The following is a short adapted excerpt from Chapter 24 in a new memoir by Nadina LaSpina, Such a Pretty Girl: A Story of Struggle, Empowerment, and Disability Pride.
Chapter 24: “I promise we’ll have fun”
By Nadina LaSpina
The waiting room clock at NYU Hospital said ten after midnight. I spoke softly into my cell phone.
“They’ve finally taken Danny to the OR,” I told my friend Hope. I hated keeping her up late knowing she had to work the next day [unlike me, a college teacher off for the summer].
“I’m confident things will go smoothly.” Her voice was soothing but her words failed to reassure me.
“I’m scared, Hope.”
“I’m praying for Danny.”
I thanked her. “I’ll speak to you in the morning, unless something goes wrong.”
Hope was the one I called in a medical crisis, when I needed the advice of a nurse as well as the comfort of a friend. She’d be at my side if she could, but the years and her Cerebral Palsy had taken their toll. She needed every ounce of her energy to keep working full time.
I was grateful Hope was praying for Danny. A minister’s daughter, she knew about prayer. I wouldn’t have known what to say or even who to pray to.
I’d been sitting in my wheelchair for about 40 hours. Even if I could manage to lie down on a couch, my muscles were so contracted, stretching out would have made me hurt more. On a big flat screen, a slide show of nature scenes was flashing. I wheeled over to where the computer tables were lined up. But looking at a monitor made my head spin. My eyes couldn’t focus. I leaned my elbows on the table, rested my head on my hands. I had called 911, following Hope’s advice, because Danny was vomiting and his abdomen was distended. He had refused to eat dinner, itself cause for alarm, since he was such a good eater.
“I don’t think the colostomy is working,” he repeated.
He’d had a colostomy since ’98. The night of that surgery I sat in this waiting room—same clock but no tables with computers, no big flat screen then. Too many enemas administered by different attendants had caused Danny’s colon to become perforated. They had to operate to save his life, and that surgery lasted most of the night. I waited alone and afraid then too.
I had no relatives who were close enough to rush to be by my side. Neither did Danny. Though we had many friends, those I wanted with me at this moment—my disabled sisters or other members of my extended crip family—would have found it difficult to be here in the middle of the night.
So many times, I’d waited in this room. Whether the situation was life-threatening—his kidney had to be removed due to a terrible urinary tract infection—or simply dramatic—infected pressure sores, broken bones caused by his reckless power-wheelchair driving—sitting in this room always filled me with anxiety.
But I didn’t recall ever being quite as afraid. Now Danny was much more vulnerable. Since 1993 [when we fell in love organizing the first major disability pride event in NYC], his multiple sclerosis had progressed; I’d watched him lose more and more function. His breathing was now compromised and he used a ventilator. Was he strong enough to withstand major surgery?
The question was irrelevant. The contrast scan had revealed a major blockage. Once again, the surgery was necessary to save his life.
Danny had been brought to the emergency room on a stretcher by ambulance. Since ambulances were not wheelchair-accessible, I had to make my way to the hospital.
Yellow cabs zoomed by me. But after years of advocacy, cabs were still not wheelchair accessible. I avoided the subway, since not all stations were accessible and the gap between platform and train could be dangerous. Buses, my usual means of transportation, ran infrequently at night, and I was too agitated to sit and wait at a stop. Access-A-Ride was not for emergencies, reservations had to be made in advance. Taking the streets seemed the only option. Thankful for June’s mildness, I wheeled as fast as I could, supercrip by necessity in spite of my age and post-polio. I got to the hospital not long after the ambulance.
In the ER, they inserted a gastro tube through Danny’s nose to drain his stomach, which gave him some relief, while they ran tests. Dr. Crest, one of Danny’s doctors, stopped in after 1 AM. He assured us Danny would have the best surgeon—that’s how we learned they needed to operate.
But Danny didn’t get admitted until after 7 AM. The delay was due to the ventilator. They wouldn’t take him on the gastro-intestinal floor with a ventilator. Nor could he go on the pulmonary floor if he was having intestinal surgery.
When the woman in the white coat came, I thought she was the respiratory therapist we’d been expecting. She was carrying a thick folder. She smiled a lot, unlike the others who were too busy for pleasantries. The smiles made me guess she was a social worker. I’d brought Danny’s wallet and immediately took out his Medicare and insurance cards.
“Oh, I found him in our database. Unless his coverage has changed, I don’t need those. But I do need to ask a question.”
I looked up at her, but she was smiling directly at Danny.
“I didn’t see a DNR in your chart.” At the sound of those three letters, I jumped. “Does that mean you would want to be resuscitated should your heart stop?”
Danny was pretty out of it, yet his answer came quickly. “You bet I would!” He gave her one of his own fake smiles, a sinister imitation of hers.
“Wouldn’t you if your heart stopped?” I asked, but she wasn’t paying attention to me.
“Even if an attempted resuscitation would be disruptive and futile?”
Futile—another scary word. Some hospitals refused care that was judged “futile.”
Danny’s fake smile grew wider and more sinister. “You better believe it!”
“And are you comfortable being on the breathing machine? Was it your choice to go on it?”
“No, she forced me,” Danny pointed at me with his eyes. I was glad that, no matter how sick he was, he still had his sense of humor. But this was no time to kid around.
Finally, the woman turned toward me. “You’re Nadina.” I couldn’t make out the name on her tag. Her straight hair was platinum, and expertly cut with tapered ends that looked like arrows.
“Yes.” No matter how I tried, I couldn’t produce a smile. “Danny has used the ventilator successfully since 2005. He’s able to do much more, be more productive, since he can breathe well. We’re very happy.” Why did I have to stress that Danny was “productive?” Don’t mistake my guy for a useless eater, lady! Why did I feel compelled to say we were happy? I didn’t need to justify our lives to this stranger with arrow-straight platinum hair. “We’re very happy,” I repeated, pushing my own dark, wavy and unruly hair away from my face.
Should I have told her what a brilliant organizer Danny was? How hard we worked to make this a better world for our people? How we used to get arrested together [for civil disobedience]? Should I have mentioned how proud Danny got when friends said that, with the vent and the beard, and the few pounds my Sicilian cooking put on him, he resembled Ed Roberts? The “father of independent living” had died of a heart attack in ’95 but lived on as an icon of our movement. Of course, this classy lady wouldn’t have known who Ed Roberts was.
Did she think Danny would have been better off dead? Would she have rather died than be like Danny, or like me?
She nodded, “I had to ask,” and walked away.
Greater than the fear they couldn’t save Danny’s life was the fear they might judge his life not worth saving. A man who couldn’t move, couldn’t control his bodily functions, couldn’t even breathe on his own, did he want to live no matter what?
The doctors who’d treated him for years knew our wishes. But what if they weren’t around when needed? I had to be there in case Danny was too sick to tell an eager resident or a smiling lady, “You bet I want to live,” and tell them how he loved me and I loved him and how much we loved our crippled lives.
Nadina LaSpina is a prominent activist in the disability rights movement and has been arrested countless times for civil disobedience. You can find her in the streets with Disabled In Action, ADAPT, the Disability Caucus, and other groups. After teaching Italian for many years, LaSpina created and taught courses in Disability Studies at The New School. She lives in New York City.
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