S2:E3 - Flies, mosquitoes, ants & itches, fuck off!

"Fuck Off" - Logan Roy

The "fuck off" in the title is my nod to Logan Roy, a great character  inhabited by Brian Cox. But really, where in hell did those nasty tiny ankle biting mosquitoes come from this year? I haven't seen a full sized mosquito since 2019BC (Before Covid). Anyhow, it is very annoying and frustrating to not be able to shoo away flies, squish mosquitoes, pulverize ants or scratch an itch. It never fails, when I go in the backyard to get grounded and fresh air before I start my day, it takes about 5 minutes for a fly to start annoying the shit out of me and totally destroy my serenity. It has nothing to do with me being Italian, at least I think not. Just one of the obstacles in not having full use of your arms. Also, I don't have the range of motion to even pick my nose, and you really can't ask anyone to take over that house cleaning task. Thank you for inventing the personal humidifier to speed things along if you know what I mean.

Today's blog deals with my perspective on my life and how many options exist to choose from. I'll get into that in the next paragraph. For now, I want to let you know that I was not loving writing my blog for a while, it was just too hard using my hands, and correcting all the typos. It was causing me neck and back pain. Now that I am using my eyes to write, I am digging it again. I can't believe I just said that, until recently, I despised having to resort to this fucking device. It's so much easier for me and zero pain. Moving on, no particular play list today, just a mix of The Smiths, soul, Steve Miller Band and whatever else pops up. It's a smorgasbord type of day, musically speaking.

Food & Movies - top perspective commodities

In addition to my newly uncovered perspective shifts, I will take y'all on an update tour of our advocacy work, along side the ALS community's work, about the progress we have made with Congress. By now, we all know my go to phrase, "I only have good days or great days, no bad days allowed". Now bad days do happen on occasion, but they are few and far in between. I truly believe, what you think about, you bring about. So if you're positive and optimistic, it affords you an extra barrier of protection from going dark. On the flip side, if you're negative and pessimistic, you're inches away from the dark tunnel of despair. I'm not preaching to anyone, we should all have the freedom to live as one sees fit, it's just what I believe for me. So as my body has steadily progressed in a downward spiral, the more I cursed it and harbored humongous resentments. Finally, getting sick and tired of the battle against my body, I came across another way to view my dilemma. I took the opportunity to look at it from a new perspective. My body is not failing me but just the opposite is true. It is fighting like hell 24 hours a day, every day to fight the enemy. In this case; a mean, unrelenting, evil disease. That little shift takes me from a deep anger to a very livable calmer existence. It's a major mindfuck to grasp for me. And rather than being frustrated by the flies, mosquitoes, ants and itches, I am extremely grateful to have a caregiver and a wife to help me with those annoyances. Although Mari can get a little aggressive when it comes to scratching my itches, but I am grateful and blessed none the less. My body is at war, fighting with true grit, amassing victories and defeats every fucking day. The onus now shifts to the other untapped resources within me to fight this war on multiple fronts. FIGHT. LIKE. HELL.

Exactly how I sound when doing my speech singing exercises - Puttin' On The Ritz

I'm flawed, defective, imperfect and full of character defects. I do my best to not slip into old behavior, but somehow a few get by the goalie on a regular schedule. When it happens, I take two actions. First off, I apologize, or make amends, without any excuses or buts, just a direct apology for my behavior. Second, I do my best to not repeat the same behavior. I'm bringing this up because earlier this week, my reply to a friend's email was over the top inappropriate. I was ashamed of myself, I let my sensitivity and my inability to read way too much between the lines get the better of me. My friend graciously accepted my apology. Getting back to perspective, think about this. In 50 years, when people watch Jurassic Park and Independence Day, who could fault them for thinking that Jeff Goldblum was the major box office movie star of the 1990's (He co-starred in both blockbusters). Ha, it's all about perspective. Skipping around a little, there is a perpetual blanket of loneliness that is by my side every day. I'm a very fortunate bloke, I have my wife and caregiver, I have friends and family that call, text, email, visit and actually send letters and packages for me and Mari. Regardless, I can't help feeling lonely in my disease. I'm determined to find another perspective on those feelings and thoughts. I've spoken with my fellow ALS sufferers and it's an all to common reality among we cats. Feeling alone is not a healthy way to live, I need to work on that. It's a weird one, it is healthy and necessary to have alone time but it is not healthy to feel alone.

I really don't have much more to share about today except my earlier mention about the progress we have had within the halls of Congress, which has the potential to be a game changer for those of us with terminal neurodegenerative ailments. I still think it's a dream/nightmare that I am in that category. There has to be a better way to be the center of attention. Oh well, that ship has sailed without me on board. I am very aware that last week I left a couple of exciting cliffhangers dangling out there. Well, as any good suspense writer, they won't be revealed this week, but I share over the next two weeks, in episodes 4 & 5. Now I want to bring you up to date on our congressional meetings.

Don't Mess With Us - Impossible is not in our dictionary

This year, we have had the opportunity to speak to members of Congress, not once, but twice. At first we thought, will they really hear us or do anything about what we have to say? Regardless, we went forward and told our story. Our main goal was to educate these members on what it’s like to live with this disease and to ask for funding to bring promising new treatments to people with ALS. We are happy announce that the Accelerating Access to Critical Therapies for ALS bill (H.R. 8662 and S. 4867) goes before the House Energy and Commerce Health Subcommittee on Thursday, November 4th, 2021 for review and a vote! It’s the first step in bringing this bill to the House floor for a vote. The ACT for ALS bill will expand access to experimental drugs and accelerate research and development in ALS and other rare neurodegenerative diseases. There are so many people like us that spoke up and fought for this bill and many organizations and people to thank, especially Congressmen Mike Quigley (D-IL) and Jeff Fortenberry (R-NE) who are the original sponsors of the bill. 

Mari and I will continue to lend our support until laws are changed and effective treatments are made available. Again, THANK YOU for allowing us to have the bandwidth to be advocates. We could not do what we do if we didn’t have caregiving help. It will probably be too late to help me, but if our efforts eradicate this living hell for future families, well then, mission accomplished.

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

Peace out!!!

Anton 

Just hanging with the Chin Strap Penguins