I was feeding my son Van this morning when my mother called to tell me my friend Ken's obituary was in this morning's paper. I didn't know he had died although it wasn't a complete shock. He had been sick for most of his adult life with cystic fibrosis. Lately, things had taken a turn for the worse with the hospitalizations becoming more frequent and serious in nature.
Nine years ago, I was editor of Providence Monthly magazine. We were always getting unsolicited submissions, most of which weren't very good (neither was the magazine at that time, to be honest.) Someone sent in a bunch of made-up "Letters to Santa" from well-known Rhode Islanders. Greg, the guy who started the magazine, and I laughed our asses off as we read the letters. We published them in the December issue. That was how I first met Ken. He wrote those letters.
Ken was a funny writer with a sense for the outrageous and a strong sense of fair play. He didn't understand cruelty. He and I got along well and usually met at Cafe Zog on Wickenden Street or some other coffee shop. He usually lugged around a notebook, filled with various scribblings.
He was quiet, but inquisitive behind those big bushy eyebrows. I was surprised to learn that he had played in a couple bands. It didn't seem to fit his personality. I was more surprised to learn he had cystic fibrosis, the disease which would eventually kill him. It didn't manifest itself in any obvious way, although there were times when Ken struggled to catch his breath. He was hospitalized frequently with respiratory conditions that could be potentially deadly to someone with his condition.
He went down to part-time at his United Way job, and then eventually had to leave because he was having such a hard time breathing. Earlier this year, he tried to get on a list for a lung transplant. He was too thin and had to gain weight to become eligible. Over the past year, he spent most of his time in the house that he shared with his brother. It wasn't by choice. He just couldn't be exposed to other people who might be sick. Also, he had to lug oxygen with him everywhere.
He had a close call a few months ago. I called the house and his brother told me he was in Rhode Island Hospital in intensive care. I went to see him on my lunch break from work. He was unconscious, on one of those big respirators. His thick hair was brushed back and he was receiving some kind of pain medication through an IV. You always hear that you should talk to people in the hospital who are unconscious. I did for a while, but couldn't think of much to say except,"How you doing, Ken? I'm rooting for you, buddy." The nurse in the room didn't express much confidence that he was going to make it. I cried for a while then left.
Within a week, his brother called to tell me Ken was doing better. I went back to see him in the hospital. He was off the respirator and in a bed on the opposite side of the room from where he was last time I had visited him. He still was on oxygen, but he was sitting up, talking, eating, and reading. Near his bed was a notebook full of his writings.
It was amazing, really. I never thought I'd seem him alive again. I told him how good it was to see him and that it was a kind of miracle that we could talk again. It felt like talking to a ghost.
After Ken went home, I visited him, sometimes bringing lunch. The mission was to fatten him up. He needed to gain weight to be eligible for the lung transplant. He was eating a lot more than he normally did. Still, he was very thin. He only talked about his condition when asked, and then would apologize for going on too long talking about himself.
I took him out to see "School of Rock" about a month and a half ago. I dropped him off at the door of the Showcase Cinema and parked the car. We bought tickets and snacks. The walk to the theater was about 100 yards or so and we went up about five steps to our seats. Ken had to lug along an oxygen tank. We took our seats and for about 20 minutes, I listened to him gasp gently to catch his breath. For the record, he thought the movie was a little silly.
He was doing pretty well gaining weight and had put on about five pounds. Then, things went downhill. I was scheduled to take him to the lung transplant hospital in Boston on December 5, but his brother called me three days before and told me Ken was back in the hospital. His brother said things weren't going well. Yesterday, I called Ken's house from my cell phone and got the machine. I left a message asking how he was doing.
Then, today, my mother called to give me the news. I got the paper and read the obituary. I called the house again, to offer my condolensces to his brother and ask if I could do anything. There was no one home and I got the answering machine. Ken's voice is still on it. He was 44 years old.