Old Pics From the ’60s & ’70s

As you can see from the pics, I had a pretty typical awesome childhood with great parents and a cool sister. We grew up in a place called Mequon, Wisconsin which was a suburban/semi-rural area just outside of Milwaukee. The pictures speak at least a thousand words, and I’ll be adding more as I find them. Love you Mom, Dad and Sis! 🙂

My high school girlfriend Kim K. and I on our way to the senior prom at MUHS. Why are my eyes always closed?
Brian, Heidi, Kim & I getting ready to go out for Halloween, which was always my favorite holiday. Like my buggy sunglasses? Hahahaha!!!

Honesty, Success and Karma in Business

As you already know if you’ve read any of my “work” stories, film and photo production often beats a “real job.”  And if you’ve read some of my life stories, you can probably tell that I’m pretty open and honest, often to a fault!  Whether it’s business or personal (and the two overlapped for me to a huge degree), the most important quality one can have is honesty, both with oneself and with others.  As I said in my story about “How I Learned Honesty from My Mom” (via spanking!), honesty is an essential component of trust, and without trust you really don’t have a valuable relationship with anyone.  Oh sure, it could be potentially “valuable” in the short term to lie about money in a business relationship or something else in a personal relationship, but it’s my firm belief that dishonesty can only generate short-term rewards and will not provide any long-term success or meaning in one’s life. 

Having been self-employed my entire adult life, I know the value of honesty better than most by working with all types of people from all over the world.  In my film and photo advertising career I did over 900 projects with about 500 different clients and their producers/account reps, etc.  Having to negotiate the terms of all those projects from scratch, I’ve seen the entire range of humanity in terms of those who were 100% honest and trustworthy to those I wouldn’t trust for a split second if my back were turned.  And if I accepted 900 projects, that means I turned down over 2,000 of them because they weren’t willing to pay my crew and I a fair amount of money or wanted me to participate in some other dishonesty to cut corners in some way or another. 

I made kind of a serious joke to my friend Rob when he bought my company that 70% of the calls you get won’t be “real jobs” that you can accept.  He looked surprised at that high percentage, but the fact is that about half of the 70% simply don’t know what they’re doing and are asking for the impossible (I referred to them as “crack smokers” because they would have to be really high to think what they were proposing were even remotely possible either logistically or for their very short money—Hahahaha!!), and the other half of the 70% know damned well they’re bullshitting you about money (and likely a lot of other details as well!) and are just looking for a sucker who will agree to their bad deal initially and find out later what a bad deal it really was.  (And I had many names for them as well…)

Fortunately, I learned this lesson early on, and here are a couple of examples.  Back in my early days (probably around 1994 or so), my partner Marc and I had a 36′ Dodge Allegro production motorhome that we would rent out and drive to shoots for use as a production office in the front half, and a hair, makeup and wardrobe space in the back.  That thing was a beast to drive, but we customized it fairly well so that it was quite functional for film and photo shoots.  We had about $20K and a lot of sweat equity invested in it, and we rented it out for the princely sum of $325/day, and that included one of us driving it.  A standard day in our industry varied depending on your job, but the motorhome standard was 10 hours, and after that the driver got paid overtime.  The driver’s rate was also a princely sum–$125/10-hour day, and I don’t think it was too much to ask for time-and-a-half based on that blue collar rate!

This particular job was a Nissan commercial featuring Arie Lyundeyk the Indy car race driver.  In 1993 any car commercial was a big, expensive proposition with a large crew, and having a real race car driver made it even bigger.  My good friend Denise was the local production manager, but this was a big shoot so she had to answer to a couple of other producers above her on the food chain.  She was getting pressure from them to save money anywhere she could because the client and ad agency were trying to pay for this somewhat over-the-top shindig any way they could.  Hell, Arie’s agent probably charged them six figures for two days’ work just to say three lines and drive the Nissan around for a minute! 

At one point just before the shoot, Denise told me to expect very long shoot days and ask if I would work on a 12-hour day instead of a 10-hour day based on the lie she was told that “the shoot was on a really tight budget.”  (I was a relative newbie at the time and hadn’t yet learned that there was really no such thing as a “low-budget” car shoot in 1993!)  I scowled a bit I’m sure, but since Denise was my friend I agreed as a favor to her.  I showed up on the shoot day at zero-dark-thirty as usual to get things set up in my motorhome, and a few hours later the Japanese clients came cruising onto the location in two or three large passenger vans.  Now normally a big shoot like this might have anywhere from 3-6 people on the client side, but Nissan literally sent about 20 people all the way from Japan for this one!  For me this was a huge red flag that we were being lied to by the main producers in terms of the project having a so-called “tight budget.” 

I casually asked Denise where all these undoubtedly “essential-to-the-shoot” Nissan clients were staying while they were here on their “tight budget” project, and when Denise replied, “Oh, they’re at the Biltmore” (one of the most posh and expensive resorts in Phoenix!) I think steam came out of my ears as I told her we were back on a 10-hour day.  We went back and forth a little more on it, but I stuck to my guns and told Denise that if any of those lying SOBs had a problem with Eric the motorhome peon being fairly paid while a bunch of Japanese dudes got an all-expense paid vacation to Arizona in high season, they could talk to me directly.  I never heard another word and I was paid based on a 10-hour day.

That valuable lesson and a few others early in my career paid off in spades as I got more experience and became a producer myself and started my own production company with my ex-wife Sandy.  We figured out pretty quickly that I had a pretty good nose for bullshit, so I was the default project estimator and negotiator pretty much from the start of our company in 1994.  (And I had a nice deep voice on the phone that said: “Don’t fuck with this guy”—Hahahaha!!)  Sandy was much too nice and sweet, which made me want to marry her, but I did not want her on the phone with a lot of New York City liars (even if she was from New York!) 

We’ve all heard the expression “shit flows downhill,” and I was actually told this more than once by an arrogant client, producer, or other brainwashed idiot over the years.  But I had a great response that went pretty much like this: “Shit may flow downhill, but if it hits me I’ll pick it up and fling it right back up in your face.”  Yes, I actually said exactly that more than once, and it tended to shut the arrogant liars up pretty quickly.  I definitely never viewed my business or industry as a “ladder” with the client on top and various levels underneath, each of whom was required to follow the orders of those above them in some imaginary “food chain.”  Of course it was my goal (and my job!) to do the best work I could for the client to make them happy (and want to work with me again!), but I viewed the production process as a wheel with me the producer as the hub of the wheel rather than a ladder with me somewhere in the middle trying desperately not to be knocked off and sent flying! 

It was my job to organize the client, crew, talent, location owners, vendors, etc. (the spokes of the wheel) and keep kicking them all in the ass so they would be in sync and the wheel would keep moving forward!  Our industry had very tight deadlines, so a “ladder” model didn’t work nearly as well as a “wheel” in rolling out a project in record time.  And I was always honest with everyone so they understood why I needed decisions made now and shit done immediately afterward.  And that honesty made for much easier and successful shoots, so I got lots of repeat business and referrals based on the idea that I could be trusted to tell the truth to everyone and get the job done smoothly and without undue stress on anyone. 

We did a lot of fashion catalogs in the 1990s, and they were notorious for sending out their own very inexperienced “producers” (fashion catalog production was considered an entry level job in NYC back then), yet they conveniently didn’t put any money in their budget (or so they told me) for us to be paid for most of our local production work that was actually necessary to make the shoot go smoothly.  Their hope was that they could rent our motorhome, have us set up their shooting locations, hook them up with our best local people, and then turn them loose on our town for a week or two even though they had never been here before without charging them another dime for the entire shoot!  Their “logic” was that once everything was set up during the 2-3 prep days they paid us for, they had us “on call” for a week or two to work for free on any last-minute changes the client or photographer might dream up!  And believe me, there were almost always lots of questions, changes, last-minute requests, ad infinitum to keep us busy throughout the entire shoot.

After a couple of shoots like this I learned my lesson and was honest right upfront and said that this business arrangement was unacceptable.  We needed at least a few thousand more dollars to cover the inevitable shit that was going to hit the fan when the crack-smokin’ creatives hit town, and it was simply an inevitable part of the “creative process” that shit was constantly changing with the majority of clients.  I got some “how dare you who is below us on the business ladder presume to dictate terms to us,” but I quickly pointed out that I ran my own business and would gladly turn the job down if I weren’t being paid enough for the work.  In 90% of the cases, they would begrudgingly pay up because they knew I was telling the truth and that earned me a certain amount of respect for not being a dumb schmuck from the desert as the New York fashionistas sometimes viewed us! 

I could cite a few hundred other examples of client and fellow producer BS, but I essentially learned the high value of honesty in business by observing the chaos and bullshit that was often the result of the dishonest people running the show.  I was on some of their shoots as a location scout/manager, and even though I made sure my department was run honestly (despite the best efforts of the lying sacks to lie to me and get me to lie to others for them!), and that resulted in less stress on my location owners and I, and most importantly led to me being invited back, which had HUGE value at the end of the day.  My reputation for honesty meant that I had literally dozens of homeowners (and probably hundreds of other location owners) who would turn me and my crew loose in their million-dollar homes for the entire day based solely on the fact that they trusted me and could take me at my word.  I would tell the property owner up front if a given client were likely to be a pain in the ass and would give the them a chance to say no to a project even if that isn’t the answer I wanted.  But what was interesting was that 95% of the time they said yes to one of my more pain-in-the-ass clients BECAUSE I was honest and they kind of felt bad for me and wanted to help me out for being honest with them.  Karma definitely exists in the business world, and honesty breeds good karma which in turn breeds trust and success.

The same thing was definitely true on the crew and vendor side of the equation as well.  Even though the crew and vendors who technically below me on the hypothetical “food chain” because I was paying them (which wasn’t my philosophy as I mentioned above), I was always brutally honest with them about the project and the pain-in-the-ass level of a particular crack-smokin’ creative upfront.  It was important to me that everyone knew what they were getting into from the start because realistic expectations all around meant that the shoot would run as smoothly as possible with the least possible “attitude” from everyone on the proverbial “production wheel.” 

Another important karmic effect of being brutally honest with my crew and vendors was that the best people would always want to work with me.  Not only was this essential for long-term business success, but it made my business life much less stressful.  Honesty all around and the resulting trust meant that I could explain what was needed once and turn everyone loose knowing that they would give it 100% effort and be honest with me if there were any issues or problems that needed to be worked out.  And going right back to the beginning of the story about the lying clients and producers who claim to have “no money” or a “low budget,” I always made sure I demanded and budgeted enough money from the start to make sure my crew could do a good job and be fairly compensated for their hard work. 

In my production world, I took good care to make sure there was as little “shit” as humanly possible, and I would never let it “flow downhill” onto my crew and I. I always considered it part of my job to fling that shit right back upstairs before it hit my crew. And I’m eternally grateful for the good karma and financial success that was the end result.  As crappy as my health issues are right now, I can’t even imagine what they would be like without so many good friends looking out for me, many from work, and I feel really bad for anyone trying to navigate a nasty illness like this without having any money to take care of things.  I’m beyond grateful for the fact that I have an abundance of friends and money to take care of myself the best I can and find as much peace as possible.  Life really is connected in a lot of ways we don’t expect, and Karma can be either a bitch or a sweetheart, depending on how you treat her! 

The Tao of Seeing Death Coming–A Blessing or a Curse?

It’s often said that people are better off not seeing death coming because death can obviously be a very unsettling and sometimes depressing idea, particularly if it involves suffering dragged out over a long period of time.  I think we’ve all heard multiple variations of a phrase like “I hope I go suddenly in my sleep” from a stroke or some variation of a quick, painless death, and most of us have probably even said it at lease once or twice ourselves.  I know I have. 

Fortunately we live in the modern era where medical science can alleviate some of the suffering with pain meds, surgical treatments and that type of thing, and death doesn’t have to be quite as painful as it was 100 or 200 years ago.  Imagine having “doctors” (and I use the term loosely!) cutting off limbs with no anesthesia and shit like that!  Hell, the person removing your limb and trying to make sure you didn’t bleed to death, die from an infection (before they knew what caused them!) wasn’t even likely to be a doctor because you probably hacked up a limb working on your farm, and the nearest doctor was a few hours away on horseback!  A friend or family member would have to “wing it” on the fly, and I can’t imagine how brutal things must have been in say the 1800s.  It’s absolutely hideous to think about and makes the pain I’m feeling now pale in comparison.

Even in the modern era, people do still suffer incredible pain from certain illnesses and even their potential treatments.  I’ve heard that the pain and suffering caused by the side effects of chemotherapy can be worse than the cancer itself.  I’ve personally suffered a lot of physical pain from my disease and additional pain from both prescription drug side effects and herbal protocol reactions.  (No, because it’s “herbal” or “natural” does not mean something is automatically harmless or won’t mess with you.  Plenty of toxic poisons are “natural.”)  And it’s obviously very difficult psychologically to deal with the idea that you stand a good or pretty much guaranteed chance of dying from your illness, and that stress is obviously a constant weight that constantly chokes your psyche.  But you still have some time to experience both suffering and joy.  I read something another victim wrote about ALS “feeling like you’re being buried alive” and another that wrote “it feels like lead is flowing through your body and it’s slowly getting heavier.”  Both of these descriptions are sadly quite accurate, but I still get to have joyful moments with my friends and family as the dying process evolves.

In contrast, many people are suddenly diagnosed with a disease and told they have only a few weeks to live.  I can’t even begin to imagine the level of stress involved in having only mere weeks to “get one’s affairs in order” and try to say goodbye to all your loved ones.  I sure as hell couldn’t get all that done, and I’m a “get shit done” kind of guy!!  As I’ve said throughout my writing, I’ve been lucky enough to have a life filled with so many awesome people that I wouldn’t be able to say goodbye to everyone, tell everyone how much I love them, deal with the legal and financial aspects of death, much less have the time to ruminate and reflect on my wonderful life and write a few hundred pages worth of memories about it!  Sure, the physical and emotional pain of seeing death coming totally sucks, but not having the opportunity to reminisce and write your own swan song of gratefulness probably sucks even more.  Hell—even if I die suddenly in my sleep tonight from an unexpected or yet unknown condition completely unrelated to my ALS, I’ve had the opportunity for many months now to deal with death in my own way.  And as much as it hurts at times, not having a chance at all or trying to do what I’ve done in the past year in a mere month or not at all would be far, far worse in a lot of ways.  I’m certainly not sure whether life is simply a series of random events or something with a higher purpose, but I started writing this blog because I needed to wrap my head around what was happening to me and if there was some cosmic reason I got ALS and what it all meant. I sent the text thread below to my friend Jean discussing this very thing and made a note to myself to think and write about it.

As a Taoist, I’ve got to look at life and death as two sides of the same coin, and experiencing both to the fullest is truly a blessing rather than a curse in a lot of ways.  I’ve said WTF to a lot of things in life, and why should my inevitable death be any different?   I’ve experienced an outpouring of more real friendship and love than I ever thought possible in recent months.  I’ve cried together with many friends knowing that we will genuinely miss each other greatly.  I’ve remembered cool happenings and stories long forgotten and been reminded of many others I had forgotten by friends who shared their fond memories with me.  I wouldn’t have experienced any of these things if I died suddenly or even on a few weeks’ notice.

For me the biggest challenge is making the decision about when to go.  If I wait long enough, the ALS will decide for me, but I don’t really want to end up like these people in the photos below just to hang on another year.  The decision is made infinitely more difficult by the fact that I love life so much.  I want to squeeze out every last drop of joy, fun, love and minute of experience from life, so that makes it that much harder to say goodbye.  It’s a really delicate balance in terms of how much pain and suffering is too much versus reaching for a few extra moments of joy.  The million-dollar question is whether having the power to make that decision is a blessing or a curse. 

My friend Denise recently posed a really interesting quality-of-life question to me recently.  Her question was: “If you had a choice between living one more year of life at your physical peak a few years ago versus five more years in your current state, which would you choose?”  My first response was kind of snarky, although it makes sense in a way.  I replied: “How about a compromise where I get to live three years limping around on a cane, but actually being able to work, drive, go out of the house often, hit the gym, etc…?”  My next thought was of course that I would take one quality year over five more painful years, but I’ve got to say that the more I think about it, the harder the question becomes to answer.  I have a lot of bad days and few horrendous ones, but there are some not-so-bad days and great moments in there too. 

I’ve also thought more about how a lot of other people suffer pretty much in silence (or not—Hahaha!) throughout their entire lives, yet they somehow have the will to stay alive and keep suffering for decades.  I’ve been thinking recently about my cousin Michael and a friend Sandra’s son David who both suffered from schizophrenia since it kicked in for them during puberty.  Michael lived to be about 45 and died from chronic alcohol abuse as his remedy to fight the imaginary voices in his head destroyed his liver.  David endured about 10 years of suffering before he died, and he struggled constantly with the exhausting side effects of the meds versus the other option of daily mental torture at the hands of schizophrenia.   I’ve known others who are chronically anxious and depressed for most of their lives.  They haven’t had anywhere near the amount of enjoyment I’ve had, and after a few bad reactions to meds, I can’t even imagine living most of your life feeling that way.  And then there are many others who live pretty boring lives (by my standards) and really don’t seem to experience a lot of joy, happiness, pain, suffering, or much of anything at all.  I do think about that as write about my life, and even if the end is shitty, I would never trade my “55 rock star years” for 85 or even 95 boring-ass years!

I’ve recently been thinking too about others who have lost family members and friends far too young.  My best friend Kevin and Sandy’s son Ryan had a rare birth defect called Trisomy 18 which took his life at only 9 months old.   My high school friend Chris lost his brother in his 20s in a windsurfing accident when Robbie had an epileptic seizure.  My good friend Robert nearly died getting hit by a car on his bike when he was in his early 20s, and he’s probably had at least a dozen different prosthetic legs during the ensuing 40 years.  And my friends Tim and Kathy’s son Luke was born with some cognitive birth defect so rare it doesn’t even have a name!  But Luke has been going for 26 years with the mind of a kid aged 9 months to a few years old, even though he’s now in the body of a full-grown adult.  I know it’s been quite a challenge for Tim and Kathy to care for Luke all these years. 

Geez—What do I have to be so sad about?  I’ve been lucky enough to live many decades with many moments of pure ecstasy and very little pain.   The worst health problems I’ve ever had were some asthmatic allergies as a kid and a couple of minor injuries in the gym.  Hell–Both my parents are still alive and they are almost 90!

What all this has made me realize is that I probably should have had a lot more empathy for others over the years.  I’ve received an outpouring of empathy since my health went south, and I think I could have been there more than I was for some of my friends over the years.  I’ve always been kind of an energetic Type A personality who typically focused on my own business and my own pleasure, and I don’t think I really fully related to the pain others were going though as much as I should have. 

That said, I think I’ve always been an honest (probably to a fault—Hahaha!) fair, open-minded person that has tried to be a good friend to everyone (when I wasn’t too busy working or hanging with other friends!), so hopefully karma will be good to me if such a thing ultimately matters in the universe.  And seeing death coming has also allowed me to become more generous and start helping others personally and financially as well.  I’ve set up a trust to take care of my parents.  I’ve given away some of my prized personal possessions to friends who will really appreciate them, and I’m thinking of how I can help others with money I’ve saved that I’ll never be able to spend.  And it makes me feel good each time I do it, and I’ve honestly been more motivated to do that by all the unselfish love everyone has shown me.  You guys taught me the largest lesson of love late in life (how’s that for alliteration!), and I’m going to do my best to pay it forward as much as I can in the time I have left.  Life is a delicate balancing act, and I’ve had so much of the good stuff it’s probably just my turn for some pain.  I’ll just hang in there as long as I can and grab all the joyful moments I can…

Love and Sex in the 1980s– “Barely Legal” Meets “Older Women”

If you’ve read my piece about learning about sex and love in the 70s, then you know things began with me learning about sex from stone-age things like magazines and of course I did the usual experimentation with a couple of girlfriends in high school.  I’m still debating whether to tell any of those stories since we were minors (although what the hell–It’s not like I’m going to live forever!), but I feel a little safer in the modern era where information never dies talking about my two girlfriends from the 1980s when I had moved to Arizona at age 21. 

If you’ve read my story “No Guts, No Glory” then you already know that I met both of my serious girlfriends Cindy and April on the dance floor at clubs listening to live music.  One thing that was very cool about both of them was that they were real music aficionados like me.  We all liked real music played live by real musicians.  None of this crappy “dance club” plastic pop music would cut it for any of us.  I was literally out at clubs listening and dancing to live music 3-5 nights a week for most of my 20s, and I played in bands as well at times. 

I met April first because we used to follow a reggae/ska band with a rock edge called The Effects.  There were a half a dozen other bands we followed as well, but this was the favorite for both of us.  As I said in my other essay, we met on the dance floor constantly, and she was a cute Asian chick so I was definitely interested!  I was only 21 at the time, and I really couldn’t tell her age (not that Mr. WTF would have cared anyway!), so I did my best to flirt and hit on her.  What I didn’t know initially but she eventually told me was that April was 36 at the time!  She didn’t look it but certainly got plenty of attention from guys more in her age bracket.  Actually, she was quite the outgoing type and got plenty of attention from everyone!  But I remained undeterred and continued dancing and hanging out with her, and I was the only guy who could keep up with her on the dance floor.  We were both WTF types who just liked to have fun at the live music clubs.  I tried for at least several months to get her interested in more, but we remained just dancing and partying buddies for the time being.

As I said in my other story, I met Cindy at a Big Pete Pearson show because we were both big blues fans.  Cindy was somewhat serious about school and not quite the party animal I was, and she was actually 27 when we met at Tony’s New Yorker.  That said, she loved music and dancing too, and she ended up making the first move by having our mutual friend Harmonica Bob introduce us and buying me a beer. (One of the reasons I love older women–They weren’t shy back then.)  We danced the rest of the night away and ended up spending the night together at her house (lucky me!!!) 

Cindy must have woken up before I did and was probably looking at me sober in the morning light thinking: “Holy shit—Is this guy even 18?!”  I did look really young for my 21 years, and even a 6-year age difference is already a big deal when you are in your 20s.  (FYI–The drinking age in AZ at the time was only 19, so anything was possible.) Cindy apparently had to be sure I wasn’t lying about my age, so she went into my wallet and pulled out my driver’s license while I remained blissfully unaware sleeping in her bed.  She lived in a house with 3 roommates and took my license out to the kitchen so they could all have a look in the daylight.  Now it’s important to know that in those days (1984) an Arizona driver’s license was filled out by hand in one’s own handwriting, signed by you, and then scanned, printed, and issued to you by the DMV.  Well, my birth year was 1962, but a piece of the “f” in my last name below the year extended into the “2” in the year making it look like it could be a “4.”  I had never thought about it before, but when I looked later I had to admit you really couldn’t be sure either way. 

By the time she came back in the bedroom I was starting to wake up, and we engaged in some morning after small talk before she “popped the question.”  I must admit I was rather shocked when she simultaneously showed me my license and asked whether that was a “2” or a “4!”  I told her truthfully that it was indeed a “2” and explained that I had simply signed the “f” in my name so that it accidentally looked like a “4” and I could understand how she might think what she had.  At this point, I had woken up enough to begin wondering what the hell she was doing in my wallet without asking in the first place, but I can say that I was in no mood to start a fight with a sexy older woman who took me places a mere few hours ago that this 21-year-old had never been before—Hahahaha!!  If she was a little nosy, I sure as hell didn’t care as long as I could get another date with her! 

Fortunately, I had passed the age test, and Cindy & I started dating on a regular basis.  I did find out a few weeks later though that her roommates’ secret name for me had been invented that morning and I henceforth became known as “Barely Legal” to them—Hahahaha!!!  I was jealous of Cindy’s roommate Chris who gave me the nickname because his nickname was “The Centurian.” Chris claimed to have banged over 100 women in his 40-some years on earth, and judging by the parade in and out of his bedroom across from Cindy’s I couldn’t call him a liar!  In my young mind his nickname should have been “The Inspirer!”

Blackface Jim (you sure couldn’t do that today–Hahaha!), Cindy the Witch, “Mr. Barely Legal” Me the Bee, and “The Centurion” Chris. I wish I had more pics of us, but it was a different era!

Cindy and I hit it off quite well, and in a few months or so I asked if she wanted to be my girlfriend.  I was honestly shocked when she said “no” but that we should continue dating, be open to dating others, and see how it went!  We got along great, loved the same music, always had a blast hanging out, and the sex was definitely happening for both of us, so I was somewhat confused and frankly a little hurt.  But I got over that fast enough—It wasn’t like the fun or the hot sex slowed down, so what the hell?  I was young and just wrote it off to me not understanding “older women.”  Maybe I was just a fling for her, but what 21-year-old could bitch about that?

The beauty of this scenario was that I was still free to date other women, so of course I redoubled my efforts on April, my other favorite party girl!  Well, April knew I was dating Cindy, and I’m not really sure why, but she eventually decided that if some other “older woman” liked me that I must be worthy for some reason and wanted to at least give me a try.  Sooooo…One thing led to another and before long this young dude had a 27-year-old and a 36-year old showing him the “ways of love!”  And I don’t need to tell you how grateful I was to have not one, but two super fun, sexually experienced women keeping me busy almost 7 nights a week.  Talk about nirvana!!!

My nirvana continued for a couple of months, and April knew I was also dating Cindy (April was dating other guys too, including her 18-year-old neighbor half her age!), but Cindy didn’t know I was hanging with April as anything more than a dancing friend at the live music clubs.  But to be clear—I wasn’t cheating or anything.  I had asked Cindy for an exclusive relationship; she had said no to that, and that it was fine to date other people.  So I wisely kept my normally big, honest trap shut for a while and went along with the flow.  There was one Saturday morning when April and I were out having breakfast and shopping on Mill Ave. and we almost accidentally bumped into Cindy though.  April came rushing nervously back to me after wandering into a store telling me that Cindy was in the same store!  My response was to shrug and point out that nobody was doing anything wrong, but I guess women have an intuition about these things that I sure as hell didn’t at the time.

That incident did get me thinking though about whether I should tell Cindy or not.  It’s my nature to be honest and I would have felt better with everyone knowing what the score was.  And it was getting steadily harder to schedule two women every week without complete transparency all the way around.  So after a couple of months of nirvana, Mr. Dumbass blew it and casually let Cindy know about April one day when we were scheduling our upcoming week of fun at the clubs.  Cindy was a bit of a “hippie chick” in those days; she hadn’t mentioned my exclusivity offer in the several months since I made it, so I mistakenly assumed that it just wasn’t important to her and I honestly thought it would be no big deal.  Boy—was I wrong—Hahaha!!  It just goes to show how naĂŻve a young guy can be and how little I really knew about women.  The minute I opened my mouth and inserted my foot, I got an earful about “how could I do that, and with HER?!!” and a bunch of other stuff I won’t go into detail about.  

The end result was pretty good though—Cindy immediately changed her mind about my boyfriend/girlfriend offer, and we moved in together in short order!  We actually were quite a good couple at the time, and we continued our fun life together sharing musical stuff, hanging out and partying, and of course the loving got even better as we became more intimately acquainted.  We both had such large record album collections that when we merged them together, it took up half the living room!  Fortunately, neither of us gave a shit about television and didn’t own one, so we spent a couple of years going to school, working, and having lots of fun together! 

My current music collection, but mine and Cindy’s was about like this (minus the CDs of course!)

Cindy used to live in Flagstaff and took me on several trips up north for my first experiences in the beautiful mountain woods.  She had a nice Ford F150 pickup truck, and I can still remember camping on a mattress in the back of the truck in the open air.  We eventually broke up when Cindy graduated and got a job in Sedona but continued to reconnect every once in a while for some friendship and fun (lucky me!)

In the meantime, April had gotten serious with a guy close to her age, they had a son Alex together, and she dropped off the radar as my club dancing buddy.  She had taken it well when Cindy gave me the ultimatum.  I think she pretty much laughed at my youthful stupidity, and she wasn’t in love with me or anything.  We certainly did like each other, but we were pretty much party friends with benefits.   

Fast forward about five years (I was about 26 or so by then), and I ran into April with her man at one of the old clubs we used to frequent.  I knew him from the old days too (his name was Michael and he was in The Effects, one of the bands we loved), so we all just started talking and rekindled old friendships.  It started slowly at first, but I had graduated from college in a pretty crappy economy and was just starting to write term papers for a living (see my piece called “Do You Have the Term Paper Blues?” if you’re curious…) and was also ( believe it or not!) a babysitter for another friend’s kids on the side.   April mentioned that they sometimes needed a babysitter for Alex and voila!—Our friendship was ramped up initially because of Alex and my “babysitting skills”—Hahahaha!!!

Unbeknownst to me initially, April and Michael were having some issues, and I eventually became more her friend and confidante than Michael’s.  I won’t get into the gory details on a public blog, but I will admit that April and I started rekindling the old flame, and I am ashamed to this day that I did that to Michael, who was also my friend at the time.  I had been cheated on, and I already knew that it didn’t feel very good, and I’m still very sorry I did it to someone else.  That said, I think I was a “soft landing” for April to get out of a bad relationship, and we ended up as boyfriend and girlfriend for about a year and a half.  We moved to my home state of Wisconsin for a year, and it was April’s first time in her 44 years living in a snowy climate!  While we were there, I joined the best band I would ever be in, and April went out to many of the Brave New Groove gigs and danced for us all night long. The gringo Polacks in Cheeseland didn’t know what the hell to make of April! Some things never change… 🙂

I’ve never had my own children, and it was very cool for me that Alex lived with us for that year in Wisconsin.  He was about 3 at the time, but he knew me quite well since I had been babysitting him since he was about 9 months old.  That part was pretty chill—It wasn’t like he moved in with a stranger, but things were a bit difficult for him because he was uprooted at such a young age and I know he missed his dad.  I doubt he remembers a lot of our year together, but I certainly do and I am grateful for it to this day.  He taught me (at age 3-4!) how to play some primitive video game called “DigDug” I think!  There aren’t a lot of photos from the ’80s era with Cindy and April, but fortunately April saved some pics of Alex, and they bring back some great memories of all the fun things you do with little kids. 

Eventually, April felt a little bad for Alex because he missed his dad (and I honestly don’t think she was all that fond of the Wisconsin winter!), so she decided to move back to Arizona after a year or so.  I moved back about 6 months after she did, but the gap in time had made things a little weird and it didn’t really work out on a permanent basis.  I started working in film and photo production shortly after I moved back to Arizona (see “It Beats a Real Job” if you are curious about how that 28-year accident changed my life!), and I met my future wife Sandy on a fashion shoot in 1992. 

April wanted to remain friends but that didn’t really work as Sandy and I got together, but 20 years after that, April and I became friends again, and we are still friends to this day! Cindy and I are still friends as well, and I’m very grateful to have both of them as friends to this day.  I don’t think there are a lot of guys who can say they are still friends with their girlfriends from decades ago unless they have kids together.  Cindy and April have both reached out to me with kindness and concern since I became ill, and April and I have even enjoyed a few music shows together like the old days.  We also went out to dinner with Alex and his girlfriend Sami, and I’m glad to say that he turned out to be an awesome dude! I’m a lucky guy in so many ways…

Living in Both the Low-Tech and High-Tech Eras was Amazing!

I actually started out writing about this topic before and got sidetracked into how we learned to drive back in 1975.  So the first couple of paragraphs will be similar, but I’m not going to talk about driving much at all.  The basic point about driving and technology was that in the low-tech “olden days” you had the freedom to go anywhere you wanted because nobody was tracking you with GPS devices, etc.  Hell, they didn’t even have cameras on the roads back in those days, and the best anyone could do was check your odometer (assuming it worked, and that was pretty easily remedied if you were inclined to!)  The downside was that there was no Uber or Lyft, and if you were out partying you damned well better have great DUI skills because that was the only way you were getting home. (I’m contemplating that essay right now, but my thoughts on that topic will piss a lot of people off in the high-tech era!)

That said, I’m actually quite grateful to have grown up in what were really two distinct technological eras.  The reason for that is that both eras have allowed me a great deal of freedom though in considerably different ways.  Everyone who knows me knows that I’m a freedom lover, and I’m going to do my best in any era to have as much freedom and fun as humanly possible!  I’m also kind of a Taoist at heart, and there is always going to be a balance between the positives and negatives of any given thing or situation, and technology is certainly no exception to that.

Of course human technology has always been advancing, and things were obviously different between birth and death for our parents’ and grandparents’ generations, but the rate of technological acceleration seems to have gone off the charts in my lifetime.  I’m amazed at certain things, and I’ve probably said to at least 1,000 people that if you had told me when I was 25 that I would be able to hold a tool in my hand (as I wave my iPhone around) that can access almost all of the world’s knowledge and communicate with over a billion people via the spoken word, the written word, photography, video, music, and ALL PRETTY MUCH SIMULTANEOUSLY, I would have thought you were crazy.  And all of this for under $1,000 and about $50/month.  Wow…Talk about freedom!

The interesting thing about the technology of the 1960s-2000 and 2000-present is to me the way it has impacted the amount and types of freedom I’ve experienced in my life.  Back in the “old days” of the pre-PC era, there was a great deal more personal freedom in many ways because nobody could “track” you, and there was no digital history of what you were doing.  It’s been said that once something is online it lives forever, and I think that’s going to be pretty much true until the world as we know it ends or changes in some very drastic way.  On the other hand, the ability for immediate personal expression and connection to virtually half the people on the planet is a hugely liberating thing that gives even a lone individual degrees of freedom nobody could have imagined before the modern technological era. 

When I was growing up in the low-tech era, there was so much anonymity that I could easily afford to have a WTF attitude and take more risks in a variety of ways.  You could get drunk and say whatever the hell you wanted, and the only people who knew about it were your friends and other people who were actually physically present.  And if you were at a party or a bar where more off-the-cuff conversation and behavior were likely to happen, chances are that the others in the room were in a similar state and would either laugh at or join in any stupidity you might exhibit, or at least wouldn’t remember it very clearly the next day!  Hell—even if you offended 100 people (and most of them probably wouldn’t even know your name), in a week or two all would be forgotten and perhaps most importantly, THERE WERE NO CAMERAS IN EVERYBODY’S POCKETS AND HANDS to provide a permanent record of any stupidity you may have committed.  Not to mention, there was no internet to post it on so that your stupidity (or even just outside-the-box self-expression) could INSTANTLY BECOME VISIBLE TO MILLIONS OF PEOPLE FOREVER. 

The worst that could happen in the “olden days” was that a small circle of your friends would remember “the X story” and every once in a while you would have to hear something like: “remember when Eric said or did such-and-such to so-and-so, and the other person did this or that?”  And everyone in the room might re-live a laugh at your expense, but that would be the extent of it.  Hell—My attitude was and is so WTF I actually enjoy making other people laugh, even if it is at “my expense.”  I’ve told some of those stories here, and I want you to get a charge out of them and think, “that dude is kind of crazy—I would never say or do that!”  (But I’ll bet some of you wish you had—Hahahaha!)

Now think about the old days relative to the all-knowing modern era for a minute.  I think it’s safe to say that we’ve all heard stories of people who did one thing that wasn’t necessarily even “wrong” in everyone’s eyes had their entire lives negatively impacted by one foolish moment or even worse, a false accusation.  I have a friend whose son was falsely accused of something sexually inappropriate by a crazy young woman who has accused at least 4 others (that I know of!) because she likes the attention of being a public “victim.”  He was temporarily banished from his college campus and only his parents spending over $50K on a really good lawyer got him back in school.  And he went through a shit ton of emotional trauma that he didn’t deserve and could negatively impact his psyche for life. If something like that had happened to me at age 18, I sure as hell wouldn’t have had my WTF attitude and nearly as much fun in life!

Now I’m certainly not saying that all accusations are false (but I know this one was—I’ve seen the digital evidence!), and there has already been a ton of stuff written about this topic online, but think about how modern technology has negatively impacted one’s propensity to take a chance and have a WTF attitude if you don’t even have to actually do something for someone else to say you did in front of THE ENTIRE PLANET.  That’s a little scary to me.  If a future employer can “Google” your name and find out about something foolish, wild, or a little “outside the box” (or untrue!) decades later and not hire you, I would say that definitely inhibits one’s freedom to take some risks and enjoy life to the fullest.  Fortunately, a lot of people are actually human and regularly say WTF anyway.  Modern technology just makes the risk that much greater.

Another area that has been impacted by modern technology for both good and for ill is creative license.  The propensity for good in the high-tech era can be found in the freedom to create whatever the hell you want and make it available to the world on a moment’s notice.  Back in the old days, to make a video, record a song, or write a book and make it publicly available took a huge amount of time and money, which meant that corporate interests tended to exercise much more control over the creative process.  And you generally couldn’t get it done without a pile of money! Although this was the case, corporate interests like record companies, etc. really didn’t care about the content itself as long as it sold and made them money.  In a way, this gave the artists a lot of creative freedom to say WTF, because they knew their audiences and what they liked.  And the old cigar-chomper guys in the office didn’t really look too closely at the creative content while they counted their coin…

Of course there were certainly do-gooder censorship types who would raise a stink in the local media or in Congress once in a while (anyone remember Al’s wife Tipper Gore trying to rate/censor “obscene, violent, sexist, insert your evil adjective here rock music in the mid-1980s?).  My idol Frank Zappa actually went in front of Congress during the hearings for Tipper’s bill (and she wasn’t even a legislator, but her husband was a senator, so I guess that was close enough to censor rock ‘n’ roll!)  But the end result of this was kind of ho-hum, and a few heavy metal albums were rated as “nasty” in some form.  Sure, some parents probably became more aware of what their kids were listening to, but most parents in that era didn’t like rock music so they would pretty much ignore it.  Mine sure did even though I played it constantly.

Here are a couple of songs with lyrics by a couple of my favorite artists that were released in 1968 and 1978 respectively.  The first one is the Rolling Stones’ “Stray Cat Blues.”  The gist of it is that the protagonist Mick Jagger is trying to entice a 15-year-old girl and her friend to “come upstairs” to his room for some wild sex.  In the live version of the song, Mick changes the girl’s age from 15 to 13.  Somehow I can’t see this happening today without a huge amount of instant outrage on social media, etc… (On second thought, perhaps all those wealthy executives and powerful politicians who hung out with Jeffery Epstein on his “kiddie island” might not object to it. Or to Hitlery killing him either–But I digress…) 

stray cat blues – – Video Search Results

The second song is Frank Zappa’s “Bobby Brown,” and the gist of this song is that some arrogant jock dude (Bobby Brown) “fucks this dyke” who cuts of his balls and turns him into a “homo.”  FYI—I bought the Rolling Stones’ record when I was about 15 and the Zappa record when I was 17 or 18.  Ahhh…The creative freedom of the ancient age when nobody was the wiser… Have a listen if you dare. But be prepared to be “offended” even though the song is intended as a complete satire on arrogant Joe Jockstraps, who are certainly a safe target these days–Hahaha! Hell–I even played this song in front of audiences a few times in a band…

youtube bobby brown frank zappa – – Video Search Results

Now, I’m not of fan of most modern music (mostly because they play it with computers instead of real humans creating a real groove with real instruments, but hey—I’m an old guy who used to play actual instruments…), and I’m guessing that equally nasty lyrics abound and you can find songs like that on the internet.  But, much like the person who holds back from saying something “offensive” or having a WTF attitude, I think that the threat of instant backlash on the internet is going to create a lot of self-censorship even as the songs are being written, particularly if the goal is to sell as much music as possible in whatever format they sell music in these days (digital downloads?)  

I’m guessing this self-censorship is similar to the person at the party who doesn’t want to take a risk because everyone has a device connected to the internet, and one mistake could ruin a career or at least one’s social life.  I think this is especially true in the current PC era where every snowflake wants to have their 15 seconds of fame on the internet signaling their virtue and being “offended” by something racist, sexist, misogynist, ad infinitum, ad absurdum…  Feel free in the comments to point out that I’m completely wrong though.  I would love to hear some edgy new stuff very soon!

And finally, the moment you’ve all been waiting for—Dating in the low-tech and high-tech eras!  The first (and rather obvious) thing I must point out is that the advent of modern technology did not eliminate the old school ways of dating and mating in any way, shape or form.  The great news is that even with Match, Tinder, Bumble, Fumble (yeah, I THINK I’m kidding on the last one—Hahaha!) and 100 other dating sites and apps, you can still meet new people the old-fashioned ways at work, at bars, on the dance floor (one of my faves!), in a store, anywhere else in person, or being “fixed up” by a mutual friend (how I met my last girlfriend Sherry if you read our stories in “Imagine”).  So technology hasn’t really detracted from the dating scene at all but only added to it.

I’ve done my fair share of dating over the recent years when I was single, and I’ve met fun, interesting, beautiful women in both low-tech and high-tech ways. They both seem to work pretty well.  Obviously, the advantage to low-tech is that you usually meet in person first, so you already know if there is a physical attraction at least.  Photos online aren’t always accurate (often by design, and I worked in advertising so I ought to know!), and people can spend a lot of time tweaking their profile so they sound more attractive than they really are. 

On the other hand, the high-tech method of meeting potential dates is that you  literally have the opportunity to meet 1,000 times more people than you would just going about your day, and you can pre-screen people based on 50 different characteristics.  I was always very open-minded in terms of age, race, occupation and stuff like that, but I did prefer women who were really into good music or had other common interests like hiking and the gym.  Even though you won’t hit it off with the majority of on-line dates, I liked the social WTF nature of meeting new (and potentially “strange”–Hahaha!) women for happy hour (always my first option!)  I can say that many people tend to overthink this aspect of things in terms of putting too much emphasis on what a person’s online profile says.  Live a little and just say WTF, for Chrissakes!  Life is short–What have you got to lose by taking a chance and meeting someone new? 

OK—You asked for it.  Below are a few G-rated photos of some of the interesting and beautiful women I was lucky enough to meet using both low-tech and high-tech realities in recent years.  But I’ve gotten plenty of X-rated ones over the years too which I never once asked for. (I certainly love a woman who shares my WTF attitude in the modern era! But I won’t post them–Scout’s honor…) So now you know why I’m damned grateful for living in both eras.  Talk about the best of both worlds!  And thank you very much ladies for saying WTF and wanting to meet me.  I really enjoyed your company on a date at the very least and sometimes we hit it off!  What more can a guy ask from life?

I met Marie the low-tech way while I was out walking the Scruffs in our ‘hood wearing nothing but tiny running shorts. She told me later she had seen me before and thought I was either European, gay, or some combination thereof–Hahahaha!!! Our dogs hit it off and then it was our turn!

And if you’ve made it to the end, I’ll point out that with only two exceptions all of these women are all in my age bracket (around 50). (And if you try to guess which ones, you’ll probably guess wrong!) I can honestly say that I felt so lucky to have experienced the “dating life” in the modern era with so many sweet, fun, beautiful women my age. And since I was no longer a boy or somewhat clueless young man, I had the time of my life and I think all of the girls enjoyed themselves hanging out with me. At least I hope so because the real beauty of the man/woman thing for me as a straight guy was the yin/yang vibe of hanging out with awesome girls and simply enjoying some time and life together. (Disclaimer: To each his or her own and no judgement express or implied regarding the sexual preferences of others–Hahaha!!)

No Guts, No Glory

This is a philosophical piece on how freedom and fear are essentially opposing forces in the universe and within ourselves.  The more I contemplate my new life with ALS, the more I am learning about philosophical things like freedom and fear.  I may be a prisoner in my body to an extent I never imagined, but this has motivated me to free my own mind even more and to try and help others by freeing theirs a bit. 

I can honestly say that I’ve had so many experiences for which I’m grateful largely because I haven’t been afraid to take risks, try new things, and meet people all over the various spectra of life.  My default position for most things that aren’t inherently bad/evil is honestly: “Sure, WTF—Why the hell not!”  For those of you who have already read some of my other stories, you might be thinking: “That guy is nuts—I would never be crazy enough (or dumb enough in some cases—Hahaha!) to take psychedelic drugs, smoke weed publicly in a foreign country (or in a US jail cell), go trail running alone in 112-degree heat, or drive around in a snowstorm illegally at age 14 (or hallucinating on LSD!) And you would certainly be right that this stuff would be classified as “risky behavior” by many people.   (And I still have more “risky behavior” stories on the way!)

But the relationship between freedom and fear is more than that because I think many people let fear get in the way of doing things that are certainly physically and legally safe simply because of their own personal insecurities or “hangups” as the hippies used to call them back in the day (even a little before my time!).  A simple example of this might be something I have always loved to do, and that’s dancing by myself in public to live music.  Unlike many guys in particular (it’s certainly more socially acceptable for women in our culture), I’ve never hesitated to shake it by myself even when nobody else is out on the dance floor.  I’ve had friends (though not close friends—they get me) and strangers give me the hairy eyeball as though there were something wrong with dancing if I didn’t have a female dance partner or wait until other people started dancing, etc. 

Of course there were no cameras in the old days, but I always liked the idea of dancing like everybody’s watching! And now everyone’s got a camera, so you’d better be good–Hahaha!

Some thought I might be gay (not that there’s anything wrong with that, but this was long before it was cool!) or that I was just some kind of weirdo who didn’t want to play by “the rules.”  My attitude (often influenced by the 5 beers and other trendy chemical amusement aids) was always that “somebody’s gotta get this party started, and I’m your guy!”  I truly loved the music I went out to hear over 1,000 times in my life.  It made me want to move and I wasn’t about to let some imaginary fear of “everybody looking at me funny” to stop me from having a good time.  And the irony is that a lot of the time, when others saw me out there by myself, they would join in. 

Even better, I ended up dancing with and meeting a lot of fun, beautiful women by having the stones to get out there and be the first guy shaking it!  I actually met Cindy and April, both of my serious girlfriends in my 20s, doing exactly that.  April was someone who would dance alone too, and we would regularly cross paths on the dance floor of our favorite bands like The Effects, Walt Richardson, Small Paul, and others.  We literally became friends for life by meeting on the dance floor repeatedly.  At a different show, Cindy saw me dancing by myself to Big Pete Pearson and the Blues Connection, and it turned out that we both knew Bob Corritore (Big Pete’s harmonica player at the time and now owner of the famous Rhythm Room).  She asked Bob if he knew me, bought me a beer on the break, and we were together for over two years after that.  All because I got myself noticed on the dance floor…   (And there is another story about Cindy and April on the way—Still love you both!)

The lack of fear influenced my career to a huge extent as well.  My friend and former business partner Marc gave me another piece of advice I didn’t mention in my “Film and Photo Production–It Beats a ‘Real Job'” story.  This advice was something along the lines of (I’m paraphrasing a bit here) “If someone on set asks you if you know how to do something you’ve never done before, just say “yes” and figure it out.”  It was probably only my third or fourth job as a flunkie production assistant (PA), and Richard the producer (who quickly became a friend as well) asked me if I would go to Grand Travel and pick up the production motorhome and drive it for the next couple of days on the shoot.  I had never driven one before, but I had seen plenty of geezers riding around town in those giant boats (this one was 34’ long), so I told Richard it was no problem and immediately called Marc to figure out what the hell to do!  I told him I had said yes per his advice and he told me not to worry about a thing.  “If the old geezers can drive those things, so can you!” was his argument, and I couldn’t argue with his logic. 

The Beastly Bounders we used to drive back in the day.

Fortunately, Marc had driven them before, and he gave me a few handy tips and told me the rental place would give me a 90-minute crash course on how everything worked (electrical, plumbing, removing the bed from the bedroom to make room for the wardrobe department, etc.) and that I should take good notes since I was now officially the motorhome PA on the shoot!  I did indeed rise to the challenge and the end result was that this new skill was the impetus for Marc and I buying our own production motorhome and starting a business called Cinemasters together.  We had it for about 8 years, and it was instrumental in me getting a lot of the fashion photo production work I got in the first decade of my career as a producer and location scout.  Simply saying “yes” instead of “no” or “er, ummmm…” literally advanced my career by leaps and bounds and made me a pretty good chunk of change in the years immediately following.  Thanks again for the great advice Marc, and the answer is always “yes!”

I would have to say I took the same approach in terms of personal friendships as well.  It seems that the goal of a lot of people is to find and choose friends who are mirror images of themselves or damned close to it.  While I certainly agree that you need to have something in common for an initial attraction, the rest of your interests, personality traits, philosophical outlooks on life, etc. can be considerably different.  I always enjoyed learning and discovering new interests and new ways of thinking from my friends.  For example, on the political spectrum “Eric the libertarian” is a complete outlier in that probably only 1% of people share my almost anarchist philosophy.  The fact that 99% of my friends disagree with me makes for a lot of really great fun in terms of kicking ideas around, debating, mocking each other in good fun, etc.  And I equally enjoy both the mocking and being mocked!  The only “risk” to being mocked is one’s potentially fragile ego, and you need to get over whiny shit by age 15 at the latest.  As I recently discovered, taking yourself too seriously is a definite waste of the precious little time you really have in life, and you have no idea how much time that is actually going to be!

On the social side of things, I’ve got friends who range from traditional mainstream religious monogamists to atheist polyamorous swingers.  (If you’re lucky, I might decide to tell you more about them–wink!)  I’ve got friends whose main interests revolve around outdoor stuff like camping, fishing, and building stuff with their own two hands to others who can’t change a tire on their car but speak several languages and read as many weird books as I do.  I’ve got friends who are as into musical diversity and esoteric shit in the extreme (love my ZappaHead friends!), while others listen to musical garbage on the radio that would put me to sleep.  But I can assure you that I have other things I love about my musically clueless friends, and we focus on that stuff instead and I occasionally mock their lack of musical knowledge or taste.  It is pretty safe to say that if you don’t have a sense of humor (no matter how weird), then I probably won’t be a good friend for you!  At the end of the day, I urge everyone to take a chance, say “yes” to something new, and remember that you only have one life to live.   The only thing you have to fear is fear itself, so get out and dance, dammit!!!

NO GUTS, NO GLORY!!!

Friends for Life

I’ve mentioned my gratefulness for all of the love my friends have shown me many times on my blog, but I’m luckier than most people in that I can honestly say that I’ve had (and still have, of course!) at least a dozen “friends for life.”  These are generally people I’ve known between 35 and 40 years, and what makes them special is that no matter how many years go by, it’s like time stands still for both of us. (At least that’s the way I feel about it.)  For me, the “friends for life” category is special because it doesn’t matter how often you keep in touch—The experiences you’ve had and the feelings you have for one another never change, even as you transform from kids to adults or from young adults into old geezers.  It’s kind of like having a giant extended family except that you get to choose each other rather than being stuck with someone purely based on genetics. My friend for life Richard used to say: “You can pick your friends and you can pick your nose, but you can’t pick your relatives”–Hahaha! Truer words were never spoken.

I met about half of my “friends for life” in high school and the other half within the first few years of moving from Wisconsin to Arizona in 1983. We met in a lot of different ways–Some on the high school debate team (yes, I was a “master debater” as you jocks liked to call us in mocking good fun–Hahaha!), some in class, many in bands, some via libertarian/freedom stuff, and of course some just because we liked to party and listen to music together. Fortunately for me, I have friends for life all across the social spectrum from media types to lawyers to techies to artists/musicians to nature lovers to city slickers, ad infinitum… One of the coolest things about this is that my life has been so enriched by all of you doing the things we love together and learning shit from each other. I’ve been camping dozens of times and to New York City dozens of times. I’ve played in bands with some of you and debated philosophy and politics with others. Some of you taught me practical skills about agriculture and construction, and I taught some of you about music and freedom. And we always had a good time, because if you can’t have fun living life, you’re doing it wrong!!!

Of my dozen or so “friends for life,” some I stay in touch with on a regular basis, typically in the form of almost daily or weekly emails to a group of us.  However, there were times in the 40 years that I didn’t stay in touch with some of these people more than once a year or even every 5-10 years or so.  Once we started yapping again, it was like the multi-year gap had never even happened and we picked up right where we left off.  There are others who I’m in touch with only a few times a year or even every few years, but that doesn’t seem to matter either.  The conversation flows right from the start, and a stranger listening in wouldn’t be able to tell how long it had been since we last talked.

What’s particularly interesting to me about this is that there were never any hard feelings on either side when long gaps in communication occurred.  The close, lifelong connection was simply assumed, and nobody ever had an attitude about its relapse and recurrence in terms of actual communication.  The fond memories were solid, and the heart connection was never in doubt in both our souls. 

I actually have one friend that recently reached out to me that I met in the first grade, so my math says that’s over 50 years!  I met Chris Monty in school, and within a few years my best early childhood friend became my nextdoor neighbor, much to our surprise and good fortune!  We went to the same high school but drifted apart at that point somewhat (but not entirely—read “Learning to Drive in 1975”) because we met new (really additional) lifelong friends there and hung out with different crowds.  We hadn’t stayed in touch literally for almost 40 years, and when Chris heard through the parental grapevine about my ALS condition, he reached right out to me and we’ve been sharing awesome childhood memories ever since. 

We’re both over 55 now, and the last time we talked we were about 17.  But it’s like time never passed, and Chris remembers our childhood with the same gratitude I do now.  Talk about something to be grateful for!  There isn’t any other person on earth I could share those really early memories with, and I’m so glad he reached out to me now.  I have a couple of other friends who I hadn’t talked to more than a few times in the past 25 years make it a point to visit me from my hometown of Milwaukee recently.  What’s been extra cool about this is that all of them reminded me of some more awesome shit I experienced decades ago that I had completely forgotten about!  I’ve added a few new things to my list of gratitude stories, and I’ll do my best to get them out before I can’t type anymore, dammit!

What’s interesting (and sad really) is that I know plenty of people who don’t have a bunch of “friends for life” at all.  We’ve had detailed discussions about it, and they seem incredulous as I talk about a dozen different people who live all over the country as they try to keep all the people I’m telling stories about straight in their minds.  They typically have one or two close friends they’ve stayed in touch with regularly, or they quickly lose the connection with a former “best friend” when they get married, have kids, move, or some other life event. 

When we get to that part of the conversation, it’s my turn to get incredulous as I question why they can’t just reconnect with that person after 5 years and start up right where they left off.  My default position is that everyone does that, but that apparently is not the case! They usually look at me funny as though I’m crazy and utter some bromide about how friendships require constant “maintenance,” and there simply isn’t enough time for all those friends when you’re married, have kids, move, etc.  I’m no psychologist (though I try to act like one sometimes!), but it seems to me that many people may not be focusing on the joyful experiences they had together and instead falling into what I would call the high-maintenance “what have you done for me lately?” mental trap.  I had never really thought too much about this until I started writing about life a couple of months ago to keep my sanity, but I hope some of you think about this stuff and how it relates to the people in your life.  I’ll be honest here–There are a few of my lifelong friends I lost some touch with in recent years, but we did our best to reconnect, and I think we have. And I’m very happy about that!

And please don’t think any of this takes away from the gratitude I have for those of you I’ve only known for a mere 10 or 20 years—Hahahaha!  I love you all as well, and I’ve talked about how grateful I am to all of you for helping me through my life right now—I literally wouldn’t be here without you.  It’s just that our relationships are much more recent and we can actually remember most of our shared experiences, we still live in the same town, and we’ve seen each other with some regularity at work particularly or at least at the occasional party, etc.  (Or you are one of many who have offered to help me, and there isn’t enough that I need to go around.  As I said in my opening message, my situation with all of you being there for me is the definition of a “good problem!”)  And when I first started writing this essay I was only thinking about “friends for life” as people I had known since childhood to age 25 or so, but maybe that’s not the right way to think of it either… 

Writing about shit definitely makes you think long and hard about it; I’ve learned something else about life and about myself, and that’s a good thing. Here’s a text thread I had with my friend Jean that inspired this post. Life is all about perspective and I’m doing my best to learn that…

Peace and Love,

E

Of course, a lot of we friends for life are pictured throughout various sections of my blog, but I’ll throw in a few more just for good measure (and because they’re funny!)

I see a couple of you in here from the Marquette High debate team, Tim and Scoot! I’m the one with my eyes closed second from the right…
Love that family portrait, K-Man!!! Hahahaha!!
Rico the drummer in the powerful “Watts.” Hey, that’s my prop speaker on the right!
My old friend Patti and her old friend Rico.
Kevin & Sandy’s wedding on my birthday in 1993, I believe. I took my new girl Sandy on our second visit and she married me anyway! Bruce and I were the “best men” K could find–Hahahaha!!!
With Kevin, Chris, and “Jersey Jim” and his college buddies in Dayton, Ohio. And my eyes are closed yet again! I wonder what we were doing…
Halloween with Brian in 1982. Like my makeup and ascot? I was having a Mick Jagger fantasy or something…
“The Monk” and the “Choirboy”-Hahahaha!!! That’s Robert’s title for this pic.
Dano, Cece, Ries, and Simone. I’ve known “Dan the Priest” since high school! We played in a band together, and you can check that out in his post “1981 Overture.” Thanks again for inspiring my gratitude blog, Dano!
Brian the Bolshevik Hunter and I during a recent visit…
Tim & Kathy and I during a very recent visit. All my friends have been coming to see me, and I’m very grateful for that.

Happy Birthday to Me!

I’m not going to be my usual yappy self on this post other than to say “Thanks!” to all my friends who sent birthday cards to me this year. I really appreciate your thoughts, and some of them really made me laugh!

From Fitness to Fighting to F*****d

Pardon my “French” in the title of this post, but I certainly can’t say this particular story is about gratefulness in the sense of something fantastic happening in my life like most of the rest of my posts. I’m a realist, and ALS sucks about as bad as anything you could imagine.  But I want everyone to know that I am not going to lose my health and physical fitness battle by going down without a fight on both the medical and personal fitness sides of things.  I truly love life, and I’m a really stubborn bastard when it comes right down to it! 

FYI—This post is rather long and not really intended to be as fun or entertaining as some of the others, but I wanted to do something to increase understanding of ALS from the patient’s perspective.  It’s a long, winding and very bumpy road that I feel obliged to discuss even if I’d rather be writing about something fun like most of the other stuff on the blog.  I briefly explained things in my opening message a couple of months ago, but this is the updated, more detailed version. 

Like cancer symptoms, a lot of neurological symptoms are invisible from the outside, and I completely understand why others don’t really fully understand it.  I’ve had countless well-meaning and sincere friends and relatives tell me that I “don’t look that bad” or they want to be kind to me and take me out to parties, concerts, sporting events and other social stuff because they are just trying their best to be great friends by helping me maximize the time I have left, and they honestly don’t understand all the hidden torture and limitations of ALS and other neurological diseases.  The way I tell people to think of ALS now is a form of “nerve cancer.” I know that’s not technically correct in a medical sense, but it is a term that helps people understand the degenerative nature of the disease. I sure as hell didn’t understand until it hit me, and as I degenerate weekly I have to reach new understandings and adapt as I go. 

The degenerative nature of ALS is really the toughest thing because it’s always going to get worse, but you don’t have any idea which parts of your body will be disabled or how quickly it will happen.  I’ve seen ALS victims who are still limping around but can’t speak a word.  I’ve seen others who are the exact opposite.  I’m one who is losing control of all my muscles from head to toe at roughly the same rate as you will see when I explain my journey below.  Some victims last 10 months, while others last 10 years, and the average is about 2.6 years.  But it’s a hard (and expensive!) disease to diagnose (as you will see), so any “average” is a bit fuzzy in my mind.   So read on if you have a little time or you simply want to know my current status as some of my friends do.  Or skip this one and stick to the awesome pre-ALS stuff in life for which I’m obviously grateful.  Totally your call…

To be perfectly honest, even though I am accepting the reality that there’s a 97% chance that my ALS diagnosis is correct, I’m still bugging every doctor I can get to pay attention to look at obscure infectious diseases, my constantly painful spine and any other ideas they might have.  Something causes these nasty ALS symptoms, and sooner or later someone will figure it out (even if it’s been 150 years since Charcot discovered it, dammit!)  Who knows—Maybe my diagnosis is wrong; maybe something in me will reveal itself if I bug enough doctors to look hard enough, or I’ll be the one in ten thousand whose disease goes into remission and heals for no apparent reason.  Or maybe I’ll be the freaky human lab rat whose symptoms or tests present something in such a way that doctors are able to discover a proximate cause of ALS?  All long shots to be sure, but why give up when I’ve got absolutely nothing to lose?!!!  Imagine the blog I could have if I were some even freakier freak of nature than I already am—Hahahaha!!!  Hell, I wouldn’t need a blog then—The New York Times and the New England Journal of Medicine would handle a lot of the publicity for me. Or I’d be a TedTalk topic…

All my hopes notwithstanding, this part of my story begins in March 2018 when I went to a concert with my ex-GF and longtime friend April and experienced something very unusual, at least for me.  We were at a Rolling Stones’ tribute band concert at a local casino.  We were listening to the band and dancing, and I probably had about 6 beers or so by the time the show was over in about a 3-hour period.  This was nothing unusual for me, and I felt just fine.  We went upstairs to have dinner, and I had a glass of wine and got up to go to the bathroom.  On the way out of the bathroom, I began losing my balance and my body felt like it had had 15 drinks but my mind was pretty damned clear.  I had obviously been drunk at other times in my life, but this was different in that only my body was affected.  I fell down once on the way back to the table and told April no more wine for me!  While sitting down I felt fine, but when we got up 90 minutes later after dinner to leave, my balance problems returned immediately and I wiped out twice more on the way out!  I felt 100% sober by this time, and we both thought that I had been “roofied” by mistake or something weird like that. 

I was home by 9pm or so (it was a Sunday afternoon show), and I still felt a little weak and wobbly, and continued feeling the same again in the middle of the night when I got up to use the bathroom. By the next morning I still wasn’t 100%, and by then I was positive I had gotten some small unintended dose of some kind of drug.  (Does anyone intentionally “roofie” dudes in bars?  Maybe, but the whole thing was just so damned weird!)  I felt a little off for the next few days, and when I went out for a trail run a few days later, much to my dismay, I couldn’t perform a running gait!!!  My right leg just wouldn’t lift up in proper timing with the left (neurologists call this by the very scientific term “drop foot,” but that is a very accurate description!)  I had been experiencing increasing low back pain in recent months, and my first thought was that I had somehow re-injured my already twice-herniated L5 disc.  Needless to say, I was pretty bummed out about that and thought it would get better with some rest, stretching, etc.  Just to see if the rest was working I would try to run a few steps, and I could rarely do it at all!  I did manage to have a mediocre day almost exactly a month later, and I ran my last trail ever on April 21, 2018.  Even that was a slow one (3.5 miles in 51 minutes on a relatively flat, easy trail), and I felt like I had to mentally focus on every step just to get through it without wiping out.  

In hindsight, my neurological problems probably began 6-12 months earlier, but there was nothing glaringly obvious to me until that night in March at the concert.  I had been going to my chiropractor for the low back pain and a snapping, popping neck since September 2017, and I figured it was just something an old guy who liked to run and work out would have to deal with and manage the best I could.  As I think back on that period now though, there was a slight decline in my overall performance in a few exercises, and I noticed an occasional feeling of shortness of breath when there really shouldn’t have been a reason for it.  I also remember occasionally stumbling over a few words with a lots of consonants in them (like my name and the name of my company) and I had obviously said those things at least 10,000 times in the past 25 years!  But I just thought I was an old man with a back problem who was possibly working out too much, and my strength training really wasn’t affected to any great degree.  I was already being proactive there and had designed my workouts so that I wouldn’t put undue stress on my low back anyway.  And ALS, PLS, cerebellar degeneration, or any kind of motor neuron disease was certainly nowhere on my radar…

I asked the chiropractor what he thought, and strangely enough to me, he recommended I see a neurologist.  I thought for sure he would say it was my back because of the pain and previous injuries, but I took his advice.  A week or two later I did, and the neurologist ran me though a bunch of physical tests in his office, some nerve conduction tests to measure the speed of my motor neuron electrical signals, and offered me the option of spinal and brain MRIs, which I did.  He did see evidence of my herniated L5, some degenerative disc disease, and some minor nerve pinching, but given that the initial symptoms had appeared while drinking alcohol, he recommended I stop drinking and see if things improved.  I hadn’t known it, but alcohol is actually a neurotoxin, and given my history as a hard partying Cheesehead, I was pretty bummed out by this medical advice!!  Needless to say, I bit the bullet and followed it, but my symptoms continued to decline in various ways. 

The next major motor skill to go south was my ability to play the guitar, and that happened around July 2018.  I had played for over 40 years by then, and although I could still form the chords with my left hand, I could no longer strum in a rhythmic way with my right arm and hand.  In essence, my right arm had gone the way of my right leg, and I also noticed it was getting much harder to write (I’m right handed).  By this time, it was also getting more difficult to speak clearly at times.  This was still pretty infrequent compared to the leg and arm problems, and I would occasionally have days where shortness of breath was a problem for a few hours at a time. 

At about the same time, I lost the ability to dance.  Besides playing in over a dozen bands, I had seen over 1,000 music shows in my life, and I absolutely loved to dance.  I remember holding onto the band’s monitor speaker at my last show (see below) so I wouldn’t lose my balance and so I could stay out on the floor longer. I was one of those guys who would go out and dance by himself or with whoever was out there. I could literally dance all night, and I loved it! Losing all my rhythmic musical abilities was perhaps one of the most painful things to me. 

The Limping Phase: By the end of the summer, I was limping noticeably almost all of the time.  My co-workers and clients noticed and expressed their concerns.  All of this worried me enough that I figured I better get a second opinion, so I went through another round of physical tests in a different neurologist’s office, some blood tests, and a $3,000 DaT scan for Parkinson’s disease.  The test for Parkinson’s turned up negative.  At this point I thought I better break out the big guns, and I asked for referrals to Barrow Neurological Institute and Mayo Clinic.  Of course, I couldn’t get an initial appointment at either for 2-3 months, but I’m not going to get too far into what I think is wrong with our current medical system.  This is a blog about gratitude, and I intend to keep it that way!

I was beginning to get quite nervous at this point but kept hitting the gym 4-5 times a week. A good workout almost always made me feel better, so I figured I was doing the right thing.  I couldn’t really run anymore, so I switched to low-impact cardio like the elliptical, the stationary bike, and the stair climber because I was more convinced than ever that my increasingly painful back was the source of my problems.  And I continued lifting weights of course, although I was noticing that my right side was becoming about 25% weaker than my left, and I was starting to have increasing right shoulder pain to go along with my ever increasing low back pain. 

I managed to maintain my strength pretty well until about December, and by then I had to do a lot more work on the machines versus free weights because my balance, coordination and core strength were steadily going south as well.  During the last 6 months of 2018, I was able on some days to alternate a limping jog for 50-100 steps with a few hundred steps of walking in between, and I did manage to walk 3 miles or so a few times on flat trails during late 2018.  One other thing that became abundantly clear was that it was much easier to maintain my balance going up a hill or upstairs than down.  I learned that the hard way by wiping out a few times and fortunately wasn’t hurt. 

The Cane Phase: By January 2019, I could no longer walk safely without a cane so I bought a pair of those cool adjustable trekking poles they have at Costco.  I was still working, although I often had an assistant with me on set in case something physical needed to be done in a hurry.  By March I was so slow on set that I realized I wasn’t giving my clients the full value of what they were paying for and decided I had to sell my business and go on disability.  At that point it was a major challenge just to do normal stuff around the house (cooking, cleaning, etc.), my level of fatigue was increasing rapidly, and I just couldn’t move quickly enough to get all my work done. 

By January 2019, I had seen 4 neurologists and 2 internists, and after spending about $30K, I received my first diagnosis of primary lateral sclerosis (PLS), a slower moving but very rare form of ALS.  I saw neurologists number 5 and 6 shortly thereafter, and by March I was pretty well screwed according to a good cross section of neurologists, including a couple at the Mayo Clinic.  I don’t have too many medical photos, but here are a couple from the Mayo Clinic where they injected me with 1,000mg of methylprednisolone a day for 5 days in a row.  OK—So I lied in my “Fatness to Fitness” article.  I did ‘roids 5 times and it cost me $5,000!!!  And the vein stickers on the weekends were newbie trainees.  One of them couldn’t hit my vein after three tries, and I was a dude with about 10% body fat at the time.  My veins were so easy to see and hit that I could have done it myself with my other hand—Hahahaha!

Despite all my efforts to the contrary, I graduated to the wheelchair phase around April 2019.  I just didn’t have the neurological control of my legs and my balance to walk any distance safely at all, even with a cane.  I started wiping out in the gym because my balance was gone, and my solution was of course to work out the best I could in a wheelchair. I had seen other people doing that, and I remember admiring their tenacity, so I tried it myself in April. I worked out a couple of times in the chair with my trainer Dave at The Yard, and I did about a half dozen more workouts at a place called Ability 360, a very special gym geared specifically toward the disabled. I had been there before because I had done a few video and photo shoots there, and I loved both the concept and the people who ran it. You don’t have to be disabled to work out there though, and I would encourage anyone to check it out. It’s modern, beautiful, clean and friendly–Give it a try sometime even if you aren’t in a wheelchair. Exercise is good for everyone to the extent that they can do it! But by mid-May, I could no longer exercise because of the increasing intensity of pain and fatigue as well as the lack of balance and coordination in general. After my last workout of 24 sets in a wheelchair and 10 minutes of slow cardio on a stationary bike, I was exhausted for the next 3 days! As much as I hated to hang it up, I had to. I needed all of my energy just to make it through the day.

So I tried to make the best of it and schlepped around my favorite store in one of their awesome carts. (Costco rocks, and everyone in the pharmacy knows me now!)  In a weirdly prophetic coincidence, I ran across some old photos of myself in about 2013 (long before my disability) mocking people in motorized carts at Scottsdale Fashion Square.  I wasn’t trying to be mean spirited of course–just goofy, but I guess karma really is a bitch!

At least you can fit a lot of shit in the Crip Carts at Costco!!!

Throughout my first year, I was also reading online and investigating everything I could about the medical science surrounding MS, ALS, Parkinson’s Disease, spinal degeneration, infectious disease, nutrition and anything else I though might be affecting my health.  I think I did more research than when I was writing term papers for a living back in the day!  Of course I received a lot of well-meant (but trendy, in my humble opinion) advice from friends about diet being the cause of all evil in the body and stem cells being the cure for everything that couldn’t be cured by a diet.  In that sense, the internet is highly overrated as every nutrition guru tries to hawk their “”nutritional protocol” ( a fancy term for “magic diet”) which can supposedly cure everything from MS to cancer.  And I was extensively tested twice for food allergies, and came up negative for 99% of the edible stuff on earth.  (And there is no toxic mold inside my house—I had that tested too.)

Just for the record, I’ve attached some photos of my typical dietary regimen for the past 8 years.  I normally ate about 120g of good protein, 6-10 servings of vegetables a day, and I had given up alcohol when my neurological symptoms began.  Just for grins I’ve been gluten and dairy free for about a year because I read about something in a medical journal called “gluten ataxia.”  I also tried eliminating various foods for a month or so at a time and took that “Restore” product which was supposed to fix “leaky gut” syndrome and stop the blood-brain barrier from being broken.  Regardless of what I did, my symptoms continued to worsen, and here I am now.  And yes I know that everyone has their religious beliefs in “magic diets” and will find something “toxic” in the foods pictured below, but I was eating healthier than 95% of Americans and honestly don’t believe that is the cause of my ALS.

In spite of my skepticism of both the allopathic and naturopathic medical systems in this country (who can’t seem to cooperate even when their patients are dying!), I’ve explored naturopathic treatments too. I was turned down for mesenchymal stem cell cerebral spinal fluid (CSF) injection therapy in Panama City because they didn’t think it would help me, but approved to try it in Bangkok for about $30,000. To their credit, they didn’t claim it was a cure for ALS–They said it could potentially (or not) slow or halt the symptoms down by a few months if I were lucky, and that they honestly didn’t know why it helped some patients and not others. My thinking was really to try it for the hell of it since it’s always possible that I have been misdiagnosed and that I had nothing to lose but a little money anyway.

The thought of a 30-hour trip to Thailand is overwhelming in my condition, but I would gladly try a similar treatment here in the US–I mean, we’ve got to be way ahead of BFE places like Panama and Thailand in terms of medical technology, right? Oh, wrong–The wonderful people at Big Pharma, MegaMed, and their lackeys at the FDA have decided that any type of CSF stem cell injections need another decade of “clinical trials” before it’s even legal here. Apparently I don’t own my own body, and I certainly don’t have the right to try to save my ass from a deadly disease here in the “land of the free” until American MegaMed corps can figure out how to patent a treatment and overcharge health insurance companies and Medicare $100,000 for it. And I’ll be dead by then along with at least 50,000 others…

That’s enough medical/political ranting for my gratitude blog, so I will say that I have explored a variety of naturopathic treatments to potentially ease my symptoms as well. I’ve tried a couple of nutritional supplement protocols (which made me feel worse!), some ozone therapy (which seemed to make me temporarily feel better, much like the steroid therapy at Mayo Clinic shown above), to some electrical zapping which didn’t seem to do anything at all. And I’m of course taking a few allopathic, Big Pharma things for muscle spasms and pain relief, but they are only temporarily useful in the case of a degenerative disease like ALS.

Just to be quite clear for those that haven’t seen me:

–I can only walk a few hundred steps a day around the house in my walker because the muscle spasms in my legs are so bad they won’t bend when I put any weight on them. 

–After about 30-40 tiny steps with the walker, I have to sit down for at least 15 minutes before getting up again. If I sit down for an hour or two and “rest,” it’s even harder to get up because the muscle spasms tighten my whole body to the point that it doesn’t want to move and creates additional pain. I’m damned if I move and damned if I don’t…

–I can’t get up from a seated position without using my arms as well, and I can’t maintain my balance standing without holding onto something sturdy with my hands.

–If I stand upright for more that 2-3 minutes, my back pain from the muscle spasms is unbearable and my legs are at risk of collapsing.  My legs are getting weaker and in a month or two I probably won’t be able to stand at all. 

–I can’t bathe except seated with the help of a caregiver. (Well, I probably could, but wiping out in the shower and then not being able to move would be a very bad idea!)

–I fortunately can use the bathroom myself for the moment, but that probably won’t be the case in a month or two. And the bathroom has to be cripple friendly or someone else will have to lift my half-naked ass off the toilet. My friends keep inviting me over, but if I can’t use the bathroom, I sure as hell can’t stay very long!

–I can’t really write more than one capital letter every 5-10 seconds or so because my hands are so weak and uncoordinated.

–It’s getting increasingly difficult to perform any fine motor skills with either hand. I’m talking about everyday stuff like opening a bottle, eating with a fork, opening an envelope, picking up an object without dropping it or knocking something else over. Both arms and both hands are getting weaker and less coordinated, and my ability to grip objects is going away.

–My typing is pretty slow and difficult and it won’t last much longer.  I used to be a whiz.  I’m trying to get as much out on my blog as quickly as I can before it’s too late.

–My speech is so slurry and labored that I sound like I’ve had a half a bottle of JD by 10am.

–It’s getting increasingly difficult to chew and swallow although I can still eat most food at the moment.

–I’m sleeping in one of those mechanical hospital beds now to relieve back pain and help raise me up and down so I can get in and out. My core isn’t working well enough that I can even roll onto my side without a huge effort and grabbing the side handles of the bed to help.

–It’s getting increasingly difficult to breathe, which is the scariest symptom of all to me.

–My level of fatigue is incredible.  I’ve probably got only about 10%-20% of the energy I had a year ago, and it’s getting worse.  In spite of constantly feeling exhausted, sleep is hard to come by because sitting or lying in one position too long aggravates the muscle spasms, causes pain, and wakes me up.

I’m not kidding when I say that 90% of my physical energy has gone in a year. I’m a data geek when it comes to health and fitness. I’ve gone from 6,000 limping steps a day to about 400 a day with a walker in a year.

At some point, ALS victims need to make tough decisions about how far they are willing to go to prolong their lives.  When you can no longer move, eat and breathe unassisted, you end up like the people in the photos below. Their ability to move is generally limited to maybe one arm, a few fingers and their eyes, and you can see that they have breathing and feeding tubes as well as computer technology which allows them to communicate one letter at a time through a computer screen that recognizes eye movements. (I don’t think a foodie, gabby bastard like me would be very happy with any of that technology!) How far anyone wants to take this is a very personal and difficult decision that is looming just ahead for me.  I think about it every day, particularly on days when it’s difficult to breathe. 

Steve Gleason played football for the New Orleans Saints before being diagnosed with ALS in his mid-30s. He is still alive at 42, well above the 2.6-year average survival rate, largely because he’s willing to use any technology available.

Having said all that bad news, I can still say that I haven’t entirely given up on the medical side of things even now.  I’ve recently gone to neurologist number 8 at least last week (at Barrow), and he’s agreed to run a few more tests on my spinal fluid and refer me to an infectious disease specialist to see if anything obscure was missed so far.  I also have a couple more referrals in the works—One to a local spinal neurosurgeon, and another to a diagnostic genius “Dr. House” kind of guy in Dallas who is going to give me his opinion based on my medical data I have sent him.  So I am fighting until the end in every possible way I can to make sure it is really ALS and not some other incredibly obscure disease. 

Waiting to see Neurologist #8 at Barrow Neurological Institute. They agreed to test for a few more things, so I have another spinal tap (no, not the band–Hahahaha!) coming up this week.

Maybe there is a lesson in gratitude here after all.  I have never had to fight this hard for anything in my life, and it’s oddly gratifying to know that I can fight pretty damned hard when I have to.  I was never even in a fistfight when I was a kid (I was always Mr. Chill Peacemaker even back then), and now this!  As I’ve been writing the blog about my very enjoyable life, I began realizing how easy things were for me, and I also began to think that readers who haven’t had it nearly as easy in life might thing I’m kind of a clueless, ungrateful asshole!  And I’m certainly not going to say that they are wrong.  For most of my life, things came so easily to me that I really wasn’t in tune with the suffering of others.  I had generally written most people’s problems off as things that were largely their own fault, and I didn’t really have the empathy I should have had on many occasions.  And I’ve been taught this lesson in life by all of you who have come out and offered me your amazing love and support!  When you think about it, I was given the gift of really never having to learn things the proverbial “hard way” for my entire life, and now that it’s my turn I realize I’ve been one of the luckiest bastards on the planet!

Since I’ve started going down, I’ve noticed that I’ve been paying a lot more attention to conversations I’ve had with my family and friends about the hardships other people are facing.  In just the past week I heard about a friend’s dad who was diagnosed with brain cancer and died five weeks later.  I heard another story about a 3-year-old girl who died of cancer.  I’ve met ALS victims who are in their 20s!  People die from or are disabled by heart attacks and strokes unexpectedly every single day.  So as shitty as ALS is, I can say that me sitting here (scared shitless and in pain to be sure) is still a hell of a lot better than a lot of people have it!  I had a long conversation with my friend Jean the other night about God torturing Job, and it’s really just one of life’s challenges that we all have to deal with suffering in some form try our best to be at peace with it.  I must admit I haven’t mastered the peace part yet, but I’m much worse physically but strangely figuring out the peace and acceptance as I fight my way through the rest of life.  And I thank you all for your kindness, help, and understanding.  It truly is more than this really lucky bastard deserves. 

From Fatness to Fitness

Genetically speaking, I was born to be a fairly lean guy at 5′ 11″ and a healthy weight of somewhere around 160#.  I was only about 145# when I graduated high school, but by my mid-20s I was about 160# and a normal healthy size.  Unfortunately, I had developed the typically American habit of eating whatever the hell I wanted, and I had also been raised to learn the “grew up in Wisconsin in the 1970s” habit of drinking as much beer as I wanted.  I had a fast metabolism and could have probably handled one or the other, but the combination of the two eventually got me.  Here are a few pics in my 20s—I was very slowly gaining weight, but I looked normal and was having a hell of a lot of fun!

At age 30 I was probably up to around 170#, and I surely couldn’t wear those Levi’s with the 29″ waist anymore!  I was starting to get the typical beginner’s beer gut and small “love handles” and I was gradually buying slightly larger clothes.   At that point in life I was mostly writing for a living and I had just gotten started in the advertising production business.  Sandy & I met on a shoot and got together when I was 31, and having an awesome cook at home didn’t hurt my porky transformation either—Hahahaha!  Here is a pic from this era, and you can see that I was starting to put on a few. 

Age 30 and about 170#, so it took me 10 years to gain my first 20#.

I quit smoking cigs around age 33, and although that was a good thing I was ramping up my beer consumption and began a 15-year era of “work hard, play hard” in the extreme.  I was literally doing one or the other or both every waking moment, and although I was psychologically wired to be perfectly happy doing that, my body was suffering physically.  By my early 40s, I weighed close to 200# and I can safely say from what I learned later as a fitness freak that it caused my health to suffer substantially.  My main problems were serious issues with high blood pressure caused by being fat and gout caused by drinking waaaaay too much alcohol.  I used to wake up most days with painful creaky joints from head to toe and a hangover to one degree or another.  Of course, all this could be “cured” by a few cups of coffee and another 15-hour day of work!  I still remember my doctor telling me that the blood pressure meds were no longer working and that she would have to keep increasing the dosage, OR I could just STOP EATING AND DRINKING SO MUCH. 

Of course, I ignored her advice until I learned something very important and had a painful epiphany on my 48th birthday in 2010.  The epiphany was both instant and powerful, and I knew my life would be forever changed.  It was very tough at the time, but it’s one of the things I’m most grateful for to this day.  Hell—I could have already been dead from a heart attack a few years ago rather than battling ALS today.  (Again—the irony of life rears its ugly head—Hahahaha!!!) 

Me, my Mom and Sandy at my Mom’s 80th birthday party a few months before my 48th birthday epiphany. I was about 195# or so then…

I decided right then and there that I was going to take a more well-balanced approach to life and get with my physical side which until then had been completely ignored at the expense of the cerebral/business and hedonistic “work hard, play hard” mantra I had chosen to live by until then.  To me, “work hard, play hard” seemed quite balanced, but as we get older we have to invest some time and effort in the maintenance of one’s physical health.  I was trying to keep driving my 120,000-mile body at top speed without ever once stopping for an “oil change.”  What an idiot I was! 

Within a day or two of my 48th birthday, I had gone on the Atkins diet and limited my alcohol consumption to 3 Michelob Ultras a day.  That might not sound like much of a sacrifice to you, but for a boozing Cheesehead like me, it was like a religious conversion!  I allowed myself the 10g of carbs from the Ultra, and the rest came from vegetables only.  No bread, rice, pasta, fruit, soda or anything else with a carbohydrate in it.  And I stuck to this for at least a year.

About a week later, I joined the gym and was getting up at 5am every day to go swimming.  I chose swimming because my gout was so bad I couldn’t possibly walk or run any significant distance.  And get this—I was in such pathetic shape that I couldn’t really even swim laps in a traditional sense.  The only stroke I had enough endurance to do was one LENGTH of a face-above-the-water, old lady breast stroke and a walk back to the beginning end of the pool and repeat.  Seriously?!!  I was in pretty bad shape.

But what did surprise me was the relative speed with which my old body adapted and rose to the occasion in terms of both diet and exercise.  In a few months or so I had lost about 20 pounds and could swim the real breast stroke continuously, albeit pretty slowly.  My gout disappeared relatively quickly so I started walking/jogging and lifting a few weights at home.  I had a stationary bike too and added that to the list.  I wouldn’t have believed it myself, but within 6-8 months, this old fart could jog 5 miles, swim for 30 minutes nonstop, and lift a few weights!  And I got off the blood pressure meds because my BP had dropped back down to about 120/75 and my resting heart rate went from about 80 to 65.  Who knew this diet and exercise shit really worked?!!!!

The one mistake I did make though was in doing the same 12 or so weightlifting exercises 2-3 times a week.  The problem was that they were all upper body and all pushing exercises (no pulling), and they threw my shoulder joints out of whack to the point that I couldn’t even lift my right arm from the pain!  Ever the voice of reason, Sandy encouraged me to ask our neighbors for a referral to their personal trainer, and my days as a gym rat officially began!  I’ll say this right now and reiterate it later: NO STEROIDS, drugs or anything other than a healthy diet and exercise were involved in my physical transformation. I’ve been asked/accused, had erroneous assumptions made, and no freaking way did I “cheat.” I was 100% “natty” (fitness-speak for “natural”) all the way.

I told Rachel the trainer what I was doing; she laughed, showed me the right way to train, trained me herself 2-3 times a week in the gym and gave me an exercise plan for home.  I trained with Rachel for a couple of years and got really good results for a 50-year-old dude who started out as a fat slob! Here are a few pics after about 6 months on my own losing weight and 6 months in the gym with Rachel. I stayed around 170# and about 15%-18% body fat or so but was continuously losing fat and building muscle.

Rachel eventually got a real job as a physical therapist for the benefits, and I moved on to Julian and Dave, two of the trainers who owned “The Yard,” the gym where I was training with Rachel.  I was in pretty good shape already, but those guys had been chomping at the bit for a couple of years to get their hands on me and train me like one dude trains another.  In their minds, Rachel was good for the beginner that I was but now I was ready for the real deal!!

Julian was a younger guy about 30 who regularly entered bodybuilding shows and had even won a couple.  Dave was a retired wrestling coach about my age, and I nicknamed him “Dr. Triceps” because he was a master of that particular muscle as you can clearly see from his photo!  They both took me to school on the finer points of weightlifting, and I achieved both strength and a look I never thought possible in my 50s. Julian took more of an overall body approach using a lot of traditional strength training exercises like the bench press, lunges, shoulder presses, lat pulldowns, etc.

Dave on the other hand was more of an isolation guru and would invent his own exercises to specifically target certain muscles in certain ways. His particular specialty was the triceps muscle because according to his logic, it was the largest muscle in the arm and needed to be properly targeted for maximum upper arm size. I certainly think photos of both he and I prove that his theory was sound! Here are a few pics of me around age 52-54 after a couple of years with Julian and Dave. At this point I was about 160# and 10%-12% body fat and at my physical peak before my disease started a short time later.

“Dr. Triceps” definitely knew something about his craft!
Veee vill “Pump you Up!”
This was a favorite that Julian had me do. He liked to take the vids and post them on his social media. Hey–I’m always happy to help a friend’s legit marketing effort. You and Dave are the real deal, Julian!!!

If it seems like I’m bragging in words and pics, I definitely am, and there are two reasons for this.  (And, hey–I posted my fat, ugly pics at the beginning, so fair is fair–Hahahaha!) First and foremost, I want to impress upon everyone reading this that they too can achieve things they never thought possible and at any age.  I had no idea I could achieve what I did, and I don’t want anyone else to underestimate their potential. Too many people invent bogus excuses in their minds about why they can’t do something (particularly diet and exercise related!), and I’ve heard them all since I became fit.  I’ve had literally hundreds of people essentially ask me some version of of question about what my “magic” diet or “special” exercise regimen is (and I’ll repeat myself again for those who think I must have “cheated” in some way–It never involved steroids or anything other than a few completely legal nutritional supplements available anywhere!), and when I tell them my story, I always hear some version of an excuse about why they can’t do why they couldn’t possibly do what I did for 100 bogus “reasons.” I’m telling you in all honesty that I never even intended to take things this far or would have believed it were possible.  My original intention was simply to lose 25 pounds and tone up a bit, but my endorphins kicked in and got the best of me–Hahahaha!

Most people who asked me about fitness were really only looking to lose weight (or more accurately body fat), and I told them I had very good news for them. Weight loss is typically 80% diet and 20% exercise, so if they hit me with excuses about their “bad knees” or “busy schedule” preventing them from spending a few hours a week exercising, my answer was “No problem at all. Just stop stuffing your face with too much of the wrong food, and you will lose a pound a week.” I often showed them the meme below when the excuses for being overweight led in the direction of “secret, magic, trendy diets.” There is way too much of that bullshit going on these days. I simply told them to pick the one which most agreed with their taste buds and to stick to it. This pretty much says it all…

Of course, when I told the curious that they had to get an app and track their food and calorie intake, all of a sudden they became “too busy.” Sigh…

The second reason I’m bragging about my physical success is that I believe people should be proud of their achievements in any area and advertise the fact (within reason, of course!)  Someone has to lead the way and set the right example, and although it wasn’t my initial intention to lead anyone in this area, it’s become my role to help people whether I like it or not (and yes, I liked it—Hahaha!)  And I work in advertising, so I know damned well that people don’t buy the “product” unless you make it look its best and sell the shit out of it by any means necessary!  Be proud, act proud, talk your shit up, and encourage others to do the same. 

Here area a few more pics, and I had also taken up trail running at this point. Sherry had gotten me into hiking with her, and I soon discovered how much I loved the trails. While she was at work, I would run the trails alone, and I was one of those crazy guys who did 5-6 mile runs in South Mountain Park in July when it was 112 degrees outside. I would laugh at the signs saying it was too dangerous and loved having the trail all to myself (except for the snakes, Jean–Hahahaha!) As I think back on it, I’m damned lucky I never wiped out and knocked myself unconscious on the middle of the trail somewhere. I would have likely died from the heat because nobody would have found me for a day or so.   Irony is everywhere…

It became my intention a few years ago to become a personal trainer and probably open a small gym as my “semi-retirement” career. I had thought advertising would eventually slow down for me, but it never did, and then I became too ill with ALS to work at all. As part of my preparation for my next fun career, I wrote a couple of simple nutrition primers which I planned to give to my future fitness clients. That never happened, but they really are about 90% complete, so I’m going to attach them here in case anyone wants to check them out and benefit from some simplified but effective guidelines for weight loss. I know most people won’t overcome the weight-loss inertia if they have to buy and read an entire book on the latest trendy diet, so I did my best to condense what worked for me into just 7 pages total. My approach is low-carb, low-fat, but others will work too. But mine is only 7 pages, it works, and it’s free!

Honestly, I was so far ahead of the fitness game for someone my age that I’m guessing it helped me stay a step or two ahead of my disease as I went down fighting.  I’m proud of the fact that I exercised as long as I could to the point of doing it in a wheelchair until the resulting physical fatigue was so great that I couldn’t do anything else.  And I’m still really bummed about that, but part of my “55 rock star years” were my 8 years of physicality and fitness.  It is something I’m still very grateful for and remember with joy in my heart…