Monday Morning

It began as a fairly typical Monday morning: Nathan left at silly o'clock (at the start of each week his taxi picks him up at 4 am which, in our past lives, would have constituted Sunday night rather than Monday morning) and I was kept awake by the loud rattle of the furnace. I'm cautious about criticizing my furnace in this blog as it took a long period of industrial (in)action last week, but it shouldn't sound all furious and fired-up during the early hours of the morning: we keep the thermostat turned low while we sleep and heap duvets and blankets on our bed instead.

The moon was stunningly beautiful when I went downstairs to investigate - a crystal edged crescent hanging in the East, with the sky already pale enough to see the outline of the mountains - and the inside of the kitchen windows were also crystal-edged with frost, the olive oil was frozen, and the fresh herbs sat in glasses filled with ice. It took me a little while to make the connection between the panicking furnace, the frozen kitchen contents, and the window which had come loose from its frame when Nathan tried to fasten it shut at some point during the weekend.

By 5.30am, I had taken the window unit to pieces, cleaned off the snow, run my hands under warm water until my fingers would bend again, and refitted the window so that the outside was outside and the inside was inside (and never the twain should meet). By 5.45am, I'd lit the wood-burning stove in the hope it would give the furnace a rest.

The kittens don't like the cold and refuse to go outside. Instead they have transformed my house plants into an assortment of climbing frames and outside toilets, reminiscent of some of the less salubrious playparks we used to live near in London. Before making breakfast, I was cleaning cat shit out of plant pots, sweeping soil off the floor and complaining loudly about my lot in life to the dog. The dog doesn't do well in cold weather either. He's a feisty little rescue dog who likes at least 2 hours exercise a day, but that's simply not possible at the moment so he spends his days barking to go out and barking to come in. Being inside worries him because he knows the chipmunks and glove monsters who live in the trees outside will stage an attack on our house if he doesn't keep them in check; being outside worries him because his feet start to freeze and he can't stop shivering.

So, I was complaining, the dog was barking, the kittens were running amok, the furnace was rattling and then I found the letter. Some of you might know from my earlier blogs that a bone graft was used in the surgery to fuse my broken neck. There among the titanium pins and screws are fragments of bone taken from a donor. I didn't know this was going to happen before my surgery - at that time our thoughts were on living wills and the possibility of my permanent paralysis - but as soon as I learnt about my donor, I wrote a letter to his family expressing my thanks and explaining how significant the donation was towards my recovery. I wrote that it was thanks to the donor that I am able to hold my children and, believe me, I have held my children very close since my fall.

I didn't know my letter had been answered until this morning. I was irritable and cursed as the envelope wouldn't open, assuming it was junk mail promising me a guaranteed lottery win, cheaper car insurance, a new career, free pants, or more of the same when what I really needed was a new furnace, double-glazing, better behaved kittens, and an all weather dog walking solution.

My donor's name was Danny. His wife's letter told me about their 40 year long happy marriage and their 6 grandchildren whom he loved to take fishing, about their foster children and his career as a pipe foreman. She wrote about her gratitude that I'd been able to benefit from his death and said: 'Even though I miss him, I know that a part of him lives on, and for that I am grateful.'

Pat, Danny's wife, also wrote that she'd never really considered the implications of being a donor before and I can understand that. When I die I want my body to be sent off to the nearest teaching hospital so they can admire my surgeon's handiwork, but I know it's important to other family members to be buried in woodland, or cremated and scattered in significant places. Whatever you want though, and I hope it's far off for each and every one of you, perhaps you might want to register as a donor at the US Organ Donor webpage or the NHSBT in the UK.

Sometimes we read things - see things - live things - which create a hiatus in our lives, completing altering our perspective on what is happening around us. It's still Monday morning, the dog is still barking, the kittens continue to cause their own special brand of chaos, the furnace sounds as though it might not make it through the day, and the children were late to school - but I've got this letter in my hand and it reminds me that I'm here, that I'm living it, and that makes everything different.

Disability

I've been taking skiing lessons. Downhill, cross-country, Nordic - it's all the same at the moment as the terrain is necessarily flat while I learn to balance, and balancing is something I now find myself unable to do. The downhill coaches have been supportive (pun unintended, although their support has sometimes been needed whether it's the physical grabbing of my arm to help me back onto my feet or a timely shove to keep me upright), but we've reached a point where they have suggested I might want to consider their Adaptive Ski program. 

 The Adaptive Ski programs in the Smugglers' Notch and Stowe areas are amazing. Specialist instructors use a variety of equipment to enable a wide range of individuals to be able to ski. I've seen blind skiers making rapid descents with their guides, and teams of instructors supporting children in wheelchairs as they come down some of the other slopes. I saw a woman with a zimmer frame/walker type device riding the chair lift, her skis dangling, her walker swaying precariously over my head, and a massive smile on her face as she passed (I'll confess I was relieved she didn't try to wave). Both resorts are fierce believers that skiing should be for everyone. I recently read an interview with the parents of a severely autistic girl who was learning to communicate through skiing: the sense of movement freed something inside her and allowed new kinds of communication to come through. That's amazing, isn't it!

But I'm struggling with the notion that I might be best suited to an adaptive program. I don't think of myself as disabled - but then who does? Perhaps the issue is less to do with how I see myself and more to do with how society sees me and the things I try and do. We live in a society which exists around an assumed polarity between people who are 'normal' (that idealized standard of health and ability, independence and functionality) and people who are 'disabled'. But that's a clumsy definition of disability. The concept of disability (and any physical therapists' attempts to measure it) emerges from an understanding of 'activity limitations'. This begs the question of what kinds of activity it is reasonable for an individual to expect to be able to engage in. The last time my 'disability' was measured by the physical therapist, I scored highly. 

My most recent x-ray, showing the
fusion of 4 vertebrae and the metalwork
I'll wear for the rest of my life.

If you saw me walking down the street, you probably wouldn't notice I have any disabilities. I walk like one of those 'normal' people - unassisted and balanced and able to easily navigate to where I want to go.  Looking in from the outside you won't know about the metalwork in my neck, the absence of sensation in my left foot (a definite benefit in winter weather), the fact that I can no longer remember what's it like to wash my hands without wanting to cry out in pain. I can safely drive a car. Friends sometimes notice I can't turn towards them while we're talking, but it's easy to set up furniture so that's not a big deal. I did meet one woman who told me she knew I'd broken my neck because I moved like an automaton and kept staring at a fixed point in space, but no-one else has said anything so I think she was just being rude. 

My point here is that, in relation to being able to walk about, cook and eat meals, and chauffeur the children, I don't have any real activity limitations. Should that be enough? Shouldn't that be enough? Given that I broke my neck in two places, I suspect many people reading this will say 'Be grateful for what you've got. You're fine!' 

But I live in skiing territory. I watch people of all ages, shapes and sizes wander around in their skiing equipment, with the haze of anticipation of that day's snow in their eyes or the post-ski adrenalin-reds coloring their cheeks. I've joined skiing classes with people of all ages, shapes and sizes and watched them progress from beginner slopes to chair lifts while I ski in circles and fall over. I'm friends with a network of women in their 60s and 70s, the 'Mountain Mamas', who hike during summer months and ski during winter. There is a great sense of celebration when they turn 70 because ski lift tickets are free for seventy year olds and over. I want to ski with them. I'm 41 years old, and I can't. 

In spring, I want to ride my bike. My physical therapist is working with me towards this goal, but he's been pragmatic about the unlikelihood of me being able to ride the bike I have / the bike I want to ride because my neck won't allow the flexion needed for me to look where I'm going. I might be able to ride a 'sit-up-and-beg' bike, but I live on the side of a mountain. City bikes don't do well on steep gradients and mud tracks. 

I bought Nathan a pool table, and I'm able to take easy shots when the balls are near me. If I try to angle myself for a long shot, the pain is so severe that I get double vision. In those circumstances, I tend to aim for the middle of the 'two' balls and hope no-one notices the difference, then I make an excuse and say I'd prefer to be doing my knitting.

In summer, I want to get back in a kayak and explore Lake Champlain. I've always been a fairly good kayaker - I have good upper body strength and the skills have always come easily to me. My surgeon has told me I might be able to kayak for up to an hour at a time, but I'll pay for it the next day. 'Paying for it' is medical speak for more pain. I have had 5 completely pain free days since breaking my neck. I no longer expect to have a 'pain-free' day when I wake up in a morning. I used to imagine all day kayak trips with my daughters and Nathan, followed by camping out on one of the islands. It's a nice daydream, but probably needs to be shelved next to the one where I can sing like Nina Simone. 

I don't mean to sound sorry for myself because I'm not. I'm glad to be alive and I feel tremendously fortunate to have the wonderful life I am able to live. But I am learning to recognize I have limitations, that I'm not going to be able to easily pick up many of the things I was able to do before my fall. 

There is a conversation which has recurred a lot over the past few months. People who know me a little and know of my accident look at me with eyes filled with compassion and say, 'Are you better now?' 

What answer can I give? If better means back to 'normal', back to how I was before the fall, then no. I'm not better and never will be. But then, as another friend recently pointed out, 'normal' is a setting on the tumble drier. 

Perhaps the better question should be 'Are you happy?' And the answer is unequivocally 'yes, I'm happy and I'm fortunate and I love my life...' but I wish I'd bloody well taken skiing lessons last year rather than waiting until now.