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.
I watched most of the PBS special and what I came away with is the enormity of cost and the scope of caring for a burgeoning Alzheimer’s population. I thought that their point is that we need to harness resources to identify what is causing it and develop a cure. It certainly behooves us to examine the research that has been done and reported by neurologists like Daniel Purlmutter on dietary contributions to brain inflammation. We can embrace the joy, as the author pointed out, but also work toward prevention of a costly and debilitating disease.
I have been leading a Community Circle discussion group in a Memory Care House for 5 weeks. This has been my first direct contact with people with dementia. What a learning experience for me! Just yesterday I decided that for the next Circle, I would introduce the concept of one reason why we are gathered together (residents, staff & family), is to learn from our elders. Then I read your piece today. It blew me away.
Thank you Bill.
Kudos, Bill, for speaking truth to power once again! “A Hundred Miles in Their Shoes,” so poignantly speaks truth to PBS about its documentary, “Alzheimer’s: Every Minute Counts”. I too have had the privilege to get to know and support hundreds of individuals and their families living with Alzheimer’s over almost four decades. My father also had Alzheimer’s disease. Each individual I knew and currently know is special, and while they experience impairment of some capabilities, there are many other capabilities for them to experience friendship, dignity, love, happiness and enjoyment – just like Bill’s daughters.
The true tragedy of the film is that public broadcasting made the choice to focus only on lost capabilities of people living with Alzheimer’s and fear-mongering tactics to raise awareness and funding. It’s underhanded, demoralizing and dishonors the lives of people and their families living with Alzheimer’s.
Far more can be accomplished for Alzheimer’s and other forms of dementia with a positive, proactive approach. PBS’s singular focus on a tragedy narrative is tragic. We expect more from a public broadcast system. Thank you, Bill and Al and others, for speaking truth to power!
Brings to mind the quote from St.Francis ‘All the darkness in the world cannot extinguish the light of one candle. Thanks for shedding the light.
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Today In CT Kelly Papa and colleagues started the ECHO Summit and of course this was on our minds. The question becomes how do we translate tragic narrative to hope when it’s so painful to watch the emotional and functional changes when some is declining in function (cognitively or physically)? Be it Alzheimer’s, ALS, or another terminal illness hope is challenging when watching a person in pain, even when trying to choose nontragic perspectives. Meanwhile $ for research may prevent the challenges for future generations. The numbers are flattening. Every person living with dementia that I’ve spoken to would love a cure, including my 57 year old cousin who has more happy days than sad ones. Yes we can and do choose, but to not have to would be great. I can’t wait until Im out of a job because AD is eliminated.
Thanks you for inspiring us as we care for two wonderful mothers and helping them live a full life through their elder years. I have so many who will benefit from you and your families story of joy. Continue to push ahead with energy and enthusiasm.
The most exquisite message on love and the human spirit… and beauty in all things!!
Truly beautiful,you are and always have been inspirational.keep the faith of your strength it is good for all who know your story.
What a powerful, evocative essay. I read it first early this morning. A few hours later I read it out loud, over the phone, to my 95 year-old mom—who has a fully functioning brain (body, not so much)—following a discussion about a (non-health) challenge one of my siblings is facing. I thought your words might be useful in helping her adjust her ‘tragedy’ thinking into something more positive. Plus, I knew your story would put our issue in perspective. What I didn’t, and couldn’t, know at the time was how much emotion I would experience by speaking your words with my voice. My eyes welled with tears.
Thank you for sharing your Haleigh and Hannah with us, for sharing Their Lessons and Your Love.
After my mom and I hung up, your words continued to echo. Could they serve as wise counsel beyond the “tragic narrative” of illness, disease, and dementia? Is there another, i.e. universal, lesson here as we adjust to the new—dare I say, tragic—reality unfolding nationally every single day. Can we choose a “deeper and more meaningful approach to life” as we find our place going forward? Or do we have to accept the ‘tragic narrative’ that abounds in print news and social media? Can our grief and fear “be transformed into something new”? Collectively, we need to embrace “the true meaning of strength and persistence.”
The following hit me like a thunderbolt: “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.”
Bill, thank you for this masterpiece. I hope it reaches thousands or more. (I’m sharing it wherever I can.) I hope it serves as an antidote to the current tragic narrative about Alzheimer’s and other causes of dementia, and that it shifts the dialogue. And, finally, I hope it raises our daily consciousness in all areas of our lives.
May we choose wisely.
Thank you for helping us to frame a narrative of joy on our lifetime journeys. You and Jude and your work are truly inspirational.
Bill: Now that Wende and I are moved to Corning, NY, we get the NYTimes every day. It seems that, in yesterday’s (1/25) arts review section, the reviewer generally agreed with your assessment. That’s certainly not the first time we have witnessed your views validated. Your daughters have taught you. So have thousands of others. When I have been with people who have dementia, often there is music – sometimes dancing. The smiles are legion, often because they can recall music usually with a smile. Those smiles are worth living for!
Ahh, Bill. Thank you for sharing and understanding and teaching! I remember holding Haleigh when she was about 2 at a Chautauqua on your property for Eden Alternative – you said, “she is going to be a be-er not a do-er” and all we have to learn from each individual who touches our lives. And then when you did the Eden bus tour around the country — flying staff in to assist with your girls along the way—. I have had the opportunity to share so many joyous moments with too many people to count over my 40 years in elder care, and would not trade a second of the time with my Mom as we journeyed through her years with dementia – she always stayed herself and to the last – glimmers came through – always the kind caregiver herself.
So much work remains for us all – thanks for keeping the message strong and constant!
You are a Blessing! Thank you!
Story making, this is the way we can grow as a culture into a new way of being and seeing. Thank you for your openhearted honesty and truth telling. You inspire goodness in all those you touch.
I use to look at severely disabled people and think, okay by comparison my life isn’t so bad. I since realized how incredibly disrespectful this thinking was. Everyone is doing the best they can with what they have to work with; and everyone’s life and journey should be accepted and respected (and not considered pitiful or tragic).
I am forever changed by your work and your vision. You and Jude have lead the way for so many of us and I am incredibly thankful, just so thankful.
Thanks, Bill, for this beautiful testimonial. I have been trying to explain the dehumanizing effects of the tragedy narrative, and I have wanted to create a better understanding through an example of how a similar narrative would affect how we view people with disabilities. You have lived it, and you expressed it perfectly.
Your story brought me to tears! I remember seeing your girls years ago when they were smaller, and what you and Jude have done for them has been truly amazing. Thank you for sharing how the positive, joyful narrative is stronger than the tragedy narrative.
What a beautiful tribute, Bill. You have reminded me how deeply you can love. It also reminds me to make the same choice that you and Jude made, to find joy. It was a wonderful, positive way to begin my day when I read this and I send a hug and thank you for it.