August 01, 2017

From ordered chaos to chaos to...?

You know you have reached a specific, critical moment in life when you tell your child, "It won't be long now."  You choke back tears, you don't want to say it, the only other thing you can say is, " I love you."  Perhaps that's better. Both are rather redundant. If my son couldn't understand the exact words, he knew my intention; to prepare us both, ever so inadequately, for what was soon to come. Inside, I railed against this phrase of demise, it felt like giving up.  
The strange thing is that I knew I wouldn't be angry with his passing. It wasn't a decision on my part, not to allow myself to be made angry; there simply was no place for anger. And so it was. What I could not have known at the time was the immensity of the tidal wave of limbo that would hit me. It was impossible to make me angry. Nothing upset me anymore. Together with this there was a swift yet barely noticed undertow that obliterated my self-confidence. If I'm not taking care of my son anymore, what am I?

There was no confusion per se, there was certainly no self-pity, it was just that all the colors simply faded away, the sound of people speaking, or cars in traffic was merely some quaint background noise. Very little mattered, although I distinctly remember worrying about Segev's brother and sister. My journey with my son was something quite different from theirs and try though I might, I could not, for the life of me, figure out what they needed, what they might be feeling. I slept a lot. So many years of sleep deprivation had damaged my memory and I found that new memories were fleeting at best, nothing seemed to stick. 

The muscles in my body suddenly relaxed and nothing disturbed my sleep. There were no sudden starts in the middle of the night: where before I was so finely tuned that any, any change in my son's breathing instantly saw me jump up and stand over his bed, tucked tightly against mine, acting instinctively to clear his chest, open his airway or restart his breathing. An electric clock had to be removed from the bedroom because I would awake to the sound of someone hammering on the walls, only to realize it was the whispering zoom of the electric clock. I no longer felt my heart jump into my throat every time the phone rang. My thoughts slowed down and not once did I think, I need to check on Segev. 
There were valid reasons to be angry, not for the fact that my son was gone, but situations and individuals that had made mistakes, increasing or prolonging his suffering, damaging his health. Resentment doesn't usually disappear into thin air; the conception that, since he was now gone it no longer mattered, is not how my brain works. But there it was, a complete absence of any anger, that, you might be surprised to find out, I worked to slowly reclaim over the last four months. Properly directed anger is a motivating force that increases your ability to focus and it is the extraordinary focus which I was able to sustain for nineteen years, that I most desperately sought. 

I need that focus to finish my novel. To finish a book on Shiatsu. A book on life with Segev and a memoir. Yes, I have no shortage of plans, to continue doing what I did even while caring full time for my son, albeit in stuttering fashion, such as publishing the collected works of poetry.  For some years now my greatest ambition has been to try to assist in the care of other catastrophically disabled children.  I have both the unique abilities and experience to do so. I've stayed in touch with many, reaching out while some have faded into oblivion.
Unfortunately one month ago I again had a fainting episode, most likely brought on by another bout of pancreatitis and fell to the ground in a very awkward position, with my head twisted to the side. When I regained consciousness I was unable to move even my hands and for a few brief moments I thought I had broken my neck and was paralyzed.  The recovery is still very much "ongoing". Once again I could not work, this time for only three weeks, in contrast to December through March when my son's deteriorating condition made it impossible. Financial issues continue to mount: My son's grave is still without a headstone, in part because I simply don't have the means to pay for it. 

I underwent a CT scan of my neck and recently received the results: I have six bulging discs, a straightened cervical spine and five vertebrae, where the passageway of the spinal nerve is severely narrowed, compressing those nerves.
This couldn't have all happened over night. As a matter of fact I've been battling chronic neck pain for close to thirty years, having had it dismissed by two previous orthopedic surgeons since I was either "too young to have a real condition" or, "There's nothing that can be done about it."
Fortunately I've met with a decent surgeon who has come up with a diagnosis ( the rather generic Spondylo-arthropathy) and drafted recommendations I see a neurologist, a physical therapist, a rheumatologist and a spinal surgeon. My appointment for a consult with the spinal surgeon is set for January next year, so I may have to go privately to see him sooner. Right now it is speculative as to what procedures might be recommended, how much they can help and whether I'll agree to do it.  In the meantime I have returned to giving treatments to people to help manage their pain ( yes, the irony) which is proving to be very taxing, to say the least.

It's funny how things work out in life: not the way you hope, not the way you want, but apparently the way it has to be.


  1. This piece speaks so much to me, from the startles in the middle of the night to the who am I now? You are so gifted at writing. Wishing you well with your surgery.

  2. Your description of absence, of not knowing what to be, is so striking. I cannot imagine the levels of complexity that surround everything you and your family have experienced, especially in the last year. I don't have anything meaningful to say, I don't know how to fill the space and I'm sorry. I am sorry.