In 1980 I became ill with a viral infection and did not pull out. This will be a familiar story for many of you. Eight of us were affected at the same time by the same flu-like bug and all of us went on to develop severe, chronic ME including both my sons aged six and twelve and a group of academics from my husband’s university department. It took between three and twenty years for us to recover. My younger son is still not fit after thirty years.
My elder son recovered first, was back at school after three years, and hasn’t looked back. My younger son was the most severely affected, missed most of his primary schooling, and after trying to attend secondary school spent four years in bed. I mean in bed – unable to do anything. I went back to work as a research fellow in Glasgow after seven years. I knew I wasn’t fully recovered and I was ignoring symptoms that hovered in the background, but I was tempted by a three year grant and a fellowship in a good research unit. I deluded myself I could cope. After eighteen months, I had a relapse that was worse than the original illness and this time I left the world as I knew it. It would be another seven years before I would function again.
For my husband, who had coped for decades with a family whose members were ill, and for my younger son and me, the plan to cross an ocean was in part a farewell to ME. As we pulled up the anchor for the last time with 3000 miles of ocean ahead of us, we also hoped we were crossing the threshold out of the ME ghetto. We already adored the sea and were experienced sailors. We had managed to spent some time drifting around on boats even when we were ill. To cross an ocean, even for able-bodied folk, is a challenge and an adventure. For us it had the extra emotional significance of a finger up to an unknown illness.
I look back with awe and wonder at what we did. I don’t regret it, not for a minute. How many families can say they crossed an ocean – especially families who had known the heartache and still life of a chronic illness. The memories we shared on that journey will remain with us for the rest of our lives – the every-changing sea conditions, a leaking boat, swimming in four-mile-deep warm water, the collision with the forty-five foot whale, the dolphins playing round the boat, blink-and-you-miss them flying fish, the freezing fog, the blue eggs, the gales, and seeing land after three weeks of looking at the horizon. Most of all, I remember a state of mind we rarely achieve at any other time in our lives – the total immersion in the present, in harmony with sea and sky, tuned in only to the sails and the weather. And we lived towrite the tale.¹
But as we progressed, I saw that my son’s fragile health was deteriorating. If there was a tragic note that tolled as we traveled onwards, it was the return of his ME symptoms. He was heroic, coping with difficult tasks like unjamming our biggest sail in huge seas, and it took its toll. When we dropped him off in the Azores, he was once again terribly, shockingly ill. But his girlfriend was waiting, she stayed at his side while he slowly recovered, and two years later they married. Both know chronic illness and both get around its limitations and don’t complain. A year after they married, twin girls were born on Bonfire Night. My pyrotechnic grand-daughters.
My distress at my son’s deteriorating health during our adventure has been offset by the joys that have followed. He is functioning, albeit not at the level of other young men of his age. With his wife, he set up a successful wedding photography business that allowed him to rest between weekend shoots. Two years ago, they sold their business, rented out their house, and moved to the vast skies and watery landscape of North Uist. It suits them up there. Fitness remains elusive, but they are managing.
Stefan and I sailed together for thirty years, in and out of illness. After crossing the Atlantic, we were content to move on. We have almost finished building a house in an oak clearing, up a steep track, in southern France. The views are magnifique. This is a place of quiet solitude and green panoramic views of mountains.
In my third novel, The Red Beach Hut², I am back where I belong, on a beach, watching and listening to the waves. The sea with its rainbow moods and inevitable progression up and down the sand is the backcloth for an unusual, poignant and fleeting friendship between a man and a boy. They too belong there. ‘The sea is in the man’s heart too,’ the boy says.
¹Shooting Stars are the Flying Fish of the Night. Linen Press. http://linen-press.com/shop/shooting-stars-are-the-flying-fish-of-the-night/
² The Red Beach Hut. Inspired Quill. inspired-quill.com/books/