If you’re reading this, I’ve already left Planet Earth for who knows where. (unless I publish this too soon by mistake–My tech skills may not be up to par and I apologize in advance for that–Ha!) I sincerely hope there is a heaven (“Hi, St. Peter,” if my Christian/Catholic friends turn out to be correct!) and that I get to meet Zappa (again!) and Hendrix in person, but maybe there’s just nothing. Even the Bible says: “Ashes to ashes; dust to dust” and this would seem to imply that there is no afterlife. Or life could just be a giant computer simulation (thanks, Tim!) and the motor neurons in my hard drive got fucked up a little early somehow…
If you know me personally or have read any significant amount of my blog, you know that freedom was one of the highest values I held. I think I was born with it hard wired into my brain, and I discovered this at age 4 in kindergarten (and I posted a story about that of course!) I expressed my love of freedom in so many ways throughout my life in work, friendships, love, and just a WTF attitude in general. Take a chance—”You only live once” was pretty much my motto! I was generally a person who didn’t much care about a lot of artificial, largely self-imposed societal norms that would limit my life, and I was a political anti-authoritarian to the point of preferring anarchist libertarianism to any form of “Red Team”/Blue Team” authoritarianism by those who are constantly fighting over who will get to control the masses at the point of the State’s guns.
The opposite of freedom is fear, and although I had very little social fear, one of my greatest fears in life was the power of the State to lock me in a cage and control me. I had the thought more than once in life that I would much prefer death to a 25-year prison sentence. Of course I completely understand that there is great irony in the fact that I didn’t obey a lot of “the rules” and could have indeed found myself locked in a cage for a hell of a lot longer than the few hours I was actually there! (Read “Fun with the Police—Chapter 2” if you’re curious…) Ironically, I even had fun being locked in the cage for a short while…
But the alternative was living my daily life in fear of the so-called “authority” of the insecure wannabe alpha chimpanzees to make all the rules for me. That’s definitely a master/slave relationship, and I just wasn’t wired to accept a life like that so I simply ignored a lot of “the rules.” Of course, the irony of being imprisoned in my own body by a relatively obscure disease hasn’t escaped me—Life and death are full of the Zen irony of a universe we don’t understand, or maybe my Christian friends are right and I’m being punished for being a “sinner” and breaking some of the rules. But I’ve confessed almost everything good and bad publicly here, so that must be worth something!
That said, I tried to be smart about things and obey the Eleventh Commandment (“Don’t Get Caught!”) as much as I could within the parameters of living a life of relative freedom. But please don’t think for one second that I believed there were no rules for living an ethical, happy and successful life—There are, and for me the oft intertwined values of love, honesty, integrity, kindness, and a spirit of fair play (even with people who made that difficult at times!) were the rules I chose to live by.
I wouldn’t call myself a member of any religion, but I have a strong belief in the Taoist dichotomies of good versus evil and right versus wrong. The Golden Rule always made perfect sense to me as a very real expression of love and respect for others, and although I don’t call myself a Christian, I think that the example of Jesus in the New Testament was also an excellent expression of honesty and love with a definite sense of rebellion against “the rules” of his day. Jesus was a rebel who preached love and empathy as higher values than “the rules” of his day. (And “Jesus Christ, Superstar” totally rocks—It’s my favorite rock opera by far!) I did my best to live by the Golden Rule, and I always felt bad about the times I failed. That’s how you learn, and the faster you learn the karmic lesson that the fewer people you hurt and the more you love, and the happier you are! At least that was my experience in life.
It’s important to me that all of you understand why I chose to end things when I did, so I’m going to do the best I can to explain what I went through on my way out with ALS. I’m well aware that some of my symptoms were not always that visible to my friends, and it may seem to some as though I gave up too soon. You can read about the slow torture of ALS in a few of my posts and there is some in this one too. I know other friends will say that it’s not really my right to choose when I die because that’s up to a god to decide. I don’t share any definite belief in a specific god, an afterlife or any other knowledge about what lies beyond, and it’s entirely possible that there is nothing else after this wonderful (and all too brief for me!) existence. I truly loved life, and I’ve said many times that I’d love to live for 1,000 years and experience at least a dozen more lifetimes. All that said, this one was pretty damned good; I’ve got nothing to bitch about except the painful ending. So please know that I don’t take death lightly, and I need to explain it the best I can and hope that you understand.
For me and I assume most others who love freedom, ALS was the worst torture imaginable. Having ALS is like slowly being imprisoned in your own body; your completely sane mind knows there isn’t a damn thing you can do about it, and it’s only going to get worse (and probably pretty quickly). I’ve recently read a couple of pretty good descriptive metaphors for ALS that really hit home for me. One person described ALS as “feeling as though you’re being buried alive,” and another described it as “feeling as though you’re receiving a slow transfusion of liquid lead into your veins.”
I’m sad to say that both descriptions are quite accurate, and mere words don’t really do it justice because you just can’t imagine not being able to move a body part that is unencumbered. Sure, you can imagine clomping down the street if your leg were in a cast, but try to imagine trying to take a step and your leg simply refuses to obey your mind’s command and doesn’t move. Your mind still expects it to move so you lose your balance and fall on the ground. I’ve fallen down about 20 times in the nearly two years since my symptoms first appeared.
Or worse, imagine that your uninjured leg simply won’t engage the muscles enough for you to get up off a chair. Now take that feeling and spread it throughout your entire body until you no longer walk, talk, write, type, eat with your fingers, or move any other part of your body. You can’t even roll over in bed because the motor neurons in your brain are mostly destroyed and won’t engage your core muscles. For many months now, I’ve slept in a hospital bed and can’t even roll over without a supreme amount of effort grabbing the rails and inching my way around.
And there is always the constant pain from the constant muscle spasms that affect you from head to toe, even while you are sleeping. For me the pain started in my lumbar spine because I had herniated my L5 disc a few years ago, and it gradually spread throughout most of my body. To even stand and limp around for 50 steps on my walker is excruciating on my legs and back. My legs feel like incredibly stiff metal pipes that sometimes won’t move at all if they even have the strength to standing upright. My right shoulder and hand are in nearly constant spasm and pain as well, and it’s spreading to the left side as I slowly and painfully type right now. My hands feel like stiff, tensed up claws that won’t move, can’t grip things, and every day everything gets worse.
At some point, most motor neuron disease victims also lose their ability to chew and swallow. I’m starting to choke on food about now, and as this gradually happens over the course of a couple of years or so (typical but not predictable at all), the walls close in around you and you gradually lose all the things you actively enjoyed doing in your life. (I will make a partial exception here for true “couch potatoes” but even they like to eat while they watch TV!) But the worst thing about the failure of the muscles in your mouth and throat isn’t the inability to enjoy real food–I could live without that. The real issue is that you can no longer swallow at will, so you are always choking or aspirating, and that is the real torture. It is quite literally a feeling of being buried alive. At this point I’m literally afraid to eat, and the only real option is a feeding tube in the stomach. YUM!!!
And of course what kills most ALS victims is when the diaphragm muscles stop working and you can no longer breathe. It’s not visible to others, but I’ve felt the crushing weight of a diaphragm that is slowly losing strength for many months now, and death by suffocation is not something I’m willing to endure as long as I have a choice. It’s gotten to the point that I feel like I’m suffocating fairly often now, and I’ll gasp for as long as I can, but much like smoking, you’ve got to “quit” ALS sometime!
But this process doesn’t happen all at once, and it’s quite confusing at the beginning. Please know that I fought as hard as I could physically and mentally every step of the way. And I owe at least the last 6 months of my life to all my friends and family whose love made me want to go on and fight through the extreme physical, mental and emotional pain. I got to re-connect with some of you after many years, and I even connected with a few people from my biological family that I never would have met otherwise. I am so grateful for everyone’s love and support because it gave me some extra time living the life that I always loved so much!
Fighting through it as hard as I could may have helped me stay functional a bit longer, although the scientific jury is still out on that. The one thing I do believe is that my being an athletic gym rat and trail runner gave me a much higher mountain to fall from, and I think it bought me some time in terms of functionality. It stands to reason that if you start out very strong, it’s going to take a bit longer to bring you down. Of course, Lou Gehrig was in the same spot and 20 years younger than I, and he only lasted two years (the average is about 2.5 years). And it may turn out that extreme physical activity increases the risk of ALS. Older research has shown a 25% greater risk among very physically active people and I read a recent study claiming a 400% greater risk, but that doesn’t really account for many cases overall.
I’ve talked about my decline in a couple of my other posts, so feel free to skim the next few paragraphs or read those posts for more details if you like. It’s important to me that my friends and family understand my journey though and know how hard I fought and lived what was left of my life the entire way. The first motor skill I lost was the ability to run. My right leg suddenly became too uncoordinated to engage in a running gait with the left leg. But I would keep trying to run every day just to see if I could, and once in a while the nerves would work at 70% efficiency. So that day I would run as far as I could and hope that whatever was wrong with me (I thought it was my lumbar spine at that point) was improving. For about a 9-month period, I was able to do an awkward jog for about 100-200 steps at a time, so I alternated that with a few hundred steps of walking and still managed to squeeze out 2-3 miles. But the mileage I was able to go decreased along with my stamina.
I stayed in the gym the entire time, but I had to alter the exercises I did as things declined. Naturally, I fell on my ass at least 10 times trying to do shit I could do the week before but had to modify as my strength and balance deteriorated. I gradually moved from free weights to machines, and from crippled jogging/walking to the elliptical and the stationary bike. For about 3-4 months, I was in the gym and at work with a cane, and at the very end I hit the gym in my wheelchair about a dozen times.
What finally stopped me altogether was the extreme pain and 3-day fatigue from what had gradually become a pretty tame workout for me. And in the past 6 months, my level of physical and mental fatigue has become unimaginable. Eating a meal leaves me breathless and exhausted. Having a short conversation is almost overwhelming, even on the rare occasion when you can understand what I’m saying now.
I also loved my work and kept going until the very end as some of you might have noticed. I was limping around for almost a year and added a cane for the last 3 months on the job. I finally realized I could no longer give my clients and crew everything they deserved from me, and I had to hang it up at the end of March 2019. Man—That really hurt, and I’m not even thinking about the money. I really enjoyed my work hanging out with awesome people in cool places and solving problems quickly and just getting shit done!! It made me feel useful and valuable, but more than anything else I miss hanging out with all of you work friends and making fun of the crack-smokin’ clients—Hahahaha!!!
But being held prisoner in your own body to the point that you can no longer communicate meaningfully and efficiently to other people is absolute fucking torture to a social person like me. For me, the ability to communicate with all of you is really the crux of the biscuit in terms of the meaning of life. Hypothetically speaking, (although it would certainly suck!) if I were paralyzed from the waist down and could still speak, type, write, and engage with all of you in a meaningful way, I would definitely choose to continue living. But living like the people in the photos below with feeding and breathing tubes, having my ass wiped 24/7, and trying to communicate with one eye looking at letters on a computer screen (at approximately 2.3 words per minute or whatever snail’s pace is possible!) would be constant torture for me. For me, the most difficult emotional/psychological thing so far has been the rapid decline in my ability to speak, text and type over the past several months. It’s been totally awesome to have so many friends who want to come over and visit, keep me company, love and console me, and most of all feed me—Hahahaha!!! But when I can’t talk, text or type back to you and fully engage, I get really frustrated, sad, angry and depressed all at the same time. It’s fucking torture, and I can only take so much of that…
And then of course there’s the financial aspect of living like a total criptard on 24/7 caregiver assistance. Based on what I’ve learned, it would cost me between $30K-$50K/month to live like that, and I just wouldn’t want the money I’ve worked so hard for being squandered paying for such torture. I’d much rather be out of my misery and have the time and effort I traded for the money I saved and invested be used and enjoyed by my family and friends. I’ve always believed the expression “time is money” could also be stated in reverse in the sense that the money you save is really the time in life you spent to earn it. And I want my time/money in this life to be enjoyed by others I love rather than used to torture me and drag out death for no good reason I can think of! I was hoping to use my “earned time” for a really fun retirement with all of you, but it was not to be. The next best thing is to give my life/time/money (all the same thing in a very real sense) to others to enjoy. If I can buy someone else some fun time I couldn’t use, then that’s the best use of my life as far as I’m concerned. I’m damned sure not giving it to some fucking MegaMed care company to prolong my agony. No thanks!
The trick to knowing when to end things is twofold. The first decision is knowing when I’ve had enough physical and psychological torture (a very difficult thing when you love life!), and the second is knowing that if I wait too long the State will be in control if I don’t take charge of my own destiny while I’m still able. I’ve been wrestling with how much torture I can endure for the past few months, and I’ve also been mindful of the fact that if I become physically incapacitated from a fall or some other medical mishap and can no longer check out when I want, I will be forced by our shitty medical and legal system to endure yet more torture while MegaMed sucks up my money until I likely suffocate or endure forced starvation for 7-10 days. (I’ve heard this is legal, and my friends with my legal powers know of my wishes.) And this is ultimately why the end of freedom is the end of life. If I no longer have the freedom to control my own destiny and enjoy life with my family and friends, I say: “Peace, out…”
Final update: It looks like what will force my hand is the inability to swallow and breathe effectively. In addition to the extreme physical discomfort, these medical issues create a lot of emotional stress and constant anxiety that isn’t really effectively relieved by meds. And I’m going through regular phases every day where I can’t stand up and walk with my walker, but I could deal with that if I could eat, speak and breathe! I think I’m literally less than a week away from being the bedbound ALS victims in the photos above, complete with breathing and feeding tubes. ALS is literally a head-to-toe proposition–You’re all in but in a really bad way. And I just can’t go there, so I have to end my life the most effective way possible, and I hope you all understand…
Thank you all so much from the bottom of my heart for your friendship, love, and everything else you gave me in life. Whether working or playing I had so much fucking fun with all of you, and I hope you feel the same way about me (even when I was being an irreverent, snarky, obnoxious pain in the ass—Hahahaha!!!) I really do feel lucky and grateful to have lived what I’ve called my “55 rock star years,” and I want any of you who are sitting complacently on your asses to get them in gear and live life to the fullest. Life is far too short to waste, and remember—If you’re not having fun, you’re doing it wrong!
Oh, yeah–And let’s not forget the “after party.” Backstage passes for everybody. It’s on me and I insist!
SUICIDE METHOD SUCCESS RATIOS AND OTHER RELEVANT DATA–I’m including this so you understand things a bit better and I was surprised what my research revealed. Contrary to popular belief, you can’t just take a handfull of pills and go out peacefully. A LOT of stuff could go wrong. I found that very disappointing to say the least…