August 05, 2013
August 01, 2013
I was caught sleeping but fortunately there were no ill effects. On Sunday I took Segev for an x-ray of his pelvis and right hip. Friday he began screaming from pain whenever his right leg was moved or I held him on my lap. Both his left and right hip are dislocated. Since he sits in his wheelchair with a very strong decline as well as tilt, due to his massive kyphosis, there is normally very little weight on his pelvic region and even less when he lies on the couch, supported by a myriad of pillows. We saw a similar situation with his left hip about a year ago when any rotation or movement caused him pain, but this time was different due to the intensity of the screams. One time pulling the straightened leg away from the socket provided relief but the next time it did just the opposite. Any rotation was immediately met with screams. His sacro-iliac region was also hyper sensitive and caused him to cry. Giving him his shower, where he finds blissful relief from pain as I work for twenty minutes massaging along his intense scoliosis, went well until I tried to lift him from his bath chair. Finding two vertebrae out of place in his lower back I nudged them back which seemed to reduce some of the sensitivity over his sacrum.
I went ahead to scout the new x-ray clinic and after I mentioned his condition the assistant was helpful in procuring preferential treatment. I was worried about the technician though, as is often the case, since positioning Segev on the hard metal table is always difficult. I had brought several extra cushions, or rather his wheelchair cushions were available if the need were to arise. Which it did, the technician responding that he only had the one, thin head pillow, take it or leave it.
What took me by surprise is that after placing Segev on the table, telling him all the while what was going on, the technician did not take any cue from my behavior, or Segev’s appearance for that matter and began pressing into his abdomen to ascertain the position of his pelvis. Luckily Segev neither jumped nor began seizing but I did blurt out a, “watch it” to the man. After the first film was taken and he was moving gently and smoothly to place a new film under the table he placed his hands on Segev’s hip and readjusted him. “Don’t…” I managed to say, but he paid me no heed and it was certainly the smooth gentle motion, and indeed the gentleness of his adjustment which caught me off guard. Segev didn’t react but this was an exception. Lucky us, I thought. But also it was obvious that, while gentle, this man would not have me “telling” him what to do. You sense these kinds of things, don’t you?
The fact that he never addressed Segev, especially to give some advance notice to him that for the third film he would rotate his leg outward, had me sweating like a mule. “Tell me what position you want him in and I’ll put him like that” I repeated for the second time in the session. He gently took Segev’s leg as we stood less than a centimeter apart, again ignoring me and I felt I had a decision to make. You know the one, whether to make a scene and probably have the technician state that he wouldn’t proceed further as I didn’t need to tell him his job. He couldn't know the nature of the child he was dealing with and so I assumed he would suffer a natural trepidation, at the very least communicating to me his needs for the procedure, as I was clearly stating ours, as mentioned. One thing I knew, if Segev were to begin screaming, that police would be called. I’m not certain if he would be doing the calling or me, but there you have it. Overreacting? Most likely. As it was Segev did not scream from pain and all went well, other than that the x-ray turned out to be of very poor quality.
Since then Segev's problem has quieted down considerably, although I have seen him jump a few times when testing the leg, and it is quite loose now, more than ever, kind of floating, merely attached by ligaments perhaps made extra lax by the years of ciprofloxacin he received. (Just as he is presently receiving, recovering from his second pneumonia since the start of the year). The results show a flattening of the femoral head (reminiscent of Trichorhinophalangeal syndrome) but it is difficult to judge depth on such a poor x-ray and so it is unknown if this is getting stuck somewhere on the outer ridges of the acetabulum and causing pain. He continues to improve.
I ran into the mother of a young man here in the village. Eleven years ago she made a left turn, on a green light, at a major intersection and the truck driver coming from the opposite direction plowed into them. Her sixteen year old daughter was killed instantly, her one year old suffered a concussion and her eight year old son had his neck broken. Since then they have gone through hell and back. Occasionally I see him with his nurse, motoring along in his electric wheelchair, his ventilator keeping him alive. She was saying how finally they had successfully lobbied for him to do a year’s national volunteer service, just as my daughter is doing (she moves to the dead sea this Sunday to learn nature conservation) in some capacity. He had suffered a depression and was hospitalized with anorexia because his request was initially denied. “How important it is to allow him to find ways to express himself”, I offered. The response seemed to rasp a bit on my ears.
“You have to give him something to do, keep him busy”, the mother said. I thought for a moment and said, “yes that is true of all of us isn’t it?”, thinking that idleness is disheartening and difficult for us all.
She barely looked at me and said slowly and tight lipped, “it’s a little bit different when you are in a wheelchair.” I thought to myself, ‘ she doesn’t seem to remember me from all our conversations, remember who Segev is’. But of course I knew that she was ‘in her moment’, happy for her son, yet weary as perhaps she felt that twinge we all do when we need to explain just how different our children’s lives are, so difficult to comprehend for those not living it. Apparently she forgot who she was talking to. But then came the ‘kicker’ and without further incitement she volunteered, “well it’s not as though he’s going to go out and run a marathon now, is it?” I nodded wisely, or however you wish to interpret my nod, silent and understanding. But what I thought was that she is entitled to her bitterness, after all she had a rambunctious eight year old, with his future ahead of him, she was weary, perhaps resentful and each and every day was reminded of how her son would never lead a ‘normal’ life. I’ve had several conversations with her over the years and she was decidedly more hopeful in the past. But it struck me as sad that her perspective had apparently changed due to the wear and tear and had changed in a way which severely reduced her ability to experience joy. I know this feeling all too well.
Nevertheless I could not help but think to myself, what if I were to say to her a sentence that came from deep within me, not one of empathy or dear caring, but something more coarse and reactionary. What if I were to allow this sentence to well up and burst outwards into our casual meeting and say to her, ‘God in heaven but what I wouldn’t give for my son to be in such an excellent condition as yours!’ He can think and interact, speak, go out, eat through his mouth and taste the world.
But such expressions have no place, except to echo emptily in the sullen recesses of long buried anxiety. Such thoughts cannot be allowed to wander freely lest they gain ground and become a real presence.
July 23, 2013
I did my best, my son
I heard the call and did not rest.
I carried the night like a fire where there was cold empty light,
I crawled and spat and did not let you languish alone when you stood not in the fight.
I bore witness to what others could not see,
I gave honor to that unknown strength, a gift of you to be.
When you looked at me with careless gaze,
I longed to believe in that foolhardy praise.
The road is without end so let me catch my breath
While you continue to smile without goading
At the silent approach of death.
I am not brave as you might think of me to be
While I hide behind your innocence like oak is to the tree.
The waves of locks that I will not comb,
Your skin still supple and bright with life’s sweet tome.
Lest my anger form an edge and finds a string which to rend,
No need to raise my eyes heavenward brazenly
with forever and a day being all I intend.
with forever and a day being all I intend.
Voices and actions swirling about,
Bringing life to its depths, or heights,
Snuffling cause and redemption like a pig with its snout.
I will never rest with you by my side
All’s been recorded carefully without reason to hide.
Rest as you do, sleeping more or less
With seizures and pain, love in the gain
Not bottomless, not soulless
But a sweet caress.
If you don’t hear me calling your name in darkness, or light
Fear not that I have abandoned the quest,
I simply took a knee by the roadside to think for a moment
How to help you best.
I will never give in, I will never rest.
The ground aches and groans under our feet
And I drag smoke through my lungs
As a child would crave its mother’s teat.
Broken and shattered I shall not rest, I shall not fail
And hope, an empty cauldron and though fate a juggernaut of empty rail
Neither the trees nor the wind shall see my skin fawn pale.
No life is not neat nor that I persevered
rewarded with gold,
Neither the grand nor the sublime by us revered
As my memories will not see me grow old.
For old is death, that depraved lie
With crooked feet at best,
And if called aside to a summery isle,
I will not rest.
You will see me make myself blind, my son
With care and trepid worry
The end of time hastens not near
For it has no need to hurry.
In a castle of our making, bold in comfort with splendor fair,
A kingdom is born where sickness and health, breath and beauty
are all the innocence that we can bear.
I hope we still not have seen our best
For I am not weary, and I will not rest.