family – Planet of the Blind

Of Gratitude, a Heart Attack, and Poetry

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.

Each morning I gather mosses…

Each morning I gather mosses, even in January, even when bending to customary tasks. Washing dishes, I touch the moist earth. It’s a game I play to keep alive.

Generally, I think human beings would be better creatures if they talked with their feet.

Go on. Push the child you once were into the deep end. The kid will do fine.

A memory: just before heart surgery (mine), one of the hospital interns who spoke no English tried talking to me using a translation app on his iPhone. But I couldn’t read it. I was thinking about the probability of death. And we couldn’t talk.

Now give me that damn candy and leave me alone!

Trying to live well and grieving all the time. You’re one of them, those others.

You know all those “top ten” lists. Here’s a new one—top ten dream clots:

Talking to a dead mother on the phone while a dead father stands over your shoulder and tells you what to say…
Buying strange bread in a foreign land with your hands tied behind your back and a gag in your mouth…
Old acquaintances gathered in a gentle place, a room with soft lighting, and all the old wounds and wrongs have been forgiven. Trouble is, we were in a funeral home. And one of us, probably me, had tracked dog shit all over the fancy carpets.
You’re pretending to see as you did during childhood. You’re in the softball game. Nothing you do will lead to a good outcome. But you want so desperately to fit in.
A train and you’re on it. Perfect. And your uncle who was sinister in life is next to you talking about vodka.
Dreaming
Of the little girl
Who was beside me
In the infant hospital
All those years ago
Blind children
Side by side
Her singing
Savage laughter
You see yourself in mirrors
Them ovoid ass bad pants
A mannequin’s poor dream
Mozart

Improbable yes but I dreamt of him
And though we were in a room
Rain fell and it was beautiful
Water coursing down the walls

“We only get so much”
He said—“opera is for the young”
“String quartets, for dying”
He was there alright

I tend to not have nightmares. My dreams are odd though. They tend to be like Elizabeth Bishop’s poem about waiting for the dentist.

I recognized they weren’t living men
There was a blind man there, not me,
And he had a dog, not mine
In the cafe
With red curtains
My twin brother
Who died at birth…

"Reasonable People": On Poetry and the Politics of Breathing

Book Review:
by Stephen Kuusisto

Reasonable People: a Memoir of Autism & Adoption
By Ralph James Savarese
The Other Press

“My name is DJ and I am taking a trip of a lifetime.”

The line above appears in the journal of DJ Savarese who is the co-author of the memoir Reasonable People which has just been published by The Other Press. The sub-title of the book is as important to culture as the title itself: “On the meaning of family and the politics of neurological difference”. This timely book is about the Horatian life, “Life” written with a capital “L”. Accordingly it is about family and the life of the mind; about poetry and the fierce resistance to stereotypes of people with autism.

Assuredly one can think of dozens of additional sub-titles for the book: Living Outside their Boxes; Unraveling the Outworn Tapestry of Academic Autism; A Prayer Wheel by Two Poets; or The Road of Salt and Honey.

This is a memoir about “hard traveling” as Woody Guthrie would say, and yet it is far more than a narrative of trouble and triumph. The poet, Ralph James Savarese, skillfully tells the story of his adoptive son DJ’s former life of physical and intellectual abuse and in turn and almost seamlessly tells the story of how he and his wife Emily must grow both intellectually and emotionally and yes, politically, since DJ’s autism is the kind of disability our culture has misunderstood throughout history.

Continue reading “"Reasonable People": On Poetry and the Politics of Breathing”