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This month the editors of Newsline suggested that the focus of my article should tie in with the central theme of this month,s magazine and, as you probably have figured out by now, that theme is grief and bereavement. Frankly, I would prefer to write about the fashion scene in Paris or about sure-fire pick-up lines, but, being the responsible and obedient writer that I am, I am following their request.
Yeah, sure, I have lost a lot of friends to AIDS and I know that I am about to lose another one very soon, but I still don,t really know how I feel about it all, nor am I at all clear about how I handle death. Some are a lot harder than others and some take longer to get over, but the fact is that all of them have a very profound effect; none of them are ignored or passed over. Naturally, the deaths of very close friends are the hardest to take and harder to get over but news of any AIDS death is difficult. Well, that,s not really true. I would be overjoyed to hear of death from AIDS for Newt Gingrich or Jesse Helms.
The death of my friend Robert in April was especially difficult to deal with, but, as with many AIDS deaths it was also sort of a blessing. He had been sick for about six months and had spent almost that entire time in a hospital. Moreover, not only was he in the hospital, because of the fact that his white blood-cells were completely destroyed, he had to spend most of that time in isolation. However, that wasn,t all.
He was also forced to go through every stupid, and perhaps unnecessary, test the doctors could dream up. This went on until Robert refused any further tests and all medications. He didn,t die right away, but at least he felt that he had some control over his fate.
Another factor which confused my feelings about Robert,s death was concern for our mutual friend John. John and Robert were very close and since all of Robert,s family were in California, and also because Robert trusted John, he became Robert,s caretaker during those torturous final months. John also has AIDS and while his health is quite good, like all of us he needs to watch out for himself. He was just terrific in visiting Robert and seeing that he was comfortable and had whatever he needed. No one could have ever asked for a better friend. However, as the months went by I began to see the effect all of this was having on John. He remained healthy, but you could just see that he was running on empty. He was carrying an extremely heavy dual burden: his best friend was dying and he was dealing with the very difficult task of being a caregiver. Toward the end my concern began to shift from Robert to John. Thank goodness he came through it with his health intact, but I was worried.
John was able to handle Robert,s passing pretty well. I know he thinks of Robert a lot, but he is dealing with it all. John arranged for a lovely memorial service and I,m sure that helped him with closure. I had a rather hard time at the memorial. I thought I had adjusted to the fact that Robert was gone, but when I saw his picture I experienced the whole gamut of emotions all over again. I resolved then and there to never again attend a memorial service or funeral. Of course, I know that I will not be able to keep that promise to myself. I think I decided that because somewhere in the back of my feeble mind I must have been thinking that death is easier to deal with if one doesn,t see it. If you don,t actually see death, then it doesn,t exist.
But anyone with AIDS will tell you that it is not death that actually scares us, it is the realization that the next death could, and might well be, our own. This doesn,t mean that we are any less upset about our loss, but, face it, we are dealing with our own mortality every day. Now I don,t want to hear that every living person is aware that they will die; I,m sick to death of that bullshit! The abstract notion of a healthy person that they might walk out their door and be hit by a car is just not the same as it is for someone living with advanced AIDS. Our deaths are not some remote possibility - they are an inevitability! For us the idea is not if; the question is when and how! And I truly think that the fear of how we will die is our biggest nightmare.
From the calls I get on the PWAC NY hotline that deal with death the fear I most often hear concerns how death will come and how long will it take. I get really ticked off at movies and plays that depict death from AIDS as being some Cinderella type thing in which the person simply lies down and drifts off to sleep. Honey, if that were true, you would see a lot more open caskets at funerals. Let,s face it, this is an ugly way to die. We don,t leave beautiful corpses behind. (If you don,t believe me, just think about Rock Hudson.) The people who call the hotline know this and they are worried. Of course you get calls from people who have 800 T-cells and the tendency is to dismiss them and tell them that they have years and years to live and that they should just get on with their lives, but that would be wrong. Regardless of the number of T-cells a person does or does not have, they share the common (and justified) worry about what their death will be like. They want to know when they can expect to begin getting sick; how long they will be sick; whether they will get dementia; and how long it will take to die.
Then there are the PWAs who have been through a lot of illnesses and infections and they only wonder why they are forced to continue living. I recently received a very moving letter from a PWA named James who lives in Florida. I want to share some of that letter with you.
I want to thank you for your article in the September 95 issue of Newsline. Now I know I,m not the only one who has felt everything you have felt, the exhaustion, the loneliness (and I have a lover), and especially the feeling of being damned tired. Some mornings I wake up and wonder, why another day? Why didn,t I go in my sleep? Another day of physical and emotional pain. Another day of not being able to function as I once did. Another day of watching both my weight and appetite drop. Who needs it!!! I,m a Christian and I believe in a better life after this one. I,m secure in knowing where I,m going after this so why the hell can,t I just go? Watching the pain in my lover,s eyes every time some new illness strikes, and knowing he is wondering how much time we have together. Watching him patiently trying to explain something very simple that I can,t understand because my brain doesn,t function normally anymore. Knowing that there are aspects of his work and life that I can,t share with him any longer because I just can,t understand. Having to sleep in a hospital bed in another room because I am afraid of keeping him awake with my hacking and night sweats. Then when I am feeling better and can share a bed with him, the fact that I wake up in the middle of the night in a panic confused about where I am and crying uncontrollably. It,s bad enough that I have to suffer from AIDS, but why do I have to drag another person down with me, and that,s just how I feel, that I,m a total drag on everybody.
I,m sure you found James, story as hard to read as I did, but it must have been even harder to write.
About three months ago we had a call from a brother of a PWA who was seriously ill and about to die. I did not take the initial call, but I did answer the follow-up call a few days later. The story was that this man knew that his brother was dying and that he was in a lot of pain and just wanted to die. It was obviously a close relationship and the wishes of the PWA were paramount in the mind of the brother who was calling. Basically the brother wanted help in deciding to pull the plug on the PWA. The doctors had told him there was no chance of recovery and that the PWA was in great pain. After what I understand was a very long and emotional conversation the brother reached the decision to stop all life-sustaining operations and let his brother pass. A few days later, I answered the phone and it was the brother calling to thank us for helping him decide what to do. After the life support was stopped, the PWA passed two days later with all of his family at his side. The brother was upset but he knew that he would have been more upset watching his brother linger and die inch by inch over an extended period of time. The grief was real for this family but the knowledge that they had done what was best for the PWA helped to ease their pain somewhat. The sad part of this episode for me is the knowledge that the operator who initially took the call passed away a month ago. With AIDS death just seems to follow death.
I think that death and bereavement are especially hard for PWAs because we are both the survivors and the dying. How do you deal with death when you are fighting for your own life? How do people stop and take time to grieve for the departed when they are worrying about whether or not they will be next? I think, and several of my friends who are doing well agree, that you handle death by living! You do everything you can possibly do to see to it that your life is fulfilling and you don,t sit around waiting for the Grim Reaper. I tell you one thing, when death comes knocking on my door, I don,t plan on being home. Let the son-of-a-bitch come looking for me! I know that not everyone is as stubborn or arrogant as I am, but damn it, what,s the alternative? As the painter Claude Monet once said, "Nothing worth having comes easy.o/oo Living isn,t easy for anyone, but as we learned from the experiences of James and Robert, death is not easy either.
I still don,t know how I feel about death, and after writing this I am still confused. I am a Catholic and I think some sort of spiritual feelings do help. I have also studied a little Hinduism and Buddhism and I have come to believe that this life that we know now is only a stepping-stone to an even greater life. I don,t believe in hell (except for Helms and Gingrich, and maybe Ronald Reagen, and oh yeah, Nancy). I also firmly believe that AIDS is not some sort of punishment. It is just a disease stupid! I truly believe that what affects or determines our fate in the next life is how we deal with life right now. I don,t know if I am right, but these beliefs help me a lot.
I also strongly believe that, if at all possible, we have to reach out and help other people. It doesn,t matter how insignificant you might think your help might be, every time we reach out to others we are actually helping ourselves. At PWAC NY, we volunteers know a lot of people who have died and are dying. However, by continuing to do our work we honor the memory of those who have died and we help the living. Hopefully, when we pass on there will be other volunteers to take our place and keep our work and memory alive. I firmly beleive that without my work, I would be dead already. As many of you know I did try to take my own life last year and I know now that one of the reasons I tried it was because I was far too concerned about myself and oblivious to all the pain that others were going through. Now I hope that my writing, hotline work, tutoring and trying to be as good a friend as John was will help others and that my battles will help to make someone else,s battle a little easier. My godmother thinks that my being at PWAC NY hurts my health, and maybe it does a little, but I don,t think God wants or expects us to turn our backs on things that are difficult or unpleasant. And I guess that includes death. Maybe the idea is that by learning to deal with death we learn to deal with life, or vice versa. I don,t know. Does this article make any sense?
By the way, I got a letter from James the other day and he sounded much better. It seems that having someone to write to helps him. He is actually looking for a pen-pal in the central Florida area. If you are interested, please write to me at PWAC NY and I will forward your letter. Actually, I am starting a pen-pal service at PWAC NY. If you would like to be paired off with someone just write to me and tell me what you are looking for and I will try to match you up. Now, this is not a dating service, but if a wedding happens ~ MAZEL TOV!
Just a quick personal note here. Other than the fact that I just got over a bout of thrush in the esophagus and some of the worst fatigue I have ever experienced, I am having an anniversary. It has been three years, this November, that my T-cells have been below fifty. Not bad for an old queen! I think I,ll go to Paris and cover the spring fashions for Chanel. AU REVOIR MES PETITES!
Kyle Beard is a hotline volunteer at PWAC NY.
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