Wednesday, January 6, 2016

Do listen, and stop being mean

In the car on the way to school this moring, the normal bickering of siblings started just as we pulled out of the driveway. It ended moments later with one in tears because another had called them mean. To be fair, she was being pretty mean. I started to think about how we build self confidence, in ourselves and in our children. It's constant and ongoing. That confidence, often mistaken as arrogance by some other adults, many of which are mean themselves, is something that we can control in a world full of things we cannot. Having to deal with mean people doesn't end in childhood. What can I do today to teach my kids that their success and happiness in life will come from the goodness and kindness in their hearts, by doing what they believe to be right and true, despite how it is perceived by others? People will always find  a reason to try to tear you down - jealousy, fear, anger - and the only control that you have over that is in how you respond.

I've been following a fellow ePatient mom online lately. While some might think that our situation is grim, I see that moreso in hers. While many see a hopeless end for her child, she sees and endless hope. She fights valiantly, day and night. She shares her story and her struggles and her strengths, and she is judged by many for this vulnerability. And I see a little of myself in her. Why is it that our willingness to share, to stand up and be seen, to tell our whole story with our whole heart is so intimidating to so many other people? We aren't doing it to threaten anyone. Sharing is our catharsis through honesty.

I mentioned in my last post something about mental health issues in healthcare. I know that its the hot button in CF right now, focusing efforts on patients and their caregivers, and I wholeheartedly support it. What I support more is the effort to find ways to work better together to overcome the very things that cause us so much stress and anxiety, to embrace the value of peer to peer support, to collaborate on solutions for improvement. There's not a person reading this who hasn't had some sort of interaction with the healthcare system, being on the receiving end, the patient side, who hasn't felt judged or labeled or misunderstood by the person providing the care - being labeled (formally or otherwise) as a difficult patient/parent, being non-compliant, having a mental health issue because we simply don't agree. How do we change that stigma, make patients feel more like partners, going in to consult with a subject matter expert but being of equal importance in what they bring to the table, their experience.

A few nights ago, in response to a tweet by Joyce Lee about being a "maker" in healthcare, I tweeted this: This is what I most wish the #cysticfibrosis comm would see, realize the potential of themselves to create change. I bring it up because I got a rather interesting response. An adult with CF responded to me by stating that most successful adults with CF are already doing this. YES! Exactly! The "successful" are the already involved. We are the ones who are connected and who are creating, who are working with our care teams and with our community to learn and share and grow. But how do we show the unsuccessful/others the power of their own involvement & untapped innovative potential? This is what I am striving to learn in 2016. Not just this, but to prove to everyone else, the institutions and the foundations and the whole community the value of these people and their ideas and involvement to the whole system. Its different than how things currently work, its disruptive, but its critical. And I believe we have to start with a greater appreciation for the perspective of the other side. Listen to one another, like really listen. In this great post by Susannah Fox, she so eloquently states, "Test your idea with potential customers and — this is key — listen to them, especially if their feedback is not what you expected."

I turned on the song "Mean" by Taylor Swift for the remainder of the short drive to school and briefly reflected on it with the kids as we turned into school. Your success in life is up to you, and mine up to me. I get to decided my happiness and write my own story. I choose courage and I hope that my kids will do the same. And there will always be some people who are just mean, but that's their problem, not mine.

Here are some of the lyrics for your own self reflection as I encourage you in 2016 to listen more, and to stop being mean.

Mean, by Taylor Swift
You, with your words like knives
And swords and weapons that you use against me
You, have knocked me off my feet again,
Got me feeling like a nothing
You, with your voice like nails
On a chalk board, calling me out when I'm wounded
You, picking on the weaker man
You can take me down
With just one single blow
But you don't know what you don't know
Someday I'll be living in a big old city
And all you're ever gonna be is mean
Someday I'll be big enough so you can't hit me
And all you're ever gonna be is mean
Why you gotta be so mean?
You, with your switching sides
And your wildfire lies and your humiliation
You have pointed out my flaws again
As if I don't already see them
I walk with my head down,
Try to block you out 'cause I never impress you
I just want to feel okay again
I bet you got pushed around
Somebody made you cold but the cycle ends right now
'Cause you can't lead me down that road
And you don't know what you don't know
Someday I'll be living in a big old city
And all you're ever gonna be is mean
Someday I'll be big enough so you can't hit me
And all you're ever gonna be is mean
Why you gotta be so mean?

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