I’m standing in the acute neurosurgery ward of Innsbruck University Hospital. The senior consultant has asked me to tell him about my son Miles, who is lying motionless on the bed beside us.
I tell him that Miles has been a joyful son to have, my firstborn child. That from the beginning he has been quick, bright, an adventurer, a risk-taker. That one of the things that has defined him has been his brain. He got a first-class degree from Oxford. At 24 he was selected as one of five young people to represent Britain during the European Parliament’s Youth Convention. He started his own tech company at 26. He is writing a book in his spare time. He rides a motorbike, he sky dives, he dives with sharks. He practices qigong. He makes electronic music, he writes poetry. He is irascible, funny, kind, down to earth. He loves life, attacks it head on, dangerously, seeking adrenaline, sometimes foolhardy, learning from his flaws while exploring, always, his spiritual resources.
I am boasting about my son. But it is important the doctor should know about Miles’s brain, the brain that he and his team are now responsible for.
It is universally understood that a primal maternal instinct is to protect one’s young. To will the death of your child would appear to be a reversal of that instinct. But, as I found out, it can be the extension of it.
Miles, the eldest of my four children, suffered a catastrophic brain injury while snowboarding in Austria in 2006. He had just turned 29. He fell into a coma, from which he emerged eight weeks later into what is known as a minimally conscious state.
It meant that he now existed in a limbo of fluctuating consciousness, at times agonizingly aware of his predicament but unable to speak or move with intent. He would roar at times, as if in pain or with rage and frustration. A tear sometimes ran down his cheek. Sometimes the corner of his mouth would lift slightly, a kind of smile, when he seemed relaxed. He was imprisoned in a twilight world of profoundest solitude from which there was no release. And all the while his body was deteriorating, his limbs stiffening, his muscles contracting in painful spasms. His only relief was the oblivion of sleep, his expression each time he woke a dawning grimace of horror.
Miles had been saved from dying, but he had not been given back a meaningful life to live.
Once a powerful, active young man, his days now consisted of being hoisted from bed to wheelchair and back again. Sitting with her arm around him, my youngest daughter, Marina, said: “Here I am, hugging my brother, mourning my brother.”
We mourned the loss of Miles as he was, but we loved the Miles he had become quite as much. We were not prepared to give up our fight to get him the best possible treatment, the best chance of recovery. It was a constant battle, but hope kept us going; our lives were consumed by it.
On the fourth anniversary of his accident the children were all at our home in London for supper. For four years we had been fighting for Miles and nothing had changed. Somehow that night it became clear that because nothing had changed, everything had changed. We were reaching the end of our long journey of hope. Like a tree planted to block out an unwanted view, hope had slowly, unnoticed, been withering at the root. Now it had fallen away and all of a sudden the view was visible again. It was no use continuing to pretend it wasn’t there.
For some time we had noticed a darkness of Miles’s expression, a marked stiffening of his jaw, a dismissive closing of his eyes whenever we made our usual upbeat statements. It was difficult for us to acknowledge, though in truth we had felt for a long time that he did not want to continue.
One evening my daughter Claudia returned from visiting Miles. We had poured ourselves a glass of wine and settled on the sofa to watch the news.
Miles wants to die, she said. I turned off the television.
What do you mean? I asked her. What made you say that?
He told me today, she replied. He was coughing uncontrollably when I got there. I tried everything to help, but nothing worked. Then he did a huge, choking cough and roared like I’ve never heard before. It was frightening. I’m so sorry, Miley, I wish I could help you, I said to him, and he just lifted himself right out from the pillow staring at me with such intensity, such anger that I knew exactly what he was saying. He was saying, You know you can help me. Do it. Please do it. He was pleading with me.
There was nothing I could say. I understood what she was describing.
The two doctors treating Miles now told me they believed Miles did not want to continue.
In desperation one morning I contacted Dignitas, the Swiss organization that helps terminally ill people end their lives. I explained the situation to the woman who answered the phone, though all the time I was aware that Miles would not be eligible because he was not able to express his intention to end his life or to undertake the last act himself. I feel so helpless, I told her. My son falls outside every avenue of hope – I have consulted a lawyer on his behalf, but because he is not in a persistent vegetative state he doesn’t fit the British legal qualification for end of life. He is not eligible for Dignitas and he can’t do it himself. Yet he is aware enough to suffer, and to convey his suffering to us and to the doctors treating him.
Some months later Miles developed sudden onset pneumonia. His passivity in the face of it was exceptional; it was as though he was willing it to take him. His expression at the end was calm, as though at last he had taken control.
It was a devastating final loss for us, a second death. We had lost the powerful Miles, but we had also lost the sweet, damaged Miles we had fought to protect. There was the agony of knowing how young and vibrant he was at the moment he was cut down; there was also the poignancy of his years of unalleviated suffering. But for him, I have no doubt, his death was a blessed release.
I grieve for him every day, but it is the Miles before his accident that I mourn, the 29 years of his deeply lived life that I miss so painfully. His death was the only good thing for him that happened after it.
I do not mourn those five years. But I wish Miles had died the beautiful, violent death he faced that ice-clear morning on the mountain slope. Then it would have been as it should, a quick, brilliantly lit thing, a leap for joy into the glittering sunshine and the high blue air. No suffering, no pain, just an end, clean and quick, like his clean, quick, brilliant mind.