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Dedicated to Alan, who has CF
Death – something to take advantage of
San Diego — The last time I saw Allan, he was a broken man. Hooked up to machines that monitored his lifebeat; tubes pumping drugs in, needles taking blood out. His eyes were beyond bloodshot. Always slender, he had dropped some weight. His wiry frame had become a skeleton wrapped in skin.
I first met Allan on a computer bulletin board system. We'd traded e-mail for a while, discovered we shared many of the same interests and philosophies. He was very honest - he told me right away that he had cystic fibrosis. Things progressed quickly; we became fast friends. Soon, we had our first "date."
We were at my favorite restaurant. We sat down to our salads, and as I stuck my fork into a piece of lettuce, I heard a rattling sound. I looked up and saw him pop six or seven pills into his mouth. He told me that he probably wouldn't be able to digest his chow at all if he didn't take them each time he ate. CF is, after all, a disease of the digestive and respiratory systems.
"Experts" say that about 2 percent of people with CF get liver disease. As fate would have it, Allan has cirrhosis. This makes it hard for him to use even the simplest over-the-counter remedies. If he gets a headache, he has to live with it. Aspirin would just make his liver worse.
On March 27, 1997, Allan was brought into the ICU of UC Irvine. He'd become jaundiced and was vomiting blood. I, along with his brother and his sister, waited for hours to see him. I shuffled my feet, bit my nails, made the kind of small talk that tense situations often evoke: how incompetent the hospital bureaucracy was, the strength of the "family genes," how Allan was going to be okay - of course he was, why wouldn't he be, he'd be just fine, right? When we were finally allowed in, there were only 20 minutes until visiting hours were over. No exceptions - policy, you know! I saw him there. My eyes filled with tears I wished I could hide from him. I wanted to scream and run. But I stepped forward and took his hand.
His fingers were cold. When I squeezed his hand, he couldn't disguise his wince. I quickly removed my hand from his. I could not touch him; I couldn't bear the thought of causing him more pain. We all exchanged what words of comfort we could before our time was up. Allan whispered, "Lean over here really quick!" and we shared a hurried kiss before I backed out of the room, wanting to hold his eyes with mine every second I could.
It was a long drive back home. Allan was admitted to uc Irvine Medical Center because they have a "good reputation" with liver transplants - and that's what Allan needs. He's been on the waiting list for about a year now. They keep assuring him his "turn is coming soon." That's why he seems to keep getting admitted every time I turn around, but so far, all that's happened is more waiting - and trips to doctors and hospitals - and the pain of separation, the sharp pang of just not knowing WHEN.
I hadn't known very much about cf before I met Allan. I figured that he shouldn't have to fill me in on all of the things I didn't know, so I asked the Cystic Fibrosis Foundation to send me some literature. I learned that most men with cf are sterile, but many of the women are able to have children. The newest median age of death is 30.1 years, when only 10 years ago, people with this disease weren't expected to live through childhood. Progress is being made, and that gives us hope. But hope is small comfort when the one you love is in pain and there is absolutely nothing you can do to relieve it.
Later that night, when my mother had gone to bed, I played Metallica's "Fade to Black" over and over again. "Emptiness is filling me / to the point of agony / deathly lost, this can't be real / cannot stand this hell I feel...." And I cried. Everything in me shrieked, "He deserves better!"
For weeks after that, I did nothing. I sat in my room and listened to music. I wrote angry poetry and ignored my studies. I realized that I had to continue my life. How would I be able to help Allan if I were a nervous wreck myself?
When I finally went back to the home-schooling office, my math teacher asked me why I had been gone so long. I tried to explain the situation as best I could, but the tears came again. When my teacher excused me, I went into the test room and wept, trying to complete a test on biology.
Allan is still in the hospital, waiting on his transplant. He's gotten better since that day in March, but he's still got a long way to go before things return to the way they were. Of course, the transplant will not cure his cystic fibrosis - there is no cure. But dwelling on the future makes even less sense than dwelling on the past. The doctors say he should be home in the early summer, if all works out well. I have sworn to take care of him when he is released. After the transplant, he will need someone to help him - physically and emotionally. I have dedicated my life to helping him rebuild his.
I do not love him out of sympathy or empathy or pity. I do not know why I love him, or if I am what he needs. I know only that I do. Why else would I be his living will? He has asked me to let his story be known. He doesn't want to die and be forgotten. He doesn't fear death. He fears to be gone without having left a mark on the world. This is not my story or Allan's: it is our story, composed in bits and snatches, woven from love and pain and joy.
Many people would feel that I am too young and immature to be taking on the responsibility of caring for another. To these people, I send a hearty, enthusiastic "fuck you." My mother was diagnosed with multiple sclerosis when I was still a kid, and I've always helped her with any problems the ms might have given her. And so, having had experience with what society calls "a disabled person," I know I am capable of helping Allan. More than that - of looking past the "disability" and seeing the living, breathing, feeling, thinking human being the disease masks. I pray for him. That's all I can do.
I look back to the first weeks I knew him - defiant, charming, healthy. It makes me very content to think that, after all of this hell, he could be that way again. That our "big plans" for the future may be delayed but could eventually come through. These are the thoughts that keep me alive.
I won't lie. I won't say that this relationship can't be depressing, that I never let the sadness get to me, that I never get pissed off or fed up. It hurts a lot. Hope and determination are the only things left. Hope for our future, hope for happier times. Determination for making his life - and mine - worth it all. Uscire da il regno di dolore, Allan. Io amare per vi.
Here's something you might be interested in.
Dedicated to Alan, who has CF
Death – something to take advantage of
Dedicated to Alan, who has CF
Death – something to take advantage of
San Diego — The last time I saw Allan, he was a broken man. Hooked up to machines that monitored his lifebeat; tubes pumping drugs in, needles taking blood out. His eyes were beyond bloodshot. Always slender, he had dropped some weight. His wiry frame had become a skeleton wrapped in skin.
I first met Allan on a computer bulletin board system. We'd traded e-mail for a while, discovered we shared many of the same interests and philosophies. He was very honest - he told me right away that he had cystic fibrosis. Things progressed quickly; we became fast friends. Soon, we had our first "date."
We were at my favorite restaurant. We sat down to our salads, and as I stuck my fork into a piece of lettuce, I heard a rattling sound. I looked up and saw him pop six or seven pills into his mouth. He told me that he probably wouldn't be able to digest his chow at all if he didn't take them each time he ate. CF is, after all, a disease of the digestive and respiratory systems.
"Experts" say that about 2 percent of people with CF get liver disease. As fate would have it, Allan has cirrhosis. This makes it hard for him to use even the simplest over-the-counter remedies. If he gets a headache, he has to live with it. Aspirin would just make his liver worse.
On March 27, 1997, Allan was brought into the ICU of UC Irvine. He'd become jaundiced and was vomiting blood. I, along with his brother and his sister, waited for hours to see him. I shuffled my feet, bit my nails, made the kind of small talk that tense situations often evoke: how incompetent the hospital bureaucracy was, the strength of the "family genes," how Allan was going to be okay - of course he was, why wouldn't he be, he'd be just fine, right? When we were finally allowed in, there were only 20 minutes until visiting hours were over. No exceptions - policy, you know! I saw him there. My eyes filled with tears I wished I could hide from him. I wanted to scream and run. But I stepped forward and took his hand.
His fingers were cold. When I squeezed his hand, he couldn't disguise his wince. I quickly removed my hand from his. I could not touch him; I couldn't bear the thought of causing him more pain. We all exchanged what words of comfort we could before our time was up. Allan whispered, "Lean over here really quick!" and we shared a hurried kiss before I backed out of the room, wanting to hold his eyes with mine every second I could.
It was a long drive back home. Allan was admitted to uc Irvine Medical Center because they have a "good reputation" with liver transplants - and that's what Allan needs. He's been on the waiting list for about a year now. They keep assuring him his "turn is coming soon." That's why he seems to keep getting admitted every time I turn around, but so far, all that's happened is more waiting - and trips to doctors and hospitals - and the pain of separation, the sharp pang of just not knowing WHEN.
I hadn't known very much about cf before I met Allan. I figured that he shouldn't have to fill me in on all of the things I didn't know, so I asked the Cystic Fibrosis Foundation to send me some literature. I learned that most men with cf are sterile, but many of the women are able to have children. The newest median age of death is 30.1 years, when only 10 years ago, people with this disease weren't expected to live through childhood. Progress is being made, and that gives us hope. But hope is small comfort when the one you love is in pain and there is absolutely nothing you can do to relieve it.
Later that night, when my mother had gone to bed, I played Metallica's "Fade to Black" over and over again. "Emptiness is filling me / to the point of agony / deathly lost, this can't be real / cannot stand this hell I feel...." And I cried. Everything in me shrieked, "He deserves better!"
For weeks after that, I did nothing. I sat in my room and listened to music. I wrote angry poetry and ignored my studies. I realized that I had to continue my life. How would I be able to help Allan if I were a nervous wreck myself?
When I finally went back to the home-schooling office, my math teacher asked me why I had been gone so long. I tried to explain the situation as best I could, but the tears came again. When my teacher excused me, I went into the test room and wept, trying to complete a test on biology.
Allan is still in the hospital, waiting on his transplant. He's gotten better since that day in March, but he's still got a long way to go before things return to the way they were. Of course, the transplant will not cure his cystic fibrosis - there is no cure. But dwelling on the future makes even less sense than dwelling on the past. The doctors say he should be home in the early summer, if all works out well. I have sworn to take care of him when he is released. After the transplant, he will need someone to help him - physically and emotionally. I have dedicated my life to helping him rebuild his.
I do not love him out of sympathy or empathy or pity. I do not know why I love him, or if I am what he needs. I know only that I do. Why else would I be his living will? He has asked me to let his story be known. He doesn't want to die and be forgotten. He doesn't fear death. He fears to be gone without having left a mark on the world. This is not my story or Allan's: it is our story, composed in bits and snatches, woven from love and pain and joy.
Many people would feel that I am too young and immature to be taking on the responsibility of caring for another. To these people, I send a hearty, enthusiastic "fuck you." My mother was diagnosed with multiple sclerosis when I was still a kid, and I've always helped her with any problems the ms might have given her. And so, having had experience with what society calls "a disabled person," I know I am capable of helping Allan. More than that - of looking past the "disability" and seeing the living, breathing, feeling, thinking human being the disease masks. I pray for him. That's all I can do.
I look back to the first weeks I knew him - defiant, charming, healthy. It makes me very content to think that, after all of this hell, he could be that way again. That our "big plans" for the future may be delayed but could eventually come through. These are the thoughts that keep me alive.
I won't lie. I won't say that this relationship can't be depressing, that I never let the sadness get to me, that I never get pissed off or fed up. It hurts a lot. Hope and determination are the only things left. Hope for our future, hope for happier times. Determination for making his life - and mine - worth it all. Uscire da il regno di dolore, Allan. Io amare per vi.
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