When explaining my illness and how it makes me feel, especially in regards to other people, I often use what I like to call the “My Car is a Piece of Crap” metaphor.
What I mean by that is: Imagine you’re traveling down the highway. Your wheels are flat, so the car wobbles. The engine is old and rusted and grinds as if it’s about to fall apart on you. The windows won’t roll down, and it’s hot out, so you just sit inside, sweating profusely. The muffler fell off, so it’s so loud you can’t even listen to music, if the radio even worked cause it’s a piece of crap, so of course it doesn’t. And, to top it all off, the windshield is cracked, so you have to stare through a small spot where you can see. In other words, you’re basically driving an old rusted can down the street.
Being a 33-year-old man who had to buy my own first car, an old Jeep that my brother and I had to each had to share because we could only buy it with our combined money, I can say that I’ve experienced driving the sort of above-described car and to say that driving it around, especially on the highway, can often be an exercise in controlled anxiety.
Probably most people wouldn’t feel that anxious with the above-described scenario, so imagine that you have to get somewhere. It’s imperative that you drive an hour or an hour and a half away in this rust bucket and you have to make it back. You have nobody you can call to bail you out and you have no money to pay for a tow. You’re on the very edge of everything falling apart and if your car falls apart on you then you’re gonna be walking home.
Is it making you sweat yet?
Now imagine that you see, on the side of the road, a new, shiny car pulled over, smoke pouring from the engine.
That’s what it feels like every time you drive your rusted, broken, awful body down the highway and pass by normal, healthy people who get sick and die.
You think to yourself: “How am I holding on when that person can’t?” “Is my body getting ready to fall apart on me?” you think as a ting of pain runs from your arm to your chest for the third time this week.
Now, if you’re still with me, I’d like to explain why I am nervous and why my body feels, in so many words, like a rusted, old car rolling down the highway with a cracked window.
Here is a quote from an article written about me in December of 1989. I had just turned three years old two months prior. Also, in case you’re confused, my real first name is Chad. I go by my middle name, Richard, because I sincerely dislike my first name.
“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 article goes on to say:
“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 article was written as an attempt to try and raise funds for heart surgery, one that was said to only last me about five to 10 years but has somehow lasted until now. I am currently 33 years old and in October I will be 34.
In the past five years or so I have had at least four SVTs; painful episodes in which my heart can race up to 300 beats per minute. I have to hold my breath to break them. When I was a child I was held upside down, had buckets of ice water tossed on my face, and was gagged, all in an attempt to trick my heart to restart. The entire experience makes it very, very hard to breathe, and it feels as if I’m being repeatedly stabbed in the heart by a knife. When it finally beats at a normal rate it feels as if a blade is being removed from my chest cavity.
During one of my most recent episodes, walking through the woods of John Bryant State Park on New Years Day, the temperature surely in the forties at least, I was caked in sweat due to the rate of speed at which my heart was beating. I removed my coat and sweater, sitting by myself in the woods as my girlfriend went to bring the car to a place closer to where we were so that I didn’t have to walk as far to get in. I walked a total of thirty yards to a place where my girlfriend could park the car. Because of the pain and shortness of breath, it took me nearly thirty minutes, the arrhythmia ultimately breaking once I got near the car.
Since the surgery in Jan. 1990 I have had so many surgeries it’s hard to get an accurate count. In my life, I have had at least two major heart surgeries, several heart catheterizations, a gall bladder removal, possibly due to a lack of oxygen, and a bevy of other surgeries, including surgery on both of my eyes for detached retinas I received after being taken out of anesthesia too soon during a heart cath in my senior year of high school.
I woke up from surgery but couldn’t see anything and could barely hear anything. It was like being a dream state, or as if I woke up at the bottom of a deep, dark well. I was later told that I woke up screaming and flailing around, cursing at nurses.
I mention all of this as a preamble to the point because, well, my car is busted. It’s been busted. And I have, in my short 33 years experienced my fair share of brushes with non-existence. In fact, at one point, while in the hospital as a child I was accidentally plugged into a machine, which sent a jolt of electricity through me, killing me for a period of time.
So, as COVID-related deaths climb and climb here in the States, and people with lung and heart diseases are purported to be the people at the most risk, I sit and wait, knowing that it’ll be months if not years before a vaccine is readily available for the public, as the quickest a vaccine has ever been produced was for mumps and that took four years.
To add to the anxiety, there has been consistent blowback by even the seemingly smallest of precautions, such as kids going to school from home and even more frustrating, people wearing masks, some people outright refusing.
So, as I sit at home, now for months on end, trying to occupy my mind with books, movies, TV shows, household chores, work and school, I try my best to not get on social media, as, to be honest, it has been one of the main stressors; watching friends and loved ones argue against mask orders, or against safety precautions, once even receiving messages from a distant family member about the dangers of vaccines. Something that feels like, at least for me, like a finish line of possible safety, the hope of a vaccine seeming like a final safety net, that might allow a compromised person like myself to join regular life.
I know for a lot of people this will come off as dramatic, or a smidge whiney, and maybe it is. But, I cannot stress enough how frightening this is. I have spent my fair share of time in hospital beds. I have had to sign waivers before surgeries I wasn’t one-hundred percent sure I was going to wake up from. I have sat in the woods, by myself, staring up at the leafless bones of trees, rattling back and forth, the cold of January washing over me, my heart racing as it feels like a rat is crawling through my chest, wondering, can my heart take much more of this? Can I take much more of this?
I hate to deride people for their lack of empathy because empathy is hard and often hard-earned. And we’re currently at a time, especially here in the States where it feels as if empathy is in short supply. At least sometimes it does. And frankly, to quote a famous line on understanding that the world is a lot bigger than you are, “the problems of (one) little (person) don’t amount to a hill of beans in this crazy world.”
It’s something to think about, for me, and maybe, at the risk of sounding harsh, for a lot of other people, too.