Sick (5 page)

Even after five years of living with this, I still have those feelings of despair of fear of death, and it is so hard to keep my head up when the feeling falls over me. I have small memories of what I used to be like, but I can hardly remember anymore who that was. This is me now, and it's hard, but at the same time it's hard not to want to keep fighting and making your time the best possible. There's really no other choice. I believe that strength to survive is in all of us.

I was once young and healthy, too. It was the best. Now that I am what I am, I hate to think of what I could have done to maybe make life a little easier now. Isn't it always a case of “if I knew then what I know now?” My hopes from writing this are that maybe one person reading will really, truly hear and understand.

Some illnesses can be prevented or minimized with early detection. Most of us don't have health insurance, but sometimes something as simple as a blood test can catch a problem before you see any signs or symptoms. And it should be mandatory to learn about your family's health history. If you know something runs in your family, get checked for it. Instead of saving up for records or tattoos, get a physical. Splurge on your health. Not as fun, but more significant, and you only need one a year to be safe. Of course when you're young, health never seems important until you get sick, but it's never too late to start caring. It happened to me. It can happen to you. It's happened to a lot of us already. Have fun, be free, be happy, but also take care. We are not as invincible as we think.

As a person living with degenerative disc disease (DDD), scoliosis, and supraventricular tachycardia (SVT), my curvatures, arrhythmias, and disintegrations have been mapped out, illuminated, diagnosed, and cemented in both my medical records and self-identity. While I've been living with scoliosis and SVT (a heart rhythm disorder caused by an extra electrical pathway in my heart, like a short circuit) ever since I was in grade school, an acute episode of sudden excruciating back pain in January of 2007 that left me unable to stand or sit up for days catapulted me into the world of constantly navigating the medical system and living with chronic pain and spinal instability. While these physical problems have increasingly become more salient features of my identity over the past couple of years, because my illnesses/disabilities are invisible and my body appears to be healthy and able (most of the time), I struggle with negotiating the practice of self-identification. Since I don't fit into the prototypical mold of what disability has been constructed to mean in this culture and because I can “pass” as an able bodied person, I often feel unworthy identifying as dis/abled.

Furthermore, degenerative disc disease is a misnomer. DDD isn't actually a disease; it is a condition in which the jelly-like, fluid-filled discs in between the vertebrae break down. It is even seen as a normal repercussion of aging, a type of “ordinary” disability. Yet, diagnosed at 18, the DDD eating away at my spine can be seen as quite the oddity. I am always the youngest person in my orthopedist's waiting room, and the disbelieving chorus of “But you're too
young!”
haunts my medical visits and experience of living with DDD. My prematurely geriatric spine acts as a harbinger of the processes that constrain and plague the body as it ages. Seen as ordinary among the elderly, degenerative disc disease functions as an extraordinary anomaly among the young.

My body consequently embodies the lurking threat of illness and disability that is so feared in our culture. In a culture that attempts to obsessively control our bodies, ill and dis/abled bodies represent an unruly deviation from the norm. Our ill and dis/abled bodies are literal embodiments of our culture's insecurity regarding the mortality and imperfectness of the human body, and are therefore hidden and rendered “private” matters. Ill and dis/abled bodies also disturb the western and capitalistic value of the self-sufficient, autonomous, productive body, and are therefore relegated to the margins of society, our inhabited transgressions smothered and stigmatized.
I feel as if I occupy a liminal space along the continuum of ability and well/illness. While my body appears to be able and healthy, living with my multiple diagnoses has required constant negotiation and treatment. Due to their invisibility, it's hard for me to feel validated about the extent to which my chronic back pain and lurking threat of an SVT episode, during which my heart rate skyrockets up to 250 beats a minute and my chest becomes so tight I need to sit down, have changed my life and self-identity. Nowadays, even the most mundane routines (such as grocery shopping and sitting through class) are undertaken with a vigilant self-consciousness. I have become increasingly aware of how our society and its structures are constructed according to a bodily norm (healthy, young, non-disabled, male) that most of us don't, or will not, fit into at some point in our lives. Straddling both sides of the ability/wellness continuum, I now operate from a standpoint that allows me to see a wide spectrum of ability. I was forced to acknowledge how fleeting ability and good health can be, and therefore how dangerous disability and illness are perceived by a culture that seeks to discipline and contain the body and all of its unruly messes, dysfunction, and decline.

The experience of illness and/or disability can be likened to a body of water most of us will be submerged within, either as the sick or the caretaker, at one point or another. As Wendell writes in her work,
The Rejected Body,
“Unless we die suddenly, we are all disabled eventually.” Some of us are only temporarily dunked into the depths, while others will bob among the crests and troughs for our entire lives. Either way, the majority of us end up wet eventually. This impending shared experience can be used as a point of departure for temporarily abled bodied people to work towards a more viable solidarity with sick/dis/abled people. As Wendell also notes “Realizing that aging is disabling helps non-disabled people to see that people with disabilities are not ‘Other,' that they are really themselves at a later time.”

When able-bodied/well people acknowledge their own tenuous grip on the states of health and temporary ability, those struggling to keep their heads above water won't have to struggle so hard to keep afloat. Recognizing our shared commonality is crucial in order to bear witness to each other, to craft communities that are accountable to all of our different abilities. People living with illness and dis/ability need spaces in which our voices can be heard and our bodies recognized. We need spaces in which our complicated narratives can be shared, validated, and heard. In our social justice and radical struggles, abilities related to health and the body must be taken into account just as much as race, class, sex, gender, sexuality, and nation in the fight against multiple systems of domination.

My dad battled chronic Hepatitis C for five years. He wrote the following letter three months before his first coma that sent him in and out of hospitals for six months, eventually leading up to his final breath.

At the time he sent this letter-May of 2004- to us, he was relatively fine; but what does a word like ‘fine' mean four years into a chronic condition like cirrhosis of the liver? His body began deteriorating shortly after his diagnosis and attempt of treatment in 1999. He could not stay on the treatment, as his illness was far too advanced, and his body could not handle the medication in such a way that would allow him to deal with his life. Chronic illness is expensive. With such great insurance and supportive, understanding employment, he continued working and quit the treatments. The first apparent physical deterioration began in November of 2000. His teeth slowly fell out, a side effect of his interferon treatments. So began his body's steady decline. Then the HCV began its course. Nothing prepared me for the more permanent, physical ways his disease would act on his body. When he lost his teeth, he just got dentures. But there were symptoms that could not be easily covered up in this way. Shortly after his teeth, his belly expanded and hardened, as fluid accumulated in his abdomen. The lean man I had known for eighteen years of my life was forever altered. By 2003 his lower legs swelled, turned purplish, and developed open sores from a kind of diabetes that comes with liver disease. These developments in his illness were always horrifying at first, and then with time it just seemed normal, like it had always been that way. He continued to drive to work each day, drive home each day, nap each day, and live with it all each day. Austin Against War was a local activist group he participated in, proudly displaying his signs in the yard. Some weekends my dad would pack sandwiches for like-minded, fellow members from that group, as they set out to rally at local Wal-Marts, handing out information about how the community was being negatively impacted by a myriad of issues. You could also find him buying nose spray and hard candies at Wal-Mart. My dad was funny that way, set in his ways, but also always wanting to fight the good fight, or help anyone in need.

Hepatitis C, commonly referred to as HCV, is spread by blood-to-blood contact. Once infected, 15-40% of people clear the virus from their system. The remaining 60-85% go on to develop chronic HCV (more than six months of infection) that usually leads to cirrhosis of the liver and liver cancer. Most people progress to cirrhosis within twenty-thirty years, often with few to no symptoms before then. Most symptoms do not become prevalent until there is significant scarring of the liver. Testing went into effect in 1992, and finding HCV early, before much scarring, usually leads to a much better interaction with the drugs available for treatment. Chronic HCV can lead to swollen abdomen along with abdominal pain from fluid retention, bone pain, jaundice, enlarged veins, extreme fatigue, nausea, depression, cognitive changes, flu-like symptoms, inflammation of the kidneys, diabetes, and on and on. It is a chronic illness, and the pain is ongoing.

Even though my dad continued living his life much like before his diagnosis, these symptoms inflicted him day to day, whether we thought about it or not. Luckier than some, he had a supportive doctor who helped him manage his pain and depression. My mom was very unsupportive of him, ashamed of his illness. While my sister and I were never short of love and support, I know it was deeply painful for him to not have a supportive partner during the final years. In many ways this letter was for her, and sadly she dismissed it, as she did with too much of his pain and suffering. Additionally, this letter was a way to express to his daughters that his pain was always present and I think he needed us to understand that at this time, to understand the constant battle he was in day in and day out. I think he just needed us not to forget this battle as we all went about our lives. In many ways, he could not go about his life, not like he did before. Each day was a struggle, at times, even each hour.

A LETTER TO FAMILY & FRIENDS WITHOUT HEPATITIS—THIS ONE TO FAMILY

Dear Precious Dysfunctional Family:

Having Hepatitis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about HCV and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand …These are the things that I would like to you to understand about me before you judge me…Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and work and my family and friends, and most of the time
I'd still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.” When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, “Oh, you're sounding better!” I am not sounding better. I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting “sitting,” “walking,” “thinking,” “being sociable,” and so on…it applies to everything. That's what Hepatitis does to you. Please understand that HCV is variable. It's quite possible (for me, it's common) that one day I am able to walk Sissy around the block, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, “But you did it before!” If you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that “getting out and doing things” does not make me feel better. Telling me that I need a treadmill, or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes…may frustrate me to tears, and is not correct…if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am supposed to do. Another statement that hurts is, “You just need to push yourself more, exercise harder…” Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, Hepatitis may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?!) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now—it can't be put off or forgotten just because I'm out for the day (or whatever).
Hepatitis does not forgive.