November 25, 2010


The old adage is, 'you are never too old to learn'. Meaning not, you are never too old to learn but rather there will always be something to learn no matter how old and wise you get. As we age learning new things becomes more difficult because of our less smoothly functioning brain as well as our mentality - they go hand in hand to some extent.
It should be, 'we are never too old to change'  since true learning effects a change within us.  

My grandfather was an amazing man for his intellect and breadth of knowledge. One day, around the age of 16, when visiting him as I oft did, he told me to come with him down to the little basement that served both as pantry and photographic darkroom. I'd been down there innumerable times, hunting for goodies, bringing up supplies for the evening meal and had always seen the trays for developing, the jars filled with developer and stop and of course the enlarger.  Having started to photograph at age four and sharing a darkroom since age 15 with a neighbour, it was all quite familiar, which he knew. And yet he took me on a tour of one and a half hours, of this little room just big enough to fit a car in, narrating the place and workings of each and every element with excruciating detail, as he was always wont to do with everything, until finally exasperated I asked him, "but why are you telling me all this?"
His heavily wrinkled forehead seemed to rise up several inches as he raised his eyebrows in wonderment. Then he said, "because all of this will be yours one day, youngster!" That's how he called his grandchildren, 'youngster'.

I couldn't comprehend at the time why he would be talking to me about this; was he going to die soon? He had told me, just prior to settling into the frustration of pension at 65, that "72. Yes, 72."
"What's that Opa?" I asked.
"72, that's a good age to go. No need for more than that."  I paid it no heed but then, three years after my tour of the basement, at age 72, he died. 

The thought of him transferring his possessions to me was crudely foreign because I had come to see my grandparent's little wooden house, amongst the dunes near the sea, creaking at night with the rough winter winds of Holland, was not just their house or a part of my childhood, it was my childhood.  Something which, since having started from age five moving to different countries, uprooted just as we were settled in, must stay immobile, immovable, unchangeable.

Can you imagine how i felt when my father, years later was forced to sell the little house, still in perfect condition, its wooden frame having withstood the brunt of seaside weather and Dutch storms for over fifty years? 

I inherited from my grandfather a problem with digesting bread. He was diagnosed with peptal ulcer and as a result would mostly eat white bread sandwiches with the crust removed and white rice. This, he felt, together with antacids, was  the best possible treatment and only the plain white bread, wholly devoid of any nutritional value would not upset his stomach too severely.  

I contemplated many times using my grandfather's method but, being somewhat a 'golden ageist' and later Naturopath, I stuck to my organic millet and rice bread, whole grain everything and kept on eating bread with a passion.  But it wasn't working and all the signs of my grandfather's affliction manifested themselves. This wouldn't do and I had to go beyond, not only my grandfather's way of thinking, which was static despite its wonderful breadth, and beyond my convictions, to find the change that would allow me to continue eating wonderful bread.  

Finally I found sourdough bread, like foccaccia and other whole grain variations that, because of the natural fermentation give my stomach quiet and allow me to fulfill my breadly desires.  I wish I could have shared this with my grandfather, although being so stubborn he probably would have brushed it off. I'm certain a lot of things could have gone differently for him, being so well read, with much unique experience in his life, if he had been more open to change. 

His lack of change stands as a stark reflection for me. Constantly i ask myself, "is this happening because I am unable to see the change necessary to get out of it?"  It defines my approach to Segev where I, at least once a year, completely erase my knowledge of him and start afresh, studying, asking questions, meeting physicians, looking for something I missed, overlooked and hadn't thought about previously because I was stuck in a certain way of thinking. Sometimes perhaps even being afraid of changing what appeared to work. 

Certainly not even one time have I failed to discover something new and it's about that time again, to jump into that new perspective, since without that little change at the right moment, we might get stuck forever, attached to things of the past simply because it's comfortable.

I'd like to be able to say, 'gosh I miss that house!', but it is inside of me, transformed into an additional force looking for, of all things, something new. 

November 23, 2010

A morning like this

On a morning like this, some might say that coffee is your best friend. On a morning like this, coffee is actually my only friend. Breakfast is aspirin. But still I smile as I hold Segev on my lap after picking him, stiff as a board, from his bed and sit for a moment to catch my breath before making the trek to the dining room where his chair awaits.

I smile because it makes me happy to be able to hold him even for a few seconds of normalcy, without screams, without him being in pain, reacting cheerfully (Segev), stretching his powerful little body and me struggling to hold on to him.
It just struck me only now how strange that is, that he has no conscious control over his body (except sticking out his tongue on occasion and that rare but overpowering smile), lacking any of the proper reflexes and yet he stretches himself, mind you with his arms by his side, but still.

I will raise his arms above his head and say to Segev, "stretch!" and if the time is right he will stretch, smiling, always smiling. But this morning, though it may have been a "stretch!" moment, I didn't simply because I couldn't. On mornings like these, when you have had a very tiring day before and an entire night with only a few fleeting moments of sleep, up to thirty minutes worth at a time, it's best not to tempt further the damage lurking in your body, waiting to spring forth.

On a morning like this one I still have to take care of Segev, alone in the house, prepare his ketogenic meal, his medications, his inhalation therapy that holds no less than five ingredients, all within a restricted time schedule. Don't forget anything Eric, no, don't put Segev's mug with his food in the refrigerator, you heat it up in the microwave.

The fact is that on a morning such as this, when what has kept me from sleeping is not only the regular routine of Segev not breathing due to a mucus plug in his bronchials, the physiotherapy at 3am, turning him over, massaging his stomach, letting air out through his g-tube, changing his diaper or suctioning him. If that were the case I would have been able to hold out for a night of luxurious one hour stretches of sleep, congregating to my beloved five and a half hours total. But last night was a night usually reserved for the three days that Segev is not with me; the nights when my sleeping pattern is the same due to my nefarious enemy that sees me go to bed as late as possible, out of fear. 

Fear of pain. Constant inflammation in both my neck and shoulders. Yes, both shoulders so that the choice is not between sleeping on the good side only and then losing circulation but at least being off of the painful side, both shoulders so that the choice is simply, which one hurts less. Right now I can barely lift a pillow with my left hand (I'm left handed) because of the pain. Anti inflammatory drugs exist. I've taken them. Again and again. Natural medicines are my forte so they have been used as well, repeatedly. Rest has been tried, that is to say, no weightlifting (which I need for my back in order to lift up Segev so many times a day) for a period, all to no avail. The simple matter of not being able to completely and utterly allow the area to rest means that for many years now I have exacerbations like this last week, culminating in last night and this morning, where only technique allowed me to pick Segev up out of his bed and caused me to linger a little longer on the edge of my bed, gathering courage, honestly, to move rapidly down the long narrow corridor, Segev's arms flailing dangerously, to put him in his chair. 

When you suffer repeated pain in this fashion, the fact that it is bearable pain is kind of negated by the emotional charge that has accumulated from it being a constant nuisance. In other words it is very frustrating. Others aches I have found a way to deal with, my loose ACL for example, which necessitates wearing support bandage if I want to be able to carry Segev up or down the stairs is under control since the necessary surgery would put me out of commission, which of course I cannot allow.

The last time I went to an orthopedic physician because nothing was helping and I simply could not fall asleep for two days from the pain, could not lift or even hold Segev anymore, he said to me two, apparently contradictory things, "you probably caught cold, take some aspirin", and, "you have the neck of someone at least twenty years older."  So it's not always easy to get those dreaded medications, so strong that they can do as much harm as good. But you know that when you reach your limit, you grasp at straws. Not so good to have to take care of yourself all the time. 

That's what PartnerX told me when she left to move abroad, "take care of yourself, Eric". Oh, OK, good thinking, I'll do that.

So on mornings like this what else is there to do but whine and complain on my blog? There is only coffee and aspirin (and omega complex and arnica and ruta, yes yes) and Segev of course. He's doing alright by the way, average let's say. Over his lung exacerbation this week, breathing is rough but stable, bowels are problematic, troublesome and painful but not hysterically so and he's only vomited once in the last week (at his mothers).

As long as I can stop myself from putting the Coffee in the refrigerator to heat it up, this Morning might actually pass into an Afternoon instead of dragging on to the Night. An Afternoon is of course different in every respect from a Morning like this. An Afternoon means things will be calm and I may actually get to take a Nap, which is so rare that I have to capitalize it. One can only hope that this change will occur. 

Yes, I just used the word hope, since when all rational thought has left, hope fills its place with whispers of magic, flirting with your conscious mind like a will 'O the wisp, taunting. A Nap.

November 20, 2010


Segev is sitting in his chair. There is no need for supplemental oxygen even though his breathing is rough today. A kind of staccato blanket of sound, rasping and choked, coarsely allowing air to enter his lungs but also his stomach.

He starts to moan uncomfortably. “What is it, Segev?” Soon his legs are thrust forward, then one leg recoils and is thrown out again, his left and right arm slowly, unevenly contract. The moan is louder, more urgent and begins to take the form of wailing. Your stomach, I think to myself.

“Come Segev, let’s get you out of the chair”, and I unstrap his hip restraints, catching a forearm in my face as I bend down to him. He complains loudly. He is nestled in the chair, the side supports pressing slightly and I slide my right arm behind his back steadying my stance and thinking about the distance of the wheelchair to the couch where I will place him to work on his stomach.

Segev’s chair is too close but the urgency of his cries makes me nervous and I lift him up out in one sweeping motion. Sixty six pounds of contortion that above all I have to keep safe, navigating the short awkward distance, leaning over the couch but forced to place him as gingerly as possible. The last few inches I fall forward but Segev is softly accepted by the cushions.

I begin pressing on his abdomen, to palpate any hard areas. He is complaining a little less. “You know I’m going to help you don’t you Segev?” His answer is a seizure: he stiffens, exhaling forcefully, a half smile locked on his mouth, arms and legs jutting outwards. He stops breathing only for a few seconds before some misguided swallowing starts, collecting saliva which then enters his lungs. I scratch the bottom of his feet. He starts swallowing more rapidly, loudly, coming out of the minor seizure and begins choking on the saliva, his eyes darting toward one side. I lightly press under his chin to force his mouth closed and he begins breathing normally, the dynamics of his swallowing restored he no longer chokes and I continue pressing on his abdomen.

He already had a bowel movement today, a normal quantity, so first I must check if it it air in his stomach causing his discomfort, learning, after having seen how Segev can complain for hours and finally let out a small sharp burp, two even three hours after a meal, finally releasing the pressure and allowing him to calm down, fall asleep, to instigate a regimen of checking for air in his stomach each time prior to giving him to drink or eat or medication and when his breathing is particularly unregulated.

Massive amounts of air reside in his stomach, causing him to vomit if not caught in time or sufficiently, as well the g-tube diameter having become too narrow for the hole in his abdomen, air is sucked in along the sides.

The one-way valve does not want to open in my direction, doing its job, so I attach the feeding syringe, open-ended, to the feeding tube and this allows a rush of air and liquid to bubble from his abdomen.  He looks more relieved and quiets down, almost immediately closing his eyes.

Two hours later he wakes with a seizure, always a seizure, and the complaining starts again.  While he slept he was given inhalation, not ideal because his breathing is even more shallow when he sleeps, but necessary to keep his lungs moist and able to bring up the monstrous quantities of phlegm that constantly accumulates. Also I gave him to eat, as the ketogenic diet has very regular hours and Segev must have five hours between his meals unless I want him to vomit, the semi closure of his stomach that is upposed to arrest this, the nissen fundoplication, having released years ago.

The waking seizure passes slowly. “Hey Buddhi!”, I chime, “You were sleeping, Buddhi, and I gave you to eat while you slept” I inform him. He smiles and gets caught in another seizure. This one is small and lasts only a few seconds but again I do need to close his mouth to restore his breathing. 

His voice comes out raspy and stops suddenly, then starts again. His swallowing makes an irregular clicking noise, somewhat muted meaning he has a mucus plug in his bronchial tube somewhere. He swallows hard now and his breathing is irregular as his chest rises and falls abruptly and deeply.

Usually a plug only happens after he’s had a longer sleep. I pick him up and sit down on the edge of the couch, balancing him on my lap with one arm behind his back, supporting his head with my shoulder and begin clapping on his chest, side and back. Then I put my hand on his back and administer chest compressions with my other hand. I start again with the clapping, cupping my hand to get that ‘thump’, ‘thump’ sound which indicates a certain degree of suction, driving the moderate force deeper into his chest wall. More compressions on his every second exhale, the first exhale always being too superficial and ends in resistance on his part if you attempt to push through anyway.

The noise of the air exiting his lungs changes tone and I know that a cough is close, even imminent so I continue with some urgency. The phlegm is loose with a rush of air and I quickly activate the suction machine, grabbing the catheter tube and bringing it close to his mouth. The pulse of the machine is like an organic thing to me, I know it will help me and I see it as an integral part of Segev’s breathing.

Segev finally coughs and a split second later I place the tube into his mouth, toward the left side where nearly always the phlegm rises and catch the culprit. Segev smiles as I suction, the tube sliding effortlessly into his throat with the gag reflex gone years ago.

The suction catheter gets a rinse in the big plastic cup with soap while Segev chuckles then locks his jaw open and goes into another small seizure. Should I put him back on the couch or back in his chair?

November 14, 2010

500,000 seizures have not killed my son


Surely, this is a mistake. Perhaps a bad joke. What child could have 500,000 seizures? It's not possible.

Whether it was a month ago or whether the actual day will be two months from today, Segev averages one hundred seizures a day. There have been some days, far gone, that he had only twenty seizures but also days that he has had well over 150 singular, separate, visible seizures. Segev has had roughly 500,000 seizures in his life.

Most are small ones, where he will stop breathing for only a matter of five to ten seconds, especially if you scratch the bottom of his foot or pinch his cheek. Some are monsters. I mean real monsters where it looks as though a monster is trying to tear him apart from the inside out. The over-familiarity with them helps to assuage fears somewhat but nevertheless require the same quick reaction, the same monitoring, the same oxygen and the same feeling of sadness that he must suffer them and be non-responsive the rest of the day, each and every time.

How much mileage does your car have? Can you think of putting 500,000 miles on it? What shape would it be in after that? Obviously the human body is so much stronger than a car, otherwise Segev would have died years ago, if not from the status epilepticus than from any of the other problems he has. The fact is that he has died on the operating table a number of times. How much has his 'maintenance' helped him and how much is simply his fortitude a factor? It's hard to keep a level head when you see so much suffering in so many different forms in one single person.

But even when his intestines had ruptured in three places and I stood in the waiting room while they poured the equivalent of an adult's body blood content into his little frame in an effort to keep him here, I was calm because I felt that he would pull through. Some may think this was merely wishful thinking on my part but I know different, having tested this situation many times. I simply knew that, the surgery itself at least, he would survive.  By the time the PICU had stabilized  him he was unrecognizable, so swollen.

While he lay there in the induced coma, on a ventilator, his hand would still twitch.

It's not some kind of milestone, this 500,000 seizures, not something to be proud of, just the opposite, I feel like I have failed Segev in some way. Impossible to know how it could have gone another way and as I've said he is undergoing changes even today, which should be nigh impossible after his brain has supposedly suffered such damage from the myriad seizures. 

This little bundle of humanity, born with nothing more than a very weak sucking reflex and a perpetual maelstrom in his brain but with a great heart that won't quit. A child that was given no chance of survival, no possibility to develop. No startle reflex, no reflexes at all. Consumed by pain in a world of darkness and confusion, nowhere to get a foothold on life, a person obliterated before getting to make a stand, never able to form an opinion, never able to make a choice.

A person like that is quite special and deserving of respect. Deserving of having someone nurture him and thus give him a dignified existence. For me nurturing is a complex issue that encompasses this idea of dignity while maximizing his ability to experience positive things in life. Maximizing may mean treatments and therapies but, having tried and seen Segev's potential does not lie with trying to make him stand or turn over since he cannot control his body, the maximizing lies with physical contact, the holding but also with using that moment to apply techniques of pressure to steady, change and encourage not only his bodily functioning but his knowledge that there is this love where one person takes care of another.

This is probably the most natural thing in the world and every mother knows this experience with their child. But when there appears no reaction from the other side for years you might begin to wonder. And as the complications of illness and disorganized bodily function necessitate a certain distance from that person because you cannot always simply hold them, they need help, treatment, care, you start to see more of the illness in that person and less of the person himself.

The child going into an institute, while never an option for me, will not necessarily make the distancing more severe than having him at home. With a child so utterly dependent it is a short path to seeing their medical status take over the better part of their identity.

Taking anything away from such a child is naturally an abhorrent thought, since everything was already taken from them. Their very ability to communicate so truncated that there is only enough to show displeasure or pain and contentment. This cannot be construed to say that they don't have desires or thoughts, simply that we cannot see them. Therefore we naturally cannot live a complete relationship with them, as we know it. 

Yet Segev surprises in ways that subtly show me there is much more understanding going on While I have never given up entirely on the notion that he might be able to grasp my hand one day, after twelve years of trying he still hasn't been able to do it. On the other hand, after having the ability to protrude his tongue for a few years now, with the qualification that it could not usually be repeated the same day, he has in these last six months gained the ability to repeat it within a few minutes of each other.

Sometimes assessing his level of consciousness is guesswork and so what appears to be a listening Segev is actually a 'don't waste your time, I'm out of it' Segev and vice versa. The fact that he is not able to grasp my hand though, does not tell me that he is not aware of what that is, nor that he doesn't desire to do so. He cannot communicate anything about this issue but in light of his tongue control, for example, I am going to assume there is much more going on inside his head than I can possibly know, despite all the stupefying medications. Rather like you would wish it assumed of yourself that much more is going on upstairs than is readily visible.

In looking at the best possible treatment for such a child, there is of course not one singular method. The point here is more to accept that being imprisoned as they are, such children should have their dignity pondered over, considered. It shouldn't be an easy task either, perfunctorily established  as though it has always been clear how extremely disabled children should be viewed.

If this is the treatment, what is the sickness?

Growth attenuation is something I had to think about for my son simply because if he were to grow to normal proportions, completely paralyzed as he is, his health would be more compromised by it. Fortunately for me, though he does grow, it is at a very subdued rate. Already he is a bit too much for me too handle and I have to watch his caloric intake to make sure that he doesn't gain anymore than he needs.  
One of the questions though, when considering growth attenuation, must be, how much do we know about growth for children in such a state as my son?  More importantly I think that certain aspects of the procedure, as the girl Ashley X underwent it, may be completely erroneous, such as removing breast tissue because of the effect her otherwise developed breasts might have on caretakers or the discomfort they may cause. Discomfort, on whatever level should never be an indicator for surgical removal with a child that is unable to communicate her desires.  Life-shortening or capable of causing severe pain are reasons.

Growth attenuation, a series of procedures, have been introduced and are advocated as a treatment, when in fact treatment is the application of defined methods and techniques to ameliorate a state of pathological ill-health or render such a state less severe, even pro-actively, for the very state of being extremely disabled which is clearly not a disease state itself. Here then you are stepping on ethical ground the firmament of which has not yet been established.

Whether considered grotesque mutilation or the blessed act of remitting harm and discomfort, the Ashley X advocates should understand that such procedures does not automatically evoke a fully formed model of dignity and nurturing though they imply, mostly by repetition, that it is.

Historically it is typical  of us to blunder forward without foresight, that's how progress can be made. Most likely the increased interest in the issue of growth attenuation as a result of little Ashley X undergoing it, though without the child having a choice and technically illegal, will make for fertile discussion and eventually establish guidelines that will seem more realistic than the horribly antiseptic treatment Ashley had to suffer.

It may seem tempting to view her parents as either brave or heroic for putting Ashley under this treatment since they apparently acted upon information that she would never develop mentally, never have any body control. This may accurately describe her condition even, I know that such a description fit my boy perfectly. But they were wrong about my son's chance of development because we are in need of better assessments. Assessments which can be written by medical professionals who are guided by the parent.

But I always do tend to hang around till the credits roll even though you know 'who done it', until the last throw of the dice hits the backgammon board, despite clearly having been beaten, because in those moments linger the idea of how things could have been different, there lingers the potential for other things, for change, for learning.

When you do that often enough, you get a sense of the potential that rests in dormant things, the potential, even if it is only an extremely disabled child's thought.  I know we can never know that thought, but I'll always play it out until the end, to give that thought some space to be.

November 12, 2010


There is no soft Jazz playing, relaxing melodies, but Segev has stopped screaming and the quiet after the cries for relief is the best sound in the whole world.
I've seen a soft smile on his face today, like a whitewash of emotion, transform the ugliness of pain. Sleep precious prince, sleep dearly.

November 09, 2010

We made the trip to the city to see the pediatric ears-nose-throat surgeon. After half and hour of going up and down three elevator towers in the mall/office building, after the sixth call to the secretary that, no, I cannot find it, that no the office is not to be found on the second floor anywhere she says to me, "where are you?".  
"City centre, where you told me the office is on the second floor".  
"No, Sir, you are mistaken we are in the building across the street called 'the doctor's centre'."
 "Go outside" she says. "Go out of the city centre"
"Leave the city centre" she adds. "Go out of the building you don't need to be there"
"Gotcha", I respond.
"We're not in city centre, Sir, you have to.."
"..go out of city centre, yes I understood that".
"Across  the street at the back there is an elevator, we're on the second floor."
"Fine", I sign off.

All this time Segev is doing well, he hasn't complained even once yet, his breathing is of course very good since we are going to see a surgeon about cutting a hole into his throat. His wheelchair barely squeezes into each elevator, the foot rest bumping up against the far wall, the doors barely missing the handlebar.
The elevator across the street in the 'doctor's centre' is even smaller. I press the button for the second floor and up we go. There is a dentist's office there. It is closed. I don't even have to leave the elevator and press the button marked number '1'. That's where the surgeon's office is. "You are mistaken, Sir."  My blood is simmering. No mistake here.

The surgeon is amicable, listens to my protracted, if precise, history of Segev. I only discuss what is relevant to this particular operation but even that takes about ten minutes. It is my duty here to impress on the fellow how labile Segev is and to get answers about specific issues like suctioning, vomiting, air passage, vocal chords and many other things. Segev starts to complain, very loudly. His stomach has been bothering him a lot the last few days. The surgeon turns on an industrial cooling unit he picked up from Batman's nemesis Mr. Freeze. As the cold air blasts me from behind it undoes years of care in a matter of seconds.

The left arm of Segev's wheelchair suddenly falls off.

The surgeon, listening quietly to my questions answers, "well yes, with the hole there is a direct passage, closer, proximity and thus much easier actually to suction. Better ventilation, certainly."
I ask him about the issue of seizures, the fear being that Segev's violent seizures could end up dislodging the seal or tube itself.
"Yes, well, when you have that, then of course the treatment is easier, the direct air passage, proximity, better", he responds.


His mouth and eye start to twitch and he begins speaking rapidly. The surgeon, not Segev. 

Segev has left the room in the mean time with his mother because of his screaming from discomfort. I am picking up screws off of the floor with one hand, holding the wheelchair arm in my other, the surgeon has not missed a beat and is repeating for the fourth time that we will have to see about reserving a bed in PICU. He has no pauses between sentences and his twitching is getting worse.

I thank him and get up but he continues talking, repeating himself. I shake his hand, apparently the most important moment of the meeting for me since it's obvious that an understanding of Segev's needs I won't find here, but if his hand tells me something...his hand is soft and light, like those neck cushions with the styrofoam beads in them. The hand of a surgeon. He knows what he is doing with a scalpel at least, after more than twenty thousand treatment hours, I can tell.  

Segev has quieted down and the trek back to the van in the underground parking, accessible by tiny elevator, awaits. Then a half hour drive home. Lifting the wheelchair into the van is especially difficult after the surgeon's bid to turn his office into the fortress of solitude.

He agreed with me that we could still wait a little, as a matter of fact he kept saying, "well, if, as you say, his breathing has worsened considerably the last few months" as though he didn't really see any necessity to do the operation and yet he added, "of course we can't wait too long.  Hole, better airway, proximity, easier, you know". 


The Porcupines - 1999

written for Noa as a night time story. Segev was less than a year old.

One day in a small part of the forest, behind some bushes and inside an old hollowed out tree, seven baby porcupines were born to Mr. and Mrs. Porcupine.
They lived happily in the forest eating all manner of little tid bits - nuts and berries that had fallen from the trees and bushes. They were very happy and so they decided to share their happiness and have children.
On the day that Martha Porcupine gave birth birth to her seven little porcupines - Nahum, Elisa, Shenhav, Kalya, Shoval, Noa and Segev, everyone in the forest was very excited because the Porcupines had so many good friends.

Perhaps she had miscounted she thought. "Perhaps you've miscounted, Martha" said a particularly stern Goose. "Perhaps you have only six little ones."
Martha would have none of these interruptions. She had counted seven and so there were seven. It's true that the gray brownish colour of all the babies does tend to make them blend together.
She put her hands on the babies and one by one counted them off, patting each on the head as she did.  "Wait a minute!", she exclaimed as she finished patting out six of her babies. She reached into the prickly bunch, wriggled her hand underneath and grabbed hold of the seventh baby. 
"Ah hah! You see?", she said, pulling Segev from under his brothers and sisters. There was a great big gasp amongst the gathered friends. Martha stood, holding up Segev by his legs, smiling proudly.
"What's the matter?" she asked.  Then she looked at the baby porcupine - he was entirely black!  All of his quills were extraordinarily long and jet-black. How can this be, she thought. How indeed!  She had counted the babies as they came out, but they all looked equally dark that moonless night. 
By morning Segev had wriggled until he found himself under his sisters and brothers. Being the last one out of his mother's womb he most yearned for that comfortable warmth.
A Black porcupine! Have you ever seen such a thing?

None of the animals could any longer contain themselves and they moved closer to the stunned Martha. Poking Segev, sniffing him - a tumultuous cacophony broke out as each animal interjected his or her opinion as to what had brought about this most strange occurrence.
But since all the food had long been eaten the animals moved off, singly or in groups - clucking, chattering, snorting continuously as they went about the more pressing business of procuring the next meal.
Mrs. Porcupine sat bewildered and joined the now thoroughly unhappy and thus crying Segev, shedding her own sad tears.
"Come, come" said Mr. Porcupine, wisely staying silent until then."You're over-excited, that's all. It's a wonderful thing that has happened to us." He looked at the ground. "Uh, I think."

The Porcupines went off to their home in the hollowed-out tree and began to take care of the babies.
Although Martha hoped and prayed - her little porcupine didn't shed his annoyingly long black quills for the more ordinary brown or grey. Segev would hardly eat and he grew only very slowly - he was a great worry for the Porcupines. But eventually he became bigger and bigger and his shiny black quills grew and grew until he was the biggest little porcupine that anyone knew.

Segev two days old

Diary entry October 2005

...I can feel it and it is indeed enough of a change that I feel confused.  Very little of the many things that were so clear and understood as to be almost taken for granted are now muddled so that I am not certain of anything now. It feels as if my world is being turned upside down. Even Segev is no longer clear to me...

...taking care of Segev has been so draining, but also has given me strength.

Devastating and yet from the ashes I've been able to rise yet again.  Broken, my heart, because of his helplessness, healed my heart because of his warmth and resilience.

Prometheus disseminated the knowledge of fire and I the knowledge of Segev's struggle to be seen as a person.

November 08, 2010

Addendum to Labyrinthine

I don't understand hope and therefore I do not believe in it. Nor do I believe in hope's opposite, despair. You see you can't have one without the other. You can't have good without bad. The more you try to focus on the one, the harder the other will push to enter your perception. 

Perhaps one day someone will explain to me what hope means. I know what faith means. That is belief without understanding. I know there are things I do not understand and yet I trust in them, believe them to be necessary or worthwhile, so I know I have faith. But hope is the wish or desire that there will be a positive turn of events. It's true I don't have wishes but I do have desires. I desire that certain people will be blessed with good fortune since their lives are not particularly pleasant. 

Mostly though it is a lack of wishes that I feel permeate my being. I don't wish ill will towards anyone. Not even those that may have hurt me intentionally. I desire to be healthy but that desire must be tempered with action, conscience, will, otherwise it is merely empty hoping. Ahaah.  Is this where hope comes in? When you desire something, you wish for it, but you don't have the understanding or the ability to actually do something in order to bring it about? 

You see I don't see the point in that. Now if I try to do something about a situation, I hope I will be able to. So when there is action, an actual presentation of will in order to effect change, then there can be hope. At least for me. So hope is then a part of actually doing something, putting into action the will, as I said. That's kind of close to my definition of prayer: the (meditative) state of concentration, sometimes brought about with the assistance of particular repeated phrases, that enables a person to move from idea or desire toward action. I'm certain very few will agree with me on these things, even though I've been dealing with theosophy, religious studies and philosophy for decades as a point of vested interest, my thinking can either be wrong or simply not suited to everyone.

In any case, as long as I see hope as being a form of prayer and prayer a preamble to action I can be comfortable with using the word. The zen-state attempts to roll all of these together: intent - focus - action, preferably into one single moment, culminating in supreme awareness of one's place in creation. I wonder if Segev isn't there most of the time, since awareness is not intended as a thought but much beyond that. Something seems to me to be missing from this contemplation of Segev when I think about these things. Perhaps there is something above Segev that holds the awareness and he himself is not required to have this lucid moment. We are after all made up of much more than just our conscious minds. 

So the Zen state seems a bit overrated to me. That moment of supreme awareness may be much more than we can consciously process. Greg Lucas seeks in his own way in his son, something which may be just wishful thinking or emotional indulgence on my part, to believe that Segev and children like him, have a much higher and pure connection, uncluttered by concepts and that therein lies one of the things we can learn from them. Whe we talk about these things we break them down into elements but of course in such children there is no distinguishing the moment, the action nor the intent. Or perhaps I am merely trying to extract water from stones.

November 07, 2010


When I was a teenager at bedtime I would tune my shortwave radio to Cairo and listen to the Muezzin casting calls to evening prayer in lilting song. But shortwave being what it is the station would wander and the sound enveloped itself to distortion.  Fragments of singing were juxtaposed in senseless, sometimes backtracking cycles so that I could only hope to catch the rhythm of religious chanting and exotically drift off to sleep.

Segev processes information in much the same way I imagine. His brain, though broken, missing pieces, shuffled about, is still in essence a human brain programmed to process information through his senses. He doesn't have use of his limbs in any direct way that can be construed as sensing the environment but he can hear. 
He is twelve and a half years old, which means that whatever development his brain could go through ended long ago. This doesn't mean he can't learn things, just that the brain is quite fixed with no ability to change.  

If he receives information in the way that I sometimes tried to listen to the shortwave transmissions from Cairo, until frustration at not receiving enough sound to make any sense of caused me to turn it off until the next night, then you can imagine with what monumental difficulty he must try and react to any staccato stimulus he perceives. 
A fly has walked on his eyeball before I could shoo it away and Segev's reaction was absolutely nothing, not even to blink. Can you imagine what it means when he smiles as a result of hearing my voice? 

When I go to check on him or to pick him up from his mother's it takes about twenty seconds before he comes out of his daze and recognizes me. And then he begins, rising crescendo of moans, head cocked back and then to the side, wailing excitedly, telling me all his stories. For about sixty seconds and then he fades again. Tired out or simply back to the labyrinth, I don't know, but next to impossible to elicit a response soon.

The picture of Segev at the top right of the blog was taken when he was sleeping, his hands purely by chance finding that position as though he had curled them close to his face like any normal child and a smile on his face in blissful sleep, the only time I have ever seen Segev smile while sleeping in all his life.

I'd like to believe that he dreams though he has no rapid eye movement. That is most likely due to his paresis. What images come spontaneously when you've never had the benefit of sight? I've never looked into this. Or the ability to understand the images if you suffer cortical blindness? Sounds? Can it be that sometimes his mind believes that what he hears or if he sees, vague shapes, is just part of a dream? I mean, how can his mind learn to distinguish between dream and wakefulness?  

Perhaps it doesn't really matter. Somehow he is processing information; I taught him to stick out his tongue. He is getting better at it. He can even repeat it within a few minutes but then must retreat, as usual, to the labyrinth.

He goes there often, disappearing, but lately has been reappearing more, suddenly opening his eyes with a great big smile, not a gelastic seizure, only to instantly fade back to the darkness of his down-time, the labyrinth. 

With Segev I don't think it's about what he may or may not see (that new thing) or what he hears or smells, (though when I hold him he definitely responds by being more relaxed and quiet) that affects his processing, any more than an auditory dream that he has might. You might even say that the very lack of sensory input that he has tends to allow internal phenomena to extensively affect his brain's 'composure'. Internal mechanisms, limbic system (if that means anything to you), physiological processes as part of our emotional learning skills, but without an outlet. 

I refer to this as an accruement paradigm and while Bennie Waddell nicely states,

"essentially ALL non-typical children have a common worldview that most of the rest of don’t have. They have the purest form of connectivity with other humans. They have the purest form of love, of peace, of forgiveness, of faith, of giving than any other individual on the planet."

like a raw nerve or live wire, this connectivity results in unfathomable transformations inside the children which has no normal way of expressing itself.  When Claire writes about the difficulties of Sophie's shaking it is in part because of the unpredictable nature such expressions have.  Classic seizures are seen as propagation of cyclic electrical discharges in the brain but it is known that emotional circumstances can bring on seizures and in the accruement paradigm I propose that even physiological disturbances, as part and parcel of a particular child's disabilities can also result in seizures. 

It would seem to me that one of the main elements rests with over-stimulation and when a child has such a minute window for perception, every little thing that enters that window will have a disproportionate effect.

The brain's natural state is to be awake and so while Segev will continue to wander the fields of his darkened mind, sometimes losing his way in the labyrinth, if only for a while, I wonder if he brings anything back with him that has helped him process conscious information or that only in those brief conscious moments we share, his mind knows the difference between dream and what we call reality.

November 06, 2010

Should we really be talking about this?

Let's start at the end: what will be will be.

It isn't that I am giving in to fear or to assuage my fears. Yesterday when I went shopping my daughter came with me. She will be sixteen in January and she has had Segev as her little brother since she was three years old. We are still sitting in the car and I explain to her, in an attempt to inform in a calming way, the need for Segev to undergo the surgery for a tracheostomy. It isn't the first time she's heard me talk about it. She is nearly in tears.

I wish I could just cave and cry because it's nice to let yourself go like that. Not have to be strong all the time. But when I cry, and I've only started recently, it gives me a headache that lasts for a few hours. I cried for Anabella Ringgold when she passed away, for Owen and for Sebastian when I discovered his story and though he had already passed away I wrote this poem in his honor.

My daughter let me know that she well understands the danger for Buddhi having to undergo general anesthesia. I reassured her that I was not in a rush but on the other hand this has been four years in the making and his situation is getting worse.

Usually when a parent is in such a situation, and here it doesn't matter if it is with an extremely disabled child or not, a doctor will inform them of the necessity for the life saving or life prolonging procedure.  Some parents leave it at that, others investigate, learn, form an opinion, get a second and third opinion and then finally, like Timothy Ringgold and his wife did for the treatment for Anabella, make a decision to go ahead with it.

The outcome is uncertain. In the Ohtahara support group on Yahoo the notifications I receive are of parents looking for answers, procedures, medications, experience and also to notify that when they woke up that morning their daughter or son was no longer with them. When Segev had the VNS implanted it was the result of six months of convincing the neurosurgeon since he didn't like the odds of the surgery going smoothly with Segev being in his fragile condition, which wouldn't reflect well on his record.

When I wake up in the morning, after a normal night of getting up to Segev several times to perform physiotherapy, inhalation, turn him over, change his diaper and suction him some four to ten times, I wake with the feeling that, if he isn't with me anymore, it's OK. I mean to say, that I am aware of the possibility, the danger being ever present. Technical issues can lead to this with his pulseoximeter which sometimes slips off and doesn't sound an alarm. He hasn't had an episode of central apnea since the operation in '06 but of course his seizures cause him to stop breathing and SUDEP is often a result of suffocation after a seizure. 

Segev is so fragile in that his staying only slightly ill instead of plunging into full out severe lung infections is always only a few hours away. His body tricks him into not breathing. He is utterly defenseless, even against the ravages of gravity on his soft tissue, his veins, tendons and cartilage, his spine. Ironically, if not for his massive number of seizures each day, his muscle tone would be next to nothing and, I theorize, he would waste away even quicker. This is quite a thought by the way, that his seizures have given him a physical strength that assist him in some way.

That is the tension that exists each and every day and every hour: the difference of being ill and heading toward an inevitable end versus the will to survive and the tremendous effort and hundreds of little details that come together to make it so. One breath in, one breath out. Keep everything functioning. Only so many experiments to be made, with medications, with therapies, positioning, oxygen.

Segev doesn't complain about his breathing, no matter how bad it gets he never moans or cries or screams because he is breathing badly. If he cries then it's because he has real, hard pain.  This is why the sound of babies and children crying is so very nerve racking for me. Segev doesn't cry for food or because he is cold, it is from pain.

So he doesn't cry often, but when he does, it can go on for eight hours without stopping. Heavy narcotics can relieve him for fifteen minutes to perhaps an hour, but if the source of the pain isn't found and corrected it will just go on and on. He won't get tired, fighting, his body moving jerking and twitching for hours without respite.

Thankfully this has become rare. If I think back to the amount of suffering he has gone through I think, a normal person can not go through such a thing, not physically, exhaustion sets in, and not mentally. But Segev takes it. If he can so then I can shut up and hold him for five hours, pressing, massaging, administering medications and treatment, remaining (for the most part) calm and focused, paying attention to changes, sensing, so that I can either think or feel a solution. At the very least hold on. If I'm not stronger than him, I'm useless to him. A kind of reckless abandonment possesses me.

I look back and say, there is no way I can go through that again. I don't know if it is easier or harder. Things are changing. Have you seen the video on this page? Segev looking. Where did that come from? He is still growing, ever so slowly, his body maintains proportion, strangely.

And now the surgery. Everything that came before, relevant. So you see, every decision is connected, by emotion and by every moment of difficulty leading to this moment, the looming surgery. Of course this is a separate thing, but the difficulties accumulate, the lack of sleep continues, the stress more than necessary.

Then we look for calming influences and we look for strength. Still there is a risk and to take a risk you need courage. A mother like Jennifer needed enormous courage to say at her son Owen's funeral,  

Owen provided light and goodness to all those around him. He graced us with the gift of his smile, his laugh and his wide-eyed gaze. His effect was so profound, it is easy to imagine that he was heaven-sent for the sole purpose of bringing love to us earth-bound mortals.

There is no doubt: his energy was generous and loving and all encompassing – his value to this world is not to be underestimated.

But as I contemplate this thought, the circle of Owen’s life now complete, I know that there is much more to his story than this.

Owen came with immense challenges. Throughout his entire life, he was impossibly – sometimes unbearably – vulnerable and needy. Was he this way solely for our benefit? Surely there are easier ways for a soul to spread love in the world.

I believe he came as he did because he was on his own path of discovery, growth and healing. To only see him as an angel sent from above is to possibly miss the entire point of his life.

Perhaps his brilliant light shone because Michael and I chose to expose him to the world, love him completely, and not hide him away – and this community responded by looking – by holding our son in its compassionate, loving gaze. Maybe this is what he came for – to fulfill his soul’s need to be seen and loved, broken body and all. Perhaps his karmic need to be loved was so great that there was no option but to arrive in the body he did.

If this is the case then the value of Owen’s life is realized not in spite of his disabilities, but because of them.

Owen came to us, in his perfect broken state, seeking unconditional love and care. Your profound expressions of love and compassion, every day of his life, showed him he was worthy – giving him the lightness to smile back and say thank you.

Owen could have remained invisible, as so many like him are. Instead, we loved him deeply – and because of this I believe he returns home fulfilled and whole.

Words of very deep wisdom, like Claire's  My Prayer, absolutely brilliant. I view these two pieces of thought, Claire's and Jennifer's, like bookends and Segev, Owen, Sophie, Anabella, masterpieces of life. But never with the "what if?", what could have been of potential gone astray, of things lost. But rather,

where frailties which can no longer linger in blossom 
are all the potential that God has forgotten

the hidden things that need to become visible, not truly forgotten, only the appearance of forgotten.

Very well then, everything visible, the fears for Segev's future, the constant worry, specific to very real issues, open for all to see. Not, we shall see what happens, though, but rather looking at choices, to uncover that potential for the best possible future for Segev and not just, what will be will be.

November 03, 2010


For those who come to this page solely for the tracheostomy information please try this site: Aaron's tracheostomy page !

I will be taking Segev on a trek to see a surgeon about doing a tracheotomy so that he can breath "without trouble" through a tube.
I cannot express enough how dire a state of mind this puts me in. For four years specialists have been warning me that Segev's airway could collapse. Despite the fact that I own several utility knives I don't want to find out how skilled I am at performing emergency tracheostomy.  

Segev's breathing is getting much worse and here I am referring to the upper airway and not his lungs though they are acting up more frequently.  It isn't only the noise, his breathing is laboured with a heavy rise and fall of his chest and even when he sleeps he is no longer quiet. Again, Segev has choking issues at night because of mucus plugs, despite inhalation therapy but here I am referring to noises and effort that he has begun to occasionally make also during his fitful nights.

Segev's last operation was in '06 for fitting the VNS device. They had trouble with him then even though it is an operation on par with fitting a pacemaker, in other words, fairly routine. When they allowed me to the recovery room I was ready to strangle people because I felt something was wrong. Segev was literally gasping for air, his head bent backwards terribly, the anesthesiologist and a male nurse standing looking at me with curious expressions. "Is he normally like this?"  "Yes of course, aren't you?"  He came out of the operation without the use of his vocal chords, "an odd coincidence".

The procedure for placing the breathing tube, percutaneous tracheostomy, is of itself not so frightening to me. General anesthesia for Segev is a big risk. Keeping Segev's head position aligned, his temperature up (it's been known to plummet to 35 C, hardly life threatening but makes for longer recovery and disturbs Segev's delicate balance) and the complications of having a snug fitting tube in the throat of a child whose seizures produce such feats of tonic strength that you would need the incredible hulk to bend his arm also trouble me. 
With his throat stiff as concrete from a seizure, dozens of times a day, I'm not certain the procedure will hold as the tube can move, become dislodged. Suction, which Segev needs up to 50 times a day, on demand, not per schedule, is another major concern since he needs to be able to bring up the phlegm with a cough. I'm also not certain the surgeon, though not a young man, will be the one to address my special concerns. 

So if any of you out there know of a child that has over one hundred seizures a day (or even just a few big ones) that has a trach let me benefit from any information you can share. I want to make a good decision here, one that I've been able to put off for four years but apparently can no longer.  All advice is welcome.

November 02, 2010

Take a walk with me

Just as the picture that heads my blog, I dearly enjoy walks as both a chance to relax, 'take it in' and at the same time get some exercise. Some of the leisurely walks I have taken in the last five years have been with my daughter (she took the picture). She's always up for a walk. And being from Holland, rain for example, has no effect on the decision to go out and happily I have been able to pass that on to her so that when the rare opportunity arises, we don't hesitate.
When I was living in Holland (the real place, not the allegory) I relished going to the seashore during winter storms, putting on my motorcycle helmet to combat the flying branches and walk along the beach until I could feel the stinging wind no longer, couldn't remember if there was a reason why I came to be there.
This kind of behaviour continued in Canada, with the temperature at 25 below zero, where I would go out at night into the empty streets walking around the neighbourhood, the dazzling orange street lamps shouting at me, "Go back in you fool, it's too cold!"
In contrast to here, in Israel, where the summer temp reaches 40 celsius (104F), I would go out for a run  behind the village up the hills and beyond, in the midday sun.

Nature is of course beautiful, but in its intricate relationship of beauty and danger, demands respect. In this way, as I walk through the forest and see deer, coyotes, poisonous snakes, the baking sun, I think not only, "watch your step" but as a reflection of the choices we make in life, to look at myself and ask, "how am I fitting in?"
 Where do I fit in? When I leave the house I have to return to it as well, for Segev's sake. Not get back on a motorcycle and risk injuring myself, "if you have an accident who will take care of Segev?" When I am in a treatment with patients everyone knows, two calls in rapid succession signal an urgent issue with Segev. Obviously this has led to the phenomenon that each time the phone rings it makes me apprehensive.
On my walks I try to put things into perspective, to see if it is better to have my worries "fit", to plan,  feeling as though eyes of nature are watching. To understand exactly what is really needed and what isn't.  I try to see things through others' eyes, really wishing to be able to follow the path of change, so often needed. Eyes such as those of my daughter, who surprises me with her keen, evolving mind and developing intuition. I know that she sees the troubles I go through from quite a different line of sight, disconnected from my own inner complications.
Nature can give you some direction because in nature very rarely do you see something that isn't true to its intention. So how do I fit in?  What is my intention?  When you have the answer to a question like that it is not always a case of simply to remember the answer. My walks serve to remind me of an answer that somehow, sometimes, becomes occluded and less palpable.
It gets more complicated. You can see the answer but your implementation must remain steady, veering of course is a constant struggle. I've been afraid before that losing myself to the cause of keeping Segev going is a bad thing. This arises when you feel so utterly driven to find that 'reasonable existence' for your child that things break along the way, flying off like debris. There is a fear thatI know I could not live with myself if I thought, at the end of it all, that I hadn't given everything that I have to give for this endeavor to care for such a fragile human being. How you keep this going is a personal decision. If someone asks my advice then it will be, do as I say, not as I do. As a healthcare practitioner that is my job, to tell others what is the healthier course of action, what method or direction or system or technique or diet or exercise or way of looking at things will allow the best outcome.

It's madness, utter madness, I'm told. What am I trying to do, 'Save the world'? No, not really. Just my son, my little son who can't defend himself, can't speak up for himself, can't decide. As I have said, he can't win, he can't lose and he can't choose. At least when we have a choice we feel empowered, in control. But when you have no manner in which to show whether or not you have the ability to decide, what do you have?  What ever it is, Segev has it and I intend to work it out, either until he let's me know what it is, or until he loses it.