October 24, 2010

Fakir ll

Update: as of this writing Segev is out of danger and feeling quite better. 24-10-10

Fakir 1 is here

In magic timing is everything isn't it?

Many parents of severely disabled children (again, I prefer long winded never-to-be-adopted descriptions such as "extreme multi complex children with disabilities and chronic illness") speak of how great a difference there is in their lives before and after their son/daughter came along. Which is of course stating the obvious but then the sentence usually continues towards how much they have changed, in their perception but also behaviour over time. Self knowledge is a necessity when dealing with the grinding reality of being the primary caregiver for a very very sick and disabled child. Grinding can do two things, I believe, it can either break something into pieces or it can polish it, sharpen it even. A broken piece can be quite sharp as well, hence "I am a broken man". For more on the title of my blog look here in the comment section.

What comes out of this process of breaking/sharpening is that as a person you become exposed, in all aspects, demons and angels, it brings out both the best and the worst in you, each element struggling for dominance.

I cannot say that I am a different person from before Segev came into my life. I can see that my experiences with him have only further honed fundamental beliefs about caring for others, though my skill-set, from the natural wear and tear that such a life brings, has diminished somewhat, become dulled in certain areas. I have been able to hone my cursing skills very nicely, though I am hesitant to demonstrate them to you here.

Driving my daughter to school I noticed once again how people were walking towards work, or the two Hassidic guys, walking much faster than anyone else, as always, in animated conversation, as always. Lots and lots of life force there, I thought to myself, lots of forward motion.

When you are sick you are placed into stand-by position, you are pulled over into the pit stop of your formula one lifestyle.When ill things slow down and seem to take an eternity, you contemplate differences from your pre-sick state and how you usually are, that is if you are healthy enough, being sick, to have the luxury of contemplation. 

Being the father of Segev necessarily raises in me the need for contemplating his condition, as in, the human condition when someone is so completely defenseless as Segev, but not for a limited time, for his entire life.  As said parent I get pulled into a sort of sick-state-of-mind along with my son, on two levels. One is the constant treatment, consideration and work that goes with keeping him alive. My world has been recreated, an almost virtual world if you will, by his being absolutely disabled and chronically ill. This new world of mine I refer to as a hermetic circle because I must carry the burden alone. Even my other two children who occasionally are required to assist me cannot disturb this process of hermitization, it is a necessary evil.  On another level the constant care of Segev wears on me physically.

Reflexes have slowed but some days are better than others. You might think, well that is a natural outcome of aging. I have to remind you of an expression, dear to my heart, that everyone knows about, even if they don't truly know it; "it's not the years, it's the mileage".  Some companies have a clause when you are sent to work abroad in difficult situations that is referred to as "tropical years". They acknowledge that someone coming from, for example, northern Europe, and then goes to work in Indonesia, is going to have both physically and mentally a tougher time than if they stayed in their native country where they are adapted to the climate and way of life. Tropical years count for double and so such a person can retire early on full pension.

Do other parents dream of retirement? Because it does not appeal to me in the least. I am most happy when busy, especially in my profession which allows for me to help others, believing, as written here it's what I am meant to do. The continuity therefore, of before and with Segev has not been disturbed.  What has kept me going unfaltering in my resolve  is what I want to share here.

After his birth I had an overwhelming intimation that something was wrong with Segev's brain. So much so in fact that at one point I was nearly overcome with the paradoxical feeling that Segev was fine and I shouldn't do anything at all, not even take him to the hospital. That is how strangely yet powerfully intuition can operate.

The doctors said, "he is a late bloomer". The ultrasound was read as "probably normal", the CT scan was "probably just a naturally occurring variation", in the first MRI there was no mention of migration defect, hypoplasia or any problem with the cerebellum. So according to high level medical science Segev was actually 100% normal.
Flash forward to the second MRI report almost a year later which recorded a lack of two of the three cerebellar arteries as possible explanation for Segev missing two thirds of his cerebellum. So I thought up  the idea of doing a Doppler perfusion scan of those arteries and it showed that he has all three with full blood flow.

Clearly one factor influencing my resolve is intuition; I listen to it. The other being educated thinking. This may seem something of a non-event to some, who feel very connected to their intuition, but I like to see myself as a thinker; give me enough time and I will find a solution, which kind of contradicts intuition.
So despite a tremendous curiosity and desire for learning, like my father and grandfather before me, in the end I can say that for the most part my intuition has allowed not only Segev, but other patients as well, to prevail.

One of the adversaries, I believe, for parents rearing children is giving children too many choices. It may weaken their resolve and cause confusion. So to simplify choices I don't ask questions. This may seem to contradict the above statement of voracious curiosity. What helps here is if you consider that it's all about which questions I don't ask. In a completely natural fashion, as an outcome of who I am I simply cannot ask "why did this happen to me?"  Or, "why did this happen to Segev?" 

I honestly don't think there is any relevance to this question, whatsoever. So many seem to make this a central issue in their lives as parents of severely disabled children and suffer tremendous anguish because of it. 

It doesn't bother me that Segev is the way he is no more than I could be bothered by a tree being a tree. Is taking care of Segev crushing the very life out of me? Sometimes I certainly feel that way, but I am just being true to my nature in taking care of him and being true to my belief that as a father I carry a responsibility.

Don't take this to mean that I don't find myself in metaphysical discussion, I have religion, I do. It is my faith in life that helps me carry onward. I trust that life does what it needs to do. I know that in the journey of trying to help, to come to this understanding, that we are most exalted; when we create something together, selflessly. This is a pool of strength that strives to create and even as individuals our intentions bring us together energetically. As a contrast stands everything what we do not want to be, negativity, so that we can understand who we are. And this journey of creating a kind of living for a child naturally attracts a great deal of negativity. Still it exists as a mirror to look into; I have a saying, "good without bad is blindness". Without the bad we can't see the good, can we?

I was with Segev in the mall one day and a girl of about nine came towards us and stood close to Segev. She looked at him for a moment and then at me and very calmly stated, "He doesn't know how to speak."  Filled with pride for this little girl I replied, "no he doesn't". "He can't walk either can he?"  I answered her and searched her face for something I could recognize, some special emotion. She was about to say something else but then her mother sprang in and grabbed the girl by her wrist, pulling her away muttering.
What an intelligence in that little girl! Possibly the most intelligent response to Segev I have ever witnessed. When her mother came along I thought, "such ignorance", here was finally someone who could see without preconceptions, straight to the heart of the matter. The girl disappeared in the crowd and I could not help but feel a sense of loss. It was one of the last times I was able to take Segev out to a public place.

I have seen many moments of truly special connection in life, when something happens that defies our understanding. Some are opposed to calling it magic simply because, since it is not usually reproducible it is "blind luck", "an incredible coincidence" or your mind playing tricks on you or proof of God's work. Certainly not something which was controlled by one person in order to achieve an affect, recognizable beforehand.

Most of the time this is true. It is also true that a broken clock will give you the correct time twice a day, you just need to know when. But that is a rather poor example since the trick is not to point to the sky exactly as some unidentified object passes overhead and shout "UFO" but rather to know that something will happen at that moment, even if you don't know what.

We all have had the experience where you are standing in traffic, offset and behind someone else, looking at the back of their head and that person turning around to look directly at you, not looking around to see who of all the people around might be staring at them, no, they look directly at you. This is an easily reproducible effect.

We have senses that need to be used to their fullest and I believe nowhere more so than when trying to help our children. But intuition can be a slippery slope and from twenty years of treating patients I know you need many faculties working together to come out with a useful application of intent.

At the beginning of my career as a specialist in Shiatsu therapy I saw a slew of cases that hadn't found relief despite having gone through any number of treatments. Often it was because the person themselves needed to see their problem in a different light, not just that the proper techniques of physical manipulation had not been applied. The following case illustrates that quite well.

I treated a couple for some time whom had a daughter of fourteen that had been lying in bed paralyzed for over a year. One day the mother asked if I would see their daughter and I readily agreed. Specialists had been unable to find anything wrong with her. Her room was dark and I literally felt a sense of foreboding as I entered. Sitting next to her on the bed I explained to her what it was I was going to do, which amounted to palpation of her abdomen. Her voice was less than a wisp and I could barely make out if she was saying something at all. I was so afraid that anything I might do would cause her harm that I had to ask myself 'what is it really that you think is going on here?'

Fifteen minutes passed and I explained to her how this pressing on her abdomen could increase circulation and decrease tension. Finally I mentioned that if she were able to mimic this pressing a few times a day herself she might be able to feel a bit better.

I waited for her to respond but there was only silence. Five minutes went by so that I thought she had fallen asleep. Finally she did speak and said, "you really think that I can help myself ?" "Yes, I do" I answered. Now I absolutely believed two things; one was that I had no idea why she was in such a state, mentally or physically but that her abdomen definitely did not show any pathology that my training would let me see. Two; there was no harm in trying to encourage the girl to become more active while laying there in bed. In doing this I was not prescribing a treatment for whatever it was she had.

The parents broke all contact with me after that visit. Much later I would find out that the next morning the girl had gotten up out of her bed and wandered over to a school friend (in the middle of Canadian winter) who she hadn't seen for many months, dressed in her pajamas. She returned home that evening, walking, to find several police cars outside of the house.

This is a case where timing produced magic. The right thing at the right moment. Unfortunately, just as the case of the paralyzed girl was unexpected, the outcome even more so, Segev's care will remain a mystery as he concocts strange new challenges, secretly, challenging me in an absolute way. Perhaps that's why I call it magic though, because to me in magic there is always a moment of uncertainty, of doubt whether the momentum will swing towards pulling it off or whether luck will not have it. Luck is certainly something I could use a bit of.


  1. Thank you for sharing your journey and Segev.

    I was wondering if you know about Shalva, a facility outside of Washington DC was inspired by Shalva in Israel. http://www.shalva.org/

  2. I know of the one in Jerusalem. There are few places here, meaning long waiting lists. A good place is certainly a godsend, but exceedingly rare when you look at the complicated needs of extremely disabled and chronically ill kids. Good luck with it and thanks for reading the long post!