November 30, 2012

Les uns et les autres

More and more it has come to my attention how caring for my son has isolated me. It has left me with less understanding of how people relate as I have gained a deeper understanding of the essence of caring for another person who cannot answer their own needs. 
In trying to extricate people from difficult circumstances I have lost an ability once taken for granted, where the sense I could make of a situation was a shared understanding. Now my burning desire to garner a true resonance with ill health and to sway its course has brought me to a place where everything else seems, well, less than whole. In other words, I've become a fanatic.

The last three days were spent with my son in hospital, as I told one friend, a "last hurrah" to bring to bear the perspective of others onto his health problems because I know that, without causing him duress, there is still work to be done. I can no longer build him up but there are still avenues to explore to slow the rate of decline. Through perseverance and perhaps quite some luck hospitalized consultations were scheduled at the children's  rehabilitative hospital in Jerusalem.
Without regard to outcome in the limited time available, there was a concerted effort to explore options and a genuine interest in supporting us as a family caring for Segev. How ironic that the only other person able to accompany us and most needed, was my ex-wife, Segev's mother.

So many hospitalizations over the years. So often my decision also not to hospitalize but rather weather the storm at home with absolutely nothing holding such a decision together, not even hope, but rather the ephemeral quality of faith. So very very strange that at such a late stage in the game perseverance and luck became co-conspirators operating wholly outside of my ability to control them.

When I wrote previously of the meeting with the head of ICU, a kind of mechanism was set in motion that took me completely by surprise and by the time I had pushed forward with appointments and authorizations it was too late to ask myself that question to which the answer turned out to be "no": do I have the strength, at this stage, to make another run at it?

We spent three days in hospital, with practical application of respiratory devices and a variety of consultations, x-rays and social support which has left me feeling 'wiped out'. 
I don't trouble myself about the sense of confusion I have, after so many overly intense years of directing action and mitigating influence. Of studying information discarded seconds into a meeting, or rehearsed conversations designed to steer thinking towards specific lines of investigation which has become a nearly futile endeavor.

In hospital, such as last night, one of the worst nights ever as I worked from two O'clock in the morning for three hours to make a change in Segev's breathing as he calmly remained apathetic yet in the end, and for the first time ever, did not yield to my relentless efforts, maintaining a serious deficit in breathing. Finally at five O'clock I called his mother to come, not even thinking of asking for relief but knowing that I was waning, if not in resolve then in ability. 
Again irony struck as for the first time I conceded defeat and let myself be convinced that the only way to keep on going was to go and rest.

You like to believe that with all the experience you gain in being an extreme caregiver, a parent dedicated to compensating as best you can for what you see as a gutted life, with decades of dedication to treating patients with their ills and woes, that you would necessarily become hardened with the vigor of knowledge and steeled by the application of grit night and day, endless night and day.
But what you become is actually economical and specialized. Your clarity is unsurpassed in the extremely narrow margin of life you relate to (since much is relegated to a place of lesser importance) and your legendary strength exists, no not merely in your own mind, but only under well controlled circumstance.
In other words you are weak but you fight to admit such a thing, simply because you fear that weakness will hurt this endeavor to submit circumstance to a more favorable outcome.

So I was grateful to yet again be humbled by the stay in the small specialized hospital in Jerusalem. There is nothing quite like seeing so many people, children and infants in such a wide array of severe physical and mental compromise, represented in one place. So many standers and walkers and wheelchairs, occupational therapy, cushions and braces, respirators. Different forms of communication, motor control, and surgeries undergone. Smiles and quiet conversations, dedication.

We entered a socio-medical system which has nearly always failed my son due to his unique set of problems and my lack of compromise. 
It's simply not possible to maintain the protective environment, mostly the 'home routine', in hospital. The sheer energy of the place was sensory overload and brought social awkwardness to the forefront; congealed around my spartan social life and nearly singular focus on my son and I felt put through the grinder as certain issues arose. Adjusting to a room full of children, each one with serious problems, all ages, everyone's alarm going off for a different reason, sometimes in unison, mostly during the night, is cause enough.
Sleep is even more of a joke than at home and as the children's stories becomes better known with each passing hour spent in the hustle and bustle of a respiratory rehabilitation ward room, you wonder if you have the strength to stay and play out your hand even though you have no idea what the game being played is.

Segev had ups as well as downs. There was a great deal of inconvenience to overcome (no coffee within five kilometers being one of them) as well as the necessary tension that ex husband and wife can have in such circumstances. Without a doubt though, to further add depth to this different experience, Segev behaved extraordinary on occasion while there. One physiotherapist spoke to him to gain his trust before placing the IPV firmly on his face and his eyes darted toward her face, a first in all his life, as though some connection snapped into place. When non responsive his stupor was as deep as ever but with less visible tension in his frail body and when he was animated, certainly more there than usual, his vocalizations were also consistently longer.
He understood he was in a different place and reacted to the increased level of activity around him which made me remember the bitter feeling of shame when years before, his circulation in public diminished as the burden of his condition made it unreasonable.  

I'm glad for the assistance in these attempts to help my son, regardless of outcome. What a coincidence that as I was uncertain if I actually had the strength to go through with it, indeed finding myself confronted with a much greater weakness both physically and mentally than I could possibly have realized going in, at a time which can only be described as Segev's limelight. Part of my strength has always been my son's resilience and good nature, the purity of his life experiences. For some part  his in return has been my not knowing when to quit. All this may sound rather premature and bodes of self fulfilling prophecies but, as a friend said to me recently, as though these experiences necessarily envelop us in a dream like confusion, 'none of this was imagined'.

November 19, 2012

Some things never stay the same

In an attempt to follow through on this ambitious project to better my son's chances at survival, to address the decline in his lung function, I met with a chief pediatric neurosurgeon to determine if visualizing the phrenic nerve via MRI would give us useful information and if so to get a written recommendation. When I called the pediatric hospital out-patient clinic for an appointment I was given a one and a half month wait that has gone by surprisingly quickly, filled as it was with such a constellation of activities surrounding the issue of Segev's impending admission to the rehabilitative hospital in Jerusalem. Then the day of the meeting came, coinciding with one of two work days where  house-calls to patients has been a mainstay for nearly 23 years. And I forgot about the meeting.

It was too late even to rush down to Tel-Aviv and be a last straggling father, desperate for better information and support. Kindly they added me to the following weeks' horde of parents, all of whom came with their children; after brain surgery or for consultation while I would sit quietly on the hard plastic seat in the brand new building, observing these, mostly quite young, parents with their babies, wondering what was still waiting for them as I had passed through similar clinics and trials with my son for fourteen years and counting.

What struck me most about the people there was a sense of calm and even contentment that they radiated. Still, I couldn't help but feel a brittle undertone, hiding beneath the surface, waiting for some moment to make its presence more substantial. These were problematic children, not so much in behavior but in medical status although it seems that the help they received at the hands of the Professor, assuaged their fears, as several spoke glowingly of his accomplishments with their children especially in light of the horror stories of misdiagnoses at the hands of others. 
Then came a mother, thin, very 'well-kept' with make up, fashionable accessories, proper hair, leather boots and an economy of movement that shows a person who is either shy or conversely, knows exactly what they want. She was very patient with her daughter who's head shape, despite excellent body motor control showed dysmorphic features. The girl, perhaps nine or ten years old repeated every sentence the mother said and spoke frequently, asking questions that children often do about their environment, affirmations, "Are we here to see the doctor?" and a running commentary on noises and movement in the waiting room.  After nearly one and a half hours of waiting the mother was showing some signs of agitation, she tried unsuccessfully to turn on the large screen television in the waiting lounge but I was surprised she hadn't brought a book or toy or engaged her daughter in some kind of game. 
The girl was now sitting next to me and while she looked at me she asked , "are you my father?"
I waited for the mother to respond and she did say something which I didn't quite understand. I thought of saying to the girl, "perhaps I remind you a little of him?", out of an awkward sense of trying to help the mother, who perhaps had heard this many times before but of course only said, "hello" after the girl had turned her head back to me.
"What?" she said.
"Hello there." I offered.
Without blinking she gave me a "wassup?" but again turned back to her mother, not expecting an answer or perhaps wary of the possibility that a conversation would ensue. 
"You're bothering the man" the mother said.  Again I felt like saying something, to let the girl know that it was of course no bother and to let the mother know that it might actually be OK for her daughter some more interaction (there was also none between the other children but then most were infants) but then I knew that there could be a damn good reason why the mother curtailed the possibility. I reasoned that her daughter might get upset if the conversation went on, she might get confused or hyperactive and everything about the mother, because of the terse movements of her arms (though her walk was actually a bit swaying for her thin build) and the lack of engagement of her daughter meant to me, control. A precarious situation, especially in a public situation for children who might only thrive when in the comfort of their familiar surroundings, and so I said nothing at all. 
I did have to think about the girl's question, "are you my father?" It might have been a random sentence, such as also regular, smaller, children throw out there, without any real context. But while she would repeat each sentence her mother spoke her observations were firmly rooted in the here and now; she never went off on some fantastic tangent like when small children slip into their own world and create narratives that are more real to them at that moment than what they are actually doing.
It seems the girl was expressing a real deficit in her ability, at least in that environment, hence the repeated affirmations  in an attempt to remain attached to what she knows. Perhaps at home she would never utter a similar sentence and so the mother is able to separate the context of her daughter's identity into familiar environment and 'other'. But that in itself is not an easy pill to swallow, to realize that in certain circumstances the disorder, illness or neurological deficit, is our child's identity.

I waited for nearly two and a half hours and the neuro-surgeon, replete with entourage of physicians hoping to specialize in his field of expertise and medical secretary, called me in.
I was back out in under five minutes as he sucked the wind from my sails. Well, that may sound harsh, he was congenial enough but I guess he just caught me by surprise when he said that an MRI won't allow us to visualize the phrenic nerve and possible damage and that in any case the treatment of adhesions by debridement was "no longer really an option" and the best way to go was the recently introduced diaphragmatic pacemaker (which I had discussed with both the pulmonary professor and head of the rehabilitative hospital).
I've put in the paperwork to get (financial) authorization for a three day stay at the children's rehabilitative hospital in Jerusalem and presently am waiting on an official date for the admission (as soon as a bed opens up). 

Segev continues to require close scrutiny as his seizures are never more than slightly controlled and his base saturation level, seen when removing the oxygen cannula when bathing, changing him etc, continues to drop. Over the past few days he has been complaining more from pain and I have finally had to order the vaporizer machine from abroad to use with the medical cannabis (finally authorized!), as I was unsuccessful in obtaining it by other means (lending, voluntary homecare organizations) and the normal cost of acquiring one here is over a thousand dollars. So I am anxious to try it on my son as it has been shown to benefit lung function, inflammation, pain and yes, even some seizures as well as helping in spasticity.

Last night I returned home late from work and over the phone, during one of my frequent check ins with Segev's mother, I could hear him crying from pain in the background. Because of the air raid sirens (one of which occurred while treating a patient and thus necessitated a hasty dash to the in house bomb shelter) I didn't linger around Tel Aviv to grab even a quick bite of dinner and when I arrived home to the village I hurried to his mother's house to see if I could do something to alleviate his discomfort. 
I have been blessed with certain abilities to be sensitive to the origins of discomfort others feel and so as I was saying hello to Segev upon arrival, (and he smiled firmly as his eyes lit up before returning to complaining) I instantly felt that his left sacro-iliac joint was out of place as well that he had air which needed venting. The joint manipulation didn't go easily this time, necessitating a different approach, which immediately released it, causing a big smile and some loud vocalization. I continued to examine him and while I massaged around his lumbar spine he gave me a dreamy, contented look, that filled me, for at least that  brief moment, with tremendous pride.

November 17, 2012

Defining some concerns

I’ve been reading William Peace’s blog for some time now as well as Louise’s blog and recently they wrote pieces which seem to me to be connected. Peace describes his frustration and yes, anger, at not being seen as an equal. Because for many, perhaps a majority, looking at a person in a wheelchair causes their psychology to look for a solution to the fact that they are not the same, yet consensus thought tells them that they should be accorded equal status. What lies at the heart of this is the inability to see a disabled person as being the same as them, which is actually the case. As we have tremendous differences, thus we are the same.

This dichotomy is resolved by seeing the disabled as people in need of help. They are given that help because they need it, correct? And in giving this help we can add to that sense of worth which has obviously been eroded by the fact that they are disabled. Or, are they the same person, more or less, who want to get on with their regular lives with a somewhat different perspective and ability? When someone like Peace changed from being bipedal to ‘chair bound’ did their personality also change? Their ability to think and interact? What really changed? I believe not much, except for what society imposes on such a person. That may sound like an easy scapegoat to hang blame on. Society is at fault. But it’s just a word, a description of consensus opinion. In the end society is influenced by many factors and is made out of people’s behavior and opinions but mostly, anthropologically speaking, by what people don’t do. If a way of thinking is implemented and we are not even aware of it such as cultural bias, or perhaps the good example in the special needs community the campaign to eradicate the use of the word “retard” as nomenclature that saw a crescendo over the last year, change is impossible. Thus the need for a different way of looking at things, which Peace and many shout from the rooftops, must start with individuals.

An anecdote that Peace shares about changing a flat tire and being offered help, despite that he didn’t attempt to wave anyone down showing that he felt confident he could do the repair by himself, shows how the perception of a wheelchair carries with it the innate sense of inability. Peace rails against this kind of thinking, which I believe to understand; it condescends because while the intention is good it is also very misguided.

In Louise’s piece she asks if successfully advocating for the acceptance of difference (disability) doesn’t require a proprietary lexicon, not only in word but in way of thinking.

What isn’t needed is some complacent catch-phrase like, perception of difference is evolving. But does a more evolved way of looking at our differences requires a new canon of words and phrases? Do these things go hand in hand? Probably, as an anthropologist, William Peace could answer that question. Did civil rights movements in France or America, revolutions in South America, have their own jargon and catchphrases? From a first look it seems to me that there are also generational colloquiums, which represent the perspective of a known concept but in a different context.  Should there be new meaning applied to old concepts to shape people’s understanding or introduce newspeak to sweep out old perceptions? Because what is needed here, in order to procure a better relationship to the special needs or disabled segment of society is nothing short of a massive shift in how we view our coexistence.
In today’s world of electronic medium social change appears just a tweet away, while the truth is that such fomentation builds over time until the atmosphere of change becomes the change itself.

Will the masses be swayed to perceive ‘disability’ as William Peace envisions it? Or as special needs parents who advocate inclusion demand? True change, the deep change of a paradigm shift, happens when the need exists and carries enough momentum. A momentum that is often fueled by outrage. Velvet revolutions are rare; change seems to be more and more violent in nature around the world. Some claim societal values as a whole are eroding and the first victims, as aptly seen in the UK, are the values of tolerance towards disabled, compromised individuals. The likelihood of moving from that handicapped view of disabled to simply an accepted difference is becoming smaller, as a shift in power structures solidifies utilitarian world views. Are we moving toward a ‘the strong will survive’ causality? But, haven’t we been there already and isn’t it time to move toward an egalitarian world view?

Just as there are vast differences in how we perceive, how we walk, what foods we like and what our abilities are, we will not see some kind of unification theory of societal values. At best we will see what we already have, that the law of averages, a kind of mediocrity, is the essence of communal living. To add gasoline to the fire, as a species we are driven to push the boundaries of our physical environment, squash previous ‘impossibilities’ and we laud extreme athletes. This adulation of very extreme sports which kill and maim daily is of particular worry to me.  And then we nod appreciatively when we see skydiving wheelchairs and the special Olympics, because they are involved in activities which mimic those of the adulated.

A few years ago there was a story here of a man who stopped by the side of the road to change his flat. He got into his wheelchair and proceeded to change the tire. It was winter, but the kind of winter you have in Israel or California, cold but not freezing. He left his cellular in the car, which was standing on the muddy shoulder of a small byway. Apparently he slipped from his chair and in the mud was unable to clamber back. Perhaps he slid a little ways away from the car. The family were worried sick and tried calling the phone carrier to get a lock on his location. They refused and the family waited several hours before notifying the police. As soon as the police were in the picture the phone company revealed his (approximate) location and a search was mounted. By the time they got to him he was pronounced dead due to hypothermia.

This may sound like exactly the kind of rebuttal story a wheelchair bound advocate dreads to hear. Interestingly it may be due to poor circulation associated with paralysis that hastened the effects of the cold, leading to the man’s death. But here’s the rub, if the family had responded sooner with a plea to police his death would most likely have been prevented. More so, anyone can slip in the mud, hurt themselves, lose consciousness and perish. Living in Canada I recall the story of a woman who went out of her home in a snowstorm to the convenience store, not more than a hundred meters away. Young and healthy, she became disoriented in the blinding snow and cold and wandered off, found dead the next day.

Two days ago I went in for a rare visit (being the hermit that I am) to the convenience store here in the village and the owner, who always enquires after my son’s wellbeing, told me of his brother in law who had done his annual physical, replete with expansive tests, a few months prior. “You’re healthy as a horse” the doctor proclaimed. Two weeks later his skin color changed to yellow and a week after that his wife, a nurse, took him to hospital where he was diagnosed with leukemia. A partial match was made with his sister’s bone marrow but the transplant didn’t take. Now, with him bedridden the family life is, to put it euphemistically, in disarray and they struggle to make ends meet. There are mortgage payments, school tuitions and extra medical expenses of course, besides the devastation of the illness itself.

Here, to borrow a phrase from popular culture, lies the golden snitch; without proper support mechanisms in play, whose existence is dependent upon large scale awareness of its need, we all can change into someone, who like my son, cannot function without care. From that frame of mind, of proper support mechanisms, flows an entire world of diversity in care, exposes a disparity between perceived social values and truly assimilated values and with it a better understanding of what we don’t do in society for a more cohesive coexistence.
We are very concerned today with having our voices heard. It reminds me a bit of the wave of independence which swept Eastern Europe leading up to and as after effect of the Soviet Union collapse. We crave recognition. Facebook and the like allow us to take it further and recreate our personas or at least tweak them and the din of cyber noise is rising; values are changing as perceptions are shaped by online experience in much more pronounced fashion than the 1970’s concern over how television is influencing children. Where does popular opinion lie? With popular culture of course. Younger people today are being influenced more and more by the online culture and its most popular exhibits.

Suffering that goes on in care in hospitals, institutes or the home is largely not discussed. Differences, down syndrome, disability from accidents (no wonder there is a culture of ‘regaining normality’ pushed tirelessly) are not mainstream.

So we have to keep on pushing until we can find we have ‘come home’ to the world we know we should really have. What options do we have, cynicism? The, “shit happens” confabulation?