“Tracking myself free” by Perki, Pryv co-founder

On the day of the diagnosis, I was in bed in an “isolation room” in the urgent care department at Cantonal Hospital of Lausanne. I was transferred there from Morges the day before because my immunity was so low that I needed a sterile environment. My small room was no larger than a cubicle, and my wife, Amandine, sat by my side. Only one person was allowed to visit me at a time. When my mother arrived, my wife had to leave.

A group of doctors entered the room. I was alone with them, crowded in the cubicle. They had performed a biopsy on my hip. The results were clear, they told me. My bone marrow is overloaded with tumor cells. There was no longer any doubt. I had leukemia. The doctors asked me if I understood what they were saying. I told them I did, and asked some necessary questions. They told me that I would undergo chemotherapy as soon as possible.

I called my wife back inside when the doctors left. I said nothing but the word, “leukemia.” Amandine is a nurse, so she needed no explanation. She took me in her arms, crying silently. We didn’t speak much. I told her what the doctors said. And we sat in silence.

Soon, the weight of my illness fell heavy on my mind. Amandine and I were just five months married. She was pregnant. Now I had brought this upon her, and upon our child. All of our dreams and hopes were now caught in a storm. Facing down leukemia became my focus. We would do this together. There was no other option.

A few weeks before my diagnosis, I was working like a dog. I led a small start-up team building software to compare banking fees. I was a fresh graduate with a computer science degree. I was passionate about starting and building projects. I went to the doctor at the urging of my osteopath. I had complained of back pain so intense that I spent some work days lying on the floor. In the next few days I saw the doctor every day. He conducted a battery of tests, and the ordeal left me more and more tired. My skin and eyes became yellow, and we suspected it was a strange case of jaundice. Amandine and I made fun of it and took pictures. We never imagined that it would be leukemia. The thought was crazy.

But that’s what it was. And there was no turning back. The cancer forced me to realize my mortality. I was fragile. I was weak. And now I had to summon the strength not to die.

Over the next 6 years, I received a bone marrow graft, and focused on fighting toward recovery. I wanted so badly to keep control over myself and my body. I remember waking up in the middle of the night with a strange awareness of my body. I started speaking to it, to my blood, to my muscles, to all my cells, addressing them as troops, readying them for battle. It was a surreal experience. I felt such clarity that I truly expected something to happen, expected that I could control my body with my mind.

Another morning, I lost my mind. I woke up early, unplugged the needle from my chest, took my clothes and tried to leave the hospital. In my mind I was over everything, convinced that everything that happened to me had been the fruit of my will. I ended up in a straitjacket.

Cancer is a war. Living through it included moments of sheer horror, of immense ugliness, but this war was also my life, and life went on, with its joys and happiness too. Every horror is dimmed, thankfully, by moments of kindness, of humanity, of boredom. I took pictures of those hard times.. the radiotherapy devices, the rooms I lived in. Pictures of my face with a feeding tube in my nose. I have pictures of me naked when I weighed 56kg, bones inside pale skin. Even then I already knew that I was going to forget.

Living at the hospital, undergoing chemotherapy, I began tracking my life on the doctors’ requests. They asked me to take my temperature regularly, and to note how I was feeling. Over time, by tracking and noting everything, the doctors started trusting me to live outside the hospital. Instead of them collecting the data while I stayed in isolation, I would collect the data myself. Data meant freedom, it meant I could stay home with my family. At one point or another, I’ve tracked: my temperature, my blood pressure, my glucose concentration, my emotions, my vision, my physical condition, my work time, my activities, my excretory function, and my blood analysis. I was thorough. Leukemia and its treatment were a problem for specialists to solve, but I was going to give them every bit of data I could muster.

The tracking helped my doctors immensely. They were able to use the up-to-date information I provided to help me make wise decisions that have increased my quality of life and altered the path of my illness. Today, I count myself as a survivor, and I’m not done surviving. I still have to take twelve pills a day, and sometimes more in case of crisis. I still track my health and keep notes for doctor consultations. I never go far from home without my medical records. I even look at my records just to remind myself how lucky I am.

Today I also track the things I like. I keep photos of my kids, the great things they do, the places I go, and I use Pryv to keep most of it. I also use Pryv to communicate with my doctors, but it’s mostly about gaining and maintaining perspective over my life. I can look back at what I’ve done, at what I’ve achieved, and it gives me strength… and dissipates my doubts. On Pryv, I track the good things and the bad, but always the things I want to remember.

Since my diagnosis, I’ve gained an exaggerated empathy for people with illness, pain and disability. Cancer didn’t teach me much. It mostly stole some of my care-free attitude, but I’m lucky that I had a lot to spare. It mostly taught me to keep asking for help. Asking for help is giving others a chance to improve themselves. I asked for love, for hope, for kindness, and my family, my friends, my doctors delivered, and together we are overcoming this disease. I look back regularly on the notepads I’ve filled with data, and they remind me that I was weak yet strong, that I am sick, yet alive. They remind me to find the wonder and joy in every morning, in every breath, in every step.

In 2008, doctors believed that I would never father another child, but today, Amandine and I are the proud parents of four boys. And I’m tracking each one of them, from their first words to their health to their prolific artwork, and beyond. Life-logging is no longer just freedom for me, it’s also gratitude. And if you want to be happy, then gratitude, just like freedom, is essential.

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