August 27, 2010

Don't feel sorry for yourself

This post was edited for clarification
Feel very, very sorry for yourself.  I would like to start a blog where every entry reads the same; no one can possibly understand what it is I'm going through.  Then every other person would also have a blog and write exactly the same thing, for every entry, every day. Somehow this would be the great equator and then we could all just forget about this nonsense, our troubles.

What does this mean? It means I'm not connected to the world I think. Oh I know there is a world out there. I interact with it every day in the myriad responsibilities I have besides Segev. Work, two other (teenage) children, two exes, terminally ill mother, no sleep for twelve years, the list is probably as long as yours.

But I don't want to interact with anything else besides that; laundry, bills, car tune-ups, parking tickets (yes, on a handicapped car!), computer meltdowns, parent meetings, in short every other inconvenience known to man.  I suppose if i didn't see them as inconveniences my outlook would somehow be brighter all together, chipper you might say.
I have my moods. Most of them are astonishingly good. Some are scary. How much can a man contain himself? I don't own a television. Some say that makes me more isolated. I live in the country in a small village, though pretty close to several cities. I see myself heading towards hermitage, quite seriously. After the kids are on their own, after Segev. Truth is I am already a hermit. I sit in the house and contemplate Segev.

His pain and suffering is so overwhelming i've had to shut most of it out. At least when I am not with him, which does not happen very much. I have no respite in the form of someone who comes to help, no partner to shoulder the burden, no social worker who comes to check, no education system that even knows Segev exists, no doctor who has even once in twelve years called to see how he is doing.

Now don't think that I've gone around alienating healthcare professionals. At least not on purpose. Well it is kind of a hobby of mine actually. "If you can't stand the medical scrutiny then get out of my face" kind of thing.

The one question i always receive when meeting with a new doctor, and I've gone through dozens, is "are you a doctor?". The question is not facetious. They really mean it because I have been trained and practicing naturopathic medicine for a long time and have worked in hospital and have educated myself. I began by saying the truth, "No", not a licensed physician. Then came, "Yes" talk to me baby. Try it if you really understand your stuff, you instantly go from "hysterical parent" to "long lost brother" and are privy to information the doctor has no right sharing with you.

Now i'm not asked this question anymore. The doctor's I have know me and give me respect. Some see me as equals, some just go along since their knowledge is limited and some like to think that since Segev is still alive he must be ok. No need to search, no need to pay attention or think, either he's fine or it's all under control.  I bet you have geologists who feel that way about volcano's too.

I have a doctor who makes me wait, with Segev. He needs physio. He needs his ketogenic meal. He needs inhalation. He needs to wait.  Even i understand that if you alienate the very system which you need to survive you are biting the hand which feeds you. So I cajole and bedazzle with my knowledge and concern. If I could bleed for them right then and there, I would.

The bleeding is internal, hidden away though and no one wants to know those intimate sufferings. Deal with it. I wonder how many years i have lost because of Segev. I'm not talking about the years with him. I'm talking about how much the stress has shortened my life? Oh that's ridiculous Eric!  And yet those in my situation, like some of the readers know exactly what I'm talking about. It doesn't matter of course. I wouldn't change it, can't change it.

And now i can hear the trumpets of my salvation, loud and many in number: "Eric you are amazing, no other parent would give their lives like that. No one decides to keep such a child".   Trumpets of doom.  As long as I don't believe one word of what they say I will be alright, i tell myself.

There is a place, called "The holy heart". It's run by nuns and takes the most extreme cases. Parents drop off their child. They visit on weekends. Or not at all. The kids die. That is oblivion, that almost anonymous death. Where is the meaning in that?

"In a world of seizure and pain, what little bit can he possibly Gain?
Yet we gain from the knowledge that would his life never have been,
What, in God's name, could we have claimed to have seen?"

The nuns truly are doing their best. When i met with the pediatrician who oversees the place, a professor with high standing in the local government, he tried warning me of how difficult it would be, as Segev gets older. The burden, the fatigue, lost work. Watching him suffer. Knowing there was nothing i could do.
So I answered him truthfully but without hesitation, "Professor, I have two other children. Do you want them as well?"

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