Two stories about Alzheimer’s have touched me this week. Yesterday the author Sir Terry Pratchett died having suffered with the disease since 2007. Earlier this week we heard the interview with Chris Graham, the former soldier, talking about having early onset Alzheimer’s. Both men had the courage to go public with their illness.
Chris spoke about inheriting this condition of familial Alzheimer's from his father who died at just 42. Chris himself is only 39. His older brother also affected now needs round the clock care.
What made the interview so moving was his positive attitude and his hopes for his young family. Next month he will set off on a 16,000-mile, year-long bike ride around the coasts of Canada and the United States to raise money for Alzheimer' research. As he says, "If we can put a man on the Moon then surely we can find a cure for Alzheimer's?"
Today we hear much about the lack of resources in our health service, the demands made on the changing nature of care for the elderly living longer with more chronic illnesses. But we focus less on the young who die and how they cope knowing that they will face a gradual stripping away of bodily dignity in the prime of their lives. I don’t think anything in life can prepare you for that. Saints and scholars have written that there is a distinction between the dignity of the soul and the dignity of the ego and that fundamentally faith in God demands this kind of letting go of the ego. But it’s hard to feel comforted by this kind of thinking as we witness the slow demise of all that makes us human.
But as Chris said, knowing his condition, rather than be sad and upset he can plan what he wants to do. I find this both humbling and inspiring because this takes so much courage. Rather than lament the lack of a cure, he wants to help find one. There is both hope and heroism here - to want to give something back to help future generations, to be able to accept your mortality with such candour and to live your life to the full while you can.
In his novel, The Pilgrimage, Paulo Coelho describes dignity in the human effort to live meaningfully while aware of the reality of death:
Human beings are the only ones in nature who are aware that they will die. For that reason and only for that reason, I have a profound respect for the human race.. Even knowing that their days are numbered and that everything will end when they least expect it, people make of their lives a battle that is worthy of a being with eternal life.
Life holds a potential meaning for all of us even under the most difficult conditions but sometimes it takes one person’s actions to remind us just what living with hope means.