A wild scheme was planned. I had been working for a few years after my MSc in mathematics and art history, and had published a series of articles and a book, when I realized that if I wanted to continue with an academic career, I had to get a PhD. I pooled together what I had done already and made an ambitious plan to complete the degree program within a year. An evaluation committee decided it would be difficult, but possible. I got the grant and started to work like mad.
Peter and I made a pact.
“This is your year,” he said. “You will write your thesis, I’ll take care of the kids and everything else.”
Johan and Victoria supported the plan. Daniel was still a toddler. He was OK with everything.
By the end of the year I was beginning to feel the full weight of it. I hadn’t taken any break from my studies; no weekends off, no holidays. I was single-minded and determined, working toward my goal, stretching myself, pushing myself to my limits. It was a brutal regime, and while Peter took care of the children and they tried their best to understand that I had to work, even if they wanted to play, it wasn’t entirely uncomplicated and they were all looking forward to the end of it.
That was a very gray Christmas. Peter and Victoria did their best to decorate the house and bring in some Christmas cheer, but it was all pretty lackluster. I didn’t notice. I was too busy writing. Christmas morning came and I was still at it. On New Year’s Eve at half past seven, we drove to the university, all five of us, and printed the entire thing. I was done. Completely done and utterly exhausted. And as I looked up after all those months of hard work, I saw my children as their mother, and not as the stressed-out doctoral student I had become. I made sure that we celebrated the coming of the New Year in style.
A few days later, when I had officially handed in my thesis, we left for a two-week holiday in the Canary Islands. It was warm and sunny, relaxing and restorative. Walking toward the beach, down the steps carved into the rocks, Victoria held my arm with a firm grip as we walked together, like one.
“I really like it when you are not writing your thesis. Now we can finally count the steps we climb again,” she said.
And we did. I was badly needed. It had been tough on everyone. I had been missed and now I could finally be a mother again.
Living with SLE, I had very few side effects compared to the average SLE patient. However, one late-autumn morning in 2011, I had this overwhelming sensation that pouring tea from the teapot in front of me was insurmountable. For the past three months, I had experienced severe pain in my joints, in my hands and arms in particular. Not to be thwarted, I thought about various ways to overcome this challenge. What if I moved our teacups next to the teapot? Or if I tilted the teapot without actually lifting it? That would work. But it didn’t. I couldn’t pour the tea and in the end, I had to ask Peter to do it. I was devastated. Was this merely the beginning of what was to come? A year or two from now, would I have difficulty lifting my books, tying my shoes, or even combing my hair?
As Peter watched me struggling, he told me about a colleague he had met recently at a conference. She was a vegan. She had lived with severe pain in her joints every day until she changed her diet, avoiding all animal protein. Now her pain was gone. Completely.
Peter had mentioned me to her, how I had not been able to lift even small things for the past few months, particularly in the morning. He never asked specifically about her medical condition. It could have been lupus arthritis or a crueler rheumatoid arthritis, which causes severe destruction of the joints and in many cases disables you through deformities of hands and feet. She was a scientist, a highly skeptical one it turned out, who did not jump on the bandwagon of dietary fads. She had done her research, read the literature and dismissed most of it. But the little empirical evidence in the few serious scientific studies she had found made becoming a vegan worth a shot, she thought. And it changed her life.
“Why don’t we try it,” said Peter, tirelessly trying to cheer me up. “I’ll do all the cooking and will support you in any way I can.”
That’s my husband, always looking out for me, eternally supportive. But no. I wouldn’t do it. If this special diet had any effect, science would already have told me. I was a skeptic.
I grew up eating meat every day. The most natural thing for me to do as a teenager coming home from school was to have a couple of slices of rye bread or white bread with pig’s fat, fried onions and sausage or paste made from pork liver. Before I went to high school, I don’t think I had even met a vegetarian. My parents used to order half a pig or half a cow for the freezer once or twice a year, providing us with protein for many months ahead. Admittedly, I had grown out of the need for pig’s fat and pork liver paste a long time ago, but I still liked eating lamb, beef and cheese. Things I was not prepared to give up.
“Let’s do it,” Peter persisted. “Let’s give it a try.”
He suggested several dishes and asked me to go along with this idea for a couple of weeks. If I saw no difference, then we could revert to being carnivores. Thinking of it like that—an experiment that we could monitor—and seeing his deep care and concern, I agreed.
An interesting and challenging couple of weeks were ahead of us. Meat, butter, eggs, cheese, milk and traditional fillings for our sandwiches were replaced by soybeans, green beans, hummus, avocado, salad, and bread baked with olive oil and soy milk. On the morning of the fourth day, my joint pain had completely gone. I could lift anything I wanted. I could do anything. I was ready to take on the world anew. I got my hands back. I couldn’t believe it.
As if to prove something to myself, I grabbed my sketch pad and started to draw. I had been drawing since childhood, and I loved it with a passion. I had been so afraid of losing it. I was so relieved, tears slipped down my cheeks. I still had it.
Some of my happiest childhood moments were spent drawing with my paternal grandfather. After he died, I continued to draw and paint on my own and as I got older it helped me, as it kept alive in me the cheerful, worry-free childhood days that I spent with him.
He was always so encouraging, and even when I attempted to draw difficult things, he had the right words for me. I particularly remember a horse.
“That’s right,” he told me. “Look at her legs, Rikke, and how she moves. Look at how she moves her muscles. She’s a strong creature. Powerful. See if you can find that with your pencil. Feel it. Feel how strong she is. Be her, when you draw her and never give up, even though it sometimes feels impossible.”
It was a lesson for life. He never gave me a hard time, but equally he never let me off the hook until I had really put some effort into it, and regardless of how my drawings turned out, he always told me how proud he was of me.
“There you go!” he said, as I showed him my horse that looked like a potato on stilts with a strawberry head. “That’s what a proper horse looks like.”
In my third year at university, I had taken a sabbatical from my scientific studies and enrolled in art school. I loved every single bit of it, and to have the opportunity to explore my creative potential felt great. In fact, I had liked it so much that I seriously considered applying to the Academy of Fine Arts, but I was still attracted to the sciences and so, combining my passions, I eventually graduated with a joint degree in science and art.
From a very young age, Daniel loved to express himself with pencil and paper, just like I did. In the months before I fell ill, I taught him to draw with perspective. And while I was still in a coma, unaware of anything going on around me, he drew a perfectly proportioned shark and hung it on the wall next to my bed. He wanted to show me that he now knew how to do the things I had taught him. He wanted me to be proud of him. He wanted me back. My youngest child was reaching out to me through our private language of art, his perfect shark an expression of love, even if he wasn’t sure I would ever see it.
All my life I had learned to keep going, to give it everything I had, to never stop fighting until the final whistle blew. But now it wa
s not up to me anymore. My adult life had been different from anyone else in my family. I had graduated from high school and university, I had a PhD in science and pursued an academic career in top universities around the world, and now I was even a vegan, something as alien as a Martian to my family. I was not supposed to end up here in a hospital bed, not yet forty.
I was supposed to live a long life. I was supposed to bring up my children and see them safely into adulthood. I was supposed to grow old with my husband. Now, none of that was certain.
four
Blinking
I opened my eyes with great difficulty.
Everything was hazy, almost no light coming in. I tried to keep them open, but it was hard and it hurt. Peter was sitting next to me and telling me about the snow outside the window. It sounded beautiful. I loved the sound of his voice.
“Winter has come,” he said.
The kids and their father loved the snow. I wanted to see it, wanted to tell them to go outside and play. But even though I could formulate those words and thoughts in my mind, I couldn’t summon the power to speak. I could not move my head or my hands. I could feel tubes in my mouth, but no other part of me. Where was I? What had happened to me?
My alarm did not register with Peter, who continued talking about the snow. Couldn’t he see that I was trying to reply, that I was trying as hard as I could to get his attention? I tried to shout, to whisper, to wave. But everything in me was locked.
I was getting really scared now. I was doing everything I could to communicate, but the only thing happening was a slight dilation of my pupils behind my barely open eyelids. Was this really all I could do? Peter finally stopped talking. He looked at me and as he realized that my eyes were half open, he stopped, took a deep breath and leaned in closely. I dozed off.
I don’t know how long I was gone. I had no sense of time. When my eyes opened again, ever so little, the bright light felt like tiny shards of glass shooting straight through my irises, deep into my brain. The pain was almost unbearable. I wanted them to close. I just wanted peace.
“Rikke, you are in the hospital, in intensive care.”
What was he talking about?
“You’ve had a bacterial infection and you’ve been in a coma. But now you’re back,” he said.
Later, I sensed that I had woken up surrounded by darkness. I tried to open my eyes, but I forgot how to do it. Should I push or pull my muscles? Was it like doing push-ups? Yes, that was it. I just had to put some effort into it. But there was nothing I could do. My eyes remained closed and it was difficult to keep focused. His voice became more a comforting sound than actual words that I could take in. Meaning dissipated. I slowly drifted away.
My eyes opened again, like they had a mind of their own. I could hear Peter talking to me. I wanted to tell him I felt safe by his side. But I couldn’t speak or move a muscle. I could hear my voice shouting inside my head, and I wanted to scream. It was like the most horrifying claustrophobic nightmare, except I was awake. Maybe I was suffocating. My bed felt like a coffin. Perhaps everybody around me thought I was dead and they were about to bury me without giving me a chance to tell them that I was still alive. Was this, in fact, the end? I sank back into the darkness.
This happened over and over again. Each time Peter told me what had happened, I was swathed in confusion. I was disoriented; I didn’t know why I couldn’t move, why no one was reacting to my thoughts. I couldn’t understand why I was unable to speak. I didn’t know why my body wasn’t obeying my orders.
The only thing I could do was to listen and watch and hope someone would notice that my eyes were slightly open and would guess what I was thinking.
There are no Hollywood moments in waking from a coma. When you imagine it, you think of someone waking up, asking, “What happened? What did I miss? What am I doing here?” But in real life, in real hospitals, waking up is a process, a fragmented jumble of impressions, lights, and sounds. It is painful and noisy, so the urge to close the world out forever becomes overwhelming. You don’t want to wake up; you would rather shut it all out and go back to sleep. You aren’t conscious the way you are when reading a book, watching a film, having dinner with your family, or taking care of things at work. You drift in and out of consciousness, and you can’t control it.
What took me a few seconds before my coma could now take an entire day. Trying to remember my own name, for instance, even when I had just heard it; trying to remember what someone had only recently told me, that for a fleeting second I knew I should try to hang on to. Those were overwhelming challenges that completely drained me of energy, making me sink into a deep, hard, dreamless sleep for hours. I was operating on a different timescale and in a completely different environment.
It took a long while before my eyes opened fully and in the normal sense of the word. At first it wasn’t a conscious act. It simply happened. I knew nothing of it and to my family it was all going painfully slowly. I had what the doctors called sunset eyes. My eyes did not close. They were nothing but tiny slits, barely open with only a downward gaze, letting me peek into a world I had not been a part of for ten days. Or rather, it was a chance for everyone else to look in, to see if there was anybody in there.
The initial sense of joy everybody felt from the first minute my eyes had started to open quickly chilled. The doctors warned Peter not to get his hopes up. Sunset eyes were typically seen in patients with severe brain damage after long-term coma. I might have some sort of awareness of things around me, but I would probably never be able to talk again, to have a normal conversation, to eat by myself, to do everyday tasks, or even to recognize him or any of our children again.
And if I ever did wake up from this, if I ever recognized my family, if I ever started talking, the chances were that I would be a different person. The kind of damage done to my brain was linked closely to personality. I might be aggressive, less loving. I might shout and cry, not knowing why. I probably wouldn’t even recognize myself. And this was if things went really well.
Peter had seen the images from the many scans. He had seen the dark spots deep inside the center of my brain, and he had gone quiet as the circular grey area grew bigger on the right side, a definite sign of internal bleeding. Blood clots and bleeding at the same time. Not a good sign. Whichever way you looked at it, this was bleak, but Peter took it and filed it and then ignored it, as he saw what no one else could see: a tiny light in the dull darkness of my downward gaze. Maybe there was still hope I would find my way back.
My carers and family members quickly became used to my downward gaze. But then tiny changes began to happen. Peter realized that my eyes closed gently if he asked me to close them. Sometimes, briefly, he noticed that my eyes moved slightly toward the direction of the room from where he was talking. He felt hope growing inside his chest. He thought he could detect signs of fight in my downward-looking eyes; see the stubbornness, strength, and resilience that had been my calling card since I was young. He wanted to believe it. The whole family needed to believe it.
In the horror of the first few days, when no one knew whether I was going to live or die, Peter had been advised that, while the scientific evidence was inconclusive, some medical experts believed that people in a coma responded to familiar voices.
“You never know,” one doctor said to Peter. “She might hear you and this could be the thing that makes her want to return.”
Noticing the tiny reactions in me, Peter and the children now had something to do, something that could help them to keep sane and give them a sense of purpose. They could talk to me and watch for my reaction, monitor the movement in my eyes, make a contribution to my recovery. They had derived comfort in talking to me even in the absence of response or reaction, but from the moment I started the long process of waking up, there was a new impetus in their mission. Peter had read to me every day, using every waking hour, every break between check-ups, treatments and tests. When I was still in deep coma, he read me Jane Austen’s Pride
and Prejudice. I loved that book and knew many passages by heart. Perhaps, he thought, it would trigger my sleeping brain to listen to something familiar, something associated with happy memories. At least now he had reasons to believe that something would get through to me. The children were also enlivened by my progress and each afternoon or evening took turns reading out all the new letters, cards, stories, and poems that friends and colleagues had sent. They told me what happened at school, what the teachers said and what they had eaten for lunch. They asked me questions, they sang to me. All this created a bubble, an illusion of safety, an artificial haven, and a world in which you were talking to your mother and she was listening. Even if there was no response.
They were now living with hope. I was still oblivious to everything, except, every now and again, I instinctively sensed their presence.
For the children, life was now a process of constant adaptation. They were coping as well as possible in such a situation. One of Peter’s two sisters had moved in to our house to be with them. She was pregnant and had a daughter Daniel’s age. She lived a four-hour drive away, she had a busy life and an impending work deadline, but she came anyway and was doing her best to make life work. Daniel and Victoria went to school, but they were ghosts at their desks, waiting for the day to end so they could dash to the hospital to see me. Johan stayed at home with his aunt, his life in limbo, uncertain when he would return to school in Hong Kong.
The Blink of an Eye Page 4
