The ALS ice bucket challenge is all over the internet. Lots of people are doing it in half measures (no ice – which I suppose is proof of how cold the water actually is)and some are doing it without any real understanding of the purpose behind it. Such is the power of the internet. We don’t even have to understand something in order to line up to do it because everyone else is.
I watched one of the video’s of a young man who understands ALS from a different view than most of us. Then I spent a night tossing and turning.
I was impacted by the pictures of him tending to his mother. It brought back too many memories of the 3 years my husband suffered before he died. It also brought back conversations we had where he asked me to make sure that I shared his story so that this did not have to happen to any other families. That was kind of how he rolled. He hung on way beyond anyone’s expectations because he was worried about the kids and I. He took his friends out for coffee or lunch to tell them he was dying because he could not bear that they would “hear it” casually from someone else. He wanted people to know he knew he was dying and that he would be ok. He wanted them to know he appreciated them. He wanted his suffering to create understanding and compassion and maybe even force changes for other Acute Intermittent Porphyria Sufferers.
And then he died. Continue reading
Death has been a common theme in my life. Even as a child, I was exposed to it far more than anyone could have imagined for a little girl living in a country like Canada, born into a life of privilege.
It made me become very introspective about life.
I am a voracious observer of people.
Too often it seems someone passes and after the funeral and all the rose coloured glasses have arrived in the mail and everyone is wearing theirs … the deceased becomes this amazing person they never quite were. Of course we should remember the good things, of course we all deserve the love and memories of our families and friends when we are gone. But when that canonization of the deceased gets in the way of seeing the people who are still there, I find it incredibly sad. Continue reading
We don’t know the purpose of people in our lives. Sadly, it is often down the path, far away from them, that we finally get that what they did for us was a gift. Even more sad is that it is often too late to then say anything.
I have come to understand that life is precious because it is limited, it is short – no-one gets out alive. Nothing we do here, no matter how important and awesome anything else may seem, is as important as is our ability to connect with others. To love and be loved. There is no such thing as too much love. Anyone in your life who seeks to limit your access to people who love you, is not someone you need in your life. Continue reading
My pet goldfish “fluffy” was very special to me. He was much much more than just some pretty fins and some scales.
In a landlocked wheat field of a world where almost every other animal was routinely herded with a horse, a tractor, or whatever humans were not combining or picking rocks . . . he was refreshingly different.
For one thing, he blew bubbles.
And he was a great listener. Continue reading