1997: Losing Ed

Ed Norris died about 8:45 am on Thursday April 3rd 1997, a beautiful bright spring morning.

Ed in Green Park, London, 1995

I had been upstairs in the bathroom getting the water and towels ready for bathing Ed before going to work when his mother Miss Addie called loudly from his bedside in the living room. I scrambled down the stairs and found her bending over Ed from whom a rattling sound came with his breathing. “He’s going”, she said. We stood on opposite sides of Ed holding his hands and recited the Lord’s Prayer. I told him it was okay for him to go and both Miss Addie and I started crying. And then he was gone.

We made the necessary calls and then Miss Addie and I both folded in on ourselves in a silent mourning. Mrs Snowden from next door came over to be with Miss Addie and Glen Conrad, a friend and CNA who had looked after Ed periodically, came by to be with me. Our visiting nurse came over shortly before the men from the Stewart funeral home came for Ed.

Ed messing with the stereo at home in Brookland,

In the summer of 1996, Ed had fallen on the stairs at the offices of the DC Public Schools and had ever since had a sore back. For the longest time those two events were connected in his mind and mine. He had had massages and accupuncture and repeated visits to physical therapy and nothing seemed to alleviate the discomfort.

We were in the fifth year of our relationship, living in Ed’s house on 18th Street NE in DC. Ed was the first man I had met who made me want to spend the rest of my life with him.  We had met in 1991 at Mr P’s, a gay bar on P St near DuPont Circle in DC. In midsummer I moved in with him. Our February birthdays were only three days apart and we clicked in many ways.  The year 1996 had seen a great deepening of our relationship.

Ed and I in Sarasota at our friend Jean Lagunoff’s house

By the autumn of 1996, the back issue clearly wasn’t going away or getting better.  Ed’s doctor finally decided to send him for xrays.  Over Thanksgiving Ed was just worn out (being principal of a school in DC will do that) so we had a quiet meal at home with just his Mom and her husband Ike Garland.  About the beginning of December, I think, the xray analysis came home with Ed. It mentioned bone lesions on his spine and his pelvis (where he’d also been having pain).  It didn’t take much research to figure out that this was the effect of late stage cancer.

His doctor scheduled Ed for exploratory surgery at George Washington University Hospital on January 30th. That morning, the three of us were up very early and at the hospital in time to hurry up and wait. Finally, Ed was wheeled down the hallway, leaving us at the door to the operating theatre. We waited hours and hours. Finally, we saw him wheeled out and into the recovery room. His surgeon came up to Miss Addie and I and escorted us into a small office.

The news was devastating.

Ed’s liver was 80% consumed by the cancer, which they thought had originated in the bladder, but they weren’t sure. It didn’t matter. The prognosis was that he had about 30 days to get his affairs in order. There were no recommendations for any further treatment, no chemo or radiation. The cancer was metastatic and had already compromised his colon, a large section of which had been removed and replaced with an ostomy near his navel and adjacent to the entry wound for the exploratory surgery. The extent of the GW Hospital support for us was an “I’m very sorry.” from the doctor.

So we entered on a 64 day slice of misery.

Ed had agreed beforehand that medical students could be allowed to follow his treatment and be briefed on his illness, so he was moved into a single room at the hospital, through which trooped daily a series of medical students and physicians who discussed his “case”.

At first after the surgery, Ed was so groggy and weak that he was largely inert. I arranged with the hospital to be able to spend the night in his room in case he needed anything, sleeping in a chair or on the floor. It was as much for me as for him since I wanted to be near him. At the end of the first week, during which we held a lackluster 53rd birthday party for Ed, he was much more alert.

When the visitors came, he would usually turn towards the wall so he wouldn’t have to see the students staring at him. I remember one time his oncologist came by with a gaggle of students and began talking about Ed’s case. The oncologist made a remark about “they” and “these people”, clearly referencing Ed’s race, and Ed rolled over and looked at the group and said “I’m not dead yet and you don’t get to talk about me as if I’m a lab specimen or not here. Now get out of here!” The oncologist protested and Ed’s voice increased in volume but with the same message. And they left. I was so proud of him! At that point he needed every victory, no matter how small.

About the middle of February, the hospital transferred Ed to the Washington Home and Hospice on upper Wisconsin Avenue. What a nightmare that place was. At the hospital, the staff were always busy but usually efficient and helpful. At the Washington Home, most of the staff were West African nurses and nurse’s aides and markedly unfriendly. Ed and I were “out” and the staff didn’t approve. Nor did the Matron. As I had at the hospital, I often spent the night sleeping on the floor in Ed’s room in case he needed anything. After about two weeks, the Washington Home moved Ed to another ward saying he had been put in the wrong section. The move didn’t improve Ed’s treatment by the staff.

Miss Addie and I took turns being with Ed at the Home. I was, of course, still working and had a daily 45 to 60 minute drive from DC to work five days a week. So, Miss Addie stayed with Ed during the daytime and went home when I got to the Home after my day at work. She dealt with the daytime indignities and I dealt with the nighttime ones. As I drove back and forth between work and Ed, I often was overwhelmed with misery and sadness. I couldn’t believe how quickly we had descended into this misery and I frequently dissolved into tears as I drove. But that venting of my misery while I was alone in the car meant that I was better able to deal with the face-to-face crises and to be cheerier and more useful when I was with Ed. I did go home to our house in Brookland occasionally to change clothes and get things that Ed might need. But neither Miss Addie nor I wanted to leave Ed alone to face the challenges of the Home alone.

Neither of us knew much about the medical side of his care and we depended exclusively on GW Hospital and the Home to manage such things. Mistake! After about five weeks at the Home Ed begged to go home to Brookland. He couldn’t take any more of Washington Home’s treatment.

So we arranged for a hospital bed in the living room, a commode and a bed pan, and all of the bits and pieces we would need for caring for him there. The Home arranged for a visiting nurse to be scheduled for regular visits and I called on a friend, Glenn, who was a certified nurses’s assistant to come by regularly and help, at Miss Addie’s expense. Miss Addie let Ed’s son and ex-wife in Pennsylvania know that he was ill and going to be moved home (they hadn’t come by at either the hospital or the Home). And one day in mid-March, we moved Ed home. It was too expensive to move him by ambulance so I just put him in my car and drove home. The visiting nurse came by the next day.

And her visit was a revelation. She did the usual tests and set up a schedule and then she took a look at Ed’s catheter and asked in an outraged voice why no one had changed the tubing. Miss Addie and I hadn’t paid the catheter any mind but the nurse pointed out how cloudy the tube was because of the mold growing in it. It occured to me then, that I had never noticed the tube being changed during the five or so weeks we had been at the Washington Home. Well, it was changed that very day by the nurse. She also took samples for testing and tested Ed as well. The upshot was that he was septic, because of the dirty catheter tubing!

We had brought Ed home about the end of the second week of March and his decline over the next three weeks was steady. He would rouse and be conversational for a while and then peter out and fall asleep. We tried watching videos at night a couple of times but he just couldn’t concentrate and would fall asleep. One day, when colleagues from his job had dropped by Ed was being his usual garrulous self and insisted on having Kentucky Fried Chicken, though he was mostly on liquids by then. So I went out and drove across NE DC to get him a three piece meal. He really couldn’t eat it but he could taste it and that was all he wanted!

By the end of March he had lost so much weight that he was emaciated and some visitors wondered whether he had AIDS. But it was the cancer eating him up.

On the last Sunday of March he and Miss Addie decided that he should have a priest come and give him the last rites. He had been largely comatose until the priest began reciting the Lord’s Prayer and Ed joined in vocally.

And then, Thursday morning, April 3rd, he was gone — thanks to the cancer and the sepsis. And I was alone with a big empty house.

Published by Mark Meinke

Married gay Quaker and historian, retired, and working more than ever.

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