Holding On

Autumn is my favorite time of the year. The spectacular display of color that washes across the valleys and hillsides of the area where I live rivals the most amazing events of nature. This year the display of color and fall of leaves seems delayed by the unusually warm weather we had in late summer and the very beginning of fall. I don’t yet see much color, even though the peak color traditionally occurs in the second to third week of October. I wonder what the trees make of this? Perhaps that sounds like an odd, anthropomorphic question, but I’ve been reading The Hidden Life of Trees, What They Feel, How they Communicate, by Peter Wohlleben, and I’ve discovered that trees taste and smell, communicate, and even care for each other. So I guess it isn’t such a leap in logic to think that trees might have feelings about the delay in the start of autumn.

As we move further into autumn the leaves will start to fall in earnest. Actually, as I now know, the trees literally push the leaves off the branches and use scissor like cells to cut the last tenuous hold the leaves have. Yet the leaves don’t all drop together. Some are pushed off early, others seem to hold on, clinging beyond what seems possible, even in the early winds of winter. Why do some leaves hold on desperately even when all their chlorophyll has been sucked back into the tree trunk and roots? Why do those leaves hold on even when they must know, in some way, that they cannot continue to live?

This speculation about leaves and why some of them hold on so long has me thinking about a recent vigil some of us at INELDA have been involved with. It is with a person who by the measures of comfort, quality of life, and the opportunity for purpose would seem to be ready to let go of his body…yet he doesn’t. He has ALS,

a neurodegenerative disease that ultimately causes the muscles throughout the body to atrophy. He is no longer able to move any part of his body below his head. He can only communicate through a form of blinking. And he can only breathe with the continuous aid of a bi-pap machine that forces air into his lungs through a mask that cuts into the skin on his nose or upper lip as it presses tightly around or into his nostrils and mouth. His life has been narrowed to the smallest movements and into complete dependence. Yet his mind is completely intact—that is the real tragedy of this disease. His engagement with the people around him is time consuming and draining—so it is minimal.

As I sat at his bedside when he was resting, I found myself wondering what keeps him holding on. Other people with this illness that I have worked with would be gone by this point. Yet he continues, one forced breath after another. I wouldn’t describe his holding on as fighting against death. He doesn’t communicate in fight language or metaphors. This certainly isn’t the “fight or flight” instinct, which is more of a short-term response to an immediate or perceived danger. He isn’t holding on because he’s afraid of the unknown or dreads imagined gasping for air—he has dealt with those things. He doesn’t believe that only God should decide when it’s time for him to die—he isn’t religious. He isn’t waiting on for a particular person to visit him, or to resolve an issue, or for his partner to give him permission to die with the reassurance that she will be okay—all of these things have been done multiple times. Yet he goes on.

When I asked him what is keeping him here in spite of the tremendous difficulties he faces moment after moment, he said: “What will be will be.” A fatalistic response followed by a slight questioning rise of his eyebrows that would have accompanied a shrug of his shoulders, if he could still do that.

So I ponder the question internally about what keeps him alive, trapped in his stiff, unmoving body. There have been a number of times that the threat of my own death felt very real and I could connect to a degree of panic at my life ending. But this panic subsided soon and I don’t see that in him. So again, what keeps him going?

What I have come to is that for some people the habit of living, the joy of even tiny experiences, such as the smell of flowers, a particular refrain of music, the feel of his wife’s lips gently pressed on his forehead in a kiss…they are enough not to want to stop experiencing them. The thought of all that just ending may still seem incomprehensible. How can it be that the world and all in it will end for him? How can it be that color and scent and feel stop and will never be experienced again? In the face of not being able to frame this in a way that makes sense to a person that has known nothing else but this world, how can that person allow the natural process of dying to occur. I think I can understand holding on from this perspective.

So I look over at this man who is so close to dying and yet doesn’t. I now accept that his death will take as long as he needs to keep experiencing the world—until the habit of living is totally overwhelmed by the need to let go of his body. The time will come when all he wants is to drop off the tree of life and experience whatever is next in the process of going on. I no longer focus on the sadness of what he has lost and instead focus on all that he can still experience. Why shouldn’t he go on as long as it makes sense to that part of himself that still sees value in his life. As a doula I know my role is to support the people I work with exactly where they are and not to try and change that in some way that suits my beliefs. So I continue to serve this man with gratitude and and a sense of wonder at how strong the force of life is even under he most trying circumstances.