Black matter

I live in a body that is sick in several ways at the same time. Cancer is part of it, but it is not the whole story. There is also the exhaustion, the constant nervous system activation, the racing heart, the breathing that never quite feels effortless, and a body that constantly demands my attention.

The hardest part is not that I will die one day. I have, I think, in all ways possible for a loving human being, accepted that. The hardest part is living in this in-between place.

I am not well enough to live freely. I am not sick enough for everything to stop. I exist in a limbo that could last a very long time.

I know my cancer is slow-growing. I also know it is incurable. I will probably not die from it in a matter of months, but I will most likely die from it before I die of old age. That knowledge is always there, even when I am laughing, playing music, smelling the summer air, or enjoying something beautiful.

Many people assume that the hardest thing must be knowing that you are going to die. For me, that is not really where the pain lives. Every single living thing must die. It is inevitable, and in a way beautiful, although sad.

The pain lives in carrying that knowledge for years.

Living year after year with limitations, symptoms, treatments, medical appointments, and a future that has gradually become so much smaller.

I have not lost my ability to feel joy. Quite the opposite. I can still be genuinely happy because of my people, music, humor, dogs, food, creativity, and beauty. Those moments are real.

The problem is that they do not change the underlying reality.

That does not mean the joy is false. It does not mean I am depressed in the traditional sense. It simply means that joy and suffering do not cancel each other out.

I can feel both at the same time.

I can be happy in a moment and heartbroken about my life on the very same day.

I can feel gratitude and bliss, and heartbreaking grief at the same time.

I can love my life and be profoundly tired of living it.

These are not contradictions.

They are my reality.

I think people sometimes misunderstand this. They see me laughing, making plans, getting excited about something, or becoming deeply engaged in a project. It is easy to assume that means I am doing better than I am.

But my mood and my overall well-being are not the same thing.

I can have a good moment without having a good life.

I can get a dopamine boost without changing the underlying problem.

I can hyperfocus on something I enjoy and still be very sick.

One reality does not erase the other.

I live with a constant sense that something is wrong. It feels as though my body is always signaling danger. I long for rest but cannot find a place to rest. I want to escape, but there is nowhere to go because it is my own body I am trying to escape from.

There is a loneliness in that which is difficult to explain. Not because I lack people. I have an incredible support system. I am deeply loved. There are people who would come running if I needed them.

But some things cannot be carried by anyone else.

This is an existential process that, in the end, only I can go through.

I carry a grief that is not very visible from the outside. Most people still see the version of me who jokes, gets involved, cares deeply about others, and keeps making plans. That person exists. She is real.

But there is another truth as well.

I am very tired.

Not just physically.

I am tired of enduring.

And it is important to say that out loud, because people are quick to call it courage or strength.

The truth is that I do not walk around feeling strong.

Most of the time, I just feel tired.

The fact that I keep going does not mean it is easy.

It simply means that I keep going.

One thing that is important to understand about me is that I am not primarily afraid of death.

I am afraid of prolonged suffering.

I am afraid of living for a very long time in a state where the burden consistently outweighs what life gives back.

That is why my thoughts often return to the subject of time.

Not because I lack reasons to live.

I have many.

I love the people in my life. I want to protect them from grief. I want to stay for their sake.

But I also find myself wondering what time is really worth when the cost is so high.

That is not a forbidden question.

It is a human question.

And it does not come from a wish to die.

It comes from exhaustion.

There is a part of me that longs to put down the burden. Not life. The burden.

Those are not the same thing.

I do not think I lost hope because I gave up.

I think I lost hope because I have looked at a very difficult reality for a very long time without looking away.

There is a difference.

Many people protect their hope by looking away sometimes. By thinking less about the future, less about the consequences, less about what the disease actually means.

I do not seem to be built that way.

I look.

I keep looking.

And it comes at a cost.

I think I may have lost something even bigger than hope.

I have lost trust.

Trust that my body is going to give much back.

Trust that the next evaluation will fundamentally change the picture.

Trust that there is a solution waiting just around the corner.

I have lived with this long enough to see the patterns.

That does not mean I know the future.

It means I am tired of expecting rescues that never come.

I think that is why I sometimes feel alone with these thoughts. The people around me love me so much that they almost automatically take on the role of representing hope. They want me here. They want to believe in more years. More Christmases. More moments to cherish.

And that is beautiful.

But someone also has to represent the truth of how heavy it is to be the one carrying the body.

My grief is not a sign that I have stopped loving life.

My questions are not a sign that I want to die.

My exhaustion is not a sign that I have given up.

Quite the opposite.

I think these questions exist because I love so much.

Because if I did not love life, people, and beauty, it would not hurt this much to wonder what more time is really worth.

There is still love in my life.

There is still music.

There is still beauty.

There are still moments of joy that are completely real.

The problem is not that those things are missing.

The problem is that the burden has become so heavy.

My dark truth takes more than my bright truth gives back.

Not because the light is insignificant.

But because the cost of carrying the darkness has become so high.

That is the conflict I live with.

Not between life and death.

But between love and burden.