For far too long, we’ve had far too many meetings of professionals involved in my daughter’s care. She needs numerous medical appointments, but we also waste a lot of time talking about the things they think she needs. We spend even more time talking about what the rest of the family requires, especially myself and my wife.
They call us many nice things. Tell us that we require help and support, and then some more charming things. It’s all very pleasant. The reality is that, in their professional opinion, we can’t continue the way we do with little to no social care and compare us to other families in similar situations.
I am used to this by now. For many years, I have heard how we do “an amazing job” and that it “must be so hard” with what we go through. Which is lovely, but the truth is we know no other way. Lucie was our first child, so we’ve not experienced anything else. When others tell me I do more than I should, and that the situation we are in is hard, I get confused.
The words of Zen teacher Charlotte Joko Beck in Death: The End of Self-Improvement always rattle around my head.“it’s only unbearable for as long as you’re under the impression that there might be a cure” is the best explication for our continued ambivalence towards change. Nothing will ever improve, there is no end to the way our life is, so there’s nothing to lust after.
Perhaps if we had experienced a different life first, our outlook would be different? A friend of mine who has cereal palsy explained a similar thing to me when talking about his world view. He’s managed to achieve a lot in life and run his own business with a positive mindset because he’s lived with difficulty since birth. Individuals that have not experienced the same and have their life changed through an accident or illness often do not share the same mindset.
Don’t get me wrong, there is nothing wrong with asking for help, that is not the point I am reaching for. It’s more to say that the way I view things is directly related to my experience in life so far. Situations that others may perceive as hard or difficult do not seem so bad to me – mainly because there is some comfort in knowing that there’s no solution possible.
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