Beating disability with courage

Pretoria - Lourens Pretorius’s dream of becoming a pilot was  shattered when he lost his vision due to a condition known as Stargardt macular degeneration, a genetic eye disorder that causes progressive vision loss.

Pretorius was born with the disorder but lived the life of a normal sighted person, playing sports such as tennis and rugby, until the symptoms of the disorder started appearing when he was in Grade 3.

As Government marks  Disability Month in November, SA News Reporter Nosihle Shelembe finds out how this 35-year-old from Pretoria has managed to beat his disability.  

Pretorius’s struggle with his sight started when he gradually battled to see the scoreboard clearly and he couldn’t follow the ball when he played sports.

Initially, his teacher thought that he had a learning problem.  But it was his principal at Wonderboom-South Primary School who noticed that the problem was his vision. This is because when Pretorius read a book, he would hold it close to his face.

The exact cause of his eye sight problem was confirmed when an eye specialist diagnosed him with Stargardt macular degeneration.

This was a difficult time for him, he says, but he never felt sorry for himself. The only painful moment was when he had to change schools and leave his friends behind to start a new life at the Prinshoff School for the Partially Sighted in Pretoria.

“I was angry and frustrated. I could no longer do the things I love, like sports and the plans I had just disappeared. I was fully intent on becoming a pilot. I had to readjust my goals to fit my reality. That  was a bit of a tough time for me,” he says.

Life changing moments

When Pretorius joined the new school in Grade 7, he had to make some adjustments such as carrying large textbooks which were written in large letters.

The classes at Prinshoff School were smaller which allowed for individual attention for learners. The school did not use boards but projected the lesson on a TV which the learners could access from their desks.

Pretorius admits though that to go from an uncomfortable environment in a normal school to a special needs school where they do cater for your needs “without wrapping you in cotton”, was a bit of a relief.

As time went on, he accepted his disability. The feelings of frustration as well as anger disappeared.

He did not have to learn braille as his prognosis was  that he would not go completely blind but his eyesight would slowly deteriorate.

So as a teenager, life was pretty normal for him.  He even went through the dating phase and had his first girlfriend at the age of 16.

“It was both petrifying and exciting. She was a girl in my class. We  were actually very good friends before we started dating, so we had a good relationship. It lasted for about four years,” says Pretorius.

These days Pretorius has a mixture of friends  -some disabled, while others are not.

“There’s obviously acceptance amongst people who are partially blind. You can immediately realise what the other person is going through. Whereas with normal sighted people, there is an adjustment process because I can’t look people in the eye and people immediately think that I am dodgy, so there’s a feeling of distrust with some people.”

Support from family

Pretorius counts on his family and says everyone has been supportive of him since he was diagnosed with Stargardt macular degeneration. They help him with transportation and shopping.

“Something that I do regret to some extent is that maybe because of my condition and the amount of effort my parents put in with me that my brother sometimes fell in the shadows.

“Not that he ever gave any indication but when mom helps me, I wonder what my brother would be doing,” he says.

Pretorius currently holds the position of a Deputy Director for the Information Management Systems unit at the Government Communication and Information System (GCIS).

He has a National Diploma in Data Informatics from Unisa and has done a short course in programming.

In his first job, he worked as a receptionist for a psychiatrist for a period of about two years on a part-time basis.

In 2004, he got an internship with the South African State Information Technology Agency (SITA) and was appointed to a permanent position after two years with the organisation.

During his time at SITA he held the positions of an operational programmer and a system analyst programmer.

Living a normal life

In his spare time, Pretorius does gardening, plays computer games, listens to audio books and also spends time with his friends.

“I love fantasy and science fiction books. One of my favourite series would be Dresden Files by Jim Butcher because the series mixes the magical with the mundane in such a way that you could swear you have seen something like that before. 

“The main character also prevails against impossible odds through sheer grit and determination while still trying to do the right thing.”

Citing initiatives such as the National Disability Awareness Month, Pretorius feels that people have become more enlightened about people with disabilities.  

“”The complete ignorance that previous generations dealt with, is not there anymore.”

His disability has taught him that there are certain things in life that happen which one has to accept as they cannot be changed.

“You also need to realise that there are obstacles that seem insurmountable – you may not be able to get over the obstacles but you can find ways around them.”

Although he does not have any children at the moment, Pretorius says he does ponder on the idea of having his own family one day.

“I grew up in a close family. I would also like to have a wife and kids. However I have to keep in mind that because I have a genetic disorder and if I marry someone who does not have the gene at all, it’s a 50/50 chance that my child may have the same condition.

“If they do have the gene, then it becomes a 75% chance that my child would have that same condition. So it’s a bit of a moral tussle, one that I have not got the answers for.” – SAnews.gov.za