64: Tidbits

First and foremost, everything is good. I’m well involved with the book, and have actually already submitted a letter of interest to an agency. I’ve not heard back, but I’m moving forward. Yesterday, I went to Barnes and Nobles (I do remember when they had one store on 18th street and 5th ave in NYC, and it was massive and great - not this mall store they are now) to look for books similar to mine (I didn’t find any) and for publishers who might be interested in content like mine. I found a few to look at, so that’s cool. I’m not reaching out to anyone yet - I think an agent would be the first step. I have dreams for this book that are beyond what might be possible if I self-publish it, so I am really going to make an effort to sell it to a legitimate house. The select few who’ve read it have been pretty complimentary. I’ve got a good friend serving as an editor and she’s made some terrific suggestions. I’ve set myself a goal of having it done by the end of February, so this might be the last update - unless something major happens - for a little while.

A few items of interest.

• I DO NOT have Tuberculosis. That really shouldn’t come as a shock to anyone. What DID come as a shock was the positive TB test result from one of my blood tests for the clinical trial. I’ve had the test done twice since, and both times it was negative, so I’m clear. To be fair, it was never showing that I HAD TB, just that I had been exposed at some point, which might have been the case because I’ve lived abroad and travelled extensively, but even that has now been ruled out. So lesson of the day… Second (and even third) opinions are good!

• The speaking bookings keep a-rolling in. I’m super happy about that. Here’s a reminder that if you want to, you can register for one here:

  https://us06web.zoom.us/webinar/register/WN_yx-DOwasROaLHhY1PUZhUA

  It’s called Reimagine Alzheimer’s and it’s being presented in conjunction with the Pennsylvania Department of Aging, Dementia Friendly PA and the Alzheimer’s Association. It’s this Tuesday, the 13th of January at 10AM.

• In yet another episode of my least favorite (but most consistently thought of) show “The US Healthcare System Sure Does Suck, Now Doesn’t It” now broadcasting on some network with the balls to defy the current administration’s gestapo tactics on journalism (and many other things - I’m looking (with sympathy) at you, people of Minneapolis), I got a call from the infusion center that I’ve been going to every two weeks for… checks calendar… 68 weeks now telling me that my scheduled infusion (checks calendar… number 35 for those of you who are counting) was cancelled. It seems that even though I’ve been doing these things for… checking calendar again… 68 straight weeks without fail, there was a question about whether or not I should have it because my (bad) neurologist’s office had neglected to send in the proper paperwork. This call happened at 11AM on Friday. The neuro is closed that day - as he is every Friday. So, in light of the lack of paper, the best the scheduling team could do is cancel my booking. (Now, let me be really clear here. I LOVE the scheduling team at my infusion center. They’ve been really good to me, and are always super pleasant when I call. This is not their fault. They’ve got no choice - and no power. And they were super apologetic.) The way I understand the process now is this: Because I do not go see my Neurologist every 2 weeks after my infusion for a follow-up, he needs to send an addendum each time. Now, kudos to his office for not screwing that up over the past… checking calendar once again… 68 weeks, AND I’m being cognizant that this is a busy and holiday-filled season so a single mistake is not the end of the world. This is more a scathing indictment of a system that does not allow for a realistic process to occur. I don’t really know whose fault the creation of the system is - insurance or hospital - but it’s stupid nonetheless.

  So… I was told that if I could get in contact with the neuro office first thing Monday, the best I could hope for was being fit in later that day, so as not to totally screw up my schedule. (I CANNOT have infusions less than 14 days apart, so if I miss a day, the entire schedule has to be changed. The good news is that I’ve only got (no need to check the calendar for this… I know it and live it) 5 (inclusive) more before I’m done with the initial phase, so it’s not THAT big a deal and… I’VE ONLY GOT FIVE MORE BEFORE I’M DONE!!!!!! YAY!) I hung up the phone and sent off an email to the office manager. I called the office and got their service and left a message. And my phone rang. It was the scheduling person telling me that a fax with the addendum just came in, and I was all set. And 25 minutes after that I got a call from an unknown neurologist following up on my emergency message. I thanked them and said I was taken care of. And I’m going on time and on schedule for my infusion number… quickly checking my calendar… 35 (of 39). So good. It all worked out. So I don’t know where the flaw is - and in the end it is barely worth the 500 vitriolic words I’ve wasted your time with - but it made me angry. So I vent here because I can.

• I got an email out of the blue asking me if I might be interested in being on a panel for a major international conference in LONDON. All expenses paid. So.. yeah. I guess so! 🙂It’s still very much in the works - the group is putting together an abstract for submission, and that has to be accepted by the conference folks - so it could be months before I know anything - but it’s super gratifying to be asked because…

Clearly what I’m doing here is making some sort of difference, and that’s what I’m striving for. I’m going to spoil something from the book here in closing, because I really like it - and I like the serendipitous way I found it. I was watching a show called 1972 - The Year That Music Changed Everything. It’s pretty good, and of course, the music in 1972 was off the charts great, so it was really fun to watch. It’s also sad to see that we are basically still fighting the same battles and that so little progress has been made. I’m looking at you people of Greenland. I really want to come to your country someday, but I want to do it in the reverential and respectful way that it should be done. Here is at least one American who does not believe in this hurtful grandstanding. So anyway, the show was focusing on John Lennon and his protesting against the war in Viet Nam and the writing of the song Imagine. As they were showing something (I don’t even remember what) there was a voiceover of John saying:

“To do something is better than not to do something. We have that choice, you know. What little choice we have. I don’t know how much effect we have. But what’s the alternative, you know? Be apathetic, not bothered by anything? Then what would I do then? I just wanna live.”

And that just struck me so deeply. It’s exactly what I feel about what I’m doing here, with the writing and advocacy. And even though Lennon and I were/are fighting very different wars, the sentiment is still the same. And for all of you out there who are doing your thing fighting for the good of this country in the face of overwhelming odds, keep going. It was apathy that brought us here and it will be passion that heals us.

And for all of you (us) that are fighting for resources, medications, support and the end of Alzheimer’s I thank you from the bottom of my heart. Without you (and this) my life would not be nearly as full as it is right now. This fight has made an otherwise bleak situation much brighter.

Thanks for reading

Sean