Between the Visible and the Invisible
An Interview with Mateja Pirman Majcen
“For many years, I was seen by those around me as a sighted person. Now, whenever I use a white cane, people see me as blind. But neither is really true. It isn’t simply a matter of whether you can see or you can’t. Sight exists on a spectrum. Most of us live somewhere between the visible and the invisible.”
Editor’s Introduction
Some limitations, such as using a wheelchair, are visible at first glance. Others, like Mateja’s, can remain hidden for a long time - not only from those around us, but also from the person themselves. Mateja lived with low vision for many years, and most people never noticed. For a long time, I too saw her as someone with perfectly normal sight who simply bumped into things now and then. Even though she had spoken about her low vision several times, I still could not truly imagine what it meant to move through life in her shoes.
In this interview, she speaks openly about living with retinitis pigmentosa, an inherited retinal disease in which the visual field gradually narrows. She describes the many ways she learned to hide her limitation and adapt to the world, and how much energy this cost her.
Today, she shares her story honestly, without embellishment. She speaks not only about losing her sight, but also about acceptance, grief, inner strength, and the courage it takes to gradually become visible and live in your own truth - even when that means revealing your vulnerability.
Mateja, when did you first sense that something was wrong with your vision, and how did you find out about your diagnosis? What was hardest for you to accept at the time, and how did the diagnosis affect you and your family?
Childhood—when no one knew it was my sight
Even as a child, I showed certain signs of low vision. They were most noticeable in unfamiliar surroundings, where I could not get from one point to another on my own without bumping into some kind of obstacle along the way. When the light was poor - for example, in the evening around a fire - the other children would play without a care, but I never joined them. People simply assumed I was quieter and preferred the company of adults.
The truth was that I never felt relaxed enough. That feeling stayed with me into adulthood.
I often wondered how other people could do things that I couldn’t. And yet it never crossed my mind that I might not see as well. It didn’t cross anyone else’s, either. I truly believed that everyone saw the world exactly as I did.
The first examinations and a life without an explanation
People around me interpreted my behaviour in their own way. I was given different labels - that I was quieter, that I liked listening to adults, that I was clumsy because I bumped into things, or that I was simply slower.
When I was six, my mother began to notice that something was not quite right with my vision. She took me to the hospital for an examination, where they found that I had night blindness. They did not make a more precise diagnosis at the time, so we simply accepted that I could not see as well at night.
But the difficulties were not only present at night. They were noticeable during the day, too. When I rode a bicycle, I often crashed into things. I also fell and injured myself. Cycling quickly became too fast for me, so I would often brake hard. I didn’t understand it then, but today I know that the world is simply too fast for someone who cannot see well, because it is harder to process everything happening around you in real time.
No one connected any of this with my sight. People thought I was afraid of speed, not that I simply could not see well enough.
Diagnosis at fourteen and the feeling of shame
I received the actual diagnosis when I was fourteen, when they tested my visual field. I remember that examination very clearly. They told me to press a button every time I saw a green light. I could see only a few, and I pressed the button each time. But I noticed the nurse’s confused looks. She repeated the test three times and kept asking me whether I understood the instructions.
After the examination, she asked which secondary school I was planning to attend. When I told her I was going to a grammar school, she implied I should choose something else because I clearly didn’tt understand basic instructions. That was the first time I felt deep shame. A feeling took root in me that I wasn’t capable enough, or even intelligent enough. It didn’t occur to me that I couldn’t see—it felt as though there was something wrong with me.
About two weeks later, I was diagnosed with retinitis pigmentosa. By then, I had less than twenty degrees of visual field remaining, which meant I was classified as a person with low vision. For comparison, a person with typical vision has a visual field of around 180 degrees. The doctors could not tell us whether my condition would get worse or how quickly.
At home, we did not understand what the diagnosis meant, nor did we receive any guidance or support, so we were left alone with the diagnosis and my condition. We simply lived from one examination to the next, hoping for the best.
What stayed with me most strongly was the feeling from that examination - that I was not capable enough, that I did not understand things.
When I speak today with people who have the same diagnosis, I often hear very similar experiences. The people around them often perceive them as less capable, slower, or as people who have more difficulty understanding instructions. That happened to me when I was fourteen, too. No one considered that the issue wasn’t my understanding, but my vision.
Many people didn’t even know that you had low vision. How did you manage over the years with an invisible limitation, and what was hardest about it?
The invisibility of the limitation
I like the term invisible limitation because it captures both how a person with low vision is perceived and how they function.
Precisely because the limitation is invisible, it remained invisible to me for a long time too. I did not know how to recognise it, much less explain it to others. When I was growing up, people didn’t talk about these things much, and no one asked me how I actually saw or experienced the world. That is one reason my difference remained invisible for so long—to me as well as to others.
How compensation developed
Alongside this, compensation naturally developed because of the brain’s ability and tendency to fill in missing visual information. I could see roughly twenty degrees of my visual field, so my field of vision was very narrow, while around it I could still perceive light and contrast. My brain automatically filled in the rest of the visual field, creating the impression of a complete picture. That is why I never felt that I could see so little, even though I could not rely on my sight.
I also began, quite spontaneously, to find ways to make up for the missing information. I turned my head more, observed my surroundings, and listened to gather the information I was missing. I increasingly relied on my other senses.
Memory and logic also became extremely important.
I use a great deal of energy and mental capacity to memorise a space. If nothing changes, I simply walk from memory. I know exactly where a bin, a flower planter, a table, and so on are.
I also rely heavily on the logic of a space. If I am crossing a road, I know that sooner or later there will be a kerb. If I am in a pedestrian zone, I expect bins. Before entering a shop, there will probably be steps or a slope. I am constantly thinking about what might appear in my path.
Another form of compensation is learned behaviour, especially in social situations. When I meet someone new, I quickly offer my hand because I often do not see when someone else is offering theirs. I learned to observe people’s facial expressions and quickly work out what is happening around me.
Over time, it became second nature. It meant that my limitations went unnoticed. But it took an enormous amount of energy, and I was often tired.
The cost of compensation
When more people are around, when you enter a new environment, or when you find yourself in unfamiliar situations, this way of functioning becomes increasingly difficult because those situations are harder to manage. If you do not explain your condition, everything becomes very stressful.
Starting in a new work environment, for example, is demanding. When I think about how much mental energy I already use for basic things—orienting myself, remembering the space, anticipating and navigating—it makes sense that I sometimes have less capacity for taking in new information. I am learning alongside sighted people, but because of my limited visual field, I simply do not notice many things.
If I don't explain this, people automatically assume I can see and may label me as less capable, less efficient, even confused, or as someone who needs more instructions and guidance than others. You notice it, and you feel it. Slowly, it gets under your skin and settles somewhere deep in your subconscious. That is why honesty on my part and a supportive work environment on the other are so important.
The gap between what you want and what you can do
The hardest part is when the gap between what you want and what you can actually do keeps growing. And if you hide the limitation, you keep it invisible: other people do not understand you, and they help you less. As a result, the gap becomes even wider. That is the hardest part, and it hurts.
I remember many unpleasant situations. I remember walking straight into a tree, tripping and flying across the room. I remember the looks of people who did not understand why I had tripped. They would simply comment that I had had too much to drink, that I was strange.
My way of compensating in situations like these was to become even friendlier, even more likeable, and I often made jokes at my own expense. That made it easier for me to get through those situations. In reality, all of it was slowly building up inside me.
What triggered the process of personal growth in your life, and how did it affect your relationship with your low vision?
The beginning of personal growth
Personal growth primarily helped me move from being invisible to becoming visible.
The first step was recognising how I was actually living - what constant compensation meant and how much energy I was spending on it every day.
When I began working on myself, I didn't intend to confront my low vision, because I wasn't yet aware of how deeply this limitation affected my life. I began because the constant state of inner alertness and stress had started to manifest in other ways, such as thyroid problems and fatigue.
Searching for a cure
At the time, I was still largely hiding my condition. Above all, I was looking for a cure.
Because conventional medicine has no effective treatment for retinitis pigmentosa, I turned to established alternative approaches, specifically acupuncture. I travelled to Canada, Denmark and Austria for treatments.
After the treatments in Canada, my vision improved for a while, in small spots across my visual field. It was then, when the sun was shining, that I saw my own shadow on the pavement for the first time. It actually frightened me.
Unfortunately, the effect did not last, and the financial cost was very high.
But the experience gave me something invaluable. For the first time, I experienced what it was like to live with better vision. There is less tension in your body. You can walk down the street relaxed and have a conversation at the same time. You have so much more energy left.
The Camino as a turning point
The next important milestone was the Camino de Santiago. I walked with a hiking pole the entire time. Every day I was out in nature, physically active, free from everyday obligations and very relaxed. For me, it was a kind of rebirth.
When I returned home, I got into my car - I was still driving - and drove off. Then I got out of the car without my pole. Suddenly, I realised how uncomfortable I felt. Walking became difficult and unpleasant, and I began to experience stress again. I became aware of the contradiction in my situation – I was still driving a car, yet as a pedestrian without a pole I felt completely insecure.
Those were the moments when I began to really see how I was actually living as a person with low vision and how I was making my way through life.
Giving up driving and grieving
As my vision gradually deteriorated, I went from being a confident driver to an increasingly frightened, anxious one. I became more and more afraid that I would miss something on the road or hurt someone. So I decided to stop driving.
This was my first major loss because of my sight. A car was not simply a means of transport to me. It represented freedom. I felt a profound sense of loss and entered a grieving process. I read a great deal about loss and gradually came to accept that there are some things we cannot hold on to. At that point, it was no longer about confronting my condition, but about letting go of the life I had known. I wanted to hold onto it, but I knew I couldn’t. I had to let it go. I also had to let go of one of my roles. For many years, I had been the one who drove other people around. When I could no longer do that, I began to ask myself what I could still give to others.
At the same time, I felt deeply grateful that nothing bad had happened.
The white cane as the next step towards acceptance
I became aware that something had been protecting both the people around me and me, preventing me from doing something reckless. I realised we have guardians who watch over us, and that mine, at the right moment, awakened in me the knowing that I had to stop driving. It was an extremely difficult decision, but I listened because I knew it was the right one.
The next major milestone was my desire to become a mother.
Motherhood prompted me to learn how to use a white cane. I realised that when I became pregnant, and later a mother, I would have to take care of both my own safety and my child’s. Because of my low vision, I had often been injured, and my abdomen had frequently been exposed to potential injury as well.
As I learned to use the white cane, the memory of the Camino came back to me. I felt that same sense of freedom again. I walked more upright, more confidently. When you have low vision, your body unconsciously begins to contract - your shoulders close in, your head lowers, as though you were constantly trying to protect yourself in case you bumped into something. The white cane also supported my independence, making it easier for me to go out and do different things on my own.
Even so, this is still an ongoing process for me. I still do not always use the cane when I need it. But more and more, I feel the same inner call I felt before I stopped driving - that it is time.
I want to use the white cane whenever I need it and to be completely at peace with that. An outside observer might say, “But it’s only a cane.” In a way, it really is only a cane, and at the same time it isn’t. For me, it represents accepting myself as I truly am and accepting the reality of my low vision. At the same time, I feel immense gratitude for the support of the people close to me, who have made this path easier.
Today
Today, working on myself is mainly about facing the losses that come with my low vision, accepting my limitations, and communicating openly with others about my sight. By doing this, I help people understand what they actually see when they meet someone with a white cane.
My greatest wish today is to live with more ease, more honesty, and a greater sense of inner peace.
Is there anything you would like to say to people who are currently facing a limitation, illness, or a difficult period in their lives?
Accept your own pace
One of the most important things is to feel and accept your own inner pace when facing an illness, a limitation, or a difficult life experience.
Each of us needs our own time. Some things shift quickly within us; others take months or years. What matters is that we don't compare ourselves with others, but accept where we are and what we are capable of in a given moment.
Inner guidance and nature
It is incredibly valuable to listen to our inner guidance. When we're in the midst of illness or a major life challenge, it can be hard to hear it. But we all have that guidance, and deep down we know what is right for us—when making decisions about treatment, relationships, where to devote our time and energy, what to limit, and what to give ourselves to more fully.
It takes great courage to hear that guidance, and even greater courage to follow it.
If we cannot yet hear our inner voice, we can observe nature. We often find answers for ourselves there as well. By understanding the nature of things - how nature works, how everything around us works - we begin to understand illness better too. Nature can be unforgiving, yet deeply benevolent, because it clears away what needs to be cleared away. In nature, something rages and cuts down everything in its path, and then peace returns. From that place of stillness, something can begin to grow and emerge again.
Accepting reality
Perhaps the most important thing is the courage to face reality as it is. It is often through accepting reality that the greatest freedom emerges. Only then can we begin to make different, more honest choices - choices that bring us closer to ourselves.
