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.