... on the death of my beloved ...part two ... farewell

How do you start writing about the end of someone's life. Is it about the last few weeks, days or maybe the last hour of breath.
My husband, John, was in ICU ( Intensitive Care Unit) for 13 weeks in 1996. The diagnosis was Sepsis with complete respiratory failure. Several times over those long lonely weeks, he had heart problems - arhymia and they shocked him again and again to stabilize it. One visit, they worked on him, zapping him over and over again for at least a half hour. As his acknowledged companion, I had Power of Attorney for Health Care and had signed a "do not resuscitate" form, but that didn't cover the trauma they inflicted on him.
I was lucky to have a very helpful and strong Social Worker who backed me up as being John's "long-time companion", his partner in life. Gay marriage was a fairy tale in those days and I did have a few arguments with a couple of the volunteers at the ICU entry desk, as to why "I" wanted to see John and who exactly "I" was.

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John was rigged up to numerous machines with tubes going in and out of his body. Trachea tube for breathing, tubes for food in and for waste out. Every major organ has some tube into it. Except his liver. That was one of the odd little ironies, was that he drank himself into a coma and in the end, his liver was the only thing working right.

His kidneys had shut down due to the medication for Candide infection. If he had recovered, he would have been on dialysis for the rest of his life.  They had been able to have John lucid and out of coma for a few days at week 11. At that time we had his best buddy come in as witness, Cam Tolton, and we had the doctor sign the forms so I could be Power of Attorney for Household bills and such.  With that little piece of paper signed, I was able to access John's bank account and pay off the hydro and water and phone bill. Those companies did not let me do any extensions when I had contacted them before. It was very frustrating and scary. Worrying about losing your lover and your family home at the same time.

I was also able to arrange to move funds so I could pay the funeral home. While I had the chance I took it and pre-arranged everything so when the time came, I could focus on my beloved and the life we shared rather than worrying about bills.

The time finally came when the doctors told me and my "sister-in-law" Joyce Williams, John had contracted another disease / infection from the hospital. He came into the Emergency Ward with one infection and would be leaving here with three. With that announcement, Joyce, as Executor of the Estate, finally gave me permission to let John die.

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They had good reason and knowledge of his situation and could have terminated his life support two weeks into his stay in ICU. But Joyce was determined to give her baby brother every chance she could. Even though it included medicine that killed his kidneys and the trachea tube that reduced his chances of getting off the respiratory machine the longer he was on it.

For the next few days, I arranged for his buddies and friends to come by for the final goodbye. John had two or three visitors a day before the notice. But that swelled to about one an hour when they were told that John's time had come. I gave the nurses fair warning since they like to keep the ICU calm and quiet for the other patients.  I got a lot of support from them and from the other patients' families. We would go out for coffee to get a break from the stress of ICU, and to talk about other things.

The funeral was all arranged with visitation the day before, flowers and a rent-a pastor.  John would be buried in the family plot in Havelock, Ontario and that was under Joyce's control.
John stopped going to church about a year prior when one of his dear friends, Norman MacBeth, passed away due to AIDS. He said, "Norman was a sweet little church organist who wouldn't hurt a fly. Why did he have to die from this disease?"
John had been going to the funerals and services for his buddies passing away from effects of HIV and AIDS, but he called it quits after Norman died.

 I sat beside my John, holding his hand while he friends and extended family came by to say their goodbyes. One of the visitors was future Senator Nancy Ruth ( she was known as Nancy Ruth Jackman back then), who was a longtime friend of John's and mine and a supporter of my artwork. She had recently had to go through what I was facing when she had to end life support for her Mother "Don't blame yourself for killing John. It is the best thing for him. He would not want to live this way."

I never thought of it as "killing him". There were times I was so angry at his alcoholism and what it did to the man I loved and cherished. When John and I first met, he was my boyfriend. Then, as time progressed,  my lover. My companion. My long-time companion when that phrase became popular in the media.
And by the time the alcoholism robbed me of my companion and left remnants of a shell of a life, he became my beloved.  He was past anger and fear and resentment. This is what is left for me to love and he is and will be my "beloved."

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We arranged for the termination of life support to be on October 16, 1996 starting at 6:00pm. John would have been 57 and 3 months old that day. The ICU ward he was in was emptied of the other patients. Of all the patients and families I met those 13 weeks, only one got better. I saw him two days prior in the hospital elevator. He was a double-lung transplant. He complained about the pain and the click sound when he breathed, and I just smiled and said, "but you get to escape." I don't think he understood what I meant, but his wife nodded her head and smiled.

The room was still as we waited for 6:00pm to roll by. The day nurses dropped by to give John's hand a little squeeze and gave me a hug and some, a peck on the cheek, The Social Worker who stood by me defending my rights as a spouse to this wonderful man, was there with me and the nurse who would be administering the medication to end his life.

We had arranged for his gay cousin, Don Marshall (related to the Barlow / Williams side of the family) and partner, Don Ball, to help me get through this. We had originally planned for them to visit and say hi and then off to dinner,  but when I got the right to let John die with dignity, they agreed to be part of it all.

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At 6:00pm, the nurse disconnected John's trachea tube. He gasped for air and clutched my hand strongly and then lessened his grip. He settled into a slow quiet little whisper of breath.  She then administered the first injection of morphine to help ease John into the other life. All his other tubes were still attached and I desperately wanted them gone so I could see and be with the man I loved, not this jumble of wires and tubes and flashing lights and monitors.
At 6:30pm Cousin Don and  Don arrived. The delay was due to bad traffic and difficulty parking at the hospital. We hugged, shared a little cry and then  sat quietly and waited for John's time to come.

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At 7:00pm, the nurse checked John's monitors and he was not going anywhere, it was very low but stable, he was breathing on his own. She administered another injection of morphine into his IV tube.
And we waited. Conversation would drift around to what Don and Don, both teachers,  were doing in school. Who visited John the last few days. What was planned for the funeral.
I was told by Cousin Don to "hush up" about this since John could hear, even in a coma. During those 13 weeks, I had encouraged visitors to talk directly to John as if he were awake and to try to avoid talking about negative things like mortality and such. I made a little slip up. But I was tired.

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At 7:30pm, my bladder was ready to burst. I excused myself to go down the long hall to the washroom. After peeing, still in the washroom, I took out a stick of gum and unwrapped it, and joked to myself.
"What if John goes while I am unwrapping this stick of gum?"

I opened the door to go back into he hall and there was Cousin Don.
"Where have you been, his numbers have been going down every since you left."
We walked quickly to the room. But just outside the door I whispered to Don not to say anything and to be very quiet so John couldn't hear us enter.
I looked in from the hall. His monitor was showing lower numbers than when I had left to go pee. But as soon as I walked into the room, they all started going up. John didn't want to hurt me by dying in front of me. He was still trying to show his love for me, even now.

For the next half hour I held John's hand and told him it was OK to go. I talked about all the people he would see in heaven, his Mom and Dad ( whom he adored), his buddy, Bob Whelan, the director, who was the first of many of John's friends to die of AIDS.  As the list grew longer, my words of encouragement and love for the life we had together wove a wonderful tapestry filling the room.
John passed away at 8:00pm - two hours exactly after the start of this part of his journey.

I held him tight in my arms, angry at all the wires and tubes. "I don't want to hug all this stuff, I want to hold my lover!" I cried, and the monitor beside the bed sounded the flat-line sound. All was quiet.
No one said a word.

And then the monitor sounds a heartbeat and breathing!

"Don't toy with me, John. Don't do this to me!" I hugged him even tighter.
The nurse, who was crying, quickly shut off the monitors and screens.
"It is just electrical impulses, it doesn't mean a thing. Your friend is gone."

I gently put John back down on his bed and kissed his forehead. I looked around and we were all  in tears. I thanked my social worker for all her hard work and shook the hand of the nurse. I hugged Cousin Don and his Don. We walked out of the room in silence and went home to plan the next few days.

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The visitation went well. Joyce was on her best behaviour lamenting the loss of her brother. I held my own and was touch by the gentle kindness of John's friends who treated with respect as the widower or widowed companion.   I even got to have a single yellow bud rose for John to hold onto. He was dressed in his favourite outfit. A brown tweed sports jacket with elbow pads, and crisp blue jeans and a white oxford cloth button-down shirt. I had one of his favourite rings on his finger - a sterling silver one made for him. In his pockets I gave him five dollars in bills for any heaven taxes he had to pay, and included his Metropass bus pass. So he could get around in heaven.

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The funeral was a blur. I sat in the front row, being the spouse of the deceased. Joyce and the Barlow / Williams family sat in the row behind me. John's buddy, Cam Tolton came through with flying colours with his eulogy for John. He had the audience of 500 in the chapel laughing and crying at the same time. He reminded us of John's brilliance and how he worked so hard to help Canadian Film in Canada and abroad, as well as promoting the upcoming influence of gay and lesbian directors and writers.

The rent-a-pastor spoke politely about John and what was relayed to him about his life. It was a brief Anglican service and made us feel that John was in a better place.

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I was not aware of the tradition of the receiving line outside the chapel.  I missed out on seeing all of those who wanted to pay their respects at the service, but not able to come to the wake.

After the funeral, Cousin Don and Don brought me home to set up the wake for John.  

I was going at it in full Martha Stewart Fashion, with ready-made hors d'oeuvres, using the cluster of exotic lily flowers I bought for John's visitation. We had about 50 people come by the house. I played the host right up to the end. Just like in the parties John and I held over the years - the good years.

After a few hours, the visitors soon dwindled away, the Cousin Don said their goodbyes and promised to call the net day. It was just two film maker friends of John's left. They were going off to the premiere of the film, "Lilies" directed by John Greyson. I asked if they would take the floral arrangement to the showing so John could be there in spirit. They thought it was a wonderful idea. 

I learned later, after the film presentation, they spoke to the audience about the meaning of the floral arrangement and John and gave him a standing ovation.

I was left alone in the house to ponder my future. There would be bills to be paid. Creditors to be notified. Dealing diplomatically with Joyce who controlled how the estate. Doing my best to start creating memories that I would carry with me.

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It has been eighteen years since John died. I visit his grave in Havelock once a year. One of the reasons I moved from Toronto to Peterborough was to be closer to him. The pain of his death is still with me. It has changed and mellowed and drifts about but is still there. Your love doesn't change, it just gets filed away and pops up when you react to something and think "John would have liked to have seen that."

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But all in all, you deal with life and hold onto the good bits and put aside the bad ones. John truly had transcended into a different level of existence. He was and is my Beloved.

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