A Matter of Choice
by Julie Fybush

It is very easy to get caught up in controversial issues in relation to politics. Everyone has their own position and most feel that their opinions are the only truly "right" ones. Amid all this grandstanding and arguing, the real issue can sometimes be forgotten. For many people, it is not a question of politics, but a question of life and death.

Assisted suicide. The right to die. You can give it whatever name you want. It doesn't matter what you call it. No matter what the name, the end result is the same. By the time it was over, I would be missing a friend.

Remy knew he was sick. He could accept the fact that he was dying, even if the rest of us could not. He had tested positive for HIV almost a year ago. "Testing dirty" he called it. At first it seemed like a cruel joke. He had been exposed to a deadly virus, but he was perfectly healthy. It was like a death sentence. He felt fine, but he was waiting to die. For me and the four people that made up our little nucleus of friends, it was impossible to believe. He looked exactly like the rest of us. It was difficult to imagine that he had a killer inside him that was wreaking havoc with his body.

The longer he went without showing any symptoms, the more the rest of us wanted to believe he would be okay. We could put aside the cold facts of what we knew was the truth. He wasn't going to be okay, not forever. He said it was almost a relief when a case of pneumonia prompted the diagnosis of full blown AIDS ten months after his initial diagnosis. At least we were no longer playing the waiting game, afraid of what might be just around the corner. We had been waiting for the other shoe to drop. It had fallen now, and it had fallen hard. All of a sudden all the things that we had been dreading were happening.

Once Remy got sick, he deteriorated very quickly. Within a short time, he was very weak and was showing signs of being ravaged by the disease. He was unable to do very much and had to spend much of his time resting. He used this time to think. He said he wanted to think a lot before he lost his ability to do so. Before too long, he told the rest of us just what he was thinking about.

He had decided he was not willing to die of AIDS. He said he would not let it kill him. He still wanted to feel like he had control of his own life, and he planned to exercise that control by choosing when and how he would die. It was not a decision that he took lightly. He put a lot of thought into it and weighed all his options. At the young age of twenty-one, his options were sadly limited. HIV had left him victim to a myriad of health problems. He was losing his ability to take care of himself. It wasn't how he wanted to be, and it certainly wasn't how he wanted all his friends and loved ones to remember him. He held on as long as he could. But when he was diagnosed with a brain infection, he decided he couldn't hold on any longer. The time had come for him to let go.

When Remy first tested positive for HIV, he became involved with the local AIDS foundation. He had joined one of their support groups. His interactions and friendships with other people with AIDS introduced him to the idea of taking his own life. He was not the first of his friends to do so. It was almost an accepted practice. Many AIDS patients believed it was okay to choose when they were going to die. AIDS is an ugly, horrible disease that can rob you of everything you have. Those people suffering from AIDS believed that it was acceptable to refuse to surrender your dignity, even if it meant surrendering your life. The infection in his brain would soon make Remy unable to think coherently, speak or walk. It would reduce him to a vegetable like state, where he would linger until some other opportunistic infection finally killed him. Not only did he not want to die this way, he didn't want all of us, his friends and family, to have to watch it happen. The brain infection is a very rapidly progressing condition, so he needed to make his plans immediately. He had been working on the details ever since his AIDS became full blown. Unknown to us, he had built up quite a supply of drugs. His friends in the AIDS community were able to tell him how much would be enough to kill him; there are medical professionals that will secretly provide assistance to those who have made the decision to die. He wanted to do it before he became unable. He could have done it privately and never told anyone what he was planning. Remy decided he couldn't do that. It wasn't fair to leave all of his loved ones with so many unanswered questions about what he had been thinking and why he had done what he did. He decided to tell all of us what was going on.

No one knew what to expect when Remy called the five of us over to his place one August night. We certainly never expected to listen to the speech he was prepared to give. Very rationally, Remy laid out his reasons for wanting to kill himself before the AIDS killed him. He was perfectly calm and composed. It was clear that it was a decision that he had put a lot of thought into and one that he was at ease with. It was probably the most composed he had been since he had first tested positive.

Hearing your friend say he is ready to die is a very difficult thing. My first reaction was to protest. I thought he couldn't possibly know what he was talking about, that the disease was already taking a toll on his brain. He understood our objections and expected them. He said that he knew it was a troublesome thing for us to understand. The six of us always had the same thoughts on many things because we were alike in so many ways, but something had changed now, and Remy had become different. The six of us were no longer all on the same path. Five of us were twenty-one years old and still had the rest of our lives ahead of us. Our futures were open and we could be whatever we wanted to be, but Remy could not. He could not look forward to marriage, a career, or children. He had to look forward to becoming completely incapacitated and totally dependent on others. The only thing in his future was a slow, painful death. In spite of all that, Remy actually felt sorry for the five of us. He thought he had the easy part. He would just be gone, his life over and done with. It would be much harder for those of us that he left behind. We would have to learn to live without him. That time was now coming much sooner that any of us had planned and he wanted us to be prepared. He had decided to take three days to get his affairs in order and say his good-byes. Then, on the anniversary of the death of Jerry Garcia, he was going to end his life.

Over those three days, I thought of little else besides Remy and his plan. I knew that it was impossible to change his mind and that he believed in what he was doing. Unfortunately, that did little to ease my mind or my dolor over what was going to happen. And although I never voiced my thoughts after that first night, Remy knew me well enough to know that it was weighing heavily on my mind. The night before his planned exit, he asked me to take him out for a drive during my daily visit. He directed me to a house shared by a few of his friends, all of whom were HIV positive. In one of the bedrooms lay a man who had been diagnosed with the same type of brain infection as Remy. He was a complete vegetable. He had been brought home from the hospital by his roommates, who were doing their best to care for him. It was only a question of time. His roommates told me that the disease had taken over rather quickly, almost in a matter of days. As I stood in the darkened bedroom listening to the labored breathing of this shell of a person, Remy came in and took my hand and said, "I don't want to die like that." I looked at the withered man lying there and tried to imagine Remy in his place. The thought of it nearly tore me apart. It was at that exact moment that I knew he was doing the right thing. Considering the circumstances, he was making the best decision that he could.

If Remy was going to die, he was going to do it on his own terms. He wanted to go out on a good note. We spent the evening watching movies, drinking beer and hanging out. It was similar to countless other evenings we had spent together. There was just one difference. When we left that night, we said good-bye. Not see you later, not talk to you tomorrow. Good-bye. It was final and forever.

Losing Remy was one of the most painful experiences I've ever had. He was a friend I had all my life. He was always there for me. His absence from my world has been excruciating. I think about him every day and I will miss him forever. I have wept for the husband he'll never be, the children he'll never have and the man he would have been. But I honestly believe that it was better to lose him sooner than later. It would not have done anyone any good for him to linger on in illness. That would not have been the Remy that I knew, and it would not have been the Remy that I wanted to remember. I would rather remember him as he was the last night I saw him. We were together, we were laughing and we were as happy as we could be under the circumstances. I often think of the roommates that Remy took me to see right before he died. Their friend lingered on in that state for almost a month. Their last memory of their friend is of him in agony and pain. My last memory of Remy is of him sitting in his favorite chair listening to his favorite Grateful Dead CD. I wouldn't want to trade those memories.

In no way am I saying that I was ready to lose Remy from my life. I don't think anyone can ever be ready to lose a friend. Remy' s actions were not what took him away from me. His illness did that. At the time I think I honestly believed that if we all hoped enough and prayed enough and loved enough, that Remy would somehow be okay, but I know now that it wasn't true. He was going to die.

The whole situation was one of major turmoil for me. And although the fact that he became terminally ill at such a young age will always trouble me, I am truly at peace about how he died. Any pain it caused me was pain it saved him in the long run. And it was pain that I would have felt eventually anyway, as his disease would have inevitably killed him. It gave us a chance to tie up as many loose ends as possible. Of course there are things that I wish I would have told him before he died. But I can pacify myself with the fact that I told him enough during the last three days of his life. I was able to sum up fifteen years of friendship in an excerpt from a poem, written by Robert Hunter, for the funeral of Jerry Garcia, a member of the Grateful Dead and Remy' s idol. It was this excerpt that I gave him before leaving him for what I knew was the last time:

If some part of that music
is heard in deepest dream,
Or on some breeze of Summer,
a bit of golden theme,
We' ll know you live on inside us
with a love that never parts.
Our good old Jack O' Diamonds
becomes the King of Hearts.

I feel your silent laughter
at sentiments so bold
That dare to step across the line
to tell what must be told,
So I'll just say "I love you,"
which I never said before,
And let it go at that, old friend;
The rest you may ignore.

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Updated Monday, April 28, 1997.