Technologie macht frei

This text talks about my sister’s battle with melanoma and the role of technology in our civilization. She would probably hate me for writing this, but I don’t care. I’m not writing this for her, but for those who cared about her and for those who might find themselves in her situation in the future. My goals with this text are:

  • To tell her story. She was very private about her illness, not wanting to be treated differently. I believe she had that right, but I also think her story deserves to be told, and some people need an explanation.
  • To present my views on the role of technology and the importance of technological progress.

Puedes leer este texto en español aquí.

It’s 1 am on January 29, 2024. Exactly one week ago, my sister Carmen died of melanoma. She was 26 years old. She never surrender, she fought until there was no more calories left in her body for the cancer to consume. She wanted to live, but she couldn’t.

Freedom means different things to different people. For me, it has a very simple meaning: freedom is the capacity to execute your will. In other words, freedom is the ability to make the events you want to happen, happen.

Most humans share common desires: we want to live, be happy, not suffer. People also have more personal desires: some want to share their ideas with the world, others want to excel in something, some crave wealth, fame, love, or just to be left alone. Some even wish to die; this wasn’t the case for my sister. She wanted to live with all her might. She was full of vitality, seizing every moment of well-being to explore the world and enjoy life to the fullest. She wanted to be happy. She wanted not to suffer. She wanted to do so many things, but she couldn’t. She wasn’t free.

In September 2020, a terrible year, a lymph node was removed from her right groin. The biopsy revealed it was a metastasis of a melanoma with a BRAF mutation, and she was diagnosed with stage III melanoma. The primary melanoma was never found, though there was a suspicious mole on her lower back that disappeared inexplicably a few months before the biopsy. Perhaps her immune system had already begun fighting the cancer and destroyed the mole. In fact, before any treatment, she showed signs of vitiligo and some white hairs, indicators of an active immune response against melanocytes. In short, at 22, with no apparent reason, her life was shattered by a fucking mole.

A BRAF mutation occurs in the BRAF gene, part of our DNA that codes for the BRAF protein, which helps regulate cell growth. In normal cells, this protein controls growth and division orderly. However, when a mutation occurs - particularly the V600E mutation, common in melanoma - it results in an abnormally active BRAF protein, continuously signaling cells to grow and divide uncontrollably, leading to cancer.

My sister’s battle with melanoma, while tragic, was also a story of hope – a demonstration of how far we have come and how much further we need to go. If she had been diagnosed 15-20 years ago or in a less developed country, she likely would have died within months. Yet, she lived for three years, mostly leading a normal and healthy life. These three years weren’t due to a miracle, divine will, or even her will to live. She lived these last three years because of extremely sophisticated medications and life-saving surgeries. These three years, where she was free, were possible thanks to technology. Technology created by other humans. Technology that liberated her, albeit not as long as she would have wished.

During these three years I’ve been reading a lot about melanoma. I wanted to ensure that the right decisions were made regarding her treatment. Fortunately, she was in the hands of a very competent team and my help was never needed. Nontheless, I learned a lot about this terrible disease. For anyone facing melanoma, either personally or with a loved one, I’ve learned there’s hope. Advances in immunotherapies and targeted treatments offer long term response, though, sadly, they weren’t enough for my sister. Despite various treatments, the cancer was relentless. There were moments of hope and periods where she lived life to its fullest, like when she visited me in Switzerland and we climbed Klingenstock together. But ultimately, the disease was unstopabble. She fought bravely, wanting to live and experience freedom, yet cancer limited that freedom, a reminder of how much further we need to advance.

Carmen climbing Klingenstock

Two days ago, my father cried, saying, “I’ve failed her. She believed I would save her again, as we always have. But I couldn’t. I’ve failed her.” Of course, he hadn’t failed her. He did everything he could and I will always admire him as a father for how he cared for my sister. Despite his efforts, there was nothing he could do to save her. It wasn’t in his power to cure her. In this sense, he was not free. But there’s a truth in his words. Her death could have been prevented. Melanoma, after all, is treatable; it’s just skin cells growing uncontrollably. We just don’t know how yet. We haven’t developed the technology that could have cured her in time. Carmen studied Pharmaceutical Sciences, she had faith in medicine. She believed until the very end, taking her medications until her last day, hoping to be free again, partly because we made her believe it was possible. She made us promise to pick up the towel if she threw it in. And we did. But the technology didn’t cure her cancer. In a way, we failed her.

Technology is the cumulative and evolving result of applying knowledge to manipulate matter and energy. It encompasses a complex infrastructure of tools, systems, and methods that build upon each other over time. This concept represents the application of scientific knowledge to shape and interact with the physical world.

We live in an era of unprecedented technological progress. Diseases that were once incurable are now treatable, and new discoveries are made every day. However, these advancements should not be taken for granted. They are the result of the work of thousands of scientists, engineers, doctors, nurses, and many others. They are the fruits of our civilization’s labor, and to a large extent, of our economic and political systems.

I tend to think of technology as a force that sets us free. It gives tools and methods to execute our will. It gives us freedom. For instance, if I want to heat a cup of milk, I can use a microwave. If I want to travel quickly to another city, I can use a car. In general, technology expands our ability to execute our will by manipulating matter and energy in ingenious and complex ways. We must not forget that our bodies (and our minds) are, after all, the product of the interaction of matter. However, I am not naive. I recognize that technology can also paradoxically act as an agent of restriction. The devastating use of atomic bombs in Hiroshima and Nagasaki is an illustration of technology’s capacity to annihilate the very essence of freedom – life itself. It can also be used to suppress freedoms, as illustrated by Orwell in “1984”. It seems paradoxical that technology can be used to eliminate freedom, but it is not. Enabling someone’s will sometimes means eliminating the freedom of others.

I would like to say that the path we must follow is that of accelerated technological progress. That we must develop technology as quickly as possible, because it is the only way to cure diseases like melanoma and save people like my sister. That we must embrace the exponential. That we must develop it as fast as we can, and everything will be fine. But I can’t. I can’t say it because I don’t know if it’s true. I have seen how uncontrolled growth in a complex system can lead to its collapse. I have seen how cancer took my sister. And I see how this can happen to our civilization. Despite this, I am optimistic. I believe the trajectory of technological progress is not predetermined and that every decision we make in the development and application of technology reflects our collective will. I believe we can make the right choices. I think we can move fast, but we must be careful.

I want to live in a world where people that want to live, can live. A world where a fucking mole does not endanger your existence. And I know such a world is possible, but it is not guaranteed. We must work for it. Technology originates from people - from you, from me, from all of us. And it’s within our power to develop technology in a way that set us free.

This post is licensed under CC BY 4.0 by the author.