Living is Painful

It's also beautiful.

Hills of Paso Robles, February 2016

Dear Dementia,

It was February 2016 and I was riding bikes in Paso Robles with my friend, Jennifer. Jimmy was with us -a photographer, a journalist, an organizer of trips, a bright, funny, citizen of the world who makes me laugh and think and try hard. I introduced him to Jennifer and the click of new friendship snapped into place.

On the last day, I found myself falling behind. I was, to be honest, always behind, but this day I was seriously behind. Jimmy rode up beside me, put one of his strong hands at the small of my back and ever so evenly, ever so gently, pushed me up the hill, and the next hill and the next one - a human E-Assist.

As we rode, we talked. I was writing a book, I told him, about you - how you killed my mother and how my older brother, Matthew, was dying at your hands. He asked how far along I was in my manuscript. “What manuscript?” I responded. “Well,” he said, “you better get on it. You’re not getting any younger, you know!” And then, he smiled, and rode off.

After the ride, Jennifer returned to Portland and I flew to Houston to meet Mark. I settled in for the long haul, took out my iPad and began writing, spurred on by the now nagging feeling that time was of the essence, thanks to Jimmy.

Time flew and before I knew it the pilot was announcing that the weather in Houston was wild and crazy (probably not his exact words). He was shutting down the cabin, flight attendants would be seated, belts would be tightened, drinks would be tightly held. I had just minutes of wifi left, so I quickly sent the draft to Jimmy. To prove to him that I was serious. To thank him for pushing me up the hills. To let him know how much he meant to me.

The next morning, when I got out of the shower, my phone began pinging, one after the other the texts arrived. Jimmy had suffered a massive heart attack while riding. In fact, his heart had stopped, more than once - the work of one of your deadly cohorts.

Jimmy recovered, brought back to life more than once and, as you know, I have a manuscript in hand. He hasn’t stopped riding, or making beautiful photographs, or writing amazing prose. He hasn’t stopped gently guiding me in my work, and in my life and, of course, on my bike.

In his honor, I’m posting the story I sent him those ten years ago, gently edited across the years. Little did I know then that you would end Matthew’s life a mere 6 months from that ride. That Tom, one of my younger brothers, was already in your deadly grip, would also be dead at your hands in 6 short years.

Living can be painful. It’s also beautiful.

Matthew began calling me nightly from the Abbey in Newark NJ where he lived after our brother Tom installed a land line that would dial a number when you spoke a name.

By this time Matthew’s brain was devastated by the advance of dementia. And yet, each night at 9PM he called. “Ann,” he said, and we were connected. He called like clockwork. He was getting ready to go to bed, helped by his caretaker.

“Matthew” the screen on my iPhone announced. Wherever I happened to be, whatever I happened to be doing, I answered. “Hi, there,” I said into the silence. “Oh, hi. Where are you? “ He asked this one question whether I was halfway around the world or had just left him.

I told him where I was, what I’d been doing. He listened. When I stopped talking, the silence held us close. “Sleep tight. I love you,” I said finally. “Good night, God bless, much love,” he responded - every single time - a call and response that lasted for months.

When he and I were 9 and 10 years old we moved to New Jersey into a very large home with lots of bedrooms and bathrooms. For the first time in our lives, we had our own rooms, mine directly across from his at the end of a long dark hallway. I felt alone and afraid.

With our doors open, we could hear each other across the divide. Every night I whispered to him, “Are you awake?” and he would answer that he was. I asked over and over again. “Yes,” he patiently answered over and over again, until finally I fell asleep. This ritual, this call and response, repeated itself days into weeks, into months.

Now it was him, calling to me across the miles, listening to the cadence of my voice, waiting to go to sleep. Was he afraid in the dark night of his erasure? He couldn’t say - that ability already gone.

I was afraid. Afraid for him, and what lay ahead for him; and for me, for what I would face too soon – his leaving me forever.

It was a Sunday, almost 3 months later. It was 6PM in Portland. Reflexively, I picked up my phone.

The screen was dark.