All parts of my body were fighting each other. It was a battle with multiple enemies and no allies. My entire being had turned into one big myoglobin storage unit with more than four hundred times the level of the maximum normal range. If none of the other things that were happening were going to kill me, this certainly would.
The main focus was on saving my life, and every hour, every day during the first week was touch-and-go. But now knowing what it was, the doctors started to turn their attention to why this could have happened. During the many scans of my body, they discovered tiny calcified remains where my spleen should have been. Somehow, I had lived—undetected—without a spleen, my fortress against this particular bacterial infection, and this may well have been the key to why everything had gone so wrong.
Peter was by my side the entire time, keeping track of my treatment and any iota of change in my condition. He was also there to explain complicated medical terms, the technical details and multiple test results, and convey the doctors’ messages to my parents and my sister, to my in-laws and his own sisters and, in a completely different and private way, to our children.
A week into my coma, Peter emailed our friends and colleagues, which resulted in an avalanche of love and support in every conceivable form: flowers, messages, poems, and letters. Even though I was unable to respond or understand, Peter and the children would read every single word to me, standing or sitting at my side. With so many people wanting to know what was going on and how I was doing, a spontaneous communication network was established. My family and closest friends and colleagues served as an important hub delivering Peter’s messages. With little to do and only allowed brief visits to see me, they talked to each other, they called other family members and friends, and they let their worries and worst fears run free.
Privacy was not something of which I had the privilege. I was exposed and needed help in every possible way. Caring for me was about making my unconscious body as peaceful as possible and trying to prevent it from developing bedsores. It was also about showing consideration for my family and respect for me as a person. I was barely alive, but I wasn’t dead yet. The nurses were gently covering up a horrible reality and trying to make me look presentable. Every day nurses washed me and made sure I was lying with my arms and legs at rest, though they couldn’t do much else for my comfort, of course.
One nurse in particular liked to wash and comb my rapidly thinning hair. She even braided it. Others had different ways of making me look pretty, neat, and as close to normal as you can get when you are bloated, discolored and comatose. They took special care when the children came and made sure to cover my damaged body, especially my hands. My blackened fingers had started to dry up and wither.
About a week had passed when Victoria brought in a photo of me and put it next to my bed. Standing outside in the sun at a Cambridge college, huge purple and white flowers behind me, I had a big smile on my face. It was summer, and I radiated the happiness I was feeling at the time. And somehow this photograph, this one passing moment of my life that captured me then at my very essence, made a difference. Doctors and nurses started looking at it before they looked at me in bed. They talked about it, asked questions about it with whoever was with me, questions about where it was taken, what I was doing there, my work then, my work now.
From listening to the answers, they started to see a person, the woman whose life they were trying to save. The picture of me as a healthy, happy woman helped them to focus on me as a human being in the bloated, battered body in front of them. It was exactly what the nurse who braided my hair was doing, holding on to that person—even if that person, me, was nothing but a lump of flesh, fat, bones, and water.
In that picture I was Rikke.
three
Being
Ihave always been a fighter.
I am a mother, a wife, and a scientist. As a teenager I thought I would become a professional football player. I dreamed of becoming an artist. I have published scientific articles and books. I’ve curated exhibitions on science and art. I’m a cosmopolitan. I love traveling and have lived and worked in three different countries. I moved with my family from Cambridge, UK, to Cambridge, MA. I fell in love with California when living in Los Angeles. I cherish my Scandinavian heritage. I’m an Anglophile and yet feel comfortably American. It’s weird, but it all makes sense, at least to me. I guess this is part of what makes us human: We are complex creatures, the composite result of our personal stories. In that way, I am no different from anybody else.
I was born on an island, in the same town as Hans Christian Andersen. Growing up on Funen gave you a sense of belonging and an identity. And if it didn’t, people around you would soon remind you that it did. There was an almost tribal family system at work, making it difficult for outsiders to penetrate close-knit circles. There was a special island code you had to live by, part of which being that anything unfamiliar or foreign was subject to suspicion and scorn. Outsiders were scoffed at for talking or looking different, and for not enjoying traditional dishes, such as the smoked cheese or particular sugary brown cake. My family trusted the illiterate charlatan from the neighboring village, who would sell anything for a beer and a favor, more than they trusted an upright stranger.
My mother was a teenager when I was born and my father just twenty-one. With little education and a child to feed, they each had to work several jobs, and I was looked after by my aunt and my grandparents. As I grew older and started school, I loved going to the bakery where my aunt worked or playing with the children in my grandmother’s street. It was safe and confined.
This was my world. Growing up in this community provided comfort and security. There was always someone to look after me. There was no need to go anywhere.
Many years before, my maternal grandmother had travelled far away, and as I played with the buttons in her “treasure” box she told me stories about the outside world. After the hardship of World War II, like many Scandinavians who had a hazy vision of America as a land of plenty and longed for something different, she had left Funen at twenty-two years old, ending up in the midwest on the plains of Nebraska, in a small town named Bassett.
My grandmother, the daughter of a nurse and a warden, was a practical young woman, used to working hard. She secured a job as a maid, her poor command of English of little consequence as she was a quick learner, happy, and determined to make it.
She liked her new country. In fact, she liked it so much, she overlooked the fact that legally, it was not her country. Technically, she was a Danish citizen living on a temporary immigrant visa. She didn’t notice that her visa had expired and carried on working for many months, living her American life. Growing up in a Scandinavian country, with little knowledge of visas and immigration rules, she didn’t even realize she was committing an offence by ignoring her expiry date. Eventually the local authorities got wind of her living in the town without authorization, and as she was unable to produce a valid visa, and her expired one had not even allowed her to work, she was sent back to Denmark, her American dream shattered. Permanently. By violating immigration laws, my grandmother was now a trespasser, an illegal alien, and the law came down hard on her. She would never be able to return.
The entire course of her life changed. She moved back to the town in which she was born, to become the lover of a married man.
That was my luck.
When I was three, my sister was born and shortly afterward my mother became very ill. We had to live with our grandparents for a while. My sister went to stay with my maternal grandparents, and I went to my father’s parents. This was a decisive moment in my young life.
My father’s mother worked at the local pharmacy selling over-the-counter pills. My grandfather was a hardworking, small-scale businessman. He owned a truck and drove around Denmark and northern Germany to pick up apples or sugar beets, or collect lumber, gathering odds and ends at farms, selling everything to the highest bidder, driving whatever anyone wanted anywhere. O
ne of my earliest memories is going with him, being on the road before dawn, and singing our hearts out, enjoying the ride. I was five years old. My grandfather had been working pretty much since he was five himself, when he was sent out to work in the fields.
By the time he had children, he earned enough to send his sons to private school. To him, education was an investment in his children’s future, but most of all it was an expression of love from a humble truck driver, who found it difficult to express his feelings verbally, to the people who mattered most in his life. I learned early on that education was important. My paternal grandparents were not exactly citizens of the world, but they taught me the value of diversity, the importance of tolerance and the benefits of knowledge and education.
My mother recovered and life went back to normal. But I continued to see my grandparents as much as possible. They had another, adventurous side to their lives. For a few months a year, my grandparents stepped out of their routine and managed a tiny shooting gallery at a local funfair. For me it was magical: the dance temple, the Miss Tanned Legs pageant, fairground stalls, large teddy bears, and all the ice cream and candy in the world. It was my favorite place.
Mostly I stayed around my grandparents at their stall or with my parents as they helped out, but one day I decided to explore. No one had seen me leave the stall, and when I didn’t respond to my parents or grandparents calling me, panic set in. The atmosphere of the fair was mostly good-natured, but sometimes there was trouble with people who had drunk too much, and it was not a place for a little girl to be alone.
Other stall holders joined in the search, of which I knew nothing. I was with Svend, the biggest and friendliest man among all the tumblers and acrobats. He and I had developed a special bond, and as an undiscriminating child, I never saw how fierce and frightening he was to look at. While he drank beer, I drank the milk he had for me. Best of all was the strongly flavored, matured local cheese that I loved. We were sharing thick slices of it on dark rye bread when my parents found me. Oblivious to the commotion, my big buddy and I were happily eating away in our own little world.
My parents and grandparents were relieved to find me, of course. It turned out not to be a big deal after all. Everybody knew Svend. He was perfectly harmless, but my mother was left with a lingering worry about my free spirit that never really went away.
When I was eleven, my parents were able to buy a house and we moved from the city to a small village. As the new girl, my biggest worry was how I was going to fit in and to begin with, that wasn’t easy, something any teenage girl can confirm. One day a classmate asked me along to football practice and that was what saved me. It turned out I had a knack for it and as she was their top player and because I was with her, I was drawn into the gravitational field of her popularity. I was in.
On the field, nothing else mattered to me but playing as hard as I could. There were no limits in how far I pushed myself; running, tackling, sliding in the mud, falling face down, gasping for air with hands at my sides, head down, my ponytail almost touching the ground. I loved it: the smell of grass, the sweat, the pain in sore muscles and chest from breathing the cold autumn air, the contact, the fouls and the pure pleasure of the perfect curved corner sailing past defenders and teammates, above the goalkeeper’s hands to hit the net behind her.
Several times a week, I jumped on my bike to go to the neighboring town for training, and on the weekends, I took part in tournaments. This was my life. I improved rapidly, didn’t do anything else in my spare time, and I soon came to see myself as a football player. And it paid off. My talent and killer instinct were spotted by a scout and my friend and I were both picked to train with the national youth squad.
My father was an avid football player and fan, and yet I lost count of the number of times I heard him say, “Girls can’t play football!” How little that made sense to me: I was a girl, and I played football.
Maybe his refusal to accept my football hardened me in a good way. Standing in the rain, cold, tired, dirty, bruised, with a ripped shirt and two goals behind, I learned to bite down on the pain and fight, even though no one was watching.
Many years later, I used what I learned on the football field to take back my life. To push myself beyond limits. To never give up. It was the best training I could have for what was to come.
The first winter I was in university, age twenty, living away from home for the first time, my body collapsed. My kidneys had stopped working, my body bloated, and within two days I put on twenty pounds. I was examined by a number of specialists from oncologists to haematologists, subjected to a battery of tests and treatments, but no one could work out what was wrong. Nothing added up, and whatever treatment they tried only seemed to worsen my symptoms. My family stood around my bed crying, and the nurses looked at me with such tenderness, I could tell they thought I was dying.
The doctors were about to give up and let nature have its way. I heard what they said, but couldn’t take it in. How could anyone talk about giving up a life when the person was lying next door in a hospital bed hearing everything? A rheumatologist saved my life, diagnosing me with systemic lupus erythematosus, SLE, also known simply as lupus.
The reasons why SLE occurs are still not clearly understood. Presumably a combination of genetics and environmental factors triggers the illness, which makes the immune system attack healthy cells, tissues, and organs. This is what happened to me. My body turned against itself and was eating holes out of my kidneys. The daily ten-pound weight gain was all the excess fluid that could not be processed by my body and, with no way of being expelled, was being stored-up inside me. And that wasn’t all. At the same time, my spleen started deteriorating, something that nobody noticed back then. I would only learn that almost twenty years later, when I woke up from a coma.
Once diagnosed, I was told that I would have to live with the condition for the rest of my life. I would have to take precautions and special measures to make sure I did not trigger further attacks caused by the dormant SLE, and I had to monitor any symptoms constantly. I had to make sure I got enough sleep, avoid stressful situations, and keep out of the sun. And as if this wasn’t enough, I would also have to give up playing football. This was a big blow, but the doctor told me that my body was too weak and my bones and joints too fragile for a rough contact sport. I did not accept his verdict, but I kept quiet.
The medication worked, slowly but surely, and I recovered. But this was not the identity I had carved out for myself, and with my young body beaten up and swollen, and a mind in turmoil, I plunged into an existential abyss. What was to become of me?
I spent three months in the hospital. It was tough. For much of it, while recovering physically, I was trying to come to terms emotionally with what it would mean to live with a chronic disease. My independent adult life was only beginning, and I had already got a glimpse of the end. This was a tough lesson for a young woman. But with it, I grew stronger and I came to see, pretty early on, that there is never one single way in life and if this was my path, I would take it and meet the challenges along the way. It did me no good to think of myself as someone living with a disease. Having SLE was simply who I was. It did not make me more or less of that person. Some people need glasses, others a hearing aid. Some live with diabetes, others with asthma. I just had to live with this.
I started to make plans for the future—to go back to university. But lying there in my hospital bed, I realized that I had to make a new beginning, something bold, to create a blank sheet for myself. I had to get off the island. Going to university in the first place was already quite a step for me. I had enrolled in a general science course, but I wanted more, or at least, I wanted something different. I decided to apply to study mathematics at a university in mainland Denmark. I received a letter of acceptance on my birthday. I couldn’t have imagined a better present.
And like that, I left. My mum worried and my dad didn’t see the point of moving so far away. They agreed it was like the other
side of the planet. In reality, it was two hours in a car. I felt great.
I had been the first person in my family ever to graduate with a high school diploma, and I’d felt the entire world was open to me. By going to university, I had also taken steps no other member of my family had ever taken. But it wasn’t easy. University was tough. It was an entirely new world. The people were different. The ways were different. The language was different. It changed me profoundly.
All my life I had felt slightly out of place. I belonged, certainly, but part of me was kept in a safe place where no one could gain access. As a child I never fully realized how different my academic aspirations were from everything in my working-class background. In my dreams I was reading, studying, and traveling. This was my secret, my personal hiding place, where I would run when things around me got overwhelmingly normal and I didn’t fit in. This was my sanctuary, hidden away from family circles. A place of understanding, encouragement, empathy, and adventure. It was also a lonely place.
Going to university made me realize for the first time that I could begin sharing this part of me with others. I met like-minded people and gradually let them in. I learned that being normal was always a matter of context, and, adapting to my new surroundings, to the people and the competitive environment of academic life, I began to feel as though I could fit in. There were days, however, when I thought I would never be able to make it and, like many others trying to break the glass ceiling, that my background, my upbringing, was working against me.
Everybody at university comes from somewhere. Everybody has a story. Some people are born into academia and come with strong family traditions. They float elegantly in the air like circus artists on the trapeze, weightless, showing no signs of stress. For the rest of us, it is more difficult. My first years were a hard battle and a tough test. But I made it and continued through my graduate studies. I met Peter and fell in love. He was different from any other person I had met, generous, knowledgeable, always putting others before himself, a safe place in a storm. He saw me for who I am and embraced me as I was. The better I got to know him, the more I wanted from life. Once again, my world grew bigger. Best of all, we became a family. I graduated, got a job, we bought a house. By the time our youngest, Daniel, was born, I was thirty. Life was great, but again I realized I wanted more.
The Blink of an Eye Page 3
