putthesunback asked: Hi, I was reading what you've written about your ToF and it interested me because I don't often find other people with CHD on here. I have coarctation of the aorta, I was born with a narrowing of the aorta which I've had 3 surgeries to try and sort out but it can't ever be properly fixed. I was wondering if you'd ever had any nasty reactions from people to your surgery scars or if you've ever felt insecure about them, and how you dealt with it? It's a bit of an issue for me...
Wow this has been languishing in my askbox for ages, sorry!!! I have been attempting to formulate a comprehensible reply for a while now. Thanks for asking this.
I’ve never had anyone say anything outright awful to me. I’ve had people stare, for sure, and I’ve had people ask intrusive and inappropriate questions. When those things happen, there’s a lot of pressure to be accomodating and just answer the question or put up with it. if you’re socialized as a girl, you’re socialized to make nice and heaven forbid you should ever make someone feel uncomfortable. And as cardiac survivors, we grew up in an environment where intrusive personal questions from strangers were a normal feature of our life—think of all the doctors and nurses you’ve ever had to explain things to. So it becomes really hard to draw boundaries around this stuff, because our normal as women and as cardiac survivors is a bit out of whack. But! You don’t ever ever have to put up with other people’s intrusive looking or questioning if you don’t want to. You do not actually owe people an answer around this. If it makes you feel uncomfortable, shut that shit down. It’s really important to remember that you are not the one making it awkward. The other person made things awkward when they asked a really private personal question (i.e. were rude and an asshole). You don’t have to put up with that shit, and asserting your boundaries doesn’t make you a bitch. So punch back. If someone stares at me, I meet their eyes. If they’re really being obvious about it, I sneer at them. If I get an intrusive personal question, I let it hang in the air for a second. I let it get awkward; I let the other person begin to feel weird. Then I just say, “I don’t feel like talking about that right now.” The degree of disdain with which I say it is proportional to how rude the other person has been.
It took me a long time to learn how to do this. I am very open with my scars—I never covered them when I was younger, and I see no reason to start hiding my cleavage now. But not wanting to deal with it is okay too! You shouldn’t HAVE to deal with other people’s crap around your body, but the fact of the matter is, people are often gross. It can be a huge emotional load to carry, especially if you’re just learning how to assert yourself around this, and I can totally understand wanting a break. Invest in (or make!) some pretty scarves, so you can cover your scars or not as the mood suits you. Do what you’re comfortable with and experiment. Make it yours.
The people who are going to say awful nasty things are juvenile assholes. Treat them in much the same way as the awkward questions people, but with more disdain. You don’t owe them shit. Keep this in mind: you’ve survived three surgeries. What the fuck do these dickbags think they can do to you? Motherfucker, please. I’ve had my chest cut open. Trust your own survival. Trust your strength.
As for being insecure—of course. My insecurity in my body goes up when my health takes a downturn. I deal with my insecurity by developing resistance to the people and things that tell me I’m not perfect enough. I try to remember my own capacity for survival, and I begin to find beauty in the signs of that survival. Scarred bodies are bodies that persist (and resist), and that’s pretty fucking amazing.
had some cardiology today; annual appointment biz, you know. my doctor thinks I’m psychosomatic. he did some bloodwork and scheduled an exercise test, but kept returning to “yes, but how is your stress?” he’s an old gruff swiss german man and he’s really good at making me feel kind of hypochondriac and irrational. bad patient, no cookie.
the good news is all my clinical functions are stable, which is nice. the bad news is that I still have no idea why I feel the way I do and the one person why was supposed to figure it out is shrugging at me.
i need a nap.
I’m symptomatic again. Worse than it has been in a while, and more recurrent. Can’t tell if it’s building to something or is an anomaly. I’m 23 years old, and I still can’t read my body’s signs worth a damn. All will be interpreted for me in two weeks, when I have my annual checkup.
For now I am listening and being tired. I don’t mind that. I mind the brainfog quite a bit; my sentences, usually elliptical, become almost morse code in their rhythm. I mind being excavated from bed; I mind the expectations that I should cope in a manner most amenable to others. I would like to lie in bed and read and sleep and try to be patient with my thoughts. The rest of the world runs too fast these days, and trying to keep up leaves me short of breath.
I’m supposed to teach tomorrow, but I don’t think that’s going to happen. Getting enough words and breath to speak for an hour seems wildly, fantastically impossible. I am going to obstinately lie in bed and play the swooning maiden with a scowl.
Hey I’ve been reading you the past few days, your blog is awesome.
My question is pretty serious. I have a congenital heart disease, it’s very painful but I can muddle through it usually. I went to see my cardiologist last Friday. Me and my girl are high school sweethearts we have been together six years. The cardiologist says I have a year max my heart Is basically wearing Itself out. I haven’t told her yet. How do you think I could possibly bring It up? “Bed Relations” are also very painful. Though I put up with it for her, but it’s gotten worse. Should I continue to put up with it? And should we even stay together? I want to but I also think it would be foolish to keep this going if there isn’t a whole lot of potential in us going any where. What are your thoughts.
Wow. That must be so hard for you :( How come you can’t get a transplant or something? Can’t anything help you? :(
About your question though, I think you definitely need to tell her. I mean I’m sure she’s been there for you for the last 6 years, for everything and I’m sure she’d want to know what was going on with you.. she knows about your disease right? As for how to bring it up, I think that the only way to bring it up is to straight out say it. You cant beat around the bush with this kind of thing, you just have to spit it out. I’d say maybe after you finish a nice meal together, or are watching a show together on the couch or something, just stop her from what she’s doing, touch her hand and tell her there’s something you need to talk to her about.. and just tell her what you’ve told me. Before you do that though, you need to think about whether you want to continue the relationship, and if you do, then you should tell her “I love you and I want to continue our relationship, but I also want you to be happy and I don’t want to hurt you so if you don’t see this progressing anywhere, and you think we should end the relationship then I want you to just be honest with me.” Just tell her everything you’re feeling. You should probably also mention the problems you have with being intimate and the kind of pain it causes you.. maybe you can just do something a little less strenuous together that doesn’t put as much pressure on your heart. I think that if you love her, you should stay with her, but also, if she doesn’t want to be with you, you should let her go. If she loves you, she will be by your side every step of the way and not run at the first sign of hardship. I’m just trying to think of what I would want my boyfriend to say to me if he were ever in a situation like this and I would just want him to be honest, and show me his true feelings. If he was terrified or accepting or just whatever. Another good thing to do is to try to reverse the roles and think about how you would want to be told if your girlfriend was the one with the disease.
I’m so sorry that this is happening to you. I can’t even imagine what you must be going through. I hope that you can prove the doctors wrong and live for much longer than a year - doctors have been wrong before! My thoughts are with you and I wish you all the best with everything. Feel free to contact me any time you wish. xx
HOLY FUCKING SHITBALLS. What the fucking fuck is wrong with the medical system that EMINENTLY TREATABLE CONDITIONS are left unattended to the point that doctors tell high school kids that they only have a year left. What the everloving fuck.
I have no idea if you’ll ever come across this, but anon I encourage you to contact me! You should be seeing a cardiologist who specializes in pediatric congenital cardiology; at the very least your cardiologist, if they are not a specialist, should be making regular phone calls to a pediatric congenital specialist. There are treatment options. Lots of them kind of suck, but they are preferable to congestive heart failure. WHICH IS NOT A NECESSARY OUTCOME OH MY GOD. Probably you are american, and maybe have insurance problems so money is likely an issue, but there are resources to help you out. It’s massively unjust that you need to work to find them and work to get good care, but the medicine exists to keep you both alive and better functioning than your current doctor has led you to believe. I strongly, strongly encourage you to take control of your care however you can, because you deserve proper treatment and you deserve to live.
Also! You don’t need to “put up with” painful sex just to keep your partner happy. There are so so many ways to be sexual and intimate together that don’t involve pain for you. A good partner does not want you to hurt yourself in order to keep them happy—that is the very basic standard for human decency in relationships. So talk to her about it; I bet she’ll be very willing to experiment and find things that work for both of you.
today is my two year surgery anniversary!
hanging out in my pjs drinking coffee with baileys in it, feeling pretty grateful for stuff. fuck yeah socialized medicine!! my scar is still a bit pink in places, and a little keloided in the middle, though only barely by now. I think it’s badass either way.
flapjacket-deactivated20130204 asked: I'll start off saying that you are beautiful! My momma is a cardiac nurse, and she's working with a brilliant little boy named Emmett right now. Are you ever getting a transplant? Have you ever used the Berlin Heart? I'm just curious. And you also have a brilliant taste in music, I must say.
Thank you! That is very kind of you to say.
I have never used an artificial heart, nor have I ever been a candidate for transplantation. Transplantation is considered in patients with my condition when they are in heart failure that is so severe it is unlikely the patient’s heart will recover, and/or when the malformations causing the decline in heart function are complex enough to be inoperable.
I did, however, have a valve transplant. My major surgery at 18 months included taking out the pulmonary valve I was born with and replacing it with a donor valve. My new valve, which I got two years ago, is porcine (pig tissue).
I get asked about transplantation a fair bit actually, which is funny to me because it’s never once in my life been mentioned to me by a doctor in the context of my care. It’s not really a common treatment for my condition. But the two heart surgeries people know about are bypass and transplantation. But the reality of heart disease, especially congenital heart disease, is a lot more complicated, and includes a common toolbox of medical procedures and surgeries that most people haven’t heard of. The heart is an incredibly complex organ, and there are a lot more ways to treat it than most people realize.
byebyedollface asked: I just discovered your blog today, and I love it. I see a lot of myself in you. I, too, had open heart surgery and it sucked. I re blogged a photoset of you with those sticky things on/around your chest. It brought back memories of trying to get that adhesive off my skin. It was annoying as fuck (excuse my language). How has your experience with this shaped who you are? It did a lot for me, and it's nice to know someone who is going through a similar enough situation to where I can discuss it.
Thanks! I’m glad you like the blog and that my pictures resonated with you! I’m sorry to hear about your surgery—OHS is pretty rough going, psychologically speaking. Protip on the adhesive though: baby oil and a washcloth will take the residue right off. Should you ever be faced with stubborn electrodes again.
As for how it’s shaped who I am—that’s a difficult question, since my illness is embedded so deeply in my life. I’ve had it since birth, so even identifying that my experience is different from most people’s was a huge step. So there’s a sense in which doing a cause and effect thing is facetious; and equally facetious is an attempt to isolate areas of my life and say that my illness hasn’t influenced them.
That said, I can speak easily about what it means to me and the relationship I have with my illness and my illness experiences. I am deeply aware of my own mortality and my limitations, as well as my own capacities. I know my own strength. I understand intimately the tension between necessity and desire—that sometimes you don’t get to chose things, that your will is smaller than the world, and that maintaining identity in those situations is a matter of attitude and perspective rather than action.
I’ve never been able to chose the medical things that have been done to my body; though I consented, in technical terms, to my most recent surgery, it was a “surgery or death” situation. Hardly a meaningful choice. I submitted to it because I wanted to stay alive. And much of my surgery experience was just about staying alive, about making it through by whatever means necessary. But six months later when the dust settled and I felt safe again, I got a tattoo to commemorate the experience. That choice became a proxy for the earlier choice I was unable to make; I chose to integrate my experience into my sense of self and into my body and how to do it.
It really fucks up your sense of bodily safety and autonomy. In many ways that safety is an illusion (you could be hit by a bus tomorrow) but it’s also one of those psychological tricks we humans need to keep going, I think. For me, some of the biggest coping skills I needed to learn were the ability to identify the things that make me feel unsafe or violated, and to consciously enact my bodily autonomy. So, for example: I learned that strangers touching me makes me feel really anxious and dissociated; that exercise, which normally makes me really anxious, feels okay and even good if I do it in an environment over which I have a lot of control; that having the scar on my side touched feels really icky, no matter how light the contact. So I am now really good about setting and paying attention to these kinds of boundaries, and I am awesome at saying no. I enact my bodily autonomy in big visible ways by getting tattooed and by being very particular about how I present in the world. This is why femme is so important to me: it’s about enacting and owning vulnerability. I also do it in more internal ways, by making an effort to pay attention to my body’s cues and cravings. I needed to learn how to build a sense of physical security for myself and set strong boundaries around my body.
To circle back around to your original question: I think the way it’s shaped me, more than anything else, is that it has formed my ability to reach into my own seething mass of anxiety, vulnerability, and fear and let it talk to me.