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.


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."


"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.

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.

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.

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.

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.

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.)


"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?"


"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.

Monday, August 3, 2009

Paratransit Blues

The moment I realized my mistake I called the Reservation Department of Accesslink, New Jersey's paratransit system.

"Good morning," I said. "I'm calling because I made an error in the address I gave when I requested a ride yesterday." (I am nothing if not polite) I accidently inverted the numbers. The address is NOT 527 Valley Road. It's actually 572 Valley Road.

"ID number."

"Excuse me?"

Your identification number."

I rattled it off. The woman on the other end of the line paused for about thirty seconds.

"Katrinkia?" She said, rendering my name unrecognizable.

"That's me. Can you change the address so I can be dropped off the at the right address today."

"No." She didn't even hesitate, this monotone reservationist.

"Excuse me?"

"Once the address is in the computer , we can't change it."

"But I'm not scheduled for a pick up for another two hours." This seemed to me plenty of time to change the address in the computer and inform the driver who was supposed to pick me up. How long could it take? Maybe a minute. Not even.

'No,' said the reservationist.

"What am I supposed to do?

Again, not a pause. She said, "You can be dropped off at 527 Valley Road, or you can cancel the ride. If you cancel now, that constitutes a No Show.

I'll get a No Show? You mean like a penalty?"

"Yes," she said. She sighed. She was getting impatient or bored maybe.

"I was off by two numbers and I realized my mistake. You are absolutely unwilling to change 2 numbers in the computer?"

The reservationist sighed a bigger sigh. "Once the numbers are in the computer, they cannot be changed."

"Fine, " I said. "Thank you very much."

She hung up.

Once I was tied down in the van, I explained my dilemma to the driver.

The driver said, "I was told to take you to 527 Valley Road. 527. I put the address in the GPS. 527."

I didn't bother to explain again. She could deliver me to 527.

I paid my two dollar fare. We drove.

From my house, it takes about 15 minutes to get to my desired destination. I was going to Starbucks. Starbucks: my office, my writing place, my oasis of strong coffee. This was only my second time out of the house since being discharged from Kessler Rehab, I wanted my goddamn iced grande no whip mocha. Even the wrong address wasn't going to stop me.

As we approached the neighbourhood, we started looking at the numbers.

"I see, 525 Valley Road," the driver said. It was an auto body shop. "I see 526..." An apartment complex. "I see 529 Valley Road," An enormous Supermarket with adjoining parking lot. "There ain't no 527 Valley Road."

She was right. No 527 in sight.

"You see that building over there?" I pointed a block to my left. "That's a Starbucks. I can't make to Starbucks on my own no problem. Just let me out here."

"I'm supposed to take you to to 527 Valley Road," she said.

"That address doesn't exist."

"I know!" The driver stopped herself from shouting.

"It was my mistake. I called it in. Just drop me off here." I could almost smell the coffee.

The driver called the reservationist. "There ain't no 527 Valley Road, she said."

Now the reservationist paused. She took her time. She said, "There is no 527 Valley Road?"

"Not that I see," the driver said.

"Not on either side of the street?"

"Nuh huh," said the driver.

Silence. We waited. I cursed all paratransit systems around the world. I get cranky without my triple shot iced mocha.

"Bring the client home. Have her pay the fare again and bring her home."

Neither the driver nor the reservationist could see my shaking fist.

"Don't think I won't register a complaint!" I hollered. To hell with politeness.

"Uh huh" said the driver as she turned the van around.

Back at home, at the appointed hour I called the Reservation department of the Accesslink paratransit system in New Jersey.

"I said, "I'd like to request a ride for tomorrow afternoon. I'd like to go to 572 Valley Road."

It was a different reservationist. "One moment please, " she said and put me on hold.

She was back in 15 seconds. The reservationist said, "I see the address in our computer as 527 Valley Road. Are you sure you don't want to go to 527 Valley Road?"

I took a deep breath."Yes, I said. "I'm sure."