I'm 21 year old student from Croatia and I have had rheumatoid arthritis since I was 12 years old. For long time I was very shy, closed to myself, not lettineg anyone see me cause even I couldn't see myself from all that pain.
When I was a kid my parents discovered I was gifted for music and sports. They enrolled me to music school and judo lessons (defence skills). I played piano for 11 years and I was amazing at it, I was supposed to become pianist or conductor but...arthtritis progressed and now I can't play or conduct at all...
Doctors have forbidden me to play any kind of sports when I was 14, except of swimming and stretching but only for short amount of time (preferably less than hour, my body usually takes half an hour of physical burden). And so I had to give up judo as well. I withdraw to myself and sinked into my own world of despair and pain. My body has let me down and I was only 14 years old, so talented kid with promising future - now just a manufacturing defect with unbearable pain.
I tried expressing myself and telling my parents and siblings how I really felt but no words would come out. Even when I somehow managed to start the conversation about it, I would see their pale faces, bodies crushed under pressure and tremblenig from fear that it could become worse any moment. I just couldn't force myself to tell them, so I wrote it down. I started writing and soon enough I had filled pages with poems and stories, letters, thoughts and emotions. Sitting on the floor under the window in my room with tears rolling down my red burning cheeks, I would write for hours depite the pain and stiffening of my joints, despite tremble in my hand and frequent drop of pen. I would sit in the corner of my room, under the window bathing in sunlight, illuminated by the life and everything it gave me, the good and the bad... I went through a lot and I had the dumbest luck in life, but thanks to all of that - my illness, experiences and most importantly my attitude - I have an amazing story to tell you, wild from start to butt, just stop for a while and listen...
As my body falls apart
I'm losing my mind
To see me as courages
That would be outrages
It's only plain survival
That still keeps me bind
To this game I know
I don't wanna lose but
This time I don't wanna fight
If it's due it'll be alright
I'll try anything and all that I can
To do the best I can and share love that I have
To all that can see me and hear me clearly sayin:
"I'm NOT fine, but don't despair,
don't pity me cause I'll do well,
enjoy your life and start the repair
make the change yourself,
enjoy all that you can,
jump and run, you'll give me a smile"
I'll give you moral support
When you play sport
And fashion advice
If you need to look nice
I'll try to be smooth as I can when I brake the bed news
And hold your hand if you get the worst
If you can get through cloudy days.
my quirks and painful phase
For anything you need I'll be right here
cause even if I try to run you'll catch me soon and near
Lucy Fer
10/08/2017
P.S. If you want to see my story through and find out more about my adventures and dealing with incurable child disease, upvote my post and follow me to see part 2. In comments I'll try my best to answer any questions you might have so feel free to shoot. I have decided to finally publicly post my story so that I could try and change somethnig, maybe someones day and maybe someones approach towards people with disabilities. I hope that one day at least children with JRA(juvenile arthritis) in my country will be able to access the only proven medicine for it which is currently illegal. Even though the use of cannabis oil is exeternal and without any sideeffects, unlike chemicals mixed in a small capsule, and my fellow nationals acknowledge that, there is still no movement and no change happening. I started by changing myself. This is just the beginning.
Enjoy your day!
