Klippel-Feil Syndrome Blog

journaling outside the box

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Healing in a world but not of it.

Author: kfsjourney

  • Are Klippel-Feil Syndrome Patients Getting Gaslit?

    Hello again fellow human, hope your path is going as smoothly as it can on this strange yet wonderful planet. Today we’re going to talk about help that is helpful and help that is clearly not helpful. Now, it is the 21st century, so when I talk about unhelpful, I mean when medical representatives gaslight…

  • DECEPTIVE COMFORT OR RELIABLE COMFORT: KLIPPEL-FEIL AND PILLOWS

    Hello you! I know its been so long since we caught up. I do hope you are doing well and the pain is at ease. I have been nervous about sharing my own updates, but after looking far and wide there isn’t many of us talking about our experiences, whether that has been down to…

  • First official year of writing. Love to you all.

  • How does Klippel-Feil syndrome affect you?

    Welcome back my lovelies! If you live with Klippel‑Feil Syndrome, and you feel ready to share even a small part of your story, I’d be honoured to hear it. Your experience doesn’t have to be dramatic or polished, it can be a moment with a doctor, a strange symptom you’ve carried quietly, or simply what…

  • Project Echoheart: When Doctors fall silent in awe

    When the world gets overwhelming. What do you do? Do you stand and fight? Do you sit in the silence, or the loudness? How many doctors will stand in awe? Curiosity is beautiful but is there anything after the curiosity? When textbooks don’t cover what you experience. Is it possible humans are less inclined to…

  • PROJECT ECHOHEART: The Water That Walks In Uncalled.

    Welcome back fellow beings. Hope you are all making it through the terrain of winter. When the emotional storm arrives, who do you become? Who are we, WITH our emotions? Are you a rollercoaster? Are you the feeling? Are you the witness? Are you the cause? Or are you indeed the remedy? Has your body…

  • Project Echoheart: The Plant That Walks Alongside Mutation.

    Hello everyone! Hope you are all doing okay. As we head into the darkness of winter, to hibernate and reflect. The mountains can get very dark this time of year, oh and freezing! You have to remember to do those things that make you happy! Lets get into it! Can you ask yourself this question,…

  • PROJECT ECHOHEART: 10,000 Days Of Pain Fossilisation.

    Welcome back fellow earthlings! It has been a while and there may be pockets between posts, some longer than others, but I shall always come back. Today is not a long one but hopefully just as impactful. Okay imagine being 27, but not the 27 you would typically imagine. Being 27 but feeling 3 times…

  • PROJECT ECHOHEART: Grief, Then Healing, Then Grief Again.

    These field notes are from the middle of grief. You don’t need to explain yourself here. You can’t just give yourself away like it means nothing. What have you buried deep, to make others feel comfortable? As humans we are quickly moving towards total suppression of self. This means we are holding on to all…

  • PROJECT ECHOHEART: A Quiet Lighthouse

    Welcome back my lovelies. Today feels different, not chaotic but gently uncomfortable. I am writing because i know there has to be a way to build more connection. I am writing because it is necessary, it is truth and it needs to exist. So this post is a quiet lighthouse, a subtle flare, to those…