Book of Steven

Book

of

Steven

Steven Petersen

Table of Contents

Introduction

Chapter 1 — Roots

Chapter 2 — Independence

Chapter 3 — Vision

Chapter 4 — Like Something out of a Science Fiction Movie

Chapter 5 — So You’ve Got Morgellons

Chapter 6 — The Whole World is Infected

Chapter 7 — No One Listens

Chapter 8 — Harald

Chapter 9 — Technology is Not Progress

Chapter 10 — I Live in Hell

Chapter 11 — I Will Not Kill Myself

Chapter 12 — So Many Tears

Epilogue

Resources

Introduction

My face is disintegrating.

Every time I look in my mirror I see living proof of infection. I am falling apart at the seams.

I’ve had lesions covering my forehead for over a year now. They creep down my chest and my arms. Imagine the worst acne you’ve ever had, then multiply it. Multiply the size of the zits by ten. Multiply the pain of them by one hundred. Multiply the rate of their rise and fall. Then imagine living with that face every day. It is as excruciating as it is humiliating. I wouldn’t wish this on anyone.

Sometimes the pain lessens and I think, It’s not so bad. But then I look, and I see. My face is a mess. A complete wreck of a human face. It’s bad. It’s serious. Far beneath the skin, little shards work toward the surface until my body expels them, spewing them out in painful eruptions.

Disgusting.

Trust me. I know.

Every day, I come face to face with this. With myself. Every single time I look in the mirror and see what I’m dealing with, I get that sinking feeling in my gut again. Desperation. Despair.

The worst of it isn’t even the pain. Or the mess. Or the humiliation. It’s how this thing’s shaken my confidence. I feel like I can’t look at anyone in the face anymore. I can’t face the world. Do you know how depressing it is, to see people flinch when they look at you? To know what they’re thinking? Junkie. Drug addict. I see them look back at me sideways, furtively, trying not to stare. I see the thoughts start to play in their heads. Loser. Get away from me. You should get that looked at. You should get help.

Trust me, I’d love to get help. I really would. But that’s the problem. No one can help me. Anyone who’s in a position to try will just jump to conclusions. They won’t hear a word of what I have to say, they’ll disregard my lived experience, and they’ll just decide that I’m crazy. Like, actually, certifiably nuts. I’ll be locked away in an insane asylum before I can blink. As if that will do me any good. Treating the symptoms won’t get me anywhere. It’s the core of this disease I have to get at.

I’ve been lucky. At least I have some friends who believe me. And some family, too. People who have listened. People who have been beside me one hundred per cent through all of this. Who are still beside me. Their love and support is incredible. Their willingness to listen, to connect, to reach out—that is the greatest gift in the world. I am so, so thankful for them.

I’ve been lucky in another way, too—I have a business I can step away from. I don’t have to show up for a day job, try to push through the pain and the emotional rollercoaster, nine to five, day in, day out. I don’t have to fight for long-term disability that no one will even consider granting. Instead I’ve got an established store with an incredible staff who keep my business running. I am so indescribably grateful for all my employees. They have kept my store running through all of this. They have kept me afloat while I’ve been so down and out. I would never have had the chance to heal if it wasn’t for them.

Each and every one of the people who have supported me has been a godsend. Even when I’ve let them down, even when I’ve been unavailable and struggling so much with my own pain and suffering, they have lent a helping hand or a listening ear. They have said, Come on, Steve, you can do it. And you know what? I can. Because of them, I can.

Because of them, I am able to undertake the most important work of my life and share my story with you. Because of the support offered to me by a very few people, I can fulfil this mission: to tell you the truth of what has happened to me, to us, to all the life on this planet.

In these pages, I will tell you about this infestation that my body tries so painfully to reject. I will tell you the truth of it, the whole messy truth of it.

But in order for you to understand me, in order to grasp what this experience of living in my skin is like, I need to tell you about my life. About how I, too, was a young boy once, growing up with hopes and dreams, struggling to make the most of this sacred opportunity to live. I need to tell you about this because it’s only when you see the whole picture of my life that you’ll understand. It’s the only way you can really know what I know. And once you know what I know, you’ll be able to see how I figured out what was happening to me. How I have been able to grasp the truth, all the horrible ugly mess of it.

Here’s my promise to you: Everything you read in these pages is my true lived experience. I’m sharing my life with you so you will be able to see what I see, know what I know, and understand what I believe.

I guarantee you that, at some points along the way, you will reject my words. You’ll reject what I say out of hand. I know you will. I know that my story seems crazy. I won’t blame you if you don’t want to listen, or if, even when you listen, you don’t believe me. My words are tough words. My story is really strange. My life is like something out of a science fiction movie, only stranger even than that. There will be places where you will not believe me. I know that.

What I’m asking is for you to remember that whatever you think you know—your values and assumptions about how the world is—these ideas are getting in your way. Your beliefs about what you think is true are interfering with your ability to hear me.

So stop. Leave that at the door. Whatever you think you know, set it aside. Listen to my story. Take it as a whole, on its own merits, as a full-meal deal. Allow yourself to ask, What if? Because hearing what I’ve been through might save you. Probably not. But it might. And even if it doesn’t, I promise that if you hear me out, you will look at your life at least a little bit differently—with more love, with more empathy, with more willingness to live your life as if it matters. Because it does. Your life matters.

Mine does, too. Here’s my story.

Chapter 1

Roots

In some respects, I was a saviour from the day I was born.

My coming into this world changed so much for my family. You see, I was the first one of us to be born on this continent. My parents were immigrants, and all my siblings were born in their home country of Denmark. I am the only one of us who was born Canadian.

Being the child of an immigrant leaves its mark. Things for immigrants are hard. Things that you and I take for granted were huge hurdles for them. Simple things become triumphs. That was especially true for my mom, Kirsten.

Because Kirsten was at home caring for four children, she didn’t work out of the house, didn’t get immersed in the community. She didn’t have the same opportunities as my dad did to learn English. So even something as small as answering the door was a challenge. It might seem like no big deal to you, but my mother struggled to communicate the simplest things.

She told me once about this guy coming to the door early on, and because Mom didn’t understand him he asked to speak with my dad. He kept saying, Otto, and mimed talking with his hands. So Mom understood what he wanted. She said something like, Otto, no home. Somehow the man managed to communicate that he could come back later, and he wanted to know when Dad would be there. But Mom didn’t know the words for the time. So here’s what she did—she went into the bedroom and came back with this little wind-up clock she had. She turned the dials until the hands showed eight o’clock. Otto, she said, tapping the clock face, meaning, Otto will be home at eight o’ clock. It worked. But imagine having to communicate like that all the time. You really learn the power of words.

But I’m getting ahead of myself. Let me back up.

My story really starts with their story, with their decision to move to Canada. Without that choice, I’d be a very different person, assuming I’d even be here at all.

Kirsten Sorensen and Thorvald Otto Pedersen both grew up in Denmark, on the isle of Fyn. Both of them came from farm families with traditional backgrounds.

In Denmark, my dad was called by his given name of Thorvald, or by his nickname Tay-Ho (that’s how you pronounce the letters TH in Danish). He was the youngest of eight children. When he was born, his father was fifty years old. If he were alive today, my grandfather would be 145!

Dad was an adventurer. I don’t know if that’s because he was the youngest—an anachronism in his family, almost—or if it’s because Denmark got occupied by the Nazis when he was seventeen years old, or what. But he always loved to explore the world, to try things his way, find a way to figure things out, even if it was a bit unorthodox.

His boldness was practiced early. During the war, he was part of the resistance in Denmark for years; the Allies would drop parachutes with food and weapons and stuff into the coal pit where he worked, and he’d smuggle the arms out to other people on the island. He didn’t get caught until April 28, 1945, a week before Denmark was liberated. He always said that the only reason he wasn’t shot was that the Nazis knew the war was over, anyway. So they let him live. But that gave him a taste for life, I guess. He quit the coal pit, and went to Norway to apprentice as a machinist.

After that, he travelled in Europe—Switzerland and France mostly—and even went to Africa, getting out of Algeria when their civil war broke out. Only, he spent the last of this money on his ticket across the Mediterranean to France, so getting back to Copenhagen (where he was living at the time) was an adventure in resourcefulness and relying on the kindness of strangers. He made it, though. He stayed in Sweden for a few years, working as a machinist. Then, in 1952, he went back home to Denmark, where he started his own trucking company, TH Trucking.

The trucking firm was pretty successful. He had a couple of trucks and a couple of busses, and he shipped farm commodities and people all over the island. During that time he met Kirsten Sorensen. After they’d known each other about a year, she moved into his house with her two children to work as his housekeeper. But turns out they were more than just employer/employee—they fell in love. On January 23, 1961, they got married.

Things turned sour for Dad in Denmark in 1960/1961. He lost his business. It’s kind of a strange story. See, he didn’t have enough money to buy a house, so he built his own instead. And he did a great job on it—it was big, beautiful and well made. That’s the one he moved Kirsten into—he was very proud of that house and he loved that he had a family to fill it up with. Then he got his house assessed. It was worth so much money, he couldn’t afford to pay the taxes on it! Eventually the government took his house and his business; his trucks were sold at auction.

That’s when he knew he’d had enough of Denmark. If he wanted to get ahead, if he wanted to build a better future for his wife and kids, then he had to do something different. He decided to move to Canada. He had a brother there, Pete, who worked as a machinist in Calgary, Alberta. So a few months into his marriage, Otto headed to Canada to see what opportunities were available.

He made a good start in Canada. He got hired on at the machine shop where Pete worked right away. It was walking distance from Pete and Gerda’s place—a good thing, as he didn’t have a car—and he built a small circle for himself there.

Near the end of the year he went back home to Denmark to get the family. He was supposed to arrive in mid-December, but his ship was late, so he ended up arriving just in time to sit down to Christmas Eve dinner with his in-laws. That was a pretty magical day, not least because it was Christmas; it was the first time he got to meet his daughter, Helle. My sister Helle had been born in October, while he was away, so he got to hold his first child for the first time on Christmas Eve.

My dad got to work sorting out the paperwork for the whole family to emigrate to Canada, and early in 1962 they left. In February, they boarded the Stavengerfjord, a passenger liner that ran from Oslo to New York City with a stop in the Danish capital of Copenhagen. Otto was thirty-eight years old; Kirsten was twenty-five. They had three small daughters in tow. My sister Helle was just four months old.

Kirsten was especially apprehensive about leaving the homeland. She’d spent her whole life on Fyn. Now she was sailing away from everything she knew, relying completely on her husband, with three daughters who were totally dependent on her. Canada held promise, true, but the challenges ahead would be extreme. She knew that. But she tackled it anyway. Because she wanted to give her children a better life. That’s the kind of courage she had.

The voyage was terrible. It lasted ten days, and Kirsten was seasick the whole time. She literally spent the entire trip throwing up. When they arrived in New York, she weighed all of 110 pounds. Without my dad, my sisters would have had a really bad time of it. But he looked out for them all, sense of humour intact, maintaining morale, keeping them all looking forward to the adventure of their new lives ahead.

They landed in New York at the tail end of February. After passing through customs, they transferred to a train, and on March 1, 1962, the Pedersen family arrived at Fort Erie in Ontario. They became landed immigrants that day. The Canadian chapter of their lives had begun.

At that time, in the 1960s, car companies would pay folks to drive a car from Ontario out west in order to keep up with demand in the markets across the Prairies. So Otto was able to get the family across the country relatively cheaply. He managed to get a station wagon, and he folded down the seats in the back so the girls could sleep. They drove all day long, day after day, and they made the trek to his brother’s place in just three days. Barely two weeks after leaving Denmark, the Pedersen family arrived in Calgary, Alberta.

For the first three weeks, the whole family lived with my uncle Pete and his