The Blink of an Eye

by Rikke Schmidt Kjærgaard

  “I’m sorry, you’ll have to excuse me,” I tried again. It was the shortest birthday party ever. But it was the best. They all helped me to my room, tucked me in and left quietly. I fell asleep within a heartbeat. Hours later when I woke up, I felt the happiest I had been in a very long time.

  Change was in the air. After the cake, people started getting practical around me. The focus shifted toward getting me home permanently. I felt different, too. I looked at the newcomers, some in wheelchairs, some in beds, unable to move or talk. I was feeling better, stronger, more optimistic. I was growing out of this place and it was time to move on. It felt reminiscent of the time when I realized—and my parents did, too—that I had outgrown home and was ready to move out and become independent. It had been a powerful feeling back then and was even more so now.

  Peter and I talked to a social worker. This was a first, but now I was part of the “system” and she was here to help me make the transition from long-term hospital patient to being on my own, living at home. There were all sorts of things to consider. There were medical bills to take care of, we had to organize help at home and start thinking about finances. Was I entitled to any benefits? Could Peter support us on his salary if not? Could we keep the house? Could I keep my job? Would I ever be able to work again? How should I react if I felt ill? Who would make the tests and collect all the blood samples? So many things to worry about. So many clear and present dangers. And yet, I couldn’t be more excited.

  And then one day, it was time. The chief physician was smiling in a way I had not seen before.

  “Rikke,” she said, “you’re ready. Somebody else needs your spot here far more than you. It’s time for us to let you go.”

  I was going home. I knew from the chief physician that most people at the rehabilitation center were afraid of going home. Afraid of what they might not be able to handle. Of what they had to face on their own.

  Not me. I couldn’t wait. I spent all day getting ready to leave. Nurses and therapists helped me pack and made sure I was informed about every little detail I needed in order to move on.

  I would not lose contact altogether. I was sent home, but not yet formally discharged. I was given a phone number to call if I needed assistance, but I would be half an hour’s drive away and would rely on someone else to take me if I needed attention. I was overwhelmed by the level of information, feeling I was forgetting something critical. In reality, everything followed protocol and was under control.

  At half past four in the afternoon, Peter walked in and then we were heading home—for good. I thought about the first few days at the rehabilitation center when I was so miserable that the only thing I could think of was how to get back to the safe confines of the ICU. I thought about how much things had changed, how much I had changed. I was stronger now. The next step felt perfectly natural. I was like a bear coming out after a long winter’s hibernation. I had said goodbye to patients and staff during the day, and now to the nurses on the late shift. It was an emotional day, but also wonderfully practical. To me my life had changed, but to everyone else at the rehabilitation center, it was just another day and there was work to do. There were hugs, a few tears and then Peter took my hand. “Are you ready?” he said.

  “Yes.” I smiled. “I am.”

  And as I walked out of there, smiling, holding Peter’s hand, I promised myself that this was it. I would never go back. I had never been happier to be going somewhere else. In the car, Peter played a song for me from the new album by one of my all-time favorite bands, EELS. Since my student days I had felt a strong connection to Mark Oliver Everett’s music and lyrics, the sincerity and authenticity of both the light and the darker sides of human existence that only comes from personal experience.

  The first song was “The Turnaround,” about a person who’d had enough of being written off and decided to head out to a better life. I closed my eyes and let it all sink in; everything that had happened since the violent bacterial attack, the coma, being locked in, desperately trying to communicate that I was there, blinking, using the spelling board, learning even the most basic bodily functions all over again and now this, driving home with Peter. I was feeling wonderful, glorious.

  The fifth of June is a special day in Denmark, celebrated as Constitution Day. But to me it will always be Independence Day—the day I returned to life, to my home and my family. I was finally free and in charge of my body and my life again. As we drove up our street, the flags were out.

  As we parked in our driveway, the children came running out. Johan opened the car door and they all helped me out and into the house, bubbling with joy.

  “Mum! Mum!” they cried as they huddled around me like happy penguins. There was so much to say, but we needed no words to tell each other what we felt.

  I wanted to take it all in, to keep every single thing as a precious memory, to see, touch, feel and listen to everything and everyone. I wanted to walk around the house, go into the garden, to eat and drink; I wanted to sit in my favorite armchair with our cat, California, on my lap. But all I could do was to go straight to bed. This was where it had all begun on the first of January. But now, after more than five months away, it was again a happy place.

  A couple of days after getting home, I sat down at our kitchen table and wrote an email to all the friends and family who had supported me over the past months. It was something I had wanted to do for a long time, but I could not until now. It took me hours and I had to think about every sentence. I had to write with tender fingers and was really only able to use the thumb on my left hand. I had lots of flowers and cards around me; I was wearing my own clothes, while the children were somewhere else in the house and Peter cooked our dinner. I looked out of the window at our lush, green garden. The sun was shining, and I couldn’t help smiling. It all went into my letter.

  “After 153 days, I’m home!” I wrote. “I have used every word, every thought, every drop of love and friendship from you to fight this.” It was difficult for me to express how much it all helped me to get back on my feet. But I told them I had been through hell and it wasn’t pretty, and that all their cards, letters, and emails from near and far made me see the light at the end of the tunnel. Everything helped me when the loneliness became almost too unbearable, when my strength was lacking and the constant struggle seemed pointless.

  I explained that we were supposed to be in Berlin over the summer. Everything had been planned carefully last autumn. Peter had been offered a visiting professorship and at the time we were looking forward to a new family adventure. But as a result of all we had been through, we changed the plans and were now spending our first full summer in Denmark in seven years. Looking back, our life had been a series of changes, moves, new towns, new houses, new jobs and new schools. But everything had been planned meticulously. Nothing had been left to chance. We had done everything together and because we wanted to. We had taken the opportunities as they came along, but we were always thinking long-term of what would be best for our family, for the kids and for our careers. We had been in charge of our lives. Now life was in charge and we had to change accordingly. That was new to us.

  I finished my letter. Dinner was almost ready; time to call the kids to set the table. But perhaps there was still time to go and sit in my favorite spot in the garden under the warm evening sun.

  I didn’t have to ask anyone’s permission. I didn’t have to tell a nurse where I was going.

  I could just go.

  eleven

  Living

  I was weak, I had to gain weight and I still needed lots of physiotherapy and medication. It was going to be a very long time before I could ride a bike, go for a run, drive my car, or get back to work. But I could get started, all in my own time. I could go with my family to a strawberry field and eat as many berries as I could manage; I could sit in the shadow of a tree and read a book; I could sleep in my own bed, next to Peter, and enjoy a Sunday brunch with the family.

  But most days I too
k life as an adventure. I was overwhelmingly grateful. I noticed everything. I enjoyed the sunlight flickering in the fur of our sleeping cat. I listened to our children talking about what happened during lunch break at school. I watched Peter sleep. I was grateful for all the little things I had taken for granted, all the things that make up most of our lives.

  Now I stopped, looked, listened, took in the smells: the flowers in our garden, newly baked bread, my children’s hair. I loved it; I couldn’t get enough. I wanted to get the most out of everything. I didn’t want to miss out on anything. There was a new intensity to living and everything it entailed. I had received a gift: the gift of appreciation, of not wasting all the everyday adventures that are right in front of us. The gift of making every single day count.

  At the beginning, everything was new. Hospital had been so different and even though I had learned to live in hospitals as if they were my home, they weren’t. Now everything at home was challenging and although Peter and the children helped all the time with even the tiniest things, I felt as if I was fighting like never before. Everything exhausted me. Walking down the hall to go to the bathroom, managing my way to the conservatory, or checking the mailbox by the end of our drive—it wore me out and I was constantly looking for places to rest.

  One of the things I remember best from the first day was sitting down, eyes closed, and just listening to the life of the house, noises I had never noticed before: what it sounds like when sneakers are kicked off in the hall, tea is being poured, or the difference between a cat coming and going through a cat flap. I learned to navigate the sound universe of my home and knew exactly where everyone was and what they were doing, at least as well as if I had my eyes open.

  I had a nurse come once a day, but apart from that we were on our own. She checked my bandages and medication, and asked me quickly how I was. She was sweet, but on a tight schedule and out of the door before I could answer her question. It was such a huge difference from the hospital, where I had staff around me all the time and I could always call for assistance. I had never had to wait more than a minute. Now I had to wait for Peter or one of the children, or I had to do whatever I wanted or needed myself. Peter was helping with most things, but I really wanted to do everything myself. It helped. I got better and stronger every day. I even started to eat more, although I still had no appetite. But I knew I had to get on with it if I wanted to get my strength back. Friends and family came around and I started to hear news from work. I enjoyed the visits, but tired easily and was poor entertainment.

  I wanted company, but also had to accept that everybody else was leading their own lives, had to go to work and do their things. A lot of our family and many of our friends lived far away and couldn’t just come over for a cup of tea. I could write only a few lines a day, but loved hearing from everyone, to feel connected.

  When I was lying in my own bed, enjoying the wonderful feeling of a completely normal bed without strings, wires and alarms and thinking about how far I had come, I realized that even though I was permanently suffering from loneliness at the hospital, I had never been alone. There was always someone next door.

  Being alone was new.

  So I learned to let go. The children had to go to school in the morning and Peter had to go to work. At first, he didn’t like leaving me on my own, and I wasn’t too happy about it either. What if something happened to me; what if I fell and couldn’t get up or was unable to reach for the phone? And what if I suddenly got ill again, like on New Year’s Day, but this time no one was around to save me? But none of that happened and we both knew it had to be done. I had to start taking care of myself.

  I had always worked and never spent extended periods of time at home on my own. It was a new and very strange experience. I was too weak to do anything around the house and had to leave all the practical everyday stuff to the rest of the family. California and I had a lot of time on our hands and we did all sorts of things in our tiny world, exploring all the good places for a snooze and finding exactly the right spots in the house and the garden. Together, we read one book after the other and all the time I was getting stronger.

  Every other day I was picked up to continue my exercise and physical therapy program in town, at the local rehab center. I joined a group of people who had suffered strokes and were also trying to get their bodies to follow orders again. There wasn’t anyone who had experienced exactly what I had, but all of them had their own stories to tell. Many shared them, some were silent. Most of those recovering from strokes were over seventy. I hung out with the “younger crowd,” a couple of guys in their fifties, and I enjoyed their company. We set ourselves targets and could beat the “oldies” most days by at least two push-ups and eight minutes on the bike. Piece of cake.

  I knew I had been changed physically by the bacterial infection and all the implications that followed, but the scale of the consequences were not immediately obvious. My shock as I struggled to do the laundry, to make tea, to take a short walk, or sometimes simply trying to stay awake was profound. It would take a long while, years perhaps, for me to get back into the shape I was before the coma—and maybe I would never reach the same level of fitness, or have the same kind of stamina as I’d once had.

  I might be on lifelong medication, always having to carry antibiotics with me to be on the safe side. When I finally came off my medication, if I did, Peter would have to learn how to inject a life-saving shot of antibiotics in my leg, just in case. I would never regrow a spleen, and although a vaccination against pneumococcal infections provided me with very good protection, it didn’t match the natural biological defense I lacked. I had to take certain measures and I would have to learn to adapt.

  And then, of course, I had to adjust so many daily routines. The most obvious ones were: buttoning my shirt, fastening zippers, opening jars, and picking up coins at the register. Sometimes I asked Peter to take me to a shop, to make me feel I was a normal human being doing normal things. I liked getting out, but buying things was also annoying, not only for me, but for the customers waiting in line behind me, unaware of why it was taking me so long to check out. I was often embarrassed, and I thought how unfair it was that I wasn’t given any extra space and time, and that people should understand right off the bat and be more patient.

  Then there were the awkward things, like not being able to get things out of packets, or not being able to pick up popcorn as the bucket got passed down the family line when we were watching films; shaking hands with missing fingers, or forgetting about my hands when pointing something out, only realizing too late that I had nothing to point with.

  When people discovered my half-finger hands, most of them turned away in embarrassment and either went quiet or started talking loudly about something completely different. I realized how difficult it was for most people to ignore physical disabilities, treat them like a natural thing, or simply to ask about them. I would have been glad to answer any question. Seeing someone grimace or stare out of curiosity without having the courage to ask me how I was—well, it hurt every time.

  I was beginning to look at people differently, starting to grasp how many around me needed that extra bit of help, a little consideration and appreciation of the challenges they were facing. I used to see a blur on my way back from work, on the train, the bus, at the school gates, shopping, or driving down our street. Now I started seeing people. I saw the sad girl, the single mother, the lonely old man talking to himself. I saw the person with a different complexion who was frowned upon simply because of that, despite having been born in Denmark, or the political refugee trying to make sense of an affluent, but cold, country.

  I noticed people moving away from the person in a wheelchair, those who stared at two women holding hands, shaking their heads at others for being who they were. I saw how many of us are different, how many of us faced everyday challenges. I saw how invisible these daily struggles could be to others. And I came to see how easy it was to make space for the differences, to reac
h out and to give myself in a smile, a nod, a silent demonstration that it was OK to be different, to take time, to be who we were.

  My new exercise buddies made me appreciate another thing. I now belonged to a community. This came to me as quite a surprise. In my previous life I had never given it a thought that such communities existed, people who had nothing in common except they were brought together by accident, literally. Now I found myself sharing something with people who would otherwise have been completely invisible to me. We mostly came from different backgrounds; we had been doing completely different things in life before our paralysis; we lived in different parts of town, moved in different circles, had different friends.

  But here we were. Twice a week, thrown together by a matter of chance, and what tied us together was the intensity of our experience and drive to recover; sharing something that only we could truly understand. While we could talk to our loved ones about what we had been through, they would never really understand what it had been, and was still, like. Our experiences were not something you could comprehend with your mind. You had to have been there, you had to have experienced it in your body. You had to have felt it, to have lived it and, in some cases, to have died.

  In one way or another, we had all been there, on the other side of the tubes and wires, looking up from the bed. We had seen and felt the alarm and distress of our friends and relatives, breathed in the serious air of the doctors, the bustle of the nurses. We shared the existential fear in our bones, the sense that this is it, that life is or might soon be over.

  We had stood on the edge of our lives, trying to come to terms with what might be. We had wrestled with wondering if it was OK to let go, to close our eyes and not know whether we would ever open them again. And then as we recovered, becoming well enough to know we had survived death, but somehow were still so weak our bodies failed to do the things they had always done.