Below is a really powerful piece that Lauren Denitzio - who wrote "Radical Heart Support" in Sick - read at the recent reading at Bluestockings in August. Since there had been so many developments in Lauren's life since she wrote her piece for the zine, she wrote this update for the reading. Thanks Lauren for allowing the piece to be shared on the blog!
I was born with Marfan Syndrome which is a a connective tissue disorder. It caused severe scoliosis, or curvature of the spine, when I was a kid. I spent most of my childhood in a back brace, until I had it surgically corrected when I was eleven. I had to have a metal rod fused to a few vertebrae in my lower spine to hold my back in place. Since then, the only major medical issue has been a heart condition which put me at high risk for an aneurysm. It never caused many obvious symptoms and really just meant that I had to see a cardiologist every six months to make sure I was doing ok. There are other conditions associated with Marfan's that I'm also at risk for, but so far I've only been impacted by these two.
I've had Marfan Syndrome, a connective tissue disorder, my entire life and knew the risks associated with it, which included heart surgery. I wrote my contribution for Sick when my cardiologist presented me with the possibility of having to have open heart surgery, and I was trying to process that as someone who felt generally healthy, who wasn't particularly physically limited, in comparison to some of the other contributors. Six months after writing my contribution for the zine, this past June 30th, I had surgery to correct an ever weakening aorta (the main blood vessel and largest valve in your heart) which was threatening to tear. They'd be replacing my aorta with a synthetic material and leaving the actual valve in tact. This procedure was to avoid what could be a fatal emergency should my aorta be allowed to further stretch out and tear.
Aside from riding my bike a bit slower and not playing contact sports, I'd never notice anything was wrong. I've always made sure that I have health insurance and as much of a pain as that is, it's something I should be doing with or without a pre-existing condition. I had learned to work around my illness and take care of myself, but had never really needed help or support in a significant way. When my health decided to take a turn for the worse, it took every ounce of effort I had to figure out how I was going to get through it. I was told I'd be in the hospital for five or six days and be in recovery for four to six weeks before I felt back to my old self again. That doesn't seem so severe, but there's no way to tell someone open heart surgery isn't going to be that bad. Since then I've learned a lot about asking for help and different means of support.
The day I saw my surgeon and confirmed that I'd be having surgery, everything really did change. It was like I was in a car on a normal day, feeling fine, but able to see the accident that was about to happen, all the physical injuries that I was about to incur, and being unable to stop it. Every second of every day for a month. It was a very difficult time, but I tried to make the best of it. I had a lot of good days where I could put it out of my mind, and a lot days where I just couldn't. Facing the pain and fatigue and physical changes that were about to happen was incredibly depressing. I've realized that the emotional trauma of being a 25 year old in a cardiac ward full of patients two generations my senior, barely having the energy to stand up or walk, may have been worse than any physical pain I encountered. And now, after the fact, when I'm physically almost back to where I was before, I don't want to let those bad days affect the good ones I have now. But it doesn't always work that way.
As much as I'd like to go out and see my friends and have fun, there are still a lot of days when being around a large group of people makes me really uncomfortable. Trying to answer the question "how've you been?" in a way that's fair can be difficult because odds are I'm probably thinking "you have NO IDEA." But, if someone I consider a friend asks how I've been or what I've been doing, I find a way to tell them that I had surgery to correct my heart condition. That it sucked...a lot...but I'm going to be fine and they shouldn't worry. I could just as easily say that I was out of commission for a while, but depending on the situation, I don't think that's really being a friend. I want people to include me in their lives as well, and they're not going to do that if I don't do the same.
That's not to say that everyone with an illness should feel comfortable being open about their situation, but being afraid to tell friends what we need and what's been going on, is taking away the opportunity for mutual support and understanding. When someone close to me took the time to say that I didn't have to be strong all the time, that it was ok to be upset and to need help, it meant the world to me. Being reassured of that by the people I wanted to be there for me was very important in the time leading up to surgery.
I consider myself very lucky that most of my close friends, and even some I wasn't so close with, stepped up and wanted to make sure I was ok. They made a schedule to make sure that someone would be with me 24 hours a day for the first week or so after I came home. Not knowing how I'd be feeling or what I would need, it was a huge weight off my shoulders to know that whatever the case may be, people would be there with me. Friends took on the responsibility of letting people know when I was out of surgery, my progress in recovery and when I wanted to have people around visiting. Someone drove me to doctor appointments, picked up medicine, ran errands for me. Others went out and bought movies for me to watch, made me food, sent me books and mixtapes and cards. For most of these things, I never even had to ask.
These people saw me in the hospital, with more tubes coming out of me than I'd like to think about, in the worst physical condition I've ever been in as an adult. They have seen exactly what I've been through and have yet to let me down. I'd like to think that these signs of support are exactly what's supposed to happen. Not everyone is that lucky, and I'm incredibly thankful to have the support network that I do. They anticipated my needs to a surprising extent and realized that even the smallest gesture, even just a text message to ask how I'm feeling, is helpful in it's own way.
While there were a few people who disappointed me in terms of support, they were really the exception. It disappointed me to read a number of accounts in Sick where people didn't feel supported by their communities. Especially in radical or punk scenes, where I have generally felt very supported in that regard. I'm sure it's a different situation for those who have more obvious or long term symptoms and physical limitations. I'm thankful that the period of time where I was severely physically limited was only a month or so, and not years, or permanent. But I'd like to think that going through a health crisis has taught both myself and those close to me the ways to support others in the future, and for longer periods of time than my specific situation. It helped bring into practice certain expectations of our community that are usually only talked about.
Also, I don't want to discredit the role that my parents and other family members had in supporting me through a very difficult time, which is still ongoing. They've played an integral part in it, but as family members, they were more prepared to do so. Receiving support from so many people who were in no way obligated to take care of me was amazing and is something I'm almost glad to have gone through. It tests the promises we make to each other to be there and being able to see those in reality and feel that has sometimes seemed like a blessing. The network of people that supported me is now something that I'm a part of for them as well, and I couldn't be more proud.
