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. www.mamapedia.com/voices/season-of-worry-parenting-with-a-disability
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.
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?
Maybe.
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.
"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?
Maybe.
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.
Thursday, December 31, 2009
Some Difficuly, Corny, Silly and Real Lessons I Learned in 2009
1. Watch out for cars! They don't see very well and have big, big teeth.
2. Pain management is a good thing, even if it comes in the form of bracing cups of tea and chocolate chip cookies.
3. Play with your kid during unexpected moments. Makes both of you feel really good. I played hide and seek with E while shopping at a holiday sale at the Gap. Made E happy, made the sales manager sad.
4.When your kid says "I have something to tell you," put down the cell phone tear yourself away from the computer, and listen. At least until your next email notification.
5. When dealing with a souless organization stay calm. If that doesn't work, write many letters and make many phone calls. If that doesn't work yell. If that doesn't work do all of the previously mentioned at the same time. If that doesn't work start your own soul-full organization.
6. When you need help ask for it. Really.
7. Never underestimate the power of uninterrupted sleep. And good books and friends and that funny OT contraption that helps you pull your socks on.
8. Get outside when you can. There will be lots of days and nights when you might not be able to go outside.If you don't go outside when you can all the days and nights will run in together until all you notice is the greyness of things and then people will want to give you drugs to turn the lights on inside your head. Believe me, going outside is easier.
9. Remember: You are not alone. You are not alone. You are not alone. This is especially evident when you leave your house.
10. Life is equal parts difficult and beautiful. I don't know, I'm still thinking about that one but I do know that when Your Life Truly Sucks it will soon pass into another moment that may suck less. Try to hold on for that suck less moment. It'll happen.
11. Add your own lesson here: ______________________________________
2. Pain management is a good thing, even if it comes in the form of bracing cups of tea and chocolate chip cookies.
3. Play with your kid during unexpected moments. Makes both of you feel really good. I played hide and seek with E while shopping at a holiday sale at the Gap. Made E happy, made the sales manager sad.
4.When your kid says "I have something to tell you," put down the cell phone tear yourself away from the computer, and listen. At least until your next email notification.
5. When dealing with a souless organization stay calm. If that doesn't work, write many letters and make many phone calls. If that doesn't work yell. If that doesn't work do all of the previously mentioned at the same time. If that doesn't work start your own soul-full organization.
6. When you need help ask for it. Really.
7. Never underestimate the power of uninterrupted sleep. And good books and friends and that funny OT contraption that helps you pull your socks on.
8. Get outside when you can. There will be lots of days and nights when you might not be able to go outside.If you don't go outside when you can all the days and nights will run in together until all you notice is the greyness of things and then people will want to give you drugs to turn the lights on inside your head. Believe me, going outside is easier.
9. Remember: You are not alone. You are not alone. You are not alone. This is especially evident when you leave your house.
10. Life is equal parts difficult and beautiful. I don't know, I'm still thinking about that one but I do know that when Your Life Truly Sucks it will soon pass into another moment that may suck less. Try to hold on for that suck less moment. It'll happen.
11. Add your own lesson here: ______________________________________
Sunday, December 20, 2009
The Hug Schedule
As as I was tucking Ethan into bed the other night, stuffing every free space on the mattress with stuffed animals, turning on the nightlight and generally performing the nightly before bed rituals, Ethan said to me with absolute certainty, "Mommy, I need a schedule."
"Schedule? What kind of schedule?" I had no idea what he was talking about. It surprised me that this gleefully rambunctious four year old could come up with the word, let alone the meaning of it. Let's get real: I would love to be one of these supermothers that keeps their kid on an activity schedule, sets up recurring playdates and is organized in that soccer mom kind of way. I count myself lucky that my son likes to go to bed at the same time every night and takes bathes voluntarily.
"Nooooo Mommy," he said in that exagerated, exasperated way of little kiddom "This, is my schedule. This pillow." He picked a small pillow decorated with painted lobsters. He listed numbers out loud : ..."50, 72, 12, 41....." Ethan waited for me to understand.
"You want to make a schedule of numbers?"
"Schedule for hugs!" he said and let himself fall back on his captain's bed for added drama.
"Ohhh! I said, you want to make 'Hug Schedule.'
"Yes, Mommy! Yes!" Excitement ejected him into the air.
Let me explain: When I got home from Kessler, Ethan was certain that I would, suddenly and without warning, go away again. To give him extra reassurance, I started a new routine at bed time. No matter who puts him to bed, I visit him without fail, five minutes after lights off. The 'Five Minute Check' as we call it, usually entails a hug. I sit in my wheelchair and he scrambles up on my lap. After he chooses a number from 1 to 100, the hug must last the number of seconds he dictates. Every night, he giggles as I squeeze him for all he's worth. I whisper and count in his ear. He let's his body go slack in a swoon and completely relaxes. This little ritual is just enough for him to pop happily back into bed without a worry of where I'll be when he wakes.
The next day at the kitchen table we made a grid of the days of the week and we filled in the squares with numbers. Ethan scribbled a bit on the page and pronounced it perfect. He took the stickers from a bag of apples and used them to stick the Hug schedule to his bedroom door. That night he checked the grid and declared that tonight being a Thursday was a 49 second hug. According to the first row of schedule.
"Okay," I said as he hopped up on my lap. He stared at the grid from his higher vantage point.
"What happens when the we use up all these numbers?"
"We'll make another hug schedule."
"Good," said Ethan.
I gave him a good squeeze and start counting.
"Schedule? What kind of schedule?" I had no idea what he was talking about. It surprised me that this gleefully rambunctious four year old could come up with the word, let alone the meaning of it. Let's get real: I would love to be one of these supermothers that keeps their kid on an activity schedule, sets up recurring playdates and is organized in that soccer mom kind of way. I count myself lucky that my son likes to go to bed at the same time every night and takes bathes voluntarily.
"Nooooo Mommy," he said in that exagerated, exasperated way of little kiddom "This, is my schedule. This pillow." He picked a small pillow decorated with painted lobsters. He listed numbers out loud : ..."50, 72, 12, 41....." Ethan waited for me to understand.
"You want to make a schedule of numbers?"
"Schedule for hugs!" he said and let himself fall back on his captain's bed for added drama.
"Ohhh! I said, you want to make 'Hug Schedule.'
"Yes, Mommy! Yes!" Excitement ejected him into the air.
Let me explain: When I got home from Kessler, Ethan was certain that I would, suddenly and without warning, go away again. To give him extra reassurance, I started a new routine at bed time. No matter who puts him to bed, I visit him without fail, five minutes after lights off. The 'Five Minute Check' as we call it, usually entails a hug. I sit in my wheelchair and he scrambles up on my lap. After he chooses a number from 1 to 100, the hug must last the number of seconds he dictates. Every night, he giggles as I squeeze him for all he's worth. I whisper and count in his ear. He let's his body go slack in a swoon and completely relaxes. This little ritual is just enough for him to pop happily back into bed without a worry of where I'll be when he wakes.
The next day at the kitchen table we made a grid of the days of the week and we filled in the squares with numbers. Ethan scribbled a bit on the page and pronounced it perfect. He took the stickers from a bag of apples and used them to stick the Hug schedule to his bedroom door. That night he checked the grid and declared that tonight being a Thursday was a 49 second hug. According to the first row of schedule.
"Okay," I said as he hopped up on my lap. He stared at the grid from his higher vantage point.
"What happens when the we use up all these numbers?"
"We'll make another hug schedule."
"Good," said Ethan.
I gave him a good squeeze and start counting.
Sunday, November 29, 2009
Trains, Planes and the Garden State Parkway
While I take a few hours of writing for myself, my son is on an adventure today. Like most four year old boys, Ethan has a rabid, unerring, constant passion for trains. Well, he loves vehicles of all sizes but trains are by far his favorite. Oh and did I say he loves maps too? Especially New Jersey and New York maps dotted with local highways and turnpikes and skyways.Cabbies around here become a little freaked out when they strap my son into his seat and then he gives them precise directions home. When we go to our neighbourhood Krauzer's for a quart of milk unlike most kids who'll beg for a lollipop, E will beg for a lollipop AND a map of Hudson County.
Today, Ethan is driving with his daddy to Jersey City and from there, they're taking a the path train into the city. In one fell swoop all of his major interests will come rushing up to meet him: trains, maps and handing money to grown-ups. He and daddy will have an indepth conversation about what route to take to Jersey City, and then--this part his a surprise--go down into the train for the first time. E may well be wide eyed with excitement! The noise! The people! Daddy will let him pay the fare and they'll hold hands as they step onto the car. E will rivited by the rumble, maybe a little frightened by the flashing lights and the darkness of the tunnel.
And if that isn't enough, once they re-emerge into the city it's just a quick walk to Dinosaur Hill a small but spectacular toy store on the Lower East Side where I'm sure E will avail himself of a tiny fire engine or a garbage truck, some four wheeled thing that fits in the pocket of his jeans. Then, after a well deserved snack, chocolate milk and a cookie I wager, they get to do it all again back to the car in Jersey City.
Don't misunderstand, I'm grateful to have this small window of time to write without interruption. It's a beautiful day in the neighbourhood and I plan to enjoy it. But I also look forward to that new knowing look in Ethan's eye, that look of actually having been inside a passenger car of speeding train.Later, When I ask him how his day was, he'll look at me only say, "Good." And then he'll go back to the business of constructing a garage on the living-room floor.
Today, Ethan is driving with his daddy to Jersey City and from there, they're taking a the path train into the city. In one fell swoop all of his major interests will come rushing up to meet him: trains, maps and handing money to grown-ups. He and daddy will have an indepth conversation about what route to take to Jersey City, and then--this part his a surprise--go down into the train for the first time. E may well be wide eyed with excitement! The noise! The people! Daddy will let him pay the fare and they'll hold hands as they step onto the car. E will rivited by the rumble, maybe a little frightened by the flashing lights and the darkness of the tunnel.
And if that isn't enough, once they re-emerge into the city it's just a quick walk to Dinosaur Hill a small but spectacular toy store on the Lower East Side where I'm sure E will avail himself of a tiny fire engine or a garbage truck, some four wheeled thing that fits in the pocket of his jeans. Then, after a well deserved snack, chocolate milk and a cookie I wager, they get to do it all again back to the car in Jersey City.
Don't misunderstand, I'm grateful to have this small window of time to write without interruption. It's a beautiful day in the neighbourhood and I plan to enjoy it. But I also look forward to that new knowing look in Ethan's eye, that look of actually having been inside a passenger car of speeding train.Later, When I ask him how his day was, he'll look at me only say, "Good." And then he'll go back to the business of constructing a garage on the living-room floor.
Saturday, November 14, 2009
Quadrupedalism
Since getting my cast off on October 24th, I've been dragging my ass. I've been mopey and dopey instead of celebrating the fact that I'm actually recovering from what was a difficult accident for me and my family. I've done the work: taken the meds, worked the gym, talked to the lawyers, confronted the machine that is the Insurance Industry. I've been my own best cheerleader yet I find that I'm cranky and blue, generally getting in the way of my own ordinary happiness.
I did what I would normally do when I find myself in another such foul mood, I went for a walk. This time I walked in my local library while E was happily absorbed in a pile of Clifford books. The floor of the library is carpeted which cushions the impact for my left leg and ankle. I couldn't help but notice that since I've been wearing that god awful 'old lady' support stocking, the pain in my foot has greatly diminished, and bearing weight in my castless leg wasn't half bad, really. So, taking a deep breath I shuffled along keeping my grunts to a minimum so as not to disturb my fellow readers at the library. After a while, I became aware of the rhythm of my own footsteps, moving one crutch and one foot forward slowly and simultaneously, first the left, then and the right, left and right and so on.
And then, in midstep it dawned on me. I hate moving slowly. I hate it. When I move one leg after another with way bipeds do, my navigation feels self-concious and utterly, interminably slow, as if I'll never get to where I want to go. Walking like a biped, I feel CRIPPLED in the worst sense, deflecting the sypathetic glances of well meaning bipeds. I huff and puff and inch along. Fact is, since my accident, my legs have been too weak to carry the weight of my tried and tru swing-thru walk. That is, I move two crutches forward at the same time and swing both my legs forward in a kind of hopping mini pole vaulting move. It's my walk. It's my CRIP walk. It's the way I cover twice as much ground in half the time. It's the walk that compels stranger bipeds to tell me to slow down. It's the walk that makes my mother sigh and my physical therapist cringe. It looks crooked and dangerous but it works for me When I walk like the quadruped that I am I feel autonomous and strong and in control of my body. Walking like a biped makes me feel like I trying to measure up to a standard that doesn't make sense. I am NOT one of crowd. I like my loud, happy, hear- it- for- miles gallop.
There I was on the top floor of the library and I thought what the hell, let me give it a try. It hasn't happened in a long time but maybe today will be different. I readied my crutches and moved them forward. I tranferred my weight and what do you know, my legs swung! No big deal, no huge struggle, no wobble or fall or 'oh no' moment. Before I knew it I was relaying around the circumference of the library giggling like a kid in a playground. Yay! I'm a Quadruped! I AM a Quadruped! I motored over to E, laughing, gasping, feeling younger than I have in years.
"Hi E!" I waved a crutch at him talking louder than I should've but what the hell.
"Hi Mommy," he said calmly. "I'm reading about Clifford the Big Red Dog," he said.
"That's good, Boo." E went back to his book. And I spun around to give my legs another chance to swing.
I did what I would normally do when I find myself in another such foul mood, I went for a walk. This time I walked in my local library while E was happily absorbed in a pile of Clifford books. The floor of the library is carpeted which cushions the impact for my left leg and ankle. I couldn't help but notice that since I've been wearing that god awful 'old lady' support stocking, the pain in my foot has greatly diminished, and bearing weight in my castless leg wasn't half bad, really. So, taking a deep breath I shuffled along keeping my grunts to a minimum so as not to disturb my fellow readers at the library. After a while, I became aware of the rhythm of my own footsteps, moving one crutch and one foot forward slowly and simultaneously, first the left, then and the right, left and right and so on.
And then, in midstep it dawned on me. I hate moving slowly. I hate it. When I move one leg after another with way bipeds do, my navigation feels self-concious and utterly, interminably slow, as if I'll never get to where I want to go. Walking like a biped, I feel CRIPPLED in the worst sense, deflecting the sypathetic glances of well meaning bipeds. I huff and puff and inch along. Fact is, since my accident, my legs have been too weak to carry the weight of my tried and tru swing-thru walk. That is, I move two crutches forward at the same time and swing both my legs forward in a kind of hopping mini pole vaulting move. It's my walk. It's my CRIP walk. It's the way I cover twice as much ground in half the time. It's the walk that compels stranger bipeds to tell me to slow down. It's the walk that makes my mother sigh and my physical therapist cringe. It looks crooked and dangerous but it works for me When I walk like the quadruped that I am I feel autonomous and strong and in control of my body. Walking like a biped makes me feel like I trying to measure up to a standard that doesn't make sense. I am NOT one of crowd. I like my loud, happy, hear- it- for- miles gallop.
There I was on the top floor of the library and I thought what the hell, let me give it a try. It hasn't happened in a long time but maybe today will be different. I readied my crutches and moved them forward. I tranferred my weight and what do you know, my legs swung! No big deal, no huge struggle, no wobble or fall or 'oh no' moment. Before I knew it I was relaying around the circumference of the library giggling like a kid in a playground. Yay! I'm a Quadruped! I AM a Quadruped! I motored over to E, laughing, gasping, feeling younger than I have in years.
"Hi E!" I waved a crutch at him talking louder than I should've but what the hell.
"Hi Mommy," he said calmly. "I'm reading about Clifford the Big Red Dog," he said.
"That's good, Boo." E went back to his book. And I spun around to give my legs another chance to swing.
Small Acts of Independence
I expected a feeling of elation, a big moment, a revelation, an ephiphany when I finally got the cast off. I was nervous about standing up my own two feet once again, but I did it anyway; slipped the foam slipper I'd worn for months back on my newly naked left foot and walked out of the Orthopedic surgeon's office under my my own power. There were no bugles sounding no fireworks--only an intense feeling of relief. I had finally made it to the last leg, in a manner of speaking, of my recovery. My leg didn't even look that different, (my leg muscles are atrophied anyway). Somehow the muscle tone around my knee seemed a little, I don't know, deflated but nothing shocking considering 4 months of hibernation.
For all of the anticpated excitement for my first shower in eons, I didn't go into the Y as planned but managed to climb into my own shower without to my surprise any assistance. As the water shushed down my back I thanked various higher powers for the opportunity to once again wash all of my body parts AT THE SAME TIME.
Rediscovering a favorite pair of jeans that previously could not make past a thickly casted leg is a simple pleasure not to be underestimated. Dressing by myself in something other than sweat pants goes a long way to restoring a familiar sense of self. Shed the dressings and layers of injury if only to put on a favorite pair of jeans and a clean tee-shirt.
How much of life is made up of these moments, small acts of independence, most of which are private, taken for granted and yearned for when even temporarily absent? More than I expected to be sure but I'm happy to reclaim all of them one by one even if the fanfare is only in my head.
For all of the anticpated excitement for my first shower in eons, I didn't go into the Y as planned but managed to climb into my own shower without to my surprise any assistance. As the water shushed down my back I thanked various higher powers for the opportunity to once again wash all of my body parts AT THE SAME TIME.
Rediscovering a favorite pair of jeans that previously could not make past a thickly casted leg is a simple pleasure not to be underestimated. Dressing by myself in something other than sweat pants goes a long way to restoring a familiar sense of self. Shed the dressings and layers of injury if only to put on a favorite pair of jeans and a clean tee-shirt.
How much of life is made up of these moments, small acts of independence, most of which are private, taken for granted and yearned for when even temporarily absent? More than I expected to be sure but I'm happy to reclaim all of them one by one even if the fanfare is only in my head.
What?What!
The other night, while I was cooking dinner, I got a call from my Durable Medical Equipment (DME) vendor.
"Hi," said the voice on the other end of the line, "DME Company will be coming by tomorrow morning to pick up your bed and wheelchair."
(A stunned silence on my part.)
"What?"
"We'll be picking up one hospital bed and one wheelchair in the morning."
"But I still have my cast on! I got the bed and chair because of my mobility limits with this cast on. You can't take the equipment back yet!" I don't know whether to panic or yell.
"Hmmm, we have an order from the insurance company to--"
"Who wrote the order?
"I don't know."
"You don't know?"
The voiced paused. "You better call the insurance company."
"You want ME to call the insurance company?" I didn't panic, I yelled.
"Hmmm," the voice said.
I hung up.
When I called the Insurance Company, another voice told me that my file could not be found.
"Where is it?"
The new voice said, "Let us put you on hold."
I waited.
"Hello, we're sorry to make you wait. We found your file."
Considering that I've had coverage for the past three months, I figured this was a good thing.
"According to your file the person handling your case is Mike B."
Of course I've never spoken to anyone named Mike B.
"Can you transfer me to Mike B?"
"Please hold."
I waited. I listened to Beatles muzak on the line and waited.
"This is Mike B."
I explained the situation to Mike B.
"Yeah," he said, "according to you file, the Insurance Adjustor tried to call you twice."
"She may have tried to call me, but this time I didn't get a message and I didn't talk to anyone."
I learned that in the world of Auto Insurance, the Adjustor is a Supreme Being. She decides if my coverage continues or ends. No debate.
Mike B said, "You should call the Insurance Adjustor."
"YOU WANT ME TO MAKE THE CALL?!"
"Let me call you back," he said.
Mike B called me back a few minutes later to tell me that the coverage for the hospital bed had been extended for another month. Then he said, "The DME vendor will pick up your wheelchair later on today."
WHAT? I pointed out, calmly this time, that if I still needed the hospital bed, would it not follow that I would still require the wheelchair?
"Let call you back," Mike B said.
Mike B never called me back a second time. The only reason I founded out that my coverage was extended for both the bed and the wheelchair was because I called the vendor to give an update on the situation.
"Oh sure," the customer service guy said casually, it says right here on the screen that your coverage has been extended until November 20ieth."
I can only hope that by then, my cast will be off. Just wait until I tell the vendors, reps, adjustors and whatnot that I'M PLANNING ON KEEPING THE WHEELCHAIR.
So there.
"Hi," said the voice on the other end of the line, "DME Company will be coming by tomorrow morning to pick up your bed and wheelchair."
(A stunned silence on my part.)
"What?"
"We'll be picking up one hospital bed and one wheelchair in the morning."
"But I still have my cast on! I got the bed and chair because of my mobility limits with this cast on. You can't take the equipment back yet!" I don't know whether to panic or yell.
"Hmmm, we have an order from the insurance company to--"
"Who wrote the order?
"I don't know."
"You don't know?"
The voiced paused. "You better call the insurance company."
"You want ME to call the insurance company?" I didn't panic, I yelled.
"Hmmm," the voice said.
I hung up.
When I called the Insurance Company, another voice told me that my file could not be found.
"Where is it?"
The new voice said, "Let us put you on hold."
I waited.
"Hello, we're sorry to make you wait. We found your file."
Considering that I've had coverage for the past three months, I figured this was a good thing.
"According to your file the person handling your case is Mike B."
Of course I've never spoken to anyone named Mike B.
"Can you transfer me to Mike B?"
"Please hold."
I waited. I listened to Beatles muzak on the line and waited.
"This is Mike B."
I explained the situation to Mike B.
"Yeah," he said, "according to you file, the Insurance Adjustor tried to call you twice."
"She may have tried to call me, but this time I didn't get a message and I didn't talk to anyone."
I learned that in the world of Auto Insurance, the Adjustor is a Supreme Being. She decides if my coverage continues or ends. No debate.
Mike B said, "You should call the Insurance Adjustor."
"YOU WANT ME TO MAKE THE CALL?!"
"Let me call you back," he said.
Mike B called me back a few minutes later to tell me that the coverage for the hospital bed had been extended for another month. Then he said, "The DME vendor will pick up your wheelchair later on today."
WHAT? I pointed out, calmly this time, that if I still needed the hospital bed, would it not follow that I would still require the wheelchair?
"Let call you back," Mike B said.
Mike B never called me back a second time. The only reason I founded out that my coverage was extended for both the bed and the wheelchair was because I called the vendor to give an update on the situation.
"Oh sure," the customer service guy said casually, it says right here on the screen that your coverage has been extended until November 20ieth."
I can only hope that by then, my cast will be off. Just wait until I tell the vendors, reps, adjustors and whatnot that I'M PLANNING ON KEEPING THE WHEELCHAIR.
So there.
Monday, October 12, 2009
Anticipating Water
My next appointment with the orthopedic surgeon is on October 20, and there's a good possibility that after another round of x-rays, I'll go home skinny-legged and castless. If this is true and my leg is finally set free I can take a shower. A real shower, with cascades of hot water and plenty of soap and steam and solitude. And because these days, I'm unable to concentrate on anything anyway, I find myself planning this long awaited ritual down to the smallest detail. There are so many questions: Where will I have it? How long will it be? What will I take with me?
I don't want to think about what my leg looks like under there, but I'm sure it's nothing a sharp razor and more rehab can't fix.
The shower in my house is out of the question, There are good bars in the tub/shower area but the bath always made it difficult to get in and out. Yes I could've probably wrapped my cast in plastic and duct tape but no way in hell, I'm going to risk falling and reinjuring myself. I don't know anyone else in Montclair or New Jersey for that matter that has a private accessible shower so this leaves the Y.
The Y has an area called the "Family Changing Room" which is two large bathrooms both of which have showers. One of the showers is completely accessible. I can lock the door behind me.There's a long bar against a wall, an adjustable showerhead, it's roll-in. There's even a shower chair but I notice that two of the rubber tips on the back legs are missing which makes the legs dangerously uneven. It's the kind of thing bipeds aren't likely to notice, a shower chair screaming LAWSUIT. I'll have to tell the maintenance guy. I'll bring my own shower chair. Have shower chair, will travel. If it seems like I'm rambling well I am, counting the days and choosing fresh towels. I can only hope that the Y has an endless supply of hot water. All I know is, I never want to take another sponge bath again.
I don't want to think about what my leg looks like under there, but I'm sure it's nothing a sharp razor and more rehab can't fix.
The shower in my house is out of the question, There are good bars in the tub/shower area but the bath always made it difficult to get in and out. Yes I could've probably wrapped my cast in plastic and duct tape but no way in hell, I'm going to risk falling and reinjuring myself. I don't know anyone else in Montclair or New Jersey for that matter that has a private accessible shower so this leaves the Y.
The Y has an area called the "Family Changing Room" which is two large bathrooms both of which have showers. One of the showers is completely accessible. I can lock the door behind me.There's a long bar against a wall, an adjustable showerhead, it's roll-in. There's even a shower chair but I notice that two of the rubber tips on the back legs are missing which makes the legs dangerously uneven. It's the kind of thing bipeds aren't likely to notice, a shower chair screaming LAWSUIT. I'll have to tell the maintenance guy. I'll bring my own shower chair. Have shower chair, will travel. If it seems like I'm rambling well I am, counting the days and choosing fresh towels. I can only hope that the Y has an endless supply of hot water. All I know is, I never want to take another sponge bath again.
Tuesday, September 29, 2009
Jiving to the Thumpa Thumpa
Some days when when Husbandman is finally out of the house, and E is happily on his way to preschool, I steal away at "my office" (usually a local cafe) and commune with an absurdly strong coffee and my computer. Occasionally, the muses are kind to me and half-way decent writing gets up there on the screen.
Some days, even though I'm still laid up with darn broken leg, I gamely search for employment hoping that the wilds of NJ will start to feel less foreign. This doesn't actually work but I do it anyway.
As I get older, (I'm 46) and tighter and less ambulatory and let's face it, crankier, the one activity that always makes me feel better (I'll save sex for a future blog ) is exercise. I'm now an obsessed member of my local Y and the gym therein.
I was already exercising by the time the leg broke but I had no idea if I could continue any kind of routine while I was healing and officially off my feet. I saw my self getting older faster and fatter and God forbid, crankier, sitting on my ass at home watching way too much HGTV--another inexplicable obsession. Unable to contemplate this future vision of myself, I went to the gym in my wheelchair, in the cast. I presented myself to my Maureen my favorite trainer (who rocks) and I asked, what can I do now?
Maureen brought me to the "weight room" a space filled with muscle-bound bipeds who grunted often and sweated even more.The room was cold and vibrated with 'athumpa thumpa' music. She moved lots of equipment out of the way, anchored the wheelchair on the shiny floor. She put weights with long cables into my hands and said, "Pull this."
I pulled. And I pull again. Soon I was pulling cables from every direction, working up a sweat in my unassuming wheelchair, trying to shoulder press large heavy objects that would kill you if they dropped on your head, and realized afterward that I was feeling a whole lot better because I didn't have time to think about anything else. I was jiving to the thumpa thumpa. Every time I came across an exercise I couldn't do, Maureeen and I and other trainers found ways to do the exercise in a universally user-friendly way. Here's a quick pet peeve: I get really sick of the word 'adapt' or 'adaptive' when referencing pwd's. When will equipment and non-crippy people for that matter, adapt to us?
Who knew that cables and weights could offer hours and hours entertainment and education? Well, I did. But there's a huge difference between thinking about something crankily, and actually doing it. In the evening I tell the soft bellied husbandman that "I had a really good work out today." He looks up from his Time Out magazine and nods vaguely in my direction. He has no idea that when my skinny left leg is finally set free I'm taking it and the rest of this body back to the gym. This time we're hitting the pool.
Some days, even though I'm still laid up with darn broken leg, I gamely search for employment hoping that the wilds of NJ will start to feel less foreign. This doesn't actually work but I do it anyway.
As I get older, (I'm 46) and tighter and less ambulatory and let's face it, crankier, the one activity that always makes me feel better (I'll save sex for a future blog ) is exercise. I'm now an obsessed member of my local Y and the gym therein.
I was already exercising by the time the leg broke but I had no idea if I could continue any kind of routine while I was healing and officially off my feet. I saw my self getting older faster and fatter and God forbid, crankier, sitting on my ass at home watching way too much HGTV--another inexplicable obsession. Unable to contemplate this future vision of myself, I went to the gym in my wheelchair, in the cast. I presented myself to my Maureen my favorite trainer (who rocks) and I asked, what can I do now?
Maureen brought me to the "weight room" a space filled with muscle-bound bipeds who grunted often and sweated even more.The room was cold and vibrated with 'athumpa thumpa' music. She moved lots of equipment out of the way, anchored the wheelchair on the shiny floor. She put weights with long cables into my hands and said, "Pull this."
I pulled. And I pull again. Soon I was pulling cables from every direction, working up a sweat in my unassuming wheelchair, trying to shoulder press large heavy objects that would kill you if they dropped on your head, and realized afterward that I was feeling a whole lot better because I didn't have time to think about anything else. I was jiving to the thumpa thumpa. Every time I came across an exercise I couldn't do, Maureeen and I and other trainers found ways to do the exercise in a universally user-friendly way. Here's a quick pet peeve: I get really sick of the word 'adapt' or 'adaptive' when referencing pwd's. When will equipment and non-crippy people for that matter, adapt to us?
Who knew that cables and weights could offer hours and hours entertainment and education? Well, I did. But there's a huge difference between thinking about something crankily, and actually doing it. In the evening I tell the soft bellied husbandman that "I had a really good work out today." He looks up from his Time Out magazine and nods vaguely in my direction. He has no idea that when my skinny left leg is finally set free I'm taking it and the rest of this body back to the gym. This time we're hitting the pool.
In Between
I missed myride today--my paratransit ride. I couldn't get out of my house. I mean, I got out my house, I just couldn't close the side door that leads to my fabulous ramp which brings me to the street where the damn bus was waiting. I could n't close the side door because I had the legs rests on the chair and I couldn't lean forward far enough to reach the door knob. I bent down to move the leg rests, but they jammed so I lunged for the door knob, finally reached it and closed the door. Slowly. Slowly enough to give the cat time enough to escape if he'd had his wits about him but luckily cats are nocturnal and for once he was more interested in napping in the basement than in dashing out to the backyard chewing grass and then gamely puking it up.
By the time the door was actually shut and my wheels slid down the ramp the bus was pulling away and I heard myself yelling, "Wait! Wait!" and then Motherf***er! repeatedly to a silent, mostly empty neighbourhood. I heard some construction work going on nearby and I hoped that I 'd yelled loud enough for someone to hear me. There's something oddly satisfying about swearing loudly and with feeling into the suburban miasma.
The paratransit office was hardly interested in my hard luck story and asked if I still wanted my ride back home.
"Yes!" I yelped. Off the phone, I packed my computer and called a cab. I could still get a coupla good hours of writing in before E's return from preschool.
These near misses have been happening a lot lately. I'm moving, but not quite fast enough, my leg is healing but very slowly, I'm writing but it's more of a chore than a joy these days. I have a physical therapist who's telling me to stay off my right leg(the uninjured onme) because of a recent stupid tendon injury, and an orthopedist who's telling me to walk more.
I am whatdoyacallit? Stuck. In "Wait" mode, waiting to get on with things. The mature adult me knows that everything is fine, that I'm lucky for so many reasons, that time will pass quickly whether I want it to or not. Today I'm tired of being in this "In between" stage of my life. Today, I'm impatient, pissed off, restless, would love to get up and get lost in the city, find a lover, a skilled one at that, eat good indian food, surround myself with art and artists and take in the energy of the 8 million heartbeats. That sounds like a good plan for the next several years.
Of course I'd have to come back for Ethan. I can't living without hugging and kissing my boy. I'd take him to the city for his first subway ride. He's been wanting to do that--go on the number 6 train just like the little one he carries in his hand. I'd take him to a museum, stare at some paintings and then we'd go the museum cafe for a snack. My mother and I used to go regularly to museums, stare at some paintings and then take a pastry break. In Ethan's case it would be a chocolate chip cookie break. With cold milk.
If nothing else this "in between" time in my life has givin me time to reflect on where I am in my life and where I want to be. It's no wonder I'm restless With so many people talking at me these days, issuing orders, offering advice I might simply choose to stay perfectly still, not move at all and take the time to read a book today--at least until paratransit comes to bring me home again.
I gotta get out more.
By the time the door was actually shut and my wheels slid down the ramp the bus was pulling away and I heard myself yelling, "Wait! Wait!" and then Motherf***er! repeatedly to a silent, mostly empty neighbourhood. I heard some construction work going on nearby and I hoped that I 'd yelled loud enough for someone to hear me. There's something oddly satisfying about swearing loudly and with feeling into the suburban miasma.
The paratransit office was hardly interested in my hard luck story and asked if I still wanted my ride back home.
"Yes!" I yelped. Off the phone, I packed my computer and called a cab. I could still get a coupla good hours of writing in before E's return from preschool.
These near misses have been happening a lot lately. I'm moving, but not quite fast enough, my leg is healing but very slowly, I'm writing but it's more of a chore than a joy these days. I have a physical therapist who's telling me to stay off my right leg(the uninjured onme) because of a recent stupid tendon injury, and an orthopedist who's telling me to walk more.
I am whatdoyacallit? Stuck. In "Wait" mode, waiting to get on with things. The mature adult me knows that everything is fine, that I'm lucky for so many reasons, that time will pass quickly whether I want it to or not. Today I'm tired of being in this "In between" stage of my life. Today, I'm impatient, pissed off, restless, would love to get up and get lost in the city, find a lover, a skilled one at that, eat good indian food, surround myself with art and artists and take in the energy of the 8 million heartbeats. That sounds like a good plan for the next several years.
Of course I'd have to come back for Ethan. I can't living without hugging and kissing my boy. I'd take him to the city for his first subway ride. He's been wanting to do that--go on the number 6 train just like the little one he carries in his hand. I'd take him to a museum, stare at some paintings and then we'd go the museum cafe for a snack. My mother and I used to go regularly to museums, stare at some paintings and then take a pastry break. In Ethan's case it would be a chocolate chip cookie break. With cold milk.
If nothing else this "in between" time in my life has givin me time to reflect on where I am in my life and where I want to be. It's no wonder I'm restless With so many people talking at me these days, issuing orders, offering advice I might simply choose to stay perfectly still, not move at all and take the time to read a book today--at least until paratransit comes to bring me home again.
I gotta get out more.
Saturday, September 12, 2009
9/11 Union Square
On September 11th, I was on my way to work, in a cab, late, as usual. I was in the Union Square area about a mile and a half away from the towers. I worked at CIDNY an Independent Living Center in Manhattan. The driver and I noticed the smoke in the sky. By the time I got out of the cab the streets were already thick with people. The first plane had hit. By the time I got to my desk, my co-workers had turned on radios, tv's any kind of communication device we could get our hands on. A group of my co-workers went back out to stand on the corner of University Place. The had a clear view of the the towers as they went down. I watched people crying and spinning in circles in Union Square. They were talking to themselves and holding on strangers. All at once, my co-workers, my supervisors and I began to grasp the enormity of what had happened. At that moment, our lives changed, and so did our jobs, We all had the same job: We pulled out our lists of clients, huge lists, and called everyone on those lists. There were and still are many PWD's living in lower Manhattan and Battery Park City, because many of the neighbourhoods are accessible with disability-friendly housing. We made it our business to FIND people. Sometimes it took weeks to track people down and we'd celebrate when they called us. Many were trapped in there apartments because of dust and debris. We made sure they had their meds, their equipment, shelter, food and whatever else they needed to survive and keep going. I always knew I was part of a community of people with disabilities, but nowI felt it and saw it all around me. I lived in Lower Manhattan too--about a mile and half from my office and two miles from the towers. That afternoon the only way I could get home was to walk. I walked slowly with a group of my co-workers. We dealt with the crowds, heat, confusion and that burning smell. For the next couple of days we camped out at my apartment together as we figured out how to get everybody home. I was grateful to be able to offer my home, to take care of people whom I loved and respected. It felt like the only possible response to the chaos. The burning smell lingered for a solid year. With or without a mask it was always there. I'd walk around my beloved New York City visiting people with disabilities in hotels and shelters. I'd think about fire and bone and melting metal and file cabinets, paper clips, suit jackets, and wedding rings. I think about the people with disabilities who were told to stay where they were and wait.I think about the pwd's who chose not to wait. I think about three thousand souls rising.
Monday, August 31, 2009
Kessler Diaries--9--Final Entry--Woman with CP Held Hostage by Auto Insurance Company"
When I was told it was time to leave Kessler and go home I thought it was too soon. I wanted more time. I lobbied for extra days.
"...But I still have trouble with transfers." (From the bed to the wheelchair. From the wheelchair to the toilet. And so on. ) And I can't take showers yet--And getting dressed is impossible and--"
Kessler doctors and physical therapists and occupational therapists and social workers were quick to reassure me that I would get the services and the medical equipment and supplies I needed at home.
I wasn't convinced. How was I to duplicate the level of care that I had received at this rehab center? I loved working out three hours a day and being pushed by the PT's and OT's to do more. Besides, I'd been told by other patients that I'd be sent home with a limited number of pain meds Thirty pills? That couldn't possibly be enough to continue the rehab and home or anywhere else, I argued. (Oh beloved percocet. Please don't leave me...")
Kessler staff asked what I thought I needed in order to feel more secure about going home.
I wanted a small hospital bed that offered options to change positions and heights. My own bed was too high to be manageable with my leg in cast up to my hip. I needed a wheelchair that was better fitted to me than the old crappy one I used at home. The wheelchair needed decent legsrests a good seat cushion and other basic stuff, like functioning brakes.
"Done." said Kessler staff. Apparently, my requests were standard and generally covered by insurance, in my case, and according to New Jersey law, my husbands' auto insurance.
Kessler staff got on the phone to put in the orders. Paper work was faxed and confirmed. A discharge date was chosen and I was scheduled to take an ambulette after lunch was was the usual procedure.
Okay, I thought, I can do this. My mother was staying with me during this transition and I'd be getting an aide in the mornings and PT at home. No reason to be nervous. Best of all, Ethan and I would finally be together again.
On the appointed day, I was washed, dressed, packed and ready to go. After breakfast I added a few more pieces to a puzzle I'd been trying to finish during my stay. My roommate and I exchanged phone numbers and promised to meet for burgers at Pal's a coveted local steakhouse. I thanked the aides, nurses, doctors, PT's OT's, social workers and food service staff. I said goodbye to fellow Kessler rehabers. I dutifully filled out a Kessler Satisifaction survey. I was, in short, Satisfied.
And then I waited.
By the time the pick up time for the ambulette came and went, I began to suspect that something had gone awry in the plans. My doctor's case manager dropped by and paused to admire a nearly complete puzzle.
"We're having issues," She hesitated not quite catching my eye. Mariam was a tall, dark, highly organized woman with a gentle smile and an upbeat skip to her step.
Issues?
We've been on the phone with the insurance company.They've given us paperwork that is completely new to us and---
We? I thought. Who's We?"
"And the Insurance Company refuses to authorize a wheelchair and a hospital bed for you."
What?
"I thought these were standard items."
Mariam nodded vigorously. "They are. We have no idea...Everybody's working on this. Me, the social workers, Dr. K, the PT's and OT's..." Her voice trailed.
Ah, there's the 'We.' "What's everybody doing?"
"They're on the phone. Yelling. They're faxing documents, writing letters."
"So what should I do?"
Mariam threw up her hands. "Have lunch." I'm sure we'll figure this out very soon."
When the lunch tray was picked up, aides came to my room and stripped my bed. In fact they moved my bed to another room. They mopped the floors and took out the trash, removed that pictures E and friends had left on the walls. In minutes, there was no trace of my existence in room 1086.
Several days before at home, my mother and a neighbour had dismantled my inaccessable bed and carried it to the garage. Furniture was moved and the bedroom was cleaned in anticipation of the hospital bed.
I took a final spin around the first floor.
I waited.
The ambulette never showed up. My doctor did.
"You're not going home today."
"But I'm scheduled--"\
"I know."
So now I didn't have a bed here or at home. It would take hours to move and reassemble my own bed.
I tried again.
"But isn't the insurance company spending more money on me by keeping me at Kessler than by sending me home with a bed and a wheelchair?"
Doctor K shrugged as if to say, "Go figure." We sat silently for a minute as if to let the stupidity of this situation settle between us. "I'm sorry, " she said.
"What should I do now?"
"Whatever you want."
I made phone calls to tell my family to say that I'd be going home tomorrow, not today. Bed 2 reappeared along with clean sheets and a fresh bouquet of flowers in the vase by the window.
I went to the gym and worked out. Hard. I lifted weights and heard the echoes of all the people, the OT's, PT's, case managers and doctors who would be on the phone on my behalf, til end of business today. I cursed the insurance wonk who read my file and made the decision about where I was to sleep that night. I hoped his/her ears were ringing, his/her face was burning while I did another twenty minutes on the arm bike.
"...But I still have trouble with transfers." (From the bed to the wheelchair. From the wheelchair to the toilet. And so on. ) And I can't take showers yet--And getting dressed is impossible and--"
Kessler doctors and physical therapists and occupational therapists and social workers were quick to reassure me that I would get the services and the medical equipment and supplies I needed at home.
I wasn't convinced. How was I to duplicate the level of care that I had received at this rehab center? I loved working out three hours a day and being pushed by the PT's and OT's to do more. Besides, I'd been told by other patients that I'd be sent home with a limited number of pain meds Thirty pills? That couldn't possibly be enough to continue the rehab and home or anywhere else, I argued. (Oh beloved percocet. Please don't leave me...")
Kessler staff asked what I thought I needed in order to feel more secure about going home.
I wanted a small hospital bed that offered options to change positions and heights. My own bed was too high to be manageable with my leg in cast up to my hip. I needed a wheelchair that was better fitted to me than the old crappy one I used at home. The wheelchair needed decent legsrests a good seat cushion and other basic stuff, like functioning brakes.
"Done." said Kessler staff. Apparently, my requests were standard and generally covered by insurance, in my case, and according to New Jersey law, my husbands' auto insurance.
Kessler staff got on the phone to put in the orders. Paper work was faxed and confirmed. A discharge date was chosen and I was scheduled to take an ambulette after lunch was was the usual procedure.
Okay, I thought, I can do this. My mother was staying with me during this transition and I'd be getting an aide in the mornings and PT at home. No reason to be nervous. Best of all, Ethan and I would finally be together again.
On the appointed day, I was washed, dressed, packed and ready to go. After breakfast I added a few more pieces to a puzzle I'd been trying to finish during my stay. My roommate and I exchanged phone numbers and promised to meet for burgers at Pal's a coveted local steakhouse. I thanked the aides, nurses, doctors, PT's OT's, social workers and food service staff. I said goodbye to fellow Kessler rehabers. I dutifully filled out a Kessler Satisifaction survey. I was, in short, Satisfied.
And then I waited.
By the time the pick up time for the ambulette came and went, I began to suspect that something had gone awry in the plans. My doctor's case manager dropped by and paused to admire a nearly complete puzzle.
"We're having issues," She hesitated not quite catching my eye. Mariam was a tall, dark, highly organized woman with a gentle smile and an upbeat skip to her step.
Issues?
We've been on the phone with the insurance company.They've given us paperwork that is completely new to us and---
We? I thought. Who's We?"
"And the Insurance Company refuses to authorize a wheelchair and a hospital bed for you."
What?
"I thought these were standard items."
Mariam nodded vigorously. "They are. We have no idea...Everybody's working on this. Me, the social workers, Dr. K, the PT's and OT's..." Her voice trailed.
Ah, there's the 'We.' "What's everybody doing?"
"They're on the phone. Yelling. They're faxing documents, writing letters."
"So what should I do?"
Mariam threw up her hands. "Have lunch." I'm sure we'll figure this out very soon."
When the lunch tray was picked up, aides came to my room and stripped my bed. In fact they moved my bed to another room. They mopped the floors and took out the trash, removed that pictures E and friends had left on the walls. In minutes, there was no trace of my existence in room 1086.
Several days before at home, my mother and a neighbour had dismantled my inaccessable bed and carried it to the garage. Furniture was moved and the bedroom was cleaned in anticipation of the hospital bed.
I took a final spin around the first floor.
I waited.
The ambulette never showed up. My doctor did.
"You're not going home today."
"But I'm scheduled--"\
"I know."
So now I didn't have a bed here or at home. It would take hours to move and reassemble my own bed.
I tried again.
"But isn't the insurance company spending more money on me by keeping me at Kessler than by sending me home with a bed and a wheelchair?"
Doctor K shrugged as if to say, "Go figure." We sat silently for a minute as if to let the stupidity of this situation settle between us. "I'm sorry, " she said.
"What should I do now?"
"Whatever you want."
I made phone calls to tell my family to say that I'd be going home tomorrow, not today. Bed 2 reappeared along with clean sheets and a fresh bouquet of flowers in the vase by the window.
I went to the gym and worked out. Hard. I lifted weights and heard the echoes of all the people, the OT's, PT's, case managers and doctors who would be on the phone on my behalf, til end of business today. I cursed the insurance wonk who read my file and made the decision about where I was to sleep that night. I hoped his/her ears were ringing, his/her face was burning while I did another twenty minutes on the arm bike.
Friday, August 28, 2009
Kessler Diaries--8 "You're My Favorite Boo."
Ethan saw me walking the other day. It was the first time since the car accident. So far he's seen me injured and in shock at the the time of the accident. He's seen me immobile and managing pain in a hospital bed. He's watched me regain some independence in my wheelchair with two new leg rests attached to keep my legs in the best position. Because my leg is healing properly, I've started putt-putting around the house with a walker, now that I'm finally allowed to bear weight on my left side.
When Ethan spotted me he rushed up, still in his pyjamas and hopped nervously from foot to foot.
"Mommy! What are you doing?" He yelped.
"I'm walking, Boo."
"Walking? You're walking? His voice sqeaked. He wanted to be close. He stood right next to me, just on the other side the walker's frame. "Mommy..Mommy," He whispered and he rubbed my arm. "It's allright, Mommy"
"Yes it is, Boo." I said firmly as we moved past the kitchen.
Every time I feel like bitching about my current situation I remember that the accident has had the most impact on my four year old son. When it happened, uninjured Ethan jumped off my lap and wailed, "It's my fault!" He was convinced he had done something wrong to cause the car to hit us.
Two days after I was taken to the hospital in Montclair, he asked his father whether I was gone forever.
Brought faithfully by my mother, Ethan visited me every day during my stay at Kessler. Every day, he would seperate me from other visitors for us to spend some time alone. He pushed me up and down the halls, stopping to introduce me to nurses and aides or whomever we happened to encounter along the way. At first he was reluctant to clamber up on my lap for fear of hurting my leg, but wanting his usual hugs and kisses he soon got over that and would settle into my lap to say goodbye. Our visits always ended the same way:
I asked as I had done since he was very young: "Are you my favorite Boo?"
"Yes!" He'd say and I'd feel his body relax. We'd sit this way for the last few minutes enjoying each other's warmth.
My mother regaled me with stories of episodes of acting out that included tantrums, sudden teary outbursts and his newest behavior, screaming "NO! NO! NO!" when he woke up in the morning and he realized she was there to wake him instead of me.
I can't say that I behaved much better. Having been his primary caretaker since his birth, I hated being away from him. This accident marked the first time we'd spent more than a single night apart. By some weird twist of misery, Ethan had been diagnosed with a hernia and his surgery was scheduled while I was at Kessler. This meant that I couldn't be with him before he went in and of course,I wouldn't there when he woke up scared, confused and in pain. During his surgery I was at the gym unable to concentrate, crying (blubbering) trying to fathom how it was that I was standing between parallel bars instead of next to my little boy.
Ethan came through the surgery just fine and as soon as he was able, came back to Kessler to visit. As was his way, he steered me away from the group and pushed me along the hall ways. because of the surgery he walked more cautiously now. We stopped by the vending machines off the rotunda to share a bag of cheetos.
"Mommy?" He sputtered through a mouthful of orange crispy crumbs.
"Yes E?"
He paused for a second, looked me in the eye and said,"You're my favorite Boo."
Anyone who knows me, knows that I think of myself as a pretty tough chick.I work hard to stay independent, asking for help doesn't come easily and I'm not exactly sentimental. When Ethan called me his favorite Boo, he actually took my breath away. I didn't know what to say so I said, "Thank you, Boo."
He nodded, hazel eyes shining and munched another cheeto.
When Ethan spotted me he rushed up, still in his pyjamas and hopped nervously from foot to foot.
"Mommy! What are you doing?" He yelped.
"I'm walking, Boo."
"Walking? You're walking? His voice sqeaked. He wanted to be close. He stood right next to me, just on the other side the walker's frame. "Mommy..Mommy," He whispered and he rubbed my arm. "It's allright, Mommy"
"Yes it is, Boo." I said firmly as we moved past the kitchen.
Every time I feel like bitching about my current situation I remember that the accident has had the most impact on my four year old son. When it happened, uninjured Ethan jumped off my lap and wailed, "It's my fault!" He was convinced he had done something wrong to cause the car to hit us.
Two days after I was taken to the hospital in Montclair, he asked his father whether I was gone forever.
Brought faithfully by my mother, Ethan visited me every day during my stay at Kessler. Every day, he would seperate me from other visitors for us to spend some time alone. He pushed me up and down the halls, stopping to introduce me to nurses and aides or whomever we happened to encounter along the way. At first he was reluctant to clamber up on my lap for fear of hurting my leg, but wanting his usual hugs and kisses he soon got over that and would settle into my lap to say goodbye. Our visits always ended the same way:
I asked as I had done since he was very young: "Are you my favorite Boo?"
"Yes!" He'd say and I'd feel his body relax. We'd sit this way for the last few minutes enjoying each other's warmth.
My mother regaled me with stories of episodes of acting out that included tantrums, sudden teary outbursts and his newest behavior, screaming "NO! NO! NO!" when he woke up in the morning and he realized she was there to wake him instead of me.
I can't say that I behaved much better. Having been his primary caretaker since his birth, I hated being away from him. This accident marked the first time we'd spent more than a single night apart. By some weird twist of misery, Ethan had been diagnosed with a hernia and his surgery was scheduled while I was at Kessler. This meant that I couldn't be with him before he went in and of course,I wouldn't there when he woke up scared, confused and in pain. During his surgery I was at the gym unable to concentrate, crying (blubbering) trying to fathom how it was that I was standing between parallel bars instead of next to my little boy.
Ethan came through the surgery just fine and as soon as he was able, came back to Kessler to visit. As was his way, he steered me away from the group and pushed me along the hall ways. because of the surgery he walked more cautiously now. We stopped by the vending machines off the rotunda to share a bag of cheetos.
"Mommy?" He sputtered through a mouthful of orange crispy crumbs.
"Yes E?"
He paused for a second, looked me in the eye and said,"You're my favorite Boo."
Anyone who knows me, knows that I think of myself as a pretty tough chick.I work hard to stay independent, asking for help doesn't come easily and I'm not exactly sentimental. When Ethan called me his favorite Boo, he actually took my breath away. I didn't know what to say so I said, "Thank you, Boo."
He nodded, hazel eyes shining and munched another cheeto.
Thursday, August 20, 2009
Kessler Diaries--6 "This is Your Gym on Drugs."
At Kessler's first floor gym, puking, screaming and crying were an everyday occurance. All patients were scheduled for three hours of OT and PT a day, seven days a week and nobody was exempt. To miss a session you had to be bleeding, dying or dead.
After breakfast,rather than wait for the nurse and her magical meds cart to come to our room, I preferred to stalk her in the halls and zero in. Sometimes I sat in a long wheelchair line waiting my turn like a Catholic waiting to take communion. Nurse Nancy, a cheerful sort with colorful animals on her uniform would discreetly recite the contents my cocktail:
"Prilosec, dulcolax, baclofen, sertraline, and how many percocet this morning."
"Two please."
And two it always was. The trick was to take the percocet half an hour before the start of the morning session and then, 10 minutes into it, I suddenly felt like trying harder and doing more. Everybody did. When the pills kicked in, people shed their inhibitions so the crying, screaming and puking would begin. The gym, a lofty open space, had smooth linoleum floors and was packed with every manner of equipment and patient. The newbies looked crumpled and small in their hospital gowns still connected to IV's. Patients who'd been there weeks or longer, looked stronger, cleaner and bored with the routine of pushing their walkers in circles around the crowded room
People were known first by the stories and then by name. There was the elevator installer who crushed his femur when his leg got pinned under a steel beam,there were men and women with single leg amputations, double amputations often often caused by the consequence of disease or war. There were people with knee replacements, hip replacements and patients with rods in their backs. There were stroke survivors playing table games in the back and gunshot survivors. I shared a mat with a young man who explained that he was pulled out of a burning car after a crash and he'd broken his legs and an arm. When I asked Sister Anna what happened to her, she was a nun, 4ft 8, always dressed in a habit that seemed slightly too large, she smiled and said, "Oh, I'm just deformed dear."
There's an odd intimacy that happens when you combine physical pain, the drugs to manage the pain and a new dramatic personal story to tell. Once the pain was finally manageable everyone, including me wanted to talk, telling our stories with subtle variations over and over again. At the gym, twice a day, we had a chance to connect these strange new narratives to our newly changed uncooperative bodies. In the gym, between grunts, fits of tears and confrontations with the unknown, we connected to each other.
After breakfast,rather than wait for the nurse and her magical meds cart to come to our room, I preferred to stalk her in the halls and zero in. Sometimes I sat in a long wheelchair line waiting my turn like a Catholic waiting to take communion. Nurse Nancy, a cheerful sort with colorful animals on her uniform would discreetly recite the contents my cocktail:
"Prilosec, dulcolax, baclofen, sertraline, and how many percocet this morning."
"Two please."
And two it always was. The trick was to take the percocet half an hour before the start of the morning session and then, 10 minutes into it, I suddenly felt like trying harder and doing more. Everybody did. When the pills kicked in, people shed their inhibitions so the crying, screaming and puking would begin. The gym, a lofty open space, had smooth linoleum floors and was packed with every manner of equipment and patient. The newbies looked crumpled and small in their hospital gowns still connected to IV's. Patients who'd been there weeks or longer, looked stronger, cleaner and bored with the routine of pushing their walkers in circles around the crowded room
People were known first by the stories and then by name. There was the elevator installer who crushed his femur when his leg got pinned under a steel beam,there were men and women with single leg amputations, double amputations often often caused by the consequence of disease or war. There were people with knee replacements, hip replacements and patients with rods in their backs. There were stroke survivors playing table games in the back and gunshot survivors. I shared a mat with a young man who explained that he was pulled out of a burning car after a crash and he'd broken his legs and an arm. When I asked Sister Anna what happened to her, she was a nun, 4ft 8, always dressed in a habit that seemed slightly too large, she smiled and said, "Oh, I'm just deformed dear."
There's an odd intimacy that happens when you combine physical pain, the drugs to manage the pain and a new dramatic personal story to tell. Once the pain was finally manageable everyone, including me wanted to talk, telling our stories with subtle variations over and over again. At the gym, twice a day, we had a chance to connect these strange new narratives to our newly changed uncooperative bodies. In the gym, between grunts, fits of tears and confrontations with the unknown, we connected to each other.
Saturday, August 15, 2009
Kessler Diaries 5--Five Funky things I've Ordered Online Since Getting Out of Kessler.
1. Chux. OMG boxes and boxes of them. Who knew there were so many chux in the world? Maybe I should call this "How I learned to relax and love my chux."
2. Several pounds of dutch licorice. Don't ask. It's black, very strong and salty. Not for the faint of heart. I am a life-long dutch licorice addict--blame my dutch parents. Twizzlers and any variety American licorice do not deserve to live.
3. A so called 'fracture bedpan.' I never thought I would learn to relax and love my bedpan either but hey, when ya can't move, that little blue bedpan is my BFF.
4. Jigsaw puzzles. I've ordered a couple of challenging puzzles to while a way the hours when I'm too drugged up to concentrate on anything else and I justcan't watch any more tv. They keep me focused and make me weirdly happy. They're also the only thing my mother will sit down for. I actually ordered them to keep her from tearing down the house and cleaning it up brick by brick. And no, I'm not one of those people who glues their puzzles together and hangs them on the wall. One of the secret delights of doing jigsaw puzzles is destroying them.
5. My arm bike. It's sleek, and quiet and is always there for me. Damn, if I could, I'd marry it. Even though I have regular physical therapy sessions as part of my rehab, it's all very sedate exercise. The arm bike forces me to get in some cardio and work up a good sweat.
2. Several pounds of dutch licorice. Don't ask. It's black, very strong and salty. Not for the faint of heart. I am a life-long dutch licorice addict--blame my dutch parents. Twizzlers and any variety American licorice do not deserve to live.
3. A so called 'fracture bedpan.' I never thought I would learn to relax and love my bedpan either but hey, when ya can't move, that little blue bedpan is my BFF.
4. Jigsaw puzzles. I've ordered a couple of challenging puzzles to while a way the hours when I'm too drugged up to concentrate on anything else and I justcan't watch any more tv. They keep me focused and make me weirdly happy. They're also the only thing my mother will sit down for. I actually ordered them to keep her from tearing down the house and cleaning it up brick by brick. And no, I'm not one of those people who glues their puzzles together and hangs them on the wall. One of the secret delights of doing jigsaw puzzles is destroying them.
5. My arm bike. It's sleek, and quiet and is always there for me. Damn, if I could, I'd marry it. Even though I have regular physical therapy sessions as part of my rehab, it's all very sedate exercise. The arm bike forces me to get in some cardio and work up a good sweat.
Kessler Diaries 4--"Full Body Inspection"
I took pictures with my digital camera as I was wheeled down the halls toward my room. The EMTs pushing the gurney weren't pleased when I pointed the lens in their direction. The automatic doors opened to a circular lobby with various wings jutting out in several directions. Near the lobby stood a fish tank with blue fish in swimming in it that I soon learned was a good landmark for when visitors got lost..."the gift shop is to the left of the fish tank...." At Kessler, the hallways were wider, cleaner and less cluttered than the hospital I'd just come from. The nurses look relaxed too or maybe that was my happy drug induced perception.
My room was enormous and flooded with light from the wall of windows opposite the entrance, space enough for a clutter of wheelchairs in the corner the usual institutional furniture, a television hooked the ceiling and a roommate. Her name was Jeanne, she arrived a day after me: 84 years old she'd had broken her pelvis from toppling backward down her basement stairs. Like me she lived in Montclair.
"What's your name?" She asked for the second time.
"Katinka." She blinked at me and looked confused. She had large sky blue eyes, a hawk nose, and long grey hair braided down her back. Her stare was direct and sometimes flashed the face she must've lived in when she was young."Think of it as a fancy way to say Katherine," I said hoping to help her along. She attempted to say my name and more often than naught after that, called me Susan. When she asked what had brought me to Kessler I told her about the accident.
And your son, he wasn't hurt?" She asked over a plateful of better than average spaghetti and meatballs that we both ate in our beds.I assured her that he was fine, not even a scratch."People drive like maniacs!" She declared and then wondered outloud about when she was scheduled for her next dose of percocet.
Soon after my arrival, an entertaining mix of medical professionals came to my bedside to introduce themselves and ask me endless of quesions about my disability, the accident, my insurance, my family and the regularity of my bowel movements. Early in the evening my PT and OT team showed up.
"Three hours a day," Tara, the PT said when I asked how much exercise I was going to get. "An hour and a half of PT in the morning and an hour and a half of OT after lunch." This sounded like a lot considering that I hadn't really stood up yet.
"When does it start?"
"How about right now?" Lorrie the OT, a rounder version of the babe PT lowered the rail on the bed. They had me sit on the edge of the bed with both legs hanging down. Tara, checked the strength in my arms, she looked at my feet and like everyone else who visited that day, asked if I could wiggle my toes in the cast. Cast or no cast I've never been able to move my toes.
"Okay, " Tara arranged a pillow under my legs when I was lying on my back again. "Tonight you're going to stay in bed and rest. Tomorrow morning, nine o'clock you start."
The last visitors of the evening were two nurses--there to perform what they called, "A full body inspection"--protocol for every new patient at Kessler. They checked my skin, all of it for bumps, bruises, any possibility of infection. The found something on of my right foot. A red mark from a blister that had already healed. "Let's keep this off the mattress the senior nurse decided, 'to make sure it doesn't get irrated" She left the room and came back a minute later with a camera to take a picure of the offending spot.
A couple of weeks later when I was about to be discharched from Kessler, another nurse pulled my chart from a cabinet and opened the binder in front of me. "Have you seen this?" She said, sounding gleeful.
It was a huge photograph of my face, me with this big sloppy, vaguely grotesque smile on my face.
"Where did this come from?" My eyes were tiny in the picture, my teeth were. well, toothy.
"The nurses took it on the night you arrived, during the Inspection. Don't you remember?"
Only I, SuperCompliant Crip, would smile like my life depended on it after breaking my leg in three places.
I didn't remember a thing.
My room was enormous and flooded with light from the wall of windows opposite the entrance, space enough for a clutter of wheelchairs in the corner the usual institutional furniture, a television hooked the ceiling and a roommate. Her name was Jeanne, she arrived a day after me: 84 years old she'd had broken her pelvis from toppling backward down her basement stairs. Like me she lived in Montclair.
"What's your name?" She asked for the second time.
"Katinka." She blinked at me and looked confused. She had large sky blue eyes, a hawk nose, and long grey hair braided down her back. Her stare was direct and sometimes flashed the face she must've lived in when she was young."Think of it as a fancy way to say Katherine," I said hoping to help her along. She attempted to say my name and more often than naught after that, called me Susan. When she asked what had brought me to Kessler I told her about the accident.
And your son, he wasn't hurt?" She asked over a plateful of better than average spaghetti and meatballs that we both ate in our beds.I assured her that he was fine, not even a scratch."People drive like maniacs!" She declared and then wondered outloud about when she was scheduled for her next dose of percocet.
Soon after my arrival, an entertaining mix of medical professionals came to my bedside to introduce themselves and ask me endless of quesions about my disability, the accident, my insurance, my family and the regularity of my bowel movements. Early in the evening my PT and OT team showed up.
"Three hours a day," Tara, the PT said when I asked how much exercise I was going to get. "An hour and a half of PT in the morning and an hour and a half of OT after lunch." This sounded like a lot considering that I hadn't really stood up yet.
"When does it start?"
"How about right now?" Lorrie the OT, a rounder version of the babe PT lowered the rail on the bed. They had me sit on the edge of the bed with both legs hanging down. Tara, checked the strength in my arms, she looked at my feet and like everyone else who visited that day, asked if I could wiggle my toes in the cast. Cast or no cast I've never been able to move my toes.
"Okay, " Tara arranged a pillow under my legs when I was lying on my back again. "Tonight you're going to stay in bed and rest. Tomorrow morning, nine o'clock you start."
The last visitors of the evening were two nurses--there to perform what they called, "A full body inspection"--protocol for every new patient at Kessler. They checked my skin, all of it for bumps, bruises, any possibility of infection. The found something on of my right foot. A red mark from a blister that had already healed. "Let's keep this off the mattress the senior nurse decided, 'to make sure it doesn't get irrated" She left the room and came back a minute later with a camera to take a picure of the offending spot.
A couple of weeks later when I was about to be discharched from Kessler, another nurse pulled my chart from a cabinet and opened the binder in front of me. "Have you seen this?" She said, sounding gleeful.
It was a huge photograph of my face, me with this big sloppy, vaguely grotesque smile on my face.
"Where did this come from?" My eyes were tiny in the picture, my teeth were. well, toothy.
"The nurses took it on the night you arrived, during the Inspection. Don't you remember?"
Only I, SuperCompliant Crip, would smile like my life depended on it after breaking my leg in three places.
I didn't remember a thing.
Monday, August 10, 2009
Kessler Diaries--3--"It's Where Christopher Reeve Went..."
There were arms and legs everywhere. Jill, the hospital Discharge Planning social worker was an enviably tall woman: one of her legs ran the entire length of my body. She folded herself into the ugly chair at the foot of my bed, smoothed her skirt over crossed legs and started talking.
"Because you already have a mobility disability and the car accident has only increased your mobility issues, you're a good candidate for Kessler. In order to be eligible for services there, you have to stay in this hospital for three consecutive nights..."
One more night in a hospital room by myself with a tv and a decent view from the fourth floor wasn't a stretch. The patient from down the hall who called out"help me! help me!" incessantly could be tolerated easily by raising the volume of yet another episode of "Law and Order."
"...We're waiting for a bed at this point." Jill checked my paperwork in the file on her lap. I found her obvious intelligence and competence quite comforting.
"How long do you think I'll be there?"
She shrugged. "It depends on how your rehab progresses. You're going to work very hard there. It's where Christopher Reeve went for rehab after his injury."
Everyone around me, hospital staff, visitors, and diehard New Jerseyites mentioned Christopher Reeve when I brought up Kessler. His adult onset disability seemed to add a certain glamour to the myth of the quality of care at Kessler. I was going to where he went--to the original facilty in West Orange not 15 minutes away from my home in Montclair, NJ. It puzzled me slightly that while everyone was quick to talk about Reeve and Kessler Rehab in the same breath, noone ever brought up that he died from the complications of a bedsore a preventable condition, I thought, usually avoid by proper medical monitoring. Since SuperCompliant Crip was fully now activated in her present hospital bed, I didn't bring up this fact for fear of starting an arguement and somehow affecting my chances of getting into Kessler.
In the morning of the fourth day at my local hospital, I was very efficiently and quickly transported, via ambulance to Kessler Institute of Rehabilitation in West Orange. I got into my room, 1086-bed 2 in time for lunch. When I asked which room Christopher Reeve had stayed in while rehabbing here, nobody knew the answer.
"Because you already have a mobility disability and the car accident has only increased your mobility issues, you're a good candidate for Kessler. In order to be eligible for services there, you have to stay in this hospital for three consecutive nights..."
One more night in a hospital room by myself with a tv and a decent view from the fourth floor wasn't a stretch. The patient from down the hall who called out"help me! help me!" incessantly could be tolerated easily by raising the volume of yet another episode of "Law and Order."
"...We're waiting for a bed at this point." Jill checked my paperwork in the file on her lap. I found her obvious intelligence and competence quite comforting.
"How long do you think I'll be there?"
She shrugged. "It depends on how your rehab progresses. You're going to work very hard there. It's where Christopher Reeve went for rehab after his injury."
Everyone around me, hospital staff, visitors, and diehard New Jerseyites mentioned Christopher Reeve when I brought up Kessler. His adult onset disability seemed to add a certain glamour to the myth of the quality of care at Kessler. I was going to where he went--to the original facilty in West Orange not 15 minutes away from my home in Montclair, NJ. It puzzled me slightly that while everyone was quick to talk about Reeve and Kessler Rehab in the same breath, noone ever brought up that he died from the complications of a bedsore a preventable condition, I thought, usually avoid by proper medical monitoring. Since SuperCompliant Crip was fully now activated in her present hospital bed, I didn't bring up this fact for fear of starting an arguement and somehow affecting my chances of getting into Kessler.
In the morning of the fourth day at my local hospital, I was very efficiently and quickly transported, via ambulance to Kessler Institute of Rehabilitation in West Orange. I got into my room, 1086-bed 2 in time for lunch. When I asked which room Christopher Reeve had stayed in while rehabbing here, nobody knew the answer.
Friday, August 7, 2009
The Kessler Diaries 2- Confessions of a Medical Survivalist
When faced with with a medical emergency I morph instantly into Supercompliant Crip. I become almost obnoxiously polite, I take medical advice, I bond with staff, I crack jokes, I make 'em love me. In other words, I do what I have to do to ensure that my life will not end anytime soon. I'm a shameless medical survivalist.
By the time my x-rays were taken, I'd been in the emergency room of my local hospital for hours. They'd transferred me the ambulance gurney to a hospital bed of the same width. I waited along with my restless son and irritable husband to an examination room in order to wait to be seen by the orthopedist on call.
"I can give you something for the pain until the doctor comes," said Mark, the physician's assistant who was graying in his mid thirties from too many shifts at full moon. "But it won't be too strong until we know what's going on with your leg. Would you like something for the pain now?"
"Oh yes, please," I said beaming him my best smile.
Mark returned to the room with a huge needle. "Little pinch," he said.
"I like needles," I said and he laughed.(Score one for me)
Waiting for the pain to pass,I made a jigsaw puzzle with my son, I calmed my husband down, I made phone calls in case we needed a babysitter for Ethan. The pain didn't go away. It got worse. I waited. It hurt, I realized, to lie down.
When the PA came back into the room I asked, "Mark, do you think would be possible to raise the bed please? I'd like to sit up. If that's okay."
"Oh sure," said Mark. He yanked up the bed with a quick professional crank of his arm. "Better?"
"Much. Thank you." It was better. I could see the nurse's station outside my door, and I had a better view of Ethan's face. He looked hungry. My husband looked hungry and freaked out.
"Your x-ray looks pretty bad... The PA let his arms hang over the railing of the bed. "You've broken your leg, the tibia in three places. It's called a spiral fracture."
"Well," I took a breath, "that explains the pain." Mark laughed. (Score: two for me)
"On a scale from 1 to 10, what's your pain level?" Little did I know that in the coming months I'd be asked this question at least 5 times a day.
"Eight, " I said.
"That bad?" My husband seemed genuinely surprised.
"Yes," I said pleasantly.
Mark said, "What would you like? Tylenol?"
"Extra strength?" I countered. No wait, he was joking. (That's one for his side.)
"Morphine?"
"No, it makes me sick."
Both Ethan and my husband were watching our negociation silently but with some interest.
"Percocet?" I said, hoping that I didn't sound too excited.
"One or two?"
"Two. Please?"
"Sure."
"Thank you."
The physician assistant was gone again. This time before he got back I sent my family home. They needed rest and so did I. I gulped down two percocets with a swig of water. Here we go, I thought. Accepting narcotics meant I'd be admitted soon. Taking two little pills, meant putting my entire life on hold for the forseeable future: finding a job, getting a divorce, learning to drive, even caring of my son.
A nurse walked in to make a pillow splint for my leg.
"Did you know that the last time I took percocet for any length of time, I loved it so much I wrote love poems to it?"
The nurse chuckled. Her laughter bounced off the walls in the little examination room. Score another one for me. I settled back into my pillows and waited for the pain to disappear.
By the time my x-rays were taken, I'd been in the emergency room of my local hospital for hours. They'd transferred me the ambulance gurney to a hospital bed of the same width. I waited along with my restless son and irritable husband to an examination room in order to wait to be seen by the orthopedist on call.
"I can give you something for the pain until the doctor comes," said Mark, the physician's assistant who was graying in his mid thirties from too many shifts at full moon. "But it won't be too strong until we know what's going on with your leg. Would you like something for the pain now?"
"Oh yes, please," I said beaming him my best smile.
Mark returned to the room with a huge needle. "Little pinch," he said.
"I like needles," I said and he laughed.(Score one for me)
Waiting for the pain to pass,I made a jigsaw puzzle with my son, I calmed my husband down, I made phone calls in case we needed a babysitter for Ethan. The pain didn't go away. It got worse. I waited. It hurt, I realized, to lie down.
When the PA came back into the room I asked, "Mark, do you think would be possible to raise the bed please? I'd like to sit up. If that's okay."
"Oh sure," said Mark. He yanked up the bed with a quick professional crank of his arm. "Better?"
"Much. Thank you." It was better. I could see the nurse's station outside my door, and I had a better view of Ethan's face. He looked hungry. My husband looked hungry and freaked out.
"Your x-ray looks pretty bad... The PA let his arms hang over the railing of the bed. "You've broken your leg, the tibia in three places. It's called a spiral fracture."
"Well," I took a breath, "that explains the pain." Mark laughed. (Score: two for me)
"On a scale from 1 to 10, what's your pain level?" Little did I know that in the coming months I'd be asked this question at least 5 times a day.
"Eight, " I said.
"That bad?" My husband seemed genuinely surprised.
"Yes," I said pleasantly.
Mark said, "What would you like? Tylenol?"
"Extra strength?" I countered. No wait, he was joking. (That's one for his side.)
"Morphine?"
"No, it makes me sick."
Both Ethan and my husband were watching our negociation silently but with some interest.
"Percocet?" I said, hoping that I didn't sound too excited.
"One or two?"
"Two. Please?"
"Sure."
"Thank you."
The physician assistant was gone again. This time before he got back I sent my family home. They needed rest and so did I. I gulped down two percocets with a swig of water. Here we go, I thought. Accepting narcotics meant I'd be admitted soon. Taking two little pills, meant putting my entire life on hold for the forseeable future: finding a job, getting a divorce, learning to drive, even caring of my son.
A nurse walked in to make a pillow splint for my leg.
"Did you know that the last time I took percocet for any length of time, I loved it so much I wrote love poems to it?"
The nurse chuckled. Her laughter bounced off the walls in the little examination room. Score another one for me. I settled back into my pillows and waited for the pain to disappear.
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