Arts: of losing, living and writing
Emerald green, Kildunan blue
by Sally Frank and Gail Low
The alarm goes off at 1:45am and we blunder about in the dark doing all those necessary things that precede leave-taking: sorting out rubbish, adjusting the central heating and carrying all the absolutely essential, hitherto completely overlooked, items of luggage into an assortment of carrier bags to take to the car. At this point, Tim and I are both really ratty but he has the edge, having been up and down the path three or four times already this morning, not to mention the twenty or more trips last night. At last, we are on our way. The roads are empty; only one car going the other way. We board the six o’clock CalMac MV Clansman at Oban for Coll and Tiree and, as with all our ferry journeys, I sleep, read, knit and eat bacon rolls. We arrive in Tiree at 9.05am.
It is wonderful to be back, despite the fact that it is freezing cold and the 40mph wind expected tomorrow is building slowly. Archie and Peggy, elderly crofting neighbours, drop by to say hello. Archie keeps his hat on, though he is eventually persuaded to sit down after I set a chair for him in the doorway of the kitchen. He can't remove his wellies or his over-trousers without a lot of fankle. On the few occasions that he has done so, the over-trousers roll down into twin pools over the tops of his boots, and he sits apparently legless but with a pair of toe-caps sticking out.
Most mornings, we have a routine: a Co-op shop, a bit of cleaning and tidying. We go to Susan’s house in Scarnish for tea on Saturday and they come to us later in the week. Today the weather is fantastic and Tiree is magical: blue sky that extends forever, melding with the sea, and hardly any breeze. There are perfect days here and we've just had five of them on the trot now, with the wind switching from south to north. A cloudless blue sky with clear sunshiny light. At 10:40pm, the dusk is only starting. It's pale pink and purple, and full of bird calls: corncrakes crexing, peewits and oystercatchers, and juddering snipe.
Friday, the weather is grey and cold. I am struggling with the medication as usual, either stiff or dizzy, sometimes both stiff and dizzy.
At fifty one, I was formally diagnosed with Parkinson’s disease. What precipitated a visit to the doctor was a strange difficulty with my left hand. I couldn’t change gear when driving ‒ found it difficult to get the gear stick into place. We changed to an automatic car but we also made an appointment to see a neurologist. Eighteen months on the waiting list; after various tests on my arm and shoulder, I finally met the consultant. He did some further tests: I had to walk along a line, push against his hand and other funny little tasks like touching my thumb and forefinger together, on both hands, as fast as possible. He looked at my medical notes and then said, “Write down your name and address”. I wrote as instructed, and as I wrote, the letters became smaller and smaller. The consultant looked up from his desk and said, “You’ve got Parkinson’s”. He added, “Micrographia. That’s one of the major symptoms of Parkinson’s.” “But Parkinson’s is something that only old people get,” I said. He replied, “No, it’s not. You’re at the youngest end of the normal distribution age of onset. So you’re not unusual.” And that was it.
May 10th 2001, I left the hospital in a state of complete shock.
Parkinson’s disease is a chronic (long-term) neurological condition. It is progressive and symptoms worsen over time. It is named after Dr James Parkinson, who first described the condition in 1817. People with Parkinson’s disease experience a loss of nerve cells in the part of their brains responsible for controlling voluntary movements. This part of the brain, a small cluster of cells deep in the centre of the brain within an area called the basal ganglia, is the ‘substantia nigra’. The nerve cells in the substantia nigra usually produce a chemical called dopamine which helps transmit messages from the brain to the rest of the body via the central nervous system... As these cells are lost, people with Parkinson’s disease experience a loss of dopamine; the messages controlling movement stop being transmitted efficiently.
The disease progresses slowly. After the diagnosis had sunk in, I felt I had to pack in as much as I could before everything came to a head. I retired early. Ironically, getting Parkinson’s enabled us to buy Kildunan, our home on Tiree. At first, things were no different. I drove up and down to Oban on my own, charged around the house. I had an abnormal amount of energy. Even when I slept fitfully (I don't sleep at all well now), I had lots of energy. Kildunan became an urgent project. I had to get everything ready before I wound down completely. I remember the summer evenings’ bike rides, bird song, night-time noises, the cows walking about the fields, the corncrakes... hearing all the birds. I still love the stillness and being on my own, though this is now sometimes tinged with fear.
The art of losing isn't hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster
I take the drug, L-Dopa, which converts to dopamine by my body. But L-Dopa, like serotonin, is also a mood regulator. When I’m short of L-Dopa and crash, movement isn’t possible. These are my "off" periods and I go from feeling on an even keel about everything to shutting down in absolute despair. There’s a concrete barrier between me and my body, between me wanting to get up and not being able to, looking at my foot and willing it to move, but not being able to make it do so. My body is just leaden. I can't always speak, or I don't speak properly. Sometimes people treat me as if I’m mentally disabled or stupid. I was once told by the therapist to put my hands up to indicate to company around me that I want to speak ‒ like in schoolroom ‒ but opportunities don't always happen. Sometimes, I hold all sorts of sentences in my head, and want desperately to say them but the openings never come and so I am silent and the conversation around me moves on. Every little thing is simply exhausting. Often I am angry and frustrated. In my "on" periods, when the drug kicks in, I can do little things for myself. Friends and carers are well meaning; “I'll do that for you”, they say, taking the Tupperware from my hands to unclip it, but it matters to me that I do what I can when I can. Even so, it takes so much longer just to do the smallest task. In my "on" periods (which can vary greatly), I rock back and forth, back and forth. These movements are not involuntary, Tourette-like tics but they are very reassuring to do. They remind me that I can control my movements. I have a wheelchair now. I thought it might be liberating, not having to depend on others, but it hasn’t been that way. The wheelchair is more difficult to drive than I thought, and having to pull up your trousers in an undignified manner doesn't help. Besides, the paintwork on door frames has suffered.
Medication gives me a small window of freedom from immobility; I can get out of bed and feel relatively normal. Other times, I can lie in bed and know that I'm not going to be able to move. I need to have things all within arm’s reach. It's almost as if I need a personal slave to do my fetching and carrying for me.
Parkinson's disease is a progressive, degenerative neurological condition that affects the control of body movements. It causes trembling in the hands, arms, legs, jaw, and face; rigidity or stiffness of the limbs or trunk; slowness of body movements; and unstable posture and difficulty in walking. Early symptoms are subtle and occur gradually.
It happens when the neurons (nerve cells) that normally produce dopamine in the brain gradually die. The death of these cells leads to abnormally low levels of dopamine.... Parkinson's disease is a chronic, progressive illness, and no drug can prevent the progression of the disease.
Lose something every day. Accept the fluster
of lost door keys, the hour badly spent.
The art of losing isn't hard to master.
Before Parkinson's, my life was completely different. I had a part-time job as an Educational Psychologist. I also managed a team. Initially, we were involved in dealing with children with difficulties and assessing them early for a school placement. Quite often, we had to battle against medics who were also advising parents about their child’s potential and progress. And that could be quite disheartening. Yet the work was, at times, also very rewarding.
I loved dancing, and used to teach Swingnastics classes. It came about because I went to an exercise-to-music class one day (this was the seventies and a new phenomenon). I found it great fun and decided to start a class. I always used to feel wonderful after these exercise classes. Sometimes I would leave work thinking that I was too tired to teach Swingnastics but I would go home on a high. Music and movement... and dancing. It was great ‒ that fitness enabled me to walk with Tim on over more demanding terrain.
One summer holiday, before the illness, both of Tim and I walked down the north rim of the Grand Canyon with friends, Graham and Pat. We were so naïve and inexperienced. We had permits to camp for three nights. We assumed there would be a range of shops where we could buy provisions but there weren’t, so we ended up just buying enough pot noodles to last us three days. We then had to be been reminded to carry water by the Park ranger. We parked up somewhere near the entry point ‒ the only car in the car park at five o’clock in the morning ‒ and off we set, four friends. The men in the group had big bags of water, which they carried on their backs to stash half-way down so we might have a water supply on return. Off we set, down the canyon. Hiking down you’re actually moving through geological history, walking down through layers of beautiful rock, through different landscapes and different geologies, all with such beautiful names: Kaibab limestone, Bright Angel shale, the Red Wall, Surprise Alley. When we got to our first designated camping space, it was breathtaking. We turned a corner, and there was Thunder River - a huge waterfall bursting from a cave in a vertical drop. There were cottonwood trees with the tiniest leaves fluttering in the breeze. It was such a lovely place. We hadn’t seen a single soul on our journey down.
On the second day of our walk back, there was a major thunderstorm which lit up the whole canyon with lightning. There we were, the four of us, standing on this ledge with a tarp over our heads, looking down on the Grand Canyon in the rain, thunder and lightning. All the terror and beauty, and the enormity of the place. Pat and Tim were sandwiched between me and Graham. We looked at each other and smiled broadly.
I hold onto these images in my mind before falling asleep. Graham died recently of cancer. The surgeon said he was the fittest man he’d ever done surgery on.
Then practice losing farther, losing faster:
places, and names, and where it was you meant
to travel. None of these will bring disaster.
These last few years, I’ve been losing many things I cared about. I keep making a list of all the things I’ve lost since I had Parkinson's to give to the consultant in order to get him to take me seriously.
- Being able to knit
- Being able to exercise
- Being able to read a book with sustained concentration
- Dancing to music
- Having a good sleep
- Having a sex life
- Having a social life
- My self-confidence
- My independence
Even losing you (the joking voice, a gesture
I love) I shan't have lied. It's evident
When I was still working, I remember one young mother who had a very disabled child, multiply handicapped, blind and deaf. She was in her mid-to-late twenties, very attractive, and always immaculately dressed. She didn’t work. There was little family support and she cared for this small child all on her own. Most people thought that there was no hope for the child but she continued to try to stimulate him. She had so few material resources but she just battled on. I admired her fortitude and tenacity, her dogged desire to encourage her child’s development. She became quite knowledgeable about his condition. But she needed help of a personal kind too. Social services really needed to take on board her issues as well as the child’s. Her life was really quite small but I never saw her upset.
I don’t have to crash to get angry and frustrated. I can feel very, very sorry for myself.
the art of losing's not too hard to master
though it may look like (Write it!) like disaster.
Who is writing this "I"? In one of our earlier conversations, I said to Sally, "You should write about having Parkinson's; between the medics and the carers, I can see how you are feeling more and more diminished. Parkinson's - both the illness or the medical language of diagnosis or treatment - doesn't define all of you." She tells me that she doesn't have the energy or the sustained motor-coordination to write a long piece. We talk about what we'd like to see in the essay, arrange a time for an interview and then record it. I collect past emails, interview transcripts and, later, lay them all flat on my dining room table to take stock: a mosaic of paper that I am to gather up into a vivid life. There seems to be no other way to narrate except in first person, preserving as much of her melancholy and frustrations as well as her wry sense of humour.
Then I start to write, joining up texts, inhabiting her "I", knowing all the time I am not her, but trying to work with the grain and timbre of those words and experiences. When I email an early draft to her, I write, "I've tried to preserve your words and the emotions as much as I could, but have also compressed, shaped and quilted together to make the writing more seamless." In her reply she seems bewildered and, perhaps, also cross. "Did I think this?", she says. I apologise, but am secretly also affronted. "But this is you!", I want to shout, "everything I've written you have more or less said." Between more or less is, of course, an abyss. The art of losing – Sally’s generous gift of ceding control of words, is, of course, my gain.
How can I make a shoe fit for Sally to don and strike her way across the page? Stitching together fragments of Sally's previous emails, Elizabeth Bishop's moving poem, “One Art”, our conversations and discussions about the medical discourses on Parkinson's, editing and then showing the work to her, have made for awkward and testing times. And yet they have also been clarifying in all sorts of ways. I don't have Parkinson's, though I can, of course, imagine. Yet pretending as if I could, leads to an ethical and aesthetic quagmire born of inequities: an able-bodied person writing 'as' someone who is suffering from all the debilitating symptoms of Parkinson's, assembling, selecting and shaping a voice that isn't always hers to affect.
This kind of bearing witness reduces the one you speak 'in place of' to... silence. Gayatri Spivak warned us of this a couple of decades ago. And acknowledging these problems won't make any of the difficulties go away either; yet surely the risk must be worth to witness the trauma, emotional intelligence, the fortitude and core stillness in a friend I admire... who feels that she is, at times, simply lumpen flesh. This “I” should neither seem transparent nor act as a smokescreen, but must be a witness, an interlocutor, and must make space for readers. Despite our frank exchanges, it is only recently that I have picked up the courage to ask the questions I had evaded previously in our friendly, everyday exchanges. Even now I do it obliquely...
If having Parkinson's can be described a colour, what would it be? It’s dark ‒ black, dark grey-black, tinged with orange. Orange because it is a fiery extreme and elicits those feelings of rage, frustration and despair in me. And on days that you find life bearable...? I think it’s emerald green, Kildunan blue. Every now and then I get so very angry and frustrated. But it’s not always possible to attach that to a feeling about Parkinson's ‒ the illness is a part of me now. When I was first diagnosed, I refused the obvious “What have I done to deserve this?” or “Why me?” question. The answer is always, “Why not me?” And that helped. The doctors don't know. We don't know. The pills I take give me a small window of movement.
But what happens when that window closes? At some point, I’ll find out. They tell me that however many pills you take, you can’t avoid the immobile stage. And sometime in the future, there’ll be no more windows. Is it dark ‒ black for the future? I have a wonderful Parkinson's nurse called Catherine. Besides Tim, she's been the one who has kept me going. She sees the fear. Yet without giving any false hope or promises, she’s reassuring. I'm not religious but I hold onto the sentiment expressed in one of my favourite poems, “the leaping greenly spirits of trees/ and a blue true dream of sky... everything which is natural which is infinite which is yes”. I may not be able to do that much longer in the future but I am alive today.
- from http://www.brainandspine.org.uk/parkinsons-disease <accessed 29 August 2017>.
- from Elizabeth Bishop, "One Art"; later lines are also taken from the same poem; <https://www.poets.org/poetsorg/poem/one-art>.
- from http://brainfoundation.org.au/disorders/parkinsons-disease <accessed 21 August 2017)
- This is a reworking of the line from Li-Young Lee's The Winged Seed (Hungry Mind Press, 1999) where he writes, "my father exhorted the listener to build a shoe fit for the word to don and strike its way over the earth."
- Gayatri Spivak, The Postcolonial Critic, edited by Sarah Harasym (London: Routledge, 1990).
- from ee cummings, "i thank you god", https://www.wolfson.ox.ac.uk/~ben/writings/ithankyouGod.html <accessed 16 September 2017>.