Will Carter

Living in the Context of Dying

Will Carter’s T-cell count is zero. After nearly twenty years battling a virus Will refers to as “him,” the complex regimen of drugs that kept this unrelenting invader at bay no longer works. When I first met him he showed me a photograph of what appeared to be a robust young man, then reported that his friend had died only six weeks after the photo was taken. Clearly, he wanted me to understand that he is ever at risk for a sudden and possibly fatal decline in health.

In the last year, Will has had two bouts of MAC, Mycobacterium Avium Complex, a serious bacterial infection afflicting those who are HIV+ and whose T-cell count drops below 50. The symptoms of this opportunistic disease can include weight loss, fevers, chills, night sweats, swollen glands, abdominal pains, diarrhea and overall weakness. MAC usually affects the intestines and inner organs first. Swelling and inflammation also occur. The first episode put Will in the hospital for an extended stay.

Will came to San Francisco in the early 1980’s, which put him at the front lines when this disease appeared. He found himself infected with HIV by the middle of the decade and soon became a member of one of the early support groups created for those infected. Over the years Will was a member of the Westside Community Health group, it ranged in size from fifteen to twenty-five participants. As members died or moved on, new members would join. To the best of his knowledge, Will is the last person from the continually changing support group still alive. Today he is part of another support group whose members are all long-term survivors sharing the challenges of this journey. When Will broached the subject of dying with members of the group, not simply as the end of life but as part of a process of living, he was met with responses that suggested the subject was simply too disturbing to examine closely. It was then he called the Living/Dying Project.

Will expressed the intention of exploring both dying within the context of living and living within the context of dying. As his condition deteriorated he found himself crossing a line he hadn’t really noticed during the many years he offered solace and support to friends and loved ones ravaged by AIDS. He no longer has the physical and emotional stamina to take the lead in solving problems as he did when he counseled friends and their families on a journey that often led to death.

When I broached the subject of writing something about his journey, Will offered to record our Living/Dying Project one-to-one sessions. I thought it might be useful to hear from Will what this experience has been like and where it likely will take him. He remains committed to dealing with health problems as they arise but is always mindful of his vulnerability. During the weeks we’ve met, Will has been scanned and poked repeatedly as doctors attempt to make sense of the latest assortment of symptoms.

I’m stumbling… there’s a path here but I don’t know exactly where it goes…I’m trying to incorporate meditation into my life… it occurs to me that the meditative state and the death state have a lot more in common with each other than my normal day-to-day state does with either one…

There’s so much to this life that I don’t know how to do…¦ there’s a lack of perspective… we stumble through it… it took me a long time to begin building a life…

No one wants to think about this stuff… the shots… the medication…

There are these little deaths… an episode of diarrhea is a little death… so many of them in life…the question for me is how to get more life out of living, less death out of living…

There is a constant tension, a polarity between the forces trying to expand, coming into something new as other forces cause me to contract… at this point I’m finding a peacefulness I haven’t felt before… things change, but I try to keep myself at the point where this peace continues… then stuff like MAC comes up… like a Jungian metaphor…stuff pops out of the ocean, I don’t see it coming… all of a sudden here’s this sea monster… the first thing I see is how big it is in comparison to the little boat I’m in… it happens to me… my doctor doesn’t call and say in three months I’m going to get MAC… I only know I’ve got it when I get it… it just appears… I can worry about “X”, but I don’t know what “X” is… MAC, PCP, KS…

Trying to meditate the other night… I couldn’t catch my breath… trouble breathing at night, it becomes erratic… I was remembering a guru who said, “think your breath is unimportant, wait until you get to the point where you’re trying to catch it… The breath, where is it? It just sort of happens, it’s a little death to me…

An old line from the Grateful Dead comes to mind… “once in awhile you can find the light in the strangest of places if you just look at it right”… that’s how I want to look at this… people live as though theyâ’ll live forever, anticipating what they’ll be doing in five years… I can’t do that… three to five years from now, who knows… I don’t have the mechanism to lay out a plan, to put all the pieces on the chess board… my plans are very simple… planning is futile…a waste of time… it would take me away from finding who I am in order to create a chimera of who I’d want to be… life then becomes very simple… I’m surprised that this is okay just as it is… I don’t try to find solutions to the world’s problems… so much we get lost in… it looks like its meaningful… and yet it is so NOT…

Strange to me… when the big guy comes, it will be as it will be and there’s nothing anyone can do about it… in this life, we know there is something out there, but we’re not going to deal with it as though it’s a reality… we simply don’t pay attention…

I wanted to talk about this with folks from the Living/Dying Project because the message I’ve been getting was I shouldn’t talk about this… it bothers me… I thought I was being proactive… but my group’s response was they didn’t want to talk about it… death is taboo… coffins from war are not to be seen… we alter reality… these kids are coming back dead, in flag draped coffins… when we say yes, we say yes to that too…

The first person I saw in death who changed my perspective was my foster-mother, Isabel, seeing her in that casket… this was so far away from anything that she was… no spirit there, no life… this might have been one of her old dresses… I understand the importance of rituals of death… but I saw no life there, nothing left of her… not her body… it was a great learning for me… I’ve used that memory often…

I experienced that with other friends. Many of the people with AIDS had twisted deaths, the body left after the battle of life and death… twisted in many ways, emaciated, grotesque from death… from the dying… weeks and months of battle… the husk was all that remained of these great, beautiful beings…

I don’t think much about my own death, so I haven’t made any preparations… the most important thing about this body is NOW that I have it… once I’m gone, this means nothing… you can put it in a couple of bags and put it out for recycling…

One thing I was thinking about… a little macabre… willing my body to UCSF… I’ve spent a long time chasing this disease… active with people exploring AIDS politically, psychologically and medically… I have smiled because I know it so well… this virus… its personal, “he” took my life,”he” took the fun, “he” took the lives of my friends… everybody has learned at this point in my life not to say anything nice about the virus around me, this been a struggle, a battle, a life-consuming effort… if I could go at “him” one more time… I’ve spent most of my life on drugs, going to doctors, feeling miserable… I battled “him”… it would be one more battle, from the grave… one last time…

It was a given from the beginning that the virus and I were in a battle and that he would win… the context of winning has shifted… it took twenty years to kill me…

I’m doing what I can do… I feel well balanced in this precarious perch between life and death… it can happen, death can come along at any point… my thing is to enjoy, try to find meaning in what I have left… I’ll only have it left this once in my life… when I die all this goes, the meat and the matter of this goes…

Will recently began a new regimen of medicines to see if his immune system can be reactivated. The medicines have side effects, including hiccups that have been with him for over a month as of this writing. The CAT scan done to see if there is a tear in his esophagus revealed anomalies that led to further tests, including a colonoscopy, endoscopy, additional scans, and a bone marrow biopsy. Finding life in the midst of these medical interventions is the challenge facing Will. We are continuing our conversation about this remarkable journey, living in the face of dying.

(As this article was nearing completion, Will entered the hospital for further tests. He informed me by email that “unfortunately, my health has taken a turn for the worst.” What that means for Will’s prognosis is unclear at the moment. What is clear, however, is that I’ve been unable to review the completed article with him. Since we had many conversations about telling his story based upon recordings that he copied onto a compact disk before I began writing, I have confidence that he would wish me to publish the article in the Living/Dying Project newsletter. I’ll share it with him the next time we meet.)

–Curtis Grindahl