I am a Bedoon. (Guest Blog from one of our families)

In my country we are called the ‘have nots’ and there are good reasons for that. I did not have the right to go to school, to get a marriage license, to use the regular health service, to have a passport or to work. And this is in one of the wealthiest countries in the world.

But what I do have is a story. And now at the age of 33 I have the confidence and the courage to tell it. I am no longer in my country but here in London.

My destiny as I was growing up looked to be following that of my family… we were happy but aware of the injustice around us. I married my dear husband when I was 16 and then within 1 year my life changed. As we say everybody starts the journey but sometimes the destination changes and that is what happened in my life.

I lost my sight through a rare degenerative disease diagnosed as VKH disease. This happened suddenly and at first I was treated but soon the hospital refused me free treatment and I was quite simply put out in the street. The outlook for my condition was not known and my husband and I were desperate to find treatment. I had never seen my 2 children.

In 2006 my husband and I and our children fled to the UK and we were granted indefinite leave to stay. We were sent to Glasgow where a professor was working on my disease and that is where we started our life outside our country. I did receive attention and treatment although the professor told us it was too late to save my sight but Glasgow was a very foreign place to us! It was very, very cold and our English was not good. We had no family or community around us and we were lonely but our children went to school and life began to take shape.

Then my professor retired and suggested we move to a colleague working near London so we uprooted our little family and came be near St George’s hospital.

There followed a very dark period in our lives. One lovely thing happened – I had another child who is now just coming up to 5 years but within 4 months of his birth I became very ill and after a time in hospital I was discharged but in a wheelchair. I had lost the use of my legs. I was 28 years old.

My husband has never wavered in his love and devotion to me although at times our life has looked very bleak. He had never imagined this would be his life. He worried all the time about the conditions in which we were living away from any support network, at times in one room and at others in a house where we were harassed and frightened. Just close your eyes and imagine what it feels like if you

are alone, in a wheelchair, unable to see and hear somebody breaking into your home. It is completely terrifying. It meant that my husband could never leave me.

But we have found good people. People who see our condition for what it is and give unconditional help. During some of the darkest days we received help to move from outer London to Westminster where it was felt that at least we would have leading hospitals to support me because by now I was suffering mini comas all the time, as well as a community.

We have found both of those but also something else. We found Home-Start Westminster or maybe they found us!

I am a strong person, I have a strong faith but sometimes even I need reassurance … also sometimes we all need to laugh even when there is not much to laugh about!

You can read about HSW on the web site but when it is part of your own story it is very different. I have somebody who is my mother, my sister, my friend. I can tell her anything. We respect each other. She really tries to get inside my head – she never agrees to anything that takes away any of my limited independence, in fact it is the opposite.

I am now at college virtually full time studying English, Maths and IT and I have just been nominated for the student award of the year with WAES. I love learning and hope to take my GCSEs next year. During my college days I have wonderful support and encouragement from my tutors and my supporter – I could not be achieving what I am without them.

Above all my family is loving and caring in spite of the stress under which we live. My husband is the love of my life and my children – I now have 4 – give me great joy.

We do as much as any family – picnics, tobogganing, eating out in restaurants, and we all study very hard with my 3 eldest children doing very well at school.

Where am I on my journey? I really don’t know but now I hope it will be a long journey because I have so much to look forward to.

For the very first time in our lives we are about to possess passports! We are waiting every morning for them to be delivered. Can you imagine how that will feel?

My husband must stay well, my condition must stabilize and my ‘friend’ will be there, wherever we are going.

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