The End of Form

How comforting it is to know our name first thing when we wake up each morning, to know with certainty the identities of those around us, to know the date, month, and year, and know our apartment number, the street, city, and country where we live…

Each step in the unfolding of BePeriod has been a venture into the unknown. There isn’t a blueprint for establishing this kind of school, but even so, a few things were clear at the outset. We had accumulated a vast body of knowledge and methods for applying this knowledge that were not generally known. There had to be people like us who would greatly value what we’d learned if they knew about it; and the widespread availability of online access presented an exceptional opportunity to reach out to them.

Seven years ago, inspired by this perceived need and opportunity, I gathered together a group of practitioners willing to meet this challenge.

Unexpectedly, our endeavor suffered an early blow. One of the members of our group, a woman in her thirties, was diagnosed with stage four cancer. Our plans were laid aside while we dealt with the painful and undeniable reality of her imminent death, and stayed by her side  through the last months of her life.

Our friend’s decline was alarmingly rapid. From day to day, the active and vivacious woman I had known for over a decade quickly lost weight, mobility, and energy. Soon, she could no longer do anything by herself and had to be continuously monitored and assisted. We divided this responsibility among us, and so one afternoon I found myself alone with her in her room, while she—frighteningly skeletal by now—lay on her bed gazing blankly at the ceiling.

There is a particular type of ungratifying waiting unique to the terminally ill. In most other kinds of waiting, the burden of having to wait is at least lightened by the expectation of a worthwhile future reward, or at least a resolution. But for the terminally ill, waiting represents just another installment towards the infinitely greater price of dying. With the best of intentions, the bystander has little with which to console and comfort the person on this Via Dolorosa.

At one point, my friend turned to me and gestured something, as if too weak to speak. She was asking my help in rising from her reclining position. She indicated the order of this ordeal: the legs were to go first, then the body turned, then the torso gently and carefully lifted, then the feet brought down to the floor. In this way, after a process that would have taken a healthy person seconds but took us several minutes, she was finally seated on her bed in front of me.

She heaved a deep sigh and said, “Today is better.”

She looked me in the eyes and I was struck by the vitality in her gaze. I saw life, and endurance, and identity. Here was the person I had known all these years! Although the body had shrunk beyond recognition, the eyes had remained the same; she was still herself.

“I know who I am,” she said, “I know who you are,” she continued thoughtfully. “I don’t know what day of the week or month it is. I think I know the season. But yesterday…”

She trailed off here and I was given to understand that yesterday she hadn’t known any of these ordinary facts, including who she was.

I had little doubt of the pain my friend was experiencing. The sound of her moaning could be heard throughout the house each day and was a testament to her suffering. Nor could there be any doubt of the emotional pain involved in her knowing she would very soon depart from her loved ones. But until that moment, I had not considered the pain of disorientation, of losing touch with the daily forms we take for granted. How comforting it is to know our name first thing when we wake up each morning, to know with certainty the identities of those around us, to know the date, month, and year, and know our apartment number, the street, city, and country where we live. These countless forms lend us an identity crucial for our daily functioning, and yet they are all on temporary lease. One by one, they must each be returned as we draw close to the point of death. Indeed, their loss is in itself as much a death as the loss of our physical body.

Pressing my friend’s hand firmly and gazing at her lovingly was all I could offer in response. She pressed my hand in return and returned my gaze. We continued looking at each other until a wave of fatigue spread a blanket over her vitality, forcing her back to lie down and rest.

This would be our last exchange. Her decline would continue steadily until a few days later, we were all awakened at night and rushed to her room to witness her taking her last breath. When I had come to her bedside, I had come to help, to comfort her, to give whatever I could,  and yet I had been the beneficiary. My friend’s vital gaze looking through a skeletal body would now remain etched in my memory, along with the priceless truth it held:

Death is not the end of life; it is the end of form.