Saturday, June 28, 2014

Moving on

The progress I have made through my recent therapy sessions is remarkable to me and almost incomprehensible to my nursing team. It has been a tremendous and terrifying experience to be here in rehab, and now it's time to go home.

Rehab has also been my first taster of being a 'disabled' person. Compared to many of the patients here, my disabilities are minimal and, hopefully, temporary; but I have had glimpses into what it means to be seen as a disabled person rather than as a 'Zoe':
- riding in a wheelchair, I have watched people speak over my head as though I am not fully present in the room, or they have drifted away in the middle of our conversation and I haven't known because I can't turn my neck to look at them.
- I move with obvious awkwardness at the moment, and strangers have tried to second guess what I might need without asking - because they obviously know best because they're normal, right? It has seemed as though they are afraid to speak to me because they don't know what might happen next - how upsetting it would be for them if I was to have, say, a speech impediment or a mental disability!
- I have been laughed at in the cafe for spilling food down myself and found myself playing the clown as a way of minimizing my embarrassment.
- When I was unable to find a bag in my room, a volunteer told me I was probably hallucinating because of my pain meds (I'm not on any pain meds, but sadly didn't have enough nous to ask her about her own drug regimen).
- I have been stripped and dressed by male and female nurses enough times to no longer have any modesty: my body has become some kind of medical anomaly rather than something which belongs intimately and beautifully to myself alone.

I am glad I came to rehab. I've had the opportunity to work intensively with occupational and physical therapists for 3 hours a day, and I have had a room of my own where I have been sleeping for 15 hours a day. I've been well-fed and struck up some wonderful friendships, particularly with the hospital rector who pops by almost daily to chat with me about libraries, and his work in Palestine, and a trip to England he took back in the 1970s. Thanks to technology, I have been able to skype family and friends and read all the wonderful messages people have posted and emailed to me since the accident. I have worked my body until it is so tired I have cried, and then I've woken up the next morning ready to do the same again. (But let's keep a sense of perspective: I'm bench-pressing a walking stick rather than weights; walking up and down stairs rather than sprinting on a beach; trying to pick up a coin with my fingers rather than glorifying in some challenging new yoga pose.)

The activities have been good, but this is a surreal new world. Until yesterday I was not allowed out of my room unsupervised and - never having been good at asking for help - I spent long hours standing by my door listening to the sounds of the ward. There is one nurse who has not needed to visit me. She works with the badly disabled patients. She speaks in a loud, slow, patronizing voice which rings down the corridor, like a melody played over the top of all the television channels blasting from patients' rooms. I am sure she is very good at her job, and I don't doubt she provides a service I could not do well, but I cringe as I hear her speaking about bowel movements and the color of pee in the same tone that well-meaning grown-ups sometimes use with very small children. Perhaps her approach is necessary when a person's mind has been affected by their accident; perhaps she has wonderful successes with patients who would otherwise become constipated and dehydrated. But I can only think that, a few weeks ago, the person she's now speaking to used to be like you, like me, like everybody else. Then a few of us fell down stairs, or fell off motorbikes, or were felled by strokes or brain hemorrhages. We're all struggling with that: everyone here is in pain, caught up in a complex mix of thankfulness at being alive and mourning for the loss of how their lives used to be. Some of the people here will never walk again or live independent lives. And the lesson for me, having had the privilege of this insider's view, is that we're still like you, like me, like everybody else. It's just the rest of the world which sees us differently.  

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'. "

Tuesday, June 10, 2014

Butler Lodge trail

The thing to remember - the thing I tend to forget - is that I now live on the side of a mountain; a large panoramic wrap-around kind of a mountain, as opposed to the triangular point-y sort I used to draw as a child. The Abenaki Indians called Mount Mansfield "Moze-o-de-be-Wadso", which translates as "Mountain with the head of a Moose". Moose have big heads, and this moose likes to spend a lot of his time with his head in the clouds.

Last week, I joined a large group of women - 'the Mountain Mamas' - who walk together in summer, and ice-climb or x-country ski together in winter. The average age of the group is somewhere in the 60s, and I have found my role model for retirement! We pranced up the side of the mountain to the Taylor Lodge (one of the many bunk houses supported by the Green Mountain Club), and the women unpacked floral tablecloths and served up cakes and rhubarb syllabub. The conversations were wide-ranging - many of the women having arrived here in the 1960s and 1970s to live intentionally alternative lifestyles - and the overall experience was exhilarating, enjoyable, and slightly surreal. I loved every minute, felt humbled by their many kindnesses and hospitality, but realized I need to improve my fitness levels! The great thing about living on the side of a mountain, of course, is that one doesn't need to pay to attend a gym.

This morning, I took the dog for a walk on the mountain. While Thursday's walk was filled with talk, I walked today's trail in silence. I have always enjoyed walking by myself; alone, one becomes more aware of the noise of each bird, the shifts in smell as the deciduous forest gives way to conifers, the rhythm of one's breath, the sound of one's own heartbeat. My own heartbeat was loud enough to drown out the birds because the Butler Lodge path was a beast: when I hoped the path would level it became a set of wooden steps because the gradient had become too steep to support a trail; when my quads were burning and the sweat was falling like rain down my face, the blue markers directed me straight up a rock face.

It was worth it. Hard hikes are always worth it. At the top, just before the Butler Lodge appeared out of the cloud layer, the temperature dropped and the sweat running down my face cooled. At the gym, I'd often end my workouts in the steam room, hoping there would be no gaggle of women chatting inside. This was the inverse of a steam room: a feeling of being baptized in cloud, rewarded and refreshed by something I'd worked hard to achieve. The dog, of course, was fine and I suspect many of the Mountain Mamas would not have even broken into a sweat....

Inside the Lodge, an open paperback book had been left face-down on the table and someone's roll mat was laid out ready for their return. I was glad they weren't there. For ten minutes or so, it was just the dog and me, sharing my water and watching the clouds whiten the air. Then we headed back down through the woods, watching the air become brighter, the trees change color, and the pathway gradually level out as we left the Moose Mountain behind.

Monday, June 9, 2014

It feels like falling in love...

I am waiting for someone to tap me on the shoulder, tell me there has been a horrible mistake, and order me to go home. Someone else should be living in this house.

For a start, there are the mountains. Proper jaw-dropping, awe-inspiring mountains just sitting there on the horizon, waiting to interrupt my unpacking by taking my breath away whenever I lift my eyes. Someone else - the person who should be living in this house - would know the routes through these mountains already. They'd be the kind of person who has climbing ropes, detailed maps, a kaleidoscopic knowledge of first aid, and calf muscles which never get tired. I have an old school bag of Maya's, packed with a tiny foil bivouac for emergencies (thanks to Sam), a miniature first aid kit, a water bottle and a spare dog leash. Each time I walk up the lane to the State Park I feel like I should apologize to the Park Rangers: my entire appearance screams amateur, and my knowledge of US State Parks owes more to Yogi Bear than it does to the Green Mountain Club.

Then there is the forest. Quite a lot of forest. Our forest to caretake and maintain. Now I can recognize the hemlocks and the sugar maples, the bracken and the bramble bushes... but the person who should live here would know every plant without having to take a book out of the local library (and the person who should live here would be able to find the local library without having to use their SatNav!)

We also have more than two acres of meadow and, I suspect, the person who should live here wouldn't let the grass grow into a mess of bright yellow dandelions and wild orange daisies. I have mown the area around the house 3 times since we moved in, but that is primarily due to a Sleeping-Beauty-esque fear that we will otherwise wake one morning to find our house has been swallowed by wild forest and thorny bushes. Perhaps I should be more diligent, but my enthusiasm tends to wane after the first two hours behind my little petrol-fuelled hand-push mower and it always seems that the grass I cut at the start of the day is as long as the uncut grass by the time I put the mower back in the shed.

Inside, there are definitely signs that this is a house for grown-ups, and I'm not sure I've reached that point in my life yet. There is a laundry in the cellar, complete with shiny white machine and shelves and washing lines strung up next to an extensive collection of boilers and pumps and radon extractors. There are built in closets and solid wood floors and the kind of American fridge-freezer that someone of Nathan's height could live within. I have piled the pamphlets about the various workings of the pumps and the systems and the shiny white goods next to my chair, but they already have several half-drunk mugs of cold coffee sitting on top of them. The person who should live here would have enjoyed reading them, and could have made sense of more than the first page of each.

But I'm not sure that the person I feel should live here could ever love this house in the way I do. They'd be too busy being grown-up to stare with wonder at the fireflies doing their torch semaphore to one another in the darkness, or to whoop at the large child-sized Barred Owl who watches us from the bottom of the garden. They wouldn't abandon the weeding to follow the common garter snake as he slithers along trying to find the 'just right' rock on which to sun himself, or to call the girls out from their bedrooms to admire the bright orange lizards. They would probably have known exactly what concoction of nectar attracts humming-birds to the feeders, but would, therefore, have had none of the fun of trying to find out. And they wouldn't unpack their books onto the floor because they want to reread them before putting them on the shelves.

But, until the person who should be living here shows up, we'll continue wandering around with those big cheesy smiles you only tend to see on people at the start of a romance. Our preferred soundtrack for the past 10 days has been Oh Honey's Be Okay... bright, poppy and almost obnoxiously happy. And why ever not?