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    • Pegeen
      Top reader this weekReading streakScoutScribe
      1 year ago

      A very sad story and a writer’s need to tell it on Twitter just to release his dire despair.

      • Karenz
        1 year ago

        I was glad this author talked about the effect of toxic positivity. As the parent of a child with a neuromuscular disease who survived, that kind of cheerleading which makes the person expressing it feel better, makes the parent feel even more isolated. It IS of course hard to know what to say in so many traumatic situations. Sometimes it’s better just to admit you don’t know what to say.

    • DellwoodBarker1 year ago

      Powerful. Illuminates the shadow and light of sharing Real on social media.

      Personally, based on how the author expressed certain pockets of held trauma still evident I would encourage complete disconnect of FB/Twitter to share the story through independent publishing and plugging in in-person one-on-one in immediate community (which the author has likely done more so , additionally, outside the periphery of this read). As an individual who has not lost a child but has dealt with the Very Real shadow feelings he expresses that remain as residual phantoms Complete Unplugging (from what are more toxic social media channels, personally) does a world of good for thorough cleansing internally so as to re-visit internal treasure places of seemingly lost happiness, etc.

      These passages Are Gold:


      So many people have a desire to help or fix the situation in some way. But they cannot fix it. So, in response to posts, my feeling was and still is: I need you to just be there. I need you to hold my story. Just doing that will help me.

      Just hold my story. That’s such a powerful and affecting notion. I imagine that response doesn’t come naturally to people and that you get a lot of excessive positivity, no?

      I want to preface that I have no ill will toward anyone who reached out and that I have the greatest appreciation for all of it. But there are elements of that toxic positivity around childhood cancer. When Francseca was sick and I was sharing updates there were people who’d say, ‘she’s going to get thru this. She’ll pull through.’ And that can be so isolating for people with cancer kids, because the statistics are so fucking grim. When your kid gets diagnosed you have to say, it’s likely my child will die. And listen, I was caught up in this too early on — staying so positive. But it can be isolating when people say it, because you know the real truth, which is that she might not make it. It’s so very hard to hear that. It just makes you feel like you’re on an island by yourself. It’s just you and the cancer parents who know the true reality.