In a life such as that which my son, Segev, leads, it is often the silence which is the most telling. When seizures happen, which have once again become pressing, you see the issue right in front of you. Maybe there is something you can do, increase the oxygen, suction, support his flailing arms (even though they are tied into elastic bandages to minimize the damage), wipe away the tears. Then comes the quiet. How well will he recover? Is the next one on the way? Or more pertinent, what caused it this time; a build up of neurological tension from frequent, excessive pain? A blockage in his lung? Do I reposition him in his chair or move him to the couch where he can lie more prone?
What is cooking while he seems calm? Because all of his problems, everything, is always on a simmer. Relentless. Then the silence is broken again, pain from his hip (his leg moved less than an inch) sends him into howling pain. During each bowel movement, screams, as the contents move through his intestines and presses on nerves in his spine, compromised by severe deterioration there.
The silence in between is not a hopeful one. He rests, and I am so happy that he rests, even though it is either from exhaustion or the cannabis, pain meds or valium. But then he is violently pulled out of slumber by pain or seizure. Time to vent his stomach, at least every thirty minutes, because the oxygen which helps keep him alive is also pumped into his stomach and brings on screaming.
Now we're on board, the palliative train. A new team, headed by a concerned doctor. He listens carefully and is helpful. Is this the express train, or are there many stops still ahead? Fentanyl, a very powerful opiate is introduced into the conversation, but there are no pauses, no quiet reflection. No need to absorb the information, think through the consequences of side effects, weaning. Just information that will be put to use when the decision is made that there are simply too many painful episodes in a day. It's information that in the past made my heart jump, but not anymore. Now it is a bit of a relief; the thought that when it does come to that point when we think it simply is too much, there will be something to do.
The treatments to lessen his discomfort, the pressing, manipulating of his back, massaging, still helps and continues unabated. By my hands, but also his brother, his sister and of course his mother. Many many times throughout the day, the evening, the night. The physiotherapy at three O'clock in the morning to get his lungs open, continues. The crises come in waves.
Every thing goes on as before, except for my thinking, that things will continue to go on as before.
The quiet in between is no longer my friend, the silence is a lie.