Sick (3 page)

“Well, no,” I reply. And somehow I stay on the phone for another minute, tell her I will come see her this week, and hang up. I walk out into the living room, and for a moment there is a stillness, like a calm before a storm, like I'm suspended in time, refusing to move forward with this new information. But then, it is upon me and I fall to the ground, the greatest falling down of my life. I am shattered. The glass that separated me from my father's existence is no longer there, and as I clutch my stomach and make painful, sobbing sounds, I am catapulted through memory and meaning. I relive my youth, except I am my father in the dialysis chair as my children crawl around unknowingly, I live in a house that is about to crack under the weight of my fragile mortality, I am in the hospital, I am in the hospital again, and again, and I am dead.

After exhausting myself for an hour I try to find composure so that I can call my parents and tell them that their daughter has a disease.

James Baldwin wrote, “Some people look at you like you've farted when you try to tell them the truth,” and I felt the weight of those words as I began to tell people about my diagnosis. It is a topic that stunk up the room with its magnitude and awkwardness. And in an attempt to clear the air, or open a window,
many people fell short of what I would call providing positive support. Perhaps because I'm young, because there are no outward symptoms, or just because I am a friend, I suddenly found myself defending the severity of my disease. I am told that I will be okay, that everyone will get sick at some point, and that everyone's going to need health insurance someday. I am reassured that there will be a cure: a thoughtless and meaningless word that resonates in my head like an empty promise.

And I feel powerless. Powerless to explain the complexities of my disease, the feelings that come with the complete and sudden change of my life's narrative, and the guilt I feel in holding onto the anger and fear that feels natural for me at this moment. I feel alone, backed up against the wall and pleading, “Wait, you don't understand.” Because how do I begin to describe living with PKD if I am not heard in the first place? How can I begin a discussion of illness if it is dismissed with reassurances before it's even begun?

Not everyone is going to be okay, this is a truth. Only when we accept this truth will we be able to discuss disease in a way that is constructive, helpful, and healing. And in this way, we will be able to expand the ways in which these conversations and interactions can be incorporated into our lives and learn to grow with the people that we wish to care about, instead of apart from them.

I could feel it again. I was sure of it, that sadly familiar twisting pain in my diaphragm, the crackling when I breathed in – both indications that my lungs were filling with fluid. My swollen ankles molded to the shape of my socks, getting ever tighter as the group I walked with headed to the cemetery to knock back a few beers. I kept walking, laughing, talking, my heart rate reaching highs near 170 beats per minute, my blood pressure low to the point of dizziness and nausea. I didn't say anything, breathing heavily to keep up, because I didn't want to ruin the mood. I thought they wouldn't understand, and I didn't want to lose friends by asking them to accommodate me and my secret: I was living with heart failure.

Born completely healthy, I remained that way until 11 years old, when I developed Idiopathic Dilated Cardiomyopathy. This is a relatively common condition in which the heart loses its ability to pump blood throughout the cardiovascular system, resulting in an enlarged heart and scrappily functioning body. This disease is usually caused by a virus that attacks the heart, but because my disease was diagnosed as “idiopathic” there was no answer to why it had happened to me. In vain I tried to decide what it was I had done that caused my own body to turn against me, while my parents planned the details of a funeral they were told to expect. Four weeks after my diagnosis, I went to the hospital for a surgery to transplant my old heart with a new one. The surgery went smoothly, and I was at home after only 2 weeks of recovery.

Part of living as a transplant recipient is that I have to take immunosuppressive drugs for my entire life. These drugs basically kill my immune system, making it incredibly easy for me to catch any nasty germs that might never bother a person with an immune system. The extreme side effects of my drugs are a constant reminder of my health. I get regular migraines, irregular periods, nausea, I have an incredibly high risk of cancer (I have to be screened at least once a year) and bone density loss makes my back and legs hurt.

It's important to note that my transplant was/is not a cure. It was/is a treatment. I was given a life expectancy of 7-10 years with a chance of survival past that point. For the past year, I've been sick again, the same symptoms of the disease that cost me my first heart. Now, at 21 years old, I am currently living on a kind of life support, a constant intravenous inotrope (a medicine that helps the heart pump more efficiently) that sits inconspicuously in a fanny pack I wear even to bed. As of November 21
^st
, I've been waiting 8 months for a second heart transplant. I am not allowed to be more than 2 hours from my hospital, and clocking in at 2 hours 20 minutes, my current hometown is pushing the limits of how far my rope stretches.

Although this all sounds pretty shitty, I definitely haven't let it stop me in my life. All through high school and into college I involved myself with activism and the punk community, becoming an integral part of several communities, being in bands, making friends, and having fun. In doing these things, I felt like I found a group of people I could belong to that would accept me for who I was, regardless of anything. I didn't ever really talk about my disability because it was something I could easily hide and keep to myself. Some of my friends knew I had a heart transplant years ago, but didn't really know anything about it, so assumed all was well.

Slowly but surely throughout these last 14 months I've lost a place in the community I once had so much faith in. My bandmates didn't understand the fact that I was physically incapable of screaming into a microphone. People I used to hang out with didn't understand why I couldn't ride my bike anymore to their houses or why it was impossible for me to walk anywhere. When I didn't show up to shows, because the venue was smoky or it hurt to stand for a long time, people started dismissing me. For a while I drove my car to do things, but the constant talk of how shitty I was for driving a car really got to me and so eventually I stopped doing even that.

It's been expressed before that I am suspected of utilizing my health problems as a convenience in social situations. People have implied I may be lying about my capabilities or limitations so I can avoid a walk, bike ride, or sexual encounter. I wish people could understand that I don't choose when my disability affects me, and how hurtful it is to not be trusted about such a personal issue.

In what can only be an honest effort to offer help to me, people can become overbearing. Why is it so difficult for me to follow a strict diet? What's so hard about resisting peer pressures? This room/place isn't
that
smoky. It can't be impossible to walk around the block. It would be much more productive if people would
ask
how they can provide support instead of taking it upon themselves to tell me what's in my best interest.

This isn't an uncommon scenario within disabled experience. In everyday life,
when adhering to common cultural norms and behaving within the confines of societal boundaries, disabled people find themselves disguising what ailments they can in order to seem more normal.

In my personal experience, this stands true even more steadfastly in the punk/DIY community. With strong opposition to driving cars, using modern medicine, adhering to common standards of hygiene and living a substance free life, the punk community is quick to ostracize anyone who doesn't live by these means. If a person is physically incapable of riding a bike or walking even a few blocks, which is true sometimes with my illness, they are ridiculed for driving a car instead. If someone has to practice good hygiene in order to avoid complications and infections, or cannot eat potentially harmful food from a dumpster they are immediately judged by that in social circles to mean they aren't as “punk” or “DIY.”

It's confusing to me that in a culture that is specifically designed to operate outside the norms of society, how there can be so many rules and guidelines to adhere to. And in a culture that adheres to rules and guidelines that separate people based on their physical abilities, how can a disabled person find allies and support?

Through this past year, my friends have certainly been weeded out from my acquaintances. I have found a core group of people to honestly support me and understand as best they can what I'm going through. Still, the punk community as a whole is not accommodating to people living with illnesses.

The simplest steps can be taken in our individual communities to be more inclusive, but able-bodied folks must realize their privilege before there can be an effort to make our playing grounds more equal. Think about typical activities in your communities and how your level of health determines your participation: Dumpster diving, putting up stencils, shows/venues, and emphasis on alternative means of transportation.The ability to run away if detected, to stand for long periods of time, to be resistant to viruses and disease, and to ride a bike or walk somewhere are all examples that require some level of physical ability and fitness. It's not that people with disabilities love using gas, are lazy, or are hypochondriacs-we want the same things, why else would we be involved in this community?

If there is a house/venue where people hang out all the time, why not make that house smoke-free? It's healthier for everyone, and makes that environment at least an option to people not able to breathe in secondhand smoke.

At community dinners, and in collective houses, people could label food as being dumpstered. This would help those who need to be more conscious about what they're eating know about potentially harmful bacteria.

When there is a show, be aware of the dynamic at the front of the room. Is there
an overly aggressive mosh pit going on? Observe the kind of people standing at the back of the room. Do people with illnesses/disabilities (or just people who don't want to be pushed to the floor) deserve to be in the back? Challenge the common thought that the only way to enjoy a show is to be violent.

Are you quick to judge a person based on the visibility of dirt/smell or lack thereof? Writing this seems silly, but it's true that in punk/DIY circles, if someone is clean or not visibly disheveled, there can be serious misconceptions abound. Think about how being dirty can mean being sick for someone with a lowered immune system. Be aware of your surroundings when you are sick with a cold/flu, let people know you are ill, so someone doesn't make the mistake of exposing themselves if they shouldn't.

Individually, think about your personal hygiene when having sex with an ill/disabled person (actually in general). Have you been tested recently? Do your fingernails have dirt under them? For someone with no immune system or who is on certain prescription drugs, simple S.T.I's or vaginal infections can easily become fatal.

What kind of words do you use without consideration about their meaning? Using “retarded” or “lame” as insults is just as disempowering to disabled people as using “pussy” or “cunt” as insults is to female anatomy and should be avoided the same.

How many people in your community are open about having disabilities or an illness? If there is no one, do you think it's because someone is afraid of coming out? Why or why not? What is your community doing to make these people feel welcome, equal, and included?

I live in a communal house with 8 roommates. Everyone I share my home with has been great about maintaining an open dialogue about what things could make me more comfortable/less likely to continue getting sick. For example, we had our ducts cleaned out this winter before turning on the heat because of the risk of mold exposure. Also, people label dumpstered foods in the fridge, thoroughly clean dishes, wash their hands after going to the bathroom/doing other stuff, and let me know if they are sick.