The Hourglass On The Table

In the fall of 1995, I held my first training as the newly hired Speakers Bureau Manager for a new group of HIV-positive speakers at Cascade AIDS Project. Eight hours a day, for four days, over the course of two weekends. A training not unlike the one I myself had gone through when I joined the Speakers Bureau as a volunteer in January of 1992.

This group of new volunteers was large and diverse. I was proud that our recruitment efforts had succeeded in bringing in a group representing youth, elders, newly infected, long-term survivors, men, women, gay, straight, bi, black, white, Native American, Asian, Hispanic. There was a young married couple, Eric & Amy - serodiscordant (ah, you don't know that word, do you? As mom used to say, "Look it up in the dictionary."). Julie, a twenty-something Native American from Eastern Oregon. Robbie - a lively, spit-fire of a woman who took that energy and knew how to channel it to become a very effective speaker. We lost Robbie this past December. Another reminder that AIDS still takes those we love.

And there was Paul. Paul didn't add to the diversity of the group. He was what everyone expected a person with AIDS to be.... thirty-five years old. Gay. Thin & wasting a bit. Even had a mustache like so many gay men who came of age in the late-seventies/early-eighties. Holding onto that lip-hair like a vestige of his youth.

Spending all that time with this amazing group of people, it was inevitable that I'd come to know them well. Part of the training was about vulnerability.... they'd be asked to share some of their most intimate stories in front of audiences young and old. They'd be asked questions none of us would dare to ask in polite conversation. And we prepared them for that. In doing so, a bond grew among us.

But there was something about Paul... although he didn't stand out in the group. Wasn't the most powerful speaker. Didn't have a story that was shocking or captivating. He was the underdog though. And I've always rooted for the underdog. And in the coming months, his story became mine to tell.

As I came to know Paul, I learned his partner of many years had just left him. Couldn't handle his illness or face the pain of watching him fade away into the darkness of death. Didn't want to be the healthy one forced into becoming a caregiver for his sick lover. So he took the coward's way out. And left Paul alone. And I mean truly alone. As many people do during illness, Paul had become reclusive and shied away from his circle of friends - wrapped his whole life up in with the one person he felt he could count on. The one person he wasn't afraid to be vulnerable in front of. And when that person left there was no one. His family hadn't spoken to him in 17 years - not since the day he told them he was gay. His friends had given up trying to contact him... probably thinking he'd already passed away. Yep, when his partner left, it was just Paul and his dog, alone in that condo.

I couldn't bear to see someone so alone in this world and would often reach out to Paul just so he would have someone to talk to... so his phone would ring. I would invite him to a movie or to dinner to get him out of the house for something other than a doctor's appointment or a speaking engagement. Sometimes I would just go to his place and he'd cook me dinner and we'd lounge on the couch by the fire and put a movie in the VCR, curled up under an afghan. Over time, I began to join him on his visits to his doctor or his case manager and came to know them... and came to know the truth of his illness. Paul, as strong as proud as he tried to be, was dying. Quickly. He wouldn't show it. Not to me or to them. But blood tests and lab results don't lie. And no matter how much he avoided the topic with me, his medical team would tell me the real story. And somehow, I became his emergency contact. He had no one else. So I accepted it... I had no other choice.

I was only 25 years old and in many ways still a kid. But I'd seen sickness and death already. Far too much for anyone. But that's what we faced back then. I'd been part of a team of caregivers during the last days of someones life. Did all those things that we do when someone can't do for themselves. But this was different... I was the caregiver. I had no idea what I was doing. So I leaned on someone else to help support me help guide me through this. Tom hardly knew Paul... they'd gone on a date or two about a decade earlier. But he was a good friend of mine. And he was older; had more experience in these things. And compassionate. A former priest, he brought a sense of making sense to all of this.

One day, early spring, the four of us got together without Paul... his doctor, his case manager, Tom and myself. I wanted to share with them the things they couldn't see in the blood tests or lab work. And the things Paul wasn't telling them. He was sleeping 18 hours a day. His mind wasn't always there... he was forgetful... disoriented... couldn't keep track of his medication schedules or doctor appointments. He'd fail to show up for speaking engagements no matter how I tried to set reminders for him. His home, which in the past always shined brightly, had become a shambles. Lawn overgrown. Dishes piled in the sink. I'd stop by just to make sure his dog was fed. And that he was too. Paul refused to believe he was dying and kept telling me he had ten years left. So we decided to meet with him and confront him with the truth.

Telling a man who refuses to believe he's dying that he doesn't have long to live is painful. For yourself and for him. We scheduled it during my lunch hour and the four of us sat with him to ask him to begin the process of preparing for the end. He fought us. It was a very long hour and for the first time ever I heard a doctor say to someone, "You have six months left... if you're lucky." There were no tears. But there were some raised voices. Some fighting back. In the end, we got him to sign two papers which started the process and prepared us all for the inevitable. He signed the Medical Power of Attorney designating me to make decisions on his health care should he be unable to. And he signed a Power of Attorney designating Tom to make decisions on his estate and financial affairs. We'd also asked him to think about changing his Will because his ex-partner was listed as the beneficiary and we all knew he didn't want him to get everything. But he said he'd do that later. Maybe it gave him a little hope to think he had something left to do... one decision not yet made. Maybe he just felt there was no one else to list as a beneficiary. Or maybe he did still love him.

After our meeting, I returned to work. But during those hours ticking away that afternoon, I could think of nothing except Paul sitting at home alone having just been blindsided by the truth of his illness. As soon as the clock struck 5, I hopped in the car and went straight to his house to just... well, just to be there for him so he'd know he wasn't alone.

As I turned onto his street, I saw an ambulance parked in front of his house. As I was parking, I watched as they wheeled Paul out on a stretcher, oxygen mask on, eyes barely open. I picked up his puppy and held him close as I asked the EMT what happened, where were they taking him. They knew little. Just that he called 911 because he couldn't breathe. I wrapped up things at his house, called Tom, took Paul's dog to my house, and we met at the hospital.

At the hospital:
Tuesday:
Paul's lying in a single room with a respirator on. Doc's say he has PCP (pneumocystis carinii pneumonia). They're treating him with Pentamidine and his prognosis is good. He's sleeping. We sit. Waiting.

The sun sets. Paul doesn't wake up. We leave.

Wednesday:
We return after work. Paul is groggy but awake. He's still on a respirator. He talks a bit. Still having trouble breathing.

I stay until visiting hours are over and head home.

Thursday:
Again, back to the hospital after work. Paul looks good. He's sitting up. Eating. We talk lightheartedly but also revisit our lunchtime conversation from a couple days prior. Tom and I mention we'd like to bring his lawyer in the next day to look at his Will. Paul agrees to a meeting. I tell him he needs a shave and put a mirror in front of him. We all get a good laugh at how frightened his dog will be if he comes home looking like that.

Friday:
The lawyer joins us on our evening visit. Paul skirts the issue and, in the end, decides he wants more time to think about what revisions he'd like to make to his Will. The lawyer leaves.

The doctors say Paul could go home today but they'd like to wait 24 hours while they use the time in the hospital to treat him for a bad case of esophageal thrush. We all agree. I shave Paul's face before leaving for the night. My little way of getting him ready for his return home the next day.

Saturday:
There's a voice mail when I wake in the morning. The hospital called in the middle of the night. Paul had a reaction to the treatment. He's in a coma. I don't know who gets to the hospital first... me or Tom. When we're all there, we talk with the doctor and Paul's case manager. Yes, he may come out of the coma and improve. But chances are slim he'll be out of the hospital long if he gets out at all. They listed off a number of infections he was fighting and his complete lack of an immune system. They recommend stopping all treatment. Letting the diseases run their course. I had medical power of attorney. He was in a coma. It was a decision for me to make. I said I wanted to think about it.

I stayed the night. In a chair next to his bed. I didn't sleep much. If at all.

Sunday:
Paul is still in a coma. After Tom and the doctor arrive, I consult with them. I sign the papers to suspend all treatment and only provide pain management. They remove all the antibiotics and other IV's. Place a bag of morphine in their place.

Ten hours later, Paul wakes up in horrific pain. The nurses increase his morphine drip. His body is being attacked. Viruses. Bacteria. His lungs are filling with fluid from the PCP. His brain is being taken over by the Toxoplasmosis. The yeast is growing, unabated, throughout his intestinal tract.

I stay the night again.

Monday:
I call into work. Paul's no longer in a coma but the nurses say he's got enough morphine running through him to numb an elephant. That's the analogy they used. An elephant.

Tom and I talk about what to do about his family and his ex-partner. He hasn't spoken to his family since they disowned him 17 years before when he came out to them. They don't deserve to see him. I don't have the right to keep them. We decide we have to call. Have to let them make the decision.

It's mid-afternoon. We call his ex. He had moved up to Washington. He will be down as soon as he can. We found his mother in his phone book. He kept her number there... don't know why. I call and discover it's her work number. I explain who I am and tell her I'm at the hospital with her son. He's dying. Would she like to come say goodbye? She says, "Well, I'm busy with work this week. The soonest I could be up is Friday night." He doesn't have 'til Friday night. She says, "There's nothing I can do. I'm just too busy." I leaver her with the name & number of the hospital and the room number. I say goodbye and hang up.

Two hours later she calls the room. She states she was able to move some things around and she booked a flight for the next evening. "Do you need someone to pick you up from the airport," I ask. No, she says. She's bringing a friend and they're renting a car. His father isn't coming.

Around midnight, Paul sits up. It looks like he's pantomiming. He seems distant but alert. I ask him what he's doing. He replies, "Eating a ham & cheese sandwich." He's hallucinating. The morphine has taken over.

My third night sleeping in this chair. It's uncomfortable. I leave for awhile and go to the visitors lounge. There's a loveseat there and I sleep for and hour and a half. Maybe two hours. Middle of the night, I'm back in the chair, watching Paul sleep... if that's what you can call it. I write in my journal. I don't have it anymore. But it was something about pain. And love. And how it's love that makes you want it to end. The pain. Knowing there's only one reason it will.

I doze a little in the chair.

Tuesday:
Paul hasn't eaten in nearly four days. Well, nothing except that imaginary ham sandwich. His already emaciated body is... beyond life. Skin on bones. Nothing more. But he's breathing. And his hearts beating. His scent. It's... different. I notice it as I swab his teeth with a tooth sponge. Close up. His breath in my face. It's almost sterile. Like the smell of hospitals. Is that scent sterile? Or is it....

Tom relieves me for a short minute while I go home and shower. Stop by work to check on a few things. Make sure my roommates are taking good care of Paul's pup. I'm gone for two hours. Maybe.

The sun sets. The room is dark. Tom and I are playing cards. Chatting. He's sharing the story of how he met Paul and of the date they went on a decade ago. Neither of us know how we wound up sitting in these seats. How no one else has come by to visit. The room is dim. Just that small fluorescent reading light above Paul's bed. A sliver of light through the crack in the door. Until it opens... letting in light. And a silhouette. A middle-aged woman... broad. No step-classes for this one. Permed. Her ratty curls backlit. I can't see her face but I hear her when she says, "Oh, my poor baby!"

What the hell? Did I just arrive on the set of a soap opera? How melodramatic can you be woman? She rushes to his bed... doesn't touch him... just stands over him, looking down for a moment but only a moment. Then turns to us and asks how his dog is doing... who's taking care of him.

I say he's fine. He's at my house and my roommates are watching him. She says, "I always liked Buster."

I inform her that Buster passed away twelve years ago.

Tom could see the anger surfacing in my face. He stepped in and said he & I were going to leave her alone for awhile with her son. We went to get dinner. Somewhere away from the hospital.

When we returned, she was sitting in the chair reading a book. She stood and said she was tired and should go. Asked if I could give her directions and a key to Paul's place so she could stay the night. We'd prepared for this... figured one of the only reasons she came was to see what she may inherit from him. Tom and I told her no, we weren't comfortable with her staying there without anyone so she should get a hotel. She wasn't happy.

That night, I dozed in the chair again. Until the shouts woke me. Paul had ripped out his catheter. Was climbing out of bed. His IV torn out, bleeding everywhere. No need to push the nurses call button. They'd heard. They were there in an instant. We all talked him down. Helped him back in bed. They did their nurse things with IVs and catheters. They upped his morphine. Enough to kill a man. That's what they said. There was no higher they could go.

Wednesday:
I'm tired. I sponge Paul off a bit. Run some water through his hair. Swab his mouth again. Feed him ice chips but they're no help. His lips... cracked, dry, peeling. His eyes, half closed, vacant. Head tilted. New nurses come in. I chat with them since I hadn't met them yet. The one leading the show is ex-military. I can tell. He changes the sheets in a regimented fashion. No care or worry that there was a living person on top of them. No, he did no harm. Didn't hurt Paul. Hell, Paul couldn't feel anything anyway. No, it was just a routine for the nurse. Flip this, pull that, hold this, roll that. Like a worker on an assembly line. I missed the nurses from the previous shift.

Around nine, visiting hours started. Paul's mom arrives with her friend. We have the smallest of small talk and she brings up Paul's house again. Wants to go see it. It's her son, she has every right to... blah  blah blah. The doctor and the case manager are there. Tom is too. Someone recommends we all go out in the hallway to discuss. So we do. But they're adults. I feel nothing but anger. So I go back in the room and leave the four of them outside the door to figure out all that crap.

I look at Paul and talk to him. Tell him I'm sorry I invited her. I hope he understood why I felt I had to. I held his hand. Watched him breathing. Nearly lifeless. But still breathing...

Wait. Yes, still breathing. But.... less. A pause has developed between breaths. At first almost impossible to notice. Then hard not to. I started counting. Chest up. Chest down. 1-2-3. Chest up. Chest down. 1-2-3-4-5-6-7-8. Chest up. Chest down. 1-2-3-4-5-6-7-8-9-10-11-12-13-14-15-16-17. Chest....

I stood up, opened the door, interrupted the little debate in the hallway and to this day i remember exactly what I said..

"It's happening."

A hush came over everyone as they walked back into the room.

Chest up. Chest down.
1-2-3-4-5.........32, 33, 34, 35...
Chest up. Chest down....1, 2, 3.......47, 48, 49..
Chest up. Chest down....1, 2.......112, 113, 114....
Chest up. Chest down.... 1, 2, 3.............

The doctor moved toward the bed. Made the declaration. The room was silent. Numb. I looked around and asked if I could read something. So I lifted a candle I'd kept lit for Paul these past few nights and I read that poem I wrote in my journal. Then, I blew out the candle. Set it aside. Looked at him. Relaxed. Finally. The pain really was gone. There was almost relief on his face. Or comfort. Yeah, that's what it was. Comfort. And I crawled into bed next to him. Hugging him in the softest, strongest way I knew how. I laid there for ten minutes, just snuggled up against him. Tom had started crying when I read from my journal. Paul's mother... well, she had a mist in her eye. That's something I guess. Then, I stood up and the doctor left the room and said we could have as much time as we'd like.

As soon as the door closed behind her, Paul's mom looked at us and said, "Well, I guess it's time to start talking about the Will."

I was infuriated. I looked at Tom, then said I needed to go for a walk. He was the adult. He handled the details. And I... walked. Walked outside. Fresh air. People. Moving. Landscapers mowing. Highways bustling. Babies, newborn, being carried out. Legs. Casted. Wheeled to their cars. Life. Carrying on.

It was that moment I realized that death is a part of life. I was only 25 but I'd seen it before. But not in this way. Taking that step away from Paul for that moment made me realize that the world keeps turning. Someone's passing is just as normal as someone stubbing their toe. Nothing out of the ordinary.

But much more significant than a toe-stubbing. For I came to realize something else. The second most important moment you can ever be there for someone is the moment they move on... they transition out of this life. The first of course being the moment they come into the world. And here I was. There for Paul. When no one else was. No one else would be. And, although I'm sure there are a few who sometimes think about him... wonder where he is or recall a memory of him... none had the experience I had to hold his hand on that day.

Paul, I may not be much... but 'til the day I die I'll always be holding you close. And never closer than that week I ride. If I ride for anyone, I ride for you. And when I arrive in your hometown of Santa Cruz on Sunday night, maybe... just maybe... I'll see that broad woman with that bad perm out there holding a sign begging for forgiveness.