The controversy surrounding the startlingly negative PBS documentary “Alzheimer’s: Every Minute Counts” and its relentless focus on what many have called the “tragedy narrative” has affected me deeply– but not for the reasons some people may suppose. It is true that I am a geriatrician and it is true that I have cared for and about thousands of people living with dementia and their families. But, I am also a father of five children, two of whom were born with a neurological condition known as Ohtahara Syndrome, also known as “idiopathic infantile encephalopathy.”
I have sat in a chair gripping my wife’s hand as a pediatric neurologist informed us that “your daughter is not neurologically normal.” Those words exploded across our minds like hand grenades. Dr. Whelan, now retired, told us that our daughter Haleigh Jane would experience hundreds of seizures a day, that she would be blind, that she would be unable to speak, or feed herself, or move. She told us this when Haleigh was just three months old. There is no cure for Ohtahara Syndrome, there is no effective treatment, and our little girl would require round the clock care for the rest of her life.
Two and half years later, and despite the best medical testing in the world, we once again sat in the office of a pediatric neurologist as we were informed that our dear Hannah had also been born with Ohtahara Syndrome. Once again we tumbled into a bottomless ocean of grief.
Life had presented us with a choice: we could accept the “tragedy narrative” that fit so seamlessly with our overpowering sense of loss or we could tell a new story. Because of our experience being with and learning from elders, and our openness to learning from people living with dementia, we knew there was a new story waiting to be told. We could, as a family, challenge and transcend the tragedy narrative and create a new narrative. We chose to tell a story of love and growth and possibility. We chose to honor our impossibly fragile daughters as teachers, as sages who could lead us toward a deeper and more meaningful approach to life and love.
As we crafted this new narrative we found that our grief could be transformed into something new. All five of our children became precious gifts. All five of our children enriched our lives. All five of our children showed us new ways to love. Haleigh and Hannah just taught us in their own way, unable to use words, they taught us by example. They showed us the true meaning of strength and persistence.
The pediatric neurologists told us that neither Haleigh nor Hannah would survive childhood. Hannah remained with us and taught us everyday for 18 years before she departed from this world in 2015. Haleigh is with me now as I write this; she is 22 years old. She loves life– and so do I.
Now, I hope you can understand how I feel when I see experts in the field of dementia use the media to amplify and validate the message that living with dementia is solely and completely a tragedy. It hurts me when the voices of people living with dementia are silenced.
No one can tell me that “I don’t understand.” I do understand the corrupting power of the tragedy narrative. No one can tell me that it is impossible to craft a story of love and virtue from Ohtahara Syndrome or Alzheimer’s and dementia. I know the truth. The truth is that life is a complicated, wonderful, grievous, painful, joyous– mess, and “story making” is the only power that is contained entirely within the boundaries of our flickering mortality. We choose. We decide. We create and we destroy meaning.
I speak for Haleigh and Hannah, I speak for the millions living with dementia, when I say that there is a better way. We may never have the ability to cure Ohtahara’s Syndrome, we may never cure Alzheimer’s, but we can, we must and will tell a new story about the people we love and the journey we are sharing with them.
We have a choice. We can choose tragedy or we can choose joy.
We chose joy.