At 5:30 a.m., Hanna boarded a van with a few other backpackers. She scuba-dived and snorkeled among the corals and tropical fish of the Great Barrier Reef. She was quite nervous, she admits. Underwater, she sees even less, and if she swam in the wrong direction, she wouldn’t be able to find the boat on her own.
Still, she slung the compressed air cylinders on her back, put on her goggles, and dived off the boat. She took the guiding hand of her dive instructor and enjoyed the twist of the corals. She didn’t see the fish, they were too small and were hidden. After swimming for a while, she let go of his hand. “Three minutes I was terrified, then I enjoyed it. It worked and I was still alive! My fear faded, it was really cool to be underwater.”
No more driving or cycling
It had always been his plan to take a trip between his bachelor’s degree and his master’s degree. But life turned out a little differently than expected. At the age of 20, Hanna developed Leber’s disease, a genetic eye disease. Within three months, she suddenly had a blind spot in the center of her field of vision. Compare it to someone standing a meter in front of you. The spot, a greyish area with twinkling lights, is then the size of a head, she explains.
This allows him to walk well without a cane or guide dog, but the spot is exactly in the area where you can see clearly. The view around this place is therefore blurred. She can no longer read, can no longer see details and therefore cannot drive or ride a bicycle. “I can see across the street, but I can’t see if that pole is a bus shelter or just a pole with a colorful house next to it.”
“As if my life had been taken from me”
In three months, Hanna went from a carefree student to a suddenly visually impaired woman. It took him a while to accept that. “I think it’s one of the hardest things I’ve done in my life. It sucked for a long time,” she admits. Because reading was suddenly no longer possible, she had to stop studying. She lived in rooms for two years, but returned to live with her parents. “My friends’ lives went on, mine didn’t. It was like a normal life had been taken away from me.”
She was offered help, she was able to learn braille and tricks like voice software on her phone. But for a year, she wouldn’t admit that she was visually impaired and therefore disabled. For a long time, she hoped the spot would diminish. “My uncle also has the condition and his sight has improved a lot after a year.”
What is Leber’s disease?
Leber’s disease is a rare genetic disease that affects the optic nerve. Two eye disorders fall under the collective name Leber: Leber optic atrophy (LOA) and Leber congenital amaurosis. Hanna has LOA; due to an error in the DNA, the fibers of the optic nerve die, so the vision is not transmitted correctly to the brain.
In people with this condition, their vision in the center of the eye gets worse over a few weeks or months. This spot can get bigger, but also smaller in a year, although the latter does not happen in most people. The condition usually occurs in men, but can also occur in women. There is no remedy.
In Leber’s congenital amaurosis, the retina does not function properly, this is usually noticed in childhood.
Source: eye fund
A dark year
Hanna has met with bad luck. His vision did not improve. She had to learn to accept it. A black year in her life, that’s how she describes the first year after the diagnosis. “It just didn’t sit well with me, I thought. Blind and partially sighted people couldn’t live the life I wanted to lead. Huge prejudice, I know, but suddenly I was one of them and I did not want. “
Hanna is a free-spirited and independent woman and decided to live on her own again six months after the diagnosis. She found her own studio in The Hague, the city in which she grew up. After a year, she resumed her studies. “But after two weeks I called my mum crying. Zooming in on the computer and trying to read it didn’t work. ‘That’s not possible, mum,’ I said. ‘I have to go to this rehab.'”
Rehabilitate between the sixties
Three days a week, she went internally to a rehabilitation center in Apeldoorn and received intensive computer training. She learned braille and useful functions on her mobile. It took some getting used to, the cheerful student who loved to party suddenly found herself among the over-60s learning how to cut an onion safely. “I learned some important things there, but it just wasn’t my favorite place.”
At the rehabilitation center, she was guided to learn to accept her disability. She met peers who were in the same boat. “One of them also studied. We had the same problems. With her, I could let off steam once in a while.”
Take a break
After this year, Hanna resumed her studies, now for the fourth time. Now with tools. It went much better, but there were still challenges. “Studying is a lot of fun, but this bureaucratic arrangement costs me a lot of time and energy. If formulas or tables in the statistics course are presented as pictures during an exam, for example, they are not accessible to my voice software. I can read them digitally in Word or as a PDF. I was told by email that the board would print the tables for me during the exam. Very good, but that does not bother me. is of no use.”
Now that she was going back to school and she knew how to cope with her disability, she decided to fulfill her dream of a long trip. “I googled ‘blind people traveling alone’ and saw a video of a blind, hard of hearing person who traveled halfway around the world. It gave me enough confidence. I didn’t want to wait any longer.”
She arranged a ticket to Australia and left. “I prepared for myself that it would be difficult to make friends. If someone waves at me or smiles at me, I don’t see it. I don’t recognize new people, so I can’t tell , ‘Hey, didn’t we see each other on the internet yesterday? beach?’ If it really sucks, I thought, I’ll just lay on the beach for two months and listen to audiobooks.”
But it wasn’t bad, it’s fantastic. “It’s partly because Aussies are the most relaxed and helpful people I’ve ever met. Every time I was playing around with Google Maps in a mall looking for a supermarket, someone always came to show me the way. A bus driver even walked to the door of the supermarket.”
Hanna is currently in New Zealand with her boyfriend Maarten. After two months of traveling alone through Australia, he joined. They have just returned from three days of hiking in a national park. “Good thing my friend is here,” she laughs. “It’s easy to forget a sign with the route and it’s hard to estimate the depth.”
“We did a hike where we had to climb seven hundred meters. There were these wooden steps in the way, which are very difficult for me to see. My friend kept saying ‘stairs!’ and then I knew I had to come up and pay attention.”
“Everything is still open”
After the diagnosis, she didn’t expect to travel the world with her visual impairment, but now she has plenty of plans. The next destination will be India. There she meets her parents and her sister for two weeks. And after that? “Everything is still open. I would like to go to Nepal, Japan, Vietnam or Cambodia.”
She doesn’t know yet when she will be home. “I love to travel,” she says. “Not just for me, but also to show the rest of the world that people with disabilities do some really cool things too.”
Every Sunday we publish a text and photo interview with someone who is doing or has experienced something special. It can be a major event that he handles admirably. Sunday interviews have in common that the story has a major influence on the life of the interviewee.
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