Somewhere the Sky touches the Earth, and the name of that place is the End. African Saying (Wakamba)
There was a storm that evening. From what the hospice nurse had told me, and from what I could see, John would likely die during the night. We rarely lost power, but this night, John’s last, the thunderstorm downed the power lines and I sat alone in the dark.
I lit a few candles and an oil lamp and pulled John’s wheelchair alongside his hospital bed. I sat in it. Beneath me, I could feel the curves and depressions he had worn in the seat. I couldn’t help but laugh, albeit weakly, at the idea that I was sitting in the dark and there was no power. There was much I had yet to do, to take care of if John died this night, and not having electricity would make it all the more complicated.
His medication had been administered, a low dose of oxycontin. John had made the decision not to have morphine or an even higher dose of oxycontin. As he had told me many times, he didn’t want to spend his final days in oblivion – he wanted to feel, to experience his last days of life even if it meant dealing with excruciating pain. At this point, however, John appeared to be comfortable and no longer in pain. Barely alive, a frame more skeletal than human, John’s body had deteriorated to nothing more than a mass of excess skin and protruding bone. We guessed his weight to be at no more than seventy pounds, probably much less. His five foot, ten inch frame seemed to have shrunk, he looked small and fragile, yet his head and hands seemed too large now and no longer suited his frail body.
My lists were nearby. There were things to be tended to, John’s final wishes. I was relaxed, somewhat. I suppose at that moment, just hours before the end of all I once knew, a sense of calm prevailed as there was nothing left for me to do but wait. Only after his passing would the taking care begin yet again. I had approximately one hour following John’s death to spend with him, privately, before I had to make the calls.
Upon John’s passing, time would be critical. After his diagnosis, we agreed to sign papers that would allow John’s brain and spinal tissue to be harvested and used for ALS research. We were fortunate to have one of the leading ALS doctors in the country and I knew the protocol that must be followed to ensure that John’s tissue was promptly removed and sent to the labs in Massachusetts. Because of this timeframe, I had much to take care of in a rather short period. A few days before, I had contacted the appropriate doctor in Bangor who would remove John’s tissue samples. I notified John’s doctor and research assistants in Boston as well, letting them know that the samples would shortly be enroute. Auto pilot. A life too surreal to be anything other than a dream.
Shortly after ten o’clock, the power came back on. For the next couple of hours, I sat at John’s bedside, his thin, damp hand in mine. I talked to him. I told him things that are only spoken once in a lifetime, singular words of comfort and love and deep gratitude. I thanked him.
I watched - watched how his body went through the final stages, the transformation, the limbs that first went cold, the change in coloring, his breathing, the beads of sweat that collected on his forehead, upper lip and eyelids as his head burned with heat, while his feet turned to ice, and from white to blue. It was not so bad, really. There was a strange and comforting peacefulness about it, about the dying process. We are so fearful of death and dying, and yet to see it up close, to tenderly touch it, breathe it, to experience it in all its strange, ethereal beauty and naturalness, was something I had not expected. I was not afraid. After many years of illness, I had accompanied John to this final moment. I had cared for him at home, and now, with his fading hand in mine, was watching him die in his own room, beneath a roof that had held so many joyful memories. He had the person next to him who loved him most, and as his life slipped away, I could feel his energy emanate into my own. He would forever be part of me now. I felt fortunate.
When I could no longer keep my eyes open, I climbed into bed. Our bed, once. I had pushed it into the middle of the room so to be near his hospital bed. I could not sleep. I tossed and turned for some time, anxious, my skin prickling. Then suddenly, I couldn’t breathe. I was beginning to panic, the sounds of John’s quiet, shallow breathing became deafening as I could not catch my own breath. I pulled my pillow over my head in attempts to drown out the sound of the shallow breathing beside me that for whatever reason, was suffocating my own breath.
For a moment, I felt as though I would go crazy – I couldn’t breath as it felt as though John’s final breaths were my own, pulsating sound roared all around me – and then abruptly, it stopped. I felt a sudden numbness. I removed the pillow from my face. I caught a deep breath. I called out to the dark. “John?” I whispered. What had I expected to hear back? His voice had silenced long before. I knew, but even in the knowing, one last time I had to say his name. Out loud.
I turned on the light. He was still and silent. I sat on the edge of my bed and let out a few muffled cries and moans and then I said to the air, the room, “thank God it’s over!” I wept again but only for a moment. Relief. The long suffering was over. For both of us. I stood up and held his limp hand. I smiled at a face, that even in death, was kind and gentle and finally, at peace. Tenderly, as if touching a newborn bird, over partially opened eyes, I smoothed his eyelids down and shut. They were warm and moist. I lit a candle. I turned on the radio near John’s bedside and let soft, classical notes dance around the room. I noted the time, wrote it down. I removed John’s wedding band lest I forgot in all the rush of thought and emotion and things that needed to be done. I pulled a pair of small scissors from the bureau and snipped three wavy locks of hair. He had such beautiful hair. I smelled each one, took in a deep breath of scent from his curls, John’s smell. I removed his catheter and washed him gently with warm water. I massaged lavender-scented lotion into his withered skin. I kissed him, lightly and for the last time, on his forehead. He was gone.
The first call was to the hospice nurse, Ginny. She was on her way. She would notify the funeral home, the caretaker that would transport John’s body to the medical lab in Bangor. The next call was to Parker, one of John’s closest friends and my crutch through the worst of days, the final days in caring for John. Ginny arrived first. She held me tight, I held even tighter. Shortly after, Parker arrived. He made sure I was okay then asked if he could see John.
The morning unfolded into a beautiful June day. In the early morning air, two osprey soared over the rooftop, circling and screeching. They circled above the house for some time, their cries louder and louder. As the screeching became nearly deafening, we stepped onto the deck and watched them soar – it was as if they were bidding a final farewell, a tribute to a man who loved all things wild. John loved the osprey. Each May, when they would arrive back in Maine from their wintering grounds as far south as Latin America, we would get in the car and find the handful of osprey nests dotting the Blue Hill peninsula – just to see – see if they had returned, unscathed.
The air was filled with birdsong. The rosa rugosas were in full bloom, an explosion of pink. Sturdy lupine choked the fields below. The new sun was gentle and warm in a sky of liquid blue. A soft sea breeze lifted off the waters of the reach. The three of us stood on the deck and looked up, out and around, and at each other. No words were spoken. None was needed. It was perhaps the most beautiful morning we had ever seen.
The pair of osprey, who circled overhead at the news of John’s death, stayed. They built an immense nest, an architectural gem, at the top of a massive pine on the land next door. From our deck, each summer, the nest is in perfect sight. The osprey soar and screech, fly in and out with fish from the cove tight in their talons. I can see their every move, their mating rituals, feeding, the caring of their young. They have been here for three years.
(Note: You can view every article as one long page if you sign up as an Advocate Member, or higher).