I have some very sad news to share with you. Our friend Brother Paul (palembic) has been diagnosed with Creutzfeldt-Jakob disease. He is declining rapidly, and there is no cure.
Creutzfeldt-Jakob disease (CJD) is the general form of a protein folding malfunction that affects the brain, with about one case per million people each year. Often thought of as Mad Cow Disease, the human condition resulting from ingestion of contaminated meat is actually a subset known as variant CJD, and is responsible for only 5-10% of the cases (and usually among younger people). It turns out that over 85% of CJD occurs spontaneously, with no known cause.
So while we don't know for certain at this time, it appears there is no one to blame - and we needn't speculate here on Paul's eating habits, European agricultural policies, and so forth. It just is.
This has all happened quite rapidly, which I suppose is about the best we can make of it.
Sometime in mid or late December, Paul phoned one night and said that while rehearsing for a gig, he found he was unable to hear the beat. With encouragement from his band mates, he managed to get through the gig anyway, largely by resting his foot on a drum stand so he could at least feel it. As you can imagine, he was quite unhappy about this, but it didn't seem particularly alarming. He also started having some occasional problems with balance around the same time, fairly minor at first, which also suggested some sort of ear problem.
But his hearing tested fine, and his balance problems worsened to the point where he was told to stop driving, and take some time off work. He had a brain scan in the first week of January, which appeared normal - no tumor, for instance - so they admitted him to the hospital for additional tests. Several of these came back negative, and there was a bright moment on the 17th - he phoned again, excited about the fact that for the first time he had been able to snap his fingers along with a recording of his Blues Stuff band.
Even so, he almost sounded sedated, and a friend who had visited in person the day before said he looked even worse than he sounded, having lost a lot of weight and barely able to move around without assistance. They finally made the diagnosis on the 21st.
We can't know how much longer it will be - probably a few weeks, and not more than a few months. At some point he will slip into a coma, and it won't be much longer after that. For now, he still knows people and takes comfort from having friends and family in the room. As many of you know, he loves to talk, and between gestures, examples, and switching between several languages (wherever he finds the words), he manages. But blurring and double vision prevent him from reading, and he is no longer able to handle a conversation by phone.
He knows. And in fact, he seems to be accepting it quite a bit better than the rest of us.
Some of you here in the SF Bay Area had a chance to meet Paul last March at a local Alembic gathering. It was his first trip to the states, and he had always dreamed of being able to visit SF in particular. His eldest daughter is currently in a one year post-graduate law program at Stanford, so he came over again in October and we spent a great two weeks together. He was supposed to visit again for a week in May, to attend graduation, but it seems I may have to fill in for him.
Personally, I'm glad he had a chance to make it over here, and even more thankful that I had the privilege of sharing a few weeks of life with him. On his first visit, he proposed that we buy a case of good wine, which I would save so that we could share a bottle on each of his subsequent visits. We were having such a great time with other things that we didn't quite get to that, and by the next visit neither of us really felt like we could indulge the expense. But we were certainly looking forward to many years of good times together.
My computer, where I'm writing this, happens to be in Paul's room, and I expect that's how I will think of it for quite some time. Coming from someone who has pretty much lived alone for a decade, and at times been characterized as a bit of a recluse, the fact that I looked forward to his visits - and always wished he could stay a few more days! - says a lot about just what a wonderfully warm, kind, and joyous human being he is.
After I got to know him well (by phone) several years ago, I used to joke with him that his TBO (The Bad One) signature really stood for The Best One. He made me promise not to share that with the group, but it is how I will choose to remember him.
Peace, my friend. I shall miss you, and from time to time, over a glass of wine I know you'd enjoy.
-Bob
