December 08, 2010

Missing: everything

photograph by candymax

Despite its length this writing doesn't live up to what I had hoped to achieve but given my time constraints, it will have to do for now. 


When you exaggerate people will miss the levity you are trying to convey. But there is one thing I certainly know to be fact after nearly thirteen years of fighting to keep Segev alive: you cannot understand how great the emptiness is, the magnitude and complexity of what was taken and how apparently, to the untrained eye, Segev has nothing yet that nothing obliterates that void.

Sounds like a rather emotional statement to me, perhaps bordering on the bellicose. So let's run through it together shall we? And this is done, not to garner sympathy, not for me or for Segev (the donate button is at the top right of the page) but to gain understanding. Why do we need to understand better how significantly challenged Segev is?

Because there are discussions going out there about rights of disabled children; human rights, rights to benefits, rights to live, even rights to die, and decisions are being made about what is right and what is wrong for children like Segev and less severe cases and we may find ourselves in a position to discuss or even influence opinions so naturally we must be "informed".
And because either Segev has a right to life with dignity or he doesn't. If he does then we have to understand the depth of his problems. Remember no one is asking to fix what can't be fixed, but the truth is that when we save a little bird from imminent death we will protect it, nurture it until it is capable of taking care of itself, while there are those that might euthanize the bird if it can't be made independent.  Of course people like Latimer choose to euthanize their child, while also refusing treatment that could help make the child more independent (all within context of that child's disabilities) and indeed taking care of Segev is quite a bit more demanding than taking care of an injured little bird that has lost it's way.

Again I stress, whatever your reaction may be to a "Latimer", mine is to fight for Segev until I see that he no longer wants to or can and I have been at that precipice so many times, having to decide if to intervene and help Segev to stay with us that surely this puts to shame those same Dutch doctors who euthanize babies with pride because they are certain that nothing good can come of that child's life.  In my opinion parents who are either influenced into such a decision or take it with the thought of the inconvenience a life with a severely disabled child will bring, are like hit and run drivers who, driving at night strike something, see the flash of limbs flailing in the rearview mirror and continue driving "hoping" it's not what they think it is.

This thinking and feeling of mine is a kind of "it was meant to be" philosophy, without the need of religous overtones to assuage confusion as to why this happened. Either life has meaning or it doesn't. When deciding life and death it is black and white by definition.

If life has meaning then to take it must be an act of self preservation. I think some people might want to look at Segev as a human being and reevaluate how they define self preservation.  And so that you know, of all the times that I had to decide to fight to preserve Segev's life, sometimes literally beating the life back into him with cardio-pulmonary resuscitation, there was a time when I held Segev, his breathing having slowed, stertorous, unconscious yet seizing, a long hard dark time when my strength was ebbing. My resolve to do everything and anything did not waiver but the decision whether to call ambulance and rush him to the hospital needed to be made. I knew that his situation was so grave that either he was going to make it on his own now or die on the way to the hospital and I decided would prefer he die in my arms. But he did make it. He clung to life, some will say by chance, certainly chance will play its part in life and in death. But that one time that I did let Segev's being decide, the balance of the scales tipped toward life. You have been measured, you have been weighed and you have been found.

The most important issue here for me is that I am constantly searching for certainty that I am treating Segev with dignity. That I am not encroaching on him my wishes and that this is making him suffer. His suffering is massive, there is no doubt. How much of that suffering does he comprehend? This is a central consideration in all the issues of discussion I listed above. Normally we resolve this through communication

How is that working out for you

Segev doesn't blink but he will lower and raise his eyelid occasionally as a response to a question. As regular readers will know for years Segev smacked his lips together when he was asked if he was hungry (and indeed enough time had elapsed since his last meal) but stopped a few years after he no longer received food through his mouth.  Because he reacts often enough to the question of being hungry in a specific manner and never responds to another question in that fashion I know that he understands it.

If I ask him if he wants a bath, he will blink, assuming of course that his level of consciousness is dialed up to ten instead of the usual 2-5. At setting ten he makes noises, tells stories and may even stiffen his arms for up to twenty seconds out of excitement. At setting ten he smiles almost every time you touch him, move him, talk to him.

Often he rapidly sinks into what appears to be a number two setting but if you do speak to him and hold his hand his eyes will rocket open and his body will curve, often into a twisted morning-like stretch, and this electrical reaction is nothing short of uplifting each and every time.

When Segev is "dialed in" a session of strategic scratching, of his arms or knees and especially back, is met with delight. He can be slumped, with a sour expression, no longer reacting happily to touch or talk but then I have taken him in my arms and using the sum of twenty years of intuitively applying manual techniques to people's bodies, manipulate Segev's back and ribs in a convoluted, circus-attrraction-like position and that glum, pained expression has been replaced by light.

Why is this relevant, besides the joy of sharing experiences of Segev with you all?  It's relevant because I have been treating disabled adults and children for a long time and with Segev being my son, closely scrutinized, weighed and measured, I have come to the conclusion that there are many times when there is the appearance of no communication or understanding, the actual presence of a physical state where there is no communication, but that may respond to the right stimulus and interpretation.

Therefore in all discussions of method and treatment, both in rehabilitative terms and in defining cognizance, there is still room for searching and learning, exploring. Bio-ethics is necessarily as embryonic as bio-technology and the discussion of euthanasia or growth attenuation is not done. 

Some will say, "what a moot point, he is already here to stay, let's move on." Just because Segev got his ticket stamped for this ride doesn't mean others will be as lucky. He is here to stay and moving right along means looking at what his needs are so that he can continue to live out his life with as much dignity as you can fit into a well-observed, well-considered, properly mitigated, true-to-life lowering and raising of an eye lid.



2 comments:

  1. Yes, very well written and it does convey your meaning and the depth of love and connection on a profoundly unique level with Segev. Your words resonnate with me and with the oneness I feel with my son...warmest regards!

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  2. I have been reading all your posts, Eric, yet have refrained from commenting mostly out of overwhelm. Today...this: "In my opinion parents who are either influenced into such a decision or take it with the thought of the inconvenience a life with a severely disabled child will bring, are like hit and run drivers who, driving at night strike something, see the flash of limbs flailing in the rearview mirror and continue driving "hoping" it's not what they think it is." Astute. Perfect. Then this: "This thinking and feeling of mine is a kind of "it was meant to be" philosophy, without the need of religious overtones to assuage confusion as to why this happened. **Either life has meaning or it doesn't**. When deciding life and death it is black and white by definition." Would that more understood...or chose to see meaning. Lastly: "Therefore in all discussions of method and treatment, both in rehabilitative terms and in defining cognizance, there is still room for searching and learning, exploring. Bio-ethics is necessarily as embryonic as bio-technology and the discussion of euthanasia or growth attenuation is not done." Oddly, though, bio-ethics is evolving into a field of apologetics for the most vile aspects of the medical model.

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