S1:E19 - Words & Music

One Flew Over The Cuckoo's Nest - best film ever

If anyone can guess the movie I lifted the today's blog title from, I will be very impressed. I'll give a hint; amongst the notable cast are Tom Berenger, Michael Paré, and Joe Pantaliano. Answer will be at the bottom of blog. What is your all time favorite movie and why? Mine hasn't changed since 1976. At first, it was The Sting. Newman and Redford are two of the greatest costars ever and badass cool. But once I saw One Flew Over The Cuckoo's Nest, nothing could top it. It had all the finest ingredients; writing, directing and a dream cast with incredible acting chops. Man versus man and man versus establishment. A perfect film and it takes place all in one location, except for the boat trip. It was only the second film to win the top five Oscars; picture, director, screenplay, actor and actress. The first was It Happened One Night in 1934 with Clark Gable & Claudette Colbert. One last trivia note; Burt Reynolds really wanted the role of RP McMurphy but in the end lost out to Jack. Moving on to more important topics, today's playlist is everything classic rock from The Doors to Lou Reed to Cream and Jefferson Airplane and beyond. Words & Music keep my world bearable, even joyous, these days.

I still cannot believe I have ALS. What the fuck!!! Not a day goes by where, for a brief moment of time, I believe I have a condition that one day will get better once it runs it's course. Wait for it...the other shoe just dropped. The other 23 hours & 59 minutes of the day I am painfully aware that ALS is with me for the rest of my relatively short ass life. I am very sure that is the main reason I am out of bed and in my wheelchair every single fucking night somewhere between 2:30am and 4am, like clockwork. I would happily chop off a finger to stay in bed and sleep until 8am, but I get to choose the finger. I pray and meditate every morning. Starting tonight I will meditate before bed as well, it can't hurt me none. This is where the story and the plot takes a bizarre and kooky turn. Read on y'all.

It all started July 1st when I had to accept Medicare and DGA insurance became secondary. A very very attractive Medicare supervisor came to asses my condition and parked her very expensive Mercedes Convertible two houses up from us. Less than five minutes later my caregiver Maira showed up. As the rep began her questions, Maira interrupted her and asked where she parked and the type of car she drove. Mari and I assumed Maira hit her car. Maira informed all of us that a tree fell on her car. The entire front end, including windshield, was absolutely crushed. She came back in, finished her assessment of me, jumped in an Uber and drove away. Shit Happens as the bumper sticker says. Post evaluation, she saw fit to have a home health nurse come once a week to check my vitals and lungs. She is Russian and we like her very much. The other function she is qualified to perform a vacuuming of mucus and phlegm from my throat. Here is the process and not all can handle it. she sticks a tube up my nose, which acts like a shop vac, goes over nose cartilage then starts it's downward journey down my throat, past my mouth and into the Mitch McConnell section of my throat where the glue like mucus gets sucked out. Then we rinse, wash and repeat down the other nostril. Once the slight trauma dissipates, the sense of satisfaction is equivalent to the picture just below.

Utter & complete satisfaction

On to the Ukrainians. The Mercedes driving Medicare rep also approved a home health aide to come in twice a week to give me a shower/bath. It gives Mari a break from doing it all. I have shed all of my shyness and ego and my naked body is on display in all its glory for anyone helping me. If you're willing to wash my face, armpits, bait and tackle, taint and bum (in that order), then we might as well be in a nudest colony. At first they sent Luda, a very nice Ukrainian woman, but she only washed the parts easily reached and between my lack of speaking ability and Luda's lack of command of English, the total sum of communication was these two words "water good?". Two weeks ago we had to let Luda go and try someone new. They sent us another lady, also Ukrainian, and we believe her name is also Luda. I now have empirical evidence to the question plaguing mankind for centuries and the answer is Not All Luda's Are Created Equal. I love Luda 2.0, she sings and hums while bathing, jokes if I want shampoo & conditioner and is thorough. And she is calm and doesn't shout out Mary, Marty, and other names to call for Mari to come in every five minutes. Not done yet, one more newcomer to our fold, Hellen, a single mother of five and a grandmother who stems from Guatemala. Backing up for a minute, our dear friend Karen was in town and staying with us. We converted our dining room into a very hip 4th bedroom for her temporarily, or so I thought. You see Hellen comes in two nights a week from 9pm to 7am. It gives Mari a reprieve and allows her to get into REM sleep mode and doesn't have to sleep with one eye and ear open. Hellen does the night shift for a woman five nights a week and now for us the other two nights. I really do not like having a person sleeping in my room in a separate bed but it is what it is. The first three nights went fairly well, but the 4th night not so good. I had to go 10-100 about 2am and called fo Helleen, who is five feet from me in a normal volume voice for five minutes. For the next 10 minutes I called her name at a ever increasing volume until I was yelling at the top off my lungs. Everyone in the house heard me but not Hellen. Finally I called for Mari who came in from her comfy dining bedroom, helped me out of bed and I relieved myself finally. Hellen never woke up until Mari turned my wheelchair on. The chair makes a faint beep and that woke her up. She is a hard working woman so I didn't get angry, instead we calmly talked to her in the morning. That is her one mulligan. And the beat goes on, somewhat comical and not the end of the world.

weSPARK Run - January 26, 2020 - 3 weeks after ALS Diagnosis 

So, who inspired me last week to be real, be myself and reminded me to be proud of who I am today and always? Karin did, and she is a dear friend to Mari and I and our friendship goes back to 2004 when we dated for a bit. I am witness to seeing her go through hardships and heartache with tears, grit and grace, come out the other side and be stronger, more compassionate and reinvent herself and always with gratitude and humility. Thank you for being here for us. In fact, we are so very grateful to have an army of friends and family surrounding us with love and helping hands. And that my friends is what makes each and every day  great or good. Mic drop and I am outta here.

Breaking news - The home health care nurse came on Saturday to check my vitals. Well, Sunday early evening we got word she has the Covid, so we get to isolate and get tested now. I think I will binge on Ray Donovan.

Answer to my trivia question - Eddie And The Cruisers

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

Peace out!!!

Anton