Klippel-Feil Syndrome Blog

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 the grief and not letting it go. Will grief ever end? There is so many forms of it, the grief that clings from those lost to the next world. The grief of parents still breathing but not part of your support system. The grief of having an incurable genetic defect. The grief of loneliness. Even the grief of just thoughts, the thoughts of losing the ones that actually care. This grief ricocheting into a billion different questions like, Will this grief ever end? or can it change shape? By suppressing this grief, what happens? Where does it go?

The grief doesn’t suddenly just disappear the longer you hold onto it. It stays with us in every cell, every breath. And if not addressed, will then become genetic lineage, passed down grief to those children who will eventually be running the world and society. This grief claws itself into the body and turns it into physical pain and disease. When it is our time and we choose to start healing we are decoding the silence that now consumes every part of your being. This is a lighthouse, you are not alone, I write from the frontline of human society. Not to centre my story but so you can centre your own.

Denial, a form of grief i found hard to process. Pretending everything is okay while your body is attacking itself through pain, memory and experience. I am not out of the denial, and I am coming to terms with that it is okay. But if you were brought up gaslighted, could that then cause self medical gaslighting. Gaslighting ourselves out of denial that we are incurable. This then can causes more anxiety about health, because the journey up this point has not been anywhere near the light. So by finding our own light, can we climb ourselves out of the denial?

How you are treated, becomes how you treat yourself. If you grow up in a household shaped by narcissistic distortion, you learn to gaslight your own body, rewrite your symptoms and question your own truth before anyone else has the chance. When you finally receive a late diagnosis, when the incurable is named. It does not feel like total clarity, just more fog in some areas. It feels like a deep dive into the sea of denial, head first. Because denial was the language of those before you, the gift passed down. But what if this gift is no longer wanted or even needed. What if finding your own light is how you climb out, not to be cured, not to be redeemed, but to stop disappearing into the silence of those before you.

Can we change it? There was no guidebook passed down, only a set of rules and regulations, written in the very stardust of our being. Etched into our genetic code by trauma, then reinforced by narcissism. No clarity taught, just survival. They did not offer light, only the shaping of silence into our very cells. Experience becoming the only compass, because the truth could no longer be written by them. The rules they follow, still being carved into genes, into gestures, into the way your own experience and symptoms were dismissed before even being named. These beliefs and behaviours are no longer sacred, we will no longer place these ideologies on a pedestal. They can and will be re written. Not to erase the lineage but to honour it, and then to end the inheritance of distortion and self-denial.

What does it feel like when you finally find your light? It may feel wobbly, but that is not you, it is the empty space we now have to fill. Teach ourselves to hold it with strength, integrity and our own truth. What old reflexes can you witness while trying to hold your own lighthouse? Maybe you see shame? Maybe you see negative thought patterning? First step, analysis. Can you witness your own thoughts about yourself without getting involved or having an opinion? Sitting with yourself, no judgement. Just simply witnessing yourself exist. Now what thoughts do we align with? What thoughts do we NO longer align with? We say thank you to those experiences of corrupted wisdom, but now we rewrite our belief systems from the lighthouse and not distortion. No judgement. Just us, ourselves experiencing pain through a new transmission. Maybe we can get to a point where our pain doesn’t feel shameful, but empowering.

Most ailments that are curable, you can move on. By following a process that has been tested again, again and again. But when it comes to incurable diseases, there is no moving on from the pain itself. You can heal, you can move on from those experiences that affected the way you saw yourself. But what happens when you follow that journey, to find out at the end of the tunnel the pain will still be there and maybe even slightly more deterioration. These rare genetic experiences that are found in no textbooks, these are the signals of the humans who are dealing with the incurable. To heal from trauma to find yourself still in pain. But maybe by changing the way in which we see our pain, by questioning negative thoughts towards ourselves, we can alter the way we experience this pain?

This journey is not a cure. This is a reframing. maybe a way to walk alongside pain, not against it. A way we can finally reclaim the tunnel as part of our map. Perhaps this pain is not the villain, but a witness. An echo that reminds us, were still here and our truth matters.

To those of you that still carry pain, your healing is not invalid. Just because the aches and pains still reside within you. You are not broken. You are sacred. And if the pain stays? What do we do then? Well then perhaps we can build a life for ourselves that is not in spite of pain, but as a part of us, a piece of us that we walk alongside. No judgements, just witnessing. Maybe that is quiet healing.

What if this pain is not something we escape from? Perhaps it is the strongest part of ourselves, which teaches us to follow in peace.

© Crystal-Lily [2025]. All rights reserved.
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This is lived research. Respect it accordingly.

(POST 10)