August of 1991 Ray Gay passed on, he and Mal Cook had been together over thirty-five years. Ray was seventy-five, not another AIDS casualty. It was heartbreaking for me at so many levels – in a way Ray was like a father to me, the ‘gay’ father that I never had – and I felt badly that my responsibilities for Vince’s care prevented me from going back to Rhode Island to be with Mal during that difficult time. In lieu of that we invited Mal to join us for our ten days in Hawaii, leaving January 3rd 1992. We had a timeshare week in Princeville, on the island of Kauai, after which we would spend three days in Honolulu.
We had only about forty minutes between our arrival at the airport in Oahu and our flight to Kauai, so we found the appropriate waiting area, where we waited and waited and waited – while standing in line, no less, not even seated. Three and one half hours later we started boarding for the thirty-five minute flight. Once in Kauai I told Vince and Mal to go to the baggage area and get our luggage, while I made a mad dash to car rental, hoping they still had a car for me. They did.
A half hour later I was back at baggage claim. The carousel was stopped, and empty except for Vince and Mal sitting on the edge of it sans luggage. There were so many bags strewed on the floor of the area, that there was hardly any room to walk. So I asked them, “Where are our bags?” “We don’t know, they never came off of the carousel.” “Did you check with the office?” “No.” “Did you look at any of these bags on the floor?” “No.” “What did you do?” “We sat down and waited for you.”
Do you remember what I had said previously about me being the ‘detail’ man, the one who got things done, while the other dreamed? Well, Ray had been the detail man in his relationship with Mal. Now I had two to look after. Our bags were found on the floor, where clearly they had been all along, and soon we were heading north to Princeville.
The resort was a sprawling secluded affair covering many acres of rolling hills, with beautiful views of the mountains surrounded by lush foliage – just above Hanalei Bay where “Puff the Magic Dragon lived by the sea, and frolicked in the autumn heat in a land called Hanalei.“ Our one bedroom condo was privately situated on a ground level with a patio, complete with a resident flock of chickens looking to get fed. During a hurricane some years previous, the coops at the KFC chicken farm blew over and all of the chickens escaped, and went feral, so at the time Kauai was inundated with wild chickens. Despite a sign saying, “Don’t feed the chickens!” we did.
The north end of Kauai was not so heavily developed as the south—it actually seemed somewhat isolated—and we drove around a bit taking in the pristine surroundings, the flora and fauna. We spent many an hour on the beach where Mitzi Gaynor was “gonna wash that man right out of [her] hair” in South Pacific, and I had a lot of fun playing in the sand, like I did when I was nine. One afternoon we explored the southern part of the island, looking for a restaurant that would satisfy Vince. That wasn’t going to happen.
We did go to a traditional luau one night, pig cooked in the ground and all that, but I ate lightly. That pig was staring at me. At the luau we noticed another ‘gay’ couple, one in a wheel chair for obvious reasons … that portending of the future put a damper on the rest of the evening, for all of us I think. Rather than a helicopter tour, we opted for a small plane (I opted, helicopters freak me out) from which we had a spectacular flight over the whole island. That evening while, Vince was resting, Mal and I took the long and winding road north from the resort to Charo’s restaurant and bar for a drink, where we were the only patrons. Charo wasn’t there so no “cuchi-cuchi” for us.
Vince was pushing to go horseback riding and I finally gave in, but only a one hour ride not two! It was the most painful ride I had ever taken. We stopped for a rest when it seemed as though we should have been heading back, and that’s when Vince confessed that he had signed us up for two hours. I didn’t get off the horse because I knew that if I did I’d never get back on – if I knew at the time how close we were to the corral I would have walked back then.
Instead, I pulled my legs up—lifting them with my hands, they were incapable of motion on their own—to stretch them out, at which time they started to spasm. By the time we got going again my misery and pain was boundless, and then my horse stepped into a hole, jolted, and I got the saddle horn right in the gut … UGH!!! It seemed as though this ride would never end.
As soon as the ranch and corral were in sight, I was ready to walk the rest of the way, so with Vince’s help I got off of the horse. I was hanging onto the saddle for support, but as soon as I let go my legs crumbled and I went down. They reminded me of those little wooden toys for children, a man or animal that is held together and upright with strings, and when you push the button underneath they collapse.
Someone was pushing my button, my legs were collapsing. I kept pulling myself up, then they’d crumble again as soon as I let go of the stirrup. This went on for about five minutes, before feeling started to come back and I could gradually stand on my own. Walking back to the ranch a young woman in our party (a newlywed, she and her husband were on their honeymoon) said, “Perhaps you should have just gone for one hour.” “That’s what I agreed to,” I said, “but he booked us for two anyhow. You wait until you’ve been married ten years, then you’ll never get your own way.” “I don’t now!” she said.
Our trip included three days in Honolulu, and our hotel (not a timeshare) was across the street from Don Ho’s “Tiny Bubbles” nightclub, where there was an unending parade of tour busses, and blue haired old ladies. We did the usual, and had dinner one night at Hamburger Mary’s … the Honolulu branch. Afterwards Vince and Mal commented that there wasn’t much of a bar, referring to the small bar in the restaurant.
So I led them to a beaded doorway at the back of the restaurant, and while parting the beads I said, “That’s not the bar, this is the bar!” And quite a bar it was. A large bamboo enclosed, tiki lantern lite, tropical paradise full of hot half-dressed men … and it was rocking. So much so, that I think we left without even having a drink. Truly, at that juncture the tiny quiet bar in the restaurant was more our speed.
Mostly Honolulu hadn’t changed much since my visit a decade earlier: very urban, very crowded, very Japanese. A few residents told me that no matter what ones credentials were, it was impossible to get a job in any of the up-market venues (hotels, restaurants, shops) without being fluent in Japanese.
Back home something didn’t seem right, and then we realized that Linda Pavia (who was our house/Pug sitter before Lynda Bunn) must have left on the Friday, not Sunday, the day we returned. She had figured we were on the usual timeshare Friday to Friday routine, and quite clearly never even looked at my detailed list of instructions and information. All was well though. Petal’s was not about to waste away without food for two days, although I’m sure she was hungry, and her water bowl was a big one which Linda had filled it before she left.
Mid-February Vince was diagnosed with CMV esophagitis, and started chemotherapy – IV infusions two hours each day. The CMV went into remission, and chemo was stopped after eight weeks. The next few weeks he was plagued with gastrointestinal (GI) discomfort, a side effect of the anti-viral drug he was taking – or so we thought – until I rushed him to the emergency room in the middle of the night, where he had an 11th hour appendectomy. Three days later he turned forty, and the next day he was diagnosed with CMV retinitis in his right eye. Although at that time not yet sight threatening, he went back on the chemo for the rest of his life.
At the end of June his sister Cheryl came to visit for two weeks, along with her husband Tony, the two boys Nick (12) and Chris (7), and cousin Tina with her six-month-old daughter, Olivia Rae. I converted my office to a guest room for Cheryl’s gang of four, and the small room adjacent to the bathroom provided comfortable accommodations for Tina and the baby. That room was furnished with a single bunk style bed, with storage underneath, and I had had the portieres from #3848 altered, and hung them on the side and foot of the bed, so that they could be drawn for privacy and light blocking, as it was still a walk through to the bathroom. With a borrowed crib in one corner, Olivia Rae was provided for as well.
Petals was totally fascinated with Olivia, the first time she had ever seen a baby, and she never let Olivia out of her sight. We had also borrowed one of those baby swings that are wound-up, and when Olivia was in it Petals sat there watching, her head going back and forth as Olivia swung in the swing. When Tina was sitting on the sofa breastfeeding, Petals would go on the back of the sofa, and watch the baby from over Tina’s shoulder. When Olivia was in the crib Petals was glued to the side, and whenever Olivia made a sound, Petals would coming running into the living room barking. She was precious, a real little mother.
One day we all went to Santa Cruz to spend some time on the beach and the boardwalk, and it was wonderful to watch Vince and his nephew Nick. They had such a good time together, and went on most of the rides. We all had a great time during their visit, and it was a very sad day when they left for home. The next day Vince had his bi-weekly eye appointment, and that afternoon he was having emergency surgery to reattach the retina in his right eye.
It had been compromised by the CMV, and we believe it was the pressure from some of the rides that had caused it to detach. The surgery went beautifully, and after a few weeks and a change of glasses he started to get sight back in the eye, but it was short lived. From that point on that eye didn‘t function, and the doctors never knew why. The retina had been perfectly restored and the CMV was in remission.
With IV infusion a daily routine, Vince was scheduled to go in for a central line placement the end of July. Up to that point he had had temporary lines in his forearm, which had to be changed periodically. The central line would be placed through his chest into the superior vena cava (it may have been the inferior), and it would be permanent. No changing of the line, just periodic dressing changes.
It was at this time, however, that I learned not to trust Vince’s medical judgment, despite the fact that he was a nurse and an AIDS researcher. Even though he was due to have his forearm line changed, he decided it wasn’t necessary – the central line would be going in soon, he said that it could wait until then. Consequently, three days before that surgery, I rushed him to the hospital with line sepsis. He spent a miserable week in hospital, the central line placement had to be delayed, and at home he was on IV antibiotics for an additional five hours a day for three weeks.
Mid-August Vince’s Aunt Ann (a nurse), his father’s sister (who happens to be a lesbian, and I was the only one in the family that she had ‘come-out’ to), cousin Bart (who was married but divorced and also ‘gay’), Bart’s fourteen-year old daughter Sarah (now a lesbian), Bart’s nine-year-old nephew Patrick, and Vince’s nephew Nick (he came back again), arrived for a ten day visit. One day we had a cookout party in the backyard, as a celebration of every one’s birthdays for the past year. Linda Pavia joined us, she an old family friend, they had all grown up together.
The kids had bought the “Home Alone” video game. The package had the picture of Macaulay Culkin with his hands on each side of his face, “Home Alone” above it, and I had an idea. I took the package and cut out the outline of the hands, slipped in a picture of Petals so the hands were on her face, and then framed it. Nick was watching me and when I told him what I was doing, he asked, “Are you really going to do that?“ “Yes, why?“ He responded, “I never thought you were that funny.” Once finished, I gift wrapped the picture and gave it to Linda Pavia, a little memento of the three days that she had left Petals home alone when we were in Hawaii.
We had thought about bringing Vince’s parents to San Francisco for a visit in the fall, no doubt by train, but mid-October Vince’s father had by-pass surgery, so on the 23rd we flew back to Schenectady for a week so that he could be with them. It was good to be back ‘home’ with the family again, although Vince was sick most of the time with bronchitis and acute sinusitis, and I was stressed out to the extreme and exhausted. We were primarily staying at Cheryl’s, although we spent two nights at his parents‘ and one at Tina’s.
At first I was a bit freaked at the parents’ because I got Lou’s bed, but without fresh sheets. Then I thought, Get over yourself, girl! How many strangers’ sheets have you slept on, along with the strangers? Like the grains of sand on a beach, it would be futile to try and count. The night at Tina’s was a rough one, Vince was sick all night, and I was up all night changing sheets, washing sheets, and taking care of him. For some reason, during this visit I spent a lot of time with then ten-month-old Olivia Rae on my lap, and the day after staying at Tina’s was no exception, despite the fact that I was beyond exhausted.
That evening a big lobster dinner had been planned for my benefit, and every one arrived at Bart’s house for the feast. Early evening I was sitting in the family room, in front of the fireplace – Olivia Rae on my lap once again/still – looking a bit pallid. When Tina walked in she said, “I think maybe you’ve had enough of the baby for a while.” Not long afterward, before my lobster feast was ready, I ended up down for the count in Bart’s bedroom, with the mother of all migraines. They saved some lobster for me though, and the next day I had a lobster salad sandwich. Big whoop!
Our departure was bittersweet. In the back of everyone’s mind was the thought that they may never see Vince again, and I know that he was thinking the same thing. A week after we got home his father was back in hospital once again with pneumonia. No sooner was he on the mend, when Vince’s mother was admitted with congestive heart failure, plus Parkinson’s and diabetes out of control. It was very painful for Vince, especially not being able to help in any way, and knowing that he was not up to any more traveling no matter what.
Amazingly enough, in the midst of all of this I managed to get some things done on the house. French doors were installed on the front, opening out to the little balcony, replacing the old solid front door. The backyard was cleaned out, including a jungle of wild blackberry bushes. Vince planted a lemon tree, and strawberries that the birds got to before we did.
For his birthday Linda Pavia had given him a gift certificate for Sloat Nursery, which he used to buy six rose bushes. They were planted in a fifteen foot “L” shaped raised planter that I built. David helped me tear down what was left of the old retaining wall and fence on the south side. Over the years the soil from the uphill neighbor’s yard had gradually flowed into mine, so we shoveled most of that back where it came from, and built a new retaining wall three feet high and about seventy feet long. On top of which we built a six foot high redwood privacy fence.
Next I attacked the old back porch. It was so rickety that I didn’t have to tear it down, a few good kicks and most of it came down on its own. After piling all of the old boards in an out-of-the-way spot, there were a couple on the top of the pile with a few rusty nails. That little voice in my head (the same one that had warned me about The Great Blizzard of 1978) said, You had better take care of those or Vince will come out here and step on one of the nails.
After mulling that a bit I thought, He probably won’t even come out into the backyard tomorrow, and even if he does he would have absolutely no reason to come over to this out-of-the-way spot, and climb on top of this big pile of old boards. That was, of course, exactly what he did. By the time I got home he had stepped on a rusty nail, and I had to rush him to the emergency room to get a tetanus shot.
With the old porch gone, work began on the new back bedroom addition and the sixteen foot deck. As usual it was all done according to my stealth system of building inspector avoidance, and I finished the deck first. It needed four steps down to the yard, and rather than just building steps, I designed a much more interesting arrangement.
Three individual two foot by four foot by eight inch thick platforms were constructed and installed as steps, in a staggered arrangement from the end of the deck, terminating at the fourth ‘step’ which was a four foot by four foot platform, eight inches above the ground; sort of a mini-deck. Like all of the special touches and unique styles incorporated into the renovation of #50, not to mention previous abodes, it was another example of divine inspiration. Truly, there is no other explanation.
A whole year after Vince’s retirement, his work in AIDS research was still earning him notoriety, with the release of the book As Real As It Gets by Carol Pogash, a Bay Area journalist and PBS commentator. This book was the result of a few years researching AIDS activities, with a focus on UCSF and its work at San Francisco General Hospital (SFGH), the epicenter of the pandemic. The 19th chapter of the book titled “All Research Is Personal” is devoted to telling Vince’s story, and he is a major player in two other chapters as well.
Interestingly enough, I was mentioned in Vince’s chapter, but not by name … simply as his partner of eight years (at the time), a Christian Scientist. Carol went on to say that, “The nurse (meaning Vince) does not often talk with his partner about his work.” Everyone who knew Vince was shocked by that, they knew as well as I that Vince never shut up! Then Sam, another UCSF/SFGH employee/friend, figured it out. “She said Vince doesn’t talk ‘with’ you which would imply a conversation, he talked to and/or at you. He talked and you listened.”
It was a moot point but perhaps that cleared it up. At the very beginning of our living together, as soon as I got home every evening, Vince would start talking … endlessly. (Remember my previous mention of having had arguments with Vince, during which I never said a word?) At some point getting bombarded as soon as I walked in the door was too much for me, so I asked him to please let me have just a half-hour. Only thirty little minutes to take off my coat, loosen my tie, get some refreshment, and sit down and relax a tad. He allowed that … occasionally.
As the end of 1992 approached, business was still suffering from republican stagnation, but the result of the presidential election was very encouraging. Not that business was even remotely a priority that year. November I had found my way to Kairos House, a support center for caregivers (lay and professional), and I joined a weekly caregivers support group. Sure wish I had gotten there months earlier. About the same time Vince reached out to the Shanti Project for some emotional and practical support. As helpful as neighbors and friends were, they could only do so much, and we really couldn’t do it all by ourselves anymore.
Early in January I finished the exterior of the new bedroom, sans the sliding glass door. For the time being I installed the old back door, newly painted so that it wouldn’t be conspicuous. That was all I could get done before my role as Vince’s care giver became a twenty-four hour job. His health was spiraling out of control, and as if that wasn’t enough to handle, dealing with the health insurance company was my biggest source of stress and frustration; practically begging for the simplest of things. The decisions of medical necessity were being made by entry-level teenage clerks fresh out of high school. For five years I worked for a life and health insurance company, believe me … I knew!
An appointment with the eye doctor in February left us stunned, the CVM had spread to Vince’s left eye and, although it was not said … it didn’t need to be … he was going blind. That is when Vince gave up. His decision was palpable. Despite the ongoing chemotherapy, the CVM was running rampant in his body; not only retinitis, but CVM esophagitis and then CVM colitis. He was spending hours on the toilet because it kept feeling as though he had to go. By March I had to move him to the tiny old back bedroom with a single bed, because it was adjacent to the bathroom, and I started sleeping on the floor beside his bed.
Still the insurance company was not giving me the resources that I needed. The help that they had a legal obligation to provide … after all, they had never hesitated to take his premium payments. Well, Mr Edwards, we don’t want him to use up all of his benefits, because then where will he be? ”THE MAN IS DYING! THERE IS NO POINT IN HOLDING OUT FOR HIS LONGTERM CARE, THERE IS NO “LONG TERM” IN THIS SCENARIO! Sometimes I would get off of the phone and just pace from one end of the house to the other … screaming and crying!
Some miracle happened the first of April, because somehow I became connected with Hospice by the Bay (HBTB). They came to my rescue. A doctor told the insurance company that they had one of two choices, they could give me what I needed to care for Vince at home, or he would admit him to hospital immediately and they could pay that bill for the duration. They finally cooperated … some.
HBTB arranged for a home health care aid for a few hours during the day, so I had a chance to get some sleep in my bed (or at least a chance to try sleeping). They arranged for a nurse to come on a regular basis, to do the dressing changes, manage the IVs and medications, and oversee the morphine. They were working on getting the insurance approval for the rental of a hospital bed.
The first of April Vince’s mother, Chrissie, went into hospice care, so I knew what the family was going through there, especially Cheryl. Yet by April 10th I had to call Cheryl and tell her that Vince was now dealing with dementia, and we were into the final stages. As I said, I knew she had more than her hands full there, but at least I had to tell her. I didn‘t expect her to come. She and cousin Tina (a RN, in case I hadn’t mentioned it earlier) arrived on the 13th planning to stay for a week.
That gave me a few days of relative sanity, and the much needed time to go to the toilet. It had been a week since I had … well … suffice it to say, I had brought a whole new meaning to the term anal retentive. With all that had been going on I had not given the faintest thought to the length of Vince’s hair, or that he hadn’t been shaved in some time. One of the first things that Tina said to him was, “Hey, Vincie, what’s with the beard? You need a shave.”
That night, in the middle of the night, Tina came to get me. “Vince has been in the bathroom for over an hour, with the water running.” she said, “You’d better check on him.” The poor fellow was shaving … well, trying. I tidied things up and told him that I would take care of it in the morning, which I did. His beard was so long I had to cut it down with the electric hair clippers first. Then my regular barber came to the house and gave Vince a proper haircut.
Brian was in town at the time, he too had AIDS but was doing well, and was living primarily on Maui, but made frequent trips to San Francisco. With Cheryl and Tina there, he said I needed to get out of the house. When he arrived we were all in the living room, and when I told Vince I was going to go to the movies with Brian he got very upset. “Why can’t I go?!“ he wanted to know.
Somewhat floored, I sat back down, and Brian thought his mission of mercy was aborted. But after talking a few more minutes, when Brian said it was time to go, Vince had forgotten all about it. We went to see “Forever Tango” and Brian said he didn’t know whether or not I’d like it, but the male lead was a real cutie pie, so he had figured that if nothing else that would keep me distracted for ninety minutes.
Cheryl and Tina were scheduled to leave on the 20th but got a call on the 17th telling them they needed to get home immediately, if Cheryl wanted to see her mother again. They flew out on the 18th and Chrissie passed on the 20th. During Chrissie’s last days Vince asked one morning, “What was my mother so pissed off about? Why isn’t she staying here, is she at the Pavia’s?“ That was the beginning of a number of ”visits” that Vince had with his mother, before and after her demise. There were other episodes of dementia as well. One morning he wanted to know when we were going to play golf. He had never played golf in his life.
At first I would play along with his delusions, but felt dishonest doing so, so then I would just listen and tell him it must have been a dream. I never told him that his mother had died, there didn’t seem to be any point, and I was afraid that in his disturbed mental state, it might have been too overwhelming for him. A few days after Cheryl and Tina had left, Vince stopped eating.
The doctor and I had a long talk on the phone, he trying to convince me that there was no point in starting PPN or TPN (Partial or Total Parenteral Nutrition). In simple terms, he was saying that all it would do is delay the inevitable for two or three days, what was the point? As difficult as it was, I finally agreed, and we just kept him on IV fluids to keep him more comfortable. Then Vince tore out his central line. When they tried to install a new line back at the hospital, he fought like hell. So rather than sedate him, they gave up. Despite being delirious, he seemed to be making his own decision.
When I called Cheryl and told her the latest, she and I had the same conversation that I had had with the doctor, me in the doctor’s role. It is very difficult to know that you are accepting the inevitable and giving up. Next I repeated that conversation with cousin Tina (a nurse) and her brother Bart (also a nurse). During this period Vince would just sit on the edge of his bed, and name all of the fruits that he loved … which was pretty much most of them.
Ever since the day that Linda Johnson (Linda J) threatened to climb over our fence, she was a prevailing presence in our lives, and I don’t know how I would have survived without her friendship, support, and expertise. One day I was lamenting the challenges I faced, saying, “What can I do? I have no choice.” Linda said, “No, you do have a choice. This is your choice.” What a difference that made. It made it easier at times to be able to say, “This is my choice.” rather than, “I have no choice.” Then again, being the man that I believe myself to be, I had no option but to make the choices that I did. I had no choice if I wanted to stay true to my nature.
As far as choices though, Linda J did not support my decision to get a hospital bed, and the way things transpired, she was right. After weeks of pleading with the insurance company, I finally got approval for the bed, and it was being delivered on May 1st, May Day. I never before thought of it until typing it right now … MAYDAY! MAYDAY! It was May Day in more ways than one.
When I awoke that May Day morning I tried to get Vince up and into a chair, to facilitate the bed switch, but it just wasn’t happening. I wasn’t sure what was going on, but despite the fact that Linda J was already planning to come up later in the morning, I called and told her that she needed to come as soon as possible.
In the meantime, the bed arrived. So I pushed Vince’s bed (a single 36” wide) with him in it to the other side of the room, and they set up the hospital bed. The room that was only seven feet wide, so with the two beds there was less than a foot of space to squeeze by to get to the bathroom, but I figured I’d shift him over when Linda J got there, and then move the regular bed out. That didn’t happened.
When Linda J arrived and looked at Vince, I don’t remember if she said, “He’s dying.” But verbalized or not, I knew that that was where we were. I sat on the edge of the bed for the longest time with Petals on my lap, talking to him. Linda was talking to him as well. Then I got up and Linda J and I were in the doorway at the foot of the bed, trying to figure out what to do. In a flash something prompted us to look back at the bed, I don’t remember what it was, but we knew it the minute it happened … Vince was gone. Rather than all of the talking and support, I do believe that he needed to be alone to let go.
The first thing that Linda J said was, “FUCK!” Then she looked at the clock and made note of the time, ever the healthcare professional. After that I have no idea how things went down. People arrived, Linda Pavia, Linda J’s daughter Kelli (who brought lots of sandwiches), Sam from UCSF/SFGH, health officials (who immediately measured and confiscated the morphine), and finally the people from The Neptune Society who would be handling the cremation. When they arrived I went into the front bedroom and sat on the edge of the bed. Sam came in and put his arms around my shoulders while they took the body away. May Day!
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