S1:E17 - Alone Together

Truck stop near Barstow

It's incredibly liberating and makes a dude feel like a dude, a guy feel like a guy and a man feel manly. I'm not talking about a badass car, playing football, pumping iron or out drinking your friends. I am referring to a much cooler club and so simple. I feel like a manly dude when I knock off 2 or 3 bowls of cereal or better yet, keep eating until the milk runs dry. Herculean, I think not, but worthy of a lesser fabled character. I love making harmless observations and quirky shit juxtaposed to when I used to do cocaine at work and I knew there was 736 ceramic tiles in the toilet next to the wall. I must have counted them 50 times and it hurts my soul and stomach to think about it, even though it was over 20 years ago. As long as I keep those gut wrenching memories in a jar close by, ALS or any other terminal disease, won't win the sober tug o war and I only need to win it one day at a time. Sometimes it may be a hour or minute at a time but my AA toolbox is full and my life runith over with incredible sober friends anytime I need to sound the alarm. There are so many still out there who still suffer with alcoholism and addiction. I pray for them all the time. I know I was fortunate and little did I know what I learned, and continue to learn,  in AA would be incredibly valuable in my current condition. Go figure, it's a wacky and fun and confusing and an unfair life, at least from where I sit. However my gratitude is without limits, it is infinite! Time is a wasting, so let us move on to the playlist coming through my headphones.Going back to high school days, my primary band today is CCR. Lookin' Out My Back Door is on par with any great Beatles lyrics. I will pepper some of The Outlaws but avoid Molly Hatchet and The Marshall Tucker Band for now and save Lynyrd Skynyrd for a future blog.

Heaven in NYC  

Let's do some straight talk about ALS today. I would like to start out with some comparative thoughts ruminating and the occupation of space in my head. I'm 57, have had symptoms since age 52 and not only have I sampled life, I hit the grand slam of life and devoured it like a pastrami sandwich from Katz's Deli in NYC. For perspective, I turn to those who died young and never had a chance to live a full life. I'm referring to the millions of the young men and woman that died in war, all the children that died in senseless mass school shootings, all the people who''s lives were taken young from cancer and other diseases and accidents, and all my fellow ALS sufferers who got this nasty disease in their 20's and 30's. The list of tragic premature deaths goes on ad infinitum. I can't even imagine to be a parent who's son or daughter was tragically taken because someone decided to open fire on their kids school that particular day. It was very important to me to illustrate these horrible conditions of suffering that are far greater than my tragic life today. It is my life, it has taken a hard left down a dark alley right to the intersection of sadness and suffering.

The joy of being a stepdad

I've never had an issue telling people who I felt were exploiting me or taking advantage of me; please do not confuse my kindness with passiveness, it will surely backfire on you! Not quite as impactful as Jules' bible passage but I made my point every time. Y'all know I am believer in the philosophy of what other people think of me is none of my business. I stay true to that however, as with everything else, I do not do it perfectly. The prime example is my speech, or lack of it. My facial muscles and tongue have atrophied to the point where every word I speak is severely compromised. Many people don't get that my mind and brain are as functional as ever and ergo, they talk at me like you would a 6 year old. Every so often I get a wasp sting from that dynamic interaction. Still working on it. Much like my alcoholism and subsequent sobriety, my ALS has afforded me to grow and mature exponentially. Not because I became more saintly on my own but exactly like my alcoholism, it begins and ends with my desperation. Think of Mayo (Richard Gere) in An Officer and a Gentleman when he said "I got no where else to go". That is me!

Let's talk about Mari for a few. She is severely sleep deprived and overworked during daytime hours. I go through cycles of restless nights and during those times, we're lucky if we get more than two hours of straight sleep and 5 total hours. Simply put, if I'm up so is she. It's any number of things, I have to go 10-100, or need help turning on my side, or my arm is hurting and she needs to adjust it for me. My awesome caregiver Maira is here 40 hours a week but that leaves a whopping 128 hours a week Mari is tending to me, the boys, dogs and a shitload more. I should note, Maira may only be here 40 hours a week but her love and dedication is felt long after she is gone. Not only does she do a great job of my care, she also does laundry, dirty dishes, she sweeps every day (Mookie is a world class shedder), to free up time for Mari and I to spend some time together. Thank you Maira. My wife needs a week or two away from me to get some sleep and bathe in the fountain of youth. It is cost prohibitive to have a paid caregiver here 24 hours a day for 10 days, so I may reach out to friends to each spend a night or two as my babysitter and Maira will do the day shifts. Still working on Plan B, but this is first choice as of today. And I promise no 10-200's or baths while y'all are on call, unless you're into that type of shit :).

My physical, emotional and mental update as of this writing. This past Wednesday I went for my 3 month check in at the ALS Clinic at Cedars. No major condition changes. The really good news is my lung capacity (inhale & exhale) is pretty much unchanged from 3 and 6 months ago. Once the lungs go south it's lights out and goodnight Tone. I'm still not in favor of getting a tracheostomy. As of late, my urgency to pee has been off the charts and that has led to many a mishap. I am not ashamed to say my adult depends have been a lifesaver, literally. If I refused to wear them Mari would have killed me by now. I've been down this road before and hopefully it is a temporary condition. Other than that, it would be nice to get some solid sleep for longer than 2 hour clips. Regardless of sleep, even single fucking task is accompanied by a tremendous amount of effort and that equates to exhaustion. A simple thing like reaching or grasping my phone comes with a price. It is frustrating and tiring, so to conserve energy and sanity, I now ask for help for those otherwise insignificant tasks. It takes a giant to remain sane and happy through ALS, and I learn from my fellow ALS sufferers how to do it. They are all my heroes, courageous, brave and an abundance of grit. I watched an ALS documentary the other night and the subject opted for assisted suicide and he displayed every one of the aforementioned qualities to make that decision. ALS is a soul robbing disease and no one should ever be in judgement, I completely agree with his decision to end his life on his terms. Some day that may be my path, who knows.

On any given day I experience happiness, profound sadness, disbelief, denial, laughter and most other emotions on and off the spectrum. Every day is a motherfucking Greek tragedy mixed with Groundhog Day repetiveness. The only way I get through the day with happiness, laughter and joy is to compartmentalize and discard the nasty parts. It works for me and that will suffice for today. I'll deal with tomorrow, tomorrow. On a positive note, our commitment to advocacy, as that of the entirety of ALS advocates, seems to be garnering some movement. In the past week the FDA has granted "orphan status" to two different experimental drug therapies. That is unheard of in FDA land. Who knows when they will be available, but it is a start. Now is the time to double down and really apply the pressure. Orphan drugs get out much quicker than the average approval status quo. 

My time here on planet earth comes in second to none, more glorious than the most beautiful sunset and more spectacular than the most coveted material possession. And I'm just warming up, I have plenty more to do, see, witness and experience. So far, I've traveled the world several times over, fell in love, had a career I loved, got to be a stepdad to two awesome boys, worked with the most amazing people and have hundreds of friends who love me and rooting for me and I love them right back. Lou Gehrig had it right back in 1939, "today, Anton considers himself the luckiest man on the the face of the earth. I might have been given a badd break, but I have an awful lot to live for". There is no need for me to ever repeat my version of that quote, so lop it up good people. That seems like a great ending for this week. Always leave them wanting more. Hope you enjoyed the silly pictures.

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

Peace out!!!

Anton