A CHILDHOOD DREAM

I have a life long contract with hospitals. This is a nonrenewable kind of contract. It doesn't expire for as long as I breathe.

I don't particularly like this contract but when your are diagnosed with a life long condition like Sickle Cell Anemia, you really do not have much say about it and so, you find a way to get around it to make the most of your experiences visiting this unavoidable contract whether when you really need the services or you are there to do check ups and follow ups to ensure your system and organs are still very much useful and working.

And so, at this young age, when I came to understand that like it or not, there's no avoiding the hospital with my condition, I started mentally painting pictures and trying to make the hospital experience better.

So each time I was rushed to the hospital, I could tell myself  I was heading to my favourite 'rest house'. I considered the Doctors and nurses moving around with their crisp white coats flapping as they pass by  as the best trained staff to take care of me while I am in this  'rest house', and the smell of antiseptic was seen as the exotic smell of a beautiful rest house surrounded by well made beds with crisp white bedsheets.

I had to let my imagination soar to make the hospital trips bearable. Fortunately, I had many excellent Drs and nurses to take care of me and nurse me back to health. It was indeed a rest house.

It was while on these numerous hospital stays that I had this tiny idea to one day become a Dr or build a hospital.

You see, while my hospital experiences were generally good especially too with a strong family support system around me, not every sickle cell warrior had such good experiences. The cost of living with sickle cell is heavy... extremely heavy in every way possible. Many struggle to afford the barest medications and yet, access to health care for people with sickle cell is not free. 

The overwhelming financial toll is one of the many reasons some parents sadly abandon their children with sickle cell. Often times, even when these parents wish to fight for their kids, the indifference of some health care professionals would lead to inadequate care with far reaching consequences for the sickle cell warrior. Access to affordable and quality medical care remains a huge challenge to persons with sickle cell and it is even more so in most countries in the Global South.

My childhood dream was to become a doctor and build a hospital with a focus to sickle cell care and research. I didn't grow up to become that doctor, but the childhood dream didn't die and these days, the dream gets stronger and stronger.

Participating in Mobility International USA (MIIUSA)'s Women Institute on Leadership and Disability (WILD) program in Eugene, Oregon, USA, was the first time I ever gave voice to this dream. When we were asked to say our power statements, I felt out of place. Everyone was busy talking about Gender Based Violence, improving the lives of persons with disabilities amongst others and I came with 'My dream is to build a hospital for persons living with sickle cell'

It was not easy to voice that out and yet, that has been a life long dream which has become even more stronger since I started my advocacy journey.

I don't even have a piece of land, neither do I have the means to buy one and I honestly don't know how I will come around to achieving this dream but still, It grows stronger by the day. As I carry out my advocacy journey, I have in place short, reachable goals mostly aimed at improving the lives of persons living with sickle cell but this focus of a hospital dedicated to sickle cell care hasn't changed.

It has often been said that if your dreams do not scare you, keep dreaming. This is a dream that scares me because I don't know how to go about it without the necessary resources but still, I dream on. 

Maybe during my life time, I will see this dream materialize and people with sickle cell who come there will finally be able to get the best possible affordable care ever. Maybe someone will carry the baton forward and see this come true.

Until then, we keep impacting, one sickle cell warrior and goal at a time.