Movin' Up by Dr. Judith Schlesinger
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Post No Bills by Joel RobertsMore articles about Joe Ascione
It's good that he's so resourceful, since he's now faced with the challenge of his life: in 2000, Ascione was diagnosed with MS, or multiple sclerosis. He talked about this and other things in our recent interview, as we floated somewhere in the Caribbean Sea. Ascione was playing on the jazz cruise, with a busy and taxing schedule, but he carved out the time to sit down and chat.
Since he can be such an absorbing delight to talk to, I neglected to turn on the recorder when we first started. So we resume the conversation, already in progress.
AAJ: You were in seminary??
JA: Yes, when I was 29. So 15 years ago I spent a year in a seminary, and it was a fabulous experience. I went in thinking "aaah...priest/drummer? Priest/drummer?" It gave me a perspective shift, and just clarified more of the person, the individualand every part of the individual: intellectual, physical, sexual, psychologicalall the aspects.
AAJ: Well, not sexual, when you're a priest...
JA: Yes, but how does one practice sexuality within the absence of? You can have intimate relationshipsnot physically intimate relationships, but deep, meaningful encounters with people. So that was fascinating. I came out of there a lot more peaceful, just as a person, and a lot more whole. It was a great experience. And afterwards, I stopped thinking priest/drummer, priest/drummerit was more like I'm Joe, with a lot more clarity. But the point is after all of the opportunities in that year in the seminary, voluntarily, in the past 10 or 15 years, I've gotten together with different counselors just to chat, and it's wonderful. Just from thatthat was the impetus to check it out. Fascinating. I learned about Maslow, and Skinner, and all these fun people.
AAJ: Psychology is like the blind man and the elephant.
JA: Exactly. Where you grabthat's what an elephant is. The trunk, the back...
AAJ: Yeah. And everybody thinks they know the essence of the elephant, but they've only got a piece of it.
JA: You know, Freud and Jung for years stayed in Ascona, Switzerland. That's my original family heritageI think my name is a corruption of Ascona. When I was a kid my dad said yeah, we're Italian, but on his side, we're really Swiss-Italian.
AAJ: Well, I do want to get into the MS.
AAJ: So... how did you find out, and how has it changed things?
JA: I found out about the MS in about 1997. My fingers were numb, and I thought I was getting carpal tunnel. Something wasn't right. I took some electrode teststhey wanted to test reactions and nervesand I went where the New York Jets and Rangers and Giants go, to some sports therapy place in Manhattan. I'll be damned if I can remember the name of itI probably blocked it outbut they tested me for EVERYTHING and they said, "No, you're fine, go for a couple of months of therapy."
And I did. It felt good, but nothing happened. One day I woke up and now my hands were numb. So I got really scared. That ruled out carpal tunnel. And I don't know what made me do itprobably, you know, whoever's bigger than we are put the little thought in my headand I called Dr. Bob Litwak, who's a drummer in New York City, and also head of cardiothoracic at Mount Sinai.
He's a friend of mine, so I said, "Bob, find me a neurologist," because my logic was, maybe I have a brain tumor. Or a tumor on the spine was hitting nerves. Something with the nerves, because these other people had checked it out and it wasn't muscles.
There were about six or seven major tests for the MS. And it took me eighteen months to accomplish them all, because I was traveling and recording. Then they messed up the spinal tap, and I had to go back, and...
Anyway, I was taking these testssure, put the dye in the brain, yeah, go aheadand I failed every one of them. And when I went to the neurologist's office, I thought he was going to say it's probably no big deal... But he said to me, "Well, you either have cystic fibrosis, muscular dystrophy, multiple sclerosis, lupus..." He went for the top band of neurological problems. Then, when we did the tests, he said, "it's MS."
It was weird. I couldn't actualize it because, aside from just the hands at the time being numb, I was fine. I was still running, playing handball, acting like a knucklehead. It was hard to hear that serious abstract sentence, and taste it. But I had felt it for a couple of years, and then I was diagnosed in the summer of 2000.
AAJ: I hear there's no definitive test for MS. How did they...?
JA: They're getting better at pinpointing it quickly. It wasn't like you go in there and they check your blood or your heart and OK, there it is. It's like a mosaic: they put all the pieces together, and they map it out.
So... multiple (many) and sclerosis (scars). Multiple scars, many scars on the brain. When you look at the brain, there's likeif you make gnocchi, you make these tick marks. I have four of them, they look like little jellybean scarsdink, dink, dink, dink, fourand wherever the brain is scarred, those are the nerves that get debilitated. The myelin sheath gets worn out, and it's a synapse thing, where you're not getting the message from point A to point B. It's like a short circuit.
[ Note: myelin is the fatty covering that insulates nerve cells, or neurons; it facilitates the transmission of impulses throughout the body. Synapses are the gaps between neurons where electrochemical reactions send a message from one cell to the next ]
Then I went to a specialist, one of the top three in New York, about a year later. There are different types of MS, and I wanted to find out what type I have. Turns out it's a less common onemaybe 10 or 15% have it: "primary progressive."
It starts slowlythe fingertips, the hands, the feet, now the arms, and the legs, and other weirdness. My torso had a band of numbness, my optic nerve was seeing double, and then the fatigue, and the wobbliness, and the numbness and the tingling, and all the little fun things that go along with it. My type starts slowly, and you just keep getting worse. Slowly. And it never feels better. You never get better.
Another type is much more commonabout 70% have something called "relapse remitting." Godtheyit's almost like a convulsion, where they get their ass kicked. They could wake up a week later in the hospital, or they can wake up and their legs are crippled, they're on crutches or in a wheelchair. Then it remits, like after a tornadoyou can see the damage, but it's sunny out. And they feel a little better. But some damage can be done.
Consequently most of the drugs out there, the Western drugs, are trying to stave off any of those (smacks hands together, WAAACK!). They wanted me, just for the hell of it, to go for beta-interferon injections, but the jury was still out on my type of MS. Now they're saying yeah, it could help. But I can't rationalize sticking my legs with needles and giving myself the hard-core drugs for the rest of my life, every week. And there are side effects: bone thinning, calcium depletion, hair loss, cognitive problems. And it doesn't make you feel better, and it doesn't cure itthey just hope it slows something down, or you don't have an episode. But since I don't have that type, I'm still not convinced to take the drug. That's why I go to a biochemist, and take 70 food supplements a day.
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