S2:E8 - American Bobble Head

Anton reincarnated from Vasco da Gama

Starting out listening to The British invasion, so many great bands and singers. It's incredibly satisfying to put it mildly. 

Happy New Years everyone. I for one don't mind leaving 2021 in the rear view mirror. It was a year of extremes; the great, the good, the bad and the ugly. I'm extremely blessed and grateful to celebrate Christmas and the New Year of 2022 in Portugal with all my family; which encompasses my cousins, wonderful friends from Los Angeles and locally here in Portugal. Hoping to welcome other great friends from Paris, Prague and London next week. I guess everyone knows something that I don't, like I am getting ready to pass on sooner than I anticipate. I kid them all, I know that the truth is this is the last time I probably be healthy enough to get on an airplane.

The Great Hits of 2021  

There are a lot in this category. Advocacy, advocacy and more advocacy. Mari and I were busy throughout the year helping ALS patients and caregivers through the tough times of early symptoms, diagnosis, procedures and caregiver resources and everything we learned from living it in real time. It gives me a sense of usefulness and pleasure knowing that my decrepit body still has some umph.

As many of you know, in the spring and then again in the summer, Mari and I were invited to speak to Senators and House members to lobby for the most important legislation in the history of ALS. In a nutshell, it provides a $100 million dollars a year to fund research and allows for accelerated access to promising treatments and drugs still in trial phase if they show promise. That's huge for the majority of ALS'ers like me, who don't qualify for trials. The "ACT for ALS" became law just before Christmas as Smokin' Joe Biden lent his signature. It passed the House subcommittee, the full committee and the Senate unanimously. It almost passed the House unanimously, but 3 Republican congressmen voted NO. Fuckers. On December 23rd, just moments after taking our seats, departing for Portugal, we received amazing news. The ACT for ALS changed from a bill to a law as POTUS signed it. We embarked on our adventure on a very satisfied note, accompanied by a few tears of joy.

Another great part of 2021 was the opportunity to tell my story through a documentary, conceived and executed by Ken Arlidge, Jane Keller and the fantastic team at Rocket Film. What started as a three minute fundraiser for caregiver help, became a 35 minute documentary that we all pray will help other ALS families not feel so alone. Equally important is serves as a visual device for educating others, including congressional members on the ravages of ALS.

All you need is love. And a small village of people. Mari and I have been witness to and on the receiving end of so much love, hugs and support from a small army of friends and family. It's been mind blowing. 

Rolling around Praca do Comerico, Lisbon, Portugal

The Good  - see greatest hits above. There is one exception. 

Our trip to Portugal was spectacular and sad for me. I did have the greatest Christmas of my life and it was the first time that Mari and I actually stayed awake until midnight with our tribe of warriors to say hello to 2022. On Christmas eve and then again on New Years eve, I shed a few tears, knowing this very well may be my last holiday season. People were coming and going throughout the trip and I really was emotional when Don and Lisa departed the day before us.  Don, as all know will do anything for a friend. But Lisa cracked my heart this time around. She just took over feeding me, getting me drinks and so much more. She knew that it gave Mari a break from doing those chores for me. Then there is our Portuguese family, who shopped for our Christmas eve arrival and the list is too long for the entirety of the of the love and care they showed us all. They happen to own the absolute best Bed & Breakfast in the magical town of Sintra. Many of our tribe stayed there with Virpi and Meeri at Casa do Valle. 

Virpi, Meeri and Cleo - our Portuguese family

Christmas with our friends and family

Lisa and Don

Sounds like a fantastic trip, and it was.  Even though I prepped myself that this trip to Portugal would be different than the previous six times, it still stung more than anticipated in the cavernous space between my ears. No hiking, no running, no castle wall walking and no exploring. I absolutely have to mention Tom, ex of Mari, father of Gavin and Roman and a dear dear friend of mine.  He carried the weight of two men and did so quietly and selflessly, and one of those men was me. I can't thank him enough and we have a damn fine modern family. Everyone else pitched in as well, true commune style. 

So much love at this table

Anton gets his percebes (barnacles)

A ginormous reason the trip is in the good and not great column is something we had planned to do.  All along, Mari and I had decided to stay in Portugal for a month or two, and possibly not come back at all and spend my remaining time there.  We decided at the 11th hour to return to LA. In simplest terms, in case of emergency or Covid Omnicron infection with either of the boys, Mari would not be able to jump on a plane and leave me behind.  She believes that I will not be approved to board a plane in the very near future.  I disagree of course, but that is my ego talking smack. I promised no resentment as I left the final decision to her, plus I was really missing my boy Mookie. And that's that. 

Nick Piper, my gumba

Gavin, Tom, Roman, Nick, me, Mari, Lisa, Virpi, Meeri and Jakob (and Cleo's leg)

I'll close out this heading on a high/low note. High, because Nick & Lisa, the Pipers, came to Portugal to see his producing partner and Panini travel gumba.  I will see you again, and my promise is my word, unless I get hit by a bus. Thank you for all the laughter overseas, around the US and in Los Angeles. It never felt like work, it was too much fun. 

The Bad - Only one item to mention here. 

Misha Louy, my brother in name and my confidant, passed on earlier this year and it was a tragic loss to his family and friends. I loved that individual trendsetter who created a path that was all him. Conformity was not in his vocabulary. He was a solid guy who came to visit often and with very thoughtful gifts on occasion. It's no surprise that he passed away from an enlarged heart, it was as big as the Grand Canyon. I miss my friend.

The Ugly of 2021 

Mostly it is about me and I will not spend all too much time on it. On January 6th, 2022 was the two year mark of my official ALS diagnose, even though I have had progressing symptoms as far back as 2015. In 2021, it got ugly. I lost use of my left arm, the right arm was already gone, my voice is shot, lungs have lost some capacity, I was forced to change the food I ingest and my beautiful muscular legs are no longer muscular.  I guess the upside is that all of my clothes now fit. 

Life on life's terms

The Closing of 2021

I'll close with this paragraph explaining why the title of this blog is named (American Bobble Head). Mari is an incredible driver, confident, instinctive and with precision.  But, she drives fast and aggressively, which normally would be fine by me. However, here in Los Angeles we have a wheelchair van and the wheelchair goes just behind the front seats. It's a challenging ride but doable. In Portugal we rented a wheelchair van and the only type in the country has the wheelchair destined for the very very very back of the van. If you run over a pebble you feel it in the back. The highways in Portugal are wonderful, that can't be said about the secondary or dirt roads. Lots of potholes, speed bumps, uneven pavement and sharp turns and some narrow ass roads. We would call them alleys here but they are two way roads to the Portuguese. My neck, weakened by ALS, combined with Mari's fast and aggressive driving, my head was bobbing all over the place. Potholes and speed bumps don't matter to her. Even on the highways, most entrance and exit ramps have a very tight radius.  Well, Mari takes them as fast as humanly possible. I truly believe that I was pulling 4g's on most of the ramps. Dang, it was painful and a really good workout of my neck muscles. 

Conclusion - I am one lucky hombre, blessed beyond belief.

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

Peace out!!!

Anton 

From our family to yours, have a GREAT 2022!