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organ console   In 1985, while Jan and I were living at Minonk, Illinois, I read an article in the Bloomington Pantagraph about a skilled organist who drove himself in an adapted van back and forth thirty miles to Illinois Wesleyan University. There he played the organ and instructed students, which was remarkable because he was partially paralyzed due to ALS, and he had been dealing with this progressive disease for sixteen years after his diagnosis. To my surprise the subject was my friend Philip, whom I had not seen or talked to since 1968. I had no idea what had happened to him, but I had a clue to why he had seemed to disappear.

I called the only listed number bearing his last name and it belonged to his sister Mary, with whom he was living. She was cordial as I explained my connection to her brother from years ago. She said she would tell him I called, and I left my number. Soon Philip returned my call and enthusiastically invited me to come to their home.

Their home as well as his van was well-equipped to accommodate Philip and his wheel-chair. A ramp circled the back room entrance, which was centered around a large electronic organ console. After we spent an hour catching up on how we had both spent the last seventeen years, Philip demonstrated his project of recording music and adapting organ consoles for people who needed a manual pedal and recording arrangement like himself. He was in touch with several disabled organists, and he was convinced that instruments could be adapted so that their skills would not be lost. His ministry had been redirected, but he had not lost his desire to serve.

Over the three years that followed, we visited every two or three months. He continually tried to accept and adapt to the limits that his disease imposed. He had been able to slow the progress of the disease and work with the disabling effects, much like Stephen Hawking, and he was not quitting. He chafed at having his choices increasingly limited. He sought ways to have new choices, and in that search he proposed that he come to Minonk and investigate the possibility of living there independently.  I would have to drive his van, since he knew that the miles were more than he could drive, along with the regular daily tasks of self-care he had to manage. He had to return to his home with Mary by evening. He had already made arrangements to see an apartment in the local subsidized housing.

We made the trip, introduced Philip to my family and church, heard Philip play the church organ beautifully, visited the apartment, and got him safely home. He would think about what such a move would mean, although sister Mary was clearly not convinced that it would be wise. Nor was I, since no one I knew could provide the assistance that he would need in the future as well as his sister, but I was not ready to close that option if he chose it.  I was not able to persuade the congregation to share the duties of church organist, if Philip decided to come, although the faithful eighty-year-old organist, who had served the congregation for over forty years, was reaching the limits of his abilities as well.  At the end we all decided the move wasn’t a good choice, but I was glad that I had not simply rejected the option at the outset.  

Philip and Mary both expressed disappointment when I left Minonk for Burlington, Iowa, but I promised to keep them aware of our progress there. Our visits were fewer, but we stayed in contact. Philip suffered a heart attack and other disabilities as the years passed, and ALS paralysis took its toll. He died in 2002, after a few months in a nursing home. Mary, who had retired as a public school music educator in order to care for her brother, died in 2008. Few people have opened so many doors to understanding for me as these.

 

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