Death is an Impostor

There are times when the melancholia comes in waves and it seems like death washes over me and foams on the shore of my soul and fading faces of former friends fuel my feelings of loss…What comes next who goes next and I wait for the next wave bracing myself with words and the love of a good man who holds me when I weep and shields me from the crash of melancholy surf.

Scott, Journal Entry, December 1990

On our first date, the weekend after our meeting, Scott summoned up the courage to tell me that he was HIV positive. He spoke of having gotten the news in 1986, having been summoned from his classroom for an “important call” from his doctor’s office, to be told by a secretary there that he had the AIDS virus. “Try going to a hospital for treatment,” he was brusquely advised, “because we don’t treat terminal patients here.” I tested positive in September 1990, probably having been infected before meeting Scott. Thus, from the very beginning, we were both given the sacred blessing and curse of the knowledge of our mortality, and resolved to savor life together in the very best way we possibly could.

Among the overladen bookshelves in the comfortable upstairs room in our home we called the library sits a framed photograph. In it, Scott and I and a group of our friends are captured having a great time and camping it up in the Florida Keys, a majestic tropical sunset behind us. We were four couples. Of those four couples, only one is still intact. Todd was sick at the time, and we lost him shortly thereafter. Then went Wally, which left us all dazed because even he had not known that he carried the virus. And then, finally, with the bomb that hit me most directly, went Scott. Those of us left behind keep ourselves too busy to spend much time wondering which of us might be next. But we do burst with love for those pieces of our hearts we have lost, and dance in their memory for whatever time we may remain here.

Keith Haring   Heart

Following a horrifying hospital visit to a very ill friend in 1991, Scott was moved to come home and write this poem:

AIDS Quilt, Detail

Within the first few months of our relationship, Scott was hospitalized with a severe stomach pain that no one could explain. But then he was better, and back to work, and once again full of life. Around Christmas of 1992, though, he started losing large amounts of weight, weight he could scarcely afford to lose. I’ll never forget coming home one December afternoon and seeing a home health care aide sitting at the kitchen table with Scott, explaining to him how to use the apparatus to pump liquid nutrition into his body in a desperate effort to shore up his weight. Scott was immensely practical, not one to make much of such events, but I knew it was a historic and awful occasion. I thought, watching my loved one listen to the monotone of the woman’s technical instructions, “This is the beginning of the medicalization of our lives.” Even as that thought ran through my mind, I thought “what an awful word, medicalization.” I realized, though, that the real problem was not the word but the awful reality behind it.

I remember.

Scott was forced to retire from the teaching he loved and to go on disability early in 1993, at the age of 33. We both feared that we had reached the beginning of the end, but instead grew to realize that the transition opened up new possibilities for both of us. Scott rebounded beautifully, and we were both keenly aware of the precious gift that is life, and its brevity. We unfolded each other as a gift, exploring our creative muses: Scott his poetry, play writing and acting, and me my writing and art. Against the backdrop of the knowledge of HIV, the everyday rituals often taken for granted became quiet causes for celebration. Simple meals taken together fed our souls and left us deeply satisfied; time spent together was the richest luxury. We tasted as much of the world as possible, traveling when we could. We had become witnesses to one another’s lives.

But from time to time another close friend would be lost, or terrible sickness would again rear its head, taking the wind out of our sails. During one trip Scott made alone to visit his dear college friends in Mississippi in the Fall of 1993, he was suddenly beset by one of the burning fevers that periodically arose without explanation. Terrified and far away from home, he turned on that dark night to the familiar comfort of his journal for solace. “Then later last night I got hit with a fever and it really scared me,” he wrote. “I got to shaking so bad I couldn’t stop and weepy. I went to bed, but couldn’t sleep because my mind was crazy racing.”

Hans Holbein the Younger, The Ambassadors. A great and haunting master work by a master artist, housed at the National Gallery of Art in London. Note the bizarre object impressively hovering at an angle across the bottom foreground of the painting:

That unseen”elephant in the room” is a skull, not distorted but depicted at an extreme angle.  It can best be “seen” by looking up at the canvas from the bottom right.  Here is that image, “adjusted”:

Alone and weakened by fever, recalling with horror a call we’d received at the law office shortly before from a man whose life partner had died of AIDS by his side even as they were both airborne on a flight, Scott continued in his journal. “I was afraid I would die before I got back to Paul, that I would have to get on the plane sick and shaking like the USAir client and then I would die on the plane. I saw death in the room with me. Many deaths. They floated about me like clouds and hid in the corners with smiles. They moved fast and teased me. They are still here now waiting in the peripheral corners of my eyes laughing knowing they can choose me whenever they want. That it can be fast.” Though Scott finally made it back from that trip, the point had been once again driven home that no simple trip could leave the virus or its ravages behind. No matter where we traveled, how sweet the time we shared, those elusive shadows were never far away. They were infinitely patient, and could afford to wait, but would they?

Scott used to love to see old couples sitting on the benches in the park, walking hand in hand, sharing meals in restaurants, just being together. He used to tell me, a wistful smile on his face, “That’s what I want to be. I’d love that.” He saw a sweetness in their unity, and in the richness of their time spent together, that made him smile. Me, I used to just think that the ravages of old age were sad, no matter what the circumstances. Now I understand more what he was thinking, and of the terrible longing that ran like a silent river underneath our conversations.

Over the years we were privileged to spend together, Scott and I fought a long and difficult battle together as his immune system became increasingly battered, and he more exhausted. It was the most difficult journey I had ever had to take, but was made easier by Scott’s love of life and his amazing bravery. When it comes to battles with terminal illness, one must look for the positives in the situation to avoid sinking into total darkness. These were mine: that Scott never stopped being Scott, that his brilliant mind was never affected, that he never lost control of his bowels, and that he died in peace at home surrounded by his life, naked in bed with me, right where he wanted to be.

Yes, it had been a long and trying journey, but at least we had always had each other. Now, deeply exhausted and broken of heart, I had been left alone. My anguish and pain were complete.

To  Chapter 5