There are 3 generic illness stories . . .

The first type of story is the most common. We recall how we were when we were healthy, then how we got sick or diagnosed, what remedies we were given by our physicians, and finally how we got well and went on with our lives as if the interruption was a bump- even a big bump- in the road.

The second type of illness story is much darker and almost never a complete story. When we tell this story we are barely able to speak because we are overwhelmed by the chaotic nature of the illness. We are inarticulate and often silent in our suffering. People who listen to this story are frightened by it and often steer the conversation away from the person’s suffering. We often try to minimize what has happened or try to turn it into a story of remedy and return to health.

The third type of illness story is one where there is, after the suffering has begun, an awareness that life has somehow changed forever, and the task that remains is to rise to the occasion, to find meaning in what has happened, and to share this wisdom with others.

To my way of thinking the Alzheimer’s Association has told all three types of stories- we are well aware of the suffering and turmoil and fear this disease evokes as we are of the hopes for remedy.

But, what underlies the mission of the Association is the third type of illness story- the search for ways to hear others, hear their suffering, and provide a voice to what may be only faintly heard. This search is never complete. Each interaction, no matter how mundane, is a reaching out and a promise to be a witness to suffering; to make it mean something.

For over a decade, it has been my privilege to bear witness to families who have been shaken by the shock of testing and diagnosis, the fear of a future no one imagined, and a present that one must live.

Often, like these families, I have served as a proxy in giving voice to those who sometimes falter. But there’s rarely been a reason to serve as a proxy for these families’ courage. We have stood together, through hours of tears and rage, frustration and grief, and sometimes even humor, to find on the other side a sensibility rarely spoken; namely, a belief that in dementia, while there is considerable, often profound loss, there is no loss of human dignity if we choose to see it that way.

People remain adults despite their impairments, even when they need help with basic activities hard won in childhood. In our groups, the folks with the diagnosis show a maturity few credit. Group after group, year after year, I have seen affection, respect, support, spirituality, and understanding.

People with AD can talk about their illness, their feelings of loss, their hope, and their daily pleasures. As mature adults, they can talk with their peers about suicide, dying, and death without being morbid or depressed. I never cease to be impressed and encouraged by my patients.

It was my good fortune to be asked to begin the Early Stage Peer Group program some eleven years ago by Patricia Taylor who had the foresight to see where the Association needed to go. And, over the years it has also been my privilege to work closely with my co-therapists Grace Jackson, Kristi Marx, and Janet Jackson-McCullough. These professionals have had an essential and enduring impact on the quality of our work.  I have also been fortunate to have served on various committees and on the Board of Directors of the Association. These experiences have deepened my awareness of AD on a larger scale and allowed me to work with a wonderful group of people.

This has been a unique experience for me: rarely does one get the chance to discover a life’s work. It has been an unexpected journey into a fearful place where I was taught by these families that the ultimate form of expertise lies in matters of the heart.

I have become part of their story; and they have become part of mine.

Thank you again.