What’s it like to be dying?
Yes, it’s the feel good blog of the year!!!
No intention of being morbid. But, you know, we’re all dying, just at different speeds.
I’ve had this condition for about 2 years now, and until last week I thought I was going to beat it. My condition was stable, and if I could hold out another 2 or 3 years, they might find a cure, or some kind of fix, I reasoned.
So I went about my life, albeit a little handicapped, as many things I do require breathing. I was doing what I used to do in Junior High…being macho and not wearing a coat in the winter. Only in this case, I was walking as far as I could without my clunky oxygen box.
The box itself isn’t bad, but I hated walking around in public with that nose thing, where the air comes out. I think it’s called a cannoli, or a caligula, or something like that. I call it the ‘nose thing’.
To me, it was like wearing a scarlet letter, something that shouted out to the world ‘I’m really ill! Look away!’
But now I wear it, not only when I go somewhere, but even around the house. I still don’t like it, but it beats gasping for breath. Just barely.
I realized, once I got over feeling self-conscious about it, that people were nicer to me when they noticed it. They would hold doors for me, serve me quicker in stores, and look at me with pitiful expressions. I always wanted to be special!
I can’t be spontaneous anymore. I try to only take on things I can cancel last-minute. I lie down a lot. Not in bed, but on the couch. I walk around the house without my box most of the time, but lately I’ve been out of breath after walking a few feet. I have a non-portable oxygen thang next to the couch. I hardly ever used it the first 2 years…now I use it daily. It helps, but it also reminds me of my deteriorating condition. I’m a step away from being a bubble boy.
Many of my friends have been expressing concern, though I can also sense it makes some of them uncomfortable. I understand that. I would be that way too. I don’t like sickness, or sick people, or complaining people. I don’t like me these days.
I wish I could find a solution. I have so many things I want to do. I’d been planning to emerge, after the pandemic, with a dynamic set of projects that had been percolating for a couple of years. Of course, I did complete a few. My movie is being seen. I’m involved with a new band, who are performing many of my songs. I don’t have to perform, which is good, since I never liked it much, even when I was healthy. Behind the scenes is fine with me.
Liv (my wife, for those of you who don’t know…or maybe don’t care) has been wonderful. But she has a life, and I don’t like taking her away from it with my neediness. But it’s getting harder to make believe I’m ok.
That’s the weird thing about being in this position…you’re no longer living for yourself, you’re living for the people around you. Everyone I care about seems so concerned, but there’s really nothing anyone can do. I’m not comfortable dealing with expressions of concern. I don’t want to be that guy. I want to be dynamic, vital and creative. That’s how I feel…until I stand up.
I have no future. I’m not being dramatic…that’s the reality. I can’t think about a future. And yet, I may live another year or two, maybe more with a little luck. So what will I do with my time that doesn’t require completion?
Any project I want to do requires some type of completion. It’s not enough to write a song, or a play, or a movie. It doesn’t exist until it’s in a form which can be seen or heard. And that requires time, work and money. ‘Please watch my movie…I’m dying’ isn’t a great pitch. Although, if I thought it would work…
In fact, this blog is one of the few things I can do that reaches 137 people (well, actually, usually about 70% of subscribers actually read the blogs on a regular basis). But it doesn’t take too long to write, and if it flops, there’s always another chance in a week or so.
So, these are the kinds of things I am dealing with now. Some day you’ll be in the same situation, though I hope you don’t get an incurable disease. Maybe you’ll just fade away, like an old soldier. Or get hit by a truck, and get it over with quick.
Dying is not so sad, really. I did a lot of stuff in my time. I’m still doing a lot of stuff. I wrote a memoir a few years ago, called ‘Kid 69’. It was mainly about one year of my life, 1969. I suppose I could write another 69 books, except that the first one didn’t make much impact. There’s no call for a sequel. It does make you aware of the reality that what you do in your life matters mostly to yourself. Other people might like to hear your stories, but there’s not much interest in having vicarious experiences, unless you’re someone famous. People like to imagine what it’s like to be famous. Stories by non-famous people don’t matter, because there’s no happy ending. There’s no climax. It’s just a slice of life, and everyone has those. I wrote about 1969 because it was an important year in history. But most readers didn’t put the coming of age story of a kid from Brooklyn together with the coming of age of America. I guess that’s on me. After all, I’m the author.
don’t bother reading it… listen to the audio version on spotify and other audio book sites. if you prefer actually reading, i used a large font!
We’re all the authors of our lives. When you write your memoir, no one will care either. Unless you’re famous. There’s only one subscriber of my blog who is actually famous. I’d read his book, even though it probably wouldn’t be very introspective. We all love success stories, especially ones with some tragedy thrown in.
I don’t mean to bring you down, dear readers. It’s just hard for me to think about much else. Everyone’s got problems, but ideally they are potentially solvable. This one isn’t. This is Chinese water torture, drip, drip, drip. The reality is setting in. I’m on death row, but I didn’t kill anyone. I guess, if I wanted to kill someone, this would be a good opportunity to do so. What could they do to me? Unfortunately, I can’t think of anyone I want to kill. Yet.
People who don’t know about my situation still treat me with the normal indifference they always have. In a weird way, that’s comforting. It’s a slice of real life. I mean nothing. You mean nothing. We’re just passing through. All the stuff that seemed important for 70 years is instantly unimportant. I’ve done what I can to help people, to try to make it a better world. Nevertheless, half the people I’ve ever known are mad at me, mostly for unknown reasons. That used to bother me. Now I know I’ll never know why, and it doesn’t matter. That’s another thing about dying…it’s a big relief.
Next blog will be funny…I promise.
I’m very excited to be involved with The Sirens, a very talented group of singers and musicians whose songs are exceptional. At least I think so, but I wrote most of them, so there’s that. The group will begin performing this summer, and there’s already excitement building. They’re laser-focused (TM), and ready to rise like a Phoenix, or at least a Tucson. It’s much easier for me to talk up other people than myself (I know, I self-promote endlessly, but not happily). The ladies in the group are all very delightful people, as well as majorly talented. Here’s the first recordings of the band…I think you’ll enjoy them.
Almost everything I want to say comes out sounding hackneyed. I’m just so sorry. I love you.
This is certainly a devastating G&J.. of course, you still manage to slip in some characteristic touches of humor. That you find yourself in this situation seems especially wrong in your case. with your uber-energetic and ever-creative creative approach to life. And in Liv, you managed to connect with someone who shared that tendency, making you two kids the most dynamic duo since Bruce Wayne and Dick Grayson. Which brings me to the Siren tracks (segues are us.). Superb. Hang in there, s'il vous plait.