Colleen Lightbody: A Journey of a Worrier to a Warrior at TEDxHyderabad (Transcript)

We then went through some extensive surgery. Gabriel was put in a full body plaster cast from his shoulders to his feet. And again his little hips kept in place that he couldn’t move and one of my most enduring memories of this time was how Gabriel and I used to sleep. He used to sleep lying on top of my body in an effort for myself to give him some kind of comfort. He’s had a few other operations and possibly will still have many more.

But after a couple of years everything had settled down and once the plaster casts came off, Gabriel started talking and he has not stopped talking since. Firstly, he is incredibly social, he loves socializing and he loves people, terribly friendly. And secondly, he is incredibly articulate. Gabriel has a wonderful command of the English language and he speaks like a little genius. I kind of figured that he’d become a doctor.

Then came the courage part. 5 years later, Gabriel was about to enter formal schooling and his teacher said to me, ‘Colleen, I’m not sure why but I just think you should take him for some tests, just to check that he’s ready for school’. So I said 10 years ago, almost to this very day in front of a panel of professors at the Johannesburg Children’s Hospital where I was told that my son was permanently and irrevocably brain-damaged. Gabriel will maybe even reach the cognitive capacity of a ten-year-old. However he has this amazing talent which is the ability with language.

Gabriel suffers from something called fetal alcohol syndrome. His biological mother had been drinking in his pregnancy. Alcohol has an irrevocably damaging effect on the baby central nervous system and most tragically on the brain. Alcohol literally shrinks baby’s brains. In South Africa we have the highest incidence of fetal alcohol syndrome of anywhere in the world. Worldwide the statistics are: about 0.1% to 0.3% of babies are affected by alcohol which I find horrifying. In South Africa, it is closer to 14% and we have the fewest resources available to us.

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So I cried all the way home. One of the things I do in my work is I teach people that emotions are useful and wonderful things. Unfortunately we’ve created a society where we don’t allow people to express their emotions. In fact, from a neuroscience perspective, if you remove or damage the emotional part of your brain, a person is able to function completely normally. However they become pathologically indecisive, they become unable to decide whether they’re going to go to work in the morning or what breakfast cereal to eat. So emotions are useful. It’s what you do with your emotions that count.

One of the great warriors of the mind in my country is Nelson Mandela. And Nelson Mandela always says, ‘Do not judge me by my successes, judge me by my failures and how many times I have got up again’. When I give talks about fetal alcohol syndrome, one of the demonstrations that I do which is quite heartbreaking is I break an egg into a glass and I pour alcohol over the egg. And within seconds this egg actually begins to cook. Alcohol cooks babies’ brains. There was nothing I could do about our reality. I cried a lot and I still probably will cry.

So what we decided to do is we decided to create something which is called The Flutterby Foundation and we created this foundation to build awareness for drinking in pregnancy. And the tagline of the association is: if even one child is prevented from the scourge, then Gabriel’s life has purpose. Gabriel himself tells everybody that he has got fetal alcohol syndrome. He stands up with me and gives talks about it. If you had to meet Gabriel in a restaurant he would come up because it’s terribly friendly and he would say to you, ‘Hi, my name is Gabriel and I’ve got fetal alcohol syndrome because my mom drank in her pregnancy’. And I always go: ‘Gabriel, tell me it wasn’t me’. Although the truth is it could have been.

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So then came the control part. Discovering that my son had irrevocable brain damage made me realize that I had to take charge of my life, I had to care for this child forever. So I changed my life from a life of purposelessness and powerlessness, I started to do things differently. I bought some running shoes and I bought a bicycle and I started to climb mountains. And this is my daughter and myself at Base Camp Everest and the other one is Kilimanjaro. And I started to run, I started to run marathons and 90 kilometers ultra marathons. This is from somebody who had never done a stitch of exercise before.

And then I’ve got this crazy idea because I think once you start going like this, you can get out of control and I got this crazy idea to do an Ironman competition. So an Ironman competition is a 3.8 kilometers swim in the sea, followed by 180 kilometers bike ride, followed by a 42 kilometers run. So I remember standing there on an African beach while the Zulu dancers beat their drums and jangled their beads in celebration before entering the African waves. And I don’t know if any of you have ever seen an Ironman swim they call it the washing machine. It’s the craziest event, it’s for knitting, you’ve got goggles get knocked off your face, people kick you and I thought that, that was going to be the tough part.

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