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: ______________________________________

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.

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.

Saturday, November 14, 2009


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.

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.


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.)


"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."


"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.

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.

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.

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.


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."

Friday, July 24, 2009

The Kessler Diaries--Not Part of the Plan--June 26, 2009

Part 1

This is how it happened: I was riding scooter with Ethan on my lap. He takes ownership of that spot, my lap behind the handlebars of my scooter He doesn't like it when I let another kid sit there. He lets me know that he's the one who belongs there. We were riding Ethan and me, moving through a hot June day. We'd just hit the local toy store for the air conditioning and a new puzzle. We were heading to a neighbourhood Starbucks for more air conditioning, an iced coffee for Mommy and for Ethan, the biggest chocolate chip cookie we could find.

We waited at a curb cut to cross the street. The coffee shop was on the opposite corner. This particular corner is always busy, traffic comes at you from all directions. Waiting for traffic to pass is another opportunity sneak in a hug, to enjoy Ethan's 'toddlerness' I wasn't in a rush to cross the street.

I looked over and I saw it coming, a small red car, a toyota maybe, slowly turning the corner in my direction. I saw that it was an impossibly tight turn.The front end of my scooter was barely jutting into the street an inch, hardly more The car turned, grazed my scooter and as the driver completed the turn, my left leg got caught between a car tire and the edge of the scooter. The car kept going, my leg was pulled, the foot twisted outward and somehow disengaged from the car. The scooter didn't tip. Ethan was still nestled on my lap. He was completely untouched, unharmed. I screamed.

I yelled something obvious, something like, "YOU HIT ME!" The car came to a stop about 30 feet down the road. A young girl got out, hardly more than a teenager and said, "I didn't see her. I didn't see her."

She didn't see me. I saw her. Ethan saw her.

My left shin burned. Ethan jumped off my lap and moved easily to the sidewalk. He looked at my face and burst into tears. "It's my fault!" He wailed. Pedestrians gathered around us. The sidewalk restaurant that shared this corner was buzzing with different accounts of what they had just seen. People were crowding in. Someone rolled up my left pat leg for a quick inspection. A welt was forming above my shin at the front of the leg. A woman said, "It looks like it might be a bad sprain. I worked in the medical field so I know about these things."

I prayed for a sprain. I had an instant picture of what my life would become if my leg were broken. It felt absurd that I who already had cp, a mobility disability would be saddled with a second mobility disability. The rehab, the loss of independence, the time it would take to come back. Who would take care of Ethan? What ever this event was meant to teach me, I could live without the lesson. This was not part of the plan.

"Do you want to go to the hospital? A cop asked.

"Wait. Wait." I wanted everyone to shut up so I could think. So I could breathe. 911 was called. I called my husband to tell him I was heading to a local hospital. He would meet me there. He would take the scooter home.

When I was lifted into from the scooter to the stretcher heard the crunch of bones, they rattled like dry piano keys. I didn't want to think about it yet. The stretcher popped up and slide into the ambulance. Ethan was lifted in with me. He sat close by and asked on of the EMT's to help him with his seat belt.

As the ambulance yelped down the street, I looked at Ethan who tried to reach for my hand. He loves ambulances with a boy's passion for anything that moves on wheels. Ethan, big-eyed and quiet stared out the the window. Hadn't we done this recently? He had been with me when I had fallen, split my chin and gone to the ER for stitches.That should've take care of my quota of medical mishaps for at least three years.

But then, Ethan was completely uninjured. He was alive and sitting across from me and I was alive. We came close to disaster: had this driver travelled with any kind of normal speed, the injuries would've been much worse for both of us. I guess dying wasn't part of the plan either; or if our survival was just dumb luck, I'd take that too.

Sunday, June 21, 2009

Switching Sides or How I Learned to Relax and Love My Rehab Counselor

For the twenty years that I lived in New York City, I managed to live ‘outside the system.’ Some part of me was proud that I didn’t avail myself of services, vocational and medical offered specifically to people with disabilities. Not using the system somehow was proof of my unshakable independence. As a Canadian citizen living in the States, I was not always eligible for services and found that I was often turned down services even if I was eligible-- like Para-transit for example. I’d go for my Para-transit interview, ready to answer any and all questions and quickly realized that I would have to lie about my level of functioning—play down my abilities in order to be found eligible. This pissed me off. My interviewers would commended me on my mobility and then NOT give me what I needed to get to work every day.
Years later, now that I’m in NJ things have changed. I realized that if I wanted to get anywhere on my own without a car, Para-transit was not just an option but a necessity. Since the birth of my son, several years ago, like many people with mobility disabilities, I lost a measure of my ability to walk during the pregnancy and have been slowly rebuilding my strength to pre-pregnancy levels. This means that I use a scooter (which I treat like a motorcycle)much more than ever before.
I went in for my New Jersey Para-transit interview with my scooter. I think that in the eyes of my biped interviewer this clearly sent a message that I was disabled person in need of transportation assistance. This time, I didn’t have to lie because most people agree the transit system in NJ sucks. Buses rarely come more than once an hour and, in my area, there are few safe curbs upon which a pwd can make use of the lift at the back of the bus.
For the first time in my life I was quickly granted services and was finally part of a ‘system’ albeit in New Jersey and not New York.
After using the NJ Para-transit system, called AccessLink, I finally had to admit that maybe getting a drivers license was a good idea. This meant that I would like millions of pwd’s, have to use hand controls.
Let me state now that I have always been terrified of driving, convinced that I would ‘spaz out’ behind the wheel, lose control of the car, and kill myself or someone else. Although everyone complains about Access-a-Ride in New York City, the actual city buses work well for pwd’s and with a little practice I could get around pretty efficiently. After all, pedestrians rule in NYC. Few people I knew actually drove or even owned cars.
In New Jersey, EVERYBODY drives. Buses I notice are close to empty much of the time.
In order to learn to drive in an adapted car, I needed to go further into the ‘NJ system’ and go for an evaluation at the Department of Vocational Resources in Newark. I would be assigned a real live Rehab counselor. I couldn’t help but smile at this prospect because as someone who has worked in social services for many years I’m accustomed to being on the other side of the table working with and for pwd’s. Would I look at myself differently being on the receiving end of services? Yep, we with big egos admit to having these ambivalent feelings. Wait, I thought I could turn this eval into an interview opportunity since I’d been looking for a job anyway…
I revamped my resume and dusted off my interview suit.
On the day of the appointment, I followed my assigned rehab counselor, Miss Rose, past a long row of office cubicles and into an office that was empty but for a table and chair. I didn’t take my scooter this time; I decided to walk with my crutches. Miss Rose wore a well-pressed cream colored suit and had the unhurried walk of someone who knew she was a part of a huge bureaucracy and there was, therefore no reason to rush. She smiled easily. Maybe this wasn’t going to be a paperwork horror show after all.
I sat as she examined my file silently for what seemed like forever.
“Katinka…” She pronounced my name slowly and carefully. She turned over my application and seemed to read it with deliberation that was almost painful.
“You have a Master’s degree?” It was more of a statement than a question.
I produced the original piece of sheepskin. She reviewed it wordlessly, and set it aside.
“You’re married?” I produced proof of my husband’s income which I knew would likely knock me out of the running for having any driving lessons paid for by the state.
“You have a child,” she said.
“Yes,” I said, unable to hide the pride in my voice. “He’s about to turn four. He’s healthy and extremely active.” I added that last bit because many bipeds automatically assume my child must be disabled because I am.
She nodded. Slowly.
“Why do you want to learn to drive?”
I explained that even in this rotten economy I’d been searching for work and in NJ unlike NY must jobs required some travel and a valid driver’s license. “Besides, I feel isolated often having to rely on other people to go where I want…”
Miss Rose nodded again.
“I brought my resume,” I said, and put it on the table between us. She started reading and I saw her smile again.
So I told her everything, my work history, my disability my reluctant move to the suburbs.
Miss Rose listened, took notes, smiled, nodded and didn’t say very much. I had to admit it was almost fun switching sides of the table.
At one point, she leaned forward and said,” there’s a bunch of people retiring from this office in a couple of months. Do you want to work here?”
“A state job? I said, “Sign me up!” We both chuckled.
I left the Department of Vocational Resources feeling as if I had gained an ally—which was not what I had expected. I found out a couple of weeks ago, that despite my husband’s income, the state is willing to pay for my driving eval which I’ve already scheduled for late July.
I knew that I had come prepared for my interview with Miss Rose, that I had done my homework, gathered my paperwork and pitched my strengths at her to the best of my ability. This made me wonder about all the pwd’s who may not have the same self-advocacy skills, or whose disabilities may make communication more difficult. Do their rehab counselors welcome them with the same unflappable openness as Miss Rose? How many of us are sitting at home isolated through no fault of our own?
I’m still terrified of driving but that doesn’t mean I won’t give it a shot. And when Miss Rose calls to check in, I can’t help but smile when she says in her unhurried drawl “honey, I think I found the perfect job for you. Go get a pencil, I’ll wait.”

Saturday, May 23, 2009


I fall often. When I fall, I can’t get up by myself. As a life-long swing-through quadruped, I’ve always relied on the assistance of biped strangers to help me up. Over the years, I’ve been both grateful for and amused by the swift actions of the bipeds around me. I’ve fallen off subway platforms, in the midst of oncoming traffic (scream as loud as you can if this happens to you). I’ve slipped on ice, polished marble, on piss, on banana peels, yes banana peels and on the grease dripping from garbage bags left in front of fast food joints. I’ve been knocked down by passing shopping bags, ploughed down by bipeds who don’t see me and strange people who do. I’ve tripped on leashes, on other people’s canes, lost my balance during standing hugs, tripped up and down the stairs. During a fall, I’ve lost my shoes, countless bags of groceries, several pda’s, my underwear and my shirt. While on the ground I’ve been blessed, in both in English and Spanish, spit on, yelled at, sung to, photographed and kissed. Rarely, and I do mean rarely, I’ve been ignored, stepped over and passed by. From the sidewalk, I’ve admired a blue cloudless sky, nights full of stars, the undersides of birds, faces of dear friends and the gleaming edges of skyscrapers.
To get me to my feet requires two strong, fearless bipeds or one firefighter whoever comes first. Firefighters are premium because they are both experienced in such matters and strong, which makes getting back on my feet a quick and marvelously efficient experience. The optimum firefighter will get me up in one easy heave, only lets go of me when my crutches are properly planted and dusts me off before moving on. He or she usually has more pressing things to do, so they don’t stop to chat.
The inexperienced biped has been known to panic in my horizontal presence. I’ve watched them scream, cry and faint at my feet. I’ve comforted and calmed many a biped from my lower vantage point. “Here’s the rule, I say, “If I fall and I’m talking by the time I hit the ground, I’m fine.”
The nubie will try in vain to grab me by the arm and tug, or worse self-injure in an effort to help. Two inexperienced bipeds will pull me up only to let me teeter between them in some twisted trust exercise. They will flag down too many people for the task and the place where I’ve fallen instantly becomes a mosh pit, as I am passed along many pairs of well-meaning hands.
What works best with the inexperienced bipeds is to offer clear, specific step by step instructions:
“First, you’re going to give my crutches. Then, you’ll get me up to a sitting position. Each of you will grab me from the under the arm and on the count of three…” If I remain calm they become calm and getting back on my feet is a straight-forward experience for everyone involved. On several occasions, bipeds have come running up to me breathlessly, “Hi! I helped you up five years ago on the corner of 8th Street and avenue C.” Do you remember me?”
I’ve fallen with such regularity over the years, that I like to imagine myself to be something of crip stunt woman.I’ve learned to relax my muscles as much as possible during a fall to lessen the impact. Usually before the inevitable sequence begins a warning bell goes off in my head, maybe it’s more like a flash but in that split second I’m able to prepare myself or find ways to break the fall. That instant of preparation is key to keeping my injuries to a minimum.

When my trusty inner-alarm fails to go off, I get hurt. There’s no time to anticipate anything which usually means I won’t be talking by the time I hit the ground, or as was the case recently, I passed out.
While walking with my husband and son in alphabet city, on the way to my favorite Mexican restaurant my crutches jammed into a slightly raised incline in the sidewalk and I fell forward. I didn’t have time to relax or roll or even break the fall. My chin took the impact. In that moment it felt as if the entire front of my body turned to glass and shattered. I remember prompting myself to breathe and when I couldn’t breathe, I fainted.
I was ‘out’ for about 30 seconds if not less. I remember dreaming but I don’t remember the images. I heard many voices and then one voice. A woman repeated, “you’re gonna be okay, you’re gonna be okay.” My eyes opened and I saw a woman kneeling over me. She held my hand, and kept saying, “you’re gonna be okay.”
She was maybe in her mid thirties; her brown hair grazed my face.
“What happened?” I asked. My jaws were aflame.
“You fell,” she said. ‘You passed out.”
“Oh yeah,” I said. I could feel blood dripping on my face and from my mouth.
“You’re gonna be okay,” she said still holding my hand. My husband was sitting on the sidewalk opposite her. My son was standing nearby, up against a wall. Over the shoulder of the woman, I saw a ring of bipeds, about twenty of them, standing around me.
“She’s bleeding,” one of them said.
“Don’t move her,” said another. Another said, “Get something for her head.” I heard the click of half a dozen cell-phones opening.
I caught my son’s eye as he walked toward me. He’s four years old. He said, “Red stuff coming out of your mouth, mommy”
“Yeth,” I said, my face felt as thick as cement thick. The bipeds were talking to 911.
“What’s your name?” I asked the woman who was still holding my hand. She told me her name, but I don’t remember it now.
“I heard you, I said to her.” When I was out, I heard you talking.”
She nodded.
“Thank you for bringing me back, I said.
“Oh,” she said slightly flustered, you’re welcome.”
I had time to take in the gathering of bipeds. I was surprised, considering the urgent energy of New Yorkers that nobody walked away. This posse of protection waited with me. I had no view to the evening sky. I couldn’t move. I couldn’t quickly recruit two innocent bipeds to haul me up and get on my way. Decades of dedicated falling and this was the first time I couldn’t take control. No teacherly directions, no “up on the count of three.” I lay on curled on my side, my crutches strewn somewhere out of my line of vision. A wave of energy, heat meeting thought, rippled and spread over me.
Empathy. Empathy. This is empathy, I thought.
I could feel as these bipeds looked directly down at me, the active, crowded, singular energy it took to imagine this fall. They were feeling the impact, absorbing the pain, trying to pushwish it away.
“Ambulance is coming, one of them said.
“Should we wipe her face?” The question floated.
“No, no, no…no…” the posse echoed.
Thank you, I thought in return. We waited for the ambulance to arrive.

Saturday, April 4, 2009


As of April 1st, I' started the fourth month of my workout. In this short time, I've been to the Y on average, four times a week. The receptionists greet me when I come through the door, they take my coat, check my bag and make a request on the PA system for a trainer to come help me set up for my particular set of exercises. A trainer arrives to make sure that the seat of the upper body ergometer is at the right height, he or she places my crutches in just the right spot against the wall to insure that I can reach them when I'm done on the bike. In the beginning I could barely complete twenty minutes on the ergometer before dragging my excessively sweaty self home to recover with the help of numerous glasses of water and a short nap.

Now it's forty minutes on the ergometer. And then a trainer meets me across the way in the circuit training room, to help me on three of the ten machines. A trainer sets my legs into proper positions, adjusts the weight levels that I can't reach, and repositions my natural crookedness as much as is humanly possible. I sweat and grunt and each time, I can't believe how much it hurts and how much, truly, I hate exercising.

Has my body changed? Haven't lost much weight yet which was, vanity notwithstanding the original goal. But oh, I do feel stronger. For years I yearned for my pre-pregnancy mobility: to regain the sense that I could take on city blocks and now pedestrian-less surburban neighbourhoods without feeling overwhelmed and desperate with exhaustion. 4 months in and once and a while I get a flash of the old upper body strength.

At the Y my fellow patrons hardly look at me, none to this day comment on what I do or how I do it. In the beginning the trainers treated me as a kid glove novelty. I was told to take it easy, to rest between exercises, they apologised while gingerly reaching to lift my leg. Now these months later the staff all make eye contact with me. They wave at me in the hallways, they greet my son by name, sometimes they stop to chat. While the range of what I'm able to do is limited by biped fitness culture, what I can do, I do I hope, with a certain noticeable single-mindedness. There are many senior citizens who transfer from their walkers to the treadmill, yet I've seen no other quadrupeds with permanent disabilities at the gym. I suspect there aren't many of us. This fact that makes me at once proud and sad. More of us should be there alongside our biped counterparts doing what we can in our way to make our bodies strong.

The other day after a particularly rigorous tour on the ergometer, I caught the eye of a passing trainer.

"Six miles!" I announced as he crossed my path. I expected a "Hey, that's great! Maybe spy a glint of surprise in his eye. Instead, he paused and looked me up and down.

"Six miles?" he said.
I grinned back at him. It was my best distance to date.

"Well," he said, looking me up and down "You're not sweating enough."

What? Where was the good for you! The praise that I expected tinged with that's amazing considering your disability...

The trainer said, "You need to worker hard. Sweat more." He turned and walked away.

I reached for my crutches and headed for the circuit training room.Ouch! I thought. And then it came to me To him, I wasn't the novelty Y geek with a disability. To him I was just another client. He was doing his job and I was doing my work out. Figuring he was right, I added an extra five pounds to the dreaded Ab machine.

Monday, March 9, 2009

Samson revisted

Ola called to tell me that John, my father, is in the hospital. This news was not entirely surprising since his diagnosis of congestive heart failure. This time round, my brother Vidar called Ola because he was worried about John--- he couldn't leave work. Vidar asked Ola to check up on him.

She went. She found him weak, dehydrated, barely able to breathe. She called 911. He's been there for a couple of days now, slowly regaining his strength. The doctors told him that he has emphysema along with the other diagnosis. "But I don't smoke!" He kept insisting. The doctors were confused. Why would a man who claimed not to smoke have such an advanced case of emphysema? They were about to do a battery of tests when Vidar, ever the advocate, pulled a doctor aside and explained that in fact my father smoked dope. A lot of it. Every day. Dope in a pipe, to be precise. Never cigarettes of any kind. Talking on the phone to Vidar the other day, he estimated that John smoked the equivalent of a pack of cigarettes every day for forty years.

Here's the real surprise in this situation: Ola continues to visit him in the hospital. This man who beat her, terrorized her, threatened her children, stood 6ft 1 and 250 pounds to her 130 pounds, verbally abused her for years and from whom she ran away, calls to give me updates.

"I cut his hair today"

"You what?"

"I cut his hair."


"Because he asked me to."

I didn't quite know what to say. In my mind I have this picture of him sitting in a hospital gown, in a room he shares with with three other people. He sits on on one of those bland institutional chairs, not moving while Ola combs through what's left of his blond hair, measuring how much to cut with his comb and her fingers. My father never goes anywhere without a comb. She tells me that he's skinny, that his muscled bulk of which he was once proud, that hardly contained his rage is completely gone. He wheezes and doesn't talk much.

She tells me that she put an extra hospital gown on him to keep the hair from going down his back.

"Why are you doing this?"I can't help but ask this again. She gives me a different answer: "I'm doing it for Vidar." Vidar she says, is very worried about him, and she felt that her son needed her support.

"Where are Natasha and Toshi?"

"They visit too." She says. "They're really good kids." Natasha and Tosh, are my much younger half brother and sister. Tasha the eldest was born when I was 18.

Ola and I sit in silence on the phone.

She says, "I take care of him, like I would any sick person" It feels," she searches for a word, "distant?"
She recounts with a certain amount of glee, "I walked with him down the hall, and his ass was sticking out of his hospital gown. He was embarrassed when I told him so I made him put on another hospital gown backwards to keep him covered."

Again, a picture: John shuffling down a florescent lit hall, Ola clutching the gowns and walking patiently next to him. She has, at various times in my life walked me down a hospital ward in exactly the same way. There must be some satisfaction for my mother, to be the one a lifetime later, that has the physical power. Only two years younger than he, at 74, she's limber and fit, and despite the occasional ache assuaged by her yoga practise, is at ease in her own skin. My father is no longer a threat. Now he's compliant, grateful, even.

In her most recent update I noted a shift in her tone. "I kept suggesting he take a shower you know because he stank. And finally he did. Vidar brought him some clothes and I said I would wash the ones he came in with,

"That's nice of you."

"He doesn't wear underwear." She said with disgust. "He never did." She mutters something. I can hear her remembering. "And he said something awful to the orderly. Who was Polish. Something about Polish people and Jews and I said to him in Dutch, 'You better shut up.' He's bitter to everyone," she says.

We're quiet on the phone again.

"I don't think I want to go back again, she says. Not as often anyway."

"No", I say, "not as often."

Ola will call again when he leaves the hospital to give me another update. And I get off the phone, thinking about my expired passport and how I should give the Canadian Consulate a call in the morning. It's my turn to visit.

I see Ola standing behind John, his head bowed, the sound of scissors at his neck. They talk in Dutch. His shoulders slump slightly as the hair collects by her feet.

Thursday, March 5, 2009

Ruminations on Charlie

I've been thinking about the strong urge I felt these days to adopt a new cat. It would be me easy to say that I've lived with multiple cats for twenty years and now that they're both dead, it's only natural to want to fill the 'cat gap.' But that's not the whole story. Truth is, lately, I've felt lonely.Don't get me wrong, I'm busy with Ethan and the daily ordinariness of things, the jobs searches and rewrites and attempts to come up with yet another draft of this stage of my life, my 'busy list" is endless. I'm bed-lonely: the simple pleasure of sharing a bed, waking up with someone. It's the marital bed, I miss: knowing that I'll wake up with the same person. Since our 'NO PORN IN FRONT OF ETHAN' confrontation the tension between M and me has eased. Last night he went into the city by himself (something he NEVER would have previously done.) He's taken E to a kid's concert today (also a new activity) and lately I see him eye the 'for rent' signs that are cropping up all over Montclair. He's coming to realize that life separate from me may not be calamitous, that he can create a strong bond with Ethan and still have a life that includes the time for all of the interests that we never shared. All of the cats are named or renamed was they arrive at the shelter.I saw Charlie within the first five minutes of walking in.Apparently, he's their newest addition, a grey polydactal tabby who was dumped into and then rescued from a pack of feral cats. Most of the shelter's occupants(all cats) were out of their crates, playing like wild things, bunting me and wandering away. Charlie, being the new guy was looking on from his crate, alert but not anxious. The staff figuring that I would relate, presented to me their hardest cases, the cat with the feline equivalent of Bell's palsy, the black female who cooed constantly like a pigeon the fat white house cat with no tail. I walked around the small room a couple of times and kept stopping in front of Charlie. Other people walked in, talking baby babble to the kittens, cuddling them. Charlie and I simply regarded each other. He is, my instincts tell me, a mellow fellow. The adoption process is weirdly complex. I filled out the paperwork, and apparently wrote an answer that red flagged me as a liability. I was grilled about my cat history, fur from all sides of the room, falling on me like snow. One woman questioned me to the extent that I finally said to her, 'Listen, do you want to give me a new application to fill out? I'd be happy to change that answer." "Oh no, she said, "I'll pass on to our board of directors." They'll get back you." If I'm deemed fit to be a custodial parent to one homeless cat, I must then bring Mand Ethan to the shelter so that they can be approved.Dear God, you'd think they be grateful I expressed an interest in their four-legged tenants. If they refuse me, I may be forced to flash my recently sharpened claws and point out to this staff that this shelter is woefully inaccessible--I had to be carried in order to exit the building--- and that they are in fact, breaking the law. Do you hear me hissing? In a few days, I'll drag M to the shelter and Charlie or maybe some other cat will come home with us. Soon, I'll have another, faster heartbeat pumping at my feet. That's what I'm looking for: a warm presence to take up just a little bit of space on the cold side of the bed.

Tuesday, March 3, 2009

Welcome to "My Fabulous Adventures"

Fellow Adventurers:

I've been working on a memoir for a long time now. It's called, The Fabulous Adventures of a Four-Legged Woman. As I'm nearing the end of my rewrites, I find that I have material I like but that doesn't belong in this particular book. My goal with this blog is to collect the extra material, and new work and put it on there for people to read, comment on and generate discussion. I suspect that the stories on this blog will make up much of the content of the next book. No matter what I write the same themes seem to come up again and again: I write about sexuality, body image, mobility, and motherhood, (among other things) all in the context of the disability experience.

Warning: The content of many of these blogs will be raw, deeply personal and unfinished. Perfection is not my concern right now. I won't be giving much background on these pieces but I suspect that when enough of them are posted you'll get a clear picture of what's going on.