She May Have Spina Bifida But This Malaysian Is Already A Chef, Author, And Artist At 23
"Giving up is not an option."
23-year-old Aveena Devi Krishna Kumar's life began with surgeries. She went through five major operations in the first seven years of her life.
Diagnosed with spina bifida right after she was born, Aveena's childhood was spent mostly going in and out of hospitals.
"Just hours after I was born, I had to go through a surgery - spina bifida correction, which is basically putting the spine back together using skin graft."
"The spinal condition also led to fluid build up in my head and I developed a condition called Hydrocephalus. It is a condition where there's an abnormal accumulation of cerebrospinal fluid (CSF) within the brain. My brain was basically floating in water, to put it simply," explained Aveena when speaking to SAYS.
She had her second surgery when she was only six months old to remove the liquid and fix a tube to drain it out.
Spina bifida means split spine. According to the Spina Bifida Association, the condition occurs when a baby is in the womb and the spinal column does not close all the way.
The factors that cause spina bifida remains a mystery for scientists. They believe that it can be a combination of both genetic and environmental factors with many pinning it down to insufficient intake of folic acid in the mother's diet.
"I had my eighth surgery when I was 17 years old. It felt like the worst nightmare - I was fully aware of everything that was happening around me and I knew they were going to cut open into my head."
When she was 17, the doctors detected a brain condition - Aveena had a growth between her brain and vertebrae.
As a result, Aveena lost her hand functions and she couldn't sleep properly for three months. The growth was eventually the size of a little ball by the time the neurosurgeons operated on it.
It served as a wake-up call to the teenager - she promised herself that she would make the best out of the life she has been given.
"That's when I realised I shouldn't take life for granted. I went through the surgery, woke up and told myself that I'll do something with my life," said Aveena.
Not too long after that, the Spina Bifida Association Malaysia (SIBIAM) got in touch with Aveena, asking her to advocate for positive living and educate other children who are going through a tough time with other medical problems. Aveena took it a step further and started speaking to kids that are battling societal pressures on a daily basis too.
"I wanted to tell kids that there's more to life than just how we look like. I know some people who are wheelchair bound and hate their wheelchairs."
"When I look at myself in the mirror, I see my wheelchair as part of my support system, it is not my enemy. It is the reason why I can see and do all the things I do. My wheelchair is my best friend," said Aveena.
Aveena's condition left her wheelchair bound and government schools refused to take her in due to her condition.
After a letter to the education ministry, her parents finally managed to enroll her in a public school but it lasted only three months.
Why? Her teachers left her all alone during a fire drill. She was only seven years old.
"My mother would usually be with me at school, just to make sure that I'm okay but on that fateful day, she had some errands to attend to. So, she had asked my teacher to keep an eye out for me and left for a few hours.
"A little while after she left, there was a fire alarm and teachers immediately asked us to evacuate the class. In just a few minutes, the class was empty and the students and teachers had left me behind. I sat there - confused, wondering what was going on," explained Aveena.
Right as everyone was running out, Aveena's mother saw the commotion and managed to spot her teacher who quickly told her mother to go get Aveena because the building was on fire. Thankfully, it was only a fire drill.
From the sheer shock of how the teachers handled the situation, Aveena's parents were worried for their child's safety and decided to take her out of the school.
That didn't stop Aveena from wanting to pursue her education. Through recommendations, Aveena got into the Chempaka Assembly of God school and graduated at the age of 21.
It wasn't just school that Aveena was interested in. At the age of 10, she picked up painting.
"We had an Indonesian maid and she was so artistic and talented. She used to stitch bags from old clothes and that inspired me. She taught me to stitch bags and then I started making birthday cards, tried finger painting, and all sorts of other DIY things."
Her mother encouraged her passion by sending her to folk art classes, and she was there for five years. It opened up a whole new world of possibilities and through it, Aveena found her true passion for mixed media painting.
She recently sold some of her work at an art bazaar in Publika. Check out more of Aveena's beautiful paintings here.
By the time she was 17, Aveena had already published a book on her life experiences titled, "What's your problem?"
The title may seem peculiar to many, but Aveena explained that it was her response to the constant questions thrown at her about her condition.
"Can you walk?", "You can talk?", "Can you use your hands?", and "You read?", are just some of the questions that Aveena has to answer on a daily basis.
Instead of getting angry when thrust into situations like these, Aveena instead takes the opportunity to enlighten people on her medical condition.
The book is basically about Aveena's life as a spina bifida patient. It is lighthearted, funny and beautifully depicts the experiences the young girl has been through.
"It starts off with me talking about how I learnt to accept myself for who I am, because unfortunately, we live in a world where most people look at me like I'm an alien."
"Growing up, I realised that I either have to step away from those perceptions or continue letting it get to me. I chose to do the first. I also wrote about the most complicated phase of my life - my teenage years." added Aveena.
What's amazing about the book is that it has additional chapters that contain her family's take on how the experience has been for them.
The book has her parents, siblings and uncle's story on how it feels like to have a loved one that has spina bifida.
Her mother's chapter was the most emotional account of the experience. "It was both heartbreaking and shocking to read and understand how my family must have felt about me and my health condition," said Aveena.
Aveena also completed her diploma in culinary arts recently, and is now a chef!
Armed with an amazing, strong support system, Aveena is the picture of happiness at 23. She is talented, passionate, courageous, and vows to continue battling the insecurities to best live her life.
"The way people judged me used to confuse and hurt me but I understand now that those people are just shallow. Today, I have learned to love myself, see in beauty in things, and appreciate everything I've been blessed with."
"Giving up is not an option. I can confidently say this because I went through many nights crying myself to sleep, constantly telling myself it's all going to be fine. Remember, it's just a switch, the moment you give up, that's the day everything falls apart," said Aveena.