February 12, 2015

With the coming of morning, all fires die out

As some know, I am on call twenty four hours a day, seven days a week. For the last five years caring for my son has meant that about 90 hours a week I am no more than two arm lengths away from him, night and day. This is due to the fact that five years ago I made the decision to significantly reduce the amount of time I physically take care of him, as I was no longer able to properly function under the strain of 72 or even 96 hour shifts. Help from outside, whether family, friends or healthcare workers was not forthcoming. Those hours are now once again in flux since Segev's condition is certainly not improving
His crises of pneumonia and severe pain, seizures and intricate care are relentless but also increasingly difficult to manage. Yesterday was the first time in seventeen years that I had to admit defeat. Perhaps I've been beaten before (memory is a fickle thing) but yesterday was the first time that I consciously said, no, out loud , 'I can do no more'. The particular instance in question was not the constant twitching of his limbs caused by pressure on his deteriorating spine or the general lethargy from lungs so overflowing with secretions that he actually appears as though drowning. That was the day before yesterday. Yesterday, despite proper chest physio, including the use of an ambo bag, despite that eventually air moved reasonably well into his right lung and, as much as is possible, into his collapsed left lung, his oxygen level simply would not return to status quo. He was at his mother's, the day I am supposed to rest up before going to 'work', as physical therapist helping others manage their pain, the work I get paid for. And so, after approximately one hour of treating Segev I raised my hands and said, 'that's all I can do'. Segev was just conscious enough to  moan as I changed his position, placed him once again on his back, but I doubt he could sense my gently stroking his hair or the kiss on his forehead and cheek that I left him with. If there were any further deterioration I would hear about it. If he remained stable, it would be with this new paradigm, a reduced state of health to accept. There will be no more pondering, no more excitable delving into research and arranging meetings with professionals who could possibly, just maybe, offer a glimmer of encouragement, no, just acceptance.  But he improved slightly, just enough, and I let out a sigh of relief;  'The worst is yet to come', remains a little further off, for a little longer.

Have you seen the film "The Road", with Viggo Mortensen? If you haven't, then don't, unless you want to be thoroughly depressed, disgusted even. The film is sometimes over the top, as in, zombie film over the top but the journey that the father and his son take through an apocalyptic wasteland haunts me. You see, without a sense of exaggeration I identify with that father who, in putting his son's survival above all else, is doing so at the cost of his very own life. I see a reflection of the father in myself, even in the mistakes made which ultimately put his son in increased danger. 
Like me, he puts his son at the center of the universe. There are advantages to this mindset and the internal logic of trying to extend time until the inevitable demise of my son. But internal logic is always blinding, like diving into the unlit corner of a narrow twisting mountain road on your motorcycle (as I found myself once upon a time), suddenly confronted with an oncoming car, its high beams shining fully in your face, knowing that if you want to survive the only course of action is to stay the path. Once you commit to that perilous arc, head, though protected by helmet, precariously protruding in the direction of the oncoming vehicle, you must stay the course. Any deviation, other than gingerly pulling your head to avoid smashing it on the A-pillar, will result in tragedy.

Embracing the internal logic of preserving the life of your catastrophically disabled and medically fragile child, it is there that you find absolute meaning. Therein lies a strange comfort zone. You know that there can be nothing more worthy than protecting your child, from his diseased state, from endless incompetence of uncaring medical professionals, working yourself into a decrepit shadow of worry and exhaustion, working to give your child the opportunity to just smile once again. That is, until that moment may come when you realize the effort required is no longer sustainable. The smiles become a memory and finally your own aching back and wrenched neck force you to take a good hard look at yourself and you realize that the years of chronic sleep deprivation have destroyed large swaths of memory and you are fully aware that hallucinations, even for a split second, are a regular presence in your daily life.
Gone are Christmas holidays, wiped from memory in a way that even watching video of it will not stir an inkling of recollection. Some 'ghosts' of memories remain; you know, absolutely, that you took your kids on a trip, had a good time, laughed, told bedtime stories, but you can't actually remember doing it. The level of frustration only increases because those memories were precious.
But you stay the course. Now, not because you know that any deviation will result in disaster but because it has become the only place that you know how to do things. Everything else feels strange. Your reactions lack context and proportion. Then you realize, as though thrown a lifeline (perhaps having been thrown several before by others, but unable to recognize them for what they are) that it is exactly because of making the care for your child the center of your universe that the price has been an ever increasing self-imposed ostracisation. And you are now torn between retreating further into your shell, building more walls of protection, from uncertainty, from weakness, or, to acknowledge your weakness, your inability to further withstand the battering of waves breaking on the foundation of your hope; no longer that you will be able to maintain your child's health and happiness, if you would just put a little more effort into it.
But the light and warmth of that fire is dying out. Not for lack of understanding, not for lack of wanting, but because in an effort to stave the inevitable you have burned up all there is to burn. You have gone so far as to willingly scorch the very earth you stand on, to feed that fire.
At the center of the Universe there is a light, a special kind of light that few have seen because the very act of seeing it, blinding, exquisite light, burns. Memory, kindness, thoughtfulness, happiness are all tinder to this light. 

January 10, 2015

What you hear on the winding path

Facebook has reminded me that I have not posted an update of Segev for 41 days. What is there to post about, I wonder. A moment’s smile? A distant dream? While this blog is merely an empty echo with the occasional instinctual spasm of pride and hope.

What I have to report is that pain and stupor have become my son’s mainstay. That pneumonia is not measured by the number of recurring events but rather as a constant permutation; either mild, our 'staved', or ‘severe’. Presently, once again it is severe and intravenous antibiotics are little more than a bet placed on the roulette wheel. So it might surprise you then to note, in the following paragraph, that I do not feel weighed down by the future, even if the ‘F’-word, Futility, creeps ever closer to the entrance of my vocabulary. I honestly did not believe, with the experiences of this past year, to see my son alive in 2015. But on to the next paragraph:

Those grand vistas, as seen in the Lord of the Rings films, where strong willed individuals traverse a dangerous mountain pass, encompasses the dramatic image of a mythic journey many of us can relate to.  As I am standing on the precipitous trail, I am afforded no sense of ease or assurance as bits of rock and gravel are shuffled over the edge and disappear into a seemingly endless abyss. I can’t recall the feelings along the long way I’ve traveled; only images remain whose veracity is constantly called into question. Their relevance at any rate, equally dubious.  Up ahead lies the meandering path that may lead to false peaks and I am certain I do not want to climb any higher, because the mountain top is not my goal. Who, indeed, can say that scaling that mountain would be an achievement worth boasting of. And the truth is, of course, that the precipice, the path and the summit are all one, because it is in each step we take that we define our experience as a journey. Where it will lead is not known, (and so I do not know why I am here) but as I gingerly traverse the precarious causeway I know it will lead to decisions that define the place of both ‘good’ and ‘bad’ in my life, embracing the mythical nature of this journey.

Life can have a vengeful sweetness to it, as I prefer to see it, rather than a conglomeration of unfortunate elements that demean, lay waste to our beliefs and leave us in ruin. I’ve only realized this recently when I heard the following words, uttered by no one, echo in my head; “You have not let down your son.”
I can’t overstate how strong the feeling was that accompanied hearing those words, not of accomplishment or relief, but of confidence. Not a personal confidence mind you, as though henceforth all my decisions would necessarily be the right ones. Rather a sense of proportion borne of that natural sequence of events which have seen my rage, against the physical deterioration my son has suffered since birth, placed on that path high in the mountains, breathing rarefied air, understanding that the summit is not my goal, the abyss is not to be feared and the path is only as important as each moment that I am alive with my traveling companions.

And as a reward for your dutiful reading, a moment of bliss:

December 29, 2014

I, the judge

This post was originally planned for publication here on the 18th of November 2013 as a farewell to blogging. I offered it as a guest post to 'Bloom' blog where it was released in somewhat simplified form.  Here is the original entry.

I have to wonder sometimes at the audacity with which we are judged by others. Of course it happens to us each day and we are even guilty of it ourselves but nowhere can it be more alarming then when we feel our children’s very lives judged because they are severely disabled. As a parent providing round the clock care for my son for over fifteen years there are many constants in what has become our tiny, nearly hermetic life. Unfortunately judgment is one of them.

Often I have heard the question phrased, ‘what is the point?’ when discussing the care of my son. ‘Isn’t he suffering?’ is also asked, sometimes in tandem as though to drive home the point that I really have no reason to be taking care of him all these years. “You have no life”, is supposed to be the nail in the coffin, I suppose. Because it seems incomprehensible to others, (perhaps they are well intentioned in their concern for me) that a life of providing extreme care for your child could be even more worthy than it is difficult. That in this life experience there is place for personal growth and the opportunity to find an indefinable connectedness within the deepest levels of humility and indeed, to define our humanity.

Each day my son has countless seizures and suffers respiratory distress. Multiple sessions of respiratory therapy are needed and he must be fed, toileted, massaged, repositioned and given multiple medications throughout the day. Surgeries have left him scarred and debilitated as his paralyzed body slowly collapses in on itself.

Not strangely, the difficulties encountered as such have changed my outlook but sees me grieve for my encounters with ignorance concerning those difficulties when people feel the need to project negativity on our lives in an entirely thoughtless manner. From physicians who have mustered, “you should think about having another child, don’t bother with this one” to bioethicists who maintain that a sick child, if also disabled, simply does not possess enough merit to live. The consequences of the lives of such children is parlayed into a sense of having no ‘cause’.

For years I would try to convince people, gently pointing out the ‘good’ moments as counter argument. His obvious will to live; the need to care for someone who has no ability to do so themselves.  I would never invoke the ‘sanctity of life’ dictum, so frowned upon by many academics. I would not mitigate my indignation with such statements since after all, we are mature adults simply discussing matters dispassionately, aren’t we? Emotion being the harbinger of mistakes; it creates an air of fallacy, so we must remain cordial and exact and correct, yes?

In The Netherlands they have already found solutions to this matter – without any public referendum, where the bioethics of utilitarianism holds sway and the term, “unbearable suffering” has become the commonplace catch-all phrase to justify encouraging parents to authorize “assisted dying” of their newborn, disabled children. 

But I understood over the years of discussions and defending my worldview that their position is based on more than one omission. One, being that we are human beings still caught in a process of development and indeed, in need of development. As evolved and evolving beings we can look to progress in regards some of our most lofty characteristics, such as caring for one another and the acceptance and the acknowledgment of true equality, as integral to such introspection.  It seems that the ethics behind arguing ‘worth’ of a disabled and ill child has them categorize equality simply as “sameness”.

I no longer make attempts to defend my position to the ‘uninitiated’ though and my response is simple: “Try it.”  Raise such an extremely physically and mentally compromised child and then, and only then, tell me what understanding you have reached. You cannot simply make statements with such deep ramifications if you lack even basic knowledge of the subject matter. 

Lacking such opportunity or inclination, do the next best thing in order to have an informed opinion; speak to parents who are raising and have raised such children. Yes, speak even to the parents who have lost their child. Speak especially to them.  Ask them about their experience and I dare say you will not find someone who weighs in solely with regret. Ask them if it was worth it.  Though many will be hard pressed to find exacting words with which to phrase such, ask them if it has contributed something not merely tangible, but essential to their lives.

I doubt many parents, when their child is given a strange look at the park, or see someone walk by with forced stare locked firmly to the ground, embark on a discourse of bioethics with the perpetrators of “the look”. But an inner conversation will most certainly take place, each time.  Mostly those individuals who give “the look”, are not in the least bit nefarious in their outlook.  I am more worried about policy makers such bioethicists who sit on medical boards, like the ones in Great Britain, Belgium and Holland, or someone such as Peter Singer in the United States who cloak their severe bias in reasonable sounding arguments. As Horace called it, ecipimur specie rectie (We are deceived by the semblance of what is right).
I think if ever you encounter such questions over whose life is worthwhile we should be most wary if we are asked to rationalize our reasons. Because perhaps then the next question will be, “given the choice, would you do it again?” epitomizing the moral bankruptcy of such questions with its oversimplification, from an uncontrollable urge to quantify human worth with near mathematical precision. While those enthralled by the technological information age wonder at the ability to express the human genome by a series of ones and zeros in a computer, this does not imply the right to reduce our very real experiences of love and caring in similar fashion. 

Actually allowing the experience of caring night and day for a disabled or otherwise compromised person to change us, is quite an exceptional and worthy endeavor. Especially in light of the fact that despite the appearance of constant change around us, our natural reaction is to recoil from change. Change makes us uncertain and parents willing to partake of such a life are the very definition of courageous pioneers. 

I have seen the question, “given the chance, would you do it again?” on forums and in comments to news reports concerning the catastrophically disabled or ill. The question is brazenly touted as a trump card to silence those who whimper and mumble, as I did, with pitiful defenses of “value”. 

Would I do it again, if given the choice? Allowing my life to be turned upside down and inside out? To lose financial stability, reasonable certainty in life, and comfort? To see aches and pains and chronic fatigue turn to ailments. To see others continue their lives with social connections, vacations, friends and knowing, knowing that I would once again suffer the heartache of those moments when my son’s life seemed to slip away, only to marvel and be filled with gratitude as he bounced back? And until when? Would I share in those simple moments of connection, when life is reduced to its most valuable elements, as has been felt by so many parents in similar situations?

Yes. In a heartbeat, I would.