43: Dignity

I’m going to start with some music this week, for yesterday marked the release day of Worlds In Collision by blog favorite Stephan Thelen. And let me say from the start that this is an amazing album that draws as much from Thelen’s past works as it does from the seminal 1981 album My Life in The Bush of Ghosts by Brian Eno and David Byrne. Interweaving found vocal tape snippets with David Torn and Jon Durant ‘s textural distortion and Thelen’s fractured guitar runs, the band falls behind a wonderful off-kilter groove anchored by Yogev Gabay on Drums and the keyboards and vocal manipulations of Fabio Anile, both members of Thelen’s band Fractal Sextet (who might have been the first musical addition to this blog many moons and brain cells ago). There is nothing at all cliché about this record. It treads new ground with every track. While behind every track are remnants of …Ghosts and Thelen’s previous outings, there is also here, a completely new take on both. This is not derivative music, but the perfect amalgam of growth, expansion and continued discovery. The album concludes with a bonus track, which is a remix (so much as to make a completely different piece of music) of one of the previous tracks by maestro (and yet another frequent mention on this blog) Bill Laswell. As another tip of the hat, one of Laswell’s earliest recording dates was on a track on …Ghosts bringing this concept full circle! Kudos as always to Giacomo Bruzzo’s Rare Noise Records for releasing this album - in fact rising from the near dead to give us this and the previously mentioned Fractal Sextet record, Sky Full Of Hope (both of which will remain in constant rotation in my house and car). Stay in the game, my friend. The world needs this music. My lights enjoyed the hell out of this session, by the way (do you like how I personify the lights? I know they’re not real, it was me who enjoyed the lights - I’m not that far over the edge yet!) creating a really immersive first listen to the record. Time didn’t even pass before it was over. That’s how engrossing it was.

The next week promises to be quite busy as it seems there is a lot to prepare for when meeting with members of our government. First up was buying a purple shirt - as the Alzheimer’s organization’s color is purple (signifying the bi-partisan nature of the need for a cure). I was able to do so, but finding purple in the women’s section (for Wendy) was much harder. Apparently it’s not a legitimate color for women to wear this year. I also designed a business card, which I quite like. Hopefully I’ll be able to convince some members of our government to read and share this work. We’ve also participated in several zoomish meetings and created some connections with folks for our upcoming in-person gatherings in DC. The vibe amongst all attendees is extremely positive. The folks who have been in previous years say it’s an incredible experience and I am really looking forward to both the pre-hill sessions and meetings as well as our day traipsing the halls of congress and glad-handing senators and representatives (both of our district and others). As I have noted previously in these pages, this is a single issue where we should have no disconnect. Alzheimer’s is a non-partisan issue. You can believe in the current administration or you can hate them; You can support trans rights or not; You can be religious or agnostic (or anywhere else on that spectrum); but I can guarantee you one thing. You are less than two degrees of separation away from being personally affected by this disease. It’s that prevalent. In this, we are all fighting the same fight, and it makes no sense to oppose it in any way. (We can discuss Death with Dignity at another time, but researching to find a cure should be offensive to nobody.)

We had an interesting wildlife encounter yesterday. I was out back working on the pool, when I saw a flash of motion to my left. A tiny young bunny ran out from the bushes behind the house and dove directly into the water. I started freaking out and calling Wendy for help, while I ran to get the leaf scooper net to try and scoop the little thing (who was swimming quite strongly, by the way - but doomed because there would be no egress and it would eventually tire) out. From the house came the far more decisive Wendy, who immediately assessed the situation, and while I was still on the opposite side of the pool, ran up like a Baywatch lifeguard and scooped her hand in, picked the terrified bunny up, and tossed it safely onto dry land. It took off like lightning, scared, but safe. We were sure to put our animal exit ramps in immediately to (at least) attempt to allay future drownings. (Edited to add that we saw the little thing a few days later on the other side of the pool fence. Smart thing!)

OK. I’ll discuss death with dignity now. So much for “another time”, huh? I was watching yet another TV show that has a (semi) central character with Alzheimer’s. He’s talking with a guy about life and death and the dialog goes like this:

Guy: “What about family… Aren’t they important?”

ALZ guy: “If you can remember them… But when I die I just want to be present. Have my memory… And remember.”

That struck me really deeply. It’s what I’ve somehow needed to articulate all nicely wrapped up in a tidy little exchange. It’s why I’m so dead (no pun intended) set on passing when I want to - not when the medical/religious/government establishment says I should. It’s why we need to fight so hard for Medical Aid in Dying, not only for the terminal, but for those of us who consider our time on this planet to be at or near its “best used by date”. I’m not sure this will be on the agenda at the AIM summit next week, and if it’s not I will not bring it up - we have a very specific set of legislative goals - but I will work, then, to ensure that it’s a goal for future summits. Now, don’t get me wrong. I’m not suicidal. I’m fighting like crazy to ensure that I can live as long and productive a life as possible - and I think I’m doing a pretty darn good job of it, considering the circumstances. So, this is not a cry for help, or any indication that I have ideations towards an immediate passing. It is just a call to allow for this humane procedure to be codified into our laws in all states so that those of us who may, for whatever reason, choose this option, as the least of all possible evils, can do so safely, comfortably and in the arms of our loved ones when we are ready. I don’t see that this is a lot to ask, or to expect.

I’ve taken a stab at a speech I might, if ever allowed, give at a hearing on the matter. This after reading an article on MAiD in the New York Times, which I’m sharing as a free link: I’ll skip the honorifics and skip right to the meat.

I’m here today to speak on behalf of the growing number of people who are, or will be stricken with Alzheimer’s or another form of dementia, which will ultimately result in complete and total memory loss, the disappearance of one’s sense of self, and myriad other issues. By the year 2060 - only 25 years from now - it is estimated that 14 million Americans will be diagnosed with this disease. I myself, was diagnosed in 2024 at the early age of 60. Since that point I’ve been doing everything I can to create a vibrant, long life - I’m taking both the medical and more holistic journeys to effect brain health and am advocating for the continuance of medical research into a cure for this dreadful malady. Specifically, today, I’m here to discuss Medical Aid in Dying (MAid), which I believe should be a human right for all people who have a terminal diagnosis - whenever they want. And make no mistake… Alzheimer’s is a terminal diagnosis. Whether or not we die at any prescribed amount of time, we die in bits and pieces.

Now, I don’t want to die right now. I’m in the best place I’ve ever been, thanks to the work I’m doing on myself - but that takes a phenomenal amount of will and time. It’s all I do - and I’m happy to be doing it. What also needs to be understood is that although the day I was told I had this disease was the very worst day of my life, I did not want to die then either. I didn’t know then that I would become the man I am today, but I did not want to die. But I knew one thing, and I knew that with a certainty that has not wavered since. I knew that I do not want to end up slowly decaying in a bleak and overpriced memory care unit somewhere, visited with decreasing regularity by my friends and family. I do not want to cause my loving wife undue pain and extraordinary financial loss. I do not want to forget myself. I do not want to forget my wife or children or grandchildren. I don’t even want to forget my cats. I want to die remembering all that my wonderful life has been, and glory in all that I have been able to accomplish in this world. I want to die surrounded by as many loved ones who care to be there, and I want to know them, and my experiences with them all. I don’t want to die alone - and make no mistake - dementia death will be akin to dying alone. I watched my Mother do it. She didn’t know who I was, as she slowly starved to death in her void. This has been my worst fear since watching her (and my grandmother before her) waste away, alone in their heads. And I live and do combat with it every single day.

Some may not choose the path of MAiD, and that is their right, without question. But it is their choice (not the state’s, family’s or religious institution’s) to make. And the sad truth - and I don’t question this at all - despite the absolute horror of the concept - is that choice has to be made while one is still whole. Imagine that. This alone should be enough reason to devote massive amounts of money and time towards finding a cure - but that’s not the topic today. Very early in my journey, I heard a quote which has resonated deeply with me ever since “You have to give up a few good days in order to not have a lot of bad ones”. I know, without hesitation, that I am prepared to do that, as are my wife and children for me. The problem is that there is no legal way to procure MAiD when you are lucid and have been diagnosed with Alzheimer’s. There is no humane way to achieve this rather simple sounding goal. There is no quantification. No external judgement. No medical exam. Nothing exists except the patient’s own choice as a living breathing lucid human that they believe that their moments of episodic existence are nearing their end and they wish to end their corporeal time secure in their own home, surrounded by their loved ones. In all honesty, I think that’s all any of us would want.

All I’ve got health wise right now is that it’s been over a week since I got my approval for the Inspire surgery - I’ve reached out to my surgeon’s office and the surgeon himself (over the web messaging app) and have heard nothing from anyone. I’ve never encountered such laxitude from a doctor’s office before. A few days, maybe but nothing for over a week? Even if there’s no date to schedule yet, a reply is only courteous. Again, I don’t see that this is a lot to ask, or to expect! I’m trying to schedule a bunch of stuff for July, and not knowing the potential date is causing me to delay that. It’s just frustrating. I went to the Inspire website, and there is no other surgeon around me who is covered by my insurance, so I’m pretty stuck with this guy - who I’m sure is good - but his office is lousy at communicating. Somehow we, the people, deserve more than this, don’t we?

Thanks for reading

Dy