Hello…

I don’t know if this will land anywhere, but I felt like writing it down anyway.
Just me, telling parts of my life the way they actually sit inside my chest.
Not polished, just… what it was.

Who I am now

I am a 20-year-old girl, on the brink of life and death, bedridden with end-of-life care and multiple illnesses
Someone soft around the edges
 Someone who stopped pretending strength has to be loud
Someone who lived through too much, and somehow also through enough beauty that it softened me

Childhood to now (skip this, it’s long boring haha)

I grew up as a child who , because of complications ,began life too early — born without breath, already fighting before I even opened my eyes .

Always a bit fragile, I was quiet and curious—listening to music, making art, and exploring the world in my own way, often from the safety of my shyness.

And yet, alongside that, I was driven to be an athlete, training hard and living hard, while loss and chaos sat quietly in the corners around me .

I was Ambitious in a way only children who learn survival can be. I pushed my small body far, sometimes too far, and at fourteen anorexia almost took me.

But even then, I collected tiny joys like treasures: sunlight on my skin after training, warm summers lying on asphalt watching the sun set with music, baking  with Oma, circus memories, Italy vacations. Maybe that’s why my life feels longer than it is — I noticed everything, even when I was hurting.

Illness appeared at sixteen, and yet life’s milestones continued: flying alone for the first time at seventeen, and living independently at eighteen. By the end of nineteen, my body grew weaker, leaving me bedridden.I probably wouldn't be in end of life care if docs would have believed earlier that pain can be endured silently and if I would have listend to my body earlier ,I was agitated about that for sometime but I accepted now that life unfolds ,how life unfolds and I made some special memories during that time .

Now, after months of delicate care, I am receiving end-of-life care , reflecting on a life that kept giving me both beauty and chaos: trauma, loss, illness that pinned me to bed, moments of softness that kept me alive, and the strange peace that comes from carrying all of it — the child, the storms, the dancing , the art, the humor, the grief, and the people I loved and some who loved me back .

Childhood bullet points
	•	Born early, always a little fragile
	•	Nearly died a second time at 14
	•	curious, making art,ambitious
	•	 much loss; some trauma
	•	Illness beginning at 16
	•	First time flying alone at 17
	•	Living independently at 18
	•	Bedridden by 19
	• Since two months: end-of-life care

Though my soul may set in darkness, It will rise in perfect light. I have loved the stars too fondly, To be fearful of the night.”
* The Old Astronomer, Sarah Williams

Some of my favorite memories (because they prove I lived)

• walking through the forest and a deer herd running around me
• participating in circus
• lockdown forest walks
• birthday cakes
•first snow walks at night
• baking with Oma
• long drives with music
• laughing with friends until crying
• lying on warm asphalt with good music and sunsets
• random moments only my heart knows


“To see a World in a Grain of Sand And a Heaven in a Wild Flower Hold Infinity in the palm of your hand And Eternity in an hour“
-Auguries Of Innocence By William Blake

Outlook now / small things I don’t say out loud often

• peace > understanding
• If love alone could heal me, I’d have lived a thousand lives
• I’m still a dreamer
• I would’ve  loved to make a poetry / art book just for myself and kids one day
• I loved life, even when it hurt
• art makes meaning and kept me through
• rain feels like company
• I miss the sea, the stars, vacations, animals
• If I ever had a real job, maybe dolphin / seal rescue center or horse-based somatic therapy for disabled children and volunteering in hospice
• I love chocolate pudding
• trust in small things + slow living

Butterfly Life

A soft life:
brief, bright,
too easily bruised.
But oh—
how it shimmered
-by me

Some random thoughts I would have loved to tell younger me
•be kinder to yourself and your body you can’t chage both things anyway
•people can only see you when you learn to be yourself
• People won’t understand you because they didn’t live through what you lived through, and that’s okay
• Don’t give people too much responsibility for their actions; you don’t know their past
• Be curious, and if you can’t hold them right now, then draw back — not push away — in love
• peace is more important than anything but you also did  the best you can
• it’s  okay that you don’t believe in hell; peace in not knowing
• You can’t change the cards you play with, but maybe the amusement of it
• We can endure more than we think; time softens the edge — but it’s also okay to accept that sometimes it’s just too much and curl up in bed
•accept help as early as possible ; rest is a part of life
• humour about life  relieves agitation and can be trained
• How you feel is valid, but don’t get stuck. Put your emotions into art; bad art is valid
•yes life is unfair but it's unfair to everyone - loss connects us all as does love
• I am not important yet  of value and loved like a star is of value yet there are infinitely more
• Life will never be perfect, nor what I do or say so don’t wait for it it’s what makes it unique
• You can become disabled at any time so fight for human rights
• Love all people (doesn’t mean close relationship with them)
• I will fail  often, and be not always the human I wanted to be; forgiveness is hard but possible
• One moment of life  makes it all okay again
• I am not afraid of dying anymore, I have great peace
•love and wish good to all people equally Or is what we do more important than who we are?

What a life , What a blessing ,I lived

So what is happening to me now? Honestly… I don’t fully know. I’m in end‑of‑life care. I’ve prepared for dying — the goodbyes, the quiet practical things, the soft emotional ones. I decided to say no to life‑prolonging treatments*I still let my caregivers try medications as long as they keep the pain manageable, so who knows how long this earth will bear my feet and my dreams .

Thank you for reading my random  reflection on my life. I don’t have any clever words; everything worth saying was said long before me anyway. I just wish you a little bit of peace today. :)

Huggs to all.
And like my favourite poet said:

“You must not ever stop being whimsical.
And you must not, ever, give anyone else the responsibility for your life.”
— Mary Oliver, Staying Alive

xx