“Jane, your life isn't worth living.” It was not a comment but a statement by my cousin. It was Boxing Day and the family were gathered at my aunt's in England. My back was particularly bad after the flight and I sat back in a zero-gravity garden chair we lugged everywhere with us. Since my back surgery, I can't sit upright long. Everyone was eating my aunt's goodies – except me because I am gluten and casein intolerant. I had brought supper in a plastic box. My immediate response, “Oh, Ann, but it is.” And it came from my heart. This was before incurable cancer was added to the mix, but my answer would be the same today.
So when I read about Shirley Parsons who has for fourteen years been locked inside her paralysed body, moving only her eyes, her words struck deep. In reply to the question how happy is she compared with her life before as a wife and lawyer, she says “… rather bizarrely I think that I am happier. Before the stroke my life was noisy and hectic but now most of the time it’s quiet, peaceful and calm. Over the years I’ve grown accustomed and become content with my life.”
Yes! Of course, I can't claim or imagine limitations like hers. But I am also at peace, content and actively warmly happy. I can't join in many group things like book club or volunteer. My opportunities for meeting people are limited. But that also means I have shed what a friend calls “the shitty friends”, those who gossip, complain and pull one down. Anyone who makes the extra effort to be my friend has a loving heart and an active mind.
When the glitz and crush of modern life is out of bounds, then there is space for beauty and peace, time for good chats. On the days my back is on fire and I lie on heat, I call my girl friends and we really talk about what matters, what hurts and what interests us. I have made some amazing friends through cancer. The good thing is that we don't have to put on a show – rather like not needing makeup. We understand deeply how the other is – and we gave reached into our depths to find courage and raison d'être.
A boy with cerebral palsy once said, “The good thing about my CP is I only see the kind side of people. That is proved to me every day. Locked-in people report a good quality of life. Those who suffer catastrophic events return to their happiness set point within three months. Suffering brings its own blessings. I hear this so often from my friends. Every hard thing that has happened in my life has widened my understanding of what it is to be human – and given me tools to reach out to others.
This morning, a neighbour ran out in her nighty to ask Mike how I am doing. Yesterday, we bumped into a neighbour who was working on his house. He paused, dusty and sweaty and asked anxiously how I was doing. I was touched; I didn't know he and his wife knew. “Really all right?” His eyes checked my face. “You're one tough lady.” I hugged him, dirt and all, and felt him kiss my cheek. When we got home, there was a pot of daffodils hanging in a bright bag on the door. That's what makes life worth while.
More info on Locked In Syndrome
Daily Telegraph article The Happiness of Locked-in Syndrome
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Pathway through Pain - Journey to Joy 
You are one tough gal. I am saddened to learn about the cancer.
Thanks. We had good news yesterday that my proteins are coming down well, so euphoric. It probably won’t last, but at least we have the joy of today.