Most of what you’ll read here is life and fun, with episodes from my past, amusing and serious. But I have an unwelcome stranger lodged in my brain, as you’ll find if you explore my stories. Our destinies are interlocked, but its deadly presence reminds me every minute that each day of life is a miracle. This is my space to reflect on life, and an interactive area where we can share our experiences freely. Without you, this blog has no reason for existence. Carpe Diem!
What am I trying to do? Really. Exactly what? I am trying to connect my past to my present.
That’s in the end what it’s all about.
I have some strange sleep patterns. Well, they would be disastrous if I were trying to hold down a job, but I’m not, so maybe they are simply patterns that suit me.
I am tending to go to bed round 1 AM. I’ve – we’ve – done that for many years, except for a patch after we returned from Melbourne where I was going to bed at 10 PM.
Now, that must sound much more sensible than 1 AM, but not if, after hitting the hay at 10 PM, I’m waking round 2 AM and staying awake till dawn, and then finally getting up because there’s no point just lying there. It’s like ships in the night with family and friends in that case.
So, now I am waking at 4 or if I’m lucky, at 5 AM. When I’m awake, I think about things I want to write about, and then I start to exercise.
I do this because I know from experience that if I get up and start to do anything at the computer, the time for exercise gets lost. And the exercise is critical to making me as normal a human being as possible.
But maybe I’ll come back to that, as I was talking about a typical 24 hour period in my day. If I start to go off at a tangent already, we’ll not even get to breakfast.
So.... three quarters of an hour after exercise, I go to the kitchen and drink a large glass of filtered water, maybe two. I won’t eat breakfast or take food or medications yet because I feel it’s too early. Then, I come here, to the computer. It’s not yet 6 AM.
I’ve learned that if I’m going to write something for the blog, it’s best to be now. My body may be weary after the exercise, but my brain feels sharpest. If I make the fatal mistake of opening my email, or checking the blog itself for comments, or seeing who’s saying what on FaceBook, or looking at my news aggregator, or reading Twitter comments and fascinating new articles they point me to, then hours will simply disappear.
Priorities go out the window if I make that error. I find myself writing to someone when there are other things to do and even, if I were going to write to someone, it’s often not really the person I’d have at the top of my list. It's just the one that happens to be in front of me.
But, if I can just open a blank Word document and start to write what has been going round in my mind since 4 AM, even when exercising, I have a chance of feeling some sense of accomplishment.
So, this goes on till between 7 and 8 AM, when I eat something and take the medications. I may come back to what I’ve been writing for the blog, if it’s not finished. If it is, I do those other things that open the world to me. Email, Blog, FaceBook, Twitter. Hello, world.
Then I may need to sleep. Sometime between that point and nightfall, I will have slept another three hours at least. I am fine after that till bedtime, well after midnight. Evening is really the time we get together unless some daytime activity is scheduled that adds to it. Evening's our time, even if it’s just the pleasure of viewing TV together.
These times of sharing are the most important of all.
So, how did I start this? That’s right. I am trying to connect my past to my present.
You see, on 3 December 2009, a line was drawn between my past and my present. A line etched deeply under my past. The normal evolution of my life stopped, and nothing would ever be the same again.
I would never drive a car again. I would never put a video camera on a tripod and do the filming I loved. I would never play squash again, the game that Tracey and I were playing thrice-weekly just days before. I would never again walk kilometres around town in the afternoons with Tracey and Christian. No more would I do a score of things you don’t even think about. Peeling an orange. Opening a jar. Using both hands to blow your nose with a tissue! Fiddling with leads and cables for computer. Lifting something up. Chopping wood or trimming the hedge. Dancing.
Dancing! A life ago. How did Dylan Thomas put it? A Grief Ago.
Who is my grief, A chrysalis unwrinkling on the iron, Wrenched by my fingerman, the leaden bud
Shot through the leaf....
My life would become a round of medical procedures, and Tracey would have to manage them. All our lives changed forever on that day.
I’m not writing these things down to whinge. It’s just to state a fact. The worst of all the above was, and still is, not being able to jump in the car, go downtown, and do things spontaneously, even if it’s to select some flowers or chocs and bring them home.
Loss of that form of independence; it’s the most difficult to adjust to, after all this time. Well, almost. But we’re not going beyond the almost today.
It’s not all regrets. Now we have more control over the seizures that cost us all these, my struggle has been to win back a bit of what we’ve lost. And in some ways, we’re winning.
Even short term gains are important. When you have the opportunity to fight back a bit, you have to take it, or you lose everything.