the joy in what you do
I'm going to start writing this and stop when I think I am finished. A good story should have a beginning a middle and an end. The funny thing about life is it is all "middle". Most of us don't remember the beginning, and if you are reading this you haven't got to the end yet...lol.
In April 2006 I posted my Bio, here is a link to it:
http://www.strokeboard.net/index.php?autoc...=si&img=912
I wrote it as requested by Lin and a few others. We have a lot of Survivor bios but not a lot of Caregiver bios. I recommend everyone reads the bios as like the blogs they give a real insight into the lives of people on the stroke journey.
You can read about our life in the past couple of years by clicking on archive on the right hand side of this blog page and reading blog after blog describing our life. In my blog you will read about our family, our support people, our everyday ups and downs. You will also read of those moments of frustration, joy, despair in fact all the emotions common not only to caregivers but to most of the human race. A lot of it is couched in light-hearted words that sometimes belie the strong emotions that I am feeling as I write. It is not that the blog is not real it is just a more clinical and sensitive rendition of life than I would probably give you if we were talking face-to-face.
We all think that because we are involved in the stroke journey we are special. A stroke is just a traumatic event, a brain injury. It often seems like an irreversible event, one you get used to but never get over. I realised that today when we were at our stroke suport group. We didn't have a guest speaker so a few people got up and talked about their lives. I have noticed that a lot of people say their lives had been ruined by their stroke, very few talked about the joys that had been brought into their lives by the stroke, today a few people did just that. Like here they thanked people for their support and said what a differnce it had made to them.
This started me thinking about the last eight years from that point of view, what have we lost and what have we gained? I think you know what we lost. A lot of you have lost the same things. We lost our jobs, our incomes,our mobility (Ray) our freedom (me), our future income, prospects, our ability to earn our own living, pay our own way. With this we also lost that trip around Australia we had planned, the apartment on the north coast etc. So we lost a lot of what most people think of as being central to their lives.
But we gained so much. Patience is no longer what I seek but what I have. I have patience with Ray when his mind or his body lets him down. I don't mean I have patience every time he has an "accident" I mean overall. I have patience with his slowness, his memory lapses. I have patience with myself when occassionally I "lose it" with him. I know this is not the end of our relationship it is just a single incident and tomorrow I will try to do better.
I have gained time, I don't work apart from looking after Ray. I do work inside and outside the house, I do all the housework, all the cooking, cleaning, ironing, gardening etc. But I do it at my own pace. I am my own boss. I decide what time I devote to which task. Okay, maybe that is not true as one of those "accidents" usually gets in the way of all my plans, nothing like a large load of washing just when you want to do something else. But one thing about all of this is that it does give me some sense of freedom. It wouldn't appear to but it does. I still feel as if I have some choices in the detail of everyday life. I am "queen of the house" something that would not have happened if Ray had not had the strokes and we had not had an early retirement.
Ray has freedom to sit in the sun, he sits in a comfortable chair on the front verandah. He says :"this is the best thing I ever did" and he means it. It is as if he prepared a special place for a future time in his life. Every man needs a special place and the front verandah is Ray's. He goes there whenever he can unless the rain is beating in that way. A part of every day is spent there. I go out and join him for coffee, I have a read sitting beside him sometimes but mostly he is there on his own, it is his place. It is the best place to see the neighbours come and go, to wave to those who know him or those who just wave to the "guy who is always there". That gives him a feeling of still being a part of ongoing life.
We have learned to pace ourselves, we have learned the purpose of routine as the framework for our lives. I admit that we are no longer spontaneous and I wish we could somehow get back to the stage when we could just "pack up and go". A picnic, a trip to the beach, even a few days away would take hours not days and weeks to plan for before the strokes. But a stroke survivor who needs a wheelchair, medication, aides and special equipment is not real portable. I do miss that now. But the routine itself can be pleasant. A cup of coffee halfway through the shopping trip, bumping into friends and then standing having a chinwag is very enjoyable. Okay, okay I AM one of those people who block the aisle (and I know people hate that) but who cares? I am retired, right?
So I want you to think about the JOYS of post-stroke life in your household. We have to deal with the woes, the falls, the continued ill health, the lack of progress etc. but do we count up the laughs, the cups of coffee we can now share with our partners at a leisurely pace, the phone calls we are at HOME to receive? Do we think about those who have helped us and still support us? Do we rejoice at the friends we have ? And those new ones we have made because we joined Strokenet? I never would have gone into chat but for the fact I found this site. And then, perish the thought, I would have missed out on getting to know all of YOU. Think of that.
That old Sunday school song: "count your blessings" is replaying itself over and over in my head. Count your blessings or your joys - a roof over your head, a pillow under your head, bread on the table. Look around, there are a lot of things still in our lives to be thankful for. Count your joys and not your woes for a change.
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