Just a note from Simon

I have a little bit of stuff from last week to talk about, but instead I’m going to talk about today since it’s still on the tip of my mind. Also, I’ve been having more problems typing lately so that might rear its ugly head. I don’t have any kind of autocorrect/autofill/spellcheck stuff enabled, because I want to be able to see what’s happening. Granted, I catch a lot of it by the time I get to the end of the sentence, but still. Aside from occasionally doing weird things out here, it can be a real bitch to get passwords entered when the sight doesn’t have the little eyeball to click. Anyway, today.

When Dad’s memory started going, he would always talk about how stupid he was now. If I had a nickel for every time he said “I can’t do that, I’m too stupid” once this thing started digging into his brain, I’d have quite a few nickels. He kept equating memory with intelligence. If I can’t remember anything, then obviously I’m not smart. This was frustrating on a number of levels.

You see, Dad was smart. Really smart. If something needed to be fixed or created, he could come up with the way to do it. He was a machinist, and his favorite part was making the machines do what he wanted. He had his own business building drag cars and came up with designs good enough to be stolen by the top kit manufacturer. And yes, a lot of his intelligence also came from his memory. He was great at remembering all kinds of stuff and applying those things he remembered to the situation at hand.

When I started racing, he was always tinkering with the bike. I spent a lot of practice time testing settings. I’d go out for a lap, then come in so he could change something. Back out for a lap, back in so he could change it in the other direction. He learned a lot about our bikes and as a side effect, he made me a great tester. When I’d come in that third time, I’d have to describe to him what changed in the bike. Not “last time you went up two clicks on the rebound,” but “when I was braking hard into the slow corner, the rear end was really smacking into me and the front end was trying to dive under the rut.” That was why we made a great team: I could tell him how the bike felt, and he knew what to change to fix it.

Like most things from my motocross life, that transferred over into real world skills. When I worked phone support, I could describe what the person was seeing like I was looking over their shoulder. Any time I’ve been injured, I can explain to the doctor exactly where and what kind of pain I’m feeling. Barb has marveled over all of the different medical nuances I’ve been able to describe over the years, especially during the cancer years. My dental hygienist has remarked on several occasions about my ability to describe what’s happening in my mouth.

That made a lot more sense in my brain.

Anyway, Dad was really smart and he felt stupid as his memory started to leave him. I would try to get him to understand that it wasn’t his processor that was failing him, it was his hard drive. He could still do the calculations, he just needed to store the equations in a different place. An external hard drive, like a notebook. Today however, I realized it might not have just been his memory loss that made him feel stupid.

We’ve got this big project at work where we’re trying to upgrade a thirty year old system to something more modern. Seriously, the whole company is currently run off of a Microsoft Access 97 database. All of the tech is a mishmash of versions of things cobbled together to work off this ancient system. They’ve tried to update everything a couple of times in the past, but This Time It’s Serious. We’re going to be going from Windows XP and Access 97 to iPads and web forms.

Fortunately, we have consultants doing the heavy lifting, one of whom is the guy who moved me over to the IT role where I’d always have his support. Until he quit a couple of months later and started working for his friend’s consulting company who our company keeps on retainer. He had started working on all of this conversion before leaving, so he’s spearheading the effort now. There are a lot of moving pieces, so he gives me things to do like setting up equipment or labeling shelves for inventory or what have you. Things that I can figure out a plan for, then turn off my brain and plow through it.

Today, I was unboxing a bunch of barcode scanners, putting IDs and velcro on them, putting velcro on the back of the cases of our fleet of iPads, then sticking them together. I worked out my system for what was going to go where and when and got to work. After two or three rounds, I realized I felt… simple.

If there’s one thing that pisses me off the most about my brain, it’s how I’m losing the words to describe things. “Simple” was the first thing that came to mind as it was happening, and it’s as good a word as any, I suppose. I was taking a scanner, taking the back off a label, sticking the label to the scanner, sticking a piece of velcro right under the sticker, then moving on to the next. I had already unboxed all of the scanners, made all of my labels, cut my pieces of velcro. Now it was just a little production line with nothing to do but follow the steps. Simple tasks being done by a simple man.

That’s what I pictured from the outside, anyway. I had my “I’m not listening to you” headphones on, listening to my music, a distant unfocused smile on my face as I plodded along through my task. Like Lenny in Of Mice and Men before he started killing rabbits.

Picturing myself like this, I thought of Dad and wondered if this was part of what he was talking about. While I was thinking of myself as “simple,” another generation could easily read that as “stupid.” Maybe it was a language barrier thing of his own.

So here I was, Simple Simon, doing all of my little tasks and I felt… content. I think that’s what drew my attention in the first place. Feeling content is something that happens very rarely in my world. That feeling of content was what was behind that simple smile, but what was behind the contentment? As usual when things start going right, I had to start overanalyzing and that’s when it hit me.

My brain was silent.

It wasn’t silent in a whiteout way, where I’m trying to access something and there’s nothing there (still just the two times that’s happened so far). Instead, it was like when the power goes out during a snowstorm. Initially, you’re surprised at how noisy your house had been. Even if you were just sitting on your couch reading, you suddenly notice how much noise the lights had been making. You miss the low hum of the refrigerator. That electrical aura that encapsulates your environment 24/7 is suddenly gone. With the electromagnetic interference out of the way, you realize you can hear the silence outdoors. Those seemingly quiet electrical lines are somehow even more quiet. There’s hardly anyone outside because of the snowstorm, so you don’t even hear traffic moving anywhere. You can almost hear each snowflake when they touch the ground outside.

Is this what the regular people are like? All of those people without ADD and constant inner narratives and thoughts and words and ideas and feelings and everything in a constant mental maelstrom. Do they get to experience this quiet all the time? Of course, I was spoiling it a little while trying to think it out, much like we do in that snowstorm, craning our necks and straining our ears to hear that noise that we know is there somewhere, until we wind up wandering outside and becoming the noise ourselves.

This must be what peace is like. Inner peace, outer peace, whatever. Just being able to sit somewhere, music in your ears, a task at your fingertips, and silence in your brain. I tried to hold on to that feeling, that quietness for as long as possible. Eventually, the power always comes back on and the traffic starts back up again and my brain is no different. When the lights come back on, we miss that feeling of absolute silence, deep down in our soul, even as we rejoice at having light and cold food in the fridge again. I’m happy that my brain spun back up into problem-solving mode, but I long to have that silence again. That contentment. That simplicity.

And then, he died…

Okay, so I’m still alive, but it’s just like me to drop a “hey guys, I might have early-onset Alzheimer’s” and then disappear for almost a month and a half. I was actually a little worried about my brainmeat there, because I saw my last post was August 28th and thought “I posted seven days ago? I thought it was a lot longer than that!”

My brainmeat has been a little iffy the more I pay attention to it. Kind of like when you notice something hurts a little, so you hyperfocus on the pain until it feels like you need surgery. Or a splint. Or something. My most recent word replacement was that holiday in March known throughout the world as Leprechaun Day. Granted, that’s not quite the same stretch as “fish museum,” but I’m rolling with it.

I’ve realized a few times lately at work that there are things I’ve done project-wise that I just have no memory of. We had an issue with on of the alarm zones and the keypads still had old maps next to them, not new maps representing our new alarm people. The shop guy comes to me about it and I’m trying to figure out why he’s bugging me. Oh, right. Because I was the one creating the new maps back in February. After some random searching along the lines of “If I were me, where would I put the file?” I found my last edit of the map which was a little lacking in information. It was enough to be left alone for a bit, so I used the time to start digging through my desk drawers to see if I had any sort of notes. I found a few printouts with modest amounts of info and figured this was what I was given.

A few minutes later, the head boss comes upstairs with his manila folder. “Here’s all of the things you sent me last time” he says, as he shows me the same printouts I was holding in my hand. Ah. So apparently I made these documents. Wondrous.

Similar thing occurred when I was reminded that I needed to set up the safety meeting for this quarter, since I’m the new head of the Safety Committee. The previous guy ran the last one, so this one is up to me. Previous guy wanted to sit with me to discuss what I had come up with as a topic for the meeting. Ummm… I was thinking the topic would be… safety?

I vaguely felt like I might have taken notes last time, so I looked around for those in the five or six half-used spirals I have around my desk. Here it is: “Have meetings on Wednesday. Next one: October,” Thank you, Past Brian. Now I totally know how to run this meeting.

Part of me was a little worried about these gaps in my memory. They kind of vaguely came into focus as I researched them, but they weren’t there before I did. Then I realized that a lot of that could just be not really caring about the job. I hear people talking about some of the things we do and rattling off product numbers and stuff, and I’m just amazed that anyone could have enough interest to learn any of it. So I think I’ve basically given my brain a free pass to delete whatever it wants in regards to the job. Lovely.

In the meantime, I’ve decided to try bowling. It turns out, I’m quite bad at it. Like get-a-strike-and-follow-with-four-gutter-balls bad. Little flashes where it seems like I know what I’m doing, followed by long stretches of “you know the object is to knock the pins down, right?” But today I played games 18, 19, & 20 with scores of 114, 81, and 79 respectively. In a way, I’m happy to just see a trend there. My average right now over those 20 game is a whopping 85. And that’s with three games over the 110 mark. Oof.

I’m being good-humored and patient about it, though. The only other time I ever bowled was in ’93 or ’94, and even then I only played a few games with friends. So I’m saying these 20 are my very first 20 at this point. One day I’ll learn how to be at least slightly consistent.

Then it’s all over for you bitches.

A Trip to the Fish Museum

Okay, let’s talk about the new and spectacular health issues I’m dealing with. Namely, my brain.

Alzheimer’s disease is something that primarily affects people over the age of 65. They’re still trying to figure out what causes it and what can stop it, but there are a few risk factors, including a history of head injuries, clinical depression, and high blood pressure. Well, at least my blood pressure is normal. While there’s a genetic marker (APOE) that points toward a risk factor, it seems to be more of a “greater likelihood than normal” marker rather than a “you have it and you’re screwed” marker.

It’s estimated that 5-10% of Alzheimer’s cases are of the Early Onset variety, with about 60% of those actually inherited genetically, and those cases are known as Early Onset Familial Alzheimer’s disease. The accepted age limit for Early Onset is “before 65,” though most are in their 50s or early 60s while some have been diagnosed as early as in their 30s. I know about this not only from Wikipedia, but also because my father was diagnosed at the age of 57. My father’s father was also diagnosed with it, though I don’t know how old he was at the time.

While there was always a worry in the back of my brain, I recently turned 51 and that worry has evolved into a frantic screaming voice in my head. You know how sometimes you’ll misplace your keys and you’ll think “Oops, must not have been paying attention?” My brain says “THIS IS IT! IT’S STARTING NOW! FUCKFUCKFUCKFUCKFUCK!”

It’s a slightly stressful way to live.

When my dad was diagnosed, there weren’t any ways to test for EOFAD or any type of Alzheimer’s, other than conversations with doctors and memory testing. You’d think that would help, but here’s the problem with that: how do you convince a doctor that having a memory function that’s better than the average population is still worse memory function than you used to have? My dad was very smart and had a sharp and thorough memory. He could tell something was going wrong, we could tell something was going wrong, the doctors could tell he was getting older. Because that’s what happens when you get older – you forget things. Too bad patients, that’s just how life works. It took us a few years before a doctor would finally diagnose him with Early Onset. Again, he was 57 at diagnosis after a few years of symptoms. I’m 51.


Recently, I was reading an article about genetic testing and the various flavors of Alzheimer’s. It stated that for regular Alzheimer’s, they still just had the one gene that would suggest a propensity for something like Alzheimer’s happening. Basically, about as helpful as asking a rando on the street about your future. For EOFAD though, they’ve identified three genes where if you have them, you will get EOFAD. Full stop. When I read that, I burst into tears. Right there, sitting at my desk at work, bursting into tears. Awkwaaaard.

My wife had to get some genetic testing done for a familial thing, so she recommended her doctor. I reached out to him, found out I needed a referral, reached out to my doc, got the referral, called the genetics lab, got asked infuriating questions that showed they had no idea what I wanted or why, waited for a call back, called them back and was asked all the same questions that showed whoever I talked to previously didn’t write anything down, then finally got an appointment: the first of December. Better than the “we’re scheduling into next summer” I was originally told, but still. It’s a long wait for a telehealth appointment to talk about my issues, then who knows what will happen from that point. I’ve seen in a couple of places that two of those three genetic markers are only tested for by people who are doing clinical trials. We’ll see what we get in December, I guess.

In the meantime, I’ve been noticing other things. I’ve been trying to avoid looking at all of those “early signs” articles, because like a lot of things, everyone has at least some of the things on the list. The difference is the degree to which those things interfere in your life. It’s like the people who say they’re OCD because sometimes they keep their desk tidy. You know the type. “I’m SO OCD! Every time I take a drink from a bottle, I just HAVE to take the lid off! SO OCD!” But true OCD gets in the way of just about everything you’re trying to do. That’s what makes it a disorder. I hear that with ADHD too. “Last night I just kept switching through the channels. I’m SO ADHD!” No, you’re not. You’re just bored. While there are good and sometimes great things granted to me with my ADHD, it gets in the way of my life a lot. A lot a lot.

Anyway, I know one of the things is issues with words and language. Sometimes not being able to come up with the word, which I think I’ve mentioned here before. You know the word is there, you can describe the word, feel the word, taste it in your mouth, but it just won’t come. Sometimes it’s coming up with different words that are anywhere from partially to completely nonsensical. I’ve noticed it in my writing (well, typing) in the past, but usually I don’t consciously see it happen and usually it’s a nonsense kind of substitution that someone will ask me about when they read it.

Last week, I had a different kind. We were watching “Moving Art” on Netflix. Well, semi-watching. It’s great background sounds. I had tuned in to what was on the screen, because the episode was in Tahiti and there were underwater segments with all kinds of bright. colorful fish. At one point, I thought about how I’d like to go stare at some of these in person for awhile. Not snorkel or scuba-dive. Hell no. Just watch them from the other side of a big glass wall. My specific thoughts: “I know there’s the place in Mystic, but that’s pretty far away. I wonder if there are any closer fish museums.”

The thought ended there, because it didn’t feel quite right. Not like you’re eating something and you bite down on a cilantro stem or piece of bone, but like you’ve been eating something that’s soft and you find a non-soft bit.

I rolled “fish museums” around in my head for a bit, knowing it wasn’t quite right but not why. Finally “aquarium” popped into my head and while I was relieved that I had puzzled out the proper word, I was also a little sad that the proper word was so boring. I guess I should take some solace in the realization that possibly the creative portion of my brain will be the last to go, or will at least put up a hell of a fight.

So here I am, back to typing on the internet again, just waiting to see if I start typing gibberish. If you see something odd, feel free to let me know. Well, not just yet, because I’m still in “hating web programming mode” and haven’t bothered to look at bringing the commenting system back online. But again, at this point I figure you know me, so you probably know other ways to reach me. How convenient. I’m trying to keep these short (and look how well I’m doing!), so I’ll talk about the actual forgetting stuff in the next post.