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.

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.

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.

Kessler Diaries--9--Final Entry--Woman with CP Held Hostage by Auto Insurance Company"

When I was told it was time to leave Kessler and go home I thought it was too soon. I wanted more time. I lobbied for extra days.

"...But I still have trouble with transfers." (From the bed to the wheelchair. From the wheelchair to the toilet. And so on. ) And I can't take showers yet--And getting dressed is impossible and--"

Kessler doctors and physical therapists and occupational therapists and social workers were quick to reassure me that I would get the services and the medical equipment and supplies I needed at home.

I wasn't convinced. How was I to duplicate the level of care that I had received at this rehab center? I loved working out three hours a day and being pushed by the PT's and OT's to do more. Besides, I'd been told by other patients that I'd be sent home with a limited number of pain meds Thirty pills? That couldn't possibly be enough to continue the rehab and home or anywhere else, I argued. (Oh beloved percocet. Please don't leave me...")

Kessler staff asked what I thought I needed in order to feel more secure about going home.

I wanted a small hospital bed that offered options to change positions and heights. My own bed was too high to be manageable with my leg in cast up to my hip. I needed a wheelchair that was better fitted to me than the old crappy one I used at home. The wheelchair needed decent legsrests a good seat cushion and other basic stuff, like functioning brakes.

"Done." said Kessler staff. Apparently, my requests were standard and generally covered by insurance, in my case, and according to New Jersey law, my husbands' auto insurance.

Kessler staff got on the phone to put in the orders. Paper work was faxed and confirmed. A discharge date was chosen and I was scheduled to take an ambulette after lunch was was the usual procedure.

Okay, I thought, I can do this. My mother was staying with me during this transition and I'd be getting an aide in the mornings and PT at home. No reason to be nervous. Best of all, Ethan and I would finally be together again.

On the appointed day, I was washed, dressed, packed and ready to go. After breakfast I added a few more pieces to a puzzle I'd been trying to finish during my stay. My roommate and I exchanged phone numbers and promised to meet for burgers at Pal's a coveted local steakhouse. I thanked the aides, nurses, doctors, PT's OT's, social workers and food service staff. I said goodbye to fellow Kessler rehabers. I dutifully filled out a Kessler Satisifaction survey. I was, in short, Satisfied.

And then I waited.

By the time the pick up time for the ambulette came and went, I began to suspect that something had gone awry in the plans. My doctor's case manager dropped by and paused to admire a nearly complete puzzle.

"We're having issues," She hesitated not quite catching my eye. Mariam was a tall, dark, highly organized woman with a gentle smile and an upbeat skip to her step.

Issues?

We've been on the phone with the insurance company.They've given us paperwork that is completely new to us and---

We? I thought. Who's We?"

"And the Insurance Company refuses to authorize a wheelchair and a hospital bed for you."

What?

"I thought these were standard items."

Mariam nodded vigorously. "They are. We have no idea...Everybody's working on this. Me, the social workers, Dr. K, the PT's and OT's..." Her voice trailed.

Ah, there's the 'We.' "What's everybody doing?"

"They're on the phone. Yelling. They're faxing documents, writing letters."

"So what should I do?"

Mariam threw up her hands. "Have lunch." I'm sure we'll figure this out very soon."

When the lunch tray was picked up, aides came to my room and stripped my bed. In fact they moved my bed to another room. They mopped the floors and took out the trash, removed that pictures E and friends had left on the walls. In minutes, there was no trace of my existence in room 1086.

Several days before at home, my mother and a neighbour had dismantled my inaccessable bed and carried it to the garage. Furniture was moved and the bedroom was cleaned in anticipation of the hospital bed.

I took a final spin around the first floor.

I waited.

The ambulette never showed up. My doctor did.

"You're not going home today."

"But I'm scheduled--"\

"I know."

So now I didn't have a bed here or at home. It would take hours to move and reassemble my own bed.

I tried again.

"But isn't the insurance company spending more money on me by keeping me at Kessler than by sending me home with a bed and a wheelchair?"

Doctor K shrugged as if to say, "Go figure." We sat silently for a minute as if to let the stupidity of this situation settle between us. "I'm sorry, " she said.

"What should I do now?"

"Whatever you want."

I made phone calls to tell my family to say that I'd be going home tomorrow, not today. Bed 2 reappeared along with clean sheets and a fresh bouquet of flowers in the vase by the window.

I went to the gym and worked out. Hard. I lifted weights and heard the echoes of all the people, the OT's, PT's, case managers and doctors who would be on the phone on my behalf, til end of business today. I cursed the insurance wonk who read my file and made the decision about where I was to sleep that night. I hoped his/her ears were ringing, his/her face was burning while I did another twenty minutes on the arm bike.

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.

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.