Above: Crystal Harrypersad photographed at her Debe home. Makeup by Shenelle Escayg, photos by Mark Lyndersay.
My name is Crystal Harrypersad, I’m 25 years old and I’ve been living with Guillain–Barré Syndrome pronounced gee-YAH-buh-RAY (GBS) for the past 20 years and Scoliosis for the past 15 years. GBS is a rare autoimmune disorder in which your body’s immune system attacks your nerves. Weakness and tingling in your extremities are usually the first symptoms.
These sensations can quickly spread, eventually paralysing your whole body. Most people with the condition must be hospitalised to receive treatment. The exact cause of GBS is unknown. But it is often preceded by an infectious illness such as a respiratory infection or the stomach flu.
There’s no known cure for GBS, but several treatments can ease symptoms and reduce the duration of the illness. Most people recover from GBS, though some may experience lingering effects from it, such as weakness, numbness or fatigue.
As a child growing up, I remember running and playing outdoors with my sisters and friends from the village. We had the childhood people our age talk about when they were kids; we played in the rain, ran around bare feet and pitched marbles. I remember the feeling like it was yesterday, feeling the earth beneath my feet and pure joy without a care in the world – just being a child.
On November 21st 1998, at the age of four, only a month away from turning five, I felt dizzy and sick. It was a Saturday morning, my sisters, cousin and I were at my grandparents’ house, they were not at home at the time, and it was just us kids. I remember the entire place and everyone around me was spinning, I was vomiting non-stop. At this point, my body became weak and I couldn’t move. My sisters held me by my arms and legs and carried me home.
When I eventually got to the hospital, my older cousin held me in her arms in the emergency room, I was slipping in and out of consciousness and nobody seemed to know what was the cause. I can only imagine how helpless she felt at that moment.
All the doctors and nurses did everything in their power to help me, they did every test possible and after a week, they diagnosed me with GBS.
I was in the ICU for the next four months hooked up to life support along with a feeding tube. A lot of people came to visit me at the hospital and my wonderful mummy never missed a day, she always had faith that I would get better. After four months, I was moved to the children’s ward because I was finally able to breathe on my own, the doctors were ready to send me home, I left the hospital alive and well but I could no longer walk.
The doctors said I would be able to regain the ability to walk but after many therapy sessions, the only thing I was able to do was stand up. I had to relearn doing things for myself at the age of five. When I couldn’t do something I would get frustrated because I knew how to do specific tasks but my hands or legs wouldn’t cooperate.
Whenever I was impatient, my mother was my rock, she was calm and patient for the both of us. May God continue to bless her because she is a true ANGEL! Many people thought that because I couldn’t walk that I couldn’t go places, but she never listened to people, she carried me everywhere with her.
She ensured that my childhood was like any other child’s; happy, loved and full of unique experiences. I was loved by the people closest to me and that was all that mattered to me. I was still able to play games with my sisters and cousins – I particularly enjoyed playing power rangers.
Eventually over time, some things came back to me and I could do things but differently and in my own unique way. My mother ensured that I was able to go to Primary School, the school was at least 25 minutes-walk away from our house but she took me there every day on my wheelchair and never once complained.
Then I went to Secondary School, like most schools, it wasn’t very accessible for a wheelchair. Luckily, it was a newly built school and for the most part it was flat. However, for forms 4 and 5, the classroom was on the second floor and my mother had to carry me up and down those stairs every day.
Most days I understood how much of an inconvenience it was because I could see how difficult it was for her to carry me up and down the stairs, she would be breathless every time, even though we made many requests for the classroom to be on the ground floor, it never changed.
This really discouraged me and it became a place I didn’t want to go to anymore. After Form 4, I stopped going to school. Sometimes you know when things aren’t for you, and I felt like school wasn’t for me anymore and I am okay with that. However, I love reading articles and learning about things. In 2012, my sister Christine bought me a laptop, this was my first electronic device and I was obsessed with it. Learning never stops and the world is at your fingertips, the internet teaches you so much! It’s not just for Facebook and Instagram.
Even though I don’t have a certificate to show I graduated from a school, I love learning about the world and different cultures. Whenever I tell people I went to school, they seem amazed by the fact that I was able to go to school, far too often when Trinbagonians see someone in a wheelchair they automatically assume a lot and jump to conclusions.
Instead, take the time to ask a question or simply just listen without judging. A lot of people that I meet, often tell me they feel sorry for me, honestly, there is no need to feel sorry for me. I am a happy person, I am content with what I have and thankful for the people in my life. Feel sorry for the people who don’t know how to be content, happy or kind.
Adulthood taught me many lessons and one of them is doing what you love. I truly enjoy art. I have a passion for quilling; it’s one of my favourite things. Quilling is an art form that involves the use of strips of paper. The paper is rolled, looped, curled, twisted and otherwise manipulated to create shapes that make up designs to decorate. Doing it allows me to explore my creativity and create amazing pieces of work. In my free time, I do meditation, watch movies and spend time with some of the most amazing kids.
In the future, I hope schools and other places become more accessible for the disabled. I know first-hand how difficult it can be, I feel like we’re pushed aside as if we don’t have feelings and needs. So instead of pushing us aside and making us feel like we’re an inconvenience to others, try to understand how we feel and be kinder to us.
I still have hope that one day all buildings and other services will be more accessible to those of us with disabilities if the state and its agencies take the lead in working with disability organisations locally to make those needed changes a reality for everyone.
Commissioned artwork by Crystal Harripersad
Sponsors: Dale McLeod, Jacqueline Scott, Starlite Collection, Sacha Makeup, JB Fernandez Memorial Trust II.