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.


  1. Geneviève Jurgensen commented on a post on Blogger.
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    Yesterday 23:37

    The thing is we like to hear you talk about your son. Often we listen politely to people telling us about their kids, and sort of dream off until they are done. But you make your son very interesting, very present. Of course he is exceptional, but not because he is so extremely disabled and so often sick, so fragile. He is exceptional through what he manages to draw out of you, how refined your relationship has gotten thanks to him, what skills he has obliged his father to invent, what insight he inspires you, and through his unexpected long life, in spite of your permanent exhaustion, what a rewarding son he proves to be! You both have a tough life, and it's easy for me to call it rewarding, while I go to concerts, cinema, dinner with friends, talk over the phone with my daughter and have a quick lunch with my son. But still, when there are news from the both of you on the web, we rush to read it, not out of pity, not out of anxiety (even though anxiety is never far), not out of sick fascination for an extreme situation, but because we are genuinely interested. You son is interesting, you are interesting, you make each other interesting people to care about, to care for, to be curious of, to expect things from, to be grateful to.

  2. Philip Dzialo commented on a post on Blogger.
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    Pain, yes our kids experience pain, intrusive procedures, twisted bodies, organs functioning much less than optimally, and on. Suffering? They are unconditionally loved, meticulously cared for, hugged and embraced and kissed no matter their age, treated by their caregivers with utmost dignity, and above all kept safe from the harsh cruelty of the world. One suffers from a lack of love and dignity and care,,,our kids are ok in this realm.
    "Is it really worth it?" An outrageously inane comment...it is really worth it because it make our lives and our kids live worthy and living a worthy life is all that matters. Great post....

  3. Too bleary to comment, I'm grateful to simply appreciate what Geneviève wrote about the ways you have been forced, or given the opportunity, to refine skills and perspectives in close relationship with Segev's consciousness. Novel neural nets in uncharted waters.

  4. The same questions have been a plague on my thoughts. I have no answers but work for comfort and peace.