When the vision subsided, friendship prevailed espresso

When our alarm goes off in the morning, many of us silently swear a little inside before opening our sleepy drunken eyes to locate the noise. But imagine waking up, opening your eyes and instead of a pillow, partner, or alarm clock, seeing absolutely nothing. Going blind is a nightmare for nearly 200 Swedes, and Andreas is one of them. But not everyone has a friend like Peter.

Many people associate physical disabilities with age and poor health, but this is far from the truth. When you meet Andreas Engberg and Peter Svensson, it’s easy to believe they’ve been together since birth, but appearances are deceiving, and they’re not even related. They are childhood best friends from the start at Furutorpskolan in Vinslöv – 97. The beautiful and special friendship that is brought to light is based on what would be a personal tragedy for many – Andreas going blind, it was only a matter of time.

The strong friendship has become even stronger

When asked, Andreas and Peter; As to why the friendship has become stronger, it is almost comical how similar their answers are. Both completely agree that he was holding on even before Andreas received the terrible news. It was just figuring out how friendship would help them deal with the incurable disease together.
– We have always had a sincere and strong friendship. No disease or anything else can get in the way, Andreas says, continuing:
Peter is my eyes, and I trust him with my life. When we are outside, he describes the surroundings so I can imagine. We had to learn about our way of socializing, how we act and how we mold ourselves. It is impossible for Peter to know what I understand and what I do not, so I must express myself as clearly as I can. It was a learning process, but today we have communication that works really well.

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Andrea’s voice fills with energy when we ask for an example.

– Peter always walks in front of me. When it’s time to stop, he pats me on the shoulder or stops. Sometimes I go to him, but he protects me. In new places we have a safety routine where he explains what he’s seeing so I know what to watch out for. It could be curbs, ladders, holes in the ground, tent stakes, or other things I could cut myself on.

“Behead then.”

We talk about the perils of the blind, when Andreas reveals a truth alien to us.
My legs are full of scars from accidents when I misjudged my surroundings. Once I fell through a pane of glass at the Galleria in Hässleholm. He cut my left knee and my right thigh. Andreas adds: I was almost decapitated because of a large piece of shrapnel hanging over my head.

“Are you sure you can see from before?”

Andreas scratched his cornea when he stabbed himself on a palm leaf in his apartment in Hässleholm. When his vision was still hazy after two weeks, he went to the doctor.

– They didn’t find anything wrong with my eyes. One doctor even asked, “Are you sure you could see before?”

Andreas was only 27 years old when his eyesight failed. As a sought-after watchmaker, he has worked for the most prestigious watch brands. He thinks of going back to another life before LHON, and you can sense the sadness in his voice.
– Career and future plans went to hell. I have worked for the most prestigious watch brands in the whole world, including the Bahamas. My last employer was Rolex in Copenhagen, where I only managed to stay for a year.

When nightmares come true

Most of us wouldn’t even want to imagine a situation like Andreas’. But how do the lines of thought run, and what happens when the nightmares become reality?
– When the news came to me, I had been ill for three months. My new doctor was more familiar with LHON, and I provided a DNA sample. When this was confirmed, life turned upside down. Despair was complete and dark thoughts filled my head.
Andreas tried talk therapy, but soon noticed that it didn’t work for him.
– I felt bad talking to the counselor, three times was enough. After that I decided to be as independent as I used to be, and with time I felt better.

We talk about society’s prejudices about the visually impaired, when Andreas shares harrowing memories.
– One of them threw my cane away and told me to bring it to prove that I was blind. Other times, people didn’t believe me, even though I presented my medical certificate. I have only one percent of my sight left, and it is awful to be a liar. It made me appreciate the friend I have in Peter more than ever.

Good thing about poor eyesight

Despite the tragedy and the darkness, Andreas still manages to find a glimmer of light.
The first impression is gone. Now I give people more time to get to know them, and I have more friends because of my poor eyesight, says Andreas, before happily adding:
Another advantage is that you don’t have to worry about stagnation. The electric bill would be really cheap because I don’t turn on the lights.

Friendship prevailed

Together, they have braved and overcome obstacles in life that might have been impossible for others. According to Peter, helping someone get out of a tragedy is difficult, but for Andreas, he would do anything.
– I was determined to support Andreas with all I could. My only focus was to make his new daily life easier, thanks to which he has so much confidence in me today.
Since the intense announcement in the fall of 2010, Andrea’s perception of life, himself, and others has changed.
You can do more than you think, even if it’s hard at first. It’s still a challenge, I’m fighting every single day. It’s okay to cry, but never give up – just like Peter never gives up.

Common prejudices and misunderstandings about the visually impaired

• Only the elderly and people with poor health had visual impairments.
• Blind people must see completely black to be legally blind.
• It is always visible in the eye if the person has a visual impairment.
• All blind people walk with a cane or guide dog.

Andrea’s tips for living life to the fullest

• Get a friend so you don’t dress too badly, it’s easy to mix colors and patterns that don’t match.

• It takes more energy to be sad and low than to be happy and high. Keep doing what makes you happy, don’t let illness stand in your way and get the most out of you.

• Let things take their time. Don’t stress yourself out and try not to get angry when things don’t go as planned. It takes a lot of practice, take it step by step.

• Have the courage to literally fall, the important thing is to get up again. Never give up, it’s not an option.

What is LHON?

Andreas is one of 200 people in Sweden who have suffered from Leber’s hereditary optic neuropathy. It is a mutation, genetic damage to the optic nerve that is only inherited from the mother’s side. those who develop LHON He loses sight within a few months and in the worst case scenario can go completely blind. The number of LHON carriers is unknown, as not everyone develops it. The majority of sufferers are men between the ages of 20 and 40, but the disease also affects women.

Find and support for those who suffer from LHON

Since 2018, there is a registry where people who have taken a DNA test and LHON holders can register. The goal is to help researchers map and study the disease in order to better understand it and find a cure in the future.

Eye Color Association

A non-profit organization made up of people affected or carriers of LHON. It is run in close cooperation with Karolinska Institutet, and is Sweden’s largest in spreading knowledge about the disease. Affected people can turn here for help and support. The LHON Eye Association organizes joint activities and has a psychotherapist on call who has the same LHON.

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What is Leber’s hereditary optic neuropathy?

• LHON is a genetic mutation that occurs in mitochondrial DNA (the mitochondria convert nutrition into energy in the cells of the body).
• The optic nerve in people with LHON does not receive enough energy and cannot interpret visual impressions to the brain.
• Hereditary nerve damage is on the maternal side only, and appears around the age of 20 to 40 years.
• Severe visual impairment occurs within 2 months and affects the central field of vision. Vision becomes blurred and can completely disappear in the center of the visual field, but the periphery is rarely affected.
• LHON can lead to total blindness.
• Anyone can be a carrier of LHON and both men and women are affected.
• In carriers, 50% of men develop the disease and 15% of women.
• Almost today. 200 Swedes have LHON.

This is Andreas

Name: Andreas Engberg
Age: 39 years old
Family: mother, father, three brothers and a two-year-old son.
Lives in: His own flat in Hässleholm, Skåne, with his younger brother who is also blind and affected by LHON in 2022.
Interests: various interior design projects at home, meeting friends and traveling to electronic music festivals in Europe, including Germany and Portugal.

Text and photo: Helen Katzman, freelance writer