Do We Really Have a Problem? - Lito Sousa's Illness

Some photographs demand time. More often than not, they are the ones I like most. Sometimes I pour myself a glass of wine and settle into a book by a photographer whose work I admire. Between one page and the next, I come across a photograph that I can lose myself in for eight, ten minutes. Time slips by unnoticed as I study a light, a shadow, a small relationship between things that I may not even be able to put into words. It is a quiet, intimate experience that comforts me. And perhaps it is precisely in that state, when the eye stops looking for immediate answers, that certain photographs begin to touch something far beyond themselves.

Maybe it is in those moments that I start thinking about the weight we give to the problems we carry. Some are real, painful, unavoidable. Others grow out of circumstances that affect us and stay with us for a long time. And then there are the ones that become larger because of the way we interpret what happens to us.

I know this from experience, too. I have struggled with depression. I know there are kinds of pain that can be overwhelming, and that getting through them often takes strength, determination, and an enormous willingness to keep going. What does not help is when someone dismisses that suffering as nothing, tells you to just snap out of it, or compares one person’s pain to another’s. Dismissing someone’s suffering does not make it disappear.

Maybe that is why I have learned to pay closer attention. To myself, but also to other people.

Other people’s pain affects me. It interests me because it reveals something that goes beyond any one person’s experience. Every person carries stories we know nothing about, wounds we cannot see, and problems that may look small from the outside but can take up an enormous amount of space within.

I have also learned that not every kind of pain comes from some extraordinary event. Some comes from concrete circumstances. Other kinds are built slowly through the way we interpret the world, the expectations we create, fear, guilt, loneliness, or our inability to find another way of looking at what happens to us.

Life has a strange way of changing scale. What seemed impossible yesterday may, with time, come to occupy a very different place. And something we once thought was small can reveal an importance we had never recognized.

But do we really have a problem? I do not want to speak for anyone else’s pain here, or magnify it or diminish it.

It is impossible to ask that question without thinking of Lito Sousa.

Lito was diagnosed with Creutzfeldt-Jakob disease, a rare, degenerative neurological illness for which there is currently no cure. The diagnosis came to someone who still had plans, a wife by his side, and a son growing up before his eyes. Suddenly, the future was no longer some distant idea. Time took on a different weight.

There is a particular cruelty in knowing that the body can impose an ending while the mind is still fully capable of understanding everything that is happening. Lito knows he may not live to see his son grow up. He knows he will have to face goodbyes that no one should ever have to anticipate. There are tears, fear, sadness. There is the suffering of someone who simply wants to keep living.

And yet, he has not turned his story into a complaint against life.

Lito talks about his son, his wife, and his desire to stay here. He cries when the emotion becomes too much, but he also makes room for humor and for a hope that seems almost impossible. He says he is a rare person and that, somehow, even a rare disease would have to find him. And he goes further: he believes he could be the first person to overcome it.

Maybe he will. Maybe he won’t.

The future is not in his hands, any more than it is in ours.

But there is something in that attitude that strikes me as greater than any prognosis. The outcome may be uncertain; how we choose to move through the road ahead is not. Lito could have chosen anger. He could have turned every day into an accusation against life. Instead, he keeps talking about possibilities, about love, about his son, about the time he wishes he could have.

And that is precisely where his story reaches me.

Because when I think about all of this, I find myself uncomfortable with some of the things we complain about. Not because our difficulties are unimportant or imagined, but because we often complain about things that can still be changed, while Lito is facing a reality for which there may be no way out.

He has a rare disease. We have a life that, so often, we treat as though it were guaranteed.

Maybe that is the difference that matters most.

Photography has saved me from many of my own pains. I have no doubt about the power it can have over a life. I have found silence in it when I needed silence, beauty when I could barely see it, and a place to breathe when everything felt too heavy.

But even photography has its limits.

In the face of an illness like Lito’s, it cannot restore movement, give him more time, or prevent a goodbye. It can make us look, think, feel. It cannot change everything.

And perhaps that is exactly why I keep returning to photography: because it taught me to look at life more closely, knowing that some things can still be changed, others have to be faced, and some, no matter how badly we want otherwise, are simply beyond our control.

When I think of Lito, I do not think only about what may happen to him.

I think about what we do with the time we still have.

Because perhaps the biggest problem is not having problems.

Perhaps it is going through life complaining about what we lack without realizing that, for someone, right now, what we call life would already be everything.