Sick (6 page)

If you want to suggest a cure to me, don't. It's not because I don't appreciate
the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with Hepatitis then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Hepatitis if something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.

In many ways I depend on you…people who are not sick – I need you to visit me when I am too sick to go out…Sometimes I need you to help me with shopping, cooking or cleaning (mowing, raking, or cleaning out flower beds would be nice…LOL). I may need you to take me to the doctor, or to the physical therapist (most likely pick me up… Ha!) I need you on a different level too…you're my link to the outside world…if you don't come visit me, then I might not get to see you…and, as much as it's possible, I need you to understand me. Take Care.

Peace & Love

Moi

Austin, TX

May, 2004

A DAUGHTER'S REFLECTION

My dad used to sign his emails and cards “Moi” as a funny, sentimental name. He was sarcastic, a jokester, but also had a very sentimental way about him, always finding unique and subtle ways to express his love and affection. After the letter, I felt an overwhelming sense of understanding and appreciation of his constant struggle to manage his pain, his depression, and to go on fighting. For a moment, I conceptualized what it might be like, this constant pain and suffering, and how one would learn to deal with that in order to go out into each day as they once did. This was coupled with rage toward my mom who would not express this understanding. Even those closest to someone suffering from a chronic illness can lose sight of their constant pain, as it is extremely difficult to care for someone through chronic illness, slowly spiraling into worse and more horrifying symptoms. My dad often spoke of people in his HCV support group who lost contact with family members due to their illness, and this was an ongoing fear
he harbored and often spoke about to me. Almost angry with him, I could not comprehend how he did not know that my love and support would always be with him. But I also know that much of this fear originated from the lack of support he received from my mom.

One complication of caring for a parent with a chronic illness is how you can interpret certain behaviors as selfish or too needy, because they are so consumed with their illness. At times, I remember feeling my dad was not interested in my day-to-day life, because he would express jealousy of the time I spent with friends, away from him. After the letter, I realized my dad did try and meet me in my life. Some days, on his way home from work, he would stop by for a short visit, rest a bit, talk a bit, and then be on his way. I love these small captures of time I carry with me. I realized these visits were a way for him to express his appreciation, his need and love for me. Going to Goodwill to shop for an old pair of Levis, catching a movie, coming over to take his dog on a walk, or coming over to sit and just be around were some ways I met him in his life. In many ways, my life was going on and his life was slowly ending, and this letter put that in perspective. He was not selfish, but scared. My sister and I continued to love and support him, to attempt to ease his and our fear. As for my dad, he went about his life as usual. I think he said his piece, and just wanted to remind us that he was in a struggle for his life, and it was a painful struggle. To someone on the outside, you may think how would you not be reminded that he was so sick with his swollen belly, legs, sores, fake teeth, fatigue. A person can get used to almost anything. In living your life, it is important for a caregiver to try and maintain some perspective on how a loved one is in constant pain and struggle. They need you to understand, to remember, to acknowledge their fight. As I read my dad's letter now, it seems to say, “Don't forget this battle I have fought…it was for you, too, that I fought… don't forget me.”

I never forgot, and I never will. You were brave. Your fight was for you and for us.

In late 2008 I was diagnosed with Hypoglycemia after more than fifteen years of dealing with its symptoms: falling asleep without notice, being underweight, having trouble focusing, bad gas, ravenous hunger, joint pain, locked muscles, experiencing painful digestion, memory loss, long-term destruction of my thyroid and adrenal gland, brain damage, and eventually hitting the low where I really couldn't function on a day to day basis.

Hypoglycemia is basically your body not producing enough glucose for your blood. That's why it's called low blood sugar. This means that your body will sometimes send more blood into your brain to increase your glucose levels, which normally results in a migraine, or more commonly non-essential parts of the nervous system are shut down as your blood sugar drops, causing mood swings, personality changes, fatigue, circulatory changes, depression, wear on the thyroid, pituitary, and adrenal gland, anxiety, and in extreme cases eventually passing out or even death.

Decreased glucose to the brain flows less oxygen to important parts of your brain, which makes it hard to focus, perform basic functions, and in the long term causes neurotic behavior, personality changes, and even psychosis. Virtually all clinically psychotic people qualify as low blood sugar (what we don't know is if the chicken comes before the egg or vice versa).

Your endocrine system, particularly the adrenal gland, tries to pick up the slack but over many years wears out. This is the theory of why I fall asleep unpredictably and suddenly. My adrenal gland is worn out and cannot function when it is needed. My case is extreme enough that I need to eat foods that are high in fat and protein every hour or so and I need to categorically avoid sugars and carbs. So it's like the vegan Adkins diet in practice.

But everything I've described above hasn't been the worst part of it.

It's much harder to handle when your so-called progressive radical punk community doesn't know how to interact with you and your problems.

At the time of my low my partner was also experiencing her own physical problems and had withdrawn from communities that she was once very active in, in part because of her health.

With both of us being in pain and socially withdrawn, it allowed me to see how punk communities interact with sick people: by ignoring them.

There are and were many well-intentioned individuals who sincerely wanted to help but just didn't know what to do. I certainly give credit for effort but the whole experience just made me feel like there is yet another gaping hole in the way our “progressive” community is uneducated and not stepping up.

The problem is further compounded if you are undiagnosed or don't have a name for your combination of symptoms (read: “it's all in her head”). If there's one thing that you take from this, believe your peers when they tell you that they hurt or are sick. Visit them and hang out with them even when they are low functioning. I've seen this problem play out over and over. You get sick, you get forgotten.

So then the obvious conclusion is to listen to your friends and peers, believe them, and offer them the kind of support they are looking for. It's stupid to say things like “this is what you should do” or “have you considered that it's all in your head?” because, believe it or not, they have very likely researched it much more than you have and already worried heavily about the latter. They don't need to hear it from you, who just comes across as doubting. Sympathy (e.g. “that sucks” or “I'm sorry”) is a better place to start. Everybody is different too so talk to them and see what they need from you.

Even as I've gotten my diet and medication under control and have reassumed a more functional life, I still feel a bit left in the dust by my people. I grew up with very strong ideas about punk and its interconnected politics. It was the family that I wasn't raised with; the one that actually cared about my well-being. Certainly, I have failed it and taking care of the well-being of others at times, but this problem seemed more systemic. No volume of good intentions could solve this problem. It would require educational materials like this zine to really make people understand.

I confess: I was not always the best big sister. For starters, when my dad brought me to the hospital at age two I was initially filled with excitement. I chatted and giggled on our drive over, eager to see the new human being that was now my sibling. However, my excitement quickly faded and turned to disappointment as my dad pointed my brother out to me behind the glass wall. “That one? That is my baby brother??” I asked with some shock, “but I want the one with the red hair!”

A year or so later, in my three-year-old wisdom, I tried to give my brother away. I called the operator (having been told this is what you do when you have a problem) and explained that my brother really needed to go. This event was followed by many instances of pinching, scratching, and hair pulling throughout our years growing up. Not surprisingly, the more-often-than-not end result was my brother crying and me being punished. Of course, this only made me dislike him more, and led to future instances of pinching, scratching, biting and hair pulling.

In spite of all of this, as far back as I can remember, if there was any situation in which I could protect or stand up for my brother, I would. When the neighbor down the street who was probably a foot taller than me and a foot and a half taller than my brother was picking on him, I came to his defense, yelling at the bully to stop. “Who is going to make me?” he asked. “ME!!!” I yelled, “Because I am his big sister!!!” Whatever dislike I had towards him in our younger years passed as we grew, and he became one of my closest friends. The strong sense of needing to protect and support him in whatever situation I could has never faded.

Like other siblings close together in age, my brother and I developed a way of communicating with one another without words. As far back as I can remember glances we shared or faces we made to one another expressed our thoughts far better than words might have. I used to joke that my brother and I could even communicate telepathically and through our dreams.

When I got the news that my brother had cancer, the first thing I wanted to do was to put myself in his place. “Why him? It should be me instead.” It was incredibly painful to feel that there was no way that I could protect him from this illness and everything that accompanied it. From this point forward, I felt I was being served a daily cocktail I didn't order: guilt mixed with immense sadness and topped off with fear. Thinking about this unwanted cocktail it was only natural to consider the potent mixed drink forced on my brother. Of course, whatever amount of sadness and pain I felt, it could not compare to the emotions my brother was experiencing. I can only imagine what it feels like to go from being a completely healthy
26 year-old one day, and the next day learn you are going to have to spend an undetermined amount of time battling a life-threatening disease. Considering his emotions and seeing the strength he exhibited throughout his sickness helped me to cope with my feelings.

Throughout my brother's sickness I tried to consider the ways in which I could continue to serve as a source of strength or support to him, as I had been in the past. The most difficult part of this, for me, was living thousands of miles away from him and being weighed down by the burdens of a doctoral program with its never-ending demands. When I saw my brother, during the times he had major surgeries or was receiving chemo, I tried my best to be whatever he told me (or what I sensed) he needed me to be. I tried to tap into our ways of communicating that we always had, as brother and sister. If I thought he needed a laugh and some distraction, I would tell a funny story. If I could tell he needed a rest, I would take my parents out to lunch or go sit with them in the waiting room of the hospital. When he needed someone to run to the grocery store to buy him the fat-free foods he was required to eat following removal of the lymph nodes in this stomach, I came back with bags of items and brainstormed meals for him. When he came home from his second surgery and didn't have to be on a fat-free diet, I baked him several batches of cookies and we watched crappy TV together.

I also realized that there were things I could say to my brother that my parents wouldn't or couldn't. When I first saw him in the hospital I held in my tears for all of about 20 minutes and then I stated the obvious, “it sucks to see you here having to go through this.” When I began crying, our parents and my brother cried too, something that they had not yet done together. Our parents tried to be stoic, as positive as possible, and not be angry or upset around him; at that time, however, that approach had trapped the three of them into not sharing their fear and sadness. Afterwards, my parents and brother told me that my acknowledging the elephant in the room and voicing exactly what they had been feeling and had wanted to say (well, maybe not in my exact words), allowed us to come together as a family.

Coping with my brother's sickness was very much a learning process in changing family roles. Although always the big sister, with a desire to protect, I learned that support can be given in many different ways. Sometimes it is batches of cookies and bad television; sometimes it is saying the hard truth and sharing raw emotions. But support also manifests itself in acknowledging the mutuality of need that touches a family when confronted with illness. As much as I've tried to give support to my brother, in truth, he has been my greatest source of strength throughout this process. The way that he confronted and battled his sickness (and continues to do so), and adjusted to all the ups and downs of being ill with grace and courage has solidified for me what I have always known: my brother is a beautiful, amazing person and I am incredibly proud and thankful that I am his sister.