Lumiere is a Rwandan born blogger currently based in Denmark. She was born with a fragile bone disease. This is a her story. Read the full unedited version on her blog
Early years and diagnosis
I am an African handicapped woman. I was born with a twin sister. We both suffer from “osteogenesis imperfecta” also known as glass bones, a condition which makes our bones very fragile. My mother had no clue why our bones kept on breaking. She thought she had done something wrong. Our legs started breaking when we were just a few months old, sometimes even by merely sleeping. It came to a point where doctors kept us at the hospital, because they thought our parents were abusing us, but even in their care my sister and I broke our legs again!
I was born in Rwanda, but grew up in Burundi because of the Rwandan genocide. While in Burundi, my parents met a Danish doctor who managed to explain our condition. He advised my parents to move to Denmark to access quality health systems so that me and my twin would have a chance of living a normal life. We all moved to Denmark.
When we started preschool, there was a lot of concern from my parents. They were afraid that other kids would not be cautious enough around us. I also found it hard to learn and understand Danish. The teachers later discovered that I was dyslexic.
Going through my school years
The 10 years in school were a nightmare. My twin and I were the only black girls in the whole school, actually the only black kids in our city. We got bullied a lot because of our handicap. People sometimes hid our wheelchairs. We didn’t get invited to any parties, nor to play with other kids. I remember a guy once in my class, he told me that he would never date a handicap girl because handicap was a burden and probably no guy would ever have a thing for a girl like me.
The teachers were awful. One of the teachers laughed at me when I had to read out loud. Another one of the teachers videotaped one of my presentation and then made me watch it again and again using it to point out everything I did wrong. This went on for years. Imagine what that does to a little girl in a wheelchair with no friends, a little girl, who was already getting bullied for her handicap, skin color, and hair! My confidence was completely shattered.
I remember asking what I could be or my options for the future and the teacher looked at me and said: “You won’t do anything, probably you won’t even finish this school with good grades, or get into high school.” He told me that “Handicapped people don’t get a good education”. He went on and on about how “people with dyslexia don’t really get good grades or in university”. I remember being so confused and frustrated.
After those 10 years, I went to a boarding school that changed my life. I learnt how to have friends. I remember someone hugging me for the first time. I was confused cause normally no one in my previous school would touch me, let alone hug me. Even black people from church felt uncomfortable around me. They wouldn’t look me in the eye or speak to me directly, they always spoke to my younger sister or mum about me. So you see why suddenly I felt seen.
As a kid I always noticed that I was treated differently. I realized that my handicap made even black people uncomfortable. They didn’t know how to act, so they ended up ignoring me. Things were different at the boarding school. I got treated like a person. I began to be invited to everything and talked to many friends. I felt included included. It was new and exciting. I stopped using my wheelchair that same year.
Post High School
I finished with fine grades, but the last six months were tiring. I got into a business economics university. Education and health care is free in Denmark so getting into school wasn’t a problem. I later dropped out after 2 months because I was diagnosed with stress and depression. I had been in school for 17 years, and I was 23. I was tired. I took some class on dyslexia, cause it wasn’t that “hard” or on a niveau* as university and I only had one class every week, so I could manage that.
It was the first time I was diagnosed with mental health. I was the first one among my friends and family to ever get diagnosed with it, so not only didn’t I understand it, I had no one to talk about it. My mom didn’t take it seriously. She said that sometimes white people make up things. She also said I should pray it all away. My doctor didn’t really give me anything nor recommend any therapy. She told me it was probably a phase. I didn’t do anything, I thought that it would just go away.
I have always been a resilient kid so keen on proving people wrong, because the idea of someone outside my body, my mind, dictating my limits in this life has never sat right with me.
The following year I went back to business economics university, this time I lasted two and half years before dropping out. A lot happened in those years. I was raped whilst waiting for the bus. This affected me so much I dropped out. I was still a virgin at that time. I got diagnosed again, this time with depression and PTSD.
I started getting therapy and group session for my PTSD, and after a year I went back to university, this time I took up computer science. It was hell 2.0. Despite having friends this time around, I got diagnosed with anxiety. I had anxiety, depression, and PTSD. At one time, I was in a group with a girl who was an exchange student and she told me that she had never really seen a black girl in Denmark before. She thought that all black people had AIDS, and lived in small tents. That was on my first day meeting her, it only got worse after that. I struggled with racism and slut shaming. I dropped out again after another 2,5 years. To say I was tired, is an understatement.
I thought I had going through enough at that point, with my handicap, bullying and dyslexia, and rape. My heart broke and I lost a bit of faith about life. I felt that I had not anything more to give. I just didn’t understand why I had to go through so much pain while none of my classmates experienced not even a single of my misfortunes. I felt the unfairness of life.
I started having suicidal thoughts. (I wrote a post about it here: https://nouw.com/niyonshima/om-at-blive-30-ar-35367354) I told my sisters and mom that I needed a break from anything with education in it. I needed to find out how to love life again, cause at that point I hated myself. I always woke up with anxiety. I couldn’t sleep because of PTSD. M y life was a nightmare. I wanted to give up on life the pain I carried every day was just too much. I was drowning.
When I thought about suicide it was never because I felt unloved, it was because the pain hurt too much. It was because I was too tired to keep carrying it while hiding it all behind a smile..
Loving life again
For two years, I stopped going out. I kind of dropped everything to focus and learn about my mental health. It helped! I no longer feel like I’m drowning anymore. I haven’t had nightmares nor a suicidal thoughts for over a year now. I found happiness in the small things.
This year, I was gonna be active/social again, but COVID ruining that for me, I am still working on my mental health. I am happy to say I will be embarking on new education studies next year. I realized last year that the thing I have always wanted to do was to help people, but my teacher always told me “I couldn’t and who would want help from a handicap, etc.” His words led me to study economics and computers which were never my passion
I am following my heart now. I am going to study to become a social worker, so I can help young people who are like me. I know I am not done with becoming Lumiere. This is all just a chapter in my book, I still got more to to give.