When Michael’s cancer invaded his brain in late 2016, and most especially after the effects of whole brain radiation, he lost his ability to deal with technology. No computer, no phone, no remote. Television was confusing. Music was supplied by me-after years of constant tunes, he reached for nothing. In addition, his memory was impaired. All the humdrum daily events we take for granted vanished from our world. In the few weeks of semi-normal life that we squeezed out of his last days, the only significant routines were simple body maintenance, limited conversations and desperate hugs.
Frantic to keep him as engaged as possible, I started asking him questions that might stimulate other portions of his brain-my desperate effort to improve the quality of his life. Mine, too. Frequently these questions elicited a mysterious response – everything you want to know is in the red notebook. What the hell was the red notebook? To me it sounded like a figment of his imagination, a stuck place like a skip on an LP. I felt so desolate and empty. Void of the ability to make an impact, to provide meaning and depth in our shrinking interactions.
Until the day I found the said red notebook, squished in between his many folders and cookbooks in a basket on the floor, next to the spot where he always sat on the couch. Sweet relief. It was chock full of ideas and lists, the outline for an autobiography and various chores to be done. Whenever later was. Coupled with what I found on his computer five months after his death, this was a unique look into the mind of this man I knew and loved so well. As he said so many times, he wasn’t done. Even though he faced down Merkel Cell every day for more than five years, there was humor and wit and plans for possible adventures. Ideas and designs and epitaphs. A notebook bursting with hope and desire for what he called “this glorious life.”A look into the most private labyrinths we all carry inside us. red was also his favorite color.
Using the autobiography as a guide, I decided to interview him to see what he could recall. To my amazement, the stories from sixty years ago and more came pouring out of him as I wrote frantically beside him. Too stunned to stop and find a recording device. Too afraid to stem the flow in case it disappeared. I’ll never understand why that storage bin was still accessible, but everything changed from sharing those tales of the boy from long ago.
I’m now transcribing all those notes, with all his words, into pages that will be the companions for my kids and grandchildren and perhaps beyond all of them. My concept of immortality.