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June 2023: Update

Not really much to say this month. So, another journal entry.


June 2023

 

This week my Facebook friend, Glenn, died from ALS. We have exchanged messages for the past year. He is the second person to die that I have had Facebook interactions with. Both guys decided not to get trached because it is expensive and incredibly taxing on those in your life. I respect Glenn’s decision to transition to whatever is next, but I am still sad, and I will miss our conversations.



And honestly, it is sobering because it serves as a reminder that ALS has one mission: destroy and kill.

 

In light of that, I say, bring it on, motherfucker. I was texting a friend this week, who has had ALS for 12 years, and told him in many ways, I can’t imagine my life without ALS. How is that even possible?

 

June has been a total shit show and has been full of awe and magic all at the same time. Kris and I are still working hard together to figure out our relationship. Without rehashing the whole thing, just read the previous entries. And it is fucking painful and beautiful and sacred and scary. And I must say, it is not easy to catch me off guard but the stuff with having to reinvent ourselves... Well, that caught me off guard. We recently started a new thing where she will lay on my chest and put my hand on her face. I find myself constantly waking up, and my brain tells my hand to rub her face or slide my hand down her body, and my fucking hands listen as well as Zoe Moon. And I lay there, thinking and wondering, how did we get here?

 

And yet there are other things that are pure magic. Like Father’s Day. I only saw 2/5 of my kids, and it was amazing as my 18 and 14-year-olds were couch surfing and cruising the streets of Los Angeles together, my 17-year-old was on a cruise with his girlfriend and her family, and my 16-year-old was supposed to be out of town for baseball but he phoned in sick and went to see the spider verse with me while Zoe Moon and Kristy went to see something else. I think what made me so happy was simply seeing everyone do what they love. I am not one of those that wishes we could go back to when they were small. I loved those days, and there are things I miss, but we have worked so hard to get them to this place, and I really enjoy seeing them learn how to use their wings. And sometimes their wings don’t work, and I am grateful to still be here to laugh at them and pick them up and encourage them to go again.

 

I don’t spend much time thinking on or wishing things were different. It is what it is. And I can live with that. But sometimes, mostly in the quiet of the night, I do find myself wishing it was a little different.

 

So, what are we to do when life doesn’t go our way? I guess we just keep going. We don’t really have too many other options. My goal and philosophy are, learn as much as I can and keep growing. And maybe along the way, help others whose lives didn’t meet their expectations. I really don’t have much to offer those whose lives are perfect or those who just sweep everything under the rug. But for those who want to face reality head-on… Well, I might have something for them.

 

Love.

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