Bubble

I had another Bubble-explainer experience last week.

Which is to say I had to explain my backstory to someone and the most shorthand way to do that was to reference “The Boy in the Plastic Bubble,” the 1976 movie that was based, in part, on my brother Ted’s story.

Then I guiltily explained, as I always do, that my family had not authorized the movie, that my brother hated being known in the press, and that it also wasn’t a very good movie. Also, that it made me forever kind of hate John Travolta, though I suppose it wasn’t really his fault.

Years ago, when I was just starting out in journalism, I was an editorial assistant at The Washington Post. There was a well-known sportswriter there who had a regular column and was well known to be a lazy AF reporter.

So lazy, in fact, that when he wanted an extra opinion to throw into his columns, he’d poke his head out of his glass walled office and shout a question across the newsroom to another reporter, named Martha. Her quote would then appear in his column attributed to “my smart friend Martha.”

All us underlings who witnessed this rolled our eyes. But secretly, I’ve been dying to steal his MO for years.

And I had the opportunity to do so after I wrote a first draft of this post, because my friend Maureen, heretofore to be known as my smart friend Maureen, texted me after I finished the first draft, read it for me, and rocketed back a bunch of questions.

She asked me if I referenced the movie to keep Ted’s memory alive. To which I think the answer is no. That Boy in the Plastic Bubble thing seems to have a life of its own, judging by the pop cultural references. Travolta’s wistful performance in no way recalls my brother.

I use it to quickly shorthand who I lost and how and avoid the feeling of repeating myself telling a story. Anyone who has a personal backstory like this knows how boring you can start feeling to yourself telling it.

The price of my sleight of hand is a little guilt with regard to my brother.

Here’s where my smart friend Maureen got very smart.

I started this blog project early on during the beginning of the pandemic to explore the idea of how my brother survived what the world was then living through, in terms of isolation and fear of infection, with his sanity intact and as an amazing, productive, creative individual.

But now that we’re all out again, not wearing masks for the most part, it doesn’t seem as relevant.

So, I’m not sure what I’m writing now and if I should continue. Or whether the angle of the blog needs to change. I’d really like to work on another book project, or podcast. I get bored when I’m not creating something. Bored and depressed. This is self-care. But it would be nice if it was circling a point.

I shared this with Maureen.

Maureen texted: Your life is in a state of so much uncertainty, so much is demanded of u. Your brother, ironically, didn’t have to do anything but show up and live. What happened to him was outside his control to a large degree, except what was asked of him. Which was monumental. And also simple in some ways.

I’ve noticed this in others, not necessarily myself. That the person with the illness, while they have the illness to contend with, have a more direct role in the story and a clear job. Survive. Get better. Those of us on the sidelines, not so much.

While no one would call my brother’s life in a sterile environment easy, it was interesting to register (again) how hard it was living in the undefined presumably fine space of the well sibling. (Spoiler alert: I was not fine.)

The other part of Elizabeth 101, which many in my inner circle are familiar with, and which I’ve written about, is that I’ve been shouldering a biblical level of family crises these past few years.

My recent biblical episodes have fallen more in the realm of caretaker roles (yes, plural). And, as in the sibling experience, I’m often presumed by many family, friends, and healthcare professionals to be fine or to have the easier route. I get complimented a lot on my strength. Which, depending on who it comes from, can be annoying. Because, as others who have been in this position know, it’s not like I have had much of a choice.

I could give you a spoiler on this one too, but you’ve probably already seen where I’m going with this. Okay, I’ll say it. Not fine.

Also, my brother had a crew show up every day, in the form of family and friends and nurses and doctors, to witness and support his effort. With a few exceptions, I’ve been doing this alone. “It’s like, where the f*ck are my people” she wrote.

It's mind boggling to me what we're expected to do in silence, under the cover of night,” wrote Maureen, who is no stranger to difficult times.

But the truth is, maybe looking at my brother as a guide for all of us, during the pandemic, was a red herring I dangled in front of myself until I could really see I was just writing about myself and my childhood yet again. Maybe Ted isn’t entirely the teacher here, or rather the only piece of that story to learn from. Maybe it goes back to me, surviving on the sidelines again.

It’s amazing to me that the answers always seem to come back to that backstory, in some way. Maybe from a different angle or lens. But always there. And the irony is, I’m bored with it. Go figure.

For now, I think it comes down to this, though I thought I had learned this lesson already, I’m still learning to be the center of my own story.