Monday, June 17, 2024

A long, long time ago, I can still remember how that music used to make me smile

Throughout the eighteen (!!) years that I've been writing this blog - or lately, not writing it - my goal has always been to write the way I want to write, and write well, and write truthfully, and not censor myself. I certainly will respect peoples' privacy and confidences. I've changed names where necessary or altered the details of a story in a way that doesn't make it recognizable while still maintaining the essence of the story, but I always bristled at letting someone else dictate what I write. 

But over the past couple of years, it's been increasingly difficult.

My children are in their mid-teens. They are entitled to their privacy. They would be horrified and furious if I wrote about the details of their lives, or my experiences as a full-time single mother over the last few years, or the specifics of why it has been so, so difficult and draining and anxiety-producing. 

Enough people who read this blog know me pretty well, so there's no way to write about the kids without airing their dirty laundry in a conspicuous way.  

So I haven't.

I'm also in a relationship with someone who, except for LinkedIn, makes a point of having a minimal  online presence. He's not on Facebook or Instagram or any other platform. He's very private.

To my own credit, I have made a point of providing almost no identifying information about him. I have only ever used his first name, which I could go back through the blog and change to an alias. The Dude, perhaps. 

In any event, I have never provided any detail about what he does for a living or anything else that would allow someone to figure out who he is. You know that he likes to ski and hike and bike and see shows at Red Rocks and travel, but that could describe the majority of men in the state of Colorado. 

Still. I'm very careful to the point that I don't write nearly as much as I would if this were an anonymous blog. 

I also work for a public school district with an active and vocal parent community, some of whom have an eye on me and regularly curse my name on private Facebook groups because they think I'm a terrible person whose overriding goal is to make life awful for their children. 

Spoiler alert: hurting kids with disabilities is the opposite of why I'm excited to go to work every day.

The result has been that the things that have shaped my life over the past few years are the same things that I can't write about very much. 

So for the past 8 months, I haven't written at all. 

I've lost my time machine. 

I know I've talked about this before, but I can't emphasize enough how important memory is to me. Some people don't look back fondly on the past. There's a person I went to school with in India who has basically erased any mention or memory of our India life as much as possible, because she had bad experiences and hates thinking about it. 

But I've had the extraordinary good fortune of living a life that for the most part, has brought me great joy. That I love looking back on. It's why I love reunions. It's why when we go to our parents' house, my brothers and I always make a point of looking back through old photo albums (of which there are at least 20). It's why I make photo book after every trip I take. 

I hate it when I can't remember details. 

When people say, "don't you remember the crazy bus ride to Rishikesh when we went white-water rafting at the beginning of senior year? It was terrifying." 

And I don't remember that detail, and the not remembering upsets me.

I bring all of this up because my dad was diagnosed with Alzheimer's disease.

Fortunately, he is still highly functional. His short-term memory is pretty much nonexistent, and he repeats himself constantly, but he knows his life. He can still drive to familiar places, like McLean Family Restaurant to have breakfast in the morning, or to the gym. He walks the dog and reads books.  

He knows who he is and where he is and when he is. He knows who we are. And his love for us is boundless. 

He's never been much of a phone talker. He's always been loving and affectionate, but conversations consisted of, "how's everything? Are you ok? How are the kids? How's your car? Do you need money? Ok, here's your mother."

Not much has changed, except the statements are more overtly love-y.

"Hi sweetie. How are you? How are the kids? I just want you to know how much I love you. I love all my children. And I love my grandchildren. And I have the best wife. I'm so lucky. I've had a great life. Ok, here's your mother."

He has doted on me from the day I was born. 

He repeats that over and over. But those are repetitions that I don't mind at all. 

I'm thankful that he hasn't shied away from the diagnosis. He's not in denial. He's been proactive about seeking medical care, and recently started participating in a clinical trial for a drug that may help to slow the progression of the disease. 

I have a number of friends whose parents are also dealing with Alzheimers, or whose parents had it before they died. Some of them absolutely refuse to acknowledge it or talk about it. They won't go to a doctor. They are in complete denial. 

Not Barry.

He understands that in all likelihood, the disease is going to kill him. He has said, in so many words, "if this is what takes me out, I have no regrets. I wouldn't do anything differently. I've lived a life of adventure, had the best kids, the best wife. All of it. It's ok." 

We know what's ahead. We know that he will start forgetting more than just what he had for breakfast, or where he left his keys. 

Throughout my life, he has been such a force of nature. So funny, so smart, so crazy, so cool. 

Check out this cool mofo. "Effete Snob for Peace." Heh.

But he is noticably slowing down. He seems frail. It breaks my heart. 

It breaks my heart for my him, and selfishly, it also breaks my heart to think it will probably happen to me. 

So I am determined to continue making a record of my life, for myself and my family and my children.

I read back over this blog and it brings memories to the forefront. They stay in my brain rather than fade away. It means that my sense of myself is more comprehensive. I want to keep that going as long as possible. 

Which is why I need to start writing again. On a going-forward basis, and also to try to backfill events from the last 8 months. 

And that's where I am. 



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