Milwaukee folks had our memorial get together Saturday at The Cellar in Oak Creek WI. Great to see everybody and share stories and memories!
Hi Everyone! As you know, 98% of my blog is dedicated to celebrating and expressing the gratitude I have for my life before ALS (and even after ALS to some degree!) But I have to take a moment and let everyone know that things have degenerated to the point that I am having LOTS of trouble communicating with the world. ALS is a degenerative movement disorder, and that means that every movement I try to make from head to toe has gradually gotten worse and is continuing to decline every single week. That means that even if you saw me a few weeks or a month ago that things are absolutely NOT the same for me as they were then.
I also realize that 90% of my decline is not really visible to my friends and family, and that you guys are doing your damnedest to help me go out as “normally” as possible by not abandoning me and always offering to take me places, bringing me delicious meals (which I often do accept and truly love–Hahaha!), bring the gang over to visit, and all the things we used to have fun doing together. Many of you have expressed amazement that I actually still “look pretty good” for a guy with a degenerative, deadly disease, and I understand the cognitive dissonance involved. Hell, when I look in the mirror occasionally I can’t believe the guy looking back at me is really in such bad shape! I totally get it that I don’t really “look that bad,” and people tend to treat me as though I’m like anyone else in a wheelchair who can’t walk but can get by doing most other things at a somewhat functional level. I am very sad to say that is increasingly no longer the case.
It’s probably easiest to understand if I just make a list of how my various physical functions have declined over the past few months so everyone understands where I am, and that what I can or can’t isn’t based on my choice or my attitude or anything really too much within my control at this point. It is also essential to understand that ALS affects each victim differently and different physical functions decline at different rates. We’ve all seen photos and videos of ALS victims who can’t stand up but do the Ice Bucket Challenge fundraiser in a high-tech wheelchair and can speak clearly to the camera when they finish the race. We’ve also seen countless photos of Stephen Hawking communicating with his eye pad device at 3-5 words per minute because that’s the only part of his body that still moves!
Here’s where I’m at right now (and it gets worse every week) and what “works” for me and what doesn’t on all levels:
–Overall fatigue: I have literally lost 90% of my physical and mental energy. So when everyone says I “look pretty good” I appreciate the compliment, but it unfortunately doesn’t reflect reality. A 15-minute personal interaction can literally wear me out, and then I’m down for an hour nap at my desk. If I stretch the 15-minute visit to 30 or 60 by digging really deep into my limited energy, I’m often out of gas for the rest of the day.
–Walking: I can still move around my house about 50 steps at a time with my walker and stand for about 2-3 minutes before the low back pain and muscle spasms in my legs, complete lack of balance, and overall physical weakness will send me to the ground. But I can’t navigate other spaces outside my home, and going to the bathroom without personal help is simply impossible now outside my one specially engineered home rest room. (Thank you, Peter!!!!) And my walking ability is quickly going south as well. In a matter of weeks, I think it will be gone for good…
–Pain: The gist of ALS is that the motor neurons in your brain never rest and they keep many muscles in your body in a state of constant spasm. And I mean constant, as in 24/7–It’s not like an occasional Charlie Horse that we’ve all experienced form time to time. Naturally this causes considerable pain depending on which part of the body is being affected, and for me the worst areas are my low back (I herniated my L5 years ago, so that’s a weak spot), my right shoulder, my right hand and my right leg from hip to toe. My right foot and hand feel like claws a lot of the time when the spasms really hit hard. The left side hurts too but it isn’t as bad. ALS usually favors one side for some reason. And the constant muscle spasms are what gradually make your muscles weaker and eventually useless. Contrary to popular belief, working out in the gym does not build muscle–The actual workout breaks it down. The building and strengthening comes when you rest the muscle in between workouts. And with ALS the muscles never rest so they just keep breaking down until they are too weak to move.
–Talking: My speaking ability has declined very rapidly the past few months to the point that I can’t talk on the phone at all, and I can barely squeeze out a few possibly understandable words in person. And after making the attempt, I’m fairly breathless and tired. Psychologically and emotionally, this has been the most difficult thing for me. Everyone wants to come and visit me, but if I can’t hold a conversation, it’s literally torture to sit in a room full of my friends and be left mute. I know everyone tries to include me and jokes that “they can do all of the talking,” but that situation is incredibly depressing for me. That’s one of the reasons I wrote the blog because I knew it would come to this, and I tried to get as much important conversation out there on my side before I went mute, which I effectively am now. And spitting out 10 words at a time and being left breathless does not qualify as a “conversation” for me. I’m effectively mute now, and that’s not fun…
–Hypersensitivity to sound: Most of ALS affects the motor neurons (not the sensory neurons) and therefore affects movement, but I’m also hypersensitive to sound in particular. A few people having a good time talking nearby is overwhelming to my senses and makes me pretty uncomfortable after only a few minutes. My body literally jumps involuntarily when Dana my caregiver makes a noise in the kitchen sink or something loud happens outside in the street.
–Eating and Drinking: It’s getting nearly impossible to hold a fork for more than a few minutes at a time, and if I don’t focus 100% of my mind on chewing and swallowing, I will end up choking on food and drink that my muscles will have a very difficult time expelling from my throat. And once I’m aspirating food, I’m really fucked. So a seemingly casual sit-down meal at my house is actually the equivalent of a 5K run. I’m typically quite tired and even breathless after eating a regular meal.
–Typing and Texting: Because of the increasingly intense muscle spasms and weakness in my hands and arms, I’m also getting to the point where it’s increasingly difficult to type and text, so I’ve got very little time left to say anything I want to say in this world. It’s not that I don’t want to visit with people, but if I can no longer communicate with anyone by speaking, I’m in essence forced by my condition to communicate by typing for now until that goes completely south as well. The other advantage of the blog or a group email (I have several groups of friends who communicate with me that way) is that it allows me to communicate with everyone at once with my extremely limited energy. And I can do it when I have a few moments of energy to respond, which is not necessarily when everyone is at my house and wants to talk.
As much as all of that sucks, I hope everyone understands that it’s not you, it’s me. I knew it would come to this many months ago as I felt my physical body declining every week, and I hung in there as long as I could. I’m a member of an ALS support group and I’ve watched the decline happen to my fellow victims in various ways, but it always happens. Hell–It’s not like I didn’t want to enjoy the last part of my life as much as possible, and I honestly kept doing everything I could right up until I absolutely couldn’t anymore. I worked, drove around town, went to the gym, dated beautiful women (wink!), and hung out with all for you as much as I could until I absolutely ran out of gas. I spent a lot of time, energy and money dealing with the medical aspects of my disease as well. If you want a more detailed version of where I spent my energy over the past year, read the rather lengthy “From Fitness to Fighting to Fucked” entry.
This entry is really just an update on how things have regressed from there. Please also know that I’ve spent a lot of energy on business and financial stuff to make sure my parents are taken care of and that I don’t leave a financial shit show behind for anyone to deal with. And the medical industry is doing its level best to make sure that it can steal every possible dime from me whether I’m dead or alive. I get constant bullshit from them in the mail, on the phone and in email about money I don’t really owe, and I try not to spend any of my limited time on that. I may write about those scamming, lying sacks in a separate post if I think it’s worth any of my remaining energy (and it probably isn’t!)
All that said (and I had planned on this being a short post, but you know Eric the blabber!), I wish things were different, but I’m a realist who is doing his best to accept the shitty reality that has come my way. Just wanted to let everyone know I appreciate your love and positive vibes and need to be honest with you about where I am in reality.
The new millennium was a great 20 years for me as well. My writing biz ended in 1999 and by then advertising production was going at full speed since I began as a lowly PA in 1991 and started producing in 1993. I always tell people that it takes time to establish your own biz, and it took until the late ’90s before advertising production really began to make some serious money.
On the social side, things were fun as always–Lots of friends and family in lots of places, and I tried to keep up with them all! As I said in my opening post, I’ve always been so lucky to have the proverbial “good problem” of having too many friends. And regardless of my health situation, my “good problem” remains unchanged thanks to all of you! The most frustrating part for me is not being able to socialize and engage with everyone because of my severe physical limitations. I can barely speak, text or type now, so I’m pacing myself the best I can and trying to communicate as much as I can through the blog so I can reach everyone at once. And since a picture is worth a thousand words (or at least a hundred hopefully!), I can communicate as much as possible with as few keystrokes as possible (for good or for ill–Hahaha!) That said, please feel free to reach out to me with comments or directly at my email address: firstname.lastname@example.org. The pics are in no particular order, so pop a cold one and scroll away!
A lot of you youngsters may not know about this, but comedian George Carlin debuted a brilliant routine about free speech and censorship in 1972. It was called the “Seven Words You Can Never Say on Television,” and you can see what they are in the meme above. Like a lot of people my age, I was inspired by Carlin’s on-point social commentary about a lot of issues, and I used him and my musical idol Frank Zappa as inspiration for a speech I gave to my college English classmates at ASU a decade later in 1985. Carlin was arrested for delivering these words in a comedic routine to an audience in my hometown of Milwaukee (how embarrassing for Milwaukee, imho!), and the case actually made its way to the U. S. Supreme Court in 1978 where the court ruled against Carlin, and the uptight crowd embarrassed itself yet again! The topic of my speech was freedom versus censorship, and what more relevant issue could I possibly come up with for a college Public Speaking class?! (And you know how I feel about freedom!)
In 1985, the idea of censorship again caught the public eye when a group called the Parents Music Resource Committee (PMRC) reared its ugly head. It was led by Tipper Gore (congressman at the time Al Gore’s wife), and they actually held congressional hearings about rating so-called “obscene” records similar to the way movies were (and still are!) rated today. Heavy metal was big at the time, and the religious poser types in Congress hated all that “satanic” crap about sex, drugs, and “the Devil,” and they didn’t seem to like Prince too much either. Of course, my musical idol Frank Zappa was front and center at the congressional hearings speaking out against such anti-freedom foolishness, and that put the issue of freedom versus censorship on my radar as a particularly relevant topic for a speech I was assigned to give in my Public Speaking class at Arizona State.
One of the things you were graded on was your ability to come up with an attention-getting opening for your speech, and boy did I have the perfect one in mind—Hahahaha!!! I must confess that I considered several possible openings before deciding on the one I really wanted to give. On the one hand, a more perfect opening than Carlin’s “seven dirty words” could not possibly be had since his routine and story were quite well known in 1985, and it perfectly illustrated the theme of my speech. But on the other hand I had to consider whether I would flunk the speech, fail the class or suffer some other disciplinary action if the teacher didn’t like it. The English teacher was an older dude, but he appeared pretty socially liberal to me, so being the WTF kind of guy I was, I decided to go for it. After all, they were only seven words, and if you listen to the entire George Carlin routine, he actually defends the idea of verbal freedom quite well and makes censorship of mere words look pretty absurd. So I already had a defense prepared should things go south with the teacher; and I knew that I was taking a bit of a chance, but I think you know by know that I’m pretty much wired that way!
The day of my speech arrived, and I was starting to feel pretty nervous (not about public speaking like most people, but about doing something banned by the U. S. Supreme Court in a college classroom instead of in a nightclub or a theater!) I had actually written an alternate “wussy” opening in case I lost my stones at the last minute, so I could wait until I got up on the podium to decide. A few speakers were scheduled before me, and as you might expect in an undergrad Public Speaking class which was required for all English majors, most of the kids dreaded public speaking, had no experience doing it, and just wanted to get their 6-8 minutes over and done with! Consequently, the few speeches preceding mine were boring as hell in terms of both topics chosen and the utter lack of passion or interest that went into writing and delivering them. In fact, they were so lackluster that half the class wasn’t even listening to the speakers and were staring down at their desks reading or writing something unrelated (we didn’t have cell phones then–Hahaha! In spite of the fact that the speakers were pretty boring, there was something almost rude about ignoring them, and this just didn’t sit right with me.
I was becoming increasingly annoyed and said to myself a few minutes before my speech that I sure as hell wasn’t going to be ignored like that! Unlike the English majors taking the class because it was required, I was a Journalism major and took the class as an elective because I actually enjoyed public speaking and thought it would be an easy A. I was on the debate team in high school, had been onstage many times in bands, and I had written what I thought was a pretty good speech on a topic I was quite passionate about (freedom versus censorship), and there was no fucking way I was going to let my fellow students just ignore me. I don’t even care whether anyone agrees or disagrees, or loves or hates what I’m saying, but if I’m standing up there talking, I’m damned sure doing my best to not waste your time and make you want to listen! And that was really the assignment anyway—To write and deliver an interesting speech that grabs the audience’s attention and interest. So with all those thoughts congealing in my head, I took the podium, gave myself a few seconds to become annoyed at being ignored by my classmates, and said without any introduction or explanation: “SHIT, PISS, FUCK, CUNT, COCKSUCKER, MOTHERFUCKER, AND TITS.” And I said it loud so that I made sure even the people at the back of the room heard it.
There were about 30 students (and the teacher) in the classroom, and the gentle buzz of whispered conversations and rustling papers immediately gave way to dead silence as everyone looked up at me in utter disbelief. I can still remember it to this day–The open-mouthed looks on the other students’ faces silently screamed: “DID HE REALLY JUST SAY THAT IN ENGLISH CLASS?” After an appropriate pregnant pause, I think my next line was something like: “Now that I’ve got everyone’s attention I’m going to talk about the important issue of free speech versus censorship, and I’m pretty sure you know which side of the issue I stand on.” I smiled and got a few laughs on that line, and I can say with absolute certainty that the entire class listened to my entire speech and even applauded at the end—Hahaha!!! I also remember concluding my speech by pointing out that even if some of the audience were offended by some of my language, their discomfort was a very minor thing when compared to the importance of a free flow of ideas and discussion in a free society! I also made the point that a college classroom was an ideal venue for the free flow of ideas so that we could all learn as much as possible.
I must admit I was concerned about what the teacher thought, and he was cool enough that he was smiling a bit and at the end of the speech jokingly pointed out that I had certainly gotten everyone’s attention! And since I know you’re all wondering, I did get an A on the speech and an A in the class. As I said in another essay: “No Guts, No Glory!” Unfortunately, I’ve heard from some friends that have kids in college now that things aren’t quite so free anymore. My speech likely would have emotionally “triggered” someone and violated the “safe zone” policy of universities, and I’d be lucky if I weren’t thrown out of school.
So much for the free flow of ideas and all that “old-fashioned” stuff, but it makes me more than grateful that I grew up in the freer era that I did and that the English teacher had the mindset that freedom was a higher value than “emotional safety” or whatever they call the anti-freedom mindset these days. I’m old but I have heard that modern wussies are called “snowflakes” these days because mere words cause them to melt. Apparently they were never taught the “sticks and stones” rule by their parents when they were about 4 or 5 years old. I’m quite grateful for that early life lesson too because if you go around worrying about what other people think and say all the time, you end up living a life of fear rather than freedom. And the ultimate irony is that most people don’t really care all that much what you say or do anyway. Be free…
This is a bit of a weird post for me in the sense that I’m kind of disappointed and angry with a few former friends since my ALS problems began almost two years ago. It’s a weird post because I’ve deliberately tried to focus on all the positive aspects of my life, and this one is intended as a proverbial “wake-up call” in the spirit of “tough love” to these friends because I literally don’t have any more time to fuck around trying to be patient or nice to them. To be clear, I’m not angry with them for an obvious reason like they don’t support me in my struggle or something like that—I am so lucky to have so many real friends who have my back in every possible way, and I am so grateful for all of you! I don’t need them for that, and they’re not capable of it anyway. I’m angry with them now because being diagnosed with a painful, degenerative, deadly disease has changed and amplified the way I look at life and my gratitude for all of the amazing gifts and opportunities life has given me. In essence my view of these friends has changed from “pity the fool” (as the infamous Mr. T used to say!) while sincerely trying to help them for years, to “go fuck yourself, you stupid, ungrateful asshole.” This piece is essentially my last gasp at trying to make them see the light before I move on to who knows where…
I’ll describe these friends for you first and see if you know anyone like this so you can relate to my message. (And I’m guessing you do—This seems to be a more prevalent problem than it was decades ago for reasons I will speculate on later…) The few friends I’m talking about are those that are constantly negative about life and “play the victim” when they have absolutely NO REAL REASON TO DO SO. The people I’m talking about don’t have any severe health problems, were never abused by anybody close to them, possess above average intelligence, and had long periods of their lives where they were normal, reasonably happy and successful people. Any life “problems” they had were well within the range of normal challenges all of us have worked through and hopefully came out better for and learned from at the end of the day. I’ve written many such stories in my blog about my risky behavior and fuck-ups already, and there are also some painful experiences I haven’t discussed because I wanted to respect the privacy of others when they behaved badly towards me. But I’ve gotten through them with varying degrees of difficulty and pain, and I’m sure most of you have too. And I must emphasize that the first step in getting through a difficult situation is admitting that you are often the cause of at least some of the problem!
Let’s call this group of friends “the crazies” or “the victims” just to make writing this piece easier for me. Before I got ALS, I put up with my crazy friends’ endless inane babbling about how “unfair” and “difficult” life was to them because I really felt sorry that their lives had gotten off track, and I sincerely hoped that one day they would wake the fuck up and realize that barring some unforeseen tragedy (and I now know about that!), life is largely what you make of it. Over the years, I would repeatedly offer to help them directly, suggest specific things that I was pretty sure would help them, and always be there as a friend to talk them through things, some of which I had been through myself and had successfully moved beyond. Despite my best efforts over more than a decade in several cases, I was unable to help these friends other than to be a captive audience for their endless inane babbling about their shitty lives.
What ALS made me realize is that I had been nothing more than an enabler all those years, and when most of their other friends gradually abandoned them, I stuck around like an idiot and listened to all the lies they told themselves about the world and their lives as fictitious “victims.” These friends had slightly different types of problems—some financial, some relationship problems, some self-inflicted health problems, and all had attitude problems, but they had two things in common. First, all of their supposedly insurmountable problems that were victimizing them were 95% self inflicted and a result of their passionate desire to be viewed as “victims” by the world. Second, all of their problems were quite solvable with a modest amount of time and effort.
Part of their problem stems from the recent trend toward viewing what used to be considered bad or inappropriate behavioral choices as psychological or medical “conditions.” This trend was started by the psychology profession back in the 1960s to drum up more business for themselves. I myself was a victim of this trend for about a week when I was only 6 years old. I was bored in class and talked too much, so some school shrink “diagnosed” me as “hyperactive” (they didn’t call it ADHD back then, but hey–They were just getting started messing up young children on prescription drugs! Read my entry “Letter to Ben and Jim–Doing Drugs at Age 6” if you want to know my experience with this bullshit.)
My gang of “victims” could be said to suffer from the modern medical “conditions” of ADHD, depression, OCD, ADD, ad infinitum, (they would say so anyway because that pop psychology supports their fictional “victimhood”), but what escapes me are two important things—One that makes no sense, and another one that really pisses me off. The one that makes no sense is how someone’s adult mind spontaneously morphs from making mostly sane, mature choices about life (whether it involves their career, relationships, general state of mind or behavior in terms of how they treat and relate to other people) to insane, juvenile, spoiled bratty 9-year-old choices. But the one that really pisses me off is that they refuse to admit that any of this is their fault and that THEY COULD ACTUALLY TRY TO DO SOMETHING ABOUT THEIR PROBLEMS.
For me with ALS, this is the crux of the biscuit. I’m pretty much helpless for the first time in my life and I hate the hell out of it, and these assholes have all the power in their hands they need to improve or resolve their relatively minor problems, but they refuse to even try. And as horrendous and painful as ALS actually is, I do my best to remain grateful for my “55-rock-star years” and remind myself that there are other real victims that have had lives considerably shorter and more painful than I have. I mentioned my cousin Michael and a friend’s son David in another post because they were both correctly diagnosed with a REAL PSYCHOLOGICAL DISEASE (caused by a genetically inherited chemical imbalance in the brain) known as schizophrenia. My cousin Michael basically drank himself to death in his 40s trying to beat down the voices in his head, and we suspect David committed suicide at age 26 because he couldn’t take the torture anymore. As drawn out and painful as my death may be, I’ve had a smokin’ deal in life compared to these guys! And we can all think of people we know who had extremely painful lives all the way through or who died even younger than Michael and David.
To add insult to injury, I’ve wasted countless hours of my healthy time on this planet enabling these friends who WON’T EVEN TRY to do anything to improve their lives, when they could be substantially improved with only a modest amount of effort. When I got ALS (even before I knew what my condition was) and was frantically going from doctor to doctor first looking for a diagnosis and now trying any experimental treatment out there, my response was: “Holy shit, this really sucks! I need to figure it out and do anything I can to fix it right now!” I think I spent about $35,000 in the year it took me to get the diagnosis and about the same so far on potential treatments and home care since I became disabled a while ago. And I’m not done yet…
When I contrast my desperate search for answers to what now turns out to be a deadly disease with the stubborn refusal of my “victim” friends to even attempt to improve their lives, it boggles the mind how anyone could make such a choice, and that that choice would last for more than a decade in several cases. And to be clear, I do think that some people can benefit from psychological counseling and self-help groups in many cases (I’ve done both with mixed results in my lifetime), and there are actually legitimate psychological conditions caused by a chemical imbalance which might be improved with medication. I don’t think 25% of boys need to to be doped up in school for being normal boys, but I would guess that there are chemical imbalances in say 3%-5% of human chimpanzees that might be improved with BigPharma scripts. Of course it’s a crap shoot trying to figure out what works on who (the shrinks are doing a lot of guessing, imho), but if I felt I were one of these people I would certainly entertain it as an option and try to fix or improve my condition. But any suggestions along these lines on my part were met with hostility and denial.
When I think back on the offers of help and countless hours I spent on talking to my “victim” friends, I get furious because I finally get it that most of their behavior is just narcissistic babble directed at anyone dumb enough to listen and validate their imaginary victimhood. With a couple of these friends, I would encounter instant hostility as a response when I even suggested there might be solutions to their problems. I’m known to be pretty good with money and investing, and in several cases I suggested simple fixes that would improve my friends’ financial situations significantly with only a few minor changes and not much sacrifice on their part. I was told in no uncertain terms by my financial fool friends that this would be unacceptable for a variety of nonsensical “reasons.”
In another case I suggested to a highly intelligent, college-educated friend my age who used to have a real career that he might want to get his ass out there in the real job market and ditch the part-time minimum wage job he had been working for the past several years. I had suggested this multiple times (and for the previous ten years while he was a voluntarily unemployed hermit sitting in his apartment feeling sorry for himself!), and every time I did I was met with a hostile response along the lines of “don’t even go there” or “you just don’t understand the local job market here” or some other BS. In hindsight, his message to me was: “I don’t actually want to improve my situation—I just want to drunk dial you every week and talk your ear off bitching about my stupid job, my stupid boss, the hours I waste listening to inane Blue Team/Red Team talk radio (which Eric the libertarian repeatedly told my friend was time-wasting bullshit!) and have you listen to me for hours and validate my victimhood.” How could I have been so stupid?!!!
Since I transformed from a fat, unhealthy boozer into a fitness buff starting at age 48, I’ve had countless people ask me for diet and exercise advice. You can read my post “From Fatness to Fitness” for all the details, but I can’t tell you how many absurd excuses I’ve heard about why someone can’t do what I did or how I must have “cheated” by using steroids or something. (I didn’t—I was totally “natty.”) Some of the more creative excuses were things like: “A woman in menopause has hormonal issues so it’s not my fault that I’m fat” to the honest yet foolish “but I LOVE pasta and chocolate!” And we’ve all heard the term “big boned” so many times that one would have to conclude that Americans are some weird kind of genetic freaks that put Samoans to shame! Oh wait—Americans are pretty much a genetic conglomeration of the entire planet yet are the fattest bastards anywhere. But it couldn’t be anything self-inflicted, could it?
To be clear, I’m digressing a little because those aren’t the crazy victims I’m talking about, but you get the idea. People don’t want to accept responsibility for their choices in life, and playing the victim is an extreme form of this behavior. On second thought, some of the people asking for diet and exercise advice are well on their way to “victimhood” status because when they end up developing Type 2 diabetes or something equally unhealthy, they will undoubtedly refuse to take responsibility for the fact that they’ve been 75 pounds overweight for a decade or two. In their “victim” mentality, it will be “bad genetics,” “bad luck,” “big bones,” “hormones,” “GMO food,” or something else outside their control rather than the real truth that they ate too much shit and didn’t exercise since high school gym class!
And look—I’ve been the fat, unhealthy person with all kinds of bad habits, so I can say all this stuff from experience. I am grateful I had a lot of fun partying and enjoying life (and that I got away with it without any permanent negative consequences!), but I’m also grateful for the epiphany I had at age 48 that made me wake up and smell the proverbial coffee (wait—can I still drink that? LOL!) I did honestly have some developing health problems including high blood pressure, aching joints, and a bad back which I can say were directly caused by my bad habits. And these problems and others likely would have gotten worse with age. Hell, when I smoked as a young man it got so bad I was gasping for air after climbing a couple flights of stairs too quickly. And that was the proverbial slap in the face at age 30 that got me to quit. Let’s call that one my first epiphany. Duh—Idiot!!! To my credit, I had to try to quit about 5 times, and I kept trying even though I failed the first 4 times.
And if it turns out that ALS is caused by bad (or “good”) habits, I’ll be right out front taking responsibility and being the poster child saying, “DON’T DO WHAT I DID!” A side note/FYI—ALS researchers have studied everything from diet and exercise to drugs and alcohol to environmental causes for decades and so far have only come up with about 10% of cases caused by genetics. ALS was initially discovered by a French doctor in 1869 and it was named Charcot’s disease after him. When Lou Gehrig got it in the 1930s, there was a spate of research on whether TOO MUCH EXERCISE could cause ALS by overtaxing and stressing the motor neurons. They found that athletes had a 25% greater chance of getting it, but that really didn’t explain much since 99.7% of athletes didn’t get it, and plenty of average slobs did.
Being in my current situation, my emotions toward so-called “victims” alternate between fury and pity, and some of this depends on the particular friend in question and how entitled to their victimhood they’ve acted toward me. But regardless of whether I lean more toward fury or pity in any particular case—Wake the fuck up and change the bad stuff in your life before it’s too late, you stupid assholes! Life can be much shorter than you think, and as the old Schlitz beer commercial says: “You only go around once in life, so you’ve gotta grab for all the gusto you can.” (And yes I know there are multiple ironies in my citing this slogan including Eric the writer using its bad grammar; Eric the ALS sufferer having his first noticeable ALS episode after a few beers; Eric the advertising producer citing an ad in the first place, and Eric the fitness buff citing an ad encouraging excessive consumption of something that can definitely cause one to be fat and unhealthy!) But as always, irony is part of the Tao of life, and I urge you to take the term “gusto” in a more figurative sense meaning “a full life” and not as a direct translation for “Schlitz beer” as intended by the ad copywriter of yesteryear! The beer in the glass below symbolizes all the possible beauty and joy in your life. Some people have fuller glasses than others, but whatever is in your “beer glass of life,” DRINK UP! 🙂
The 1990s were a great era for me. I had two small businesses going; I met Sandy and spent a lot of time in NYC which I really loved, and life was definitely a “work hard, play hard” adventure! I’m much too lazy to put the pics in any particular order–I’ll just let them speak their 1,000 words (or not–LOL!) and you can enjoy them (or not!)
GRANT MAN AND THE ISLAND BEAT
The very first band I joined was formed my freshman year of high school when I met Dick the Drummer in “Gay Perry’s” theology class at Milwaukee’s Marquette High School in 1976. (A side note since I know you’re wondering who the hell “Gay Perry” was… “Gay Perry” was the well-established nickname for our Jesuit freshman theology teacher with a vibe that definitely set off your “gaydar” when you met him—Hahahaha! I always found him to be a pretty chill dude and figured he kept his sexuality in the closet back in the day. But in the recent spate of the Catholic church outing its priests, our man “Gay Perry” was indeed included on the list! And to be clear—Neither I nor anybody I knew was his “sex student.” Apparently we did not set off HIS “gaydar!”) Anyway, back to the band and its rather auspicious origins…
Drummer Dick and I started discussing our musical tastes of course and found that we actually had a lot in common, most notably a passionate love for the Rolling Stones. I had only been playing guitar for a couple of years, and my guitar teacher had taught me a few Stones’ tunes at that point. If my memory serves (and it may not—Hahaha!), these included “Jumping Jack Flash,” “Honky Tonk Women,” “Sympathy for the Devil,” “Dead Flowers,” and probably a couple of others I can’t recall at the moment. He also taught me some Hendrix, Lynyrd Skynryd, Cream, and a bunch of other classic rock of the day. I probably had a repertoire of about 20 tunes I could hack my way through, and thanks again to my Mom for not letting me quit music and insisting that I take actual music lessons when I switched from viola to guitar!
Well, Dick already had a basement band going with two guitar players (and I use the term loosely, including applying it to myself—LOL!) One guy Kevin (not my bro Kevin) actually knew about 10 songs, and I remember his best one was Jethro Tull’s “Teacher.” The other guy Don only knew part of one song that I ever heard him play, and that was Styx’ “Castle Walls.” Needless to say the band had pretty humble beginnings! Oh and before I forget, it was really Dick’s band, so he of course named it “Watts” after his favorite drummer Charlie Watts of the Rolling Stones. Sorry Rico (one of Dick’s many nicknames), you get zero points for creativity on that one—Hahaha!!
Thanks to my guitar teacher showing me a bunch of songs and continuing to teach me new ones every week, I was in as the guitar player and the other two guys were out. Fortunately, I had also recently met another Eric on the debate team (a whole set of stories on its own!), and he was about the same level as me and actually knew some songs. He had an older brother teaching him, and Eric’s older brother also had a bass and amp he let us use so—Voila!—The band was off and running! The other Eric (let’s call him Eric B.) basically taught ourselves bass and took turns depending on who knew the guitar part best. Our shy singer Bill and keyboard player John rounded out the band, and “Watts” was born.
Of course we didn’t have a real PA system, and we basically jammed a microphone or two into a guitar amp and tried to get it done that way. When we did the occasional gig (our first one was playing a dance for 7th and 8th graders at St. Mary’s of Elm Grove, WI—A ridiculous story in itself!), we of course rented PA sound systems for those, but we went without a rehearsal PA in the basement for the next two years. Back in those days, a basic rehearsal PA cost more than a used car, and I was making the princely sum of $2.35/hour slinging burgers and root beer at the local A & W! And Dick was a slacker who didn’t even have a regular part-time job—Hahaha!
Fast forward about two years when we were now all driving and I was in a carpool that met at my neighborhood Presbyterian church every morning. The pastor and his family lived right next door to the church, and they were literally only three houses down from our house. They had 5 kids and we all played together, knew each other well, etc. Our neighborhood was only 11 families and the church, so needless to say, everyone knew each other! Of course, the doors to the church were always unlocked (it was the 1970s), and we would regularly wait for the carpool to gather inside the lobby with the blessing of the pastor when it was cold outside (and that was most of the school year in Wisconsin!)
Next to the lobby was a large event room with a stage, and at some point a complete setup for a rock band magically appeared on the stage! It belonged to some of the parishioners (who were in their 20s, I believe), and they were using the room as a rehearsal space. I didn’t think much of it initially but I casually mentioned it to Dick one day in class (crazy Fr. Egan’s theology class ironically), and his eyes lit up in a way I still remember to this day—Hahaha! We had a brief discussion about the logistics of things in terms of the door being always unlocked, no people being around 95% of the time, etc., and although I knew it would be quite easy to abscond with the other band’s PA system, I really didn’t think it would ever happen. It was nothing but a couple of high school stoners talking, dreaming and wishing we had our own PA.
My recollection is that Dick was the most motivated in this escapade, probably because he sang more than I did and he also took the band more seriously than the rest of us did at the time. I’m guessing a few months went by as Dick kept asking me if the PA system was still “available.” I told him it was still there and at some point he became motivated enough to enlist our singer Bill in this skullduggery because his parents had a station wagon which we needed to fit the gigantic PA speakers! I really don’t know what I was thinking when I agreed to be a part of this bad musical mojo (or serious sinning to be Catholic/Presbyterian about it!), but Dick had a strong personality and was used to having his way. I foolishly acquiesed, and we scheduled our crime during a final exam weekday so we could be at the church around noon on a weekday in December when nobody would be around.
As we pulled up to the church in Bill’s parents’ station wagon, I started to get a really bad feeling as I looked around nervously and realized (DUH!) that I was in my own neighborhood and that every single person who lived here would instantly recognize me! I looked around to make sure no neighbors were driving down the road but I had no idea who might have been looking out their windows. We pulled right up to the door and I snuck in as quickly as I could with Dick and Bill. We walked into the event room, and there it was—A beautiful Kustom PA system with the famous “tuck and roll” padding elegantly encasing the speakers and the amplifier/mixer.
If I didn’t know better, I’d say that Dick was drooling with delight as he envisioned his and Bill’s voices screaming out of the PA, and of course the irony was that we were all pretty crappy singers at age 16 and even a nice PA wouldn’t help us all that much! We got up on the stage and moved our booty down the 4 or 5 stairs and started rolling it towards the door. When we got about halfway across the main floor, I panicked and told Dick that we couldn’t do this, started to turn my stolen speaker around, and said that we should put it back and call the whole thing off while we still had the chance. He gave me a look that could kill, and I think he said something to the effect of “too late now”—The PA was going in Bill’s parents’ station wagon whether I helped anymore or not. I realized that he was essentially right in terms of me no longer having any control over what happened next short of starting a fight or immediately ratting out my bandmates when I was as deep in the shit as they were. And I would undoubtedly be viewed as the instigator anyway because I found the “opportunity” in the first place.
I did refuse to load it in the car in case one of my neighbors drove by and saw me, so I quickly skulked into the getaway car instead. We did manage to get away with nobody being the wiser and we drove back to Bill’s house and unloaded the PA into his basement. Now of course you might wonder how we would explain our sudden good fortune to Bill’s parents in acquiring a $1,500 sound system out of the blue, but Dick and Bill had that covered. They made up a story about some other kid at school whose family had money and their kid was simply loaning us his PA for a little while. Bill’s parents didn’t bat an eye, and I calmed down a bit when it seemed like we had gotten away with it for now.
Well, my calm quickly became anxiety in a few weeks when the phone rang and it was our neighbor the pastor calling about the PA that had mysteriously “gone missing” from his church! My Mom took the call and I was actually in the kitchen when the call came in so my Mom asked me to get on the phone with Reverend D. because he wanted to know if I knew anything about it. Of course I acted as surprised and shocked as I could and said I knew nothing, and that was the end of it for the moment. But the pastor knew I was in a band, and he also knew that our Catholic school carpool met in his lobby next to the event room so I would have been well aware of the band gear in the room. Reverend D. was no dummy, and I think he was trying to give me a chance to do the right thing, confess to the crime, and return the stuff without involving the police. But I was too young and dumb to see it that way, and of course I would have had to rat out my bandmates, so I stuck to my story.
I told Dick and Bill about the call the next day at school, and we kind of agreed to just let things ride and see what happened. Obviously nobody had seen us steal the PA, and in our minds it was safely tucked away at Bill’s house 20 miles away. As the next thee months or so went by and we never heard anything else about it, we began to think we were home free. Dick actually felt comfortable enough at that point to move “his PA” (in his mind—Hahaha!) into his parents’ basement with the same story and we started to rehearse over there.
But there was one member of the band who made the moral choice and refused to sing through our stolen booty of bad musical mojo. Our other guitar player Eric B. was much less of a rogue than the rest of us, and he was quite vocal about his vehement disapproval of our theft. His microphone remained plugged into the old guitar amp, and even though we gave him plenty of shit, he stayed on his moral high ground. I sometimes wonder if he didn’t say something to someone that ultimately got us busted, but the fact was that Dick got overly complacent and told a few of his friends, and all it would take was someone’s parents getting wind of our scam and dropping the dime on us. And good for the other Eric for making the choice this Eric should have made. It was one of the few times my WTF attitude led me down the completely wrong path in life.
I may have escaped phone call number one from Reverend D., but about 3 months later I answered the phone one Saturday afternoon when my parents weren’t home. It was a sergeant from the Mequon police (our little burg), asking to speak to one of my parents. I truthfully told him they were out, and he asked if he were speaking to Eric by any chance. I replied that he was, and at that moment I knew we were busted. He was actually pretty chill and told me not to talk but to just listen. I shut the fuck up as he told me that he had heard that I might have had something to do with the church PA theft and that all they really wanted was their PA back ASAP.
I started to stammer some lame protestation of innocence, but Sergeant Stadenko (OK—I can’t remember his real name and you old geezers get the joke!) told me to just shut up and listen to how things were going to go. He told me that they wanted the PA delivered to the police station that day, and that the faster it happened the easier things would be on us. If I told him I really had nothing to do with it, that was OK too, but he was going to talk to my parents as soon as possible, get the names and numbers for my bandmates’ parents, and call them directly to see if any of them had noticed a pair of 5-foot-tall speakers in their house recently and whether their kids’ voices sounded any louder through the purloined PA system! And if I made him do all that extra work, it was going to cost all of us.
My initial reaction that we were indeed screwed was of course confirmed since the PA system had by now been in not one, not two, but three of our band members houses and had of course been seen by three sets of parents. And get this—our singer Bill’s dad was an FBI agent so it wasn’t like he wouldn’t have noticed “our” new PA in his basement—Hahahaha! (OK—I can laugh at the bitter irony now and the fact that his station wagon was the proverbial “getaway car.”) My response to the sergeant was to ask if I could call him back in 10 minutes, and he told me that would be an excellent idea.
I immediately called our fearless leader Dick to tell him the bad news. It didn’t take much convincing for him to understand that we were screwed, and he immediately called our friend P. J. who pretty much had 24/7 access to his parents’ Chevy Suburban. Thankfully P. J. and his Suburban were available, and I was able to call Sgt. Stadenko back in just about 10 minutes to let him know that we would be delivering the PA within the next 2-3 hours tops. He said that was great and that he would be there waiting for us, and I assumed that everything was cool except for one minor point. I of course asked (with bated breath) if my speedy cooperation meant that us returning the PA this afternoon would be the end of things, and he said that it would be from a criminal standpoint. It appeared the reverend and the rather gracious parishioners who owned the PA did not want to mess up some dumbass teenage boys’ lives (we were 16 or 17 at the time) by pressing charges against them. I breathed a huge sigh of relief and for a nanosecond I thought—”Thank you, Jesus—We escaped that debacle by the skin of our teeth!” But my relief was quickly dashed when the sergeant said that “of course we will have to tell everyone’s parents since you guys are still minors.” I tried pleading with him for a minute to no avail of course, and he kind of snickered as he said “we’ll see you soon” and pretty much hung up on me.
I knew my Mom would be home before the PA was delivered and we had to all meet the cops, so I decided to bite the bullet and admit my guilt the moment she walked in the door about a half hour later. As expected, she was both ashamed and angry and insisted on taking me to the cop shop to meet my fellow thieves and the sergeant. I was actually glad I did it that way—I had never really felt right about the whole thing, and I was willing to accept whatever punishment meted out because I sure as hell deserved it in this case! I can still remember Mom and I sitting down with the sergeant and him doing me a solid by saying that I was extremely cooperative and gotten the PA returned in record time, etc., but my parents were still not very impressed to say the least!
I think I was grounded for a month; the band dissolved for a 2-3 months because that was part of Dick’s punishment, Bill was permanently removed from the band by his FBI agent father, but the worst thing was that I had to walk over to Reverend D’s house IN PERSON to confess and apologize for my sins. I don’t think Presbyterians have confession like Catholics, but he sure got to hear one from this Catholic boy—Hahaha! (Sure, I can laugh about it now!) But you know what the worst part was for me? Having our whole neighborhood know that I was the thieving asshole who stole a PA system FROM A CHURCH. And from our neighborhood church no less…
Was there any upside to this story, you may be asking? I can honestly say that the embarrassment and humiliation of having our entire neighborhood know I was a thieving, lying bastard made me never steal anything again in my entire life. I am very grateful that I learned this lesson hard enough to get my attention but not that hard since we weren’t prosecuted criminally. Reverend D., the PA owners, and the police were all very kind to us in hindsight and I thank them for that. I had never felt good about it in the first place, and I learned to trust my instincts (and what I was taught by my parents of course!) for right and wrong, good karma versus bad, etc. for the next 40 years. And I can also say that we didn’t have enough vocal talent that it made that much difference anyway. Compromising my integrity for a little bit of extra volume, EQ, and reverb? With mostly Bill and Dick singing?!! Seriously?!!!
The 1980s were “berry berry good to me.” (An SNL quote from that era for you youngsters…) I moved from Wisconsin to Arizona in 1983, and I had amazing times with family and friends old and new! And if you aren’t in a photo, it doesn’t mean I don’t remember you–We just didn’t all walk around with cameras in our hands back then. But I appreciate all of my family and friends from the 1980s and many of you are still with me!
ERIC THE BABYSITTER
You’ve already seen band pics if you checked out any of my music stories, but here’s a few for grins in case you haven’t. I did play a lot of music in the 1980s before I started my real career in advertising. It was always a hell of a lot of fun!!!
I did get to play “with” the Effects on one recording though, and here it is…
I moved back to Milwaukee from Arizona in 1988 for a couple of years. That’s its own story and it definitely involves a woman! But I did have the pleasure of playing in Brave New Groove, and you can hear some of our stuff in my blog story about them. It’s good stuff–Have a listen!
As you might have figured out from some of my stories, I’ve worked with a few well-known people over the years doing commercials and photo shoots, etc. And I met some others through my musical and political adventures. Of course, it was generally verboten to pose for pics unless the celebrity offered, and here are a few for your amusement…
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…