My son is having a rough time of it, again. But there are moments when serenity spreads her wings; his face is relaxed, a small but potent smile comes on and his eyes sparkle like a kid seeing Disneyworld for the first time. I find, for lack of a better word, a sense of grace in these moments of reprieve from his increasingly frequent discomfort. They are even as predictable as they are significant because finally there is something concrete and positive that comes by way of my own hands as I work to massage his back in preparation, then work harder still but with delicate precision, to decompress his spine and see him relax completely.
Though Segev's treatments takes me to my limits and beyond, it is the experience of nearly twenty five years of giving treatments, numbering in the tens of thousands, that have helped prepare me for this task, of adapting postures and techniques that fit my son’s unique needs. I feel my way through the tortuous landscape of his misshapen spine, the contortion pressing on nerves to such an extent that even food traveling through a particular section of his bowels presses on the displaced nerves and causes him to scream in agony. Despite several pain medications, multiple times a day, these paroxysms of pain have never been fully controlled and have gone from being a rarity of occasional clusters at non-decipherable intervals to frequent, daily episodes.
At the same time the health of his lungs remains a tremendous concern with pneumonia always a stone’s throw away. Multiple daily sessions of chest physiotherapy, nebulizer use and the spinal decompression have helped to keep him in reasonable shape since we came out of the four and a half month long bout of pneumonia at the end of April, this year. His last episode was three weeks ago and in contrast to the previous twelve years of lung infections, the degree to which he was conscious was much improved. It’s hard to understand that part; why he can be completely unconscious for up to eight days at a time, completely limp and unresponsive to any stimulus.
I like to think that he has survived these dozens of cases through the combination of tending to him in unrelenting fashion, administering through the days of night and the nights of day, attention to detail, Love and his own inborn, remarkable strength. But I don’t know to what degree luck hasn’t played a significant role as well; whether mistakes made in the past can be considered cancelled out, by propitious, timely decisions.
Remarkably his oxygen levels have improved over the last two months. While he still requires supplementation twenty four hours a day, the numbers are quite good. Then the caveat: whenever he does sleep for more than two hours there is about a twenty percent occurrence of his left lung closing completely, (though it is collapsed it still allows for some incoming and outgoing air) it requires vigorous chest compressions, ventilation with an ambo-bag and no small amount of panic as his oxygen dips to 60% or even lower. The times when he sleeps and the monitor’s alarm starts its horrid noise, flashing red as it shows a rapid descent in oxygen saturation and Segev calmly remains ‘sleeping’, breathing less and less as the central apnea takes hold, until thumping on his chest gets him breathing again, are unlike the issue of complete closure of his left lung. That is accompanied by severe thrashing and heaving, as he fights for breath, tries to cry out in pain but is nearly mute throughout the contortions.
Few of Segev’s four or five different seizure types hold to any kind of pattern. Since starting the medical cannabis and its derivative CBD, he has moments where he tracks objects with his eyes, is more lively, disturbed by switching on a light to the point where it initiates a seizure, also developing a startle reflex to very particular sounds yet in general having far fewer seizures each day. He has gone from up to a hundred down to about thirty per twenty four hours. The external manifestation of the seizures has changed dramatically. The severity of some is different, there are new types of movement. Some attacks go on for less time than before, some longer, some now repeating in clusters that will only end with the administration of diazepam (valium). And so it was now, just now as I was writing this piece, barely five minutes ago.
To continue; why now? I mean, why write about it now, yet another time? Yes, new elements come and go, old patterns from years past reestablish themselves so that, in one form or another we have seen it all, gone through every minute detail, lived it, clenched fists, wailing, raging, whimpering; all done before. But still surprised; by his tenacity, withered by the endlessness of it, delighted, by the endlessness of it.
Because not only have I grown weaker, (though, I believe, wiser) but so has he. The changes to his veins, darker and more prominent, bodes ill. While his sleep is constantly interrupted by either seizures, or the need to expel the ever-present phlegm, repositioning his paralytic body or the tense moments of pain, he is only conscious for a few minutes here and there. Together the time that he is awake amounts to no more than a few hours. It’s good that he rests so much, I’m certain that with all he goes through, he needs it. But that is the point, he needs it. He can only muster so much and with time, he is present less.
I’ve had to take a long hard look in the mirror. The kind of stare down where you put yourself in a tough place, where tough decisions are made. I don’t want to make those tough decisions again, don’t want to think about them but I would be deluding myself if I thought otherwise than that the most difficult experiences still lie before us. Things will be different. Hopefully my views will have evolved to allow me a better perspective and Segev will evolve as well, into a different Segev, moving through the stages as only he can.
Despite the morose state of things (or of my mind) each and every day is appreciated. Each day I remind myself that it could be worse. I truly believe that. When I am able to nap for an hour or two while my son is with his mother, I feel like a different person, clear headed (well sort of), with energy to spare (at least for a bit) and then the feeling of reward for having Segev is that much stronger and tangible. My kingdom for some sleep, I sometimes whimper. Just let me sleep a bit. Driven mad by lack of sleep; not a pretty picture at all.