My name is Marysia and I'm entirely dependent on others. I can't dress myself, I can't wash myself, I can't brush my hair… without help I can't even eat. This is my biggest tragedy. I'm 27 years old…
What were you doing at my age? Bike trips at the weekend, bbqs in the garden, working in the week, swimming, cinema and meeting friends in a local pub after work? It sounds so amazing. For you it may feel so normal, but for me, it is my biggest dream. Unfortunately, entirely not achievable.
I've had cerebral palsy for 27 years. It has deprived me of almost all control over my body. I can't walk, sit by myself or speak. I communicate with the world using facial expressions, sometimes making sounds that no one understands… A tablet, which helps me point letters of the alphabet with my eyes is the only way I can be understood.
I am fully able intellectually.
If it wasn't for this tablet, I would only lie and stare at the ceiling all day. I'm so glad I have it! Writing even one word is an arduous task, which seems to take infinity. This is one of the few pleasant things that happen to me in my day though.
There's not much going on in my life. I can't go out for a walk any more. I'm cared for by my beloved Mum, who has recently got seriously unwell. She is suffering from painful back and joint problems. Her problems have been caused by carrying me. She can't help me as she used to - push my heavy wheelchair, catch my limp body when I'm falling… I don't feel any physical pain. My mum catches my 40kg body. She's suffering with each move.
I feel enormous pain knowing that I cannot pay my Mum back for the years of her sacrifice, especially now, when she needs help. We've tried to get by ourselves, but after 27 years, I have plucked up enough courage to ask for help.
We urgently need a specialist wheelchair. It would help me to keep my body upright and prevent me from falling, and it would have its own electric power. It would lighten my Mum’s load and allow me to leave the four walls and breathe some fresh air outside. It's been a long time since I've had an opportunity to do it… my Mum and I could go for a walk!
I don't dream about rehabilitation any more. I don't dream about being a normal girl, woman, friend, wife. I dream about making it easier for my beloved Mum. Showing her that even I am capable of great acts.
Summer is approaching… it's so beautiful outside. Blue skies with no clouds. Will I be able to see them eventually?