During the first few weeks, my mother and sister came to the hospital every day, which entailed a two-hour drive each way. Peter’s parents had also come every day and Peter’s other sister as often as she could. But apart from making sure the children were OK, there had been little to do other than be there, standing, sitting, talking to each other, waiting outside my room. With the exception of Peter and the children, visits had been limited and brief.
No other family, friends, or colleagues were allowed. But their presence was visible. Messages full of love, hope and anxiety kept arriving in large numbers along with gifts, poems, and flowers. Lots of them. There were so many that the nurses didn’t have time to change the water and at the rate flowers had been coming in, they didn’t have enough vases for them either. Later, I was told that I set the record in Intensive Care for the volume of flowers in one room. I was missed and I was loved. In the early stages of waking up, I did not notice anything. But as the weeks turned into months on my long journey back to life, this helped me. I was finding that extra bit of strength I needed to go on, to continue, to fight. Feeling loved is the most potent healing power.
And yet, twelve days after arriving at the hospital, I still wasn’t responding. Every now and again, my eyes would open or close slightly. But that was it. Perhaps the doctors were right. There was too much brain damage, and I would never truly wake up and be myself. Growing increasingly desperate to get any kind of reaction from me, Peter thought about what else he could do and decided to ask the doctors if a good friend of mine might visit. She and I used to share confidences at work, joys and frustrations, things we were proud of and things we would never talk to anybody else about. The doctors agreed to it and Peter called her. He tried to prepare her as best he could, gave her all the details on the phone, told her about the poor odds, how wrecked I was, the way my fingers looked, his desperation and pain.
Beyond the medical team, she was the first person outside our small family circle who was allowed into my room. She had thought she was ready, but seeing my totally wrecked body for the first time and all the technology that was keeping me alive, she was stunned.
In a soft voice, Peter told me who had come to visit. But there was no reaction, just as had been expected.
They stood next to my bed talking to each other. It is difficult to have a normal conversation in a hospital room when you have a person in a coma next to you. My eyes might have opened ever so slightly, but there was still no reaction, no movement at all. I didn’t blink. I might as well still have had my eyes closed. They talked about all the letters and cards, the flowers, what people at work were saying and thinking. She shared how my colleagues were still in shock that something like this could happen to a young, healthy person, that those with young families themselves were hit especially hard; it so easily could have been them. She talked, too, about the silence that fell in the department when news about my current state was sent around, and how people got together to share their thoughts. Engaged in conversation, they no longer had their full attention on me.
This was when it happened.
I slowly opened my eyes and looked at them.
Peter grabbed her arm and with eyes fixed firmly on me, he nodded in my direction. They looked at me, both with an overwhelming sense of witnessing a miracle before their very eyes. My sunset eyes, the passive downward gaze that heralded a defunct brain, had changed.
I looked up, straight at them.
“Rikke! Can you see us?” said Peter, barely breathing.
It seemed like forever before anything happened, but eventually I blinked.
“Sweetheart! Do you understand what I am saying?” I blinked again.
“Do you see who is with me?’
I recognized both of them. I understood what they were saying, and I was able to answer his questions by blinking.
No one had hoped to see such a dramatic turn of events. This was the first sure sign that I had not lost all my cognitive abilities, that I was able to understand simple questions and that I could recognize people around me. Peter had hoped this was the case when he tried desperately to interpret my tiniest movement, but he had not wanted to instill false hope in the children and had kept it to himself. But now he finally had something to tell. After almost two weeks of terror, there was some good news at last.
The magical moment lasted for only a couple of minutes before I drifted back into my private darkness. They hugged with tears in their eyes, conscious not to disturb me, overpowered by what they had just witnessed. After that she left, and Peter went to call the children.
I had re-entered my life. The gradual process of putting myself together had begun.
When Peter came back in the afternoon, the nurses had raised my bed slightly. My gaze was fixed on him when he entered the hospital room. It was an exhausted gaze, but a decisive one that wiped me out. I soon fell back to sleep. I was hardly awake during the day. I would open my eyes for a few minutes and then sleep again for hours.
Over the next week, my mind moved constantly between a conscious and illusory state, trying to find answers and sense in my situation. I learned what had happened again and again. People around me were patient and methodical, going through details over and over. It didn’t seem to make much of a difference. Each time I was surprised, confused, shocked, terrified, and saddened. They could not build on things they had already told me, but had to start all over again every time.
My short-term memory was completely gone. I couldn’t remember from one moment to the next. This is perfectly normal following brain damage and long-term coma. You remember your first day of school, but what happened twenty minutes ago won’t settle. But for me everything—past and present—was a blur and only a very few things made sense. I knew Peter and the children. But I had no idea who all those other people were, running around me, checking things, drawing blood, and talking to me.
As I woke each time, at first the only things I was aware of were humming sounds from machines, beeping noises, nurses and some doctors coming and going. But I was never sure. And then all the commotion, loud noises, shouts, banging doors, running, panic. I had no idea what I was doing there. I had no idea what had happened to me. No idea why I couldn’t move a muscle, why I couldn’t move my lips or blow air through my mouth. I had no idea why no sound was coming out and I didn’t know what was going to happen. My body was my prison and my brain was no help. All I could do was lie there, totally still, helpless, waiting while the thoughts haunted me. Was this the end? Was this it? Was this now my life?
Peter kept telling me over and over again where I was, what had happened, and that I shouldn’t be afraid of anything. But I was afraid. Every time I woke up and he wasn’t there, I was terrified. Where was he? Why wasn’t he there? Who were all these strangers? Why couldn’t I move and talk? I often cried when I woke up alone. Tears were running from my eyes, with no sound, because I couldn’t say anything. I was screaming on the inside for him to come. Nobody could hear me. Nobody could understand. I was trapped, panicking, terrified, and losing control until he would return. He might have been to get something to eat or to catch a few hours of sleep. He was never gone for long.
But a few minutes felt like forever.
I was locked inside my own body and had to come to terms with a different life. I would never be the same person again. I spent my days sleeping and thinking. These were the only two things I was still able to do on my own. I did a lot of thinking. Not the kind of deep philosophical thought about the meaning of life. It was fragmentary and personal, pieces of my past, flashes of memories, feelings, episodes, tiny moments of life with my family, friends, and colleagues making me sad, warm, or fuzzy. I was grasping for scraps left over in a brain battered from scores of blood clots and cerebral hemorrhage.
I was fighting for what was left of me, trying to keep myself intact. I was hoping still to be a bit of the person I was ever so slowly beginning to remember, stuck in my hospital bed with only two options of eith
er opening or closing my eyes. My life was a puzzle and I was trying to put it back together, but a lot of the pieces were missing, and many of them, it seemed, were lost forever.
It took me weeks before I began to understand what had happened to me. I had lost my memories, my bearings, and my sense of self. I could not move, I could not speak. Even when I tried as hard as I could, I had no contact with my hands or my feet, my arms or my legs. I was unable to shake my head.
Apart from sleeping and thinking, the only other thing I could do was to blink. This became my link to the world. A nurse suggested using my ability to blink as a mode of communication. The code was easy; even I could remember it. One blink for no. Two for yes. I guess she figured that the likely answer to most questions was no.
This changed everything for me. I couldn’t initiate a conversation or ask any questions. But I could participate, I could make a contribution, and if people asked the right questions, I could even have things my way. The trick was to get them to do it.
I needed help, and I needed a tool. This was how the spelling board entered my life. It was new to me, but to the medical staff working with patients who are paralyzed, it’s a standard device and was brought to me now that I was able to communicate with the world. It is the simplest thing: the alphabet on a piece of cardboard. But it was just what I needed to let the world know what I was thinking.
Using it was no easy task, however. First, I had to get the attention of whoever was in my room if I wanted to say something. How do you do that if the only thing you have to communicate with is your eyes? I tried looking in the direction of the spelling board or looking away, when people looked at me, and then quickly looking over to where the board was supposed to be. I needed to know where it was. Sometimes it had been moved by a nurse tidying up, or by Peter, who didn’t think it of particular importance where it was, as long as he knew. But I had to know. This was my only lifeline to communicating. This was my first step in interacting with the world again, and I had to know where the board was, so I could make people pick it up.
When they finally did, I had to follow someone’s finger moving steadily from left to right, row after row, not blinking until it reached the particular letter I wanted. I had to watch very carefully and did my very best. But even in super-annoying slow-motion, fingers often went too fast. And I wanted to say so many things at once, we missed letters again and again. Either I blinked too slowly or the person trying to read me missed a beat. How do you signal if you have to go back or start over when the only thing you can do is blink? The answer is, you can’t. Especially not with a wobbly short-term memory and severely deteriorating eyesight from scarred tissue.
So, when I didn’t give the signal in time or the speller sitting next to me didn’t pick it up, we had to start from the top again. Repetition. Reiteration. Reprise. It was wearing me down. But then again, so was everything else. And as with everything else, I just had to carry on.
Slowly, too, I began to make tiny steps of physical progress. Not every day and not things that most people would even recognize. I started to feel the pain everywhere in my body; I felt my own discomfort. My physical needs were simple: my nose itched or my arm hurt from lying in an uncomfortable position, sometimes for hours without anyone noticing. Imagine for a minute you have an itch on your back at exactly that point you are unable to reach yourself and nobody jumps in to help you. It doesn’t go away, no matter how long you wait. And there is nothing else you can do. You have a constant itch and can only hope something will happen. It might take half an hour; it might take two hours.
Then suddenly someone turns your body over, not paying any attention to your itch, and in the process, gets your arm stuck in an awkward position that immediately starts to hurt. The person doesn’t help you, and you cannot even communicate that you need help. You lie there for another couple of hours until somebody else comes along and starts drawing blood from your exhausted veins, oblivious to what you are going through. The relief of one pain was always the beginning of another and I remember thinking: This is now my life. I’m locked in and utterly dependent upon people, entirely at their mercy, and mostly as they come and go, they are not even aware of it. And I have to live with that.
My lips were dried up and I couldn’t moisturize them. It was painful, but I summoned everything I had left within me and eventually, after several days, I was able to move my lips ever so slightly. Unwittingly, this was a breakthrough in communication, and my family began to lip read. I was using only the simplest words: yes, no, and hello. Peter quickly learned to mouth-read “never mind.” This was my longest sentence. Hardly anything to impress anyone, but a huge step for me.
Most of the time, mouthing a few words or using the spelling board was really not worth it. I was fighting too much already, and I couldn’t afford the energy solely to tell Peter or the children that I was glad to see them. The children rarely used the spelling board. They mostly sat close to me, sometimes leaning in and sometimes guessing what I was trying to say. I struggled trying to remember people and what my children were telling me. Much to Victoria’s alarm, I appeared to have no recollection whatsoever of our cats. She told a story about how one of the cats was playing with a bird in our conservatory. Somehow I must have looked surprised and puzzled. Knowing how much I loved them and what a central part of our family life they were, she worried about how much more I might have forgotten.
Paying close attention to every little detail and word uttered about me, she collected and analyzed it all. When she reached a state of panic, she asked Peter if I was going to get my memory back and be able to remember our lives together. He told her that eventually everything would return to my memory. But he had no idea if that would be the case and in fact, he didn’t think it would. I now inhabited a parallel world, and one fine day, if everything continued to exceed medical expectations, it might align itself to the world everybody else was living in.
Typically, long-term patients in an intensive care unit suffer beyond the initial illness that brought them there. Their minds begin to play tricks on them and this happened to me. Apart from staying alive, my main job was to keep myself sane.
Sometimes, the repetitive cycles of being told what had happened to me brought tears to my eyes. I had no control over this. It was like my body remembered how to react to sad things. Every single time it was a shock to me and because my mind was a slippery slate, it washed meaning away as soon as I closed my eyes. I forgot and the next time Peter told me what had happened, it was new to me again. It was devastating for him to watch the same reaction of grief and surprise in my face over and over again. He was told the pattern was normal given the circumstances, but he couldn’t escape the grim thought that maybe the damage to my brain was indeed as bad as the doctors had predicted.
In my head, I started coming up with my own explanations about what had happened to me. Suddenly I thought I had the answer. We had been in an accident. A violent and terrible car crash in which Peter and the children had emerged miraculously unscathed, but in which I had taken the full force. And here I was. Locked in my bed for the rest of my life. Or: I had lost the twins we were expecting. I thought I could see it in Peter’s eyes that he knew it, too. But it was all right, I wanted to reassure him. We had survived storms before and we would get through this as well. Forcing dream-like states upon my consciousness, everything felt real. It was difficult for me to think straight, to pay attention, to understand what was going on around me. I saw and heard things that weren’t there, and I was frightened by my thoughts.
And of course, I was wrong. None of what I imagined had happened. No splintering of flesh and bones as our car crashed, no twins. I had not been driving. I wasn’t pregnant. My brain was simply searching for likely scenarios that had put me in the hospital. Venturing on the longest spelling journey so far, I managed to get through the combination of letters, “car crash,” “twins,” “lost them.” At first Peter was confused, but he saw the panic building in me, so he
took his time and through a long series of his questions and my blinking yes or no, he finally got it.
“None of that is real,” he said, trying to comfort me. “You are imagining things. But it’s OK, sweetheart. You will be all right. You don’t have to worry about anything. I am here to take care of you.”
Diving in past the tubes and wires, he did his best to hold me and, for the first time since my illness had separated us, I began to get a firmer hold of my situation. Maybe there was something in the memory of his touch that unlocked my memory of who I was. Maybe that caring, compassionate, most loving of gestures allowed me to remember who I was. I never asked about the imaginary car accident or miscarried twins again.
My body was still in a terrible state. The orthopedic surgeon had been to see me early on when I was unconscious, and as the bacteria continued to invade my body, he had made the grim assessment that if I survived, which he doubted, he would have to remove my hands from the wrist up, along with my nose, some of my face, and several of my toes. After seeing me again, he was more optimistic.
“I’m glad we waited,” he said to Peter. “Five years ago, we would have cut off the dark red and black areas as quickly as possible to prevent gangrene from spreading.”
Peter had got used to this blunt hospital talk. Nothing surprised him anymore and nothing shocked him. He took in the information and thought about how to communicate it in a gentler way to family members. The blackness of my limbs was slowly retreating as my body fought back, trying to recover lost parts.
“New research shows that the longer we wait, the more tissue we save,” the surgeon continued. “We’ll see how much it withdraws. So far, the prospects are good.”
He had seen it all, including a patient who had part of his face, his hands, genitals and most of his legs removed. But, as he said cheerfully, that patient was happy. He was alive, and he really shouldn’t be.
The Blink of an Eye Page 5
