On Friday, January 10, 2014 Sam Berns died of, well, old age. While that in itself is not remarkable, what is remarkable is that Sam Berns was only 17 when he died of old age. He suffered from Progeria (Hutchinson-Gilford Progeria Syndrome), a genetic disorder which manifests in rapid, premature aging. It is rare: there are less than 500 children in the world with this condition and they live, on average, to the age of 13. Most of these children die of cardiovascular disease – the same cardiovascular disease, atherosclerosis, more usually associated with normal aging. Both Bern’s parents are physicians. Both pediatric specialists, they founded the Progeria Research Foundation and Sam’s mother pioneered the research of the efficacy of Lonafarnib as a treatment for Progeria.
I do not want to tell the story of this remarkable young man, since many have done this so well in this week following his passing. The Globe and Mail has an obituary, http://www.theglobeandmail.com/life/health-and-fitness/health/sam-berns-the-best-known-face-of-a-rare-illness/article16357760/#dashboard/follows/, but to really get a feeling for who Sam Berns was, you should watch his Ted talk: http://www.youtube.com/watch?v=36m1o-tM05g
To honour this young man’s courage, I want to consider the role that the courage to live plays in dying. In the Ontario Medical Association’s focus on the end-of-life this year, the emphasis is on death as a normal process of living. As a pediatric specialist, children who must consider death because of illness provide a poignant reminder that one of the traits we must develop or hone in order to die as we would like is courage. If you don’t have a condition that makes death imminent, you can lull yourself into the mistaken belief that you can delay certain goals or aspirations for when you have “more time”. As much as you might hope to live each day fully, those whose death is most predictable know that it takes extraordinary focus and great moral courage to just live.
Sam Berns emphasized in every presentation and interview that he had “a happy life” and that he did not want people to feel sorry for him. When one listens to him, or watches an interview, one can occasionally hear his voice break or see him pause, as if holding himself back from the flood of negative emotions that must have been present for him as for most who know they will soon die. Instead of lamenting what he does not have, Sam Berns focused on what he did, and the sooner we do this, he told us, the better we will live and die.
For those who are dying, and those who care for them, resilience is the trait that most likely allows us to live courageously. Families can help individuals develop resilience by fostering the trait in their midst. Froma Walsh in her book Strengthening Family Resilience outlines how families can develop this trait, providing a way to help cope with death. Resilient families, Walsh tells us, have 3 belief systems: they find meaning in challenges; they are optimistic; and they value “transcendence and spirituality”. (Strengthening Family Resilience) If you listen to Sam’s talk, you can hear that he comes from such a family.
As a child psychiatrist, I know that we work with the families of children with fatal conditions to develop resilience, but I do not believe that we work with the families of the elderly to do the same. Building resilient families throughout the full life cycle of a family might be one way to enhance the psychological care at the end of life and help us face this transition with courage. Many families do build this resilience, connecting members to each other and to friends, with good times, traditions and the maintenance of family stories. Good families praise us for our talents and strengths and are patient with our frailties. Even the siblings we don’t quite get along with when we spend too much time together miss us after being apart.
While I have mentioned family, courage is also fostered by our friendships. Many of our parents, grandparents and great-grandparents learned courage with their comrades and friends through the two World Wars that afflicted their lives, forcing them to live while others died. For many of the elderly, the only people of their own generation that they have to help them face death are friends, their siblings having passed away before them. My mother’s sister and brothers had died before her and she missed them terribly in the last years of her life. She loved to visit with members of their families when she could – this gave her courage to think about how much they had meant in her life. Family ties you to who you are, while friends are often more a reminder of what you have done and become known for.
Sam Berns is a hero for me. He says of the times when he had to cope with feeling poorly, “Sometimes I had to be brave…and being brave isn’t easy.” He reminds us that remembering that you are doing something difficult also helps you get through it… Oh, and so do parties!
“Never miss a party if you can help it!” (Sam Berns)