Klippel-Feil Syndrome Blog

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 be curious if they have a negative outlook? Is it that by denying themselves of visibility they deny their patients? Knowing rare humans exist, but not feeling the need to educate even on the most basic level. When you hear “ there’s nothing we can do, we just have to keep you comfortable”. But then not totally comprehending the person listening is only 27. To have to spell the rare syndrome to every single human on medical staff within a 20 hour period. Them not even understanding, some filled with curiosity, some filled with ignorance, some filled with confusion with a touch of helplessness. Pain, I talk about this a lot and it’s something that needs addressing, not just the symptoms of pain, the cause and the effects, not just on the body but the mind. Be in pain for long enough and it changes you, not just on the outside but deep inside the soul, the psyche and those darkest parts of self.

Honesty, stillness and sovereignty. If you have a rare disease, speak. Tell them exactly how it is, don’t hold back. Be gentle with your words but always be truth. Your pain is your truth. Not every human connection within the system is worth your energy, you will know this with how they treat you. It’s not you. You are in charge of your body, be still, in your sovereignty. Klippel-Feil syndrome humans exist. It’s simple. If you are a medical professional please listen with little time you have, we understand your time is like gold, but two minutes of your time, still even if you cannot help, then you will know to be gentler if you come across it again. You can tell your colleagues, so if they meet someone with it they will at least know the name.

We are the rare genetically mutated humans; we exist. While some never experience pain, others endure pain so intense it feels inhumane. And when conventional medicine fails, we must keep our minds open to other forms of treatment. Even if mainstream societal views haven’t quite caught up yet, we can’t leave people in the dark because of lack of knowledge or ignorance. By leading by curiosity we can start to lean into more opportunities for treatment.

Going into what is portrayed as a beacon of help and medical assistance, to experience unhelpfulness, silence but the deafening kind, to leave you feeling bewildered, exhausted and confused. Holding tightly on to the strands of wholeness from those who haven’t lost their light. Is it worth losing your connection to the planet for something created without our consent? Life can be intense, but surely that reflection would be best off falling into a metamorphosis, so we are not entirely intense with one another? Surely our softness must come from within. By journeying alongside those who are not so internally soft, perhaps we learn how not to be. If their energy feels negative, why allow it to ripple outward from us, until the lake is filled with pebbles, each ripple colliding, turning the water into a tsunami of negative emotion?

White bright lights summoning hormones to awaken and keep time itself captive in a state of paralysis. Blue hues striking out like blades, feeling like your being interrogated by those faceless and unnamed. The silence of night shatters in an instant blink, as if the corridors ignite from matchsticks of stress, breadcrumbed from ambulance to reception. Souls creating a suction of survival, each one clawing at existence, creating laws of isolation. Is every human out for themselves? Is that how it truly works? Or is there another way?

The lady with the lamp, would she see healing or survival? If she walked these corridors now, would her lamp tremble at the chaos of the human psyche, watching a modern version of perish, is this care? or is this captivity? Nurses with mountain soul hearts, 25 minutes breaks, sleeping for 20 and eating for 5, lovely souls, climbers of peaks now scaling the mountains of cortisol and exhaustion itself. Cheeky faced cleaners braving the dark depths of the battlefield of the most treacherous rooms within. After every battle still having the courage to face another cycle of it all over again, without as much as a gleam, or embrace.

Our fleshy sensitive appearance, is it turning to rock? Are we so scared to be gentle that we avoid it altogether? When we care, they receive it, to care is to ignite a chain of alchemy, care given is transformed and passed on. If care has a frequency, and if energy never dies, then perhaps it is we who evolve the way we care, from within.

© Crystal-Lily [2025]. All rights reserved.
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Blog post 14