It’s noon. Today I have successfully made and enjoyed coffee, walked the dog, unpacked the car, taken R to the bike store, found the bike lock, found R’s keys, installed a kryptonite bike-lock holder, rerouted a trip to the art store for new supplies into a trip to the bedroom to find 5 existing paint canvases. I have also eaten too many peanuts, expressed a tiny bit too much frustration, and felt a bit selfish in my desire to achieve something for myself on this beautiful Saturday.
I have begun to tell people, a few friends, 3 family members, and a room of 22 writer’s workshop students, that R has Early Onset Alzheimer’s disease. The immediate response is usually a sympathetic sigh. It’s exactly how I would sigh if I heard the news from you. I much prefer these honest sighs to the skeptical, “are you sure? I forget things all the time” or simply, “it can’t be Alzheimer’s.”
To the sympathetic I say, “life is both better and worse than you imagine.” The better parts are that R is still himself; kind, funny, fit, interested in life. We can hike, eat, enjoy theatre, museums, movies, travel. The moderately neutral parts are comprised of the continuous finding of keys, wallet, bike lock, Fitbit, shoes, phone, book. Patiently repeated instructions on the use of the Lyft app. My decreased personal productivity.
The harder bits are emotional.
Time has always seemed elastic, years flashing by, moments dragging. Each hour of the 640-minute drive to my parents has a different experiential length. The first couple drag, “we’ve been on the road for 17 minutes, is it time to stop for coffee?” In the last hour of the return drive I am convinced that the clocks have stopped working. The middle section is the best; time and distance in sync.
The beginning of our journey with Early Onset Alzheimer’s Disease (EOAD) was slow. Acceptance, recognition, and disease progression barely moved. Now we are in that magic middle section — where time passes quickly and we had better enjoy the view. Is it really April 2017?
It is time to put effort into where we are and what we do. Without a firm travel plan our days will fill with too much key-finding and not enough fun. I think Joshua Tree and Sante Fe would be nice this time of year.