April 29, 2011

What to call this?

The benefit of repeated showering in a shit storm is that in the end you gleefully state, Oh! look, it's raining.

I honestly don't understand what has happened that the cries of pain of my son, the one's that respond only vaguely to an arsenal of physical treatment, herbal preparations and pharmacological elixers, can twist my brain so much.

The dogged clinging to the belief that I can make a difference has lost its choke hold on me. Paradoxically I no longer have the ability I once had to resist his suffering. In order to attend to his stricken state with a dose of calm and steadfast purpose.
Now I falter, I feel my own gut twisting inside of me. I am frustrated no end while accepting the matter as a natural course, and am furious with myself for discovering this so sought-after balanced state of mind. 'Rage, rage against the dying of the light' and all that.

Is it possible to come full circle in a thought process as we would hope to? I know I am not filled again with the same sense of outraged purpose that I started with because now I feel just the opposite, quite useless, as if I am going through the motions, as a defense against the fear of losing him. A fear which I never felt before though in the past I had every sound reason to live that fear of his loss.

Fear has gripped me, I think. Perhaps even the fear that this situation will go on for more years and now, with full understanding of his condition, knowing that my strength is not what it once was.

It definitely started in the last hospital stay where the system beat me. Yes, it did. Because they wouldn't listen to me in time. Eventually they enacted the procedures that I put forward but with such delay, so that Segev suffered terribly.

Entire days of vomiting gained from their ignorance. Status epilepticus prolonged for days, to further poison the well. Gastro enteritis and viral pneumonia from lack of forethought thrown in for good measure.

I know that rarely we are able to realize that we are not what we once were. So my realisation should be a blessing. I attempt to instigate compensation and now rely fully on my children to assist.
People Issues which are very relevant to my son's care, characterized by their negative impact and always known to be out of my control, no longer receive even the rebuttal of redundant protestations, explanations, exasperation.

This fait d'accompli I've been served is a bitter, slimy dish.

And then...the pain stops. It fades due to treatment or providence or both. But those darkest moments, that lighten in the nick of time, appear with less pause, more greedily with each episode.

But I've been down this road before. A hundred times. So why should this affect me differently?

April 27, 2011

Generally speaking

Do we really need to have a post on the general state of suffering that human existance encompasses? Because that's what seems to be the gist of what we want to convey, along with the beauty, when we aren't suffering, the special moments, the kindness and the quiet, when we aren't suffering.
Suffering is of course, in the synapses of the sufferer. A kind of Ipsum Ictus (pardon my pidgin latin).

My life is a rollercoaster ride where I seem tossed around, experiencing the terrifying moments of Segev in a worse than usual condition, as is the case for the last three days, where screams from pain would long have had social services around if the screams were not understood to be that of a child with such severe complications in living, that it puts my own, not insignificant wear and tear, to shame.

Hours of screaming that no one and nothing seems to help. Certainly there is a fugue, analgesic drugs, orthopedic manipulation, massage, medication. Existentialism.
Each temporary respite being reincarnated as another bout of circque de soleil body contortions of pain.

Medications that he takes that help but could just as easily be the cause of a problem.
Medication to change the urine ph. Perhaps he has developed a kidney stone and is trying to pass it? The ultrasound was negative but ultrasound is notoriously innaccurate and the stone could have been too small. Yet he doesn't actuallly scream when he urinates. The downside here is that the pottassium citrate can cause severe irritation of the intestinal mucosa.

Medication to alter the ph of his stomach because his constant reflux/vomiting is eating away at his throat and the leaking gastrostomy hole, but whose main side effect is gastrointestinal discomfort.

The ketogenic diet whose main side effect is vomiting and exactly one year ago I stopped that medical diet for two months because of the exact symptoms Segev is having now, only to have to start it again after two months due to massive increase in his seizures. So I am again pausing the diet, to let things calm down, if his diarrhea, non-stop vomiting and intestinal dysfunction are in any way connected to it.

It's a goddamn mess and yes I find myself, even I, muttering in my head, 'why, goddamn it, why!?'
I don't expect and don't need an answer. There is no answer which will change the pain, both his and mine. Mine from tasking my body beyond its limits in order to care for him and mine for worrying.
I try to take an existential viewpoint; it's all just an ebb and flow of energy, one situation not being intrinsically worth more than another. I seek validation of this point of view but it strikes me as trivial and lacking any feeling. Feeling is telling me, 'this is life!', take the good with the bad, Eric.

Let's see, I've calmed down a bit, at least in my mind, and will make a compromise. I do what I can. I seek out help, research possible solutions, approaching for example the chief pediatric gastroenterologist with the idea to do an endoscopic investigation in Segev's stomach through the already existing hole, thus bypassing the need for general anaesthesia. A good natured frown and a 'no, no, no' was the response.

Segev's nissen-fundoplication released some time ago but may yet be implicated in the vomiting crises that began in earnest in january but the only solution there is to redo the surgery. When I spoke to the surgeon about it and said, 'but, we can't do that surgery again', his face darkened and a slow side to side of his head was the answer.

I'm not even concerned with Segev's new seizure, hardly concerned with the consequences of stopping the ketogenic diet, but am concerned with this appalling feeling of darkness when it comes to relieving his suffering, eventhough I know that, if there is more to be done, I haven't been able to discover it yet.

 If parents understand themselves to be in a position of pain and suffering, then they might elect to give up on a disabled child.  If, on the other hand, they are inspired by their child, whatever his or her condition, they will work to find the greatest happiness in the circumstances.

April 23, 2011


To me this is the stuff of legends: a family goes back to China to revisit stemcell therapy for their daughter who has an incurable, fatal disease. Stemcell therapy is in its infancy stage but this family has already seen positive effects on their daughter. They are not selling anything, trying to convince others to put up money or follow in their footsteps. These are intelligent people who understand they are prolonging the inevitable. There are no unrealistic goals or hoping for a miracle. They are trying. The fact is, and this is not a comment on those that don't, but they are trailblazing and the fact is that others will benefit from their journey, even if theirs turns out to be a failure. We all gain from this knowledge through their sharing of their adventure.

You can read about the journey, starting here


April 16, 2011


                                     ©2011 Eric Fischer
When there are such mornings, scarce as they may be, that I can take Segev out to the landing to enjoy the morning air, with little interruption in the form of choking or other unpleasantries, it is worth a picture.

  One of two times in the last year that I could sit with Segev in the garden (also finally cleaned up so worth the visit!)  His brother watched him as I prepared his ketogenic meal upstairs, the temperatrue around 30°C. His good breathing held up for about an hour and a half and then we needed to move back upstairs for inhalation therapy.  

April 14, 2011


I have a patient who worked in high tech since it began but now works in the diamond industry and he suggests that Gold is no longer the anchor of world economy it once was and that diamonds are the de facto stabilizing currency since it is government controlled. I have heard that bat shit is also a commodity, but that may just be an ugly rumor. If not, the windows of my car are worth a small fortune since I last washed it.

Change should be a commodity, then I would be a wealthy man. Considering a one year minimum, I have counted 19 residences as home in my 45 years. 
About two years ago I hit a cognitive low point in my life. The accumulation of fatigue brought me to a state wherein my memory was shot, I had difficulty focusing, days blended one into another and I had little cognizance  of was transpiring around me.
One year ago I hit a physical low when my mother, at her last opportunity to do so, came to stay with me so that I could care for her (and Segev). 
This January and February, with the hospitalization of Segev, I hit my lowest emotional point in my life, where, as an adult, I realized how I was slowly self-destructing as a human being, despite helping or trying to help, no, because I was helping or trying to help, everything that moved.

But things have settled since then. The crises have passed (oh, have they really, Eric?).

There is a woman who comes once a week to help with Segev, for about four hours. She was sent by an employment agency as someone who has experience dealing with physically compromised children. The extent of her experience is that she acted as part time chauffeur for two children with CP to supplement her income as a trained accountant. No, i'm not kidding. The health insurance sent out a tender to all the employment agencies in the area and whomever could supply the appropriate personnel would win out. And this was the result.

She is intelligent and picks up on small, very relevant details, is caring and willing to learn. But she can't lift Segev, hold him, treat him, perform suction, feed him, cut his nails, massage his stomach, readjust his position or basically anything else connected to attending to Segev. But she is a nice person and as I already stated, quite intelligent.  but now I fully understand what Claire means when she speaks of an 'energy vampire'.

And then, quite out of the blue she said, "when Segev is gone, you'll fall to pieces."

I can accept a statement like that. It doesn't shock me in one bit. Somehow, a person like myself is not even surprised she said it, which might seem strange but since I wasn't shocked it stands to reason that somehow my person attracted the statement.
But there it was, this statement.  I believe it may have been made out of sympathy and that she saw me on a particularly tiring day (Vampires anyone?).

As it did happen I think it should be stated, although there are many things that happen to me and Segev that I would like to discuss, to share with you all here, but I don't, out of respect for my children, who occasionally read this blog and for the sake of (at least a temporary sense of ) decency.  
But I won't fall apart. That was my response to her and it was not a protective reflex. I've thought long and hard for a very long time, under many different circumstances, about what will happen if, a very real possibility due to the average course of nature, I outlive my son. 

Nothing. That is to say, I doubt any new meaning will be given to the sum of my experience in attending to the needs of my son and I know exactly what my function is as his caregiver and that it will end one day.
I feel i have learned his true nature. Cracked the mystery so to speak. Living day to day with the knowledge that today may be the day I begin life without Segev, for thirteen years, has not made me laconic nor lazy. Not diminished my resolve to care for him, nor lessened my love. But it has increased my understanding of the value of life, something which I cannot possibly take for granted anymore. This is at the same moment both a profoundly sad realization and an enormously satisfying one. I've known for a very long time that, barring sudden tragedy, I will have a very long time to mourn. Years. So be it.

And perhaps it is fair to say that therefore I live each day with a, sometimes rather uncomfortable, intensity. But as I wrote previously, even there, a new calm has overcome me. And I have never felt fear of losing Segev, strange even more so.

We are always concerned with the future. We always look to the future for better things. But I feel that, if you're not OK with today, how will you ever be OK with tomorrow?

April 12, 2011


This morning

How many words are needed here, when the title already encompasses the very thing which makes me both proud and humble. His resilience, even today, yet again, that yesterday was a day not only of vomiting and complaining but where for the duration of the day I had to physically hold my son's mouth closed so that he could breath.

His resilience is such that every possible opportunity he resets with a glimpse of contentment, a quiet moment in my arms. Assaulted continually from within, he takes a moment, or a day, to catch his breath and manages to rebound. I do my best to keep up with him, trailing behind mostly when attending to his many needs, laced with episodes of pain and detriment, that accost Segev and merrily but vainly try to impose their constraint on rare moments of serenity. 
Those moments are a bastion, a reservoir of good intent, islands of sanity which seem to sustain me and so I savor them to the last molecule.

His breathing is better but the better part of today he is uncomfortable, coughing, subsequent choking episodes and many close calls of vomiting. 
His jaw recedes, barely responding even to the support of my hand, making his bath a particularly gnarly affair, cut short at the part where I always massage his neck, shoulders and back, in an effort to stave some of the discomfort from the advancing kyphosis, whose beligerent pressing on his nerves has destabilized his left shoulder and now also his right shoulder is beginning to recede from its proper place in the socket.

Does he complain? Yes, but surely so much less than he should. And it doesn't matter why because sometimes the allotted time is short and thus the satisfaction of the moment is all the greater.

April 06, 2011

Of mice and men

It has been my privilege to treat patients for over the last twenty years in their homes. Nearly the entirety of my work has been done in the form of house calls. Observing a person's natural environment presents a more direct line to twists and turns that disrupts a person, be it emotional or physical, because they are eminently more relaxed at home, lacking some of the postures of defense normally put up in order to deal with the world.
We need defense mechanisms since our physical protection is rather limp and we have evolved into particularly sensitive creatures establishing complex emotion states and an amazing depth of perception. Without defenses our inner world becomes outside and the Zen concept of thought as action aside, there is a reason the two are not normally one and the same thing. 

There is no doubt that healing further exposes us and in order to be successful requires you to put your trust in the process. Still, most people exhibit reluctance to  look at their weaknesses, forsaking far-sighted goals of strengthening for fears at hand. 
By carefully exposing weaknesses you can make the base stronger, but people prefer to look to their strengths when things look shaky. Not so much with children, since they are less fixed in their outlook, adapting readily to massive changes in how they perceive reality. Not so much in individuals who have been so compromised in their manifestation that they really have no defense mechanisms and their weaknesses are paradoxically also their strengths.

At age six the lack of a law of cause and effect seemed to me some evil concoction stemming from a jealous deity, not content to give just reward for just behaviour and predicating suffering on people I knew, without cause. My inability to reconcile this modus vivendi  of the powers that be left me without understanding and thus easy prey for bullies who apparently had access to The Handbook of how things work in life.

Looking back at that childish world-view, now forty years later, in light of how I feel about Segev, I cannot but feel pride at such naiveté since it has helped carry me through the most difficult times in my life, having stood by me with fervent conviction, never allowing me to question if Segev was meant to be here or not and in this regard I suppose I simply forgot to grow up.

What is so amazing to me whenever I attend to Segev, whether it is for a need or to feel him in my arms, even until my legs fall asleep and the burning pain of fatigue in my arms comes dangerously close to affecting my ability to get up and place him on the couch or in his chair, I can always feel a tremendous energy coursing through his body. 

Like a star-filled night sky, endless days I've paid meticulous attention to his movements, his body language as well as his twitching and jerking, like unconscious attempts to metamorphose with superhuman strength into the shadow of some ultimate being. 
With his nearly entirely absent control of motion, his ultra limited ability to perceive and make sense of his surroundings, perhaps it is only natural that the concentrated expression of life would make such a deep impression on someone such as myself whose abilities to sense misalignment of a physical and emotional nature is at the very heart of my vocation.

Anyone can see this tremendous life force that Segev has and whether because of or despite his most extreme compromised existence, when something is perceived to endanger that lifeforce it occasionally makes for  very forceful reactions on my part. 

It is these forceful reactions which I've had to question as of late. It has an affect on everything since our realities are a function of perception and internal logic. I've written quite a bit about the need to be true to one's nature. And appropriately, getting to the heart of the matter in regards to Segev's being, his place in this world that is beyond what you could call "challenging" for him, it is crushing, like an insect underfoot. What we see in a child that is like a black hole of human need is indeed a doorway to something difficult to comprehend, by any person who does not peek through this black hole as a parent of such extreme children. Their distorted reality defies explanation. The play of cohesion and divisiveness does not appear to touch them.
I've written about the driving force in nature before, about the concept that allows you to place value on the connection we have to each other. One that cannot be marginalized by dry rhetoric masquerading as ethos and which does not side well with the concept that everything in our behaviour can be explained as electricity and biochemics. With most of nature hidden from our eyes, "imagination is more important than knowledge"  and I add, Love is a sustainable force when you believe in it. 

I've seen a lot of people write angry words, especially of late. Others lean towards a feeling of confusion. It seems as though more than ever we are looking to find our way because we are open to looking at experiences, dread limiting ourselves more than our truncated lives as caregivers already does.  This day to day, often hour to hour, existence gorges itself on our creativity, the luxury of carefree thinking and we are meant to strut through the streets in this tattered garment of our person, forever living in the vestibule of our abilities.

I've seen my relationships clearly defined of late, be it to my children, in regards to my beliefs, my expectations of life; my parents, my ex-partner. Lo and behold I am learning to let go of conceptions that are detrimental to my own mental health, of anger, as I wrote about previously and look to realign my insight more and more as I clearly focus on the things which are most important to me.

Here lies the crux when you have been battered on the rocks, thrown about in the storm, nearly drowned by hardship: to focus on the few elements really necessary. And when there is "no fat left to cut" it is about finding the right way to expend your energy, making the connections which will provide what you truly need.

April 04, 2011

October 1998

I wonder Segev, where you are. In what time and place. Irregardless of your cognitive abilities, you have inherited, through the collective unconscious, images that will spontaneously arise, perhaps to question or even to form your existence.

Life has so far betrayed you, not given you a fair and equal genesis. It shows how unbelievably fortunate we are, having a fairly whole mind and body with which to challenge life, instead of life challenging us.