My “Martini Shot” with ALS

Please read this post first so you understand why I’m doing this. And please feel free to reach out to me either on the blog for some fun group chatting or at my personal email: erichofstetter62@gmail.com. FYI–If you view me on your computer instead of your phone, a menu of about 50 stories (and increasing!) will appear on the right. They are in no particular order, so please select whatever looks most interesting to you! And feel free to share with whoever you like. My life is a (mostly!) open book…

From “Heavy Lifting”
To “Crip Central” in about 18 months. Note the “Sanchez” hanging on the wall–Thanks, Peter!

Hello Friends (and even “Enemies”—Hahahaha!) 

Thank you so much for checking out my blog!!  Yeah, it’s kind of a weird idea I guess, but I think you all know that I’ve been a bit “outside the box” in life, and I’m sure as hell not going to change now!  I’ll get the bad shit out of the way first, and then we can have some fun reminiscing and ruminating on the meaning of life!   To be very clear up front—Other than this opening essay and one other post so far, my blog is not about the medical technicalities and torture of my illness (there are already a TON of books and blogs about the torture of ALS by other victims)—On the contrary, it is an expression of gratitude and a celebration of the awesome life I’ve been privileged to live before my health went south.

As a lot of you know, I’ve been diagnosed with some form of ALS, PLS, or cerebellar degeneration (depending on which doctor you ask), but the sad reality is that all these motor neuron diseases (MND) of the brain are debilitating, degenerative, and ultimately deadly.  ALS is the most common form (about 80% of cases, I think) and is the one you know as “Lou Gehrig’s Disease.”  I’ll let all you Dr. Google types check stuff out on the web if you want all the gory details, but I’ll give you a brief synopsis of where I am and how I got here over the past 18 months or so. 

The gist of it is that the motor neurons in the brain (the ones that control movement in the body) gradually die off, and it becomes increasingly difficult to walk, talk, write, get dressed, brush your teeth, eat, swallow, or move any part of your body in any way at all.  These symptoms affect each patient at different rates and in a different order, but it’s definitely a torturous way to go that I wouldn’t wish on my worst enemy (or even on Donald Trumpf or Hitlery Clinton—Hahahaha!).  The sensory and autonomic portions of the victim’s nervous system aren’t affected much and dementia usually isn’t involved, so you are fully aware and can see, hear and feel every bit of the physical degeneration as it happens day-by-day.  You slowly become a prisoner in your own body, and what eventually kills you is that your diaphragm muscles become detached from the motor nerves in the brain to the point that your lungs won’t expand enough to breathe, and you suffocate.  I just read another victim’s blog who described having ALS as the feeling of “being slowly buried alive,” and as time marches on I can appreciate this truth more and more. Damn—The Marquis de Sade couldn’t have dreamed up something worse than ALS!!

On a personal level, I’ve gone from a gym rat and 10K trail runner to a homebound cripple in about 18 months.  I first noticed I was losing my balance after having a few beers, but I was nowhere near inebriated enough for this to be happening (just ask anyone who really knows me!).  I honestly thought I’d been “roofied” at the concert I was attending that night (an awesome Rolling Stones cover band with my awesome friend April!).  A few weeks later I started having trouble maintaining a running gait while perfectly sober out on my favorite South Mountain trail.  I was having increasing low back pain at the same time near the L5 disc I herniated five years earlier, so I assumed it was a back problem and was pretty bummed out thinking I might need back surgery or something. (Ha—If only!)  I’d honestly be better off with Parkinson’s, MS, HIV, cancer or a toasted spine and at various points in my the testing process I was indeed hoping I would test positive for one of these things.  Can you imagine HOPING you had cancer or HIV?!!  Talk about the ultimate irony! 

After seeing a dozen doctors and spending $30K on tests, I got my official bad news of a motor neuron disease in January 2019.  By then, I could no longer play the guitar, was having considerable trouble writing, some trouble speaking, was walking with a cane, and starting to have a tight feeling in my chest more often.  Things have since degenerated to the point that I use a walker around the house and a wheelchair everywhere else.  My level of fatigue is extreme, but it’s important to me to focus what little energy I have left on the awesome life I’ve been lucky enough to have. Nobody is safe as long as I can still type in the age of the internet!

Life is short (apparently sometimes shorter than we expect!), and I want you guys to laugh at some of the funny pics and stories you may not have known about me; tell your own stories (email a Word doc and I’ll do the rest); correct, criticize and give me shit about my stories, and maybe even learn something about life or yourselves in the process.  (Okay—that’s a pretty lofty goal, but what the hell…I’m trying my best as either a very crippled dude or a dude from some other universe, depending on when you are reading this page—Hahahaha!!!  Or not—Maybe the Zen Buddhists are right and life simply begins and ends with nothing…  I’ll try to let you know what to expect if “The Force” allows it!  BOO!)

You all know me from a variety of places, activities, and the stuff of life, but I’d like to think I always enjoyed my family, my friends, and my life regardless of the reason we were hanging out.  As my friend Ernie once said: “If you can’t have fun doing this, you’re doing it wrong!”  He was referring to libertarian political activism (which I enjoyed immensely), but I realized that his philosophy applied toward pretty much everything in life.  I honestly feel that I’ve had what I’m calling “55 rock star years” on planet Earth, and I’m soooooooo lucky to have had that.   I’m crying as I write this, but many of the tears are tears of joy because I love life so much and am simply missing the awesome life I once had. 

At the same time, I’m experiencing new tears of joy as my illness made me realize how many real friends I truly have, and that I wasn’t even aware of how much love and respect my friends had for me.  I am truly grateful for all your love and support.  I’ve tried hard to earn some of it by living a good and honest life, but you guys are way more than I deserve.  Thank you, thank you, thank you from the bottom of my heart!  I love you too; I loved my life before, and I’m doing my best to love it now and take full advantage of the time I have left to be grateful for everything I had.

Eric (and many more nicknames to come…)

Ric/Rick/Ricky/Rico

Crickey

And I’ll think of a few more as the stories evolve…

P. S. I was never a big movie buff, but if I had to choose I’d say my favorite movie was “This is Spinal Tap,” because of my intense love of music, sarcasm, absurdity, and irony.  In a lot of ways, my life has been like that. And a hell of a lot of fun!!!

11 thoughts on “My “Martini Shot” with ALS”

  1. As stated privately, but now publicly I admire your courage and absolutely love the gratitude you continue to show for all the blessings, friends, and family you have known.

    We share very early and formative experiences which led us both down the journey of musicianship, and I thank you for the role you played on that journey.

    I pray you are the person who finds the cure, but either way, I wish you peace, rest, and comfort.

    Carry on

    1. Thanks, Rico!

      Yes, we certainly did start our musical paths together, and music is one of the things I am most grateful for in life. From that day we met in Gay Perry’s theology class, your other guitarists were done–Hahaha!
      I wish we had some pics of those days, but I’m sure glad we don’t have any recordings!
      14 was our magic number as I recall. We were 14 years old playing our first gig and we only knew 14 songs to play for 3 long hours!
      Long live “Watt 5!”

      Rick

    2. What memories this brings back!!! Dam, I sure remember those days! I am truly enjoying reading and listening to all of this! Cricks, you are a gifted writer, and my Favorite Rocj star! You live your life “outside the box” and I can say for the most part I also live my “life outside the box” or at least my brain!! Hahahaha!

      1. Thanks, Miss K!!! We certainly did have a lot of fun growing up in the ’70s, and I think I’m going to write some more about that. I have to be careful what I say though because times have certainly changed!

        Crickey

  2. Eric, You are such a brave wonderful soul. Thanks for always being such a great friend and so fun to work with, laugh with and brainstorm with. During my days at PetSmart, you helped me with so many projects, it’s hard to list them all. One of my favorite times was when you helped me set up “our prop room.” You gave me courage to ask for the much needed tools needed to be an Internal Producer. You did most of the heavy lifting (literally). When I lost my job, you were there for me to lend an ear and a shoulder to cry on. I can’t thank you enough for that. When I started back freelancing as a stylist, you got me jobs and continue to be supportive in your own way. Stay strong my friend.

    1. Hi Jaci–Thank you so much for your kind words! I remember a lot of the projects we shot, but I had forgotten about the prop room until now. It was like pulling teeth over there at corporate sometimes to get you what we needed to get things done. But that’s part of the challenge I always loved about my “work” and you and I pretty much laughed all the way through it. As I said in one of my pieces: “If you can’t have fun doing this, you’re doing it wrong,” and I know you’re enjoying life much more now that you’re out of the corporate rat race and out on your own. I knew you would be a success, and I wish you a long and happy life. You were always a sweetheart, and you deserve it!

      Eric

  3. Thanks E. It was so awesome catching up with you today. You’re still laughing and making me laugh. Remember, crying is ok too:) It’s cleansing. This is heavy shit that you’re dealing with! I enjoy reading your blog and hope it helps you through the day. Wish I had a “cure cottage” that I could take you to and make this all go away. Good night for now. Talk soon.❤️🌞

  4. Hi Eric,

    The ALS DX is pretty much what we all feared but kind of expected. The fact it took so long to make a Dx is pretty much inconsequential for your case. However not for others. It shows the medical profession is not as omnipotent as they would like us to believe. But they do manage to get your money in the process.

    You’re right to know you’ve had 55 “rockin years”. As you know I too have been dx with a potentially fatal disease. Honestly I’m not scared of whatever happens. Like you I have had 55 rockin years and have no regrets.

    I didn’t know you well but recognized immediately that you were somebody who knew how to live large and not stress the little things in life. It’s was my pleasure to meet you and get to know you a little. My thoughts and positive energy are with you now and into the universe.

    Peace Brother

    1. Hi Bobby–Thanks so much for reaching out and saying hi! Don’t even get me started on the medical profession, but I sure hope they can do something for you. I remember you being aware of your condition when I saw you, and Marie had told me about it before that.

      I’ll admit to being a little scared as the disability and pain continues to increase. I assume you’re experiencing something pretty systemic and similar from what I’ve read about light chain disease. That is the really shitty part to me.

      I need to keep reminding myself that I’ve had those “55 rock star years” and be happy with that. But dammit–I wanted more–Hahaha! As you say, we didn’t know each other well, but I think we were both hard-wired to live life to the fullest since the day we were born.

      Peace to you too, Brother.

      Eric

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