Thursday, April 15, 2010

Season of Worry: Parenting with a disability

Here's a link to an article I had published recently on a parenting website.

Sunday, February 14, 2010

Keeping my father company

I talked to my father yesterday. This wouldn't be a big deal except that I haven't talked to him in a couple of years and I knew it would be a shock for him to hear my voice.

First I got a call from my brother who was panicked about the possibility of my father's death. "He's having trouble breathing again. He called me in the middle of the night. He's scared."

"Have you called 911?" Sometimes I could kick myself for my knee-jerk crisis counselor response.

"No," says my brother. "He doesn't want to go. He hates hospitals."

"We all hate hospitals,"I wanted to yell to him, call 911."

But I didn't say that. I let my brother talk about his difficult relationship with our father. How he had mixed feeling about having to take care of him now. How he wished our father had taken better care of himself.

"...And he's still smoking dope."

Several years ago my father was diagnosed with emphysema and congestive heart failure. Smoking of any kind is tantamount to a suicide attempt. I didn't say that either.

"I understand that it's his choice to smoke," said my brother.

"It's the choice of an addict," I countered. My brother cleared his throat. He didn't like how I framed our father's life in the context of his various addictions.

"...So I'm calling to tell you that I don't know how much time he has left."

There was a pause.

"Okay," I said.

He was waiting me to say something more and when I didn't he started talking fast. He talked about his responsibilities about his mixed feelings about taking care of him, about not wanting to pass judgement on my relationship with our father--

"Are you saying you want me to call him?"[

My brother sounded instantly relieved. "Would you?"

"I'll call him, I said.

Shortly afterward, I got a call from my mother. She was worried about my brother's agitation over his father. She told me she would go over to my father place to see how he was doing.

"I'll get him to the hospital," she said."

"Are you sure you wanna do this?"

You're brother has to work. I'll do it."

My parents have lived apart for decades. She viewed him completely differently now. He was ill, physically weak, a shrunken version of his former brawny self He was no longer the big, loud overwhelming abuser she once had been forced to escape.If anyone could get him to go to the hospital, I knew she could. She was heading over there once she off the phone with me.

I'll call him and keep him company 'til you get there," I said.

"Good, she said.

My heart beat a little faster at the thought of talking to my father after such a long silence between us. Would I run out of things to say? Should I do this? A five second debate flashed through my head. Should I do this? Would I run out of things to say I made sure I was comfortably seated, and dialed.

"Hello? He answered the phone almost immediately. I imagined lying down in his apartment, his phone right by his hand,My father's deep voiced quavered. He was breathless, gasping. The low timbre of his voice washed over me and I wasn't nervous anymore. This was the voice of my childhood.

J?" I said, It's Katinka"

"Oh!" he said. 'Oh!"

"I'm breathless, he said.

"I know," I said. People have been telling me that you're going through a hard time."

"I have a cold and it makes the breathing even worse."

"Mom is on the way to help you. I'll stay on the phone with you til she get's there."

Yah? He said. The thought of someone coming over, even my mother was already making him feel better. He was trying to catch his breath but couldn't do it.

"Please pardon me, he said, "I can't talk much."

"I'll talk, " I said.

We stayed on the phone for about forty minutes, until I heard my mother take the phone from him and tell me she'd arrived. I talked about anything I could think of, about Ethan, about my cat who was sitting on my chest, about my recovery from my accident, about lovely New Jersey. During the call my father did ease his breath. He seemed less nervous. Considering our family history, the danger, the domestic violence I could've easily hung up on him or yelled at him or ignored him altogether.For me, this call was a small example of 'staying in the moment' of letting go of painful history to help my father feel better in the present. It occured to me that even the most estranged, exploded family like mine no doubt is, sometimes has the rare chance to come together and support one another. At least while we're all still breathing.

Friday, January 29, 2010

The Halo effect

It's been three weeks since that remarkable interview at the independent living center where I hoped for a case management job. During the interview I felt that interviewer and had truly connected. The flow of our conversation was both relaxed and tinged with the excitement of this job being such a good fit with my social service experience. We talked about the second interview where I would meet the director of the organization. I asked as I was leaving whether I should call in several weeks 'just to see where we are" in terms of scheduling a second interview.

"No," my interviewer said, "we'll call you."

That call never came. So I didn't even make it to the second interview.

I can't help but ask myself--is it something I said? Is it my resume? Am I too old? Did I come on too strong or not strong enough?


We had such as vibrant conversation, I thought. At one point during our exchange, my interviewer said, "It's such a pleasure to meet someone and not have to explain the meaning of the Independent Living Philosophy."

"I am the Independent Living Philosophy," I said and we laughed. From the beginning my interviewer said repeatedly how much she admired the things I had done. She wanted to know all about my work as a Writing Coach, a business I had started that is commensurate to my interests (and my degree) and a way to bring in some extra money as I look for a job While the interview flowed easily, a little alarm went off when she started admiring me aloud and veering away from my qualifications for the specific job.

She showered me with praise. I'll admit it felt good. but somehow it also created some distance between us. She put me on some kind of pedestal because I wasn't looking for assistance like the usual client with a disability. I was actually putting myself out there for a job, like anyone would do.

It would be easy to find fault with my interviewer. Too easy. I liked her intelligence, her frankness. She would have made a great boss. When someone sees me as a functional independent person, I tell them stories, give them work-related examples, evidence of that functionality. Is that too much information?

Maybe. If it is, I feel like it shouldn't be.

As we were talking I felt a halo appear above my head. I saw it there as clear as the bullet points on my resume. Did she create the halo or did I conjure it for myself ?Don't tell me how fantastic I am, I wanted to say to her. Give me a job. Halos are lovely because they make everything seem golden. Halo's don't help pay the bills.

The other tactic of Not giving information about my accomplishments feels like it dumbs me down, plays into a streotypical a narrow image of disability which hardly feels appropriate.

The answer must be to find the balance between "Disability fabulousness" and the reality of my day to day life as a person, a woman, a mother, a writer, a social service professional with a disability.

It's slightly ironic considering that by definition, with my cp, I have no balance. Literally. The crutches are there to keep me from falling down. My crutches create the balance I need to live my life from day to day. Still it felt good to put myself out there. To know that I'm actively looking for a job and not sitting on my ass waiting for something to happen.Some friends are saying that I should call my interviewer back anyway, just to check in. Jog her memory. Keep it casual. All I can say to that is: maybe.