I have Amyotrophic Lateral Sclerosis (ALS, or
Lou Gehrig's Disease) and I want to tell what that has been like for me... For a
long time I debated whether to write this. A lot of it is very personal and I'm
not sure that just because I've played guitar on a few records I want everyone
to know what my life is like. I decided to write it for a number of reasons: For
one, there are many people handicapped in one way or another, and maybe I can
inspire them in some way to feel better or to do more than they thought they
could. For another, maybe if people know what some handicapped people go through
they will feel more comfortable with them or at least be aware of them. Also, I
have received many extremely nice letters which are very personal and I'd like
to respond in kind but I'm unable to write.
One night in May of 1989 I was lying in bed
sleeping when I awakened by an intensely painful cramp in my left calf. I'd had
cramps before but this one didn't go away for the rest of the night. When I woke
up the next morning that spot in my calf felt very tired an lazy. I thought it
would go away but it stayed. I went on tour with Cacophony, then went to Japan
to perform by myself and then left the band to do my own music, all the while
with this lazy feeling in my left leg. In November when I moved to L.A. to play
with David Lee Roth I decided, "Oh. what the hell, I might as well go to a
doctor and check this out." so I went to Kaiser [medical group] and they did a
few tests: pushing up on my foot to see if it would twitch, watching me walk,
plus some electrical tests. After they were done, two doctors came in with ral
sad faces and said, "Well, we're not sure but we think you have ALS, a nerve
disease." They told me some people have it for 10 years, some for five, but that
you never can tell. That info sort of went in one ear and out the other. The
possibility of dying just wasn't even in the realm of reality. I had just joined
Dave's band and I was going to be the rock guitarist. That night I called my
parents and nonchalantly said, "They say it might be some sort of werid disease
- no big
deal." They thought
it was a big deal.
During the next few months I started limping
very noticeably and my father moved to L.A. to live with me. I took test after
test after spinal tap after MRI exam. I had to change my diet from Big Macs to
healthy food, and learn a million cover songs and new songs for Dave's band. All
that time I wanted to write more songs but didn't have the time or energy. But
all that didn't matter. I still was having the time of my life and making money
playing guitar - what could be better? It was also frustrating though, because I
couldn't be as much of a creative influence as I kenw I could have been under
other circumstances. I remember not wanting to let people know how bad it was
and I didn't believe it myself at the time. I wanted to be a pro in every way. I
remember getting a spinal tap, being in total pain, having the worst back, head
and neck aches imaginable, with pain so unbearable it brought tears to my eyes.
I went to practice anyway. I got a muscle biopsy on my right leg and that made
me limp on both legs. But with all this pressure I was still having great
fun.
I was very lucky
to have lots of support nearby. I moved across the street from my grandfather,
Wayne Heffley, who is an actor. He played Vern Scofield on "Days of our Lives".
He was a great pal to have around and he helped me take care of my business so I
could concentrate more on music. My friend Miko was also always there with any
support I needed.
In March of 1990 we went to Vancouver to
record the "A Little Ain't Enough" album. By then I was taking 100 vitamins a
day and shooting B-12 into my leg, which I couldn't do myself. Steve Hunter (who
played some rhythm and slide guitar) did it for me every day. My limp was
getting worse. My left knee always felt lazy and I didn't have much strength.
When I walked on it it either snapped backwards or forward. I always felt like a
clumsy geek, wobbling around all the time. Don't get me wrong - I was having the
time of my life, but I never really felt like me. I was very happy and lucky to
have Steve there. We hung out together, ate together, went to the gym and talked
and jammed. He taught me a lot. He bandaged me up when I tripped over myself.
C.C. DeVille was there in Vancouver recording with Poison and he was very kind,
too. He thought a pair of air-pump shoes might help me walk better so he bought
me a pair of $200 Air Jordans. It was always strange in clubs around there. If
someone would accidentally bump me a little I would stumble or fall and people
would say, "get that drunk out of here" and I couldn't say anything. Or if we
were going on stage to sit in or play at a club I would be so worried about
keeping my balance that I would play very mediocre and people would think,
"That's David Lee Roth's new guitar player?" It was very weird in the recording
studio as well.
As the weeks went along I needed lighter gauge
strings and I always wanted to play the guitars with the lowest action, which of
course always sounded the worst, and I would get razzed (and I would raz myself,
too). One day I was recording the acoustic part to "Drop in the Bucket" and no
matter how hard I pressed, it wasn't hard enough. I barely got it after a while
and I went in the back room and noticed that opening and closing my left hand
was difficult. I cried. It also took me a long time to record all the guitar
because my creativity level was way down. Back then I wouldn't have admitted it
to anyone or even to myself because I always like to think I could overcome
anything and be a great musician.
When I got back to L.A. there were a few
months of nothing to do. My left hand was getting weaker. I recorded lots of
4-track tapes so I could remember the things I could play and the ideas I
thought of. On the one hand I knew I was getting worse, although I didn't know
that "worse" was because I didn't want to look up statistics on ALS and find out
what they sound was going to happen; on the other hand, I reaslly believed that
I was going to be better, it was just a matter of time (I actually still believe
that). I started walking with a cane after much resistance. I took an
experimental drug for a while that made me walk better for one week and then
made me sicker than I've ever been and worse for two months. So I had to stop
taking that. I spent my 21st birthday on this drug, in pain and in
bed.
When we finally
went back to audition a rhythm guitar player and a bass player, my legs would
shake when i stood up and played. I couldn't do it. I could tell my playing
wouldn't last on a tour so I had to move back home to the San Francisco Bay
Area. In those last few months guitar companies really wanted me to play their
instruments. I would have endorsed Ibanez but everyone and his sister play
Ibanez and now I see why. Peavey made me a good guitar and they hounded me
constantly to play their guitars so I thought they would want to do something
special, and they did. I was uneasy about my guitar playing and told them I
couldn't do clinics or I might not be able to play at all and they said they did
not care. After we made a verbal agreement and I posed in pictures with their
guitars I never heard from them again. I don't mean to bad-mouth anyone - I
think they make good equipment - but I'm just telling what it can be liked when
you're handicapped. No one wants a depressing image.
In January of 1991 I recorded the Bob Dylan
song "Meet Me in the Morning" for the Guitar Recordings label with Steve Hunter,
Bret Tuggle, and Matt and Gregg Bissonette. I was so nervous because my hands
would shake sometimes when I played and I had to rely heavily on the bar for my
vibrato instead of my fingers. My playing was maybe at about 50 percent. It took
a long time but I am still happy with the sond. Steve Hunter's producing helped
immensely. Around this time Steve Perry [of Journey fame] called me. We mostly
talked about my ALS. He was very kind and easy to talk to. We were going to get
together to jam one day. I brought my guitar and had a bunch of ideas but was
nervous about my weak guitar playing. He could sense this so he just took me out
to lunch and to a movie. He made me feel very comfortable and at ease. He had to
help me in and out of the car because my legs shook so much. We talked a lot
about music. The way we feel about our music is very similar. We are both very
technically advanced musicians and even though we both always have played from
the heart, we still are maturing musically. He now continues to be a very good
friend and inspiration.
In May of 1991 I went to the Huggins Clinic,
where they take all the mercury fillings out of your mouth. I think it was a
great place. I met many cool people and I lot of the things they gave and taught
were beneficial but I did not get rid of the symptoms. I met a woman named
Cynthia Hughes who had been diagnosed with ALS and was pretty far along but then
she got her fillings out and was perfectly fine! So I would recommend that to
anyone even though it didn't work for me. I tried other things, too, nut they
didn't seem to help me either.
A benefit show for me was held in June of
1991. When my friend Lori Barker thought of doing the benefit for me I didn't
want her to. I thought it was embarrassing but she got it together anyway. I
thank her much for that. it did raise money and that helped a lot. I wish
everyone with ALS or any crippling disease could be as lucky as I am. Again I
must thank everyone involved: all the technicians, instrument companies,
musicians, "GFTPM" magazine, and everyone. It was a very sweet
thing.
By that time I
was walking very slowly with two canes. Around that same time, or a little
before, a friend of mine named Mike Bemesderfer set up a computer for me and
taught me how to use it with a keyboard. Mike is a very talented musician. He
plays flute and a Yamaha windcontroller. The tones he gets on his Yamaha sound
similar to an awesome guitar tone, comparable to Allan Holdsworth only more
aggressive. His playing is nothing short of awesome and breathtaking. Anyway,
his lessons on how to use a computer made it possible for me to still create
music, because by this time I could not play guitar without my hands shaking and
without having physical pain and strain. I had many ideas that I couldn't do
without the computer, so it truly was a lifesaver.
Around July or August I reluctantly started
using a wheelchair. Then in October of 1991 I finished writing my new album,
which will be out soon and which I'll tell more about here later. I recorded
almost all of it with my right hand because I lost use of my left hand and arm
before the right one went. That was a very interesting time because I felt great
in a way, still being able to create music, but at the same time it was
physically hard to do. It was a strain to lift my arms so it sometimes took
hours to get a simple idea down. I would work for 10 hours a day and then be
exhausted the next day. It also was interesting writing in a completely
different way. Almost all of the music came to me, obviously, without a guitar.
Ideas seemed to come out of nowhere.
When I actually had to figure out the notes I
heard in my head I pictures them on a guitar but they didn't come from playing
guitar or thinking of the guitar, the came from my mind of my heart or God or
somewhere, which was a really new and neat experience. Instead of thinking of
the guitar part and learning that, I heard whole orchestral pieces in my head -
already finished- that I just had to learn and program. When I finally finished
in October my goal was to put as many real musicians as possible on it and pay
for everything myself. I got some recording done but I started to see that I
wouldn't be able to afford to make it sound beautiful rather than
"computer-like". Also, it is very different from anything Mike Varney has ever
done before and I wanted to reach more people. I wanted to inspire as many
people as possible in good ways so I wanted to spend lots of money on promotion.
Mike Varney is a great person who always has supported me in doing what I felt I
needed to do, musically or otherwise, and this was no exception. I owe most of
my career opportunities to him.
In January of 1992 I was talking on the phone
with someone to whom I had never talked before and my voice got really weak and
it was all I could do to pronouncesyllables. I was really scared and freaked out
when I got off the phone. People with diseases have do deal with things like
this constantly getting worse. In my case my brain is compltely normal as well
as my thinking snf my feeling, but little by little my body keeps going away. At
this point I was in a wheelchair and I couldn't feed myself anymore because my
hands weren't strong enough to hold the silverware and my arms would shake when
I raised them. Also I couldn't bathe myself, brush my teeth, walk to the
bathroom when I needed to go, or any of those simple things that I used to take
for granted.
I am normally very good at staying positive
and being happy because I am happy and positive by nature and always have been.
Even though I have this disease I still think I'm really lucky in many ways. But
there have been times when I've wondered why this was happening. I never took
drugs or smoked cigarettes, I only drank alcohol a handful of times, I'm a nice
guy, and yet I couldn't move or take care of myself. And now my voice was
getting weak and hard for people to understand. It made me very nervous. I
didn't want to be just inside myself having no form of communication; that's
hardly an ideal situation. It also doesn't feel good to see the people you love
give up their free time or their lives to take care of you, even though they
want to.
Fortunately for
me, the money I made in Dave's band along with support from family and friends
made it possible for my father to quit his job and take care of me full-time. My
parents always have supported me in every way. My father, Gary, is an artist. he
taught and gave me the passion for creating. He puts his life and art second to
my every need. He is my biggest inspiration and one of the great painters of the
world. My mother, Pat, inspired my positive side. What she gives me makes it
possible for me to still enjoy life - but most importantly, she introduced me to
Jeff Beck's music. I am lucky to have my parents, brother, girlfriend, uncle,
grandparents and friends who care for me and love me. I know of many handicapped
people who are all alone and don't even have enough money to pay strangers to
take care of them. It's really sad and it's not their fault but yet it's like
pulling teeth; they are made to feel guilty when they need to get money from the
government or insurance companies.
My physicaly feelings were forcing negative
thoughts into my head. I began to wonder if I would see my next birthday or the
next Christmas or Super Bowl. These weren't good or healthy thoughts but, as
with anyone in a difficult situation, there were times when there seemed to be
nothing to hang on to; when no matter what I did, things kept getting worse.
Then my doctor told me about an experimental drug test that had done some
healing on a rat's nerves. He got me very psyched about it and said I could take
it in six months. For half of that time I began doing a dumb thing: I counted
each day, always looking at the calendar. After eight months the doctor told me
I was ineligible for that test, which really made me feel like shit, as I'm sure
it did many other patients. It may not have been his fault, but it doesn't help
to have hope dangled in front of your face and then pulled away.
Just as in any profession
there are cool doctors and butthole doctors, and I have had both. Doctors and
hospitals should try not to be so negative and depressing. Many doctors are
strictly statistic-oriented. They ask the patient, "Has this awful thing
happened to you yet? Has that horrible thing happened yet? Because it will, you
know". They don't realize that their comments put fear in a patient's mind and
actually may help make the bad thing happen. Doctors can either bring you up or
bring you down. Many doctors have the attitude that "You're going to die, you
can't get better" when there are countless cases of miraculous healings. When
healings happen, some say, "Well, it must have been a misdiagnosis." If they
don't know what causes ALS, how do they know what it is? I have a friend named
Vahid who is a healer and knows many people who have been healed through
meditation and faith. He believes so strongly that I can do this that he helps
me any time I want it, free of charge. he also helps anyone elese he believes
in. This automatically helps me to believe it and stay strong. Some doctors
don't realize the effect their words
have on patients. No one - unless his name is God - can tell you that
you will die. No human has the right to say that. Warnings are necessary but
they never seem to tell you about the miracles that happen and the handful of
people that do heal and live for years.
After having ALS
for about 2! years I thought about death for the first time and I figured out
that it's not death that I'm afraid of - everyone is going to die sometime. I'm
sure something nice or something to learn will be there. What I was afraid of
was leaving behind the people I love. I have read books about miraculous
healings and I continue to meditate, visualize and work out. I had the idea that
if you did A,B and C you got results. It didn't seem like I was getting results
- not on a physical plane, anyway. When I remembered back to practicing guitar
it seemed that I practiced and then got better and that's how it happened. But
there's more to it. There's patience, luck and faith. I found myself asking
people, "How much should I do this? How much should I do that? What stuff should
I eat?" and expecting a result after that. No one can really give an answer,
which I didn't realize until I remembered back to teaching guitar. Students
asked me how often they should
practice to get good. I always laughed at that at said, "However long it
takes, of course!" Some people spend an hour a day and get great and some people
spend 12 hours a day and never improve. The only answer is "However long is
takes." And I had been asking the same questions about this. How long should I
meditate? Well, however long it takes is the answer.
After that phone call I mentioned earlier, I
got nervous about talking on the phone and I felt that no one would want to be
with me because they would have to constantly care for me. I didn't want to give
my friends chores. I did not feel that I was worth it. I wouldn't talk to great
friends. I wanted people to know me for who I was; I didn't want them to have to
work to hear me or be with me. When I would finally see someone like Marty
Friedman, Steve Perry or Richie Kotzen, I wouldbe so nervous and harld talk and
I wouldn't talk to them on the phone at all.
In March of 1992 I went to get some therapy
called "self-healing body work", developed by a guy called Meir Schneider. It is
a really great therapy that requires a lot of effort on the patient's part. By
doing this, many people have gained movement they had lost. Serrana, the
therapist who worked on me (and still does), not only helped slow my condition
down a little but she became my girlfriend. Before this time I definitely did
not want a girlfriend; I did not feel I was worth anyone's pity. I did not feel
that I still had anything to give - she showed me that I did. It was nice for me
to learn that some people can see past the disability. She became and continues
to be a source of fun and a reminder that I am still a fairly normal
person.
Around September
of '92 my breathing and swallowing got worse. It was very hard to suck air into
my abdomen and when I swallowed I had to be careful not to choke. Each swallow
became nerve- racking. ALS is a motor neuron disease. That means the neurons or
nerve cells that stimulate the muscles don't work, so the muscles begin
disappearing. I have lost at least 30 pounds from the neck down, and my voice is
very hard to understand.
Whatever problem you may have in life, you can
choose how to react to it. Don't listen to what the world thinks will happen to
you. What your own mind expects and wants is what you can have. Keep the
confidence, creativity, humor and faith in yourself and in life. This helps
me.
Now my record is nearly
complete thanks to my friend Pat Mapps, who is funding it, and many other
wonderful friends and musicians. In fact there are some pretty incredible
musicians on it. There are three long symphonic pieces with a full orchestra of
nearly 100 violins and cellos, brass, woodwinds, bells, harps, and piano. One
has electric guitar as the solo instrument, played beautifully by Michael Lee
Firkins. Initially, I was very bummed out that I couldn't play on this song
because it is probably the best song I've ever written, and I wanted it played
with my feel. He did a perfect job of blending the feel I wanted with his own
style. I'm not bummed anymore. There are two drum pieces with foreign flavor.
Matt and Gregg Bissonette play on these. Also, Steve Perry sings/chants and
plays percussion. He really added a lot. He is extremely creative. It is a kick
to hear him sound so different. There is also a choir piece sung by the virtuosi
section of the San Francisco Girls Chorus that came out beautiful, and at least
three pieces that I recorded with guitar on 8-track before I got this disease,
which will be surrounded by new, real musicians. Other musicians include my
friend Mike Bemesderfer, playing wind controller and flute; Steve Hunter on
guitar; a great pianist named Danny Alvarez; a
tabla player; my father and uncle on guitar; my
brother Ehren (who is in a cool Bay Area band called The Jenny Thing) on bass,
and some other orchestra musicians whom I haven't met yet. It is very
interesting and there is no question that it is the best thing I've ever written
or recorded. I have never heard an album quite like it, with as many styles on
it. It is heartfelt, unique and aggressive, yet gentle with a huge sound like a
movie score, not "computer-like" at all. I am normally very uncomfortable
talking about my music, but I don't feel uncomfortable in this case. It all came
out of my hands and head and I feel close to it but it came to me in such an
unforced way. I am always excited as a listener as well as the
composer.
I have just started a therapy called
chelation. It removes lead and other heavy metals from the system. It's funny
how fate works, how things seem to happen when they should. My friend Elizabeth
has a computer program called Prodigy, which is hooked up to computers all
across the country and has access to lots of information and subjects. She found
a letter from a guy with ALS who tried chelation, gained 30 pounds and got rid
of his crutches. Around that time I received a letter from a chripracttor/fan
and friend named Stewart Zwiekoft, who always sends me information and
contributions. Because of me, he has turned into an expert on ALS and he
suggested I try chelation. He thinks there might be a connection between the
combination of exposure to lead and having a virus, such as chicken pox, at a
late age (which I had) and ALS. I tried it and the first treatment made me feel
really good. My muscles and joints are normally very tight and they cramp alot
but this first treatment got rid of some of my cramps and loosened me a little
bit. I can't wait to see what the other treatments do for
me. Anyway, that is my story. I hope I didn't sound too
whiny, obnoxious or arrogant. I have been thinking about writing this for a
while now and the more ALS has taught me, the more I wanted to share. Anyway,
thanks for reading this and by all means, enjoy life and be a good
person.
signed, Jason