51: Heavy

Nothing fun here today, folks. Strap in, this is a heavy one!

I may hide it well in these pages, but the truth is I live every day with a knot in my belly. A knot that comes from worrying about what may be - despite the effort I put into pushing it off. A knot that grows stronger and harder as I ponder the fact that it’s probably inevitable. There’s still far too much to learn about how the brain works to even begin contemplating the thought of a cure. A knot that realizes that this inevitability will force me to make some terribly difficult decisions for myself that might (will) hurt those that I love deeply, despite the fact that they’ve signaled their understanding of my wishes and desire to accommodate them. I know my wishes will be met and I hope I have the fortitude to make them happen. I know that this is not a “soon”, but it is certainly a “when”, not an “if”. Unless we (collectively) find a cure. That’s a terrible weight to have hanging over you at all times, and sometimes I feel it heavier than others. Now is one of those times - and it’s for the following reasons:

We’ve assisted a dear relative (who reads this blog and I do NOT want her to feel poorly by reading this. We’re doing what we want to do for her, and would have it no other way. We love her deeply.) who has some form of undiagnosed dementia herself, in moving to us so that we can help with her care. But her disease makes her forgetful and confused (and I stress, there is no blame or recrimination here at all) which triggers my anxieties about myself and what is sure to come. It is hard for me, and I’m not always as kind or understanding with her as I should be. But it is terribly sad to see a once beautiful mind become lost to forgetfulness and confusion AND to know that your own mind is heading steadily down that same path. I know this because:

Yesterday I went to day four of the transcranial stimulation trial. For the most part it was a far easier process than before. No EEG leads and only 4 or 5 connections to a low voltage source. The traffic getting in and out of the big(ish) city was also clear, which is novel. The test, this time, involved being asked to memorize 10 words that were shown on a screen in front of me. Then I had to do 3 simple math problems (for distraction) and then verbally repeat as many of the words as I could. The entirety of the test was repeating this process (with different words) 60 times with and without electrical stimulation. Now I want to present this: I’m not a brawler. I’ve never been in a bar fight, or even been in any sort of physical altercation (except perhaps in middle school once), so I speak of feelings here in alliteration that I don’t actually know. But I imagine being gut punched hard, and how painful that must feel - especially when your gut is already churning because of the aforementioned belly knot. So that feeling occurred when, during the very first run of the test, I was barely able to remember 3 of the words. I slammed headfirst into a solid brick wall of nothingness. There weren't even any internal hints. I could remember no words beyond a guess of the ones that I tried. Now… Imagine, if you will, having to do that SIXTY times over the course of two hours with the same negative result. With the anxiety of the failure building, making your gut churn even harder, causing more anxiety, making the concentration more difficult, making my accuracy even worse and… making me extremely sad to boot (which didn’t help the cognitive process either).

So look, I’ve known about this word recollection problem. I’ve failed a version of this same test on every neuropsych evaluation that I’ve ever done. It’s what got me diagnosed. So it’s nothing new. (Although I did have hope that when they hooked me up to the current, I’d miraculously be able to remember everything, which didn’t happen.) But sixty times, man! That’s just cruel. I was wiped out and devastated. Because I see the trend, and I see it in my relative, and know that her condition is eventually going to be my fate - despite other things (like writing and talking) all currently being far stronger than before. And I’m just fucking miserable about it. And questioning myself. Is what I’m doing helping at all? I still think so, and I do have that feeling reinforced by readers and friends, but I’m still struggling a bit today. And, to top this off:

This weekend, I was told, with no hesitancy or uncertainty, that I was selfish for planning my own death at a time of my choosing. Now, to be fair, this was a person who didn’t know me, and I had expounded on my feelings, perhaps inappropriately, in a small gathering. I also don’t know her or her story either. But I will say this: I do not, (and I know you know this) view my own death autonomy wishes as selfish in any way shape or form - especially if I do it with my family and other loved ones nearby and involved, giving them a chance to say goodbye and to grieve together (presuming they grieve at all!). I respect and accept all choices people make as long as everybody is content (or has at one point made their wishes known) with them. I do not believe MAiD is a “slippery slope” towards forcing the mentally ill into death camps or some such nonsense (as confirmed by this nicely reasoned paper). I believe it is a humane choice that I will make (and have made) for myself after a long and detailed conversation with my wife and family. And again, if a different patient and their family choose otherwise, that’s their choice, and I support it wholeheartedly. I do not support, of course, terminating the life of someone who has expressed the wish to be kept alive, and nor do I support keeping someone who has expressed the wish to have MAiD (or something like it) alive for any reason. THAT is selfish. (We’ve actually had this conversation in relation to our pets - how long do you keep a terminal cat or dog, for example, alive - with chemo or dialysis - when life is an eternal battle with pain. Who are you doing it for?) I do, however, understand that dementia is a different beast here, and that we’re not exactly considered terminal (because there is no specific estimated “time to live”). However, I believe that we are our “SELF” and not our body, and that when the “SELF” passes, keeping the body alive is not necessary. And I know that some people will say that there is often a rising glimmer of “SELF” in a person with dementia, and I believe that to be true, however, that’s not enough for me. And we all should have the ability to make that choice for ourselves, when we are able, and have those choices honored when we no longer are. When we left the gathering that spurred these thoughts on, I asked Wendy if she thought I was being selfish in my desires. She affirmed that even though it would be devastating to her, it was not selfish at all, because I was involving her in the process of thought and action. It would be selfish, she said, for me to sneak of and kill myself alone, without giving her a chance to say good bye or have any form of closure or understanding. And that I agree with as well, and I’m so thankful to have a woman of such strength by my side in this journey. But I’m still sad.

But the clinical trials are good. I’m glad, despite the overarching sadness of today, that I’m doing them. I’ve got copious amounts of skin in the game! Anything to help the cause. Because if they find a cure, and in the worst case, I spend my life not remembering words a few seconds later, but can still remember who I am, and who I love and why, it will all be worth every speck of pain I put myself through. I do not want to die (now). I want this disease to be gone. I want my “SELF” to remain, and I want this knot in my belly to go away. So please, if you haven’t, consider throwing a few bucks into the pot to support the Walk To End Alzheimer’s. If anybody’s going to be instrumental in finding a cure, it will be the Alzheimer's Association. The link to my walk page is http://act.alz.org/goto/SeanWalk. Five bucks, ten bucks, a hundred, a thousand or anything in between. It all helps, and I will be most appreciative of the support from readers like you!. I’ve also got a raffle running, as I alluded to in the last post. If you donate just $7.77 (in honor of the 7,000,000 Americans with Alzheimer’s) to the walk, you’ll get a ticket for a raffle to win a Beacon40 light. I’ve talked a lot about these things and how essential they are to my self care (and sense of well being). You don’t need to have Alzheimer’s to benefit from these lights. The benefit of the 40Hz spectrum is well documented in research by MIT, Harvard and more. If you want two tickets, donate $15.54. A donation of $23.31 will get you three tickets, and onwards and upwards. (We picked this sort of obscure method to differentiate raffle entries from other donations which tend to be in whole numbers.) This is an easy, low cost way to potentially get a great tool for your mind and well-being, as well as support a cause that is deeply meaningful to me, and should be to you. As I’ve said before, this is a bipartisan effort, which has already achieved much - but not enough. Let’s help keep the momentum going. Please.

And no matter what else befalls,

Thanks for reading!
Dy