Tuesday, June 24, 2014

They tried to make me go to rehab, but the man said 'no, no, no'

I've had the Amy Winehouse song circling my head for hours, not that the rehab route recommended for me entails the kind of rehab she imagined: this would be more raffia mat making and relearning how to chop carrots than intense conversations with tattooed Burroughs-wannabes. But there is a spanner in the works. On Wednesday, the spanner was gravity which pulled me, somersaulting and spiraling, down every bit of the wooden staircase, smashed my head into the walls on the way down and shattered two of my cervical vertebrae; today, the spanner is the insurance company. Despite evaluations and recommendations by two physical therapists, an occupational therapist, nursing staff, a physiatrist, and a team of doctors and neuro-surgeons, there is a man out there somewhere, sitting in an office with a database of macro-quantitative evidence who will decide whether my needs make me a cost effective proposal for the intensive rehab everyone else has recommended. He won't be a medical expert, he has never met me, he isn't even willing to talk with me and all our communications must be conducted through my case manager, but he's calling the shots, making the final decisions. He's the Man (I've heard about 'the Man' in the movies, and now here he is in my weird and filmic real life narrative - faceless, sinister, and unjustifiably powerful).

Because of the damage done to my nerves and spinal column during the fall, and because of the impact of fusing 4 vertebrae together with a mixture of metal, bone fragments and glue, I have fairly constant pain in my lower arms and hands, limited mobility, hyper-sensitivity to any kind of touch, and a prognosis which suggests I might, or might not, be pain free in the next 12 months. Intensive rehab provides the opportunity for me to work intensively on my hands and arms, to promote flexibility and strength, and to develop new ways for me to do the things I used to take for granted. Without intensive rehab, my recovery will be much slower and I might not reach the same potential for movement, strength and independence. But - let's face it - this isn't really about me. It's about the money and the returns on investment and the whole hickory-dickory-dock workings of the capitalist machine. In the UK, with the wonders of the NHS which the US can't even manage to comprehend, the decision would probably be made by a hospital manager with an MBA, in the US the decision will be made by an insurance clerk. And I don't understand - can't understand - won't understand - why the decision can't be made by the medical experts who know about these things rather than the experts in Prince project management, powerpoints, and cost charts.

But, at the moment, I am somewhere very special. Maybe wards like this exist in the UK, but I haven't experienced anything so good in either the US or the UK. A team of nurses and nursing assistants provide phenomenal care. Holly, who has worked on this ward for 23 years, tells me it has always been a good place to work: well managed, well staffed and well regarded. The level of patient care here exceeds anything I'd ever imagined. Some staff are young - Kevin, who exudes a calm constancy, who wants to become a transport medic working with critically ill patients, and who has happily developed his tea making abilities so that each morning I have the perfect cup of tea; Annie, whose first day working independently coincided with my first day on the ward and whose creative thinking provided me with a range of toys - bandages and crinkly plastic and warm bowls of water - which alleviated the pain in my hands; Allison, who stuck inspirational quotes around my room; and Chris, whose dry humor and absolute integrity have allowed me to maintain my dignity in some very undignified moments. Staff have drawn on their experience and expertise to make me nests of pillows so that I might sleep, been willing to understand my reluctance to take pain meds and found alternative ways to keep my pain levels manageable, and they've talked with me - soon realizing that talk is my favorite medicine. They've shared aspects of their life stories, told me about their lives in Vermont, about their dreams and ambitions. Because they are neither underpaid nor over-worked, they have the space to do this and I would argue to the nth degree that this is a valuable part of patient care. They've sat with me through the dark hours and they've shared my celebrations of the things I can do today which I couldn't do yesterday. They haven't offered false hope, worn platitudes or indulgent sympathy; they haven't been too busy or too tired; they've just given me time and space to work through it, to feel it, and to keep on going.

I wanted to tell you about the food as well - locally grown, freshly produced, cooked to order - but I can't type more and this has already taken many hours. So I'll end with a bit more Winehouse - "I got lots of time, but the money man thinks I'm fine... They wanna make me go to rehab, but He says 'no no no'. "

4 comments:

  1. I'm so glad you're in such a lovely place. My fingers are crossed for The Man to make the right decision, and soon. Much love xxx

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  2. We're still shocked about your news here in Manchester. It's wonderful to be able to read your beautifully-written blog. All our love, xx

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  3. So fine toread your wonderful writing. Sorry that the topic is so close to the bone (arrghhhhh), but I so appreciate the thought and time and effort you put into communicating with written words, such a joy to read such well crafted work. Thank you.

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  4. Hope things are going okay, Zoe. I haven't seen you since the literacy research in practice days, but I hear about you from Bonnie. I wish you a full and quick recovery. Warm wishes, Sheila

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