March 08, 2014

MARCH 8, 2014

I may not be practical in all matters, but I do know what I feel.  The stories on these pages, of my son Segev’s life, are often filled with quixotic statements in an attempt to entice calm in the face of the storm and paint a picture of romantic propitiatory yearnings, as though we are not truly blessed by his existence.

Today is a milestone of epic proportions, though I find myself reticent in celebrating the moment, as these last months have been quite hard on us all while Segev still remains with pneumonia, already since early December. He is again on IV antibiotics and even on this special day, definitely not feeling well.

My son is a bright light and a heavy burden. Both residing in that sense of responsibility, the desire to create respite and fill the lack of understanding that we share, I of his mind (but not spirit) and he of the world around him, with beautiful experiences while wistful days and tortuous nights have blended into unexpected years.


I’ve never made this statement previously, having always preferred to almost imply, (though I suspect this too is a form of denial) but let it be said with a strong and clear voice, that Segev was born with a condition that simply cannot be outlived. We don't like to say such things but considering that he has reached this point without any glimmer of expectation to do so, the functional diagnosis of Ohtahara syndrome alone is enough. With everything else, (the abundance of medical terminology always swirling about anxiously, not just window dressing) we are in miracle territory.  Typical of this extremely rare syndrome (while there are many causes, most remain unknown), it begins its careful selection of children at birth and hunts down their life force with catastrophic tenacity. Barely a handful sees the age of sixteen but thankfully knowledge is gaining, especially the sharing of experience, to the benefit of all.

When I write about my son, I always do so with a number of additional children in my thoughts, whose parents must go through many of the same kind of difficulties, day in day out.  And it is from within this fortress of exhaustion that our minds are trapped in an altered state, dysfunctional, limping but mostly in a way that is difficult to convey. At any rate, it has caught mine and the contortion, I suppose, may be permanent.  But I keep a keen eye out for good moments and relish every conscious smile or sound my son makes. Often caught in medically or neurologically induced stupor, Segev can unexpectedly surface for a brief moment of consciousness and then sink back to labyrinthine depths, impervious to my best efforts to elicit a response. So each moment is savored, each smile communicated to the relevant parties, each good moment provided recounted, without the need for embellishment.

And how resilient he is, repeatedly surprising in his unrelenting desire to be here, though time and again we have been lulled into believing that perhaps his resolve is wavering. Not so.

When I see Segev’s simple acceptance of what comes, his quickly letting it pass without any undue attachment to pain or sorrow, I am staggered by the simplicity and thus importance of his way. It is something to aspire to. Because the truly great things we aspire to are the ones we can never actually reach, but in attempting to do so, we rise in increments above who we were.
He sits there on a perch, I didn’t put him there, it is undeniable that children like my son, whether born into this condition or being put there through mischance, possess a purity of being that we simply cannot obtain, but that we can decide, is worthy of emulation. This does not mean that they are worth more than you or I, but most certainly not less than you or I.


My most gentle and sweet boy, Segev, today you are sixteen and I am grateful beyond words that you have given me a way to express love, the ability to understand things that otherwise I could never understand, never even knew existed. Nothing should be taken for granted and if we can truly find peace in the moment, nothing more can be asked, nor given.

February 24, 2014

On pain and suffering

I’ve written about this before but it simply keeps coming up so I feel the necessity to briefly touch on it once again. It goes something like this; whenever I have a conversation with another person about my son and they start to get an inkling of how extreme his level of disability is the reaction is always the same, I am asked, “But isn’t he suffering a great deal?”  The related variant of this question is the second most common; “Is it really worth it?”, the idea being that the effort expended is futile, without recompense.
I have been asked those two questions, and only those two questions, whenever my son has come up.  Not, "What does he enjoy doing?" or, "How does that affect family life?"
Because I am immensely proud of my son, I often do bring him up in conversation. Actually it is probably one of the few topics of discussion you are likely to have with me, be you caretaker, physician, mailman or grocery clerk. I bring him up under all circumstances and have made inserting him into a conversation a fine art.
But this begs the question ‘Do you only focus on the negative in such conversations?’  That is a valid point. Since my focus has always been to make him as comfortable as possible and because of his myriad problems the majority of people I speak to are medical professionals, social workers and such, you get into a certain state of mind. So I’d say it is actually a fair assessment.  I know parents who have made the transition to almost exclusively focusing on the positive when discussing their child.  Each and every one of those though, rarely deal with extreme medical fragility. Those that have children with a tenuous grip on life are exhausted and have to work very, very hard indeed at being only positive, (perhaps there is a case to be made for wishful thinking) and I must add, with little success.
Some might think I am soliciting attention, pity or at the very least sympathy. I’ll leave that to be decided by the judgment of others, since it seems, from my conversations, that everyone is rather eager to judge.
But I have come to a conclusion after close to six thousand days (they say, ‘don’t count the days, make the days count!’. Perhaps in a middle ground we can say, ‘make an account of the days’) as fulltime caregiver that my son does suffer… He has a wide variety of pains, many sources to choose from and a plethora of degrees of pain, by which to evaluate the usefulness, the value of his life.
Too bad we don’t apply the same set of standards to regular folk. Losing a son in armed conflict qualifies as life-long, visceral pain.  Heartbreak. Put out into the street after losing your work, home, family. Any mental illness. Diabetes. Watching a loved one succumb to the effects of Alzheimer’s (especially the early stages). All those things are real, terrible conditions associated with ‘pain’.  A dear sibling dies mountain climbing.  True heartbreak can throw a person into lifelong depression. Shall we ask this individual also, ‘Is it really worth it?’
When I said I’ve come to the conclusion that  my son does suffer,  the sentence  is cut off, and restored to its full length reads; But I have come to a conclusion after close to six thousand days as full-time caregiver that my son does suffer, though not more, and most likely much less, than any regular person.
My conclusion could of course be attributed to wishful thinking. I don’t want to see my son suffer, enormous efforts are undertaken to ensure that his suffering is minimized; ergo the stress of seeing him suffer has allowed my brain to concoct internal blinders as a defense mechanism.  That would be sweet if true. But just as an infant has a very limited repertoire in expressing discomfort or pain, so too my son. Additionally, after 16 years of caring, you get a reasonably good idea of how discomfort manifests itself in his crying, screaming and body language. It would be quite impossible to ignore these things.
Secondly, to counter the thought that perhaps in practice I am desperate to see what I wish to see, as I have previously shown on these pages, when I write about my son it is very often about impressing upon people's consciousness, just how difficult and fraught with discomfort his life can be and my frustration, naturally, with the limits of relief that I can provide. I am constantly looking, and often finding, methods of treatment and see the calm and relaxation come over my son, when said treatment is effective. Constantly using curiosity and skills acquired as physical therapist for the last twenty four years, to ascertain if there are areas where compression or limitations cause him to suffer enough that he falls into a stupor, driven by energy draining pain.  I am so hyper aware of changes in his body and demeanor that many medical professionals have smirked when presented with the minutiae of physical problems my son faces. 
There are smiles and songs and cuddles as well. Eyes attentively glistening. But that is another story entirely. I am not attempting to create a sense of balance out of joy and suffering as though to justify his continued care; it is complete anathema for me, to do so. Neither will I go to great lengths to reiterate exactly how his physical suffering should be compared to others’, as though that is a reasonable thing to do, though I have given it a shot repeatedly, in earlier posts.
Most importantly and thus most suspect of course is any discussion of his emotional wellbeing. It is one thing to have pain and discomfort but how we deal with that is something else altogether.  Here I can say only one thing. Whether coming out of a coma after life-saving surgery for a perforated bowel, excruciating pain of a subluxated vertebrae finally finding release or after undergoing painful tests and examinations or the first moment of recognition of his parents or siblings as things return to normal, is not a whimper, not a moan of misery, not a sobbing as he catches his breath, but rather a smile. A whole hearted smile.  
I feel I may have painted myself into a corner, since I can only wish for other parents that a smile awaits them as well, but know realistically that such is often not the case.  I wish I knew a step by step approach to staying positive, I know I could certainly use such a device. Some use prayer to assuage their uncertainty and the related fear. Others are safely ensconced in an acceptance of the limits of what is possible given the little we can know about how our child works. I am happy for them, do not discount or belittle those approaches in the least. For myself, and only for myself, I feel that philosophies are wonderful motivators, until someone gets punched in the face. Each lashing of fate that your child gets opens new wounds that buckle your knees, whittling away at any confidence gained.
Obviously, finding that balance which gives us tranquility is something that, with my son approaching his sixteenth birthday in poor health, still eludes me.

February 22, 2014

Channeling Lucretius

My Son

If he could speak I might not appreciate what he has to say about the way in which we see life without much clarity, not to say, in morbid disarray, since pureness remains an enthralling concept, where we place our hopes there so that we can rise above the mundane. The disarray I mentioned is a state of mind that separates two worlds, namely his and mine.
You see, his mind works quite differently from yours or mine, dwelling in a labyrinth quietly framed in courtyards of impressions, never litigious, unable to remove themselves from their ensconce, no less joyful or willing, but simply kept within the membrane of their isolation.
When we smile there are many ways to apprehend the relationship between thought and feeling; as schism or collusion, petrified union or the robust shaking of a schoolyard bully, seeing what change drops from our pockets.  But for all the incomprehensibility of his perception, he is the word. He is the feeling. There is no preceding thought of it, no ‘this will be now, in a moment’s time.” 'Now' does not advance, neither retreat.

Notes:  While we have memory to embroil us, how much can he be aware that there is, a priori an active thought process? When we think, ‘The sky is beautiful’, we are simply categorizing. Name tags stored to remind us of our experiences. We think that in giving this name tag value is secured to our experience, which in turn has origins in the schematics of past experience, so that when we are due our next, ‘beautiful sky’ moment we have a frame of reference by which to measure. Even adding a measure of worth in the present experience because the tagged memory brings itself to bear.
But without an actual sense of before, the now and future, each experience carries its own unique ‘now’. So there is no precedential fear but also no expectation of joy or disappointment. No warbling anticipation to have flourished in our endocrine system. There is only the moment itself.
And many would rightly say, this smacks of a lack of conscious investment, as though that is a bad thing.  In just being, there is no recourse to action, no understanding the context. What a fearsome state!  The voices rise in indignation: “This is what separates us from the beasts!”  Well, while we love to point out how different we are, in essence how superior, the subject of how we are very similar to them is rarely given perfunctory recognition.
Part of this is due to the proportion of importance given to conscious intent. When conscious intent is motivated by the ability to distinguish the value of an object in context of a desired action or outcome, we have a manifestation of Will. We have personhood as some would have it. Without this ability to value one thing over another in order to achieve a particular result we have effect, but not affect.
No need to reduce this discussion to that of who is a person and who is not, simply because there are no grounds for it. For the non-communicating individual has not been heard. The deaf-mute who has not learned to sign was considered a brute, a throwaway of little value, certainly not one who had attained the stature of person.  Lest we remember the ignorance of our yesterday, we are inclined to think ourselves wise today.

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