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| An Adorable Anton |
S1:E20 entitled "It's All A Screwy Mess", is the season finale and it is as serious as a heart attack. Scratch that, it is more serious than a heart attack. It's about a man, we'll call him Anton, who has a terminal disease and in the last hundred years, his disease has a perfect 0.0% survival rate. I do believe that it nudges out a heart attack by a margin no thicker than a piece of dental floss, maybe by a slightly larger margin, like Ronzoni #9 linguini. I believe many of us subscribe to the rule that you cannot take yourself to seriously and it's healthier to have a sense of humor always, especially in hard times. More will be revealed and contemplated in the following paragraphs. I have been watching a shit ton of of documentaries and limited series' about music. Yesterday I watched the first two episodes of a limited series on the importance and impact of music from 1971. So, that is today's playlist and I'll pepper in 1970 and 1972 as well. Some people have asked if I only listen to classic rock, and I tell them I like newer music also, like The Police and U2. One time I saw Mandy Patinkin sing on David Letterman and the following year went to a Mandy Patinkin concert.....twice :). Please keep that last part between us. |
| Shower Time - hey, nice Stetson |
I suspect today's blog will not be very long, it doesn't need to be any longer than necessary. So, I participate in my local ALS Support Group on a regular basis. This past Thursday I attended the Palm Springs/Murietta support group because they had a guest speaker I wanted to hear and ask questions.The speaker was Lynne, a lovely spry 70 year old from an organization called "End of Life Choices CA". Lynne covered DNR's, POLST's, Palliative Care, Hospice, Voluntarily Stopping Eating and Drinking (VSED) and the California law on assisted suicide. I learned California is only 1 of 14 states that has such a law. The two stipulations in CA is you must be within 6 months of end of your life and you have to administer the potion yourself. Meaning, if using a feeding tube you have to push the plunger yourself, or if orally, you have to drink it yourself. I can get around those two stipulations pretty easily, especially the latter. There is not an "official" person present while plunging or drinking the meds. Only family and friends and it works pretty fang fast. I'm fairly certain there is a longish list of people in my past life that would jump at the chance to plunge me into the next dimension. I may have to buy one of those "take a number" machines you find at the deli counter or bakery. Better yet, we can have a raffle and Mari can pocket a wad of Folding Franklins. I'll have a think about it. |
| I call this "Accepting Today's Reality" |
I have achieved enough clarity in life and on this disease to keep all options on the table at present while I take it all in and process without passion or prejudice. I am making an exhaustive list of pros and cons to weigh if assisted suicide, or keep hands off and let my life run it's natural course, is the better course of action. It is too tiring for me to share the entire lists but I will share a few of those thoughts with all. Let us look at the pro's for assisted suicide of the ledger first, and I am being serious with my rationale. How often does a person get to throw and attend their own "Celebration of Life" party where I get to love and laugh with all the people I love on this planet. I get to choose when and where I pass and with whom I want to be with me. I can pass on my terms, even though I am not sure about my motivation behind that reason except I want to be a producer to the very end on my way to the exit. I want my last memories to be love, smiles and laughter. I guess I'll have to invite Sara and Marla to my bedside to supply the laughter, they are very very good at it. If I were a gambling man, I am, I would never take the action that they will find a cure in the next few years. Generations of ALS families have clung to that hope and to no avail. If the last two sentences are as true as I believe they are, then I must be unselfish and put my family and friends at the top of the reason list. Unlike some cancers where you may have a 50% chance of survival, my disease has data to back up the chance of survival is 0%. Knowing what the end is, why not free them up sooner than later to move on and begin a new chapter. I worked really hard fo 30 years building a financial safety net for my wife and stepsons and I do not want to pilfer what I worked so hard for. I have used enough of it already for medical and as a monthly nut supplement as disability and pension only cover so much. And for me, every single day is a struggle physically, mentally, emotionally and spiritually. Somehow, a day at a time, I am able to hurdle those four pillars of heartache. Thank you AA and therapy. To me, that is a solid list of rational reasons to move forward with assisted suicide when I am ready, especially freeing up family to mourn and move forward with their best possible lives. |
| "The Boy Next Door" - artist Alexis Lisanti |
Before I delve into the cons to counter the above pros, I need to share something I heard Thursday, post Lynne's webinar presentation. I went to the End of Life Choices CA website to noodle around and absorb more information. I clicked on the link for videos and they had short films, feature length films, Ted Talks, etc., that deal with the end of life and assisted suicide topics. In one film, the gentleman was moderating a group and he was missing an arm and a leg. On one end, he had grieved for his old life and physicality and way on the other end was the reality of his life today, sans an arm and a leg. He said everything between those two extremes was pure suffering and once he let go of "what was" and accepted "what is" his suffering went away. I've been analyzing that ever since to evaluate if I think it is profound or horse shit. I don't think cons is the proper descriptive term for the other side of the assisted suicide debate, so I will just call them reasons. First off, I'm a leader and a grunt; I'll lead you into production battle and stay and dig the foxhole for the camera to go in and I do not know how to quit. It's in my nature to solve issues and be the last man standing. Secondly, AA taught to suit up and show up and don't leave five minutes before the miracle. It could happen, I guess. Thirdly, I am still enjoying many parts of my life. Friday night we went to Don & Lisa's house for dinner. Don was on fire and we laughed our asses off. Again last night, Mari and I watched two episodes of Ted Lasso and howled with laughter. Lastly, AA also taught me to Trust God, Clean House and Help Others. I get such joy passing along inspiration and knowledge to my fellow ALSers and making a difference through advocacy. All that helps the tears and frustration of trying to hold a phone and taking 10 minutes to send a three word text. |
| Sneak Peak, shish |
Thank you all for your love and support through this screwy mess called living life on life's terms.The good news is I do not have to make any decisions today. Plus, on the down low, some talented professionals have been shooting a documentary short about my life before ALS and the majority is about mine and Mari's lives with ALS. More to come on that in the coming weeks and months.
...and remember - "make good days great days, no bad days allowed".
Peace out!!!
Anton
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