S1:E8 - Screw It

(L to R) Gavin, Tom, Roman & Anton - 2016

Let's start off talking about a guy named Tom. A really good guy and one of my closest friends. He has done anything I have asked of him and even things I haven't asked. He'll cook for us, wash the dishes, picks up cards and gifts for me to give to Mari, and so much more. We spend most of the yearly holidays with Tom. When his folks come to town for the winter months, his mom cooks for me and makes all my favorite meals from my NY childhood. He, as well as his parents, made very generous donations towards caregiving. In January 2020, Mari was overseas and I was pretty okay staying on my own at that point, or so we thought. One night at  2am I got out of bed, headed to the bathroom, and I fell pretty hard. After spending all of my energy trying to get up on my own, I eventually peed all over myself and the hardwood floor between the bedroom and bathroom. Defeated, depleted and embarrassed, I finally called Tom for help. He showed up in 10 minutes, washed me up, helped change my clothes and cleaned up the mess on the the floor and was off, just like Harvey Keitel as The Wolf in Pulp Fiction. You see, I only met Tom a bit more than 10 years ago. I wrote him a three line email and we steadfastly became friends over time. What makes this story mind-bending is that Tom is Mari's ex-husband. How bout a hand for both of them for always putting the boys first and nothing else matters. For the curious, my email to Tom simply stated he was their father and I would just be another loving, kind and responsible person in their lives and put their well being ahead of all else. Skit skat, how bout that for a great LA story?!?

The remaining portion of this week's story has to do with today, a few yesterdays and some tomorrows. By no means am I living in the past and future, but it all ties together. At least for today it does, so I feel no need to explain or rationalize any further or farther, not sure which is correct. I feel I no longer need to tell you where I am or what I am wearing. I will say that I bought a track pad and it has made being at the computer so much more productive and less stress and pain using a mouse. For my music selection today, I'm mixing it up. My primary choice is Stevie Wonder. However, I am throwing in some Simon & Garfunkel for a little folk to compliment the great Stevie.

May 13, 2021

Just now, slowly rising out of the ashes of late. It's been a shitty few weeks for me, I have vacillated between dark thoughts, defeat, triumphs, despair, anger at my bad break, strength, resilience, lethargy, what I could have done better, Mari's future without me, hope and overall polluted thinking. I've compressed years worth of thoughts and emotions into a few weeks window. I am only now being able to quiet my inner self long enough to identify a few causes and conditions that are my triggers, and there are several realizations that deserve space in my blog, even if it just makes me feel better, an inch at a time. I know I'm the "Good Days, Great Days" guy. I am still that guy and I also know that dealing head on and not burying my head in the sand is healthy for me. Only by acknowledging my feelings can I move forward and recover in a healthy and honest way. I learned that in AA, from my wife and a small handful of friends. My parents were wonderful people but this type of existence was above their pay grade. Their way of dealing with emotions and feelings was, and I quote "Go and watch TV and I'll make you something to eat". It's comical today and they knew what they knew and it's a common tale. So, this is a great jumping off point.

Julie, Nick & Anton - post Arizona Marathon, January 2010

COVID - what a fucked year. I lost a good friend early in the pandemic. I met Nick on the ship to Antarctica. We ran that marathon and South America in 2007. Then a bunch of us from that trip crashed at my cousin Donna's house in Arizona to run that marathon in 2010. The next year Mari and I ran the NYC Marathon together. I was on the Verrazano Bridge, a mile or so into the race, I heard my name and it was Nick taking a picture of me. 40,000 runners and I run into a friend. Go figure. So, the real culprit in my story is not Covid but the re-opening of LA recently. Remember I was diagnosed in January 2020 and we went into a year long + lockdown in March 2020. I was confined to my house, my blankie, as my symptoms progressed, only seeing a few friends that year. Reality was very warped for me, like I was living outside myself looking in. Recently, we have been to the beach, Joshua Tree and a restaurant for Mother's Day. I loved it all. I hated it all. I loved it all and hated it all. My life was all about walking and running on the beach, going out to dinner and hiking every state or federal park every chance I got. Happy tears and sad tears as I drive my wheelchair into our ADA converted minivan, get strapped in a row behind my wife and she has to do all the driving. I feel like I failed her as a husband on many fronts and it really really hurts down to my bones. 

São Jorge Castle - Lisboa, Portugal - 2013

If we are out in the world or at home most circumstances remain consistent for me and most tasks remain the same for Mari and others. When Mari wrote her incredibly poignant guest blog two weeks ago, it was so powerful and she wrote it for her, not an audience in mind. Her blog was well thought out and beautifully articulated. Me, on the other hand, I write the truth but from the hip. Meaning, I am more mal-focused and  I do write for me but am acutely aware there is an audience. Let's talk some truth and give you a peek behind the curtain that is covered all over with humility, shame, acceptance, resistance, independence and surrender to what is and still have the grit to keep on trucking. First, let me tell you briefly about my condition today. My legs are relatively strong but I cannot walk. I can stand and stretch but I am confined to a wheelchair. My fingers, hands and wrists are weak but still work although a couple of fingers are forever bent. My arms, shoulders and upper back are so atrophied that my right side functioning is gone and my left side has very little life left in it. I think of my speech in terms of the poverty line. Sometimes I am a notch or two above and often my speech is below or way below the poverty line, neither of which is anything to write home about. Finally, my lungs and diaphragm are decent but my neck has been getting weaker the past two months. If you toss all that in a functional salad you wind up most everything has to be done for me, like you would do for a 9 month old baby. Mari, or my awesome caregivers, need to feed me, brush my teeth, wash my face, blow my nose, scratch an itch, dress me, get me in and out of bed, pull my shorts or pants downs so I can go 10-100 (Pee), hand me my phone or remote and you can add to this list ad infinitum. Every so often my bladder tricks me and you can imagine cleaning up that mess. Thank you Europe for inventing the bidet. When I have to go 10-200 (Poo), I clean my own bum with the bidet til it's so spotless you can eat off it. I do require help with pat drying of my cheeks. There are a few other medical equipment needs, like cough assist, where I need assistance. A day in the life of ALS and the devastating and cruel disease it is...It fucking breaks my heart for me, Mari, the boys and those that love me.

I touched on the past and present, now I'll take on what I feel the future holds, while I am still holding on for a miracle and I am wrong about everything future related. I attend many ALS groups and seminars on Zoom. I am exposed to all stages of ALS patients and they are all unique in many ways, except one. Symptoms sometimes start in the limbs, sometimes the bulbar, some progress slowly, some rapidly, some lose ability to speak and some don't and all progress differently. Most every ALS patient has their mind in tact to the very end with few exceptions, and all five senses except maybe the ability to talk. The one common trait we will all experience is paralyzation, cessation of the lungs and diaphragm and death, way before our expiration date. For the very first time since 2016, I am angry. I'm angry after 70+ years, science isn't close to a treatment or cure. I am angry that the worlds best minds don't work together and share information. I am angry that there isn't enough funding for research. I am really angry at the FDA for their "one size fits all" mentality and potential ALS treatments the same way they treat acne medications. I heard someone say "the FDA is protecting me to death" and that pisses me off. We are vigorously searching other parts of the globe for approved treatments that are legitimate and not hocus pocus. I am aware anger is not productive in and of itself but it is a motivator for sure.

Obidos, Portugal

Casa do Valle B&B, Sintra, Portugal

Douro River, Portugal

Porto Covo, Portugal

Visiting Vasco da Gama, Jeronimos Monastery, Lisbon, Portugal

I have always been a man of my word. If I made a promise you can count on it. My all time favorite explorer has always been Vasco da Gama. In 2012, Mari told me she always felt a real connection to Portugal, although she had never been there. So we went in 2013 and 2014, 2015 (w/boys), 2016 and 2017. Mari went again with the boys in 2018. On half of those trips we went house hunting. Our plan was once Roman graduated high school we would liquidate everything, sell our home in LA and move to Portugal. We love it there! People are wonderful, food is incredible, it is inexpensive, castles and wonderful history, food is incredible :), and home to the Knights Templar. We love buying bread with the expiration date the next day. It is like a mini California in topography and temperature and climate. Mari wanted to open a B&B, have chickens for fresh eggs and get magnificent water from boreholes on our multiple hectares. Back to LA, we had friends over between diagnosis and lockdown. I was asked if there was anything on my bucket list that I didn't get to. After a little thought, I felt my bucket list was completed and so much more, with one exception. I teared up at the reality of breaking my promise to Mari that we would move to Portugal, buy a B&B or restore an old ruin, and live out our lives there together. It haunts me every damn day.

My greatest day ever, even while getting lost in central Portugal (location unknown) 

That concludes the blog for this week. After 6.5 hours of writing over two days, I feel as though I purged and puked and I am starting to get my sea legs back under me. Also, about 20 minutes ago I switched music and I am listening to Blondie. Go figure.  

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

Peace out!!!

Anton