Forty four years ago I decided I would become a writer, because I wanted somehow to bring about resolution to conflicts that I witnessed people experiencing in their lives. That was my second choice, actually, my first was to become God, but I quickly realized that if I could think of that at age six (I wasn’t terribly concerned with actually how I would become God) then adults, infinitely smarter than myself and higher up on the pecking order, could do so and would be given preference.
But stories could be manipulated, changed, and so I vaguely envisioned rewriting people’s lives and conflicts and that they would then be able to see that things could be done differently and the outcome would be a more positive one.
I wrote all the time, nearly every day, or simply made up stories and told them to people, sometimes placing myself in the narrative. These stories are not to be confused with ‘lies’, ‘fibs’, ‘fantastical concoctions’ or ‘wild tales’, though I was not infrequently admonished that this is exactly what they were and that I should, ‘stop living in a fantasy world’. I was not deterred, my intentions were pure.
In adulthood, I discovered a connection to certain aspects of people’s narratives by being able to intuitively say the right thing to a person at the right time. These rare encounters were to have a crucial influence on peoples lives, in essence allowing them insight which led them to an alternate future. That realization came roughly at the same time that I decided to (temporarily) abandon writing, a decision that held sway for over fifteen years.
The very first thing I wrote after this period was a poem memorializing my mother-in-law, of whom I was very fond and successfully helped treat for pain and discomfort after she was diagnosed with renal cell carcinoma. Years previously, waking one morning with an epiphany, I chose the profession of physical therapist and based my practice exclusively on visiting patients in-home. I seemed to gravitate naturally towards treatments and strategies of pain management. This calling is now ongoing for more than 26 years.
In 1998 a force majeure entered my life when my son Segev was born with a life-limiting condition and extreme disabilities that made him wholly dependent on round the clock care by his loved ones. For eighteen years we have struggled mightily to allow him the opportunity to live, to allow the meaning he brings to our existence to unfold. Countless times he has been close to death, pulled back from the brink; either by the brazen sheer strength that his tiny paraplegic body somehow magically contains, or by the will and determination of his family to find solutions that give both longevity and quality of life.
In the last few weeks Segev’s weakened, poorly functioning body, was struck down by a viral pneumonia that brought him to within hours of death. But he made a partial recovery that has allowed him to hobble along with a small portion of his lungs still functioning. Unfortunately a neurological downturn began developing concurrently, exacerbating the horrendous seizures which have plagued him daily since birth. For nearly a week now my son has been in a medically induced coma (not unlike the natural comas he has faded into too often) and the situation doesn’t look good.
But, I don’t have a plan. I never do. Remember that thing where you say the right thing at the right time? Intuition? It hasn’t failed me yet, but that doesn’t mean it always appears when you want it to. It just doesn’t seem to work that way. And it took me decades, decades, to interpret the things I was seeing or feeling, so that I could make decisions with confidence. After 18 years of caring for my son, a toll has been exacted, a levy imposed on my mind and body which has shaken that confidence. Depression, singularly the result of continued exhaustion from chronic sleep deprivation, acts to further dip one in the murkiness of doubt.
The one thing that now preoccupies us, on an hourly basis, is what is best for my son. What would he want, is an impossible question since he has never been able to express anything but either joy or discomfort. So we have to find an answer within the confines of those experiences. For myself I have always known that if his smile disappears, I will not be able to maintain that grinding pertinacity that seeks goals, if all that it will lead to is oblivion. The only goal which remains is to do our best to make him comfortable, that is obvious, if no easy task, not in the least because we are beyond tired both mentally and physically, stressed to breaking point. Financial pressure mounts as I am unable to work.
The thing that isn’t so obvious though is that during the course of the discussions of late with his mother and siblings how questions of our own ‘comfort’ perniciously creeps into that equation. Not actual comfort, much more what and how much can we do that still bears resemblance to a path of dignity for our beloved Segev.
I wanted to say, ‘as I have been unable to work, since doing so would compromise my son’s chance at a momentary reprieve, a few moments from which to squeeze a last bit of joy from an exquisite life’. But there you have it. Dying isn’t pretty folks, especially where kids are concerned and after eighteen years of this business, I find myself unprepared. I don’t want it to end, which has served us well, bringing us this far along, but that is now a hindrance. Because after all, what a parent wants in this situation is to see with clarity; not only what to do, what to think, what to feel but to come to terms with the fact that somehow, somewhere, this is OK. That to ‘rage, rage against the dying of the light’, can be replaced with the knowledge that all journeys end, but that that doesn’t diminish one iota from the experiences that have enriched us. Bathing our very being in a sweetness and purity which are immortal.