Thursday, November 15, 2007


It's been a month since the last blog. Here is the update for those who still read this.

It's Nov. 25 now. Jan continues to make progress in some areas. People who see her once in a while can see the improvements with greater ease than myself or Jan.

She started the 11th medication a couple of weeks ago with the well know struggle with the side effects. We both pray that one day she will just be free from these terrible but useful drugs to control seizures.

Access to neurologists in Toronto is more difficult than getting an audience with the Prime Minister or the Pope. We saw a neurologist at the beginning of November. When we called her secretary to make another appointment, we were told the next available appointment is in June 2008! that's more than 6 months from now. This is what the Minister of Health calls a "good system"! So, in case Jan's struggles become more acute, the only option we have is to go to the emergency room, which costs to the system several times what a regular visit to a specialist costs. Arrrrhhhh! Who is running this province?

Some days are good, I see that Jan moves around and talks almost normally. Other days are more difficult, where I can hardly understand what she is saying. On the difficult days, our communication deteriorates quickly, and the likelihood of conflict is always present. I perceive a hypersensitivity in her to everything I say or do. Almost innevitably, at one moment or another I will be caught off guard and we end in crisis. I say something she takes as criticism or something in the tone of my voice or the expression of my face, anything can trigger an explosve reaction.

These crisis look like this: her voice increases in volume. She starts crying and her words become more scrambled. In less than a minute I hear only incoherent sounds, a single sylable repeated many times, just like when an old CD gets stuck on a scratch or dust. She then will fall to the floor wherever she is and continue her crying lowdly. I've learned to put aside my emotions and look at her safety and comfort. But no matter what I ask or tell her, there is no response. There is no use for explanations. That can only happen after she "comes back". Eventually, the sobbing will stop and she will stay there, on the floor sometimes for a half hour, with no energy left, semi-unconscious, like a rag doll.

I can't describe my feelings when I see her in this condition (sadness, loss, guilt, anger, impotence, or all of tehm at the same time). I feel responsible for all these crisis even though I know I am not. But that is the deal, and this is life in real time. It has a tremendous effect on my psyque. I realize I am struggling with time and a sense of direction more and more these days.

On the bright side.... what side is that?


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