S1:E:3 - Fuel

Antarctica 2007 - The Vavilov Russian Research Vessel and "Wally"

Not talking about unleaded, diesel, hydrogen, coal, electric or even plutonium fuels. In fact, this weeks blog title has zero to do with any form of transportation or machinery. I am talking humanity and that which propels us beyond the self imposed limitations we place upon ourselves. Those necessities that takes us way beyond fear and turn dire circumstances into positivity, productivity and the desire to fly higher and enlighten us to a multitude of possibilities. After the first two installments of my blog, I felt a need to highlight those forces that have very little to do with any effort by me but affect me to my core. I am reaping the spoils of others, to be mentioned in a general and/or specific way throughout today's blog. I haven't a clue if it will be general, specific or hybrid of the two because I have not written those parts yet, and I prefer it when the rivers of writing chart their own courses without guardrails or interference. I'm pretty sure that was a run-on sentence, and Mrs. Tacktill my 2nd grade teacher, would have many red pen cross outs.

This blog entry should write itself; all I need do is edit the order and throw in a few fancy words for a touch of spice. This truly is an homage to my humans and their roles in me making daily decisions that is righteous thinking and a blueprint for living positively.  I kept all people at arms length for the first 30+ years of my life. If that remained a part of my makeup today, I would be in an assisted care facility in much worse shape. Or dead. I hope I don't forget to mention what caused the 180 shift for me. Picture painting time - sitting at my desk over looking our beautiful yard, running sleeves on for smoother keyboard execution, Bose headphones adorning my beautiful shaved (bald) head and today's music selection is Metallica. Just fuckin' with ya, I'm listening to everything Neil Young and some CSN&Y.  

Now, the meat & potatoes of this blog and the reason Mari and I are going strong and life is getting incrementally better on many levels despite my ALS and her being responsible for me and everything else that must get done. I have become the consigliere for The Family and advise and occasionally throw a monkey wrench to gum up the works. I'm very energized and incredibly excited to write the rest of this of this blog entry. For the sake of clarity, I'll give each of the three key drivers a paragraph onto their own.

University of Miami, Sigma Chi circa 1984

Let me start off with a group that has shaped my everything for the last 20+ years. That is AA. We are not supposed to divulge that we are in AA for fear if someone relapses it may give a person who really needs help, cause for discounting its benefits and design for living a sober life. I'm breaking my anonymity for a greater good I hope will help others. But, if I do have a future relapse, the reason starts and stops with me solely. Meaning, I neglected the suggested items that keep us sober and solid citizens. I owe so, so much to AA and my AA friends. Without it, I wouldn't have ALS because I would have been dead many, many years ago. AA not only arrested my disease One Day At A Time, but it shaped this then 37 year old with a good heart, into a pretty great dude. It also put to bed my self destructive behavior and turned my defects into assets, or shed them to a comfortable place, where they no longer influenced my day to day shenanigans. Here's a short list of the many traits AA has helped me with. I no longer feel lonely in a crowded room, I honor my commitments and show up for people (on time), pause when agitated, stay out of my own way and try not to make a mess. As I sit here writing, at war with ALS, the greatest gift AA has given me, is the ability to ask for help. That's something this stubborn guinea from New York wasn't taught and never learned on my own. Help came to us from my AA friends and acquaintances, like nobody's business. Before I could say "Help Needed", it came barreling like an out of control frieght train. Mari and I got bombarded with GFM donations, dinners delivered to our front door, socially distanced visits, text, emails, calls and participation in spreading ALS Awareness for us and in general and of course spearheading the incredible comedy show fundraiser. I love you all more than this paltry write up expresses. TY!

Ouch, 2019

I would be neglectful if I didn't mention or acknowledge the ALS Association and the Golden West Chapter which covers California and Hawaii. Since my diagnosis, they have been there for us every day, in every way imaginable. It feels to me they are nothing shy of family. As soon as I was diagnosed, Mari and I reached out to introduce ourselves. Before we knew it, my care manager Emma, and VP Audra, were sitting on our couch comforting us and teaching us what we didn't know, which was vast and without end. As we settled in to our circumstances, with tears now in the rear view mirror, we forged ahead putting one foot in front of another. We walked slowly, then sped up, then started running forward with an urgency to help our lives improve and advocate for current and future ALS sufferers & their families (please know I was speaking metaphorically, I can't actually walk or run, but I did increase the speed of my wheelchair :)). Emma and others, helped us find our two current caretakers, a wheelchair van, needed equipment and loaned us DME's (Durable Medical Equipment) free of charge. They have frequent webinars on all aspects of ALS and support groups for pALS & caregivers. They continue to educate me on what to do to improve my time here and more importantly, what not to do. The greatest, bestest, awesomenest thrill of all was Mari & I being asked to advocate and speak to our senators and congresspeople on Capitol Hill. It was just us and Fred, president of ALS Golden West, asking for millions of $$$'s in increased funding for ALS research and related asks. Mari and I had a good one two punch and we get to do it again in June. Thank you ALSGW Chapter for smoothing out this bumpy as fuck ride.

Santa Monica Beach - April, 2021

Let's close out with the real Fuel Tanker that tickled our souls, warmed our tummies, and made our lives such a happier laughed-filled and riotous way to live. If you haven't already guessed, I'm talking about all our friends and family. AA and Golden West are institutions that are giving and we need them so. Our friends and families helped turn bad days into good days and turn good days into great days! Literally, we cannot be stopped, we are a force to be reckoned with and please step aside if you're not on board the Mari/Anton Express. We are paying forward everything you people taught us about giving and getting involved with all our smarts, know-how and passion. When our dear friends Lisa and Don approached us about a GoFundMe campaign, we declined. Three production friends had the same idea a year earlier and we declined as well. Life changed when I saw my wife overwhelmed every day and getting very little sleep at night, not to mention our monetary resources disappear as fast as a mafia stool pigeon. So Don and Lisa didn't have to go it alone, I created three buckets of people to reach out to help with the ask and contribute their ideas and experience. Bucket 1 was my AA tribe. Bucket 2 was my film production family. Bucket 3 was certainly diverse. It contained childhood and high school friends, my fraternity brothers from college and a collection of friends I met along the way and some family peeps. Every single person showed up for us, our gratitude is immeasurable. Their love and support which manifested in so so many ways, has brought us to salty eye discharges more than once. I love you all and our hearts are overflowing. Normally the hand full of friends that have gone silent would cast a shadow on the hundreds that did, but not this time. I'm free and clear of all that nonsensical thinking.

Thanks to you people we now have two caregivers to help me and Mari has that magical glint back in her beautiful brown eyes. Priceless!!!

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

Peace out!!!

Anton