Hope

One of the things about being a kid in a tough situation, a gritty, adult, children-shouldn’t-have-to-experience this situation, is that people, i.e. adults, don’t tell them things.

It’s not ill-intentioned. They’re trying to protect them. The thing is, you can’t. Kids are young, not blind. They’re perfectly capable of noticing things going around them, and will, without being let in on what’s up, form their own (often convoluted) explanation for things.

One of the many mostly undiscussed things that mystified me as a kid was the issue of whether any one thought my brother was likely to ever come out of the “bubble” room. My parents, if it came up, just alluded to “when he got out.” My brother didn’t talk to me much about it.

Once, when he was about 15, I remember suggesting to him that he do the written part of the driver’s test, so that he’d be ready to take the driving part when he got out. He only grunted back at me. He was also doing push-ups at the time, so…shrug? I think that may have been the extent of our conversation on the subject. Then again, while we were close, I was still his younger sister, aka possibly the last one he’d confide in.

That left me squarely in the realm of reading the vibe around me. I became eerily good at reading non-verbal communication as a kid, and I’m still good at it as an adult, as a result. But in this case, I never really figured it out.

When I researched his disease, aplastic anemia, in the course of writing my first book, The Empty Room, I realized there was almost no chance he’d get out.

The odds of surviving that disease, back then, were grim. There were no treatments. Survival depended largely on not dying of an infection and the bone marrow deciding to kick into gear again and start making blood cells. This, I believe, usually happened within six months of diagnosis, if it was to happen at all.

My brother was in that room for more than eight years.

Based on this, as an adult reflecting back, I assumed my parents were basically avoiding stating the truth when they talked about “when he got out.” And that my brother, who was no fool, knew all along.

But recently, I went up to visit my parents, and I asked them whether they thought my brother thought he’d get out.

I honestly expected them to say no. To my surprise, though, they said yes. Not only did they say yes, they said it in unison, and emphatically. They did not, however, provide any explanation for why they thought that.

It honestly took me aback.

I did my first interview last week. It was with one of my brother’s best friends, Charlie Levy (more about him in another post). Charlie met Ted through their mutual friend David, who Ted had known since second grade. They bonded, initially, over the fact that they all played guitar and used to jam together. But he’d quickly become one of the extended family who populated the non-sterile half of Ted’s room during visiting hours.

I asked him if he thought Ted thought he would get out. Again, I was surprised. Emphatic yes.

“He once told me ‘The day that I get out we are going to have a monster jam. Everyone who plays guitar is going to be invited,’” Charlie said. “He really did think he was getting out. He named everybody. He’d never played with a lot of them but he knew of them. He was like ‘this guy is going to be there, and this one, and your guitar teacher’….I thought, If anybody has the brass balls to beat this and crush it and win, it’s Ted. He had every intention of getting out, getting to a great life, having a monster jam, being a professional musician, or going to college….”

This conversation brought two things to mind. One, my mother always kept this piece of Emily Dickinson’s poem, “Hope is the Thing With Feathers,” pinned to her bulletin board:

Hope is the thing with feathers

That perches in the soul,

And sings the tune without the words,

And never stops at all

The other was something my dad, who is an oncologist, told me much later, when we were working on The Death of Cancer, the book we co-wrote about his career. He said that patients always ask how long they have, and that he never answers. Not because he’s being cagey, but because you truly don’t know, and there are so many factors, including the human spirit, at play. When you tell someone a time limit, he said, you take their hope away from them.

He told me about patients who shouldn’t have survived long at all, but, against all medical odds, did, and others who were doing better, in one case in remission, even, but did not believe it, and basically wasted away and died.

Was it lack of hope? Lack of belief? Surely hope can’t keep you alive, or there’d be a lot more people surviving bad diseases.

But….what role does it play?

Hope didn’t keep my brother alive. But I think that maybe it contributed to keeping him sane, and positive, and alive in every other sense of the word, while he endured circumstances most of us can’t imagine…even during a pandemic.

It’s something to think about.