Now that my right eye is getting better, my left eye is offended that it has had to do everything on its own for the past few weeks. And it looks like this:
Right eye 31.12.2024
Left eye 1.1.2025
On top of that, my left ear has been "closed" for weeks. And my world looks like this...
In the morning. That brief phase between dreams and reality. For many, the moment when you open your eyes, take a deep breath and greet the day. For me, this moment begins in absolute silence, in darkness and a physical captivity that goes far beyond the physical. It is a daily, tenacious struggle, a hovering between the will to break free and the painful realisation of how far away this freedom actually is.
When the first rays of light hit the snow on the trees in my garden, the world is cloaked in a bright white. But this light, so pure and full of hope, remains hidden from me. Sticky eyes, encrusted with secretions, pus and the seemingly endless attempts to bring relief with NaCl rinses and medicinal ointments are my daily companions. It feels as if the world has decided to exclude me from its sight. And I, trapped behind these impenetrable lids, see nothing. Only white.
The world around me is not only blurred, it is also quiet. My left ear has been closed off for weeks as if by a thick curtain. Despite cleaning and removing black dirt, it remains mute, deaf to the sounds of life. When my head, which is often tilted towards the computer, no longer receives any sounds, silence becomes a tireless companion. It's not the kind of silence that brings peace, but the kind that reminds you how isolated you are.
Locked-in syndrome is not just a medical description for me. It is a condition that reaches its cruel climax every morning. Trapped in your own body, unable to command your eyelids to open or your ear to listen. It is a dance between light and darkness, sound and silence, movement and rigidity - and I am the spectator of this spectacle, not the director.
The worst thing, however, is not the physical limitation. It is the knowledge that you understand everything, perceive everything, feel everything. Every snowflake that falls silently outside, every scratch of the crusts on your eyelids, every echo of your own heartbeat in the silence. And yet you can do nothing. Not a word, not a sound, not a gesture.
The computer used to be my gateway to the world. Today, it's a challenge that pushes me to my limits every day. The words I want to type seem to refuse to reach the screen. Writing becomes an arduous test of patience, where every letter is a victory and every line a marathon. The world I'm trying to reach through it feels so close - and yet remains so far away.
But despite all these challenges, there remains a small spark of hope. It's the memories of days gone by, the love of the people around me and the irrepressible will to carry on. Yes, the world may swallow me up in its whiteness, my body may hold me captive, but my spirit remains free. And as long as my spirit can fly, I will find a way to ignite my light in this darkness.
