Posted by Chuck Jackson on October 11, 2001 at 18:57:38:
Many of you have seen my posts on this board, some acerbic, some humourous, some good, some bad. I would like to give the facts about Focal Dystonia. I have suffered from this disease for 10 years. It is an uncurable, neurological disorder that stems from a sector of the brain that controls muscular function. Sam Gnagey pointed to an article in the IM that spells out in medical terms what this condition is about. I would like, with your permission, to put a face to it and tell you what it is like to have it.
I have always prided myself on being a "Blue-Collar" tuba player. Solid and able to play any style well. 10 years ago I noticed a slight spasm in my right cheek anytime I tried to slur around Bb second line to F in the staff. This has grown progressively worse since. I have a terrible time lip slurring in this register and my legato playing is almost non-existent, Rochut's are impossible me to play except down 2 octaves. I have recorded my sound in this register and it isn't pretty. If I tounge I am fine, slurring is about the most frustrating thing in the world. The frustration about this whole matter is that I know how to play it, can buzz it on my mouthpiece, but I can't do it on the horn. No amount of practice fixes it. It is permanant, which is hard to accept.
The mental ramifications are excrutiating. I have literally spent hours slurring from Bb to f trying to figure out what I am doing wrong. I have gone the opposite and tired NOT to figure it out and imagine a beautiful sound, that provided the same results. Those of us who have this soon realize we are not doing anything wrong, our brain cannot process the information and send it out to the muscles. My mental condition was such that I would break out in cold sweat anytime I had to play. As soon as I was diagnosed and accepted the fact that no amount of rest or practice would fix it, I relaxed and found ways to assimilate my strengths to the problem.
I have developed a "trombone" legato that works for lip slurs. I have discovered that I can slur up, but can't come down without my chops falling apart. The only thing is this: you have to accept the fact that your playing will never be the same. It is a work-out to play some day. No matter how good your air is or how sound your concept is, it is out of my hands.
I no longer rely on playing to pay the bills, but work alot. I know my days as a player are numbered. I have to work extra hard some days to hold a note longer than 4-6 beats. I figure I have 2-3 years before I can't play at all. I wish for a cure, but am secure in the fact that I really did nothing to cause this. My heart breaks for all brass players, and others, who are afflicted. If Mr. Deck is, indeed, afflicted, I hope he realizes this is out of his control. It doesn't mean we(all involved) are bad players, just ones that have a debilitating disorder beyond our control. Yes, I still play well, it's just not the same and I can feel the ground slipping ever so slightly more each passing month.
I wish I could be more insightful. This is a terribly hard thing to do, but this is life at it's most realistic. These things happen to everyone, but it isn't World Peace, Brain Surgery, or the events of the past month. It's the tuba. Thanks for reading.
Chuck Jackson