Monday, 8 October 2018

Paying the Piper (or the cost of remembering)



I’m sitting here, trying to write a couple of presentations for a conference I’m leaving for in a few days. As per usual, I’ve left things too long for my comfort and I wish I did more earlier. To be honest, I’ve always left things a little to the last minute – there’s no changing who I am, I guess.

But these presentations & talks that I do about our experiences through the health care system, sometimes I think I leave them for a reason. I carefully craft my message each time, and each time I go through my photos, and our history, looking for the messages I need to leave the audience with. And each time, because the lessons learned, we’ve learned through hardship, the photos bring me back to the moments I was there. And that hardship has been hardship from parenting a rare disease journey and witnessing our son’s pain and distress. And I can’t change any of it. I can only remember it.

And I feel it all again.

Does the audience know this?

Do the organizers?

Do I when I say ‘yes’?

I do this because it’s important. I do this because, I feel like I can make things better, that I can ease the way for the families that come after mine. But right now, as I take a break from PowerPoint, my photos, and my writing, I take a breath and wonder:

Do they know the cost? Will I ever stop paying?

Maybe the day it has less impact on me is the day it will have less impact on my audience. I don’t see that happening any time soon.

Until then, I’ll keep writing. Until then, I hope something that I say, or show, will ease the way for another family like mine.

Ok, back to PowerPoint.

1 comment:

  1. Yes, we re-live the pain, leave a piece of ourselves, keep opening the wound every time we speak..because we know others who are just starting their journeys or, know those who have not been able to speak out are also in pain...alone, confused, disoriented with no map to show the path forward. Our stories provide meaning for us; we continue to learn with each re-telling. And our stories give hope to those whom we unknowingly support. We are motivated to make it easier for others. And, we KNOW things can be better; we can only help to make them better by sharing our experiences. We must never doubt this.

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