August 05, 2013


While new posts are not to be expected, with further consideration
I will leave the work and links accessible. My last post is actually
somewhere else, at the bloom blog, here.

Fare strong and thee well,

Eric Fischer

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.

July 21, 2013

Running on empty

This is more or less how things went.
In 2006 I lobbied a neurosurgeon to implant a vagal nerve stimulator in my son in order to attempt to better control his myriad seizures. The ketogenic diet then was in its infancy here in Israel. As a matter of fact when I had approached a pediatric neurologist on the matter his answer had been, “well if you want to occupy yourself with voodoo, you are on your own.”

July 12, 2013

With notice

When I go to sleep at night I cannot throw my clothes into the laundry basket or put them down in simple disarray,
But place them well within grasp, separate and on display.
For the call can come at any hour to bring about the task,
That moment of eternity, while I drink its empty flask.
A few simple words hushed, rattling  the mind with increasing urgency,
dread arises and with a flash I am up, “come quickly, it’s an emergency.”

June 24, 2013

The times

His eyes do not search mine for answers, that bitter sweet approach, though my heart aches gladly at the thought that questions occupy his mind. Instead it is myself with blank stare opposite overwhelming answers from his endless eyes.

There are times when words are the least of our worries, when we concern ourselves with the finite and tremble.

June 18, 2013


So many years on my part of not watching television (I don't own one), never listening to radio and newspapers frivolously scanned for headlines while waiting for coffee to-go and  the further censoring of information by directed and specific searches on the internet and yet the writing is clearly on the wall.

"Stick to individual things", was some good advice I was given lately. I  was told to compartmentalize in order to counteract that natural inclination of mine to make connections between disparate issues all the time.  A kind of anti-reductionism, if you will. But being an intuitive this makes perfect sense since intuition is about what is around the corner, out of sight, working on the puzzle with islands of pieces instead of dutifully building the linear edge first.

June 12, 2013

When you can't come to the rescue

Taking care of my son in 48 hour shifts (it used to be more) is not only draining because he can never leave my sight and there are such a multitude of tasks to perform but especially so because the pauses in between, when I can sit with him idly, are short and irregular and thus do not allow for continuity of normal deed or thought.

June 05, 2013

This account

The days of our lives

that naturally present a certain measure of dullness as in between providing moments of physical and medical therapy, playful moments, dramatic moments and the inane seizures which come irregularly, without warning but with me ever at the side of my son, diligent, ever ready, you consider your changing (evolving?) identity.

May 30, 2013

This might sting a little

If it's done slowly

there is more of a likelihood that events will fall into place. But Sunday morning, as our planned visit to Alyn hospital in Jerusalem was underway, I stood helplessly at the garage waiting for Segev's van to become available. The engine overhaul complete I was still required to test drive the car before the trip to Jerusalem. The delay meant we finally arrived at hospital several hours late for the slew of scheduled appointments.

May 18, 2013

The well is deep

For a brief  period there was a religious woman who came through social services to help with Segev. She had the right spirit but no direct experience with a child like my son, although she had several children, one of whom is somewhat disabled and another with more serious, autistic spectrum issues.

May 17, 2013


Day after day,
the level of anxiety has been considerable. Since the last time I posted there has been no steady reassurance of resolution to his double pneumonia as his oxygen parameters refuse to stabilize, dipping both suddenly and violently.

May 14, 2013

Another kind of moment

It is understandable that there seems to be quite a contrast between the rough sentimentality of the previous post and what is happening now with my son. But in actuality it is the dense yet fragmented understanding of his precarious life that brings with it a searing beauty.

May 04, 2013

In the moment

I just realized something, about Segev, about our moments together. It came as a soft call, like a voice amongst the trees, that Segev knows he is loved. It came at a moment when he woke with a seizure, as he always does. Whenever he transitions from sleep to wakefulness, and often the other way around, when descending into deeper sleep, he has seizures. For years I believed that like his many other fits, with this seizure he was not conscious, until he started to move his locked eyes to and fro. That was always the signal.

April 29, 2013

Some of the things we do have little consequence save for ourselves and our immediate family. When I began writing on this blog, a few sporadic poems formed part of that attempt to chronicle family life with Segev. Though not much of a chronicle since the majority of the posts were subsumed by my commentary on this claustrophobic life, leaving less room for the few simple moments as the catastrophic struggles of my youngest son readily stood out. 
Perhaps as a counterpoint the fewer words of poetry made sense. A spontaneous search for balance within the vociferous conjugal of altered life, the diatribe that burns within which seeks to preserve that which is without.

April 23, 2013

A kiss

I kiss his hand. It is damp and he flickers in and out of troubled consciousness. Do you understand?

I'm here, watching him, watching over him but where should he be? He seems everywhere, in everything and yet I must keep him contained, in this tiny little life where anything is everything.

Do you remember what they said?

How spare of life to deliver success
when all the blossom gotten for is that of duress.

Where frailties which can no longer blossom
are all the potential that God has forgotten.

And so it goes, again.

Segev plays a faux recovery on Saturday

I was up last night, more than usual, tense and at the ready as usual since Segev is once again sick,  but surprisingly not upset . His lungs again (for a full description see Segev’s facebook page).

I would not be surprised if you were to find it a reasonable thing if I tell you that I have thought of Segev’s end a thousand times. But the truth is, I have never thought about it. Never think about what will be after Segev either. We are in the fight, quite simple.
I’m not certain when the big double pneumonia will come along that will be too much as is the case for many, many children, who like Segev are multi-complex disabled, medically fragile and, significantly, suffer from Ohtahara syndrome.

April 21, 2013

On giving up

There were times when i thought, "i can't go on", times when i thought about giving up. No - times when i felt i had given up. Given in to the anguish and let it fester into despair.
Silly me - confusing exhaustion with giving up.

April 16, 2013


"You cannot lose that which you never possessed", may ring true in a wide variance of situations. I wonder though in the case of love if it carries any weight. If you love someone and that love is not returned, then you have lost something in potential, but you feel it as a loss nevertheless.
It has never seemed prudent to me to ponder all the things that my son has lost, never been able to do, to experience. It strikes me that  essentially his existence, hollowed out, truncated in the extreme, has characteristics similar to a person whose life has been cut short. Every moment is complete, perfect, unless we choose to perceive it as missing something, except that we cannot choose our heart.

March 20, 2013

And so it goes

It seems logical to me that in the beginning most parents struggle to understand what has happened to their child since knowing what has caused it opens the possibility that something can be done about it.
With few exceptions that I can think of, the knowledge though usually comes too late to do any good. Certainly defects, caught in time and corrected, can greatly increase the quality of life and often its length.
In Segev's case, the deficits he was born with are both myriad and profound. Born as he was with severe brain damage, that occurred while developing in utero, his body was in essence, programmed to self destruct. His kyphosis, as seen here, has a major impact on his health, particularly his lungs. Several aspects of his autonomic nervous system are damaged allowing, for example, reflux (regurgitation) to occur and which led eventually to permanent lung damage. Some of the insults to his body have been acquired, such as the apparent damage to his phrenic nerve from the implantation of a VNS device to try and combat his permanent array of seizures, which led to paralysis of his diaphragm and subsequent lung collapse, accelerating his deterioration.

March 14, 2013

The river bed

The recent post from Harold, who ended up in hospital and asked if perhaps after all he isn't invincible naturally brought up many thoughts about my own health and my experience with hospitals regarding Segev.
My experience has been nearly wholly negative all these years, both on the personal front and with Segev. I have said before both here and in private conversation that the circumstances that would see me once again taking Segev to hospital are nearly non-existent.

March 08, 2013


When Segev was born and it began to be clear that something was terribly wrong with him the advice that we were given by physicians was, "make another baby, because there's no point in investing in this one."
I often wonder why I have such a difficult time seeing the concrete evidence of all these years of effort in fighting for my son, despite it being right in front of my eyes.
No one can say that I haven't lived in the moment of appreciation; I stood, drinking in every second in voracious gulps that only left me more thirsty. A consumption born of worry.
I proclaimed The Message, like some kind of evangelist, of what love means in the face of destitute hardship, ill health and transparent confusion, standing empty handed for years as I never stopped extending my hand in the hope for assistance.
And where there ought to be unrestrained exultation, tomorrow being Segev's 15th birthday, there is the realization that palliative love is also love.

The joy of holding him has been replaced with a quiet murmur of contentment as his heart continues beating, holding my tears in limbo with less of  'when?' and more of  'it's OK'.
His smiles fade and I punish myself, by looking at older pictures that do not reminisce, but taunt.

I realize that as he winds down I am letting myself believe there is little else; this self pity.
It will not do. He has brought awe into my life and I cannot forsake the strength of that connection.
It feels better, now, to have said these things, brought them out of the recesses of an isolated mind and be done with them. There is still time. Tomorrow, balloon's are in order.

as promised

February 05, 2013

move along

Segev's bed is and always has been in my bedroom. His multiple cases of central apnea while sleeping, seizures during the night, disquiet, pain, the need to be turned, the danger of choking on his vomit, the endless suctioning, result in a haphazard slumber that on average sees sixty minutes of continuous sleep. All conditions which demand extreme vigilance and equal measure of timely reaction.
And that is when he is 'healthy'. Now, a month after finishing his most severe case of pneumonia to date, he is his old steady changing-by-the-hour self. The episodes of central apnea, always sporadic and unpredictable have petered out; the last having been about a year ago and before that, even longer. His seizures, which were disconcertingly strong and many since I reduced one medication due to side effects, has stabilized. By that I mean that his most severe fits have retreated back to their labyrinthine lair, leaving an advancing and enlarged army of medium seizures to ward off that elusive enemy, peace and tranquility.

But while there is less to tell about continued, long sessions of physiotherapy at three O'clock in the morning (till five, six or seven) Segev suffering from pain has returned, vengeful: such as last night when I was able to put him to bed only close to 01:00 and by 01:30, just as I had fallen asleep, the screaming started. It has been quite some time since he screamed so harshly. There were three long, excruciating months last year from February to April that he screamed from pain. In continuing to look past my own experience those trying months brought me, after again trying all manner of treatment and sedation, to apply for medical cannabis for Segev (only authorized after the second request), do an endoscopic investigation of his stomach (the need to vent high pressure air from his stomach is off the charts), planning a CT scan (to investigate the three areas where his intestines burst in 2005, cancelled due to the overly massive amount of contrast dye they would need to inject into his fragile veins) and half a dozen doctor consults with endless bureaucratic nonsense when asking for coverage for those meetings and tests. Last but not least, days of missed work. That tends to make me especially agitated since I only have two days of work a week, seeing as my 'real work', my true work, that of taking care of Segev, remains without any form of monetary recognition. 

Segev's screams are unnerving to me because of several reasons. I can't stand to see him suffer is certainly the main one. Then comes the fact that being fatigued chronically makes the whole thing , at one O'clock in the morning after a full day of attending to him and only attending to him, especially difficult. There are so many things to check and treat. He was throwing his left elbow into the air forcefully. As a result the dislocated shoulder joint was sequestered so sturdily against his clavicle that I had little success in realigning it. When I finally did, it had no effect on the screaming so, frustrated, I moved on to his stomach and began manipulating the intestines by rocking and squeezing while simultaneously vibrating my hand in order to release pressure there. No luck. Next I pressed on near his neck, at the phrenic nerve where the adhesions and tightness have raised the muscles to a string and lump like mound that when treated allows Segev to relax significantly. All the while trying to hold down his left elbow and prevent the continued addition of that discomfort and talking to Segev trying to calm him down.
He actually did quiet down, several times, and I waited another minute in order to see that he was able to give in to his considerable fatigue. I settled into bed, the cat eagerly jumped back up despite having been unceremoniously cast overboard several times already.  Not one minute passed and Segev again began screaming. Each time I tried a different, known, area of discomfort. His hip has been especially bothersome these last few weeks and so I tried to return the head of the femur to its housing, the acetabulum. Although there was crunching in the joint when I bent his leg forcibly, since there is no chance of Segev cooperating, the joint's rotation has become very limited, elicitating the sound of gravel even when he is relaxed. Applying pressure to the joint brought out several dulled clicks which appeared to calm him down.

Back into bed after singing Segev's lullaby for the third or fourth time, cat jumps up, covers drawn and I fell asleep again in a matter of seconds.
So we go through the cycle again and finally at 02.45, all is quiet. After that we both slept for nearly two hours in uninterrupted fashion until he began his nightly occurrences of coughing and choking which require suctioning. Each time, I jump out of bed but not always equally successfully. Sometimes my feet get caught in the bed linen, especially the blanket and several precious seconds are spent flailing in order to extricate myself. Sometimes the cat jumps off of the bed, sometimes he gets thrown by my Olympic-style bounds, his air-born trajectory of no relevance to me since cats always land on their feet.
I feel a heavy ache in my neck and head, purely from fatigue and on more than one occasion the room sways unsteadily as I try to get my sea legs in as short a time as possible. 

Now, nearly a day later, he has only had pain on one occasion, for a short period. Segev's breathing is raspy, bubbling with saliva and phlegm but his need for oxygen is a mere two and a half liters. He is happy when I talk to him, hold his hand and make certain he understands that Babbu the baboon is a wild and crazy animal, Tiggy the tiger as usual wants to eat his nose and Froggy, his favorite, well froggy is perched as always just to his left. When I take Segev out of his wheelchair, just for a moment, or for some physiotherapy or even just to change his nappy, he becomes even more animated. His excitement though often has its limits and there is no doubt that his semi-conscious stupor is this fortnight's master.

Nights like the one described, minus the screaming from pain, are common and wearing, immutable even, just barely tolerable because at least they are not fraught with the real dangers that accompany his severe chest infections. The pain though, is an element which buckles your knees and makes you question if you have what it takes. 

So after a total of no more than four hours sleep I've been able to drag myself through the day, making use of a rare few hours that my daughter is home for her to sit with her brother, between the two of us we keep a full watch over Segev and see that his schedule is kept, and I can continue sifting, sorting and ultimately packaging the household since we, for the first time in over fifteen years, will be moving to a new abode.
After three years of daily searches I found by chance a small (55sq. m or about 550 sq ft) apartment at ground level. While congratulations have been forthcoming due to the opportunity to move to a place that is not literally falling apart, with flames coming out of ancient electrical sockets, windows, paper thin, spontaneously falling out of their frame, rats freely roaming the balcony, window sills, shutter boxes and attic all the while screeching maniacally, it's not that nor the severe cold of the house in winter that I will miss, nor the on again off again water boiler, heating and plumbing. More than the dinginess, the peeling paint, the extreme amounts of dust or the leaking toilets I will miss the two flights of stairs which I have been carrying Segev and Segev's wheelchair up and down, for over fifteen years. 

The new place, while half the size of the current one, is considerably more expensive. Possibly, if I hadn't injured my back again last month lifting Segev's wheelchair into the van, and still not fully recovered from,I might have passed on this opportunity to move. I had, after three years' searching, just a week prior, resigned myself to the notion that apparently I would never leave this dungeon, this pantheon of grime.
It is strange because the notice of the new place came through the village's 'google group', just one more email, similar to the ones that daily bombard my mailbox with notices of one person's indignation over their neighbors' tree protruding over their property or the lack of cleanliness of the sidewalk, those kind, that perfunctorily get deleted. This time just as I was about to delete the message, sight unseen, a little voice said, "have a look at it", and within 15 minutes I was at the apartment talking to the owners.

As I have said, the new place is tiny and will present its own challenges, also vis a vis the kids, but I am concentrating on the goodness of a change of scenery, cleanliness, convenience, in short I am hoping that this is a return of the courage of old, perhaps wiser, since, and make no mistake about it, this move, besides being an enormous (nearly entirely solo) exercise in will power and physical endurance, and where nothing, absolutely nothing with Segev is simple, not changing his diaper nor suctioning,  a tube or wire inevitably wrapped around his hand or impeding access to whatever you need most at that precise moment, this is never the less still exchanging my safe, comforting routines with Segev for something...different, and that scares the shit out of me.

February 03, 2013


The beauty of these pictures for me is firstly that my daughter took all of them and that I can see how, by example and nature, she has developed as a person, now 18 years old, ready to change the world as we always are at that age, growing up here in the village with extensive exposure to nature. To see how she is taking steps to become more involved in cultivating this connection she feels, with a year's volunteer work in a nature preserve in the desert after her matriculation exams.
So despite the difficulties of being a father to a girl who is suddenly 'all grown up', while being so focused on her little brother Segev; despite the misunderstandings and emotions of the teenage years, despite the fear of my own shortcomings and the dysfunction which once in a while seems to spark a discordant tone in our already chaotic family life, I am made proud to see her interest in photography continue. And strangely, this pride makes me hopeful. I don't know whether it is the sentiment of youthful energy directed in a positive way, which inevitably drives our future, or that some change has overcome me and I am once again beginning to see a return of the joy in little things, as once I was enamored of photography and nature long ago, and a feeling that these photographs are somehow connected to my future.

Noa Fischer
lightly filtered


Pere fighting with leaves

January 19, 2013

still life

Maneuvering Segev into the bathroom for his shower (the bathtub is defunct) is fraught with danger. The door entrance is narrow and getting in requires coordination and a little bit of luck, since at any given moment Segev can have a seizure and begin flailing his arms about. His massive kyphosis requires holding him in a certain position for stability as well as not to put pressure on the neck as your hand tends to slip up his rounded back.
It is best when there is an extra pair of hands to assist but the built-in shower walls will only allow one person access to Segev at a time. Strangely this always makes me think of Samson in the narrow passage warding of the hordes with the jawbone of an ass. The side supports of his shower chair are more like two little bumps to irritate him rather than actually give support and with his random and uneconomical movements a large velcro strap is used to 'secure' him.
The water of the shower, coming from a hand held nozzle would completely flood the bathroom if I didn't put a laundry tub partly under the chair for his feet to dangle in. I drilled two holes in the bottom for drainage.
Preheating the bathroom is necessary as it is 10 C in there without. I cannot undress him in the livingroom and then bring him because if he is properly covered I won't be able to put him in the chair and extricate him from the towel. Besides, his suction has to come as well and carrying the suction pump on my shoulder would not allow us to enter through the door. So I wheel him into the hallway, which is just wide enough to take his wheelchair through, but has ninety degree turns which necessitate lifting his chair at the back because the small wheels won't give enough pivot. There I will undress him as quickly as possible, as he sits in the chair. I have the option of turning on the water first, in order to warm up the chair for him, although there is no place to put the shower head except to wedge it in one of the official retaining straps, which is made of a material similar to that used in the space shuttle, able to withstand the effect of aging that otherwise would have a chance of lowering its degree of abrasiveness to a level allowing actual use.
But the water temperature constantly fluctuates as the cold water is stuck in a continual cycle of ebb and flow, fighting a vicarious battle against 60 year old plumbing. This means that by the time I actually lift Segev out of his chair the temperature can either be scalding hot or unreasonably cold. Therefore I usually forgo this and put him on the cold chair, tie him in, all the while guaranteeing him that he will be warm in just a moment, and then start playing the water ballet, hoping in the interim Segev doesn't cough, requiring suction, or have a seizure. The latter results in him hitting his arms against the marble walls of the small shower stall.

Now comes the part of why I created this entry; the shower itself does something for Segev in a very positive way, surpisingly so because nothing else even comes close to this.
You see, Segev's neck is in dire straits on a permanent basis. On the right side it is wholly rigid because his massive scoliosis pulls to that side. His shoulder, the area actually between his shoulder and his ear, is hard and set up high from the internal pressures of his derelict physique, where his intestines are in his chest and his heart has been pushed over to the right side of his body, amongst other things. 
On the left side of his neck resides damage accrued from surgery he had to implant a VNS device. Perpetually swollen and sensitive, with rigid lines of hardened tissue and darkened veins protruding increasingly.
I use the lubricating aspect of the water and soap on his skin to provide a caressing massage to mostly his legs, arms and shoulders with good effect. Not so long ago I began to experiment with using different streams of water to apply a long, gentle massage to his neck and was simply stunned by the effect.
After several minutes of the localized barrage of water Segev becomes visibly relaxed. His jaw recedes less, his breathing is clearly less labored. Lines of tension on his forehead from recurrent physical discomfort melt away, and the expression in his eyes, that of a newly discovered wonder, with a look of complete relaxed and smiling contentment washes over his face. 
Watching him I can feel my chest begin to relax and it is only because it strikes me as a bit absurd, that I am able to hold back tears of joy.
After twenty minutes of this, Segev's schedule calls me to finish, as well the awkward sitting position I take up beside him, pressing on my back. Then, replete with wet sleeves and soaked shoes I begin the not-so-slight undertaking of extricating him from the chair without hitting his head against the protruding second wall, into a towel on my lap, while sitting on the commode next to the shower. From there it is a slippery few seconds to wrangle him back out through the door and into his chair.
Difficult and tiring, yes. Worth every bit of effort for the reward of his temporal serenity? Yes and again yes.

January 17, 2013

Ho hum morning

There is quite a bit written on these pages about what a person like my son Segev means in context of our humanity. Most discussions about disability, especially catastrophic disability revolves around the compromised person's humanity. As though there can be such a question. Obviously, in my mind there can be none. The question for me is only the humanity we see when other people talk about, or try to relate to severely disabled individuals. I'm putting it nicely, since what is mostly happening is that people try to relegate disabled, not understand them. People, even lauded professor's, even ones employed by Princeton university, try to argue that they have no humanity. It is more than tedious to me that I actually feel the need to give rebuttal's, here on the blog, to such nincompoops. We shouldn't even have to talk about these issues and learn a thing or two about respect, but we do have to and the journey portrayed here, of Segev, represents a story that, while unspoken by most parents, finds its echo in multitudes of homes across the globe. These children have no voice of their own and we try to give them a voice. In telling their story, naturally a good part is taken up by speaking about how it affects us, the extreme caregiver. 
Perhaps if there were more understanding about the requirements for providing such care, our lives would be a little easier.

This morning I took Segev (together with his mother since it is not possible to travel alone with Segev) to the clinic for bloodwork. His albumin was low in a previous test and he was bruising much too easily; a sign that the valproic acid he takes was adversely affecting him. The conundrum is that together with his other anit-epileptic medication (Lamotrigine, a successful but dangerous combination) his massive seizures were well controlled and he suffers only small to medium ones. As a result of the drop in Albumin (important in maintaining tissue integrity, such as blood vessels) I had to reduce the valproic acid. The expected happened and Segev recently began having many major seizures. Frothing at the mouth, turning blue, all that. I'm not certain yet how I will resolve this.

Blood tests can be done only until 10.00, after which they are sent off. Segev's morning routine is intense with much to do and must necessarily be interrupted in order to transport him to the clinic. In home service to draw blood is not an option since it is sub-contracted to a private company which sends any-old blood technician, whereas few specialists are actually successful in drawing blood from Segev's incredibly fragile veins. 

Loading his wheelchair, getting him safely and comfortably settled into the car with his oxygen, suction and O2 meter, with the ever present danger of him vomiting during any stage of the transfer, makes for constant tension. Getting to the clinic in time, adds to this. He is with his mother this particular morning and when I arrived the first complication manifested itself: he wasn't breathing well at all. His oxygen dipped to 85% while on three liters. It took me some time to open his left lung and have him clear enough phlegm so that it bounced back high enough to consider taking him. Food has to be taken with us because his meal is a two hour affair. Despite having gotten his inhalation/nebulizer therapy his breathing was very raspy and his hands were twitching continually, indicating an exacerbation of his bronchiectasis (or a return of the pneumonnia he had for three weeks) was underway. I had to decide whether to continue with the planned trip to clinic or scuttle and start more intensive physio and extra nebulizer therapy. 

Since there were several issues to discuss with the physician and the next opportunity would be three days later I opted to go ahead. There was no time for the cannabis inhalation  and so with his level at 93%, we left.

Because the only timeslot available was later toward the end of the doctor's shift I had to wait for an opportunity in between patients to go in and tell her we were there for the blood test (which she has to perform, the blood technicians won't touch Segev). As always she would then prepare the referral and continue to see some of the children in the overflowing waiting room while the lab prepared needles, swabs and labeled test tubes. Segev's oxygen continued to dip and I continued to work on his chest with compressions, letting him sip water to try and get him to cough and reposition his jaw and neck to clear his airway. He needed to get his next bolus of food but it was impossible to know when the physician would come out to take blood and if his stomach is full, the screaming and body contortions can be a recipe for inciting vomiting, so I postponed his food. He was listless and agitated at the same time and now the oxygen started running low. The wait was long, but probably more so due to my irritation with being in an environment where I could not simply put him on his side on the couch and continue his treatment as needed. Once his schedule gets behind, the whole day and evening is spent trying to catch up since medications, food, therapy, bowel hygiene and so much more all has a time when it needs to be done. Thus the days often end at 01.00 or 02.00 in the morning, continues with treatment, turning and suctioning through the night and then, at the latest, starts again at 08.00 with medications and so on.
The blood draw went better than usual although it was apparent that one of the veins in his wrist, always a favorite for this procedure, had had its day and was now officially retired.
The oxygen finished and still I had to speak to the physician about an interim report to the health ministry on his use of the cannabis, fill prescriptions in the pharmacy and discuss authorization of the upcoming elective hospital stay with the office. Supplies had not yet been delivered but the urgency of getting Segev back home takes precedent and so after waiting a bit longer, we left.
Before putting Segev back into the van I had to again work on his chest in order to open the lung as well as cause him to cough and thankfully, as it is right on the street, there was little traffic to add to the cacophony of noise coming from his cough, my cursing the oxygen alarm, people talking and the chirping of the van warning me of an impending alarm going off if I didn't press the code soon.

Finally back at his mother's I fired off the list of things he needed to have done immediately: oxygen reinstated, inhalation therapy with 23% saline, vaseline on his dried lips, water in his mouth to cough, prepare cannabis inhalation, finish his food, eucalyptus on his chest and back, administer 10 drops homeopathy for the phlegm, heating the water bottle to warm his legs and feet.
Except for the food and eucalyptus I did all the rest and needed also to double check the oxygen condenser because his level was not rising and equipment failure has happened before. While checking the machine I could see that there were black spots of fungus in the tube. More physio therapy, together with the inhalation and finally he reached 95% on 3 liters.
Now I was ready to go home and eat some breakfast and receive a call from the social worker to the affect that she was going to try get some help for us (a conversation that has been ongoing for two years). The fact that I have tried to get help for fifteen years, without success, does not allow me to feel any particular jubilation in light of this latest attempt. Government officials have been personally contacted, high up and even highest up, without concrete results.
So the recognition of needs my son has, which I am having increasing difficulty meeting, appear just as far off as always.

But that, my friends, is a story for another time.

January 11, 2013

Where is D'artagnan?

Wariness in posting on this blog has taken several different forms over the years as my understanding of internet etiquette (yes there is such a thing, despite that the internet seems to remove all boundaries, for some) and my son's place on this earth has progressed.
There are often personal issues which I would love to delve into as they form a connecting piece of this complicated life. Few ever make publication. Since my writing is entirely spontaneous, often a reaction to something I've seen or read and, of course, experienced but never the less, 'off the cuff', I have to be careful not to get carried away and I admit that on many occasions I am unsure as to what should be included and what shouldn't. Quite a few of the readers here are also writers and so you know what I am speaking about.
Still, to me openness is strength and by strength I mean, open communication, transparency, strengthens our understanding of the connections we make with others, helps us to question our way of thinking and increases our awareness and thus ability to humanize that 'other'.
But now there is a sort of problem, one that I've spoken of extensively over the years, that being the inevitable wear and tear of this kind of intense life, battling for understanding about my son's condition, battling for his life. 
While I actually am not fond of the poem, Do not go gentle into that good night, the oft quoted, rage, rage against the dying of the light, has certainly been my battle cry all these years. Soon to be fifteen. Segev will be fifteen in March and his resilience, above and beyond what I have seen in my life, should be a continued, enormous encouragement. To maintain the girding of loins, gnashing of teeth, rending of cloth that, invited or not, has seen us bleed.

There is as many of you know, that slight balance where we endeavor to create a positive experience from the hardship; fighting the battles but also relenting to quiet and tender exaltation of the beautiful human beings in our care. Finding myself, instead, teetering between these two. As extreme the depth of volition, so too the feeling of a bond destined to be severed. 

Now, while knowing a thing or two about care, the time has come to understand why it is that anger has resurfaced, leaving me perplexed. Some feel there is no need to question this anger in the face of relentless fatigue, pathological lack of sleep and an endeavor which takes, in equal measure to what it gives.
I understand now why it is that I am angry just as I have come to understand the inevitability of that anger. I will write about this differently later. 

Now, when I make a bank transfer to pay my rent as I have often done and discover a week later that there is no record of such transaction, I need to be aware of how my functioning is no longer reliable. Perhaps it is just a glitch in the internet, right? Actually on too many occasions these glitches occur. Too often I find that I cannot concentrate on what is being said to me. My face sometimes twitches when I speak because emotions are bubbling under the surface and continuing to speak is the only thing that will stop them from breaking barriers that are there for good reason. 
This is not a case of , 'have a good cry' and you'll feel better, get it out and it's done with. It goes deeper. Reading is a chore for me. One paragraph at a time is the best I can manage. This from a person who used to read a page once and be able to reconstruct literally most of it by heart.
That's all fine, I accept this bit of wear and tear; there is no gnashing of teeth over this at all. But it makes me unreliable. It means that I can no longer provide what is most important to me; the ability to do what I say that I will do.
You're only human, some will say. Yes, true. Unreliable just like so many. No longer can I feel superior to others that what I say, I can always back up. Now, I just keep quiet. Raw emotion doesn't cut it anymore. Now maturity must be called upon and that is an enormous adjustment to make. Because that maturity is realizing that, despite the unfathomable resilience of my son, reality is a bleak and weary affair that has me teetering on the brink of cynicism. And that is just plain awful.
Then there is a reprieve, as now with the improvement in Segev's health, confounding anyone's expectations. With it does not come jubilation, as has always been the case. This is a time for reflection. To understand the anger. To allow the body, unwell for longer and longer periods, to rally.

I'll leave you with a piece that will not be included in the upcoming second edition of Little Job's book of broken poems:

There is a song about the taste of a favorite sweet wine having fled my lips.
Where friendship is a bond for all time and circumstance.
It is true what they say that one can lose in a day
that which took a lifetime to build.
My favorite cigar no longer embers on my palate 
and no special night shines
with the din of table laughter.
When pastimes are all the frivolities, forlorn and forsaken.
But friends quell the shallowness of my heart.
Bring the music of your voices and 
the mercy of your opinions.
Bread is on the table.
Butter is on the table.
Let me hold your place at the gathering and hewn silk, spun
from experience and laced with wisdom
will decorate our feast.
Where is the taste of no sorrow
with a moment of now, like the dash of your fermented spice?

©2013 Eric Fischer All rights reserved. No unauthorized use or transmission.

January 07, 2013

As I live and breathe

So much is going on, plans, needs, machines breaking down, bills to pay, fatigue and aches but, "As I live and breathe", takes on a whole new dimension since Segev is improving beyond my craziest expectations. And that's all that really matters at the moment...

Early morning winter 
Pere is surprised by the sudden sunshine
Segev is enjoying morning medicinal inhalation(begone pneumonia!)
So that's where the sun was hiding

January 04, 2013

without any doubt

I'm very angry. "At what?" you might ask. Nothing. Everything. "Oh, that kind of angry." *frowns*

But I did write this:

Fare strong and thee well

Less quiet than not I sip the sand
as I tumble, pressed by an unseen hand.

The stars’ gaze, unseen ways,
forgotten paths, barely surpass
the flow of ebb
what the Creator has.

My sorrow is seen and trotted about,
amid laughter aglean without any doubt.

A vessel of birth sliding creaking its birch.
That man made abode absconds life’s golden perch.

My dear friend how can I find what’s never been found?
When you will speak the words without sound.

All the end that we must see,
without catching a glimpse of who we must be.

Fare strong and thee well,
truth found, on bright ocean quell.

©2013 Eric Fischer All rights reserved. No unauthorized use or transmission.