Posted on Facebook - September 9, 2017
In regards to my last post from September 8th...
For those who don’t know much about me, I just whipped off this short version of what I deal with… It might seem lengthy, but really is the short version... (this is not edited)
I woke up with a cold on September 9 (1993) after the Fall Tour kick-off show the night before. As I said, it progressed into the flu by the end of the month when we were in Boston. That was the loose thread that got pulled as my body started to breaking down quite rapidly.
I had given blood and had other tests done along with the x-rays when I went to the hospital straight off the plane from San Diego. I went to the hospital because I thought I had a broken toe and something else was also wrong with my foot as I couldn’t really put any weight on it. I saw several doctors and baffled ‘em all there. After seeing 6 different doctors, they brought me to the office of a specialist to make an appointment with him. It was just about Christmas holiday time, so I couldn’t get in til mid-January.
Over the Christmas holidays my body just said, “Fuck it!” and completely fell apart. I could hardly stand up. When I want to move around I had to hop on my left foot or crawl. I was too sore to sit, too sore to stand, and too sore to lie down. The shittiest part is that I was also too sore to sleep.
(That is when my journey into a different dimension of exhaustion began. I have only slept one full night through since that ’93 holiday season. I average about 4 hours of broken-up sleep a night when I am lucky. I have been through times like a 9 month stretch where I could only sleep 15 minutes twice a day. I was in so much pain I couldn’t let anything touch me, including chairs or my bed. I’d have to stand there for 23 ½ hours a day, often collapsing to the floor from the exhaustion and inability to hold myself up, but too much pain to sit down or crawl into my bed. When I would collapse like that I would get stuck down on the floor…too sore get up. Aside from dealing with the impact from hitting the floor, which inevitably made things worse, my dilemma from there was that the longer I was down there the worse it hurt, and the worse it hurt it was harder to get back up. I’d try getting up and pain would knock me back down. I didn’t like being stuck on the floor like that. The kind of toll that that takes on your body is quite fascinating. It is truly not a measurable or comprehendible thing. I have exhaustion laced in my soul and body beyond thought. It only gets worse with time too.)
When I saw the specialist in January he told me I had a rare specific kind of arthritis called Reiter’s Syndrome. He also said there was no cure, and that I would be like that for life, so get used to it.
I’m trying to keep this short, so needless to say, I was tripped the fuck out! I had only been 20 for a month, and I didn’t want to feel like that for another minute let alone the rest of my life, but that is when the journey began.
Since that fall of 1993, this is what has happened…
I have three different kinds of arthritis:
-Reiter’s Syndrome (1993)
I have nasty arthritis in every joint in my body…even my face and skull, jaw, etc; as well as all my tendons and ligaments. (They are supposed to be like elastics or whatever, but mine are hardening and solidifying, which is why I am so rigid lookin’.) My right hand is also a different kind of fucked. (The rheumatoid one)
Outside of my arthritis shit that hits everywhere in my body I also have osteoporosis, mystery stomach issues, and a currently a hernia that they fucked up last year and is now even worse. I have damage to my ears too, but that’s my fault.
Music is the only thing that didn’t hurt, and is the thing that has kept my sanity together. Aside from that I love it, everything happened on the Grateful Dead tour: the cold, the flu, and the changes after that. Their music has been such medicine for me…the only thing that has felt good. I don’t get to go on vacations from my pain and exhaustion. It’s there every second of every day…even in my broken up sleep. I have taken a lotta flack for the depth of my love of the Grateful Dead’s music over the years, but my connection with it is directly tied into the pain and collapse in my body and the only medicine that makes it a bit better.
(I’ve never understood why people give me shit about that. I mean…it’s only fuckin’ music, who gives a shit what someone likes and doesn’t like!)
I’ve spent year’s worth of my life bed-ridden. I’ve been on a cane. (which was a great thing for an air guitar) I’ve had to crawl instead of walk. I’ve choked on my food when too sore to swallow. I’ve almost suffocated with my mouth open because my body can freeze in pain making my lungs unable to function to let air in and out. It hurts my skin for clothes to touch it. My kidneys hurt. My liver hurts. My bones hurt. My muscles feel all ripped and torn. (Like proper pulled or torn muscles…I have had those through my athletic life. If you know me well, you know how much fun I make of all the pansy-assed professional athletes who sit out for those.) It hurts me to breathe. It hurts to go through the motion of eating and swallowing. My ears hurt. Then there are all my joints, tendons and ligaments, plus the fusion and thinning of my bones.
There is nothing on my body that doesn’t hurt inside and out…and then you lace the indefinable exhaustion within all of that. Through everything, the thing I hate the worst of all is the vicious headaches I can get from involuntary screaming in pain so loud from shots of pain from outta nowhere. (I feel like I have drunken down a few lakes worth of water from all the times that had happened when I am swimming.)
Between Western and Eastern natural and allopathic medicine, I’ve seen well over 200 healers...Specialists, Therapists, Technicians, Nurses…all that shit. I’ve been a guinea pig from the start because no one has seen anyone like me. When we were looking at my x-rays once, one of my chiropractors told me I deserved an award for how messed up I am. (I miss seeing her. She’s awesome! )
Through all the therapies and shit, I’m the guy that when something works on everyone, it doesn't work on me, so I just toughen up and roll with it. I could never count the times I get told, “I don’t know how you do it,” but what people don’t understand is that all the pain in my body, that’s the easy part. I just wanna go out and play.
(Above three photos by Phil Best - September, 2015 - www.bestphotos.ca)
I’ve left people mystified when I have done things like the 81 triathlons/duathlons I did in under 4 months through brutal hypothermic and frozen conditions while working full time. To me, it was nothing though. It was all limited and fractionalized to me because I couldn’t do it in a strong body charge the way my spirit knows how to. I have skied for one season since 1992. It was when I worked at Whitewater in 2008/09. It was kinda fun to be on skis again, but even when I was skiing through waist deep powder, which was a lifelong dream of mine, it was still boring because I couldn’t throw myself off of cliffs and huge jumps. I likened it to having to surf in a wave tank on the beach at Pipeline while all my friends were out in the ocean charging the fat waves. Who wouldda though skiing in waist deep powder could be such a mental torture?!
sleep with movies on so they take over my dreams, because if I sleep in silence I virtually always dream about skiing off cliffs, leading triathlons, tearing up a hockey rink, or dunkin’ balls…feeling great…then I wake up into my reality saddened in my soul that I don’t get to do that, instead I am just gibbled and fucked.
The big things I do that inspire a lotta people are nothing to me because it’s all just falling short of what could have been. Sure, that might be the wrong way to look at things, but it’s ingrained in me and will never leave. As long as I have breath in my body, I will be a gnarly-ass athlete lookin’ for the next intense thing for myself; but no matter how epic it may or may not be, it will always be falling short of what I know I have inside me if I only had the chance. That’s where the real pain lives, and it is in a place that transcends anything my body can throw at me. My body has robbed me of so much, but when it gives me a little window, I’m divin’ through that fucker and goin’ for it the way I can carrying the weight of a fractured heart on my shoulders while I do.
Stuff Writin' About Kinda Guy
I am a simple guy who likes to dream of the impossible and go after it. I have found fun in writing about my journey as well as other things that inspire me too.