My husband died at home in June of 2002 from ALS, Lou Gehrig's Disease.  He was the greatest joy of my life. To have found it once was a miracle, to expect it twice...

This is a love story.  And, a story of thanks.

When It Is Time To Go 

...Like glimpses of forgotten dreams ~ Tennyson


I will forever remember those words, the last of tiny white petals to bloom from his soft pink lips. How they shot over and through me - not a rain of flowers, but a torrent of water - engulfed by waves. I remember the numbness, the fighting for my breath as I felt the sea pull me under, my need to repeat the words, seemingly through mouthfuls of sand, when, in fact, they were as clear and as deafening as any words ever spoken.

"I think it is time to go."

"It's time to go? Okay," I said in a voice I did not recognize. A voice as fragile as cracked glass, as surprised as a newborn.

No matter how hard you try, no matter how much you think you've prepared, you can never be. Not for those words. How can you? They are the beginning of the next world, the ending of another - only one of which you can be a part. At that moment, again, the universe has changed. Shifted. Hold on! You know what the next wave will bring, the power and force of its energy. It will take you under, swallow you low into its belly, if you don't find your anchor. Now is the time. Toss it over and let it settle, deep.

He nodded, weakly. His face resigned, sad from the words, the finality of his decision, the letting go.

From what depths does one pull in finding the strength to utter those words? How does one feel when the final decision is made, when the leaving behind, however painful, is far more preferable and right than the unknown?

I had never seen him look so sad. Even in the freedom of decision, of releasing himself from stillness and torment, his eyes were shadowed with sorrow. But as the days went on, that would change. The color that began to bloom in his hollowed cheeks was that of acceptance, of peace.

There were some days when he would smile. No bodily movement, no voice, just a small blooming of the lips - a flower, one last time from this earth. Was the flower for me? Or was it what he was just beginning to know as his new door opened little by little each day?

He stopped eating. That was how he would release himself, let go. In a body that had nearly disappeared, frail, shattered, weighing almost nothing at all, it still took thirteen days. Thirteen days before he joined the wind - blowing like dandelion spore, riding the thermals on a wish. His wish.

It is hard to go about your business when your husband is dying in the next room. Does he smell the food I prepare for myself? Does it make the starving process all the more difficult, to resist sustenance, resist life? It took me a couple of days to fully digest that one - the different dynamics playing out in each room, the sheer determination of each of us separated only by a narrow threshold - one of survival, the other of death. But, I had to eat. I had to retain my strength, my health. Somehow, amidst the turmoil of the last few years, I remained strong, my health intact. I could not falter now. I still had things to take care of - John, his final wishes, my life. If only one of us was to survive, then I would walk away as strong and as unscathed as I possibly could.

As I look back on those last days, on my questions, concerns and heartbreak over the processes of living and dying, I realize that much of what plagued me were the philosophical questions and angst of a healthy human being.

When one is dying, when one has made the decision to release himself from disease or illness, the mind must surely function in a way that we cannot comprehend. It is not ours to understand.

One evening, I asked John if the smell of my dinner bothered him, made it more difficult. He smiled and whispered, "no." There appeared to be no internal struggle of want or need for food. The idea of sustenance, hunger, satiation, were no longer part of John's world. When I accepted this, to the degree where one can understand such a foreign concept, I was able to abandon the feelings of guilt, despair, the need to feed and nurture him even though I knew it could not or should not be.

Each day, a new wave rolled over me. When I felt myself going under, I would slip out onto the deck, if only for a short while, and regain my footing from the temple of nature that surrounded me. Always, the natural world had sustained me, and now more than ever, as my husband lay dying, as my closest friends and family were thousands of miles away, Nature's reassuring embrace kept me grounded and forever grateful.

I missed the sound of voices, of interaction, of the days when John and I would engage in hours of effortless discussion about everything and nothing at all. But in exchange for lost voices, I received the gift of birdsong, of wind rustling through leaves, the gentle lapping of waves along the cove, the delicate rift of butterfly, bee and hummingbird wings.

I watched the rosa rugosas seemingly explode overnight with hot pink roses. The deep purple lupine in the lower field grew tall and sturdy. The crabapple blossoms came and went, the lilac bush filled the house with sweet perfume, and a multitude of fledglings flew in and out of the garden, testing their wings, the miracle of flight.

And always, there was Africa. In my spiritual connection with nature, the world outside my doors, the reminder and memories of Africa were always close to the surface, and yet nearest to my heart.

A week into John's decision to stop eating, he asked to get out of bed one last time. He wanted to watch our wedding video, he told me. It was the last request he made. The hospice nurse didn't think he should be removed from bed, too precarious and painful at this stage, and she offered to bring her own small television and v.c.r. to our home, to the bedroom, and set it up so we could view it from John's bed.

But he would not have it. Once more, he wanted to be taken from his bed, sit upright in the world, and watch a video we had not seen since our wedding day, nearly eleven years earlier.

I remember the last time I lifted him from his bed. I hoisted his small body into the lift and to the air; his limbs and head hanging limp like a rag doll. I wheeled him into the sitting room where I had everything ready for the screening. The wheelchair seemed to swallow him, a wisp of a body more of bone and loose flesh than anything else, his head way too large now and out of proportion, barely able to balance itself on a slackened neck.

I sat next to him. I held his hand. We watched ourselves, younger and healthier then, filled with joy, laughter, and so much hope. He saw his sister and brother, our family and friends. We watched ourselves embrace and kiss beneath a stand of ancient redwoods near the sea, in the city by the bay.

He wept. I choked back tears as I held him tighter, tenderly securing my arms around him, one last time.

Everything then, was for the last time.

What came next, and through our tears, caught us both off guard. We had forgotten that following the wedding day video, was footage from our first date many years before, taken by a friend as we attended the annual Renaissance Fair in Marin County. How young we looked, then. How beautiful he looked. I had forgotten how beautiful he once was. I heard his voice again, clear, strong, yet soft as silk. I saw his healthy, strong body move freely and fluidly. I saw the exuberance of life in his pale blue eyes, hope for the future on our younger, innocent faces.

Innocence is a marvelous thing. It is good not to know too much of what lies ahead - how abruptly the world can end - the edge and drop oftentimes closer than one would like.

We wept together. We wept for those days, for happier times. We wept over the loss of his body, his voice, and our future. But most of all, we wept for the strength of our love. We had not been afforded the gift of time, of hopes and dreams, of growing old with one another. But rather, we were blessed with a love that had endured and blossomed in the hardest of times, sustained us through disease, and even at death, was a bond greater than any other we had ever known. As we often said, our time may have been cut short, but what we had, together, most people do not find in a lifetime.

I wheeled him back to bed. His blue eyes were red and swollen. I kissed him. He fell asleep quickly and peacefully.

In watching him sleep, I felt a small wave caress my body. This one was gentle and warm. It rocked me, easily, pooled around my ankles, then slipped out to sea.


Excerpt from the memoir, In the Heart of the Lily, copyright 2007, Jan Baumgartner

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