Author: Eric H

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.

From Fitness to Fighting to F*****d – Eric the Fun

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: erichofstetter62@gmail.com. The pics are in no particular order, so pop a cold one and scroll away!

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! 🙂