Elizabeth and Stephen on their wedding day
Seven years earlier, we’d come to this hospital for the first time, after Stephen’s lung had collapsed on the way to a party. That hospital stay ballooned from a week to a month and my husband grew increasingly miserable. At one agonising point, he said to me, “Just don’t let me die in a hospital.” I promised him I wouldn’t let that happen. I imagined being with him in a cabin in the mountains, a field surrounded by aspen. But in the years that followed, I realised I probably couldn’t keep my promise. Hospital had become the place we went when things got perilous.
Now, with Stephen diagnosed with a rare, life-threatening form of pneumonia, things were indeed perilous. For 10 days the doctors and nurses fought around the clock to save him. He was heavily sedated to avoid terrible pain; his doctors were talking about wheeling out the “big guns” such as vancomycin, a powerful antibiotic. His kidneys were failing: when asked if he should go on dialysis, I quickly agreed.
Stephen was doing terribly; but I was still hopeful. Some of his doctors were, too. Crucially, Stephen’s CF doctor, Dr Michael Stulbarg, was more realistic. Dr Stulbarg worked in a field in which all his patients died young. Over the years he had helped Stephen and me face everything about his illness, from early mortality to depression to painkiller-addiction.
One night he asked me if I had a minute. I sat with him in the quiet of his office. “I know you guys,” he said, “and I know you’d want to know.”
The pneumonia was destroying Stephen’s lungs: the ventilator would not be able to keep him alive. His heart was also in trouble. The chances he would live were extremely slim.
I tried to imagine what Stephen would want. I knew that if he was dying, what mattered now was the time we had left – probably a few days. And then Dr Stulbarg said something that is crucial to hear if you want to do right by a loved one who is dying in hospital. “You can think about how you want this to go.”
I couldn’t give Stephen what he would want in his last days: we couldn’t get to the mountains. We couldn’t even get out of the ICU. But we did have each other, and we had the people who loved us.
I told Dr Stulbarg I could think of three things that would help. I wanted to have the sedation lifted enough that I could talk with Stephen once more; on his last night, before life support was withdrawn, I wanted to sleep with him, in his bed; and I wanted to make sure his family were with him while he died.
The doctors and nurses made all of this possible. We’d spent years working closely with these people; there was a mutual respect. They trusted us when we told them Stephen didn’t want life support, though nothing was written down. The nurses let friends come in after visiting hours and stay for long stretches, even though this broke ICU protocol. They understood that being on the brink of losing a loved one made us both clear-headed and crazy.
In the days that followed, the doctors found a moment when they thought Stephen would have the least pain, and lowered his sedation. I sat with him and squeezed his hand, and for the first time in days, he squeezed back. Two nights later, a nurse called to say I should come, to stay over. Again, we were breaking the rules – no one is allowed to stay in the ICU. It was something of a production to make room for me in Stephen’s bed, with the tubes flowing everywhere, but the nurses didn’t complain. I don’t know if Stephen knew I was there, but I lay with my head on his chest, and slept deeply for the first time in weeks.
The next day a doctor remarked that he and several others had come in and seen us, and stood together in silence for a long time. “We all felt terrible,” he said. “You’re so young.”
On Stephen’s last day, his friends flooded into his room to say goodbye. Stephen was deep in his own world, but I hoped some part of him knew. Then his family and I gathered in the room. His mother Fran stood at the foot of his bed, touching his feet through the blanket. His sister Tinka and his brother Clay held his hands.
The transplant nurse coordinator, Celia, was with us, too. She gently removed Stephen’s feeding tube, which I knew would have made him happy. Then she turned off the ventilator, took the tube out of his mouth and slipped out of the room.
I pressed my palm against Stephen’s forehead, silently telling him not to worry, though what did I know about dying? His forehead was warm. I could see his entire face for the first time in two weeks. He looked like he always did when he slept deeply, his skin smooth, his features relaxed. We stayed with him long after it was clear he was gone.
Since Stephen’s death I’ve remarried, and have two children, six and eight. I am lucky enough still to be close to Stephen’s family. The moment of his passing has shaped all our lives; it was an honour to be with him for it. And the good thing is that when I remember it, I don’t think much about where it took place.
‘My Foreign Cities: a Memoir’, by Elizabeth Scarboro, published by Liveright, £11.99, is available from Telegraph Books at £10.99 + £1.35p&p. Call 0844 871 1514 or visit books.telegraph.co.uk