Community with and around the dying

In 1994, Timothy died of AIDS at age 27. For some reason, now, 16 years later, I find myself thinking of him often. He was a profoundly gifted young church organist and recitalist. He and I worked together for 6 years-as organist and music director, respectively. We spent a lot of time together in the last months of his life. It was during that time, long before I ever thought of becoming a Benedictine Oblate, that I began to understand community. Sometimes illness is a good teacher in that area. The following is an account of a particularly memorable afternoon. I offer it with a prayer that someone else might find hope in illness, and a new awareness of community with those who share in their day to day living…and dying.

I brought Timothy to the church on the afternoon of Sunday, June 5. He had played his last church service on March 20, and had not touched the organ since. He was, for all practical purposes, completely blind, a common symptom of the late stages of the disease. He was very weak, but could still walk if we guided him. It was a very hot day, and he found it difficult to breathe.

I picked him up a little after 2:00. His Daddy and his Mother were both with him at the apartment and we were all excited about the outing. Another friend had taken him to get his hair cut on Friday, so we were all confident that 1) he could do this, and that 2) it would be good for him. Neither of Timothy’s parents offered to go with us, beyond “Do you need me to go?” Timothy did not seem inclined to have them along and I was just as happy to have some time with him alone. Both parents seemed relieved to have a little time off.

We loaded up his I.V. in the backpack and took a good supply of paper towels for him to spit into—he was coughing up clear fluid. We took him a jacket. He wore a pair of pajama-like blue and white striped pants–huge wide stripes, and a T-shirt. I turned on the car to let it cool before we brought him out. He was surprised and frightened by the blistering heat. He was relieved to get into the car, where he felt around for the A. C. vent and aimed it into his face.

As we drove, I described the day, the crepe myrtles, the familiar landmarks along the way. It was a glaringly bright day, but he said that it looked to be very cloudy and dark to him. I described our approach to the church; there were cars in the north lot–people preparing for Vacation Bible School, which was to begin the next day. I pulled into the south lot and parked as close to the door as I could get. I led him to the door, got it unlocked and we went into the building.

We made it up the stairs and to the organ console without incident. He sat down on the bench and immediately asked for some kind of cushion. He had no natural padding left of his own after months of wasting. I got him a pad from one of the chairs near the altar. It was not very soft, but it was enough.

I left him, to go and turn on the air conditioning, sorry that I had not thought to do it ahead of time. When I returned, he was tentatively choosing stops by feel and playing bits of things. I sat down in a choir chair by the organ and told him how good his playing sounded. It did sound good, even without his being able to see, and his relative clumsiness after two and a half months away from the instrument, a time of progressing illness including two hospitalizations.

He wanted me to remind him of the passage of time since the previous Fall. He could not remember much since his recital in Washington, D.C. at Thanksgiving. I talked him through the Christmas season, the early part of the year, his last Sunday in church, his time in the hospital, and the significant events in the lives of those around him–weddings, a new baby born to friends, trips taken by his friends to various places, and so on.

His playing still held that unique character that his playing always had held. From the first time any of us heard him play, there was enormous strength in the music. He had honed his technique during graduate school years, and that had only clarified the sound in his playing that made us all to know that it was only at the organ that he was truly at home. That sound came to be home, or at least a part of what home is, to us.

Hymns were best; maybe it was because we could, and were supposed to, sing along. He interpreted, stylistically and even with registration, each hymn line by line. I can’t remember exactly what he did with the “flowing fountain” in “Glorious Things of Thee are Spoken,” but I do know that because of what ever it was that he did on those words, I am now able to sing them with understanding. Not that I didn’t understand those words before, or sing them consciously; it’s just that now I sing them with a larger, or deeper, or something, understanding. Like when the Bible says “Adam knew Eve” you know that it was a different, better, way of knowing than the way he knew the hyena.

Bach was incredible too. Bach was friendlier when Timothy played him than when most other musicians play him. Yo Yo Ma plays Bach like Timothy played him. Bobby McFerrin sings Bach that way; Glenn Gould played him that way. Again, it is a character of knowing. That character is in the playing, connecting the listener to it, and so repairing the break in the line from the voice of God, through composer, time, instrument(s), performer, and space, to the listener’s ear.

And then, of course, there is the rest of the repertoire that Timothy played. Even pop songs played on the piano displayed the same character of knowing.

For a while he just wandered in an out of things: wedding pieces, Langlais, Bach, hymns. In the middle of something, I can’t remember what, he began to cry. He did not stop playing though. His I.V. appartus was on the bench beside him on the side closest to me, so I walked around to the other side and crawled on the bench with him. I put my arm around him and I cried too. Cynthia came in pretty shortly. I saw her out of the corner of my eye, but I didn’t acknowledge her presence and I don’t think Timothy ever knew she was there. She went out as quietly as she had come in.

He listened to every stop on the organ, commenting on the beauty of each, or sometimes the lack of it. When he ran out of things to play, I started requesting things, mostly hymns. Tears ebbed and flowed. He stopped playing at one point and began to sob. I held him as he talked about how much of his life was in the music and in the Church. He said that his happiest memories were of the part of his life that he had lived in and around this church. He said frankly that if he couldn’t play, there was no point in living. I tried to argue, but my arguments were feeble.

He played a few more hymns and listed again to a few more favorite stops. He was tiring. We’d been there over an hour. He began saying things like, “Well, I guess we might as well go.” I assured him we could come back another day. We never did.

7 thoughts on “Community with and around the dying

  1. What a gift you gave him, Rick! Both the music and the friendship of beauty and tears. A life-changing moment! Thanks for sharing; it brought tears to my eyes just reading it.


  2. catherine cleary

    Your esay is splendid, I feel as if I knew Timothy. He looks down on you and is grateful for this concert! Yiour descritions of his playing make the music heard in my ears. Catherine, OSB


  3. I’m a Hospice nurse and I loved this story.


  4. I like the awareness of his playing with a way of “knowing” the composers and their music. It’s a vital memory to share–builds up and extends the community of which he was and is a part.


  5. Ric, as I read your story, i could, in my mind’s eye, see every step you took, that beautiful organ, and yes, even hear Timothy playing. I am reminded again of what a wonderful spiritual mentor you were to me for many years.


  6. Ruth, I’m glad you found the posting and I’m thankful too for your continuing presence in our family’s life.


  7. Ingrid, Thanks for your encouragement–and even more the stories you live out every day of your life.


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