S2:E2 - To Live and Die in LA, or Not

Truth in Barstow, CA

The upsides to having ALS are few,  however I do enjoy them and make the most of it. Some of these are; being part of a tribe of ALS warriors, having the privilege of helping others navigate the journey, whisking through airports and other establishments, learning how much I am loved and how many people in my world have big hearts and are not afraid of expressing themselves. The downsides of having ALS; everything else! My mind is fully aware that my body is crumbling and turning into fossil dust. For 20+ years I would wake up and pray and promise myself that I would stay sober just for today. I have added a few more prayers and promises to that morning ritual. I pray for the willingness to be inspirational,  positive and a badass influence to my fellow ALS'ers, no matter what. The idea of being of service to my fellow sufferers makes that morning decision, a non decision.

Mari wore flips to mitigate height differential. That's amoré.

My wife is my hero. I have to say that out loud, she more than deserves that recognition every single day. She's not perfect but who among us is. She tends to her husband's needs, which are many, all the while knowing what is at the road's end. It's like skipping to the final pages of a book, knowing the ending, then reading the book. But she shows up for me day in and day out, while compartmentalizing her feelings to get through the day. The fun reaches new heights when I can't sleep and wake her every two hours. The following day is less than pleasant, especially when my sensitivity kicks into high gear. Thank goodness we have a full time caregiver to run interference on some of those days. If you do the math, there are 168 hours in a week, and my caregiver works 40 hours, that leaves 128 hours of Mari being on duty. We turned our dining room into another bedroom so when we have a nighttime caregiver, Mari can go to the dining bedroom for a decent night of sleep. Boo, I love you and I am a very lucky man. Mic drop! Moving on, one of my favorite times in life was my years at college at the University of Miami. So today's musical selection goes out to the Gamma Phi Chapter of the Sigma Chi Fraternity. Ladies and gentlemen, Mr. Jimmy Buffet and the Coral Reefer Band.

The left side (not shown) completes this oddly handsome man

Not sure if I'm having a mid life crisis, maybe a mid disease crisis, or maybe as simple as I'm not working for the first time in 35 years. It really doesn't matter, but I have decided to grow a big bushy gray beard and two days ago, I had my caregiver,  Maira, pierce both of my ears. Maybe not radical for some, but a big departure for your humble blog author. Yeah, yeah, yeah, I've considered a tattoo, but I'm literally skin and bones, I pretty much have lost all of my muscle mass. So it's either my back or stomach. I'll think about it. What else do I need, or want to share about the here and now. This past Wednesday I went to my ALS clinic at Cedars. I was in a foul mood and disengaged most of the time. Clinic is every 3 months and all the modalities come to the room where you are holed up for a good 5 or 6 hours. Mari packed a nice selection of grape leaves, chips and other tasty bits. First in was the nurse and he proceeded to administer a lung capacity test. My capacity went down for the first time in nine months,  which totally bummed me out. I am determined to get back to the previous number and have been diligent with my breathing exercises. Next in was the therapist (head shrink), and that is when I really went dark. It's so frustrating when you can't speak, so Mari was the only one that vented,  which really pissed me off. She was followed by the neurologist, respiratory therapist and finally the occupational therapist. It's a very good system to see all in one comprehensive day. Before we departed, I did request a different neurologist going forward, a specific neurologist who is more research oriented. To date I have replaced the pulmonologist and neurologist. At this point I am pretty sure there is red ink all over my chart, along with the words "Difficult" and "Pain in the Ass".

The days seem to fly by. I'm not going out as much as I would like. I spend most of my days on the computer doing research, attending webinars, ALS groups, AA zoom meetings, returning texts and emails or watching The Price Is Right. I really hate being on the computer for more than an hour, it's just not who I am. In my previous incarnation, I averaged 3 to 4 months a year in foreign countries, that's who Anton is. In my heart, that hasn't gone away, it's still very much ingrained in my DNA. On all those trips the first thing I would do is go for a run. It would immediately transform me into feeling like a local, especially the times when I would get lost and had to hack my way back to the hotel.

I have noticed that I am all over the place and sans any clever and  mischievous humor. I can only guess at the reasons why. It could be the chaotic chariot race in my head, or maybe I'm a little sad or depressed, or I'm writing this entire blog with my eyes for the first time ever. Regardless,  it is honest and a reflection how I am doing today.

Sigs Fun Club, circa 1984

                         

I have been reminiscing and thinking about the era's of my life that had a powerful influence on the person I am today. For the past few weeks, I have been looking at my time in college, the great times and the parts I wish I had a do over on. Remember, I was enrolled at the University of Miami from 1982 until 1987,  amid the explosion of cocaine,  and Miami was ground zero for importation. I held bricks with purple veins bigger than the average size human head. On occasion,  some of us participated more than any human should ever do. That nastiness aside,  the experience of being among so many fun,  funny, funniest characters in one place was a blast all the time. The memories are fresh, as if they happened yesterday and not 35 years ago. The drunken trips to Key West,  getting thrown out of certain townships, and the non stop laughter coming from a collection of rich & poor, hillbillies & city folk,  straight & gay,  black,  brown & pasty white guys from New Jersey. The best of times.

I want to share a little more about the ALS groups that I mentioned earlier,  it occupies a big part of my daily bandwidth,  sure is helpful that I  had fiber optic installed in my noggin. In any given group, there are the newly diagnosed,  or their spouses, and this is their first or second meeting, ones that have been there a few years that are more progressed in the disease, ones that are paralyzed but can still speak and swallow, ones that still have use of all their limbs but their voices and ability to swallow went away from the start. Then there are the ones that opted to get tracheostomies and many of them go on to live 10,  15,  20 years, or longer. My point is that everyone has a different path of progression and all have a different exit strategy, different strokes for different folks. No right answer exists except to thine own self be true. On the side of my fridge we have a whole packet ready to travel with me in an emergency or even on a casual outing. Among the items in the envelope are  my advanced directive,  my POLST,  my DNR,  and other annoying but necessary paperwork. I believe I mentioned it in an earlier blog that I don't see a tracheostomy in my  future. To be crystal clear,  I will not have a breathing tube inserted into my neck. A few reasons are all I need; you are primarily bed ridden,  you need 24 hour care which is comically expensive, and I wouldn't do that to my wife, kids, friends and loved ones. Mostly, it is just who I am and the way I lived my life, it's just a bridge to far for me. I humbly admire my fellow sufferers who have the cajones to bravely tackle life, get trached, and live life pedal to the meddle.

Great friends

Geez, I am starting to depress myself and I don't know why. I'm actually feeling pretty damn fine. I laugh daily, I meditate every morning for about an hour, I have friends who visit me all the time, I adore my amazing wife, I have my AA meetings with people I love that keep me grounded and remind me of what really matters in the world and yada,  yada,  yada. I would like to do a shout out to all the loving friendships I made through work and personal travel. To all the PM's and crews throughout the country, I cherish all of you, and you know who you are. I have been lucky enough to have friends all over the world, in NZ,  Thailand, Chile, Czech Republic, Spain,  UK, Hungary,  Mexico, Cambodia, Canada, Australia, South Africa and my second home, Portugal. I'm in awe of your love and support from a far. I am one fortunate cat. I'm going to wrap this blog up on a high note. There are two different events that are coming up relatively soon and I am flying high with anticipation and excitement. As Rachel  Maddow says "watch this space for more details and updates". So long until next week, stay safe and don't sweat the small stuff.

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

Peace out!!!

Anton 

Us in Portugal 2013