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.