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introduction

Borreliosis, or Lyme Disease, is a merciless disease. It targets those who are the most active, breaks them down, and drains them of all energy—and of life itself. No one has ever gotten borreliosis from sitting on the couch eating bonbons.

Everyone who has borreliosis has lived an active life. Being active isn’t just a part of life for us—it is our live, and it will always be the only life we know. It’s only our bodies that no longer can handle it.

We plan a day out on the bike, only to be too tired to leave the house. We buy every book on the Pulitzer shortlist, as we’ve done every year—but now we never read them. We miss our friends and think about how long it’s been since we last talked—only to be too exhausted to answer the phone when they call.

A few months after I first got borreliosis, I could still leave the house at dawn, take my camera, and cycle thirty kilometers into the countryside in the dark, just to photograph moose at sunrise.

Six months later, I stood at home cooking macaroni, which I ate with butter and ketchup—because the thought of showering and then walking across the street to the store was far too exhausting.

Progression

Day 0 • May

Out photographing at Lake Bornsjön, a few miles south of Stockholm, Sweden. That’s where it started—with a tick that latched onto my calf. I don’t know how long it had been there, but it couldn’t have been more than a couple of days. A little later, the area—about the size of my palm—turned red. It looked like eczema, but it didn’t itch or bother me. I applied some hydrocortisone and didn’t think much more of it.

1 month • June

Midsummer’s Eve. I don’t remember if I felt sick—maybe just a bit under the weather, but nothing I would have any reason to remember. I know the redness on my calf was still there—I remember someone asking about it. It was mentioned that I should get a TBE vaccine, but I figured that since more than a month had passed since the tick bite, the virus would have already made me sick if it was going to. Besides, it would be too late to take the vaccine anyway.
Lyme disease—I’d heard of it when I lived in the U.S., but I always thought it was something limited to Connecticut. I felt completely healthy and saw no reason to worry.

2–3 months • July – August

End of summer. I began to feel a slight pressure on my chest. Not enough to cause alarm, just a mild discomfort. I do remember thinking that I should always carry my phone when I went hiking in the woods, or on long walks—just in case. I was still out and about a lot, usually with my camera.

4 months • September

Early autumn. I started to feel pain—especially in my hands, and particularly where I had old injuries. It was as if every injury I’d ever had suddenly came back to life. I especially noticed how a fracture from over twenty years ago started hurting so much I had trouble using that hand.

A light sluggishness began to creep in—I remember thinking how it felt unusually difficult to get truly excited about anything. But I kept living life more or less as usual—just with a little less energy, a little more pain. I was still very active. Those early autumn nights were the very last when I still packed my camera and biked for miles through the night. That life was now coming to an end.

5–7 months • October – December

Fall and the end of the year. The acute pain in my hand subsided, and life returned to what I then considered normal. During that first winter, there wasn’t any sharp pain that left a lasting memory

But I kept replacing keyboards, because it felt uncomfortably painful to type, and eventually I ordered a mechanical keyboard from the U.S.; I also kept swapping out computer mice. But no matter what I bought, it didn’t feel right. It would take nearly a year for me to realize that there was nothing wrong with the mice and keyboards I kept replacing—it was my hands.

The permanent pain had entered my life—so slowly over that first half year that I hadn’t even realized it was there.

that did not go right!

When I started writing this, I was a bit puzzled by the timeline. I had always thought the disease progressed from an infection to total collapse in about a year.

But something didn’t add up, because I have a few scattered memories of going out with friends one weekend, or attending someone’s birthday party… And I definitely wouldn’t have been able to do those things after I became truly ill.

When I looked at the documents, it seemed like two years had passed instead of one. How could that be possible?

There’s a year after I was infected with Lyme disease that I can barely remember. I lived in a sort of gray zone, where the infection made me ill — but it wasn’t yet so agonizing that it left lasting memories. It was a lost year that I must have lived through in a haze.

When I was sitting alone at home during that year, I wrote some notes that I still have today. They’ve helped me piece together what actually happened during that time. Here’s part of one of those notes, written on New Year’s Eve, a year and a half after I was infected:

”for me, when I look back on the past year, I realize that this has been the year I was the living dead. Nothing progressed, nothing new happened, I didn’t take part in my own life. The year swept past me like a snowstorm I watched blowing outside the window — it was there, it passed, but I was lying on the couch and experienced none of it.”

I will now have to go back and try to remember that somewhere in there was a whole year I barely know of. But what I just happened to give you here is a perfect example of the confusion during those early years..