S:1E10 - "Dream'mare"

On the set of Sea-Doo - Cape Town, South Africa. Having fun with Photoshop and Jeremy Irons.

Definition of my invented word Dream'mare - noun - a present tense word of living a dream and a nightmare concurrently. Way different from rags to riches to rags again which is sequential. In early 2006, I was shooting a web film called Harbour Towne for Sea-Doo. We shot on the Sony backlot and Lake Puddingstone in San Dimas. Prior to that film for Sea-Doo, we shot one in Cape Town, South Africa. The agency begged me to please produce Harbour Towne and I finally agreed, most likely because they appealed to my ego. So, on a support boat in Lake Puddingstone was me, the client, 2 agency creative types and Karen, our scripty and an awesomely cool person. We got bored and played all types of games, and just like two dudes throwing a football an ever increasing distance, we continued to push further and further into more risqué games. Stuff like Dirty Sanchez and who had sex with someone your mom's age and you can imagine from there. Before we got that far, we each had to describe the others with one word only. Much to my surprise I was labeled zen. I never really thought about it before, but it was music to my ears that the view through the looking glass from others, I was thought of as zen. I have had my tantrums, which I call "Panini" moments, but they are less severe and less frequent. I worked very hard at changing certain behaviors. I have a special guest blogger on June 11th, and he has my blessing to write anything he wants and he can elaborate on the panini story if he so desires, as he was present.

Today's blog is about the extremes I am dealing with. At any given moment of time, any day or sometimes weekly, I experience both ends of the emotional spectrum between being a dreamer and living a horrific nightmare in real time and fully conscious. I tend to tred lightly when talking about my emotions because there are much greater atrocities than mine. I keep thinking about the six year old boy that was shot and died from an asshole with road rage in Los Angeles. I mean the way it happened is mind boggling. A bullet was fired through the trunk, came out the other side and through his carseat and into his back. A mere few inches either way and he would be alive. Prayers to his loved ones. In the end, all I have is my story, it's real and happening to me and I want to write about. It helps me see my life crispier and my hope I will give others freedom to experience their emotions and come out the other side feeling better. Today's play list is a trio of icons who keep my heart swaying and my feet feeling light and grounded. These greats that counter my anxiety are Ben E. King, Bill Withers and Marvin Gaye. PURE MAGIC!

The two pALS (people with ALS) who created The Ice Bucket Challenge have both since passed. We pALS and cALS (caregivers of ALS) are forever indebted to them for raising ungodly sums of money for research while bringing unprecedented awareness. It is pretty recognized that at any given time there are only 30,000 pALS in the United States, so ALS is considered an "orphan" disease and I'm fucking irate with that bullshit classification. Anyone want to know why I am disgusted with the "orphan" labeling? It's a rhetorical question, don't answer, I will. It is because every 90 minutes one of us dies from ALS and every 90 minutes someone new is diagnosed with ALS, so the total number stays pretty unchanged. Since Lou Gehrig was diagnosed, 85 years have elapsed and no significant progress on longevity have been made. The best FDA approved drug extends life a whopping 3 months. When I hear people say "3 months is 3 months" or "better than nothing", I want to kick them in the balls or twat. My point is, if all the researchers and scientists worked together, and had the common goal of life extending treatments, there would be hundreds of thousands of pALS alive at any given time and we wouldn't be orphaned. A cure is pure science fiction at present.

There is another reason I referenced The Ice Bucket Challenge, which I'll get to shortly. Side note - everything written to this point was Wednesday afternoon. It's now 8:15 Thursday morning and I'm back at it, already did a 30 minute guided meditation and I'm curious if the tonality takes a turn to a calmer Anton. A short note, with a small but loving crew, Mari and I have been filming a documentary short about a day in the life of us and our life with ALS. It was the brain child of some very dear directors and friends. While filming a few months back we had an idea. Dealing with ALS is an extremely personal experience that includes surrender, fight, gumption, acceptance, fortitude and a whole lot of intimacy on a grand scale and it a'int pretty at times. Our idea was smaller than Ice Bucket Challenge and we wanted to raise awareness of the intimacy involved in daily life for pALS and cALS, and this idea was just a miniscule example of it. Our next step was to test it with a small control group to gauge its chances of success and catching on. We asked 7 couples to take "The Toothbrush Challenge". Our ask was to brush your spouse's teeth and record an under 60 second video. Only one couple turned in their video. We may have to revisit it. I still think there is something worthwhile about "The Toothbrush Challenge" and I think we can safely rule out "The Wipe Your Spouse's Ass Challenge".

Most days I wake up happy and in a positive state of mind and spirit with my soul intact. Mari then swings my legs off the side of bed and with my core I get into a sitting position, and stand on a no skid mat. She pulls down my shorts and I pee into a plastic urinal. Mari changes my shirt, brings my wheelchair close and changes my shorts. Off to the bathroom so she can brush my teeth, wash my face and hands, blow my nose for me, meds, puts on my magic beads from my friend Jeff, and off I go to the living room or office. She gets me coffee with straw, puts phone and remote on my lap and then she goes back to bed because all this takes place usually around 5am. Mari shaves my head and face twice a week and we shower every other day. No longer safe for me getting in and out of shower, we now have a Bath Buddy. Mari strips me naked, I sit in a chair that's on tracks then Mari slides me over the side of bathtub and into the safety of the ceramic basin. All the while I'm sitting in chair, she soaps and washes me like a circus elephant. And she does the brush, wash and clothes change at night and helps me into bed. God bless her! Throughout the day we have our amazing caregiver. She tends to my needs and so much more. She is there when I have to pee, feeds me, stretches and exercises me, helps me get into my desk, puts sunscreen on me and the list grows every week. As I write, she is dying Mari's roots because she is also a cosmetologist. When I'm not in need, she does everything possible to make sure Mari and I have quality time together at night. She washes, dries, folds and puts away the clothes, she does the dishes and sweeps and vacuums all the hair from our three dogs and anything else we ask of her. Best Caregiver Ever!

Now that I armed you with some facts, backstory and life today, it is time to let you in on my Dream'mare. I still cant believe I have fucking ALS. Why me, I'm a pretty good and healthy guy? Despite the statistics, the odds of getting ALS is so very small per capita. I do my best to stay in today and live happily with purpose, and I have to say I do a pretty damn good job at it. My grunt and street mentality is a huge factor, and I never felt any sense of entitlement, I work for it. Looking at the stages of ALS chart above, I strive to stay in the "Acceptance" and "Finding Meaning" boxes. But I would be fibbing to myself if I didn't acknowledge my reverting and revisiting the other four stages, like going backwards to jail in Monopoly. Only difference is there are no "get out of jail free" cards, I have to work it hard, and I do. But how? I use several tools in my toolbox. I stay shallow in my thoughts at times and escape into something else that takes my mind far enough away for a reprieve. Instead of watching the news and getting infuriated with politicians, I choose to mediate or watch a movie. I write and blog. I bury myself in gratitude and count my blessings for being surrounded by people who love and care about me. When willing, I go deep deep deep inside myself and process my feelings and inner truth either in big pieces or in small bites. All of those tools enable me to live in today which in turn triggers good and/or great days. By my calculations, I'm 2 years 4 months into a disease with an average life expectancy of 2 to 5 years. To forewarn you, my thoughts, feelings and facts in this paragraph are tinker toys in comparison to the following paragraph.

AA taught me to live in today and I do for the most part. Being a producer, I have to focus on the immediate while preparing for and avoiding issues before they happen, while always keeping in mind the micro and macro details and juggling all the options and arriving at the smartest way to move forward. I fucking loved it and was amongst the best at it. Now to apply those skills to me and my family, throw in a terminal disease, and it makes for a foul tasting goulash. It is only a matter of time, and not much at that, where I won't be able to speak, my neck muscles will weaken to the point that I need my head strapped in place to my wheelchair, my arms and legs will be fully paralyzed and I won't be able to eat, so all my calories will be through my feeding tube. I will no longer be able to assist Mari or others in anything. I'll be totally dependent on our Hoyer Lift to move me from bed to chair along with my full time catheter. I am so very scared of that day. Frightened like never before. I have to process that every day. I hold onto a belief that that day will never come through some miracle. But if that day materializes, will I want to go on living? The good news is that I don't have to make that decision now. I suspect it will come down to what is best for my family and what do I have to give back through advocacy for the betterment of future pALS. Plus, I no longer know how to quit on myself or others. There is another piece to preparing for the inevitable. Mari and I prepared a family trust a few years back. Once diagnosed with ALS, we had to face the hard truth that every single person diagnosed with ALS have one thing in common. They all died without exception. So, we made amendments to the trust, updated my POLST, power of attorney, DNR, financial documents, etc. I was razor focused at the time and none of it bothered me as I remained detached from the task at hand. As we all should know, that's a temporary fix at best. That shit comes back to you like a sharp boomerang. Although a necessity for everyone, the reason for us makes me sad, not angry, just sad. Well, that's my story for today. Thank you for reading and supporting me, it is a huge mood enhancer.

BTW, when my time expires here, no one is allowed to hit on Mari for two years. I have spies ready to leap into action to chop your nuts off.

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

Peace out!!!

Anton

Gulf of Oman, UAE - 2007