My Heart and Disability
Wherein I come to no conclusions and talk a lot about my heart condition.
In case you do not know me, I was born with a congenital heart defect (CHD, also known as congenital heart disease) these can range from really scary and serious, requiring multiple open heart surgeries, transplants, and medications to not as scary or serious—something that fixes itself a few years after birth.
I myself fall vaguely in the mid-range of scary and serious. I have had open heart surgery and three stents put in via catheterization (aka angioplasty). I go in for check-ups with a cardiologist every year. Because I am missing a pulmonary valve, it is likely (but not guaranteed) that I will need a homograph (cadaver) transplant later on in life. Serious, sure, but I am also currently on no medication because of my heart, able to run, jump, and bike (if only theoretically, currently, because of a recent leg injury). In short: I am extremely healthy, so to speak, for a kid with my condition.
And yet, due to the missing pulmonary artery, I have limited lung capacity. I can ran, jump, and bike, but I likely do it a lot slower than you. I get winded on stairs, sometimes, and I (sometimes to my health’s detriment) don’t always notice when my heart is racing, because it often is. I get chest pains. I get arrhythmic beats. I have a pretty intense heart murmur (you can hear it without a stethoscope).
Some of that would be fixable with more exercise. Some of that won’t change until (or if) I get a homograph. Some of it is permanent. All of it is ok. I am healthy and not in danger of any major issues from it, for the time being.
But I am also somewhat of an unknown entity, both medically and culturally. Medically, I am something new. Kids with CHD didn’t used to live that long or that healthy as that often until a bit before I was born. Part of the reason I am monitored so closely is because I am part of something unknown. The reason they can’t say for certain if or when I will need a transplant is because they don’t know. It hasn’t happened that much. It’s the reason I, as a 24 year old adult, will almost certainly always be seeing a pediatric cardiologist—because cardiologist who focus on adults just don’t know hat much about CHD.
On the other hand, it wasn’t until this year that I even knew that there were groups for people with CHD. That there was some community I could have been a part of. It’s strange, to grow up and realize you have missed out on something that big.
Would it have helped me cope better? I’m not sure. In some ways, I am fortunate that my little brother was also born with a CHD (that new thing? the surgery that undoubtedly saved my brothers life didn’t exist when I was born, two years before him). I also had someone to go to the cardiologist with. I always knew someone else with a chest scar. Heck, we even got stents at the same time. In some ways, my little brother and I were our own CHD and that was invaluable. If I felt freakish wearing a holter monitor to school, at least there was someone else who could understand.
At the same time, I do feel like I’ve missed out on something valuable. It’s not that my CHD affects my experiences on a day to day basis. But it has immensely impacted my life and who I am. I carry a sense of mortality around with me that I wouldn’t without it. I carry a sense of lose that I wouldn’t without it. I carry a sense of being different that I wouldn’t without it.
Take, for example, the trend of “anatomically correct” hearts on t-shirts, or as buttons, or whatever. That is not my ”anatomically correct” heart. My heart looks mostly like that, sure, except it also has parts missing. And a hole. And scar tissue. Is it less anatomical? Is it less correct?
Take, for example, the sound of a heartbeat. The most human, unifying thing in the world. The pleasant ba-dum ba-dum ba-dum that is everywhere, in songs and movies and TV shows. Mine sounds nothing like it. My heartbeat is more accurately described as “like a washing machine”. It makes wish-wish wish-wish wish-wish sound. It’s such a strong murmur that med students are brought in to listen and learn. That once, when I was concussed, it was hooked up to speakers.
Do things like that affect me daily? To they trigger me? It’s hard to say. There is certainly a lifetime of build-up on self-esteem issues. On issues of healthy and athleticism. On being apart. Would a support group have helped me? I don’t know.
Was it ableism for my parents to not look into it? I don’t know either. As invested as they are in me being healthy and normal, they are also supportive of the ways that I am not. They never pushed me into sports or were angry when I ran slowly. They never expected of me what couldn’t be expected. They’re always patient and happy to talk about this issues with me.
The truth is, I think they just had absolutely no idea the ways that this could affect their children. Because no one knew. Because most children like me were dead or very sick. They weren’t playing handball or tennis. They weren’t running around with their brothers. They were having help breathing. They were on medications. I think my parents were so happy—so grateful—that my brother and I are as alive and healthy as we are, they never thought that our version of alive and healthy might be a fundamentally different way of experiencing alive and healthy than theirs.
And that sometimes, it would have been nice to have people to talk to about that. That lack of foresight on their part has affected me. That, yes, ableism, has had harm.
The more I learn, the more I struggle with whether I could call myself disabled. I am, certainly, more conscious of being temporarily able-bodied than most people my age. I am, certainly, affected by issues that others are not. But I also move and act and interact with the world as TAB. Would having access to a CHD helped me conceive of myself as non-TAB, as a PWD? Would I have accepted and felt different about myself?
I can’t (and shouldn’t) hold on to the ways in which the past could have changed the present. But I’m not sure how I can move forward to a better conception of self without thinking about what I would have needed then—and trying to find it now.
