December 28, 2011

Is the best yet to come?

Is it possible that we've seen the best of Segev? He will turn 14 in March. In the past I would never have let myself make pronouncements so far into the future where anything 'Segev' was concerned. After Owen, Jennifer's son, passed away I have been more fearful than ever. I bought her book, "No ordinary Boy", right when it came out because I wanted to support her and felt a kinship towards Owen, despite vast differences with my own son. His death is something I don't like to think about but do anyway out of respect for the enormous loss that his parents and brother suffered, all the more since it was quite unexpected.

Segev is different in that for so long his life has always been a terrifying question mark due to such a medically fragile body where serious lung infections have repeated ad infinitum, massive seizures and multiple episodes of status epilepticus push him close to the precipice and six or seven times he had spontaneous complete cessation of breathing. Burst intestines, difficulty breathing and a long list of dangerous medications help pad the list.
As a result Segev should be something like an old car battery being jump-started, springing suddenly into a staccato life, while I, with little more than catnaps throughout the night, watch for years on end.

A while back I met a friend through the blog, Phil Dzialo, who maintains two central points of view, both of which I disagreed with until very recently. One is that frustration with family and friends disappearing, not being there to help us in our little world of extreme parenting/caregiving. To me it is all very understandable since nothing in their lives has changed whereas our lives have been wrung out like ancient boulders that magically produce a few life giving drops. While we stand in awe and wonder at those marvelous drops, they can't understand nor are attracted to the notion of helping anymore than those who slow down to see the carnage of some horrific traffic accident. "Don't stare, children", even the words are the same.
But the second point which is a constant source of concern for Phil is that his son will outlive him. I wish Phil peace and longevity but it is true that his son Adam, as the product of his wife Sharon and his efforts to provide health and protection may be doing their job so well that Phil's concerns are forebodingly well founded.
"Life isn't short!" Phil often says. Well I have been living the last thirteen years as though life will end possibly within a few weeks, not rarely as though life could end within a few days and occasionally and with just cause, as though life could end within the next hour. Certainly each little disruption or even potential disruption of my son's health, be it accumulation of phlegm, pressure on his spine, a change in the nature of one of his seizures or changes in patterns of consciousness have been given very significant weight and have required enormous diligence to mitigate the dreaded cascading effect we can often see in such fragile human beings.

Several times I have said on this blog how Segev has changed since his hospitalization in January-February of 2011, where he had to contend with swine flue that led to status epilepticus that was improperly treated in hospital, catching gastroenteritis and finally severe viral pneumonia, all while in cyclical vomiting mode and living off of 5% dextrose for three weeks.
Since then he has suffered bouts of excruciating pain, disordered sleep patterns, the return of massive seizures from bygone days and the appearance of new seizures.
But most disturbing to me is his changed pattern of consciousness. His moments of awareness are fewer, more fleeting, predominantly and easily replaced by a stupor, his smiles fewer or simply not forthcoming. Secondly, now after a massive seizure that sees him turn blue despite oxygen his recovery doesn't take hours it takes days.
In some configuration or other I have seen these phenomena with my son before. To put it in dry academic terms, nearly fourteen years with Segev have provided a wealth of experiences and knowledge. But something has changed on a deeper level with him and I can honestly say with myself as well. My role has not changed.  As his father I am  certainly  responsible for Segev emotionally, as caregiver his needs for comfort and with a medical background, I strive to maintain his health. My motivation to fulfill this role has not changed. What has changed though is that now I have come to see our places in a somewhat different perspective, one that is much closer to Phil's "life isn't short".
There was a moment where I instinctively felt that this extreme awareness towards Segev's condition, having taken a physical toll on me, could no longer continue in the same fashion. Since I cannot change Segev's condition the only way to change anything is to change my attitude and while it isn't a smooth fit, I've decided, also after gaining impetus from a vision of sorts that I had in the same week, that a long term outlook is the only one which will give me the energy and sanity I need to continue.
This doesn't mean that I believe I made a mistake with the approach I've had until now but merely that the time for change is nigh. Whether the coincidence of Segev's continued altered state has a special meaning or not, I can't say.

In May of 2010 I invited my ailing mother to come and visit us in Israel because I knew that it would be the last opportunity for her to travel and she needed to be cared for, even if only for a short while, in a way which she could find with her son and grandchildren. She arrived a bit depressed, rather naturally I would say when you have been given the diagnosis of a fatal disease such as ALS, still  walking, though with difficulty and suffering quite a bit of pain. She left rejuvenated both physically and mentally despite that my energy and state of mind were at a low point due to the strain of caring for both her and Segev. For me it was also really a way to say goodbye while she was still herself, lively despite no longer having the ability to speak and still reasonably in control of her body.
Nevertheless over the last year I have continually thought about making a visit happen, to see her and see if one last time we can have that special spark between us which invariably has us laughing, perhaps she only on the inside as her paralyzed face is expressionless.
Each time that I seriously considered the rather momentous undertaking, which not only emotionally would be difficult but financially nearly impossible my plans, even on the eve of purchasing a ticket were always dashed by that overly familiar hand of Deus ex Machina, Segev. 

As a lifelong therapist I find it particularly difficult to come to terms with the fact that as far as easing suffering, I can do nothing more for my mother. It might seem logical then that a part of the desire to see her stems from a kind of guilt. To most people the need to see her would seem only natural, I'm certain, but my way of thinking, my way of doing all these years with Segev has changed me to the point where I would be wracked with guilt for going. 
Such a feeling begins in the mundane, with anything that involves casual, less meaningful activities.  Going to the movies, to the beach or even resting at home have all caused me to feel guilt since how can I allow myself enjoyment while my son lies and suffers. If only I were to spend a few more minutes massaging him, studying about neural cell migration under the influence of vipvisit one more physician or work a little harder lifting weights so as to hold him less precariously as I carry him flailing from a seizure up the stairs to the house. How can I justify to myself living in any normal way when everything has been taken from him and life is not to be taken for granted?

Well, in part I have this blog and the wonderful people I have been able to connect to through it, to thank for the answer to that question. It still feels to me as though I am walking on a crumbling precipice because true change is a very disturbing experience. Expressing myself here has allowed me to organize certain thoughts which otherwise would not have found a home. Listening to others' experiences also teaches me that one of the most destructive elements of this endeavor of parenting is isolation. Breaking that isolation only through words cannot begin to be enough. Actions, very much like Blogzilly's "mission: ipossible" seep into our lives and give confirmation that in isolation we achieve very little.
There exists an isolation which naturally comes from the condition we find ourselves in. At home, taking care of a chronically ill, severely mentally and physically compromised individual is a task few can manage because ultimately you must sacrifice a great deal of yourself to accomplish it. Certain people may be a better fit for this kind of life altering situation and each family's circumstances are different, making comparisons nearly useless for understanding  how best to deal with the hardship and isolation. But there is also an isolation which comes from ourselves. Whether it is a simple protective mechanism since we must conserve our energy and thus interactions, or slightly more disturbing, the negativity thrown our way, or more sinister, our own frustrations with a life that is brazenly at odds with what we understood life should be like, could be like as we formed our view of the 'normal' world.
For better or worse I hope I can,  coming as I am through my experience, from an other end,  make a change towards a less isolated view of myself, allowing new energies to come in and go out. An outlook that is sustainable in the long run, since what I have been doing is not.

Of course I can't forget my mother, despite the distance and rare communications, despite having felt that I was able to say goodbye to her as the person I have always known, not as the illness which encompasses not merely her appearance but smothers the very essence of her being - the ability and need to communicate. But in truth I don't believe in goodbye's. Never have. When you love someone deeply it is something which stays forever, I've seen this work over decades with different relationships, whether I wanted it or not.
The fact that my son's condition is not getting any better of course added monumentally to my decision then, to simply, after all, see my mother and spend two days with her. 
Leaving Segev now, for nearly four days, could quite simply be called a leap of faith and one that I have taken; tomorrow I will board a plane and see what's goin' on outside. Perhaps I'll simply find that a few days of quiet worry from afar, without the incessant rumbling of suction machine, inhalation, barking of orders, quiet exasperation and physical exhaustion will be enough to focus on the real purpose of the trip, to simply be, to kiss her forehead and to once again say, 'hi, mom'.

December 23, 2011


Best wishes for sweetness to all readers. Segev making his comeback

December 20, 2011

assistive technology and cannibalism

We take our health for granted, we must. We need to look after ourselves, eat properly and exercise, get expedient medical attention, nip problems in the bud. Have a healthy awareness of our bodies and the various processes that go on inside of us. We need to be aware of how stress affects our well being and here, physicality and mind are inextricably intertwined.  
We take our health for granted whether we do the above stated things, these impossible things, or we don't do them. We must always look forward, passing the gauntlet, overcoming the odds, trudging through adversity. This way we build, learn, create, in short, move forward. But as we shall see, in order to do this, compromise is the reality of our situation.
Is sitting here in front of my computer really a good thing for my poor battered neck? But then again I have thoughts I wish to put down which can help to give me focus in my actions later.

So how is this situation for those that have less ability in our physical world of externals, to show us how much they can move forward? How is it for those that simply are not capable, if measured to the 'average' standard, to move forward at all? 

Years ago I had a discussion with a long time, fervent practitioner and teacher of yoga. He was explaining how the longer he practiced yoga the more he believed that it was truly a sublime way to enter the state of nirvana. That releasing energy blockages through the application of physical techniques and the resulting meditative state was really the only way to progress further towards enlightenment. Many people relate the same importance to prayer. On the other end of this philosophical spectrum are those who maintain that children like my son, who can not communicate in any measurable way, have no control over their body per se and suffer a host of debilitating and limiting physical and mental ailments is already a kind of 'perfect light'.

I too, in reference to a particular extremely compromised child, have likened her to a blinding light that most cannot look at. But my intention was to say that the condition of that child, the pain and suffering, the, for all intensive purposes, discordant pose that the existence of such a child strikes, is blinding in its intensity.  

Obviously there exist certain criteria with which to judge whether a person is capable of communicating. Some without the possibility of communication are branded as having "static encephalopathy" or considered to be in a vegetative state or merely mentally deficient. Anyone who is familiar with the story of Hellen Keller or Christy Brown knows that we have come a long way in adjusting our view of what communication really is. Recently they have begun, selectively, to apply brain scans and electric measurement to determine if people in an apparently vegetative state are actually aware of their surroundings. Though  this inquiry is limited in the extreme at the moment you can imagine that, as the results have shown, it is a gigantic step forward in establishing new criteria for allowing people to regain a foothold on life, where previously they were let into the abyss.
Of course the next step forward will be to create methods of communication so that the content of these individual's ideas can be expressed, their needs met. Eventually we may have institutes that specialize in bridging this communication gap for children like my son as well.
I fear though, that by the time this becomes reality the culture of eugenics will already have desensitized us to the need for such a thing and these people will waken into a world which they will then choose or be encouraged to leave, if they are even given the choice. The point here, other than my opposition to the utilitarian viewpoint (or rather the antiquated prevalent form usually heard), is that as history has shown us, great technology is always a double sided blade. Think of the atomic bomb being dropped on Hiroshima and nuclear energy powering our homes, space travel, or microbes used to heal us as well as being created as toxic weapons.

As I see it we have this very questionable future ahead of us for those who cannot communicate and therefore this is actually a golden age that we live in. Resources, as all parents of 'special needs' kids know, are scarce. Resources for the extremely or absolutely physically and mentally compromised, is just about non-extant. There are exceptions here and there, as I've written on various occasions; Holland is a prime, if paradoxical, example. But such 'advanced' relating to massive disability does not address in any form the question of how technology will increase the potential for non-communicative children or those previously considered to be in a vegetative-state to let their thoughts be known. Will it ever be cost effective? Or will only a senior government official after suffering stroke, or popular formula one driver or entertainer severely brain damaged after an accident be eligible for using this yet to be created technology? More or less, how it often is with today's technology.

So I am not optimistic about future technology helping, especially not when the apparent increase in acceptance of physically and or mentally compromised individuals is met with an equal increasing disdain and contradiction from those that feel there is no contribution on the part of truly non-communicative individuals or that it is simply not cost-effective in society.

Consider Stephen Hawkings. Suppose he had never had any assistive technology at his disposal and that he was born without the ability to speak.  All those wonderful thoughts of his, which some might find quite irrelevant, would never be able to find their way to our consciousness. As the years dragged on he would just be this decrepit person in an institute, being bathed and propped up, fed through a tube and left to listen to music or look at the garden.

Now, not everyone has the caliber of thought that Stephen Hawkings does. Not every individual or child who cannot communicate is a 'genius'. I would argue though as to the value of contribution of his brilliance as we know it today. Or put differently, I would argue we don't have a full understanding yet of how to evaluate the contribution of non-communicative individuals.  He really is a bad example in any case, Stephen Hawkings, since it isn't as though we can expect, even with a light year's advance of technology and the will to implement it for the 'casual' user, that those non-communicative individuals will ever be seen as contributors, as he is, or on the scale that the general populace is perceived. 

But here is the rub. How are we judging others, in completely automatic fashion, to be contributing and consider those that sit in a wheelchair and drool to be decrepit individuals worthy of our pity?
I know that I don't consider rapists to be contributing much to society and there are a lot of those. The reformed cannibals of Liberia? Bomb makers? Racists? Hooligans? Drunk drivers? The corrupt and the sociopaths? This list could go on. We could add them all up, and somewhere in that list you and I would figure as well, and get up to quite a nice sum of people. But they can walk and talk and go to work and build roads and fish and carve and design and paint so they are all contributing. Contributing to what? To our combined experience as a species. 
Just as the experience of caring for a non-communicative, non-mobile, ill child, as best as we can, with limited resources and little if any help, contributes to the understanding of what humans are capable of - honing skills which, as I believe, are just as useful, if not more so, than bungee jumping, driving down a race track at 300 km/h, building roads or writing great poetry.

Many are preoccupied with the endeavor of reducing the number of non-communicative children brought into the world through screening technology. Resulting eventually in an apparently 'better' human race. The fact that these children are part of the human race is being besmudged under the guise of "a life not worth living". Children are being characterized more and more as entering the world with "unbearable suffering", and as I have already written, Holland is that paradoxical setting where 'unbearable suffering' is met with two answers: one is a very supportive society with resources and will to allow the dignity of life to establish a foothold and two, the ever-increasing tendency to opt to simply end the life of such a child.

My question is, with all this technology at our disposal and with the prospect of it only becoming more advanced and, hopefully, increasingly available, shouldn't we be directing all our thoughts and efforts at giving children a stronger foothold on life? Shouldn't the apparent agenda of 'unbearable suffering' be under siege by technology, or should it merely be used to provide better screening of dysfunctional children so that we can eventually heave a sigh of relief at having created a better race of human? Where is the humanity in that when in 2011 cannibalism still exists in places such as Liberia? The use of technology to filter out 'damaged' children will never change the basic defects that we carry that allow the destructive behavior of thieves, murderers or bully's to be a mitigated element where on the whole we are supposedly still 'contributing'.

The world is a dark place and some believe we need hope and light. You can turn to religion or philosophy to try and better our condition, if the will is there. Most people believe they are contributing or at the very least not damaging. That we need more good in the world is definitely a given.
Bringing more people into the circle of our communal experience, instead of ostracizing them, including by means of technology, should be of the utmost importance for preserving more of a kind of humanity which is, if we look at how those that cannot communicate are considered, apparently waning.

December 07, 2011


Segev is still not well. No surprise there. He darts in and out of conscious grasp in part due to his seizures, in part due to the major brain damage, in part due to the subduing medications.
Before he became ill in January, which led to a catastrophic stay of three weeks in hospital, everything, as bad as it was, was better, was different.
In contrast to the other times he has been on the ketogenic diet this time around he is not stable in ketosis and his blood sugar is always low. This morning 58. Giving some juice gets the sugar level up a bit and I can see the difference in his behaviour, less lethargic but this increase in sugar acts like a switch to turn off the state of ketosis which in turn allows more seizures to propagate.

The seizures of consequence, the major ones where he turns blue, despite oxygen, and that last for what seems to be the amount of time it takes to come close to a state of panic, are still there. The diet can hardly be blamed as ineffective when the parameter, ketosis, is not within the margins it should be, or previously was. Everything changes but with a person as medically fragile as my son, that change is pretty gut-wrenching. If I can have a few days wherein, despite the perpetual storms in a teacup, the semblance of consistency weighs in, I am a happy man. Yes! We did it, better sleeping pattern, fewer seizures, smiles, easier bowel movements, less abdominal pain, less shoulder subluxation, more clear easy breathing...
Less is more, right? Well there is only more now. I hesitate to write this because it flies in the face of pressing memories. It has been worse. It seems I am always remembering that it has been worse, no matter what the situation.

I've changed Segev's schedule slightly to allow me to rest one night a week prior to working the next day. This past Saturday night I slept for nine hours and spent the entire day filled with energy. To some this may seem nothing exceptional but I have slept for nine hours only one other time in the last 13 years. Normally I can manage, through one hour accruements, five to five and a half hours. Even if Segev is staying with his mother and I have the opportunity to sleep my body doesn't allow more than six hours. This issue of sleep, highlighted by the metamorphosis I felt on Sunday (a work day), is quite significant. Simply put, fatigue is terrible. It influences everything, from the coordination I need to take care of my son, grind up his many medications, move him with care and alacrity, to my eyesight, memory and cognition and of course energy levels, stamina, patience, mood.

Yesterday evening, while she was studying for a math exam my daughter suggested I take a nap on the couch while she would keep an eye on Segev. I knew she would be immersed in her studies and not able to fully pay attention to the breathing of Segev, or rather how he sometimes stops breathing in his sleep but this was not the reason I opted out of the couch. Nor was it that due to my own neck problems I dread lying down, actually dread even going to sleep, because I know if Segev doesn't wake me the pain will. But Segev was having medium sized seizures every ten minutes, as he went deeper into sleep, each one though threatening to adolesce to a catastrophic one, as has increasingly been the case. 

Each evening is like that. This is in part why it is so difficult to adapt to his sleeping pattern. He wakes sometime after midnight and his last meal, requiring timed boluses to prevent pressure building and vomiting, is still ongoing. Medicated inhalation, his regular meds all have their time to be administered. So often when I am able to put him to bed, awake, it is around one or two in the morning. Then the fitful, pitiful attempts at sleep. Interrupted between five to twenty times until first light by his coughing/choking, requiring the one-two step of jumping from bed, turning on the suction and applying it with dexterity.
Turning him over to lie on his other side several times. Getting up to the pulseoximeter's alarm (which usually signifies that it came off of his finger - not difficult since it isn't a pediatric probe but rather the large adult one since the pediatric ones do not measure Segev's levels properly). Venting his stomach one of the times I get up to his cough and again towards daybreak. Changing his diaper somewhere between three and five in the morning. Or not and having to sponge bath him and change all his clothes and bedsheets at seven O'clock since the adult diapers are horribly inappropriate for a paralyzed young man.

Then the morning starts, usually at 07.00 with a whole new routine, rarely anymore with Segev vocalizing, calling me loudly. Occasionally I'll put Segev on hold for a minute while I try to straighten my neck and then, with cloudy vision I load feeding tube and syringe, inhalation equipment and of course Segev into his chair and wheel him precariously through the ultra narrow hall towards the main living area where coffee resides, the computer resides, light and warmth abide and I actually forget my dreams, dreams of sleep.

December 05, 2011

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