S1:Ep1 - Mortality

 

 

Mere mortal or immortal? Certainly not an everyday topic at the forefront of my mind. You hear of all the tragicness here at home and abroad. No longer a punchline about postal workers. Children murdered at schools, mass murders at concerts and clubs, car accident fatalities, childhood or young adult cancer, terminal diseases and war. That is a short list example of mortality. All you need do is ask any family member who has experienced any of the above and they'll tell you all about it. 

Now me. This is my first time blogging and my hope is to tell my truth without enhancement. I am not a writer,  so if I come off at times preachy or judgmental, cut me some slack please. As of late, some emotions surfaced and I  think by writing about it will ease the loneliness I feel, and make it all less scary. As I sit here typing, let me set the table briefly. My arms have very little life left in them so I am wearing nylon running arm warmers to assist in sliding my arms to type. I have Bose headphones on and listening to The Beatles Blue Album (1967-70), the good stuff. Every week I plan on writing about what's on my mind or gnawing in my gut. I guess my true intent is hoping everyone will get inspired to advocate for a passion of theirs and if you already do, then continue on and maybe give it a little extra oomph. My wife, Mari and I are waist deep in our ALS Advocacy involvement.

My name is Anton and I am a person living with ALS. If one believes in a Higher Power, it is not my right to ask why. But why, and I want an answer now, goddamnit? I may not ever know the reason why, so I'll leave it at "I was dealt a bad break" for reasons beyond my comprehension. I have speculated why, however that is interior conjecture so I'll Let It Be. I have been blessed with an exciting, beautiful and love filled life and I do not consider my story tragic at all, especially now.

For those who do not  know, here is a recap. In early 2016 as I nestled into bed, my right arm would tremor. It spread to my right leg causing drop foot and an occasional stumble and fall. In a three year span, I spent quite a bit of time in ER's getting stitches in my head, face, shoulder, nearly lost an ear. As my friends will attest, lots of black eyes, welts, and massive scrapes all over my bod. One time I even fell at UCLA Med Center,  so it was very convenient to get my left eye sewn up. Finally, on January 6, 2020, I was diagnosed with ALS. I finally surrendered, and for the past year I use a pretty badass wheelchair. Pretty hard pill to get down being an avid marathoner and climber of anything in front of me. Speaking of pills, not a fan. There are no drugs that really treat ALS to prolong life and a cure is science fiction as of today. One drug I take extends quality of life for 3 months and the other one helps reign in the emotional spectrum a little. I would cry watching a commercial and I even cried many times watching Armageddon. On the flip side, I would laugh uncontrollably like Joker. The latter drug works well for the crying part, almost too much, but it hasn't done anything for the laughing. So so grateful it is not the other way around, that would be pure misery. I think that makes a solid segue-way to when I finally realized I didn't have a shitload of time left.

The average life span from time of diagnosis is 2 to 5 years. Mari and I think the neurologist was asleep at the wheel and I should have been diagnosed a year earlier. So, we started the clock then. The only thing that can extend a life is a tracheostomy and I have already decided against it. I do not want to live that way and do not want my family and friends to trudge that road. I'm all for pALS that opt for one, but this is hard enough existence and it's not for me. I told Mari right after we got the ALS news that my goal was to watch my stepson, Roman, graduate from high school. I witnessed him from his first day in kindergarten and wanted to see head to tails of his school years. At the time, he was in 9th grade. That leads into my older stepson Gavin. He so reminds me of me during those formative years. He is now in his freshman year at Santa Monica CC. He is determined to get into UCLA as a junior and so far he is kicking ass and has incredible grades. A few weeks ago, Gavin told Mari he was planning on going to grad school and quite possibly law school. He plans on being the GM for the Denver Broncos. Or a sports agent. Mari filled me in on their talk. Like a Mike Tyson punch to the gut, it sank in that I won't be there to witness, and it broke my heart and I began crying. You see, to that point in time, my disease was relatively slow progressing and it allowed me time to process the decline one bite at a time. Sickness was a part of my everyday life, but death was a one off that on rare occasions crept into my psyche. I acknowledge I'm delving in the future and should stay in today. Not so easy sometimes as we all know.

I don't for one single second, ever feel sorry for myself. I'll go on living by a philosophy I adapted a long time ago...."Life is not a dress rehearsal. It is a one time live performance, so make it count".

...and remember - "make good days great days, no bad days allowed".

Peace out!!!

Anton