health – Planet of the Blind

One year ago today I had myself a heart attack. To be honest I actually had the symptoms of heart failure over a period of about ten days. I honestly believed that I’d pulled a muscle in my sternum while lifting a carry on bag into an overhead compartment when boarding a plane. I made the classic mistake of googling my symptoms. A pulled sternum muscle can, said AI, cause shortness of breath and pain in the center of your chest. Put ice on it, or heat. Take Advil. Etc. I flew from upstate New York to Iowa City to visit a friend who’s been unwell. We walked around the town. We strolled beside the Iowa River. We’d walk a few feet and then I’d have to sit down. I explained my muscle pull. I had no idea I was having a full blown heart attack. When I returned home to Syracuse, New York I again had trouble walking across campus. I asked a friend if she could carry my brief case. It was that muscle thing. I went one more day believing I had simple strain. And then, on Good Friday it came over me, I was having a heart failure. The thing that put me over the top was that I had the compulsion to lie down. And a little voice in my head said, “you’re not going to get up, this is a serious moment.”

My wife Connie drove me to the emergency room. There are multiple hospitals in Syracuse. I chose the closest, “Upstate” a teaching hospital associated with the State University of New York. It didn’t take them long to confirm that I was having serious heart trouble.

My father died on Easter Sunday from a sudden heart attack. Here it was, Good Friday. Would I also die on Easter? I wanted to call Carl Jung on the phone. I wanted someone to tell me about magic numbers and fate.

I won’t go on about the triple bypass surgery, which is physically devastating. It’s taken me a year to feel like myself again. Today on my anniversary I’m almost me. Sometimes when I move my upper body I can feel the wires holding my chest together—there’s a little shift inside me like a transmission that catches when accelerating. This is normal. Its not painful, just weird. And of course while I say I feel like me again I’m not the same me. My rebuilt chest is misshapen. The long incision scar remains tender. I’m told that’s likely permanent. And I take a veritable armada of pills. Blood thinners, blood pressure pills, a daily statin bomb, vitamins, a baby aspirin. And there’s another pill which I don’t remember and can’t say what it does but its small and always drops to the floor and being blind I have to get down on my hands and knees and grope for it lest a dog come along and eat it.

My surgeon, the man who saved me, is a refugee from Iran. He came here as a young man. He’s arguably one of the finest heart surgeons in Syracuse. On the night before my operation we talked about Persian poetry. I felt lucky, even under tremendous stress. I felt cared for.

One of my resolutions is to never overlook the happiness of others. At its core this is pure democracy as Jefferson knew it. You have the right to pursue happiness and my job is to help you find it. I really mean this. I’m currently raising funds in order to publish first rate books of poems by disabled poets. I’ve published six books in this series https://www.ninemile.org/propeland will be releasing two more this summer. In these dark times we each have a job. And because I’ve received a second chance at life I like to imagine I know what to do.

I grew up on a steep divide but it wasn’t geographical. Instead it was a ridge or a chain of mountains both inside and outside me. I didn’t wish to be blind. I wanted to play baseball. And perhaps, more significantly, I wanted to be a scientist. Neither baseball or physics would happen for me. I became a poet. Compared to physics I think poetry is easy. All you have to do is step barefoot on a worm like Theodore Roethke, and you’ve got a poem. Poems fall out of cupboards like a box of starch loaded with spiders.

A popular phrase in advocacy circles is “embrace your disability”—but I’ve always thought the “d” word too mountainous for a hug. No one who’s disabled experiences a singular thing—a kewpie doll of physical difference that can be clutched to the chest. No. You can’t embrace your disability because, in fact, it’s a chain of mountains—highly articulated peaks with physical and metaphorical obstacles. I can’t stand it when I hear someone say “embrace disability”—one might as well embrace the Grand Tetons.

But I have another reason for hating the phrase “embrace disability”—one thinks of how difficult “embraces” really are for the disabled whose hopes for love and sexual life are often next to impossible.

Do you embrace your human loneliness and the near impossibility of intimacy with others?
Do you embrace your unemployment? The erosion of rehabilitation and health services?
Or the fact that doctor’s offices in the US are largely inaccessible?
Or that colleges and universities are woefully trapped in a 1970’s model of disability services?
Or that public transportation, especially airlines, treat you like a cockroach?

So I don’t like the word “embrace” which is just plain tomfoolery. And I don’t like “accept” because it’s too passive and vaguely defeatist.

Exult. Rejoice. Be rapturous. These are all too American. Don’t worry. Be Happy.

It just isn’t easy. The emotional rain isn’t gentle.

Once upon a time in Ithaca, New York, I encountered a man, a rather disheveled and clattering old man, someone the locals seemed to know, for we were in a diner, and he was going from table to table chattering with breakfasters, not asking for money, but essentially playing the role of the Id, sassing people, perhaps in ways they required, who could say, but there he was, pressing into each person’s space, piercing the psyches of strangers with his needle. He called a cop “Porky” and an elderly woman “Grandma” as he lurched steadily toward me. “Oh Doggy!” he said. “Doggy doggy doggy!”

Then he said, “What kind of fucking person are you?”
I tried my best Robert deNiro impression: “Are you talking to ME?”
He was not amused.
“A prisoner!” he shouted, for the whole diner was his stage. “This dog’s a prisoner!”

For a moment I felt the rising heat of embarrassment and rejection. Then, as he repeated my dog was a slave, I softened. In a moment of probable combat I stepped far back inside myself, not because I had to, but how to say it? Corky was unruffled. She actually nuzzled my leg. The nuzzle went up my torso, passed through my neck, went straight for the amygdala.

I smiled then. I said, “You’re right. And I’m a prisoner too.”

I don’t know if it was my smile, or my agreement that did the trick, but he backed up, turned, and walked out the door. Strangers applauded.

I’d beaten a lifetime of bad habits. I hadn’t fallen into panic, or rage, or felt a demand to flee.

I sat at the counter, tucked guide dog Corky safely out of the way of walking customers, and ordered some eggs. I daydreamed over coffee.

When I was eleven years old I fell onto a pricker bush. It’s hard to say how I did it, but I was impaled on hundreds of thorns. My sister who was six at the time, and my cousin Jim who was maybe nine, fell to the ground laughing as if they might die. I begged them for help which of course only made them laugh all the harder. I remember tears welling in my eyes and their insensible joy. I also knew in that moment they were right to laugh—that I was the older kid, was a bit bossy, disability be damned. I was the one who told my sister and cousin what to do. Now I was getting mine. My just deserts. In the end I tore myself from the monster shrub and stormed into the house. I sulked while they continued laughing outside.

Perhaps I thought, there in the diner, I could live henceforth in a new and more flexible way.

“Is it as simple as this?” I thought. “One simply decides to breathe differently.”

I saw, in a way, it was that simple.

Saw also how a dog can be your teacher. And while eating wheat toast I thought of the Buddha’s words from the Dhammapada:

Live in Joy, In love,
Even among those who hate.
Live in joy, In health,
Even among the afflicted.
Live in joy, In peace,
Even among the troubled.
Look within. Be still.
Free from fear and attachment,
Know the sweet joy of living in the way.

But you see, that’s the poet in me. It’s easy to imagine disabled life is a matter of grace.
And though I have these moments, I know I’m high in the Grand Tetons, still looking for a path.

And so I’m getting to my point. We are in the fight of our lives, all of us who hail from historically marginalized. This is a fearful time. I want to fight for us all. Embrace or don’t embrace your disability Stephen. Its all the same our there where so many are prisoners. Be better. Think a little bit about John Lewis. Think of good trouble. Right now the emotional rain is toxic. Get your umbrellas.