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

Blogging awards

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November 28, 2011

No numbers for you!

We like numbers, I believe. We like order. But life's important moments don't occur according to some specific number scheme, the date being, after all, a fairly arbitrary concoction.
Segev's 5000th day came and went. The only mention or consideration I gave it was to place it at the head of a blog post. Is it significant? 500,000 seizures, 5000 days of convoluted living, grotesquely dissatisfying, tenuous.
Numbers don't mean anything other than our desire to see order where we are not capable, without proxy, to see order.
Words even, see the explosion of slang in English over the last thirty years, are losing their meaning for people. Communication in general is deteriorating, as I see it. Technology allows us to christen virtual relationships across time and distance yet also to better insulate ourselves from those we choose to.

My mother worked as an astrologist for over thirty years. She always said to people, 'don't take it too seriously, you determine your life'.

And yet there is fate I believe, in a way. Because fate netto would imply that no matter what you do it will turn out that way. This is only partly true. Fate is really just you, that part of you which is your genetic makeup. Because behaviour may change according to what environment you were brought up in but the way in which you perceive is inextricably tied to your being, regardless of surroundings.
That perception can be fine tuned but it will still create the framework with which to react to the world.

I know a few people who always seem to make the right decision, in the sense that life just flows for them. You need to find a place to live, you go out and a few hours later return with the lease for an apartment. That apartment may be run down, in a dangerous neighborhood but you have your place to live and simply don't see all of the inconveniences that living there present. 

Others are always making it difficult for themselves by paying attention to too much detail. Scrutinizing, weighing options. It's not that they are overly particular mind you, the mind simply has to come to grips with a much larger scope of information, necessarily making the decision more complicated. Perhaps this goes together with a feeling of, if your not making a lot of effort it can't possibly be any good.

That is certainly me. Always over analyzing, scrutinizing, weighing. Taking forever to make decisions because I see a plethora of options. Giving weight to tiny details that others would consider insignificant or simply not consider.

It's all because of the numbers, a sense of control. I've written about it many times on this blog. Of course you have very little control of life. I've written about a sense of letting things flow more, not holding on to past experiences too tightly. Part of that is just me, part of that is my experience with Segev. Barring severe illness, war or accident I will outlive my son. That is a given. To say I don't like that idea would be an understatement but I accept it as what life has given us. In knowing that his time is limited and in combination with his 99% inability to communicate, his many medical problems and the pain he suffers, it stands to reason that I would make a concerted, intense effort to pay attention to him, learn his needs both as person as well as his physically decrepit state. That I would fill that limited time with as many observations and attempts to be there, with the right approach at the right time, both as my son and as my patient speaks for itself.

And in creating that life situation, paying a price. Since there is for everything a price, to some extent even that of identity. But actually it is not a price since it is my way of doing things that have brought isolation and my way of doing things which has taxed my mind and body to their limits and further.
To do otherwise would have cost Segev his health. Of that conclusion, after nearly fourteen years of daily care, I am certain. So for me the real price comes with compromising, finding that balance of give and take, for your child and for yourself. 

But Segev is not every physically and mentally compromised child. I have seen others like him, though none that have gone this route for such an extended time. And it is exactly that extended time which has grabbed my attention so strongly over this last, most difficult of all, year. While his care has become more and more demanding, his condition, despite a constant repertoire of new variations of serious medical issues, is more stable. Now, a watchful eye catches most complications before they can arise. So there can be only one real conclusion here and that is that the years of toil have taken their toll. On me. And I knew this would be the case within the first month of Segev's life yet I couldn't have known he would come forward with us until now. Had someone told me he would, then most certainly he wouldn't have because then I wouldn't have made the effort I did.

My old landlord had heart trouble and at the age of 75 had to undergo surgery where his chances of survival were 50-50. He told me how he lay in hospital surrounded by his children and grandchildren before the operation. I said to him, "you must have been proud of the love surrounding you. The care that they were showing".  His expression turned to that of a scowl together with a bit of pity. You need to know that he grew up as a true pioneer in this country, when there was basically nothing. You lived off of the sweat of your brow and survived by the bond of family and your close nit community. "Get out of here. All of you! You're bothering me, tiring me" he said to his children and grandchildren.
I was in shock. "You have to show them you are strong, Eric", he said. "You have to show them the way".

Well, as much as he is my hero for mustering true grit in that life and death situation, with his own mortality so exposed, I can't be that person. Not to that extent. I see Segev's mortality and see cosmic unfairness to be certain. But then I already knew that as well. It seems the great truths are things I've always known and yet, without the experience of living through them, they remain just ideas. Before I thought them to be true, now I know them to be true.

So where was I in my thunderous attack on the universe? Ah, numbers, they don't hold the meaning. They can stand as symbols, marking important events, but they are not the event themselves. 
The event itself has an intrinsic meaning that we can connect to and we mustn't get caught up in outward details which call our attention. Less than 90% oxygen saturation requires the appropriate measure but even then, there will always be other elements out of control, often unmeasurable, perhaps as CO2 levels, exerting their influence. Just as I maintain that our experience of the world is of only the 1% which we can actually observe or interact with, there will always be that measure of influence you have and that 99% where you stand with your hands in your pockets.  

What remains is the value of the interaction. Which often relies on your willingness to see what is not necessarily the most obvious thing in front of you and to that, no number can be assigned.

November 16, 2011

Day 5000

Changing his shirt on my bed is difficult because Segev is sensitive to the cool air of the bedroom. His diaper has leaked as always, due to poor construction, and the goosebumps on his skin make me hurry. But then as i change his diaper he coughs and the suction must be reached instantly and put to use to stop the phlegm from building pressure in his throat which then causes him to vomit.
The shirt comes off with difficulty since his dislocated left shoulder sometimes pops painfully in and out of place with the odd angle of extracting his arm from the sleeve and further causes struggling as it becomes entangled in his two neck collars. 
I put him in his wheelchair. What do I need to take with me from the bedroom? What am I forgetting?
"Alright Segev, let's go. Now we can start the morning, properly, not like this  broken night ."

November 03, 2011

It's a cherry, for those that like that sort of thing

If there was any doubt that Segev is somehow changing, from the drastic and sudden change in his sleeping pattern, to the return of more than two seizure types not seen for years, the days needed for a recovery which is only partial, yesterday was the cherry on top.

I went with Segev to see the ministry of health's committee on allocation of vehicle resources to get their help with an electric car lift for Segev. This also means changing Segev's minivan so that he can travel in his wheelchair, instead of a child's car seat which has been inappropriately small for several years now. Of course, you can't visit government offices whose purpose is to help severely mentally and physically compromised children without finding something to complain about: the waiting area to go in to see the committee is filled with families with their children in wheelchairs. I see a child whose condition approximates Segev although she is much younger and looks content. Everyone else is much less severe but still, severe. Feedings are going on, suctioning, noises, smells as you can well expect from a room full of so many people with 'special needs' kids. But why is the waiting area full you ask? Is there a delay because of the intricate nature of dealing with severely compromised children? Is there more than one committee operating in order to quickly and efficiently process all of the claims/issues? NO, the room is full because when the medically fragile children are required to be present at the ministry of health's special committee, you tell everyone to come at the same time so that it works on a first come first serve basis, meaning that the last person (us) has to wait for several hours for their turn! Goodbye physio treatment at the right time, inhalation therapy, hello complications, awkward feedings, rinsing equipment at the water cooler blah blah blah.

So now to the meat of the episode with Segev. All this time he is hooked up to the pulseoxymeter and I see that he is staring, his body slightly tense and his heart rate begins to drop from his normal of 105 to 72, setting off the alarm. First I think it's the meter as it is sensitive to perspiration and low battery. The battery is fully charged though and I check Segev's finger but find no sweat, reposition the probe on his other hand and voila! his pulse rate starts to climb back up. Climb, mind you not jump.  A few minutes later same thing happens with his pulse dropping to 75 which has simply never happened with Segev. It's now that i notice that he is in this mild staring seizure at the same time as the drop in pulse. I check his respiration which seems normal, take his pulse to check the accuracy of the measurement and rub his chest and hand vigorously to encourage his heart rate to go back up. It doesn't appear to be all that effective but after some thirty seconds his heart rate climbs back. This repeats itself five times. 

Obviously this is something that is cause for concern. It has never happened before that his heart rate takes a dip like that. What did happen on a regular basis in the past and only infrequently now is that his heart rate would jump from 105 to 130-160 for no apparent reason. I twice visited with a pediatric cardiologist who insisted this was a sign that his heart was healthy and that a lack of range in heart rate would be cause for worry. But of course he had no explanation and was not willing to pursue any course of investigation.
Another frightening condition in the past was paroxysmal hypothermia where Segev's body temperature would drop to 35 degrees centigrade. He was listless and unresponsive even to pain stimulus.

What can you do but ride these waves and ascertain that yes, water is wet? Segev is starting to get back into ketosis and so soon I'll be able to see whether that treatment is sufficient for the time being or that I have to start pulling my hair out.

For the moment his lungs have cleared up and though the only reaction he seems to have now to anything is yet another seizure, he isn't in any pain, which is definitely a blessing.

n.b. we got the authorization

November 01, 2011

A meal in three courses.

Appetizer (ten days old condensed consomme) 

I had to grovel the other day. Admittedly it wasn’t the first time. Last January when Segev was in Hospital for three weeks I also had to grovel and beg to survive. At least I didn’t cry.

But I had to expose myself with all of my weaknesses, or rather show what a failure I apparently am that I had to beg for help. In February it was in order to pay my rent, today it was in order to get a break on school tuition for my daughter.

This is all very humiliating to me because I work hard at everything I do. In thinking about what this means I have come to the conclusion that with hard work you can reach your goal, but that some goals are mutually exclusive.

If your goal is to make a decent living, barring accidents and a string of bad luck, in applying yourself sufficiently coupled with seizing opportunities, success can be yours. Of course seizing opportunities is in itself a mighty task and applying yourself sufficiently may see you treading water as well.

If your goal is to set up an organization to help inform about a particular illness or to provide assistance to certain groups that are in need of it though, in other words if you are living your life according to ideals, then I think the mutual exclusivity comes into play.

I see this with the school issue. I honestly did not want to be at that meeting (which I had called) because of the embarrassment of having to state my case, which is basically that I have not succeeded in balancing the role of provider for family and caretaker for Segev.

I thought that perhaps after the meeting, after I had to “bite the bullet” so to speak, I might feel a little relief, as you do when you are nervous about something but once you go through it you see it wasn’t so bad after all or it strengthens you since you have now learned a new tool. But I felt none of that, actually I felt even more miserable and there was more than one moment that I seriously considered ending the meeting prematurely. I know, I’m weak in those moments, literally. 

As it turns out the meeting went as I thought it would. I pleaded my case, looking for a way to reduce the financial burden of the school tuition and I was met with incredibility. “I don’t believe you can’t even save enough to make such a small contribution” was a sentence I heard. Way to step on someone when they are down.  I said that was a hurtful statement and had to delve deeper into personal details in order to convince the principal that indeed I was sincere. As I wrote earlier, I had to grovel, I had to plead. In the end we struck a compromise, very fair on the principals part but nevertheless still way beyond my means.

So I started thinking even more intensely about this lesson that I had learned already, about how with one goal in focus it often precludes succeeding in another. My commitment to Segev means that he is 85% of my work, only that I don’t get paid for it. In this country there is, unlike in Holland, no provision for remunerating parents as a paid caregiver. So can I change my goal? Can I cut some more corners? Getting more work is impossible. The physical effort involved in giving treatments is pretty exhausting and I do my work normally after a 48 hour stint with Segev, where the nights are made up of  up to one hour of sleep at a time, amounting to a total five and a half hours.

Entree (reheated not left simmering from last week)

Betrayal. What does that word invoke for others, I wonder.
But first an update about Segev. The problem of updates about Segev is that they are normally rendered redundant a few hours after the writing. It has been several days since the surprise return of those massive seizures. Seizures which were once a mainstay but were replaced by myriad small to medium seizures which daily work their dark magic on Segev's mind and body. He still has not returned to baseline, a minority of his reactions still off or simply, not there. Physically what can be expected but deterioration?
But we shouldn't dwell on the negative things because that is a bottomless pit. Besides, recent events, personal events, have skewed my view and no doubt lend a darker atmosphere to the daily going-ons.

The body, my body that is, certainly is taking a beating. I tore a muscle while out jogging. Even resting a previously cramped muscle for a week and going through a proper warm-up, massaging the calf muscles and starting slow and easy didn't prevent the loud snap from sounding half way through the run. Hobbling around the countryside, on stony paths and down hills, I barely made it home. I'd say that is a kind of betrayal since for once I didn't punish my body and force the issue but took proper rest and treatment. On the other hand you can see this "betrayal" as being told, "whoa fella!", you've gone too far. That's the more positive attitude to take. Let's see how that plays out in other situations.

Then again, like in the case of the grotesquely progressive illness my mother suffers from, through no fault of her own, we are struck by the concept of "fate". Meaning, no direct connection between action and consequence, unlike my torn calf muscle. What do you do here? Call it betrayal? Only if something is definitely directing some malevolent force against you to bring it about. Not the case here.
So we see that whether or not we have realistic goals, apply ourselves or not, take care of ourselves or not, life is rough. A bit too rough for my taste. Where are the time outs? Oh, I forgot, that only existed when we were children, because our minds weren't fully developed yet.  That's actually a nice thought, though, when I try to conceive of how Segev might understand things. How his mind tries to create a perspective that, in acting out of self preservation, makes things more comfortable, less terrible.
It is a most distinct mixture, this observation that life brings us incredible hardships and my most sincere feeling that I am thankful for what I have, knowing it could all be much worse.

I have surmised that many think, "better not to dwell on these issues". Lest one ends up feeling sorry for oneself. Lest the situation actually does become worse. That rogue 'apathy' has reared its ugly head more than occasionally. And I've come to realize, to fervently believe, that withdrawing, existing in a state of quiet limbo hoping the monster will pass, is just so wrong. So counter productive. Because I believe that this little niche of ours, this world of parents writing about life with their children who live in a bubble of absolute fragility, is contributing to the development of our collective sensibilities. It's not a very tight nit group really, having such diverse points of view about such a varied collection of needs. But it is striving to put its voice out there, truly crying in the wilderness, and with perseverance our perspective will ring true, at least enough for ourselves. Because don't forget that sharing the details and considerations stemming from a hard life, is often as much an attempt to make order inside where chaos tends swagger with relish.

When my mother's speech began to slur, and in the course of several months disappear, I knew what illness she had. While from a distance I tried to steer some medical investigations necessary to confirm my suspicion I tried to put the emotional impact of my realization aside.
It took the neurologists almost eight more months to come to the same conclusion as I had. I spoke to my parents, trying to guide them, not in coming to terms with the illness, but in practical issues, looking to address potential problems as well as slow down the progression.
It was not to be. The long distance has proven to be a great hindrance.
But now, with papers signed, wheels set in motion in the Dutch bureaucracy. There are choices being made and the emotional impact is weighing heavy on me, the choice before her stands opposite to that of the nearly constant pain she experiences.

"(Life's) not fair". That platitude, when it came from the mouth of my mentor, a woman over fifty five, phsychologist and educator, a concerned half smile added for effect, made a lasting impression on me. I had no idea what she meant by it.
The first time I heard it I was 15 and during the next 17 years until her passing I would get to hear it four more times. Her death seemed to make it ring even more hollow but I had to give her the benefit of the doubt, that she knew what she was saying, as she had made key statements to me during the years, whose deep relevance often became apparent only years later, after I had garnered the right experience with which to understand them.

But  learning those lessons of passage and dying, being part of life, I should astutely except the natural flow of things and continue wiser.
The only problem is, I can't. The very worth of an experience seems to linger on, as though there is an eternal doubt as to which direction time is flowing. I don't let go and this certainly strengthens my feeling that the important aspects of my connection with a person or experience remains active for all time.

Some people see ghosts, I see past experiences and they dance lively in my mind, sometimes without even being certain what it is they are there to remind me of.
"Life's not fair". Yes I know that. Anyone expecting fairness is living in some kind of fantasy world. But just how harsh life can get is considerably depressing.

But when there is malevolent force at work in your life, what about then? What is the right perspective to have in order to not be derailed? Here, over the last week I've had to deal with something that has, to my surprise, cracked my universe. Sometimes something from outside your frame of reference enters your life and simply sideswipes you. Something from my past came to a head last week that seems to have put a stamp on all the negativity of my past relationship with "partner X", and without much surprise, the more trust you place in a person the harder the severance of that trust hurts.

Side portion of disappointment

I., the Siberian-Russian woman in her 50's, out of shape and smoking, who was here for a month, twice weekly for four hours, quit on me. She said the physical work of helping me clean (we went side by side working together) and maintain the house was too much. She walked here, (15-20 minutes) and would arrive huffing and puffing. I could see that it was getting to be too much, the quality and quantity of her work dwindling. I suggested a herbal remedy which actually helped her tremendously, by her own admission, but it wasn't enough. 

She had worked for years in the hardest chronic care wards and I could tell from her demeanor, her stories and her relationship to Segev that she was smart, caring, with an eye for detail and especially some ingenuity, combining that caring eye with curiosity, to create little patented methods for wound care, changing clothes and other practical issues. She also said the other four hours that she came exclusively to help with Segev were time wasted. She had almost nothing to do. She didn't try to find any solution with me, merely asking Segev's mother to pass along her resignation.  Whatever.

More cynical? Yes. Time for something sweet.

Desert (update)

Since the 20th of October Segev has not been doing well. The seizures that are plaguing him on top of his 'regular 100' are continuing. The fact that he does not recover within a few hours but rather days means that things have once again changed.

It is possible that the change in weather has some influence.

Segev has a little bit more phlegm than usual, which could contribute to more seizures, though this wouldn't explain the intensity and return of the massive seizure.

Hormones. Segev is after all closing in on 14 and despite that he does not grow normally he does show signs of maturation.
On the other hand his testicles haven't dropped yet and the influence of this is unknown.

As has happened in the past the AED's lose their effect over time, this was after all why i finally went with the ketogenic diet. The diet however also seemed to lose its effect after a year and a half and Segev started developing kidney stones so I took him off of it some time around may. As of today I have reinstated the diet.

Segev has been weighing less, ever since his near-death experience at the beginning of the year when he was hospitalized for three weeks. Despite the drop in weight the neurologist advised increasing his meds, which I did, eventually having to do a 'dancing chairs' regimen until things seemed more or less settled until the new seizure showed up. In the end I went back to the original increase the neurologist preferred but there has been no improvement over the last few days. 

I decided not to wait longer since practically the combination of increased meds with lowered body weight can actually lead to increased seizures, (it's happened with Segev). So I decided the diet was the safest bet.

I know no one likes to think this way, preferring to always keep a positive outlook but several weeks ago, before this started I had a bad feeling. Perhaps simply because then Segev was doing quite well.   His bowels were very irregular  but he no longer had the excruciating paroxysms of pain. The yawning 'seizures' were at an all time high, his breathing not good but he was just so AWAKE.  Reacting with facial expression which he had never shown before, smiling a lot, communicating loudly, and this kept up for a few months. Then his sleep pattern suddenly changed, seeing him waking up at 12.30 and staying awake the entire night. Because of the massive seizure (which always comes in the period of late evening till morning) now he no longer stays awake.

I feel, and here we certainly get into interesting territory, a connection with my mother's condition and Segev. This is certainly the realm of superstition or simply the depressing reality weighing on my conscious mind, depending on how you like to look at it.

I've felt this way before and look! Segev is still here. 
This relationship of the constant practicalities of Segev's condition, finding solutions and the confusion that caring for him brings about has become much more apparent to me lately.  
It seems to me almost as though, just as with the case of my mother, that I feel more and more, what can't be done and I find myself feeling frustrated by it, just like when, as a six year old I had decided to become God, in order to change the outcome of people's lives to something better.  And in my mind I tie this directly to my recent assertion that true communication, the ability to exchange understanding, is very limited.

In other words the ability to affect change is more limited than what I had previously thought. I hinted at this in a guest post on Phil's blog , referring to "the initiated" as being the only ones who could "get it". You have to be in tune with a person to understand their needs and then to effectively communicate, to bring about a positive change...well it seems that, as often happens with parents and teenagers, Segev and I are not communicating all that well lately.

October 30, 2011

Finish what's on your plate

It seems to me writing about my son Segev actually makes the journey appear longer, though strangely somewhat less anxious.
There is a saying here, in this warm climate, often heard, "this is the hottest summer yet". Every year it is repeated and I always thought to myself, 'what are they on about?'
And so it has been with Segev, each year seems to be harder but I know that for a good part it is my becoming a bit older, wearing down the polished surfaces of experience nearly past the point of usefulness. Now the edges are becoming rough and the anxiety is definitely increasing proportionately. Less capable of caring for him at 46! That's a laugh. So it must be psychological.
And there is something not so funny.
Segev continues his recent regression unabated. Flaunting his delicate balance, headlong into the oblivion of those massive seizures.

I have tried to take catnaps while my daughter keeps an eye on Segev and I succeed every so often to doze off for fifteen minutes or even more but it is only just enough to keep me going while repeatedly I feel my eyelids literally closing on me in the evening.
The nights remain tense with his staccato breathing, rasping violently like an old car breaking down. Neck muscles tightening, my neck muscles as well with resultant dizziness and trouble focusing in the morning. Segev quite oblivious for the most part, catching up on his sleep throughout the morning.

It could be worse I say to myself and yes, I do believe that. Have to reign in the shakiness a little, remain focused as I have often said and always be at the ready because when you are feeling weak and tired, you've had your fill, that's exactly when -BOOM - you get clobbered. Unfortunately I can't go into the details of the clobbering that I received, but suffice it to say that it concerns some troubling matters from the past coming to a head.

Insofar as the normal issues are concerned,Yes, I know I'm trying to be lyrical about such mundane acts as sucking Segev's stomach contents out through a tube, enjoying sprays of bile and acid in my mouth as the pressure suddenly releases for the umpteenth time today. Gagging and nearly retching despite it never having bothered me before.

Stress works in mysterious ways. In the skype chat I had with my mother, after yet another such long silence because she doesn't have the energy, at the end I always blow her a kiss, after her own habit and she tried to raise her right hand to her mouth and couldn't do it, looking pleadingly at my father to take the laptop from her. I sat stunned.

Being an adult is not the fun I thought it was going to be as I wrote story after story, day in day out, an exuberant 16 year old, looking forward with inexhaustible curiosity.
Yes, I am angry, simply because I don't feel I have the physical strength to brace myself cheerfully and try to make things alright.
Clobbering by betrayal will certainly suck the wind out of your sails, in troubling ways that I didn't know existed. And the more trust you place in a person the harder it hits you.

But don't get me wrong, and I've found myself saying "it's not meant as a platitude" in several places lately, this negativity takes place parallel to but not in place of a strong healthy stream of acknowledgement of positive things.
Well, that should be clear to those that have read well previous posts.

My mother's last sentence, which she wrote in the chat, was "Segev is so lucky to have such a great father", and I told her, "I'm lucky to have such a great son". And even now, with the gut-wrenching seizure of an hour ago, his inhalation therapy running and the prospect of a troubling night ahead, looking at Segev, who has no demands, is so accepting, acts to calm me and put in perspective my frustration with the inability to change the situation.

October 20, 2011

XL stands for extra large

Segev is down for the count...6...7...8...

The simple perpetration of violence on his person, by the return of a monstrous seizure long since not seen, like the blight of a wholly sadistic god, like the snap of the marauder's whip. It comes twice in the night. It levels him.
You have been weighed and you have been measured, and you have been seen fit to be trampled upon and smothered.

This of course comes at the close of several good days where, though  in the usual way tiring indeed, I can say Segev is as stable as he can be, as healthy as he can be. No, I didn't let my guard down and yet didn't see it coming.
Just one more seizure to add to the five hundred thousand already had? I suppose. His body temperature went down so I covered him with a blanket after cleaning him  of the excess, escaped urine. He lay limp, unconscious. His heart rate dropping from the diazepam but the oxygen monitor never even once sounded an alarm .

October 13, 2011

Gunning the emotions engine

People with blogs, especially those associated with some form of physical and mental compromise (PMC), often point out that in society, disability is seen as something terribly negative and horribly adjusted, or compensated, for. I've made the statement that part of the problem of advocacy is the lack of homogeneous needs to spearhead social controversy. Also, different areas of compensation are at different stages of development due to both the dynamic nature of disability in society (think 'neurodiversity' for example) as well as prevalence (think cerebral palsy).

Part of the problem lies with basic psychology that looks upon the compensation for disability as being an intractable assertion of 'special' status which translates in many minds as, having needs above that of the norm and thus more than the norm. Make no mistake, homogeniity is what has built industry, society. Exceptions are to be crushed under the giant wheels of progress etc. Fitting that over at Bad Cripple Marx is brought up where the worker's struggle is seen to have its parallels with advocacy for disability.

One trump card, poorly played by the advocacy people, is that fact that anyone can become physically or mentally compromised at any time. Through stroke or accident. I've treated a number of severe stroke patients and watching the turmoil of trying to communicate, through a body that will no longer listen, is angering. One minute healthy and then BAM!

Amazingly complex, our society is bound to produce more and more "mistakes", be it physically or mentally, more and more accidents, despite that we try to reduce those. War makes its devilish contribution as well.

When I was 17 my best friend was involved in a motorcycle accident. He was pronounced brain dead, physically his brain was so heavily traumatized that the neurologists could not see any higher level function being retained, but he woke from coma after many months and though unable to walk normally, talk normally, read or write, with profound changes in personality and memory, he lives until today, has raised a family and is practicing in his father's profession as dentist. 

What kept him alive is his parents' relentless devotion. This in term stemmed in no small measure from the knowledge that their son had an immense desire for life. Both before and after the accident. Of course being young you have bountiful life force, desires, passions, hormones. But he had something extra, a strong personality, charisma, but he was in all a very gentle person and the amount of love in the family was always clear to me as a regular presence in their home.  And think about it, after the accident, as he made the long, long painful road to recovery, knowing how badly he was injured. Losing many functions both physically and mentally, confused at times, he went through severe depression, the foundations of which, his catastrophic disabilities, were rock solid. 
Despite the ability to do so he never attempted suicide. He wanted to live.

My Segev is the same. He had many opportunities to go, to say, that's enough now, Dad. And I, at my most exposed moments in life, baring all, emptying myself of all ego, had to say, "if you want to go, so go". But he didn't. And he was able to bounce back and continue smiling, plodding along until the next crises.  
My not giving up on him, my devotion, on a daily basis, the little things, the devil is in the details attitude helped build a base for him to rest upon in those life and death moments.
I look at it this way: death comes to us all, but we are here now for a reason. For me that reason is non nobis solum nati sumus. To me this means a conviction to carry on caring and connecting out of respect, a goal that every day challenges me anew.

My mother lies in a hospice setting in Holland quickly progressing through the stages of ALS. 
A woman with tremendous life force, singularly positive in her outlook, standing up for her beliefs, acting against injustice (at the most inopportune moments) and above all a great communicator. She lies for the most part silent and in pain. The first thing that went was her speech. How ironic. Yet for all her verbosity she always spoke at a civil level, never in need of raising her voice to try and make a point. Always excepting, out of respect, the others' sense of self. Always on the lookout for social injustice. 
But now, having become ill after such a vibrant and heartfelt run at life, she lies suffering in pain most of the day with only small moments of respite or brief fleeting apparitions of happiness. I cannot say how much this pains me. But I will take her example of how she has been living up to her illness as a strong condemnation of negativity, as though I needed such a thing.  

Chances are we will be in or know someone in a position similar to those described above.  Instead of being afraid though, instead of helping to make outcasts, well....outcasts,we should realize that while for some the idea of having a choice, to participate or not, to be included or not, may be the most important thing, the really important thing is that a society functions best when it protects its members because otherwise we are, to put it bluntly, allowing our own primitive nature as human beings to cull the 'weak'.  If we can't actively work towards the future, because despite our "life is short" commando cries, the future will come, then one day we will find ourselves in a terrible position of making yes or no decisions and wondering how we got there. The future we need to be working toward is one  where life as a disabled person is fraught with less anguish for   everyone and where 'dying with dignity' doesn't mean choosing when and how to die but rather living within  respect.

Like my friend who suffered the tragic brain damage due to an accident, my mother is coming to a place where she is running out of options. When you feel like you have no choice though, you may come to a situation where 'yes' or 'no' are all that is left. I can only hope that each and every time the answer will be yes.