I blundered around for a while, bumping into urinals and wash basins, hoping to find a light switch or the way out. At this point in the story I would like to say that I was in a state of complete sensory deprivation. This, unfortunately, was not the case. All around the ship music was being played over speakers. You could barely hear it on deck above the noises of the ship’s engines and the wind blowing but here, in the darkness and with the door shut firmly, it sounded very loud. It was disco music, maybe from the eighties, something like that’s the way, uh-huh uh-huh, I like it, uh-uh uh-huh. It made my need of escape from that place feel more urgent.
I began to imagine the ship reaching port and Flic and our friends deciding that I must have got off before them. They would leave the boat and it would set sail again, back to La Gomera, with me crashing around in the darkness, madness setting in, my cries for help drowned out by the awful sound of that’s the way, uh-huh uh-huh, I like it, uh-uh uh-huh. Perhaps some days would pass before I was discovered, stretched out on the floor, semi-conscious, my body still twitching in time to the music…
The train pulls in and we wheel our bikes on board. We are off for another day’s adventuring. Half an hour later we get off the train at Tywyn and cycle towards the Dysynni Valley. But before we are out of town my body seizes up and we have to stop. I lie down on a bench in front of the cinema until I am able to move again. Then we cycle over the hill on little used tracks and roads to Dolgellau and back along the estuary to Morfa Mawddach from where we get the train home. It’s wonderful but it’s tough. For long sections of the ride I struggle to keep my feet on the pedals, my bottom on the saddle, and the bike on the road. I tumble off a couple of times when we are going up very steep hills. And when we get home I don’t get the usual feeling of triumph, of yes, I did it. Instead I find myself questioning if it was worth the effort. I wonder how many more times I will find the energy and enthusiasm for such adventures.
I remember that a few years ago, after our second trip to the Himalayas, I was possibly fitter than I had ever been in my life. Fitter than I had been before suffering from Parkinson’s. I dreamed up the idea of what I called a triathlon, a canoeing and cycling and mountain walking day trip from the mouth of the Dyfi Estuary to the top of Cadair Idris and down to Dolgellau, making the journey home by bus. Flic and I did it together one day when the wind and tides were right, going back to collect one abandoned car, two bicycles and two kayaks later in the week. If it sounds crazy to you I have to say that such things are not an unheard of response to the disease. At any one time there are a few Parkinson’s sufferers in the UK running marathons.
Bill stays for a week and we find ourselves talking about Parkinson’s often enough for he is also a friend of Glynis, whose emails, you might remember, I ignored in chapter six. Bill says that Glynis sometimes worries that people think she’s faking it. She will be in a wheelchair one minute and walking fairly normally the next – that must make people suspicious she thinks. Oh, yes, I know about this. I often run to the post box in the village because I have such difficulty walking. I imagine people looking out of their windows and tut-tutting, isn’t he supposed to be ill? And I have discovered this year that I can play tennis. That’s right. The little messages from the brain to the body like walk across the kitchen without falling over often fail to get through. But the big messages like run around this tennis court and hit the ball as if you’re a young man again do make it, intermittently, but often enough. And so there are days when I am helped into and out of the car and I limp awkwardly onto the tennis court and confidently play three sets.
Back at home I wear a buzzer alarm when I’m on my own because sometimes I sink to the floor and am unable to get up. I press the red button and a neighbour comes to help. I’ve had to use it three or four times this year. The people who see me run to the post box or hit the ball around the tennis court don’t see this. Not being able to do the washing up and finding it difficult to get my wallet out of my pocket are two other things that could arouse people’s suspicions. How very convenient for him, they might think, he can do the things he wants to do. If only that was true. Music was always important to me but I can rarely play the guitar or piano now. I joke that I suffer from diminishing repertoire syndrome. It’s not that funny.
And while we are close to the subject I had better explain Nelly the elephant. It’s what I do sometimes when my feet won’t move – I sing Nelly the elephant packed her trunk and pretend that I’m walking through deep snow. It works for me. And the princess and the pea? I hear you ask. Perhaps you don’t know the story of the young woman who was proved to be a princess by her delicate sensitivity. She was kept awake at night by the presence a single pea that she could feel through countless mattresses and eiderdowns. And that’s the way in which, when my illness is at its worse, I find small discomforts exaggerated, particularly in the evenings and at night when I struggle to get comfortable enough to sleep. Did I say struggle? Not me. That’s another aspect of dealing with the illness, coping with the psychological aspects. So it’s not a struggle it’s a challenge. My glass is nearly half-full if I can make myself think of it that way.
Here is another strange thing. The illness makes it difficult for me to concentrate enough to read but I am still able to write. As I write this Bill sits in the kitchen and reads the beginning of this book. I hope he will find it enjoyable and will correct some of my grammatical errors. The time has come for me to say a big thank you to Bill for his help. I would also like to thank Nigel Judge and Geri Skeens for the careful reading of an early draft and for their thoughtful comments.
I have to end the book as I began it, with a massive thank you to Flic, who seems to be stuck with me now for better and worse. I like to think that the journeys we made together have been as worthwhile to her as they have been to me. Quite recently at the end of a busy day together we were drifting off to sleep and I found myself saying to her the words I’m glad I met you. There was only a tiny moment’s silence before she replied I bet you are. Then, as sleep overcame me, I thought I heard her say something more. I couldn’t quite make out the words.
The Road to Zagora Page 26
