Category: Disability Perspectives

1.

I arrived at the intensive care unit in the early afternoon.

I was shocked to find my mother rising and falling atop a motorized bed with no nurse in sight.

2.

My mother, who resembled Elizabeth Taylor, even as they both aged and who was now unconscious, or partially conscious; terrified, or without a claim to dignity—with her tracheotomy, her heart monitor, I.V. drips, with a macerated open chest cavity, my mother was being tortured to death in the Portsmouth, New Hampshire hospital on an ordinary day in September. Outside you could see the beginning of autumn foliage.

3.

What to do? Stay calm of course. Despite the bungled surgery and the failures of post-operative care you need the nurses on your side. Everybody who has ever been in a hospital knows you need the nurses on your side. Don’t yell at the nurses. Don’t spit in the soup.

4.

"Excuse me, excuse me, sorry, sorry, but you see I’m blind so I can’t make eye contact and I could hear you over there—yes, hello. Yes, is my mother’s bed supposed to be rising and falling since as I understand it she has an open chest cavity?"

5.

Stray, affiliated questions asked over a 24 hour period:

"Why can’t you sew up her chest cavity?"

"Why can’t you find a chalk board so she can communicate?"

"Why did they perform the heart valve surgery if her sternem was too fragile to close?"

6.

Because I travel with a guide dog I discover things. Even the oldest hospital apparatchiks like to see a Labrador wearing its professional harness.

Discoveries:

My mother’s surgeon is called "the Italian Stallion".

He was once the doctor of a famous TV personality but he left New York and fame and glory for rural New Hampshire.

Since he couldn’t sew my mother up, the stallion put a staple in my mother’s chest but it wouldn’t stay in.

They’ve placed a sort of weighted pillow contraption over her breasts.

7.

Autobiography ain’t the movies. When a loved one dies there is only paper work and seemingly endless journeys to the Salvation Army. We gave away my mother’s favorite clothes. We bundled up the bed sheets and threw them away as if we were Victorian charwomen. What the hell else do you do with the landlord breathing down your neck. They wanted to show her apartment before she was in the ground.

8.

The funeral director handed me a black plastic garbage bag as we stood in the cemetery. "I forgot to give you this," he said, "It’s her teddy bear and her bathrobe. You know, left over from the hospital."

I can’t believe that he’s handed me a garbage bag with a teddy bear inside He might as well have handed me a bundle of shorn human hair and a sewing machine.

9.

My mother’s death was so ghastly it’s taken me 8 years to confront the business. She was an old woman. She had congestive heart failure. She was diabetic. Her body was malnourished owing to years of alcohol abuse. She was a high risk patient for heart surgery. Then the Italian Stallion discovered while leaning above the operating table that he couldn’t sew her chest back together.

10.

And so she slowly bled to death while rising and falling atop an electrical bed.

11.

Homer’s Odyssey, Book Eleven, tells of the journey of Odysseus to the underworld. The man requires words from the dead. Everyone knows that if you want to get home you need the dead on your side. D.H. Lawrence said the dead stay around and help. Or something like that. The Greeks were less certain. Ancestors were no more trustworthy than the gods Odysseus leaned into the smoky underworld and put a bowl of blood on the ground. Soon the shades of the dead came forward and Odysseus saw his mother. She was unloved, grieving, bloodless, thirsty, kept from the world of solid form by the two dimensional forces of Hades. The Swedish poet Gunar Ekelof wrote that everything in Hades is flat. The dead navigate there like sting rays.

12.

Is memory real? Yes and no. Longitudinal studies in "memory theory" report that human beings "see" specific incidents poorly; they remember experiences incorrectly; and after time has elapsed they are convinced of their misapprehensions about the past.

Freud saw that we do not remember the past; we re-arrange it in symbolic figuration. In other words we are at every moment re-inventing the personal pastand we are doing so with the signs and symbols that we have absorbed along the road of life.

Just as there is no "true green" in nature there is no "true memory" stored in the human individual.

13.

I used to believe this. Until I found my mother dazed and bleeding, rising and falling in a malfunctioning bed that was designed to prevent bedsores. Her mattress heaved her wounded torso up, then with a merciless sequence of chirps and a grinding of gears it would drop her back down, leaving her flat for twenty seconds, flat with her leaded cushion over her chest,her eyes wide open, her throat blocked with a tube.

14.

"No, no," said the nurse. "That bed isn’t supposed to do that!"

"Well how long has it been doing this?" I asked.

"I don’t know," she said and then quite literally ran away.

15.

A bowl of blood.

Shadows of early morning.

Good bye

Good bye

A Roman carnival spins at the top of the narrow street.

It’s spring and they are honoring the dead.

Look.

S.K.

The kid next door was trying to put together a tent. He had a couple of buddies with him. He was waving the instructions around and reciting the directions: "Insert part "Q" into part w etc." I was standing in my own backyard with my very old Labrador retriever "Roscoe" who was for his own part reading the instructions from the grass.

The kid with the assembly list suddenly said: "That’s why I was never a Boy Scout!"

"Thank you," I said, softly, smiling with a bouquet of rue in mind. "That’s why I was never a Boy Scout, indeed."

I was never a Boy Scout; and never destined to be a railroad engineer or a shortstop…

Still, back in 1962 I begged my mother to let me join the Cub Scouts.

My mother knew that owing to my blindness I was going to have an uphill struggle and accordingly she also joined the Cub Scouts as a "Den Mother". She probably figured that in this way she could foster activities that I might be able to do. She also knew that I had already been the target of bullies who had taken it upon themselves to hurl insults at me because I couldn’t see. I think she imagined she could control the drama if she was the designated mother of us all.

We made our own popsicles with Dixie cups and we dunked for apples. We made "wampum" belts with Indian beads. We sang songs about bears. We played harmonicas. We wore little blue uniforms and we went to assemblies where we received cloth badges that our mothers would sew onto our shirts.

In short: it was terrible.

Pretty soon we were begging my mother to just let us go out into the woods.

My mother had run out of activities that I could do and she was tired of us all. She gave us her blessing. And we were gone.

We ruined our uniforms by crawling through the trees and climbing rocks. We threw pine cones and pretended they were hand grenades and we were deep inside Nazi territory.

When the other mothers came to pick up their sons they saw one boy who was missing a shirt sleeve. Another had lost his epaulets. Several had torn pants. One kid was minus a shoe. We were covered in pine pitch and dirt. We were sweaty and we stank. We were ecstatic. We were still shooting each other with sticks.

Of course those were expensive uniforms and in those days you had to order them from the Sears and Roebuck catalogue and it took several weeks to assemble the whole getup and we had managed to lose our kerchiefs and the little gold rings shaped like wolves that held the kerchiefs in place and one of us had thrown away his expensive belt by pretending it was a flame thrower and not one of us still had his little hat—we had collectively burned a huge assortment of our expensive military regalia.

That was the end of Cub scouts. My mother was summarily dismissed. But I was for one brief dazzling moment on the frontline of boyhood without bullies or tedious rules.

Thanks Mom!

S.K.