Was sind Layla’s Wünsche? Ein Update und mehr.

Liebe Community, liebe Spender*innen, Freund*innen und Bekannte, _______________________________________ Heute ist der 24. Dezember und Layla wollte, dass ich ein paar Zeilen mit euch teile. Der erste Ausschnitt ist aus ihrem eigenen Buch „Mothlight“, aus ihrem Leben vor der Fusions-Operation, welcher euch ME/CFS sowie Begleiterkrankungen wie CCI näher bringen soll. _______________________________________ „I used to lie in my mother’s room for a long time, dying. And I still am, just now, in my childhood room. But then, I could not be touched even for a second, not be looked at even for a second. I could not look at my phone for longer than five minutes a day. On glorious days, my body granted me an hour of phone use, spaced out over the whole day. And to think that I am considered a bit better now when I could go back to that state with one simple mistake—a tiny mistake. And God forbid—God forbid I pushed my luck. I would crash and not even remember and “wake up” four days later, thinking: I’m still here? Why am I still here? They have a pill for everything, but they do not have a pill for P-E-M—a pill that would save us all from the chains of this disease that keeps us locked up like abandoned dogs, like prisoners. But even prisoners get to see the light. If they’re good, they even get time outside. They can read and move their body. They can walk around. They can tolerate sounds. They do not die if pushed too far. Because you have to understand that if you push too far, you die. You die, you die, you die. And I came close to that so many times that, for many days and months and years, I’d wished to be dead rather than to lie here, every single day of every single week of every single month and year. In darkness. In silence. With no hand to hold and no visitors allowed. And you have to imagine, oh, this is so sad even for me to think about—I used to forget the sound of my own voice or the sound of my mother’s when my body just wouldn’t allow me to listen or to speak when it was just too much. And you have to imagine, my mother lives right here with me, in this apartment. I would hang on to the thought of hearing her walk sometimes, when it was really bad, when I needed to know that I still existed. For a long time, I clung to the idea that that if I died, I wanted to die in my mother’s arms. That I had approximately 10 seconds where she could lie next to me and hug me without me crashing. When she wheeled me back from the toilet to the bed, I would fall onto the mattress and lie there for hours, waiting for the paralysis to go away—being aware of it all, knowing I had to endure it, or it wouldn’t ever—it wouldn’t ever stop.“ _______________________________________ Einerseits geht es ihr heute besser, andererseits hat die nachfolgende Tethered Cord OP vieles wieder genommen und schlimmer gemacht. Gerade heilt sie von einer erneuten Infektion, die bei ihr kommt, sobald die letzte aufgehört hat. Sie kann wieder gefüttert werden, dafür nicht sprechen und viele andere Dinge sind anstelle dessen schlimmer geworden. Nicht mal im Traum könnten wir sie jetzt auf einen Rollator setzen und sie ins Badezimmer fahren, in dem sie mindestens 3 Schritte mit Hilfe gehen muss. Das ging damals noch, heute lange nicht mehr. _______________________________________ Diese zwei Ausschnitte, aus zwei Büchern, möchte Layla auch mit euch teilen, da sie ihr viel bedeuten: ________________________________________„I was very often full of rage and despair. I was always lonely. In spite of all that I was and am in love with life.“ • Jeanette Winterson, Why Be Happy When You Could Be Normal? _______________________________________ „There is an ache in my heart for the imagined beauty of a life I haven’t had, from which I had been locked out, and it never goes away.“ • Robert Goolrick, The End of the World as We Know It: Scenes from a Life _______________________________________ Layla‘s und unser Wunsch ist derselbe: Heilung. Dass sie endlich wieder leben kann, unter uns, unter Bäumen, im Schnee, im Wasser, mit ihren Freundinnen, am Tisch sitzend, am Lachen, am Essen. _______________________________________ Ein Frohes Fest an alle, die es feiern, und eine schöne Zeit an alle, die es nicht tun. _______________________________________ Mit liebevollen Grüßen, Sanja Bauer