July 16, 2012

The Olympics are coming!

In order to achieve excellence in a level playing field an athlete must be both gifted and train diligently each and every day, sometimes to the point of breaking. Diet must be scrutinized and coaches must use decades of learning and experience to push and motivate, direct and support their athlete. The sacrifices in both personal life and wear and tear on the body is extreme. Very few become "champions" and most withdraw from active competition after only a few years. Physical accomplishments, of the extreme category, are always the realm of the young.

While I am that perhaps hyperactive, over caring coach; always up before the athlete, always carrying his bags, working out of love but not a love of money, Segev my son, is without a doubt that extreme Olympic caliber athlete giving his all for extreme physical achievements that would lay waste to the vast majority of regular folk.

This is not intended as a whimsical metaphor; my son is challenged in severe strenuous physical ways every day. He is an extreme athlete and I challenge anyone to mimic his physicality and level of physical exertion for a 24 hour period, as he lives it each and every day. From the crushing kyphosis impeding breathing, together with the over one hundred seizures a day, including the massive myoclonic-tonic ones where the degree of muscle contraction he maintains can not be achieved by conscious effort, to the ability to scream for several unremitting hours.

Segev's physical achievements should stand as legend. 

For over twenty two years I have been treating patients with mostly techniques of manual therapy. During the course of 22,000 treatments I have been palpating, adjusting and supporting bodies that have typically spent 50, 60 or 70 years developing certain patterns of wear and tear. There is an enormous amount of variation to be seen due to genetics, environment and occasionally diet. Age is of course a major factor and conversely I have been able to view primary patterns of tension establish themselves as early as age one and a half.
But when I treat Segev each day, particularly in relation to the rapid decline I have witnessed in him these last six months, I find a level of devastation on par with that of an 80 year old man, in very bad condition.

Followers of Segev's facebook page are well aware that since mid March he has experienced a period of extreme suffering unprecedented in intensity and duration. In one of many letters written to several physicians I went so far to use the word, "inhuman" to describe the paroxysmal episodes of excruciating pain that afflict Segev.
So many medications were attempted, even when clearly contraindicated to one of his medical conditions, to try to obtain some modicum of relief. Some drugs worked sporadically while others could be repeated only sporadically. One drug could only be prescribed by a pediatric neurologist but all four that I contacted were unavailable for months to come. Several drugs had no effect whatsoever. An application for medical cannabis is still being processed. More tests are planned.

Recently the pains have subsided greatly, having lasted for nearly 15 weeks. While I absolutely rejoice at the fact that the torture has lessened dramatically it is abundantly clear that, since the episodes first made their appearance early in 2004, they will continue and as is always the case when an extreme athlete reaches a plateau, new challenges are brought before him in order to further hone the ability to astound and mystify our perceptions of what may be achieved.
In other words Segev has the very serious challenge of a return to status epilepticus to contend with which, in contrast to all previous times, was treated at home not hospital. Some may recall the repeated, if not blatant, negligence which endangered Segev in previous visits to hospital. We can add to this the fact that Segev has now been on oxygen, up to 6 liters per minute of pure O2, for over 14 days now, 24 hours a day.

It is entirely unclear what is happening, though perhaps better put, what is happening to him is probably a result of a collusion of elements, primary amongst them the accelerated wear and tear visible on his frail little body.

On a personal note, I cannot afford to go out like the legendary trainer, probably a chain-smoker (who actually takes care of themselves in situations like this?), who dies of a heart attack before the big race, fight, track meet, final stretch. Due to increasing health issues I have implemented a strategy of delegating a little bit more of the responsibility, even when it is clear to me that the level of care is not what I believe is necessary, because the simple truth is that I am much less able these days. Not less willing, mind you, just less able.


  1. ((())) to you and Segev both.

  2. Well, my friend, you guys have certainly won a host of gold medals and the collection expands by the day. I have always believed that Segev was the consummate fighter and that dad was the consummate (non-smoking) coach. It is good that you are giving yourself a bit of reprieve, quite well deserved and probably necessary...I am sure that Segev understands and approves. Warmest regards to all..

  3. Pretty raw for both of you. I know the anxiety of caregiver health issues, and the desperate, inverted-from-normal desire to outlive a beloved child. The stresses of war might be a truer metaphor than the Olympic games, unfortunately. Not too many onlookers are celebrating our struggles or worrying about who manufactures our Ralph Lauren uniforms. It's good that you are delegating a bit, though training is always a job in itself. That's a task I need to take on, too, before I have no choice. Breathe.

  4. A thank you for your comment. You are wholly too optimistic though (just kidding). Not that not many are celebrating, people have their backs to us because they are watching the olympics and such. The sad part is when you know it could be different if others were just slightly more in tune, but often family members even find it difficult and caregivers are often fumbling for excuses, "it's not their problem" and such. If not, then why have family?

    War though, (speaking from my experience of Israel) is not a good metaphor because the carnage of war is wholly nihilistic to me.
    Be well all or get thee well...

  5. I take seriously your objection to comparing our struggles to those of soldiers or civilians in the middle of a war, and I was not being cavalier. When I hear accounts of veterans returning with PTSD and other issues, there's often an immediate, pretty blatant resonance with physiological states that have become the norm for many in the world of extreme parenting, unfortunately.

  6. i hadn't thought about the effects after the war where indeed the comparison of physical effects of stress, with extreme parents ex[erience do show similarities. After all, extreme duress carries fairly universal markers. The level of that duress differs though according to culture, which has become clear to me, having lived in several different cultures for extended periods.
    Everyone seems to strive for recognition of their difficulties, but somehow we are supposed to just 'suck it up'. Life goes on, yes, and it falls apart too.