S2:E5 - Anton Doesn't Live Here Anymore

2013 Iberian Peninsula

I'm back after taking a week off. Mari and I were incredibly busy and working on minimal sleep and I just didn't have the time nor energy to write a meaningful blog. Sleep continues to be a battle for me, and by association, it carries over to Mari. A few items to update you on from my last blog entry. I'll begin with the light -hearted update first. It's pretty incredible the growing number of friends heading to Portugal with us. Two weeks ago the count was at 13, including us. We now have a full posse of 18 traveling. At any point, there are a minimum of 13 of us in country. That is music to my ears, eyes and heart. I'm hopeful that my dear friend from Paris can pop over for a few glorious days. Who knows, I may have to stay there, wouldn't that be nice.

The other great news is the congressional bill we have been advocating for, easily leaped another hurdle. On Wednesday the "ACT for ALS" bill received a full committee "YES" vote, it now goes to the House Floor for a vote. We do expect it to pass the House and then goes onto the Senate, which will not be a slam dunk by any means. We have 43 Senators cosponsoring the bill and until we have a majority, and we hear the words "the ayes have it", I am curbing my enthusiasm. A note, we are trying to get this bill passed before Congress breaks for recess in three weeks. 

Even with the two bits of happy news above and the third bit, which I'll talk about in the coming paragraphs, the fact is,  that I still have ALS. As a family, we suffer and endure this evil disease 24 hours a day, every day, week, month and year. There is no question that I am getting sicker, weaker, increasingly paralyzed, more shortness of breath and exhaustion. I am surprised that the ALS'ers don't die of heart attacks more frequently, it is such a stressful condition. Today I ordered a black, soft, neck brace to help keep my head upright on occasion, especially when I'm tired. I have to swallow my pride to make my life less stressful. I wake every day, pray and meditate, and promise myself that I can have a great day if I'm willing to do my part and commit to living the best life available. It is a given that I find I have to recommit that promise over and over again throughout the day. It's so frustrating and heartbreaking that I have to live with such a positive heart and mind, tightly bound to a rapidly failing nervous system. Those who know me best have been witness to my adversity to being defeated. My production and marathon families know that best of all. 

On to new business. The playlist for today is mostly Queen with a little Bowie and The Clash tossed in for some added spice. I love music and I love films. Films, loved them since childhood and never stopped. Pure escapism, entertainment, fountains of education, thought provokers, inciters, majestic and powerful. What guy didn't want to be James Bond, Matt Helm or Dirty Harry. Or didn't have a crush on Maureen O'Hara, Raquel Welch or Marilyn. That was the reason I moved to LA in 1988, to be in the movie  business. After I was a PA on a few films out of gate, I found the world of commercials, which was lucrative, relatively speaking. Truth is, I got my first commercial because I knew how to thread and operate a Moviola. 

Pre-war Moviola

Most things come full circle. We used to huddle around the 4" Moviola monitor. Today we find ourselves doing the same thing, only we call them smart phones. Yes, I have been around for a while. In college, I cut all my films on a Moviola or a Flatbed. Confession from this movie lover. I've never seen any of the Star Wars, The Matrix or Harry Potter Francises. I do want to see the Star Wars and Matrix films.

All the dialogue about films was an honest and convenient way for me to introduce my third bit of news with y'all. We have been working on a documentary about a day in the life of an ALS family (us); the struggles, laughter, tears, inspiration and fortitude. It is honest and raw, life with ALS is a daily battle against a relentless enemy who has a perfect record of wins, never lost a war to date. This documentary started as a 3 to 4 minute fundraiser for us to hire a caregiver, but man did that change. Ken the director, Jane the editor and Mari came to the conclusion that it was a bigger story. So we filmed, filmed, filmed and then filmed some more. And Jane edited, edited and edited some more. True Story, Ken was so committed to the project, was here so often, that his car is on Google maps and Zillow, right beside our cars. And Jane, who we never met prior, was incredibly passionate about our film, and became much more than a brilliant editor. She is essentially a co-creator who did it because her wonderful soul cared deeply. We love Jane. I would be neglectful if I didn't mention Rocket Film. Sara, Marla, Klaus and Ken gifted us this film and so much more. They are such amazing people, even Marla. We now have a gorgeous and poignant 35 minute film we can use to further the cause in our advocacy work to help current and future ALS families get access to treatments faster and get new laws that address the fragile time line of pALS, because every minute counts.

Behind the scenes of "The Last Marathon" Documentary

The project is now in the final polishing stage, the little bits and bobs that compliment Ken's gorgeous cinematography and beautify my mug, good luck with that. I'm excited to have an in person screening soon and hopefully have an invite only virtual screening for friends and supporters spread far and wide.

I usually write the blog over 2 or 3 days and sometimes there are changes and updates to my previous days  meanderings. Yesterday, a very hip Latvian canary unknowingly spilled the beans on a surprise about our trip to Portugal. My dear friend in Paris, let's call him Nick, is heading to Portugal, and he and Mari were going to surprise me. It cracks my heart wide open. That makes it an even 20 peeps. I'm not so sure we are done quite yet. The Latvian canary, we'll call him Kris, is hoping to catch a jet to join us on the Iberian Peninsula. BTW, Kris was the producer who gave me my first commercial because he was tired of being the only one on set that knew how to thread a Moviola. We have been friends for 33 years.
That about does it for this week's entry into the complex mind of a simple man. Have a great week everyone.

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

Peace out!!!

Anton