Klippel-Feil Syndrome Blog

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, ” Am I guilty of fighting against my pain?”………………. Rather than fighting against it can we not ask it’s intentions? Get to know it a bit? or maybe even ask it’s purpose?

Living with pain constantly, can lead to intense overstimulation, then overwhelm, so in those moments behind closed doors can we learn to live alongside pain and not against it? Rare mutations can lead to a long road of not being able to find any answers, that means everywhere you look. Whether it be side effects from medications or not being listened to by those that should. Personally still having so many questions to the treatment of those with rare mutations, including those such has Klippel-Feil Syndrome. Is there options that are natural that can help aid this process of being able to live alongside the pain and not fight it? I have had this question for so many years, feeling like I am drowning in knots of shoe laces and earphones. It was getting increasingly impossible to find any medications that worked even a little. And the side effects made it feel impossible to bring myself up for any air.

Is it possible that a plant could guide those in constant pain to live alongside this pain? Could this plant be what some of those with rare mutations and constant pain need?

The pain isn’t you, it is a wanderer passing through, drifting passed the light and dark parts of self. As we experience this reality as ourselves for the very first time, can we remember we are ALL still dreamers, learning something new everyday. Life is not the drama we see online or in fact those we see on tv. Real life has shorts bursts of what you see online/tv, it’s filled with those gaps we have taught ourselves are “boring” periods of time, but maybe the magic is hidden underneath the mat with “boring”. Maybe under that little mat hidden away is where you find your power. By fighting against the pain, are we then the cause of our own suffering potentially longing out our evolution? Or is it indeed part of the shedding of humanities pain that has been ignored for so long because of our need for survival?

Convenience is what we built now, we have to use it to make more time to heal. Whatever happens we have to remember not to be too hard on ourselves. Pain is the visitor, granted it reaches the darkest places of your soul, but it is not the verdict. This pain you feel, it is not you, it is an echo. If you live in constant pain or have Klippel-Feil Syndrome, what if you could live alongside your pain instead of against it, naturally too? But this source is not something the whole of society validates. What if this Green Ally is the one to guide this inner conflict towards resolution from the inside. Can we live with the ache, but not as our enemy but as an echo, as a companion?

I wonder if maybe our perception and our understanding only comes from our own personal experiences. By our own experiences we are creating our own perception of the reality around us. Example, if you feel good you see good. Close your eyes an imagine a beautiful scenic route, maybe on a mountain, maybe by a river, maybe on the beach. Now your perception of that terrain is how you feel. Could your perception of this reality be altered by the way you feel? Pain effects the way we feel right? So could physical pain be changing your perception of reality at lower levels of your subconscious? But is that not the powerful thing, as soon as we make ourselves aware of something we can alter our own perception of it? Could we use this natural Green Ally to guide those in constant pain to a comfortable state of self. So they can experience this reality more softly and supported, not just physically, but mentally, emotionally and one we tend to forget in the western world, spiritually.

If you are out there as a human with a rare genetic condition, including ones like Klippel-Feil Syndrome. Your journey will forever be etched in the stars. The pain you are in is not you, you are capable and beautiful. We are all learning and sometimes rare humans have to exist, which sometimes come with pain that textbooks and doctors do not understand. But it means you can create something new, something beautiful. Forge a new path, create new protocols, learn and communicate with the pain so that it does not rule us 100% of the time.

Is there a reason why natural alternatives are not looked at when everything is exhausted?

Why is a cultivated molecule embraced, while the ancient leaf is questioned?

When did being on a sterile shelf start feeling more safe than a forest?

What if we could safely use techniques that are natural like the green ally or certain breathing techniques that trigger certain neural pathways? All these questions, and lets face it, for every 1 question I have answered it triggers hundreds more! So if there are alternatives, why are these Rare humans being left hanging but only after trying manmade? When a lab-born path fails, what comes next? Are these Rare humans like those with Klippel-Feil syndrome now reaching for the wild because the engineered has emptied everything. Being left suspended in the air on echoes and echoes of aches to drown you. Must these humans be left and dismissed to fall through the cracks before the Green Ally is permitted to listen. Must these humans be suspended at the edge, held in limbo, simply because the societal lens hasn’t been shaped to see this form of pain. Must they endure and wait in the silence until the collective decides it is safe to listen. Must these people wait for the world to catch up and name it before they are allowed to speak and be validated. Nature caused these genetic defects, so would it not be plausible to treat them non-synthetic pathways.

By teaching ourselves to be more gentle inwardly, surely it will give more space for non judgmental spaces for possible pathways and protocols? If these rare humans are finding their way alone, and it is working, then why aren’t these remedy routes being studied more deeply? And if not studied then at the very least, heard. If those marked by Rare Mutation are discovering ways to live with lifelong pain through alternative paths, then why not listen? Why not validate? The markets tongue was meant to serve, to be used as a tool, not to rule. This coin of silence was supposed to a companion. But now, it dictates who gets held and who gets left behind. Modern medicine was built to heal right?…………….The uncommonly genetically mutated are dismissed, not only just for their biology but because they dare to bring their own findings to the light. These beautiful and marvellous humans, their pain is real. Their research and journey is valid. How come the system only listens when the voice comes from the inside of a white coat? Once named monsters and cast out as a societal error. Now we walk with these wounds, carving out our terrain. Making our path through the forest. Experiencing new happenings that some humans have never experienced. They are turning their pain into art! Your voice was once silenced, but now that voice of yours, it is your compass through your own creation of a new terrain through that forest.

Incurability does not translate to invisible, nor do these voices mean any less than the rest of this weird and wonderful civilisation. Refusing to listen, is it not just denying medicine, it erases these beings, their journey and most of all their self-trust. Your voice is sacred.

Can this Green Ally guide these beings into a more stable and grounded sense of self. To forge the path, not against but alongside. To teach us that we can live alongside the pain, but we do not have to suffer. We are all here on this planet, a spinning rock, drifting through the everthingness and nothingness of space and time. But we the ones who named ourselves “wise” are forgetting how to hear the cries. Arguing in statistics, then drowning in the noise, eventually losing all heart to listen. BUT in amongst all the rubble the lighthouse still pulses, in the ache, in the mutation, and hopefully still in the heart of humanity. Can you still remember?

If there is a Green Ally, a natural technique, that could walk beside the wound. Then would you let prejudice get in the way? Can we allow personal bias to drown out these voices from the collective? Denying someone help, is it not just denying ourselves of connection as well? It silences these beings, which is not just a breakdown in society, but a betrayal of the listening we owe to each other to fully understand one another. Is it possible that every time we refuse to listen, we lose the chance to remember everything in what it means to be human? Can we choose heart over hierarchy?

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

Blog post 12