it. We don’t need to be mocked or ignored.
In my adult life, I have had many bosses who have been kind and understanding, and I’ve had others who weren’t. I’m a hard worker, I grew up always helping out with chores both inside and out, as my body would let me. But I’ve also experienced bosses who’ve not believed me, forced me to explain my medical history, to provide documentation if I said anything about my medical condition. I’ve been harassed and disbelieved. Once, I even had to explain, when working at a Meijer in Bowling Green, Ohio (because FUCK THEM), my medical history to every single manager one by one, day after day, until I was so depressed, so beaten down, I would start crying with each new explanation until finally, I quit. The reason why they did this? Because I told them I couldn’t work on the truck after they moved me from the deli because I had a beard, and then after that, because I took too long pooping, which might’ve been the result of protein-losing enteropathy (something that happens to kids who have Fontans) or because I had my gallbladder removed, probably due to a lack of oxygenation and therefore it failed me sooner than it might have. Regardless, I mentioned that it might be caused by either of the above and then it became a situation, wherein I had to explain it to every manager to the point where the reason had sort of disappeared. And again, my bosses were mad at me because they hired me to work in the deli, told me to shave my beard, and moved me to the dock and when I told them I couldn’t do that because of my heart, it was because I had to shit too much.
So, all I ask is this. Try to remember that everybody’s got something, even if you can’t see it. Whether it be a disability, mental health issue, sexual identity, the way society treats them because of their religion or skin color, or the way that history has placed them in a position of disadvantage, everybody is dealing with something…so please, for the love of god, treat people with kindness, especially when they’re vulnerable, especially when they tell you they need help. It doesn’t take that much to just listen. Close your mouth, don’t roll your eyes, and tell them they’re being dramatic, just listen. Just shut up and listen.
