For a brief period there was a religious woman who came through social services to help with Segev. She had the right spirit but no direct experience with a child like my son, although she had several children, one of whom is somewhat disabled and another with more serious, autistic spectrum issues.
We had several attempts at discussions about ethics in general and of disabled children but the religious aspect of her persona was rather overbearing. If every opinion you have stems from a quotation of a religious text, no matter how wise, I tend to lose interest eventually. Everyone can quote scripture, but to develop your own opinion about troubling issues and be willing to discuss them lends a necessary authenticity to the encounter. Her heart was in the right place though and she actually came up with some unique and practical suggestions for Segev, even going so far as to berate a social worker for not activating all the resources at her disposal in order to ease our daily lives just a little.
Besides also running a pizzeria and working in a hospice she volunteered for the rather macabre duty of washing the deceased, as per Jewish tradition. I believe some Christians do this as well. The first time I encountered such a practice was in a book by the Flemish author Hubert Lampo, entitled “The return to Atlantis” where the main character, a physician, describes the ritual washing of his mother after she has passed, while “unused vials of morphine stood on the nightstand”. I was so taken by his book that I contacted him. After being impressed by the sample I sent along, he authorized me to translate his book into English, but I was already deep into my studies of traditional Chinese medicine and never completed more than the first chapter.
In the intervening years I came to see up close the moments prior to death for a number of people. Their breath slowing, becoming barely noticeable. After one particular experience I realized that whatever identity we hold, it leaves the body before the physical shell actually reaches the endpoint of biological presence, after which I have found myself on several occasions leaving, by chance or design, before that last moment occurs.
I was involved up to that endpoint, both in a personal manner and as a professional, to relieve suffering. I’ve also been witness to my son slowly decrease his breathing until finally, without any resistance on his part, there was no longer any discernible movement, only to act quickly, on occasion frantically, to revive him.
I have sat, as in the past few days, compressing his chest and back hundreds of times between my hands, in an attempt to compensate for his insufficient breathing, to expel the buildup of CO2, to expel phlegm, to circulate air into his collapsed left lung.
He is breathing quietly now, lying on the couch with his monitor and oxygen after a long day of taxed rapid respiration that had me thinking very decidedly, ‘how close is the end, really?’ I asked my eldest, as if he could have the answer, “is there something else I could be doing?”
For hours on end I must watch his upper chest sink inwards due to the extraneous effort to take a breath. There are other options, none of which strike me or his mother (at least there we can agree on something) as viable. Thinking about these things do not see me make less of an effort to bolster his health. It is hard to explain unless you yourself have had to wrestle with these moments.
You can never truly be ready, never understand the meaning in the moment until it happens. Just as during the times that I have had to resuscitate my son, or make decisions to change the outcome of a life threatening episode, sometimes having had luck on my side, I know there will be a similar moment of intent and action but where, like that which occurred for children similarly afflicted, my decisions will no longer have any bearing on the outcome. I hate that moment with all of my heart. Not because it will be that catastrophic moment when I finally and utterly fail my son, that moment has already come and gone, but because it is an end which comes to my son vaguely, brutally and dishonestly, without him being able to understand. Without the knowledge of saying goodbye. I’m not talking about the closure of those left behind, that ego-driven but excusable need for us to tie off ends so that we can feel more comfortable.
But for a boy who has “slept his life away”, barely conscious for the better part of his fifteen years, filled with pure emotion and expression of love when ‘present’, the last greatest triumph would be, in my eyes, to acknowledge the connection with those that love him and that he loves, even if in the context of ending that connection on one level. Spirituality is a pauper’s kingdom, when knowledge of connection is implied, but not visible to the naked eye.
When my mother passed away I was airborne flying back to Israel and yet in that one particular moment I felt her hands press on my shoulders and her lips kiss the top of my head. When my mother-in-law lay dying on her bed I saw the faint outline of her body hover over her though she had not yet taken her last breath. But immediately I left her and went home to tell her daughter to rush to her side. I came every day to my patient’s home to treat his pain but simply did not show up that particular Friday morning that he passed.
Watching my son breath with such effort is hard in the extreme. Opinions about what can be done differ and there really is no right answer. Despite the morose subject matter I am not giving an inch of resolve here, merely expressing the feelings that arise from the aftermath of long hours treating and waiting. Nothing has changed and so I try not to dwell on feelings of inadequacy, mull over mistakes or grow stagnant from frustration.
“He’s been taken good care of, you can tell”, the head of ICU told me during his surprising visit to my home.
“How do you know?” I asked him.
“His skin, see how well his skin looks. You don’t normally see that in such a sick boy.”