December 30, 2010

At the drop of your hat in the bucket

ripple  by Noa Fischer

Last night was a little less of the same; Segev slept better but still not normally as he coughed and choked his way through the night. In the evening yesterday he had a large seizure requiring oxygen and after that faded into unconsciousness and I put him to bed. This morning as well, his uncoordinated breathing continued but his lungs have been sounding 'whistle' clean, despite the continuous phlegm being brought up. Then at 09.00 he suddenly became drowsy, his breathing more shallow and noisy, though better coordinated, his face red despite having no fever and he stopped reacting to any stimulus. 

The inhalation went well before nine and I was hopeful (testing fate once again) the bad case of vomiting earlier in the week would not lead to aspiration pneumonia. Wishes may be stars that shine down upon us, but apparently their function is limited to letting us know how many wishes there are. By 10 the deal was done.

So Segev is ill once again and I must work today with a sense of heaviness, despite having every right to being tired out from 48 hours of caring for him non-stop; I wish I could do more.

December 29, 2010

Day 4678 (including the night of 4677)

Segev is confused again. He is breathing when he should be coughing. Saliva and phlegm going into his lungs with some mild choking perpetuated throughout the night and now into the morning. I had to jump up out of bed well over  twenty times last night and now to continue new developments his left shoulder is dislocated. I turn him over to the opposite side usually only two times during the night but his left arm was cold, which happens usually when he has been lying not exactly right for a few hours. This time, despite turning him four times, when I finally got up to take him out of bed his arm was again cold. I started rotating and massaging his left arm as he lay sputtering noisily, half communicating and half gurgling and it immediately became apparent that his shoulder is not in place.

winter sky by Noa Fischer
Fortunately my daughter had not left for school yet so she was able to assist. I wasn't able to place it completely back, which I believe is a sign, just as happened with his right hip, that the subluxation is a result of slow permanent changes in the joint capsule. Repeated pressure over relatively long periods of time from not moving. In bed he can only lie on his side, he can't breath on his back because of the development of structural abnormalities due to his quadraplegia and sleeping on his stomach is inviting death by suffocation, even more so because of his seizures.

The good news is that it doesn't seem to bother Segev very much; it is sensitive when I apply pressure but that can be said of almost any part of his body. That kind of pain, by the way, always elicits a laugh from Segev, literally I mean.  His right hip makes a detestable sound when moving his leg outward as the femoral head pops out of place. Again, his reaction is certainly not one of tremendous discomfort and despite frequent physical treatment throughout the day, adjustments to position and changing locales (couch, wheelchair, lap) the persistent immobility does not  allow for the kind of dynamic correction that a cast or brace uses. The 'inconvenience' of trying to treat Segev, which requires a great deal of dexterity and bio-ergonomic know how as well as strength nearly completely precludes using orthopedic devices on him.

The only thing I feel I can do is to continue trying to keep his weight down which is so funny since he was dreadfully underweight for all his life except for the last year on the ketogenic diet and I was thrilled that finally he was filling out. 

December 28, 2010

If it's not raining why is it pouring?

Segev got to the surgeon yesterday but considering the dramatic interaction he has had with that man, the meeting hardly turned into a reunion of any sort. The bottom line is that for the problem of irritation that Segev suffers because his ribcage has expanded beyond the proportion normally allotted, there is no solution other than to have him in less of an upright position. If the irritation becomes severe then surgery will be discussed. Concerning the leakage from the hole in his stomach, around the PEG, I am to call the surgeon tomorrow and he will see if there is a larger size to be found; the manufacturer's website doesn't list such but he seems to feel there might be a channel open to him.

While making some squash and pumpkin soup, Segev next to me in his chair, recieving a bolus of food every twenty minutes or so, through the kitchen window I could see a car park in the driveway; I thought, wrong address or they want to know if they can do some landscaping in the garden, as I never get visitors.

Earlier today I was thinking, wow, I actually have a few bucks in my wallet and I'll probably be able to pay my utility bills on time this month. 
I'm still not sure of the legalese but the man either came to possess Segev's minivan or I was not allowed to drive anymore because of a two year old parking ticket. One that should never have been given since where I parked is explicitly allowed with a handicapped permit. I even spoke to the traffic clark minutes after he issued me the ticket. "You can't stand just anywhere, you know" was his response. This happens often here; tickets are issued for a variety of infractions that the officer knows is illegal but the system succeeds because of idiots like me who just let it slide. I'd have to take a day off and go to Tel Aviv to take care of it and every time I said to myself I should, but never did. I paid the fine,two hundred dollars  including costs and interest. "I'll write them a letter", I said to him as he left. "I don't care what you do", he answered back.

Ten minutes later, I heard a crash of broken glass and looked out into the yard from the balcony where I sat with Segev getting some fresh air. They are building a house next to me but I knew that they hadn't started installing windows yet.
My kitchen window, second floor, broke in half and the top part, fell out. Underneath that window is usually where Sanji, my 16 year old spaniel mix sleeps during the day, fortunately she was in the dog house at the bottom of the stairs.

I cut apart an old computer screen dust guard and glued it onto the window frame. If i was not the envy of the neighbours before, I certainly am now.

December 27, 2010



The night sky seemed to fervently fill with stars and I sit staring, fighting the evening chill, just a little longer as always, feeling connected to this display of plethora as though at peace with the universe, rather comical in light of my failures.

The failure to right the wrongs as they hold in fatherhood, over children brought with willing care into this world but missing the kind of certainty that was my fervent wish to provide. So sorry am I, so misconstrued I feel are my endeavors, that I am left with the hollow hope that they will be able to strike firmly an imprint worthy of emulation, with no less conviction than I envisioned for them.

How can I feel, after all these years of selfless caring for my destitute son, that he is now like an apparition I have been chasing. Trying to convince others of his existence that they should care as I do. Where is he if not only in my mind? Where can he be seen or heard, his laughter muted through walls, hidden no less than a stream of words that scream in my ears, only my ears.

I keep my hair neatly cropped for fear of appearing disheveled, controlling more so those things since all other control is awash in fear. How I long for that fine lather of contentment, not brought out of necessity but rather from a lack of necessity. Ahh, when we were children we dared to hope, we didn't forgive because in a split second the next moment had come to dowse us with new experiences and we were giddy.

I'd say we slept well and any aches were aches of growing. I wish that beautiful ache on my son, whose life is filled from an invisible cup, from which you nor I can ever taste.

December 23, 2010

Just some personal philosophy

The only words that I can think to put down, that might have some lasting meaning, that play along with this egotistical charade to posit Segev's story as myth in our collective unconscious are, 'I have been carrying this burden for so long now...'
But that would be a falsification of my belief that, while Segev may be unique and the struggle to attend to his being may be hard, it is not only one of my choosing, since we always have a choice (but may not agree with the consequences) but my load is no heavier than anyone else's.
I know I am guilty of a form of relativism, though I see it as a necessary intermediary step in the consciousness of society.

Claire has spoken about the difficulties in taking care of her daughter. Her daughter's care is something which has come to shape a great deal of Claire's life, just as it must necessarily do for any parent who decides (consciously or not) that their child's well being is of the highest priority.  She does have help in this care setting, with nurses coming to the home, though perhaps not always the ideal person but that form of help in principal exists. 

Therapists attempting to treat and of course a husband who loves his daughter very much. I mention this because one time she said to me, in repsonse to my feeling how difficult it is for her, especially having had a completely healthy daughter until age 6, that "it's not that hard".  This was perhaps less a false bravado nor even a resigned sigh of anguish, but rather a very grounded and healthy attitude that in the end allows her to be positive about the experience and garner strength for a long arduous journey. 

But Claire's journey is just as hard as mine, I honestly feel even more so. Here lies something important for me, in my relativism, which some might superficially dismiss as an inability to distinguish, which it is not. At any given moment we are made to bear (and bare in our attempt to get proper assistance) a great deal. Sometimes we say to ourselves, "not one thing more or I will explode!"

Until that one more thing is piled on, more correctly, absorbed into our built-in mechanism of degrading elements to fit the form of our psyche, removing elements which are impossible to digest. In other words we deal with certain elements, prioritize (not consciously) and end up seeing the problems we can understand.
Since we don't go through this process for others, we can see them and think, my goodness but theirs is the true hard life.

This is not what everyone perceives of course. Some are busy with their own issues and leave others to deal with theirs, so a relativistic approach is moot. I find I need it though, just as i occasionally need to remind myself that I'm actually doing a pretty good job because the relativism apparently has a tendency to attach itself way too much to certain emotional aspects of the psyche, sending it sliding into a particular area of discoloration.

The relativistic outlook lets me gain perspective that gives me strength. Without it I might get lost in viewing my situation as untenuable, and certainly I have been pulled in that direction by some very powerful forces. 
Make no mistake, the need to attend to Segev is such a powerful force that, though difficult to understand, can actually result in a great deal of negativity. 

There is a need to balance other elements of life, other elements that will necessarily pull you away from that taunting bright light that has entered through every pore. But it is a bright light for a reason; its own reason, it is simply being what it is.

December 21, 2010

Diversity, not lacking

Segev has begun to suffer from a new seizure since about ten days ago. I would classify this as a medium strength seizure because of its length. It is a whole body tonic seizure with intermittent forced exhalations. With so many factors of influence and the dosage of three anti epileptic drugs to consider, as well the ketogenic diet, it is doubtful i will be able to make much sense of this new seizure and thus influence it. 
Over the last two months I have been trying to lower his body weight because quite simply, Segev was getting quite rotund. Not good at all for him and of course more difficult for me as well. For most kids the ketogenic diet actually functions as a natural growth attenuator; both weight and size are subnormal. Segev of course, requires being different. I decrease his caloric intake but he has actually gained two kilograms which points to the fact that he has grown. Still his clothes are less of a snug fit and as you can see in the photo's he looks good so I will keep this course steady.

Segev continues to mend from the exacerbation of the bronchiectasis which dove-tailed into the virus du jour which leads me to the following:

Something unique happened last night that occurred on one other occasion in the last eight years.

©2010 Noa Fischer

Last night, after I had successfully given Segev his evening meal through the PEG while he slept (never ideal, never a choice) and just before I was to put him to bed he began seizing. This was one of those trainwreck events; not only did he turn blue and threaten to bite off the end of his tongue but finally, finally when his body sank back into exhaustion, sputum spraying from his mouth, his legs decided to do an additional Vitus dance, gaining in strength until I literally felt fear well up inside me.

This may make the remarkable thing which happened last night appear rather logical to many. Now we must factor in that since I have been suffering from the dreaded cold/flu virus which seems to have claimed every single host on the planet already, leaving me for last. With an average body temperature of 35.5 C (I am part-reptilian) these are long drawn out affairs with me. And so after two nights in a row of not sleeping, maintaining my work schedule from lack of choice and while beginning my first 48 hour tenure of the week with Segev, last night between 01.00 and 07.00 I did not rise even one time to tend to him.

As I said there was only one other time this occurred. It's not even that I slept through the night, I have a chronic orthopedic problem which is a shoulder-neck-upper back trinity that causes enough pain to wake me. The roentgen image speaks volumes. But Segev, unusually dormant, rocked by his seizure, took the time to recover.

I see silver linings in the clouds and so it may seem that the rest did all of us good. It did. The problem resides with the fact that Segev, with not only no conscious control of his body per se, also possesses no structural body tone, the epitomy of the rag doll, so that his chest wall is also completely relaxed, severely diminishing his ability to breath and maintain the percussive effect of tonus allowing mucus to be brought up. 
In short the accumulation of phlegm in Segev's lungs when he lies for so many hours is bad, quite bad and the morning is spent with extra long inhalation of medicinal substances and physiotherapy that requires simultaneously holding, supporting and treating Segev's heavy rag-doll of a body, all under a certain time constraint for his regular medications and ketogenic meal, which is prepared each time anew by me.

It is  this intense accumulation of problems and logistic details that make his treatment so complicated. At the same time there remains all other elements to address: his stertorous breathing, the reddened skin, to the point of bleeding on occasion, surrounding his PEG, the cold legs and misaligned ribs, the perpetually dry lips and the abdominal pains from heavily scarred and neurologically impaired intestines and so on and so forth.  

These last days, as much as I've been able to perceive through the haze of my own acute illness, has been on par: Segev fading in and out of consciousness. Complaining alternated by happiness, sleep alternated by sleep seizures, coughing alternated by more coughing and suctioning until finishing machine after machine.  

Christmas is fast approaching for those that celebrate it. I actually considered the option of downplaying the event to the point of canceling since this period is so fraught with problems both of health with Segev and my mother as well as financial difficulties. 
She is still not released from hospital due to severe pain and a certain, shall we say lack of fluent communication makes it impossible for me to help her. It being just myself and my three children, I felt even more that they may not be able to enjoy a moment of lightness having grumpy me as their Dad. But I realize that they are the three most important elements in my life and I want, no need, to share some good things with them and show that despite adversity we can still have a good time. 

I rely heavily on my eldest for this as laughter is always guaranteed. His sense of humor ranges from the sublime to the infantile:  Big Daddy Autism, as a connoisseur of potty humor gets the laughs but when your almost eighteen year old regularly and urgently announces his impending bowel movement with such descriptions as "I'm about to engage in 'shock and awe'", "I need some quality time", "the steamer calls me" or "don't go in there, ground zero" the mood is never heavy (no pun intended) for too long.

I've put my sincere wishes for this time of year for all to see on the page to the left. Originally my reaction to Bennie Waddel's post, is certainly what I feel towards many who have shown support as recent blog friends.  

December 17, 2010

Heartbreak Hotel

 If any of you feel that your heart is breaking, let me tell you something; it will heal in time before the next opportunity arises.

Today Segev is not with me so besides three telephone conversations, one to my son, one to my daughter and one to Segev's mother inquiring as to his status, I went to see him at his mother's. The sun was out and he was on the porch, sitting in his old wheelchair, the one I recently renovated.
He didn't react to me. I asked how long he's been like that, my mind racing, 'blood pressure? blood sugar? ketosis? cold?'. I checked his legs all the while talking to Segev in an effort to get a reaction, they were snug and warm with a hot water bottle.
"He was fine until a moment ago".  I didn't like the answer but I know why. I know my mother is recovering from her g-tube placement yesterday and the physician postponed her release because of severe pain she is experiencing.

Segev wouldn't respond and i simply felt my heart breaking. Bad timing.

After a few minutes I decided to call it quits and looked forward to tomorrow when he is back with me, promising myself that he won't get off so lightly then.

this is what I want

December 16, 2010

Scenes of compassion: 4665

There is a law. I did not dream up this law, merely point out its existence. Some of you have felt this law imposed upon you and suffered for it. The consequences of this law are directly and inversely related in proportion to your full-out desire to oppose this law.
The law is:

When the tide turns toward the light, even for just a moment in time, a shadow falls.

photo by Noa Fischer

Segev had trouble breathing yesterday but we enjoyed each others' company. He smiled hugely when i precipitated a "scratch attack" on his arms and shoulders and back. He didn't vocalize but his awareness was acute and his obvious reaction of happiness was matched in intensity only by the severity of the two massive seizures he had in the evening, necessitating complete sedation.

December 15, 2010

Day 4664

Day 4664

Is that really Segev? The boy who continues to defy the odds, struggling daily not to succumb to his myriad medical problems? Who is still acutely ill but on the mend, still having quite a lot of trouble breathing today?
Yes, yes it is.

Today I extrapolated some data from the Yahoo Ohtahara group project to consolidate geographical placement of children sick with this syndrome, like Segev: average life-span is 15 months. 

December 14, 2010

Day 4663

I've been going into the past a great deal lately. I think it may have something to do with my mother's condition but also this long hard journey with Segev. I find myself thinking about experiences I had as a child but also a lot about the beginnings with Segev. When I started corresponding with families around the world, reaching out through support groups and forums and the facebook pages it was clearly because I knew how lost I was then, despite my medical training, no one offering the slightest inkling of help or advice, what to look out for, how to deal with certain practical issues. 

I had to not only learn quickly the medical aspects to investigate as well as treat certain conditions, but because no physician out of dozens could offer more than a shrug I was required to know more  than what the professionals knew and I guarantee you that in many specific areas of study, I succeeded. Not everyone can do that so I felt compelled to try and share some knowledge, succeeding somewhat. Giving free consultations, as it were, since I have little else to do in between the moments of caring for Segev and believe also that after Segev extremely disabled children is where my calling lies.

I have to wonder just how long can Segev last.  I have to live each day as it comes. It isn't possible to plan ahead when even treatments or diagnostic appointments routinely get canceled because Segev isn't up to it. We never go out anymore. Too much equipment to prepare, bring, coordinate, attending to Segev too complicated to do properly out of the home.

Every thing changes with Segev all the time. His environment is stable. His body changes; his chest expanding forward, his hunchback backward causing his breathing to become less and less efficient, more laboured. He has an exacerbation of his bronchiectasis each week now. He vomits frequently, aspirating some, adding to the cycle.

Segev's bowels are always in trouble, in danger of becoming obstructed once again. Work to move his bowels by pressing and massaging his abdomen is not a daily thing; it is an hourly thing.

The number of times Segev gets chest physiotherapy depends on how filled up his lungs are. On good days, with no fixed schedule for each session, they number about five times in a day. On bad days you don't keep count.

It's winter now and since Segev doesn't move; his poor circulation lets his feet and lower legs become icy cold. Keeping them warm is a 24 hour occupation.

Segev continues to have about one hundred seizures a day, despite the three medications and ketogenic diet. I try to rotate out medications, gradually reducing the dosage in order to see if a particular drug is still effective after so many years, having eliminated others altogether. Any reduction sees his seizures increase in frequency and severity. One of the drugs even increases his small seizures, but my concern is naturally for the big ones. The ones that come along like a freight train and take.him.out.

I even went so far as to have the VNS machine implanted despite a very slim possibility for success and now it sits their in his body a cold useless piece of circuitry.  You can't even take it out because the wiring is wrapped around the vagal nerve in the neck and fibrosis won't allow a clean, injury free removal.

You might think all of this is a routine for me by now and here and there I've certainly mentioned these difficulties before. But there is no routine when you can see how coordination suffers in the morning, demanding even more of you. When you forget things and there are time when you find it difficult to focus even on the task at hand. It's like one of those plate spinners who has to run around from pole to pole keeping the plates spinning lest one fall and break.

Segev is ill, so are we all but it certainly has wrung something out of me to keep his treatment up to par. My other two children are Segev's assistant caretakers and they have had to shoulder a little more of the load lately since I decided I can no longer be entirely alone with Segev for two days at a stretch. They know that if they want to go out it depends on how Segev feels. This has always been a shadow over family life but it actually has only started to become the de facto rule recently, since I feel my strength becoming less. 
Early next summer my oldest has to go into the army for three years. I can't possibly think that far ahead but perhaps I need to force myself to do it. It seems that the more decrepit Segev becomes, the more I cling to him and all the more I can feel some other reality beating at the door. How many other responsibilities am I letting slide? I even thought I should devote more time to try and stabilize the financial situation, at the cost of Segev's health since the bigger picture can bring our health down as well. There was a time when I could have shifted my focus but now I no longer even see a way how.

Things appear to be getting more and more complicated and I ask myself how much am I contributing to it? 

December 12, 2010

My mother is not well

For over a year now my mother, whom everyone affectionately calls 'Hansje', has lost the ability to speak because of ALS. We rarely communicate because of her condition and as she lives in Holland. This afternoon I received this message which I am sharing here now, as well as my response.

Dearest Eric  I love you and also in another life my spirit shall be
with you.

Just the facts; i am running backwards in a fast tempo and next week 
get the surgery to place the (G-tube), but as things are going as they go now there
is not much hope anymore. 

 i cannot walk behind the rollator and my strength is totally

it is all too much for Dad he cannot cope with it really and he is trying.

My nerves and muscles are just broken and can only lay down in the 
special chair i have.

Eric do not think about it please, what will happen happens.

All my love Mom

My response:

I can remember all the times I thought, why is she behaving so awkwardly, being spontaneous, offering advice, listening to strangers tell her their stories? Why does she laugh when she gets lost? Why does she speak before she thinks? Why does she have all these 'wise sayings' that she tells people and their reaction is to be taken aback? Why does she act out with her hands what she is already explaining with words? 

But I understand now that the reason you did these things is because you are Hansje. Someone who has always embraced life and shared freely everything that you had, be it personal possessions or knowledge and above all kindness. People sometimes looked at you strangely because they did not know that what you were telling them was not for them at that moment, but for who they would be later, when your words came back to them and they could understand the depth of your intuitive wisdom.

Your hands moved while you spoke because every word you spoke was true to your heart and beliefs and when it wells up from the source it simply requires that extra emphasis of physicality. Just like your legendary hugs.

Hang in there mom and I wish I could be there for the surgery but you know my responsibility to preserve Segev's wellbeing prevents me from doing so.

December 08, 2010

Missing: everything

photograph by candymax

Despite its length this writing doesn't live up to what I had hoped to achieve but given my time constraints, it will have to do for now. 

When you exaggerate people will miss the levity you are trying to convey. But there is one thing I certainly know to be fact after nearly thirteen years of fighting to keep Segev alive: you cannot understand how great the emptiness is, the magnitude and complexity of what was taken and how apparently, to the untrained eye, Segev has nothing yet that nothing obliterates that void.

Sounds like a rather emotional statement to me, perhaps bordering on the bellicose. So let's run through it together shall we? And this is done, not to garner sympathy, not for me or for Segev (the donate button is at the top right of the page) but to gain understanding. Why do we need to understand better how significantly challenged Segev is?

Because there are discussions going out there about rights of disabled children; human rights, rights to benefits, rights to live, even rights to die, and decisions are being made about what is right and what is wrong for children like Segev and less severe cases and we may find ourselves in a position to discuss or even influence opinions so naturally we must be "informed".
And because either Segev has a right to life with dignity or he doesn't. If he does then we have to understand the depth of his problems. Remember no one is asking to fix what can't be fixed, but the truth is that when we save a little bird from imminent death we will protect it, nurture it until it is capable of taking care of itself, while there are those that might euthanize the bird if it can't be made independent.  Of course people like Latimer choose to euthanize their child, while also refusing treatment that could help make the child more independent (all within context of that child's disabilities) and indeed taking care of Segev is quite a bit more demanding than taking care of an injured little bird that has lost it's way.

Again I stress, whatever your reaction may be to a "Latimer", mine is to fight for Segev until I see that he no longer wants to or can and I have been at that precipice so many times, having to decide if to intervene and help Segev to stay with us that surely this puts to shame those same Dutch doctors who euthanize babies with pride because they are certain that nothing good can come of that child's life.  In my opinion parents who are either influenced into such a decision or take it with the thought of the inconvenience a life with a severely disabled child will bring, are like hit and run drivers who, driving at night strike something, see the flash of limbs flailing in the rearview mirror and continue driving "hoping" it's not what they think it is.

This thinking and feeling of mine is a kind of "it was meant to be" philosophy, without the need of religous overtones to assuage confusion as to why this happened. Either life has meaning or it doesn't. When deciding life and death it is black and white by definition.

If life has meaning then to take it must be an act of self preservation. I think some people might want to look at Segev as a human being and reevaluate how they define self preservation.  And so that you know, of all the times that I had to decide to fight to preserve Segev's life, sometimes literally beating the life back into him with cardio-pulmonary resuscitation, there was a time when I held Segev, his breathing having slowed, stertorous, unconscious yet seizing, a long hard dark time when my strength was ebbing. My resolve to do everything and anything did not waiver but the decision whether to call ambulance and rush him to the hospital needed to be made. I knew that his situation was so grave that either he was going to make it on his own now or die on the way to the hospital and I decided would prefer he die in my arms. But he did make it. He clung to life, some will say by chance, certainly chance will play its part in life and in death. But that one time that I did let Segev's being decide, the balance of the scales tipped toward life. You have been measured, you have been weighed and you have been found.

The most important issue here for me is that I am constantly searching for certainty that I am treating Segev with dignity. That I am not encroaching on him my wishes and that this is making him suffer. His suffering is massive, there is no doubt. How much of that suffering does he comprehend? This is a central consideration in all the issues of discussion I listed above. Normally we resolve this through communication

How is that working out for you

Segev doesn't blink but he will lower and raise his eyelid occasionally as a response to a question. As regular readers will know for years Segev smacked his lips together when he was asked if he was hungry (and indeed enough time had elapsed since his last meal) but stopped a few years after he no longer received food through his mouth.  Because he reacts often enough to the question of being hungry in a specific manner and never responds to another question in that fashion I know that he understands it.

If I ask him if he wants a bath, he will blink, assuming of course that his level of consciousness is dialed up to ten instead of the usual 2-5. At setting ten he makes noises, tells stories and may even stiffen his arms for up to twenty seconds out of excitement. At setting ten he smiles almost every time you touch him, move him, talk to him.

Often he rapidly sinks into what appears to be a number two setting but if you do speak to him and hold his hand his eyes will rocket open and his body will curve, often into a twisted morning-like stretch, and this electrical reaction is nothing short of uplifting each and every time.

When Segev is "dialed in" a session of strategic scratching, of his arms or knees and especially back, is met with delight. He can be slumped, with a sour expression, no longer reacting happily to touch or talk but then I have taken him in my arms and using the sum of twenty years of intuitively applying manual techniques to people's bodies, manipulate Segev's back and ribs in a convoluted, circus-attrraction-like position and that glum, pained expression has been replaced by light.

Why is this relevant, besides the joy of sharing experiences of Segev with you all?  It's relevant because I have been treating disabled adults and children for a long time and with Segev being my son, closely scrutinized, weighed and measured, I have come to the conclusion that there are many times when there is the appearance of no communication or understanding, the actual presence of a physical state where there is no communication, but that may respond to the right stimulus and interpretation.

Therefore in all discussions of method and treatment, both in rehabilitative terms and in defining cognizance, there is still room for searching and learning, exploring. Bio-ethics is necessarily as embryonic as bio-technology and the discussion of euthanasia or growth attenuation is not done. 

Some will say, "what a moot point, he is already here to stay, let's move on." Just because Segev got his ticket stamped for this ride doesn't mean others will be as lucky. He is here to stay and moving right along means looking at what his needs are so that he can continue to live out his life with as much dignity as you can fit into a well-observed, well-considered, properly mitigated, true-to-life lowering and raising of an eye lid.

December 05, 2010

This morning's Dream *warning* graphic content of a disturbing nature

The cobblestone city street is broken up where it meets the curb. There is a narrow grave dug there, clean cut sides, a storm drain at the head of the grave, imbedded in the sidewalk. 

A woman  dressed warmly against the cold approaches, kneels down  while people pass by on the sidewalk and roughly tosses the microcephalic, tiny body of her daughter into the grave. The body strikes something protruding from the side farthest from the sidewalk making a thumping noise. The woman jumps into the grave, holding under her arm giant stalks of fresh cut asparagus, to serve as bedding, covering and to help preserve her daughter's body. While alive she doted and cared for her daughter whom she loved dearly.

Suddenly a man reaches into the six foot deep grave and takes out the little girl. He is a massive man, heavily bearded, grey disheveled hair, a man without a home.

"Now, now" he says, holding the tiny body in his massive hand bringing her up to his lips and kissing her forehead. The mother is visibly shaken, she seems to come out of a trance like state and then the old man begins to speak, saying what she wanted to say, to explain to him.

"Oh my", he begins. "No one accepted this child when she was alive". It doesn't matter, she thinks, she is meaningless dead. The man looks at the giant stalks of asparagus.
"Look" he says, pointing at the girls side, raising her shirt slightly to show a red abrasion where the body struck the jutting object.  Her body is still pink, I am thinking in the dream.
The old man has a tear in the corner of his left eye but he doesn't wipe it. The woman is upset, fidgeting nervously.
"It's nothing" says the mother.
"But look!" says the man, prodding the area, now a slight bruise. "Something must be done about this. Poor creature."

Segev's staccato breathing woke me up and I jumped from bed to start suctioning and clapping on his back. 

December 02, 2010

Excellence, compromise, achievement

Society appreciates the best. The best in everything, we strive toward it, it motivates us and makes us feel good when we see success, betterment, advancement, stronger. The champions make it look attainable, you too can do it, or at least try. True dominance, be it in the sciences, Niels Bohr, Einstein, the arts or sports, business or spirituality is lauded, quite justly.  

We are advancing as a species, we excel in dominating this hostile environment, imposing our will, advancing even our instincts to self preserve to the point where arts have formed to exercise our martial tendencies.

So it seems only natural that people who are capable of less are less regarded. Severely disabled people of course, can no longer be looked down upon so we pity them, excluding them from the competition.  
Last year there was a mixed martial arts competition where a natural quad-amputee participated in a sanctioned fight against a regular fighter.  A gross mismatch since it was not possible to gauge the amputee's abilities according to average standards. What exactly he was hoping to prove, I'm not certain. No one can question that he has heart, though.

Society appreciates the best because it helps us to continue to strive to move forward, in technology look what we have accomplished in a mere one hundred years. Astounding. Incomprehensible, and someone who says otherwise, that it was all quite expected is a delusional idiot since the only ones describing these quantum leaps in technology were science fiction writers who were as highly regarded in the academic world then as comic books are today.

Have we made quantum leaps socially as well? Obviously not. We drop the atomic bomb, annihilating over a hundred thousand souls and our moral refinement justifies it as though aggression, in a fight fire with fire attitude, will end when we crush it forcefully. History proves this thinking to be incorrect. We cannot broker our own survival instinct.

But there are those that are certain the next big invention is just around the corner. Some technology or bio-technology will appear that will finally put our fears to rest and help bring true order to human existence, a calm which religion has not brought. We want to get rid of the divisive nature of man, to unify him, through some kind of technological wonder since we are in the technological age. We had a philosophical age, and waged wars based on them. Religious age, the age of enlightenment which saw us conquer the "savages" of the world, in the process reaching new heights of savagery.

So, now technology will save us. No, I don't think so. While I recognize the inevitability of our forward momentum, carrying us to the stars for example, though tempered by the fact that our own oceans are probably 99% unknown and we destroy vast areas of land without knowing its true value, we will move forward, it's in our nature.

But nothing will come along to place order, to save us from ourselves, but ourselves. The only order that can come is that from within.

So while assistive technology will help create more and more equal ground for disabled people, (who knows even for extremely disabled children like my son,) but if we put our collective conscious into that basket then when, oh when, will we concentrate on the true issue of creating a place of dignity for someone who was, through no fault of their own, born with extreme disabilities, even to the extent that they are without the ability to live for more than a short time?

A house divided against itself cannot stand. Polarization is the only result.  Those who seek only strength inevitably decline. In body building, if you don't work to strengthen the synergistic muscles, those smaller supportive muscles, you can never build a strong enough base and injury is inevitable, often debilitating. We've learned a great deal about how the physical body works, excepting the brain, here too advancing tremendously as shown in sporting competition. About our psyches we know very little.

Society can become massively strong, as throughout history empires have risen and fallen, power shifting and change resulting in strengthening. Always there have been sacrifices, those sacrificed. I have no doubt that at this stage, our children are being sacrificed.

The Hastings report on the ethical committee's compromise in Seattle, Washington concerning growth attenuation for extremely disabled children does not give me much hope. Not because the consensus did not come out how I personally would have preferred, but because when you want to establish ethical guidelines the intent is to describe to society what is average and thus normal.  While medical viewpoints are well represented on such panels, parents of extremely disabled children are not and the selective approach of addressing growth attenuation only helps de facto, to define roles for extremely disabled children in society by setting the tone.

Now probably no one will argue with me that it wouldn't be appropriate for representatives of healthcare insurance companies to be invited to the panel for discussion, after all, we can all rather cynically state that insurance companies have financial interests as their first priority and that ethical policy should be concocted without the muddying influence of financial consideration.  As  a matter of fact the case can be made that they would be biased for such extreme measures as an "Ashley X  treatment" since it could theoretically prevent future expenses in the care of the child.

But if we are to be honest with ourselves, financial aspects definitely dictate treatment in the real world. Better care definitely requires government and insurance companies to deal out more,  even in the search for inventive treatment strategies.
But they do in the real world dictate for the most part what is available and so my conclusion is that they should be required in the panels and committee's charged with defining operating policy in regards to growth attenuation since the most basic question of human rights can be addressed there where, as a test case, the possibility for infraction, if not already fait accompli, at least lies in potential.