Hello.

What would the world be like if one day the 6 billion + people who inhabit our planet woke up and suddenly everyone agreed there was no such thing as Alzheimer’s disease? Would the lives of the five plus million people in the United States and millions more around the world who are already living with the diagnosis of Alzheimer’s disease significantly change? Would the lives of their caregivers change? What would change if there was universal agreement there was no such thing as Alzheimer’s disease?

For me, a person who has lived with the disease and the diagnoses of the disease are more than five years I doubt that anything would change. My mind would still wander when I didn’t want it to wander. I would still wander when other people didn’t want me to wander. I would still be unable to recall events, to recall the order of events, to understand events in the same general way that those around me understood the events.

The current discussion centering on the reality of the disease called Alzheimer’s seems to me to be irrelevant and in fact distracting to me and to others. Certainly there are financial consequences, certainly there are egos involved, certainly there are jobs and reputations and even the survival of large organizations dedicated to fighting Alzheimer’s disease at stake. These are indeed real issues for the scientific community to address, and for the media to exaggerate and exploit.

Still, I wake up each morning with symptoms, with the syndrome, with a similar set of cognitive deficits that I seem to share with millions of others. With the general, erratic, and sometimes unpredictable timeline. With an almost random selection of symptoms relative to the symptoms other individuals experiencing. I wonder why don’t I do that, when others who have the disease to it. And I know they wonder the same of themselves as they see me and others. There must be answers I tell myself. There must be truths, certainty, a rational explanation of what why when and where and how to understand, predict, change if necessary my behavior in the next five or six years.

The more people who share my diagnoses I spend time with, the more I am convinced there is no truth to this disease in the sense that the medical model and we are sure or is there, we have just yet been unable to discover.

It may turn out that we discover the brain is smarter than we are. Maybe Hal lives in all of us. Maybe we are smarter than we think or our brain is letting on. But always in the end we are left with ourselves. With our sense in our knowledge of we are, what we are, and how we are. I just don’t have those senses with clarity I did for the past 50 or so years. That’s a real fear of mine. That’s the darkness I feel between my ears and deep within myself.

I still yearn and search for the light. I don’t like living in this flickering twilight zone. I wish I could adapt. The light seems dim, sometimes bright, increasingly flickering. I can’t depend on steady illumination of what is going on around and in me. Perhaps the song I learned as a child was right…

“This little light of mine, I’m gonna let it shine,
Don’t let any one blow it out, I’m gonna let it shine
Carry it all over the neighborhood, I’m gonna let it shine, let it shine, let it shine, let it shine!”

~Richard