Milestones, marking the unknown time remaining

This past weekend, Becky and I low-key celebrated our 23rd wedding anniversary. We went out for dinner early... and home early. Watched TV with my sister (in town for a brief, but welcomed, visit). Went to bed. No fanfare, no overly romantic gymnastics.

... Brace yourselves, 'cause this gonna get real and heavy and raw.. continue reading at your own risk!...

The biggest part of this is because... well, me... my current mental and emotional state, as much as physical. Thinking about the past is bittersweet... about the future, downright depressing. I am more easily emotional thinking about such things. Frankly, I try to avoid thinking about milestones... anniversaries, birthdays, holidays... but my mind is inevitably forced to reckon with them, often at an inopportune time. I will momentarily weep but fight back the tears... sticking fingers in the leaks... futile efforts to keep the inevitable break of the strained, cracking, weakening, emotional dam. The flood of tears and wailing will be gut-wrenching... heartbreaking to those who have the unfortunate audience to the drama... but needed... so, so, so sorely needed. It'll come, I just have to give myself permission to let it unravel when it does.

I'm not going to sugarcoat it... with the way I feel, physically... the way things feel like they're progressing... like they're faster than previously envisioned and discussed with doctors... I hope I'm wrong, but it just doesn't feel... well, good.

Yeah.

It's pessimistic. But y'all don't know what it looks or feels like from my end. As I said to Becky as dinner, "It's hard... really hard... because I'm forced to experience losing so many things before I lose it all." All of what's happened over the last year feels so increasingly isolating. At a moment when I should be celebrating 23 years of marriage and nearly 25 years of being together, all I could think of was how it might be the last one. What a schmuck, eh?

It's hard to swallow. Because lately, I feel like I've done myself and others such a disservice over the years by... not living life to the fullest... not appreciating the smallest things... getting bogged down in the stupid, petty, little, crappy things that don't really matter.

I feel like I could have been a better son, brother, cousin, boyfriend, lover, partner, husband, father, friend, and colleague. I could have done more with less. I could have made different choices. I could have worked harder. I could have played more. I could have loved more deeply. I could have listened more closely. I could have laughed more loudly. I could have...

I feel like I should have treasured the moments I had with the people I've loved throughout my life more. I wish I had been able to spend more time with my mom before she passed away. I wish I had made the effort, as inconvenient as the circumstances at the time seemed, to be with friends and family when the opportunities presented themselves. It's not as if I did nothing... but I could have done more.

I am not the man of Frank Sinatra's "My Way". I would love to be able to sincerely belt that tune out at the top of my lungs... and meagerly resonant voice... but I'm not that man.

However...

I want to be more for others. I want to transcend my self-isolation.

I am trying to be more mindful of all these things, now... taking advantage of the moments when they present themselves... while I can. Even in the midst of continuing to work, and think, and be something in the world, I owe it to myself and to those of you out there that I know and love. I'll try. I'll probably still falter... and sometimes fail. I'll need help succeeding. As I ride this out, I may need the moments, the people, to come to me more and more (physically or virtually). Some of you already have... and I love y'all for it. It lifts me up more than it makes me cry.

I want to be strong... to be hopeful. But hope is very hard with ALS, because it is such an idiosyncratic disease. No two people have the same experience or longevity, but the overwhelming majority aren't around long. There is one clinical trial that I hope to be part of... hopefully soon... that I hope works. Nothing is guaranteed as so many others have failed... not without best intentions and reasoned hope... just because it's a really hard nut to crack. But I can still hope it happens, that I'm there, and more is learned and progress is truly made.

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My goal was not to make you cry, just to take a moment to be introspective. Think about how you could avoid how I feel now... about how you could be more, do more... for yourself and for others. You never know what the future will hold. I know I didn't have THIS on my BINGO card.

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But just remember kids... it's still ALWAYS OK to punch a Nazi. Because fuck Nazis. 😉