unedited/unplugged

Before my son Segev was born, in the morning I would take his brother and sister to kindergarten and then go to work, performing housecalls. In the afternoon I would return and pick them up, eat lunch with them and after a few hours together go back to work, regularly returning home at eleven O'clock at night. I worked six days a week but friday was a short day, then I would finish at seven. Still, my fees were extremely low because I was interested in gaining as much experience as was possible and never said no to a case, no matter how difficult. Naturally I struggled to make ends meet and provide for my family.

Before that, living in Canada I was enrolled in the full time study of Shiatsu therapy, simultaneously in the part time study of traditional Chinese medicine, took masters classes twice a week in the evening and two nights a week (sometimes three) after finishing up the day of study with treatments in the student clinic at 4:30 I would head off to hospital to work until 11pm and return home by eleven thirty or midnight. The next morning at 9:00 I would be back in class.

This is the work ethic that I brought to raising my son Segev. It is strange for me to consider the caregiving, the study, the treatments and hospitalizations, the searching for understanding that which he represents, as 'raising my son'. It's an awkward endeavor that has given my sense of purpose in this life a sharp focus.

I have made many mistakes and continue to do so. One of the most dangerous nights in Segev's life was during his lengthy hospitalization at the start of 2011. That night when no manner of oxygen supplementation was helping and his breathing so labored I feared the end could be only minutes away.

Recently, Segev's decline in lung function, in part because of his paralyzed diaphragm, has accelerated and the last two weeks he was extremely ill. So ill that I contemplated bringing him to hospital again after all the poor experiences with a health system that is not geared to recognize nor treat his chronic condition. He is getting better over the last two days because I learned from that experience in 2011; now I understand better the mechanism of his blockages and his partial lung collapse. Most techniques are the same,some new, but applied somewhat differently and for longer periods of time. As was the case now, often throughout the night, I have had to apply chest compressions and a variety of other techniques discussed in previous posts, for up to five hours continuously.

Exhaustion has overtaken me on a number of occasions. At the Christmas dinner with my children I had to simply stop treating Segev, leaving him listless on the couch in a somewhat stable condition, to be able to sit down and eat.

These are not happy times. The good of these efforts speak for themselves though, at least in my mind, while others, his mother included, ask how much benefit is this bringing in lieu of how much he suffers. Is this a losing battle?

That depends entirely on how you look at it. I am "challenged" by his condition but am now resigned to work at alleviating his discomfort, rather than trying to build him up or even slow down the decline. He is tumbling down the hill and there is no way I can stop it. There was never meant to be a way. But there is a way in which to do it that doesn't require this maniacal devotion and over exertion. Support from the medical community is slowly materializing, after nearly fifteen years. Social support, woefully inadequate, is making some squeaking noises in the corner, after fifteen years. They give me candy and take away my steak.

Putting him in hospital, probably the step that will be taken next time he is this ill, gives him a fifty percent chance of negligence killing him. That is one helluva bombastic statement, I know. Hopefully I will be able to expand on that at a later time, in order to examine the truth of it, and slowly expound ways in which the health system, with no added effort, can rectify this.

My son is caught between a rock and a hard place and I wonder if I should shed tears for him as I try to rejoice in his indomitable spirit. Because make no mistake, 'the spirit is willing, but the flesh is weak' finds no better home than here in the hermetic circle of care. For my son it is 'too late', for me I hope that there is no losing heart, there is merely temporary fatigue. Encouragement comes from far away and I am thankful that through Segev, I have learned to accept it because hardness is not strength. Suppleness is not strength, but the combination of the two creates an understanding of how things should be.