Sickle Cell and Young Stroke Survivors run a project called” Behind Closed Doors.” It is a platform that allows children and young people affected by Sickle cell to give an account of how they are feeling. This is my story.
Nana Ossei’s Story
My story begins in 1989 when I was in primary school; I went to lunch, where I picked up a lunch plate with my right hand and as I transferred to my left hand I dropped it, the same happened when I went for dessert, I dropped it again.
In the background, the dinner lady was going spare, thinking that I was messing around or something, whilst my friends and most of the other children there, were very worried about me. My sister and I were taken home by the Deputy Head, who told my mother that I might have epilepsy.
The next day I went to the Doctors (GP) who said to my mother “I don’t know what’s wrong with her but take her to the hospital to find out”.
Later, that day we went to the hospital, where I was diagnosed with Sickle cell anaemia and admitted, and the next day I had a stroke (Ischemic – blockage in the brain) and was comatose for three days.
As I was a minor, the Doctors told my mum of my diagnosis, I did not know what was going on with me, as my mother did not tell me, I guess she was in shock too. I only realised when I overheard two nurses doing their rounds discussing me, saying ‘sickle cell and only she’ll be dead when she’s eighteen’.
Eighteen?! I was only nine years old, Nine!!! Meaning I had only nine years to live?
Back in 1989, the prognosis for someone living a long and fruitful life with Sickle cell was quite impossible as it was not as well-known back then as it is now.
Here I am, on a hospital bed in the arms of despair and the conversation I had overheard was playing in my mind over and over, ‘sickle cell and only she’ll be dead when she’s eighteen’. I asked my mum about this and she said, “They don’t know what they are talking about”. She was right because I lived longer then they reckoned.
Until my first Stroke, I had no symptoms of sickle cell anaemia so when the stroke happened it was literally ‘out of the blue’. The stroke left me with a lot of disabilities and therapies, it affected my left side and I have weakness in my arm and leg, I couldn’t walk, I had to wear a splint on my leg and arm and use a wheelchair for a long time, now I am unable to use my left arm as it is curved and my left foot is shortened.
I was on blood transfusions from 1989 to 2003ish and I hated it especially as I had to have a needle in my stomach every night for 10 to 12 hours to remove the excess iron in my blood.
I want to work!
When I was 18, I began a long litany of jobs, some which I walked away from and others I was sacked, dismissed! It really knocked my confidence and self-esteem.
I decided to do voluntary work, instead of feeling dejected and miserable, so joined Sickle cell and Young Stroke Survivors in 2013. It’s now 2017 and I am still here, I also believe that this is where I will remain, for quite some time. But we were talking about feelings. In 89 after my diagnosis, I felt worried, scared and frightened, I have felt fatigued, angry, and despairing.
But ever since I met Carol and her team, my anxiety has been replaced by joy and hope because I am accepted and SCYSS helps me with everything. I like the family atmosphere and everyone helps me out with little things like opening a crisp packet putting my coat on or off and there is always a chance to have a chat.
I am still alive and will work tirelessly on my rehabilitation with a greater understanding of myself and disability than I did in 1989.
By Nana Ossei 2017