S1:E15 - Code Green

Gooood Morning America!!! Feeling great and ready to blog. First a heartfelt thank you to Nick Piper for guest writing week 12 blog. It touched my soul and I love you. I laughed hard all the time with you and learned lots from you. Lisa Poggi & Don Anderson, authors of week 14 blog; your friendship, love and "being there" for us is mind boggling. We would be floundering without you two. Thank you with all my heart. I have quite a bit to catch up on and process out loud for me and y'all. It's Monday, the 28th day of June in the year 2021. The playlist is two very different art forms, musically speaking but both are terrific. First up is the soundtrack to Alan Parker's brilliant 1991 film  "The Commitments". Also listening to American Utopia, David Byrnes incredible musical Broadway event  adapted for HBO by Spike Lee. I have seen it at least 6 times. Both are filled with soul and I highly recommend watching both.

Advocacy - Going way back to June 15th, what an outstanding day on Capitol Hill via Zoom. Mari and I were once again asked to advocate for all ALS peeps and families. We were joined by a few other terrific advocates and a rep from ALS Association CA chapters. Unlike our Capitol Hill asks in March, the focus this time was more directly for ALS families. In March we asked for increased research funding across many government departments. We reminded them about that but the focus was more legislative this time out. In brief, we asked for their support of bills that would alter FDA guidelines to allow access to therapies and drugs in an expedient way for ALS and other terminal diseases. We did this with compelling testimony from ALS victims and caregivers. We started the day with meetings with our two Senators, Dianne Feinstein and Alex Padilla. Batting lead off was Mari who was amazing. Then I was up. Due to my limited speech I wrote out what I had to say to make sure I used words I could enunciate with ease. We had a trio of great advocates batting in the 3, 4 and 5 positions in the line up. Collectively we were a force unmatched by any 5 humans and we did our best, which was pretty damn fine. The line up remained the same through the two senatorial meetings and the 4 house member meetings. It was a bittersweet day, and I'll briefly explain why. Despite us doing great and bills being drafted, we know the downsides of reality. First, Congress is incredibly slow with everything, especially items that don't appeal to a mass of constituents. Second, the FDA is like trying to get your 97 year old grandfather to change his ways, not gonna happen and if it does, he'll be kicking and screaming. The simple idea of convincing the FDA of treating ALS, a terminal disease, differently than an acne treatment, is a monumental ask. But, leaning to positivity is my default setting, I'll remain hopeful.

I don't believe I have been hospitalized since 1987 when I had a semi-collapsed lung from 14 icepick holes during a fight in an elevator heading down from the 34th floor to the lobby in a NY hotel. Everything since has been out patient, until this past Saturday, June 19th. Mind you I have not had a cold, cough or the flu since January 1998, so I felt my immune system was pretty rock solid. Even didn't catch anything from Mari or the boys and they all get sick twice a year. But, isn't there always a "but", I caught a cold about June 9th. Wasn't long until it turned in to a persistent cough I felt deep in my lungs. Long story shortened, I had pneumonia and antibiotics weren't working. I was on zero sleep due to coughing all day and night. So at 4pm on a Saturday, Mari drove me to a packed ER at Cedars Sinai. She strongly suggested we go as I was getting worse. As we checked in, the waiting room was 40 people deep either moaning or vomiting or bleeding. They took me immediately and had me on oxygen and in x-ray within minutes. Mari was perplexed that I bypassed the long wait. I told her they considered me a "code green", meaning they knew we had excellent insurance and the hospital will get paid. Don't really know if that is true but sounds feasible and makes the story a bit juicier. I remained in an ER bed until they had a room ready for my ass. Much to my chagrin, a room wasn't ready until 2am, 10 hours after showing up in the ER. Jokingly, that's when the fun began. In reality, I came to a showdown, me against the staff, night nurse Joey, and even Mari at first. It was so horrific and terrifying that I don't yet know how to process it. 

I don't know if my retelling will do it justice. First off, Mari and I are exhausted from the day and lack of sleep for the week prior. It's unfortunate, but if I'm up coughing so is Mari awake. A cold or pneumonia in a person sporting ALS is a hundred times worse than others, it is complicated to explain, so just take my word for it. Into room 4220 we go amid a sense of relief and closure for the long day. The nursing team slides me from gurney to the bed and it is the world's softest bed and the middle of the mattress I liken to a deep pocket hammock. As I sunk into the mattress, the immediate left and right sides rise up around me and I feel like I am being buried alive. My arms are literally paralyzed, so I cannot move and I am being smothered like I had a straight jacket on in quicksand. Mind you, Mari always has my back and all the nurses for 6 days deferred to her on most everything. For a few minutes that night she wasn't hearing me and she chalked it up to anxiety and exhaustion, which has happened to me in the past. As I moved my feet to the bed's edge, someone would push them back to center. Realizing I was all alone with paralysis I threatened to scream as loud as possible until my needs were met and they heard me. No one was responding so I pulled a Charlie Cheswick and screamed as loud as I could for what felt like an hour but probably closer to 15 minutes. Mari said let's move him to the padded reclining medical chair next to the bed and that is where I resided for six days and nights. 

The terror I felt that night haunts me and I need to take necessary steps to resolve what is in my court. Being paralyzed and not being able to move I cannot change. However, I am not powerless over my inability to communicate verbally. I have yet to embrace my Eyegaze speech device and I have to now. Not being able to tell people what I need is crucial and being in the hospital proved that. Probably more likely I need to get over it because Mari told me even she has difficulty understanding me. Bottom line, I need the willingness to change the things I can. The serenity prayer could not be more spot on once again. The truth behind the serenity prayer this time can literally be the difference between life and death for your humble narrator. Side note, we have issued an APB for nurse Joey, who hasn't been seen or heard from since that night. At 4:30am, the hospital insisted Mari take home my electric wheelchair for fear of it going missing. So, an exhausted Mari takes it down the long corridors banging into everything possible and out the wrong exit. At almost 5am she finds herself driving my wheelchair down Gracie Allen Avenue in search of our van. God bless her and would love to get that security footage. 

I cling to those light-hearted moments because the truth frightens me. I have never ever been so scared, felt so vulnerable and the realization that I was at the mercy of others every second of every day was so very stark that it penetrated deep in my being like I've never experienced prior. It still rattles me and I do not know if it will go away as I become even more dependent on others. I thank God every day for my wife, my friends who pinch hit and help me eat, pee and everything in between and for my caring caregiver. I am so very blessed to have a trusted team. I know of other pALS that don't have such trusted support. Back at the hospital I had a few awesome nurses and teams. Nurses Seth, Angelica and Linda took the time to understand the laborious process of my communication dysfunction and all went great on those shifts. The others ranged from "eh" to "blew". They would constantly interrupt me as I spoke, finish my sentences and got everything wrong and would quickly exit. Not happy, I would hit the call button and an arrogant nurses aide would enter, stand in doorway and say "I'll be back in five minutes" then he wouldn't come back. I had no problem ringing and ringing the call alarm and calling out as loud, yelling actually, for bloody murder. Their attentiveness, let's say evolved, and all was greatly improved. I have my part in this too. If I embraced my speech device it would have helped communication and saved me most of the anguish of suffering. My speech is exponentially worse at night when I am tired from the day. I can't even understand me.

Today is July 1st, half the year has elapsed. With that comes a shit ton of reflection; positive, negative, great, good, bad, pretty good, not half bad, lots of laughter, tears, smiles, friends, family, anger, heartache, prayer, reality, love, frustration, anxiety, meditation, highs, lows, failure, success, advocacy, service and a whole lot of acceptance. Tomorrow is a new day with a fresh outlook. Tomorrow is July 2nd. Tomorrow is special. Tomorrow is a milestone. Tomorrow should be celebrated. Tomorrow is bittersweet. Tomorrow I will be grateful, for tomorrow is July 2, 2021 and Mari's and my 10th wedding anniversary!!! It doesn't look like what I anticipated 10 years ago and with that comes a sense of guilt and disappointment that I let my beautiful wife down. We were supposed to move to Portugal in 2023 and instead she has to bathe me and feed me like you do an infant. It is a heartbreaker of the greatest magnitude. I thank the universe for my wife every single day, what a woman. Love you and Happy Anniversary Boo!!!

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

Peace out!!!

Anton