S:1E:2 - Threshold

Where do we draw the line? With your foot in the sand so we can erase it and draw a new one further down the beach?  Or do we spray paint it onto the pavement so it is more permanent? Are these the only choices? Yes, kinda. We all have our threshold of what is bearable and our definition of life, or more on point, living! It is as different for each of us, as light is to darkness. Okay, Anton you're starting to piss me off. What the fuck are you talking about? I ask you to please be patient. No one likes a whiner.

Hi everyone, welcome to my second installment of my blog, "When Will The Music Stop", an outlet for ALS Awareness and Advocacy and to help quiet the chariot race going on in my brain. I also hope it helps others, with or without ALS, to stop, think, inspire, and provide the willingness to change if any part of your life needs a new approach. I do not want to be judged, so there is zero judgement coming from me. "To each his own", as my grandma Marazzo used to say. Geez, I loved her and we laughed so hard together. What a woman! 

The "WE" will soon change to "I" as I get into my personal files on setbacks, triumphs, and what is my personal Threshold. So, sitting at my desk once again, wearing my running sleeves to assist my atrophied arms. Typing is pretty hard for me. I lied, it's very hard and my back, neck and shoulders ache afterwards. I have my Bose aviator headphones on and listening to Billy Joel - Live at Shea Stadium "The Concert". And yes, I make no apologies, I like his music (pre Christie). I'm a much bigger New York Mets fan and Shea is in my heart, part of my soul. That explains why one of my three dogs is named Mookie Wilson. 

Last part first: my current condition. My legs are strong but don't bend and my balance is for shit, so I'm confined to a wheelchair. I have next to zero muscles on my arms and shoulders. I have no ability to lift my arms. My speech, for the most part, is getting unintelligible. It depends on my sleep the night before, either way it will go totally silent for the rest of my, relatively speaking, short-ass life. No worries, I will switch on over to my Eyegaze device to write and talk. If they cannot synthesize my own voice, I already have an email out to Samuel L. Jackson to do some recordings for me. That would be amazing, although Mari may not like it when I say "Bitch, get off your lazy ass and get me some motherfucking water. And if I see a single ice cube in there, you better be packed cause your ass is out the motherfucking door". Hmm, perhaps I should reach out to Tom Hanks. 

At age 37 I got sober, I'm 57 now. I'm not going to get too deep into that chapter in this blog; it's a different beast and separate from the intent of the topic of Threshold. So, here goes. My presumed stance pre-ALS. Everyone has their thing that terrifies them;  be it drowning, falling off a building, the dark or some other personal horror. Mine happens to be being in a tight space with my arms bound. Picture Uma Thurman buried in a coffin in Kill Bill 2 and that sums up my greatest fear, nothing comes close. And now that my arms are mostly paralyzed, I have learned to be okay with it, most of the time. That's one for drawing the line in the sand column. How do I deal with someone feeding me meals, getting me dressed, brushing my teeth and all of life's tasks? Pretty easy if I am having difficulty at any given time. I close my eyes and I pretend I'm a billionaire and I  have servants that see to my every need. Better than acknowledging my disability 24 hours a day, it gets exhausting. Another one for the sand option. I could go on and on with specific examples but allow me to look at the bigger picture of my life.

What I once deemed as "Count me out, I would never live that way" has morphed into a completely different check list of Must-Haves and Must-Be-Able-To's. I am okay and will continue to, live, laugh and adapt to my new version of being adventurous and live my life surrounded by love, light and positivity through my attitude and those family and friends who love unconditionally. For me, and only for me, I have a DNR and draw the line at getting a tracheostomy. It usually adds years to one's life but it isn't my cup of tea. To be clear, I have watched many, many docs on ALS and many have been trached and vented and continued on with happy lives.

So, for this oddly handsome cat, what was once an unacceptable way to go on living, is no more. For today, I am happy and complete. I have love and laughter in my heart and life. I am willing to accept life on life's terms. The human body and mind are amazing at adapting and most of the time heals itself. I plan on hanging around Studio City for years to come. In other words, I got this and if I drop it, then my family and friends got this for me.

For me the answer is "Draw The Line In The Sand" - allow the ocean to erase and redraw further down the beach as many times as I desire. We all have our own Threshold for what is bearable and what is an acceptable way to go on with life. Where do you draw the line? What is too much to deal with? When do you throw in the towel? Are you flexible? If someone told me a few years back I would have ALS and be blogging about it, I would tell them they're crazy. I'm much too healthy to get it and it only happens to other people.

Today's blog is dedicated to all of us who have said "I would never..." 

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

Peace out!!!

Anton