11. Progress

Well folks, I wish the title of this missive could be a little broader in scope, but sadly the good ‘ol USA had what I consider to be a disastrous day yesterday. I am unable to wrap my head around it - and dearly hope that my worst fears (which I really don’t need to add to my already full platter of fears) are unfounded. However, as I said in my last posting, I tend to take people at their word, and the words being uttered are frightening. And so the sinking pit that consistently resides in my stomach has progressed just a little bit today. I hope I’m wrong. I hope that the huge number of people that voted for this regime have seen something positive that I have not and that it manifests in beautiful ways. But for right now, all I see is a complete lack of checks and balances - all four top tiers of our government in the same radical, inhumane, hands. And so the omni-present gnawing in my stomach remains - is even fortified. But, we shall see. In the very short run, I hope that my friends in the LGBTQIA community, of darker skin, of differing philosophies, of strong beliefs that have been outspoken, of other religions and those running from oppression are all OK. I hope no more women die while waiting for some politician’s rule about when they may terminate a pregnancy to time in. I hope that the changes to the general rule of law, retirement and healthcare are not as draconian as promised. And I hope that in the next four years the other side (mine) gets their shit together and fields a great candidate with a great, easily articulated and sensible platform. And that the damage promised by this administration is not irreversible. But this pit in my stomach is bigger today, and I fail to see an upside. And I just wonder - Folks who voted for Trump… Would you feel as scared for your own self if Harris had won? Are any of the proposals from the left side of the aisle going to hurt you as much as the right’s are going to (potentially) hurt me (and others)? I’d like to be able to understand that.

We need our country to care for its aged people and its infirm. Sadly, I fear I’m in the minority here, as the recent election has proven. As I’ve mentioned before, the cost of living in a care facility is astronomical, and the facilities themselves are often dire and the ones that take government assistance are downright awful. The preliminary insurance (long term care and life) costs so much that many people ignore that option in favor of being able to live in the present. I know I did. We need advocates that can make sense to a 30 year old in excellent health - to convince them of the necessity of planning for something like this - and to make the options affordable enough that the sacrifice up front is palatable. So if we can’t count on the government to make care and comfort possible, who should we count on? Our children already can’t afford to purchase a home. People are living in debt. Our families are busy working  - there is an actual proposal by people aligned with the new administration to raise the retirement age to nearly 70. How can we expect our families to care for us when they are forced to work until they’re nearly infirm with age themselves? We need to advocate for affordable care (see what I did there?) that is also hospitable, and won’t force the sale of a family home or the divestiture of all funds. We still need to care for our children, in the same way our parents cared for us. We need to make better progress here, and not allow for regression.

So, the only progress I can write about today is mine. Since being diagnosed, nearly 18 weeks ago now, I’ve found previously hidden levels of motivation and clarity. I’m writing well and often. I have solved my ages-old book problem. (Years ago, I started a novel with characters I love and an opening set-up that is really good. But I could never find a proper story, no matter how many times I revisited it. Well, I have one now - and I’m going to write this thing. Along with this blog, and with the Storyworth project.) My numbers and short term memory are still completely shot though

Right now, I’m really feeling like it’s the music & light trial that I’m doing that is helping me to progress. (As previously discussed, I spend a minimum of a half hour a day in a dark room listening to curated (by me) playlists that are synced to a light source that flickers in time with the music.) There is also, of course, a heightened awareness that I don’t have all the time in the world to get stuff done - and if I want to do anything, I better get on it. But I need to do more. I don’t quite know what that is yet - I’ve got many unplayed instruments at my disposal (and right now my hands work well enough to play) that remain on their stands gathering dust. I’ve got a desire to be a better advocate for my needs and beliefs in this horrifying political climate. I want to get this blog out to the mainstream. I want to be a visible spokesperson for the Alzheimer’s community. I want to remove the stigma from this progressive disease, and raise awareness - that this is not our fault. 

So, for those of you who want to help with my personal progress, here’s how you can do so… Pointers to organizations that are advocates for change in perception and management of this disease. I don’t really want to be a fundraiser -  I have no real interest in “walk for a cure” type stuff. I want to help get information (like this blog, and, I’m sure, others) out and available. I’d like to get linked by organizations that are reputable. I’d like to speak on behalf of a community of people who are ashamed or scared or just not comfortable to speak for themselves and are plain underrepresented - despite growing in number daily. We all know someone who is - or will be - afflicted. We need to make testing more readily available (There are strides being made in this department, but they need to be approved and covered by insurance. And easy to get.) We need to get the cost of medication down, and the quality of medical care up. (Also strides here.) We need to get the quality of care raised. We need to make end of life choices easier. We need to get help and care for our caregivers, lovers, children, spouses, friends and family - whose lives are terribly affected by this disease. I do know that people are working diligently on these things already - but I also know that when I was first diagnosed, I had to wade through a morass in order to find some of it. And it’s still not enough. Nobody is too far gone to get help, but a lot of people are too far gone to find it. So if you know it - let me know. If it doesn’t exist, let’s work together to set one up and run it. We need to make progress in our perception of the disease, and we need to make it possible for those afflicted to progress themselves. And I want to help advocate for that. But I require assistance - from you, my friends, family and now readers. Spread the word. Get this blog out so that hopefully someone with the right connections will read it, and spread it far and wide. Let’s create connections - build a community of those with Alzheimer’s and those caring for them as well as those who are just concerned about the trajectory of this terrible - currently incurable - disease.

And now, as always, I…

Thank you for reading! I know this post is a little rambly.

Sean