‘Without seeing and hearing, I can always smell and feel’

“The bad news came six days before I was to embark on a big trip. I was nineteen, had just completed my VWO diploma and was about to start a gap year.

“I’ve always been hearing impaired. When I was eight months old, I got my first hearing aids. My eyes deteriorated in my adolescence. I became night blind. When I was diagnosed, the ground dropped beneath my feet. Usher syndrome. This means: seeing worse and worse and hearing worse. And this cannot be stopped.

“What then? Not traveling? I just decided to go. Now I could still travel independently. My future was suddenly full of uncertainty.

“In retrospect, I can say that I made the right decision. I ended up having two gaps. It’s been a fantastic time. First I spent a year in Australia, New Zealand and South East Asia. Then I made a trip through South America.

“Travel has been therapeutic. I have learned that I can manage my future in two ways. On the one hand, I have had time to mourn, to let it sink in to what awaits me. Suddenly I was living with many questions and few answers. On the other hand, I think I enjoyed my travels even more intensely than I would have otherwise.

“I realized: I can take lots of pictures, but what good will I do with that? I have looked around very consciously, to store my impressions in my head.

“I remember a moment on the south coast of Australia. All my senses were wide open. The smells there, the wind through my hair, the sun on my skin. I felt: if I can no longer see and hear, I can always smell and feel. Life can enter in more ways than just my eyes and ears.

“A year later, in a hostel in Bolivia, I also had such an unforgettable moment. I traveled in a group, I didn’t know my travel companions very well yet. They had noticed that I often reached for my flashlight at night.

“It was with trepidation that I told about my situation one evening. The responses were so incredibly loving. I learned that I don’t have to bear my fate alone. Others can understand my pain. I’m not alone.

“I still feel raw sadness from time to time, especially when I’m alone. It won’t take longer than an hour.

“My parents are my rock. They have helped me find words for everything that happens and awaits me. I also have a close group of friends. They take me into account, but they don’t spare me. A good joke is never far away. They help me in the dark, at Lowlands, on vacation. We learn that a lot is possible if you are honest with each other and agree on what you would and would not like.

“I have a girlfriend for a few months. I am super in love with her. She knows how to make problems negotiable before they become a problem. I sometimes find it difficult to admit to her my sadness and my uncertainty about our future. I sometimes have a hard time accepting her help. Then I feel shame.

“She never gives me the idea that I am putting a brake on her life. She knows how to get me to a party, even if I say: go alone, it’s too dark outside and I can’t hear anything there. Then she makes sure that I sit or stand somewhere comfortable. I feel safe with her.

“The most difficult thing for me is to envision my future: for myself, as a couple. That feels especially difficult when I hear friends talking about work, home and family later.

“And yet, really, I’ve been fine for years. It would be a shame if I let worry about the future rule my life. I try to keep my focus on the here and now. That helps me. That’s how I enjoy life.”

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