I am Trying

Tanatswa's Story

My name is Tanatswa. I am 22 years old, and I live in Chitungwiza. I am a full-time student at the University of Zimbabwe studying Risk Reduction and Disaster Management.

And I have Xeroderma pigmentosum (XP).

In simple terms, my skin is extremely sensitive to sunlight because my body cannot repair certain DNA damage properly. I was diagnosed when I was only three months old. The condition has affected my skin, caused repeated tumors and skin cancers, and eventually contributed to the loss of my sight.

But that is the condition. That is not my whole life.

When I was younger, I spent much of my time indoors because sunlight was dangerous for me. At home, that meant I did not really have friends outside my family. In my first years of school, I went to a local school. Later, I moved to St. Giles, a special school, where I learned alongside children who were blind or living with other disabilities.

There, the way I looked was not something everyone was staring at. I was simply a student.

Later, through secondary school, I continued learning with students who were blind and students with albinism. I did not experience the same level of segregation there either. Then I reached university. University was different.

Suddenly, I felt like there were two worlds: the disability world and the mainstream world. The university told students like me that we needed personal helpers to move around campus.

On my first day, I could not even find someone to take me to the lecture hall. I had to message the class representative and ask if someone could come and help me. Eventually I found a helper. At first, she was good. Then sometimes she would disappear without communicating.

And the funny thing is, I am independent.

I write my own assignments. I do most things for myself. Sometimes I only need another person to help me navigate somewhere or check an assignment for small mistakes.

But when you cannot see, one missing person can change your entire day.

There was a time I went almost two weeks without going properly to the dining hall because I did not have someone to accompany me. Friends wanted to help, but they had their own lectures. Sometimes someone would come back and ask, “How are you?” And I would say, “I’m fine, but I didn’t eat.” Then we would have to buy food somewhere else, even though buying food outside was never part of my budget. Going home becomes expensive too. I may have to pay someone to accompany me to the bus stop and then pay for that person to travel back.

During my usual commute, I was once almost robbed while I waited for someone who was supposed to help me get to work.

These are things people do not always see when they talk about independence. Sometimes independence does not mean that you never need help. It means you know exactly what you can do yourself, exactly where you need assistance, and you refuse to let needing that assistance determine what you are capable of becoming.

That is part of why I chose Risk Reduction and Disaster Management.

At first, I wanted to study social work. I was accepted elsewhere, but there was no suitable accommodation, so I came to the University of Zimbabwe and chose this degree because I saw similarities between the fields.

Then I started realizing something else.

People with disabilities are vulnerable in many environments, at universities, in public spaces, and during disasters. Yet when policies are made, when plans are written, when decisions are being taken, you often do not see someone with a disability sitting there saying: “No. This does not work for us.” I want to see people like me speaking up for our community saying in the middle of a disaster “Come this way instead!”.

That gap between what is happening now and what should be happening interests me. People sometimes look at a blind person and immediately ask whether we can really do certain work.

“Can you do this?”
“You are blind.”
But how will systems ever change if the people affected by them are never inside the room?

My medical journey has demanded its own kind of resilience.
With XP, tumors can develop quickly, especially on areas of my body exposed to sunlight. When my family notices a new growth, we know it needs medical attention. Sometimes the greatest delay has not been knowing what to do. It has been money.

There have been years when I have needed so many procedures that I cannot even count them properly.
In 2024, my nose began bleeding repeatedly. Sometimes I would bump it against something. Sometimes I would simply wake up and find blood on my pillow.
Eventually, I told my mother, “No. I need to get checked. This is getting out of hand.”

Doctors found skin cancer. Radiotherapy was not readily available to me where I was, so my family came together and arranged for me to travel to Namibia. I received many radiotherapy sessions there.

I came home and for a while, it looked like things were healing. Then the problem came back.

Eventually, I was referred for further treatment and surgery. Doctors removed the cancer, but it took several procedures before the results finally showed that the cancer was gone.

Then they had to reconstruct my nose.

Surgeons used skin from my forehead and cartilage from my ear to create the shape of the nose. Later they separated the tissue from my forehead once it had established itself. And somewhere in all of this, I was still a university student. That is the part that makes me laugh sometimes. I could leave university for surgery knowing that the following week I had an examination. Then I would come back and write it. Fortunately, I passed all my exams!

I am trying. That is what I always say.

I try to be strong because I know my parents are already carrying their own worries. I do not want everything to become another burden for them. So sometimes you just decide that you have to become strong for yourself.

I still have medical problems to deal with. There is another small tumor inside my right eye that my doctor says needs to be removed. I have had tumors there before. With XP, the battle does not simply finish. Every day may bring something different.

But I believe the things we have gone through should not be define our future.

We have scars. Yes.
We have challenges. Yes.
But what are you trying to achieve? Try it by all means.
That is how I think.

Sometimes I look at somebody who has hands, eyes, legs, opportunities, and they have already decided they cannot do anything.
And I think: why?!

People already look at someone with a disability and assume, “She needs money. She is looking for money.” No, begging is not my passion!

I want education. I want to work. I want to continue studying. When I finish my degree, I hope to come back for postgraduate study, while looking for a job with the qualifications I already have. I want to build something for myself.

I have also been fortunate with many of my doctors. I am grateful to them. During my recent cancer treatment, doctors understood that with XP, waiting can be dangerous because a tumor can continue growing. Sometimes they prioritized my treatment. Years ago, when I needed another tumor removed, one private doctor even told my family not to pay his professional fee and only to cover the hospital costs.

But outside those doctors, awareness is still a major problem.

Once I was in town with my mother and someone looked at me and asked why I was burned.
Why is she burned? They did not understand that sunlight itself damages my skin.
Even among people living with XP, there is not enough connection. We are few. We do not always know one another. We do not have enough opportunities to sit together and say, “This is what happened to me. What happened to you?”

And when people do not understand the condition, dangerous things can happen. Some families may refuse surgery because they do not want their child to be cut. Some doctors may have little experience with XP because it is so rare. Yet delaying the removal of a suspicious tumor can allow the problem to become much worse.

That is why awareness matters. One day, when I achieve what I am trying to achieve, I want to be part of changing that.

But there is something I want families to hear now. Please let your children go to school. There are special schools. There are places where children who are blind or living with disabilities can learn. It may be difficult. It may require help. But give us space to be educated. I know people with XP who are not in school.

That hurts me because education changes what becomes possible.
At the same time, education alone does not remove the cost of living with XP. The sun protection we need is expensive. A bottle of the lotion I use can cost around twenty dollars, and depending on the weather, I may need several bottles in one month.

If I cannot afford it, sometimes I use ordinary petroleum jelly instead. What choice do I have?

Once, I was given several bottles of lotion to help me. They were expired. All of them. Please understand what that means. My skin is already vulnerable. Giving me something expired is not helping me.

Yes, we need sunscreen.
Yes, we need hats and protective clothing.
Yes, we need medical treatment.
People with XP need help.
That is the truth. But we also need something beyond help.

We need opportunity.
We need education.
We need doctors who understand the condition.
We need families who do not hide their children.
We need to be included when decisions affecting people with disabilities are made.
And we need people to stop deciding what we cannot do before we have even tried.

I have lost my sight.
I have lived through skin cancers.
I have gone from surgeries back to examinations.
I have needed other people to guide me across a university campus while fighting to prove that I am capable of navigating my own future.
And I am still here.

Still studying.
Still planning.
Still asking what comes next.
I am trying.

And I intend to keep trying.


Poem associated with the narrative