I had no way of summoning my limited abilities to tell her how I felt. She saw on me a frozen grimace of pain, my facial muscles locked in an expression I wasn’t feeling. My body had no language and I had no proper voice. I could whisper a few words, but even then, you really had to know me in order to understand what I was saying. She had no patience for that. Throwing a quick standard diagnosis at me—brain-damaged and depressed—she could tick the box and get on with her job.
But this was too important. I had to tell the doctor that I was happy to take the next step, to feel and gain a little more control of my body. I felt so full of power and initiative. This particular rehabilitation center, I had been told, was my golden ticket to regain a life beyond hospital walls. She had to know I was not sinking into a black hole, and I was ready to prove myself. All that was happening here was that there was something wrong with my eye, and if she would only take a look at it, she would see it was no impediment to progress. Peter understood me perfectly. He told her that both he and I thought there was something wrong with my eye, that I wasn’t depressed. But she held her ground, insisted it was depression and that it would be treated.
Three days later, less than a week after arriving at the rehabilitation center, all I could think of was how to escape. I was going insane with the overwhelming desire to get out of there. OK, I couldn’t move much, which was a bit of a challenge. But there had to be a way for me to get hold of enough bed sheets, tie them together, throw them out of the window and climb down from the third floor to the street. Then I would have to find a way to hitch a ride back to the university hospital. If I had any chance of surviving this, I had to leave. Unlike my previous stream of delirium, I was totally in control of these thoughts, a sure sign of progress, if not a reflection of reality.
I told Peter, “I want to go back to the hospital.” A difficult sentence to say, and it took me some time.
“There’s a different doctor on duty today,” he said. “Let’s try and talk to her before we make any plans.”
Fortunately, this doctor was a good listener. Through a combination of verbal and non-verbal communication, we told her everything. How the nurses paid no attention to my cognitive abilities and how her colleague had ignored our concerns. We told her how my tears were a response to feeling so humiliated and we were pretty sure that humiliation was not the same as depression. And finally, somebody took me seriously, believing that there was something wrong with my left eye.
“Thank you,” she said. “I’m grateful for your honesty. We rarely have patients in this unit who are able to communicate how they feel. I am so sorry we have made you feel this way and that your concerns were not taken seriously. We need to get you moved to the Sensory-Motor Clinic, where you’ll be able to continue on your journey of recovery.”
And she was as good as her word. Two hours later, I was told that a room would be ready for me the next day. I cried again. But this time from relief. Somebody had heard me.
And I got a patch to cover my damaged left eye.
Settling in my new surroundings, I started to believe in progress. That first week had been absolute hell. But now, at the Sensory-Motor Clinic, I was finding my bearings. It was a new world, a land of opportunities. People were moving around in wheelchairs on their own, they were sitting in the common room—talking, eating, listening to a particularly gifted nurse as she entertained us on the piano. And then there was Michael.
I never learned all the details of Michael’s illness, but that didn’t matter to me—all I knew was that he was the coolest guy around. We had been in the same place, locked in a body that couldn’t move. I had my bacteria, he had his virus, and we had both gone down all the way, until there was very little hope and almost no prospect of recovery. But now Michael could walk. The first time I saw him he was standing tall, legs kinked, a body wobbling like overcooked linguine. But he was on his feet. I was impressed, intrigued, and wanted to tease every secret out of him.
“I’ll ask him to come over,” a nurse said. She told me how Michael had been sitting like me, unable to move a muscle. How he had been in a coma and through months of rehabilitation. Standing in the open door to my room, he introduced himself and we started talking. Well, that was a bit of an exaggeration. He talked. I wheezed.
“How?” I rattled. Thinking this might not make sense, I elaborated with a faint “What?”
“You simply need to believe that you can walk. Never give up,” he said and then outlined the regime of exercise and physio he had undertaken, telling me that any progress, however small, was significant and could be built on. He beamed with confidence and was clearly trying to inspire a novice. I was inspired. I wasn’t going to give up. I would be walking.
At that moment this was totally out of reach, of course. At my best I could sit in my wheelchair, but only for brief moments at a time, barely able to hold my own head. In fact, I had a head-rest that went around my neck, covering my ears, making it possible for me to look ahead, but not to my side.
Michael made me see that looking ahead was important in more ways than one.
Every patient here had suffered some kind of brain damage. And it seemed to be indiscriminate in its scope—children, young, old, strokes, accidents, injuries and a range of abilities. Some patients were able to walk and talk, others could only sit and stare—shells of their former selves.
I came to see that survival here was all about hope, the most important fuel to our brain-damaged engines. Without it, getting—or being taken—out of bed for another identical day of confusion and failure might have been futile, for both the patients and their relatives. If you woke up with the hope that today was the day you were going to pour yourself a cup of tea, or make a conscious decision to get to the breakfast room and eat cereal with your new friends, then you were on the road to some form of recovery, even if you were never going to be able to make yourself tea again or get yourself down to breakfast.
But hope was also the heaviest burden and one that many patients couldn’t carry for themselves. My doctor told me that she often made a contract with her patients to carry it for them, to keep it alive. When I wavered, I had Peter and my children, my parents and sister, my in-laws, friends, and colleagues to help me keep going. But it didn’t take away the fact that every day was miserable. I was beginning to lose faith, lose sight of ever returning home again. I hated my room, hated the bare walls, the clinical cabinets, the medical equipment, the many outlets to run the machines, the lift in the ceiling, my metal bed and hospital clothes. I hated everything about being at the hospital, about losing my old life and being unable to see what the future would bring. I tried to hide it, but failed. Peter noticed and started thinking about what he could do to cheer me up.
One day, waking up after an afternoon of strenuous exercise, I sensed something had changed. It always took me a while to get my bearings, to get the strength to open my eyes and persuade myself for another round of whatever was planned for me. At first, I didn’t see it. Somehow the light had changed, or the color of the room, but I couldn’t quite put my finger on it. And then I saw it. Everywhere on the walls and the cabinets were large prints of me and my family, enjoying our adventures around the world.
There we were hiking the mountains, showering in a waterfall, walking along the coast, sitting by a quiet lake enjoying the sunset, exploring a city, going through a Cambridge college, everyone happy and all of us together. I was overwhelmed by the physical presence of our memories of happier times; they flowed through me and gave me an empowering feeling of resourcefulness.
I was back on track, despite the hardship, and ready to push through. I had a visual of my target and decided to take everything to the next level.
Peter was sitting in a chair in my room.
“Hey, honey. I thought you needed something extra,” he said with a quiet smile. “Do you like it?”
I loved it.
“I’ve also bought you some new clothes. Track suits, some cool T-shirts, tha
t sort of thing. I figured that’s what you need right now. Let’s get you out of these hospital rags and into something more suitable, your own stuff. It’s about time you stop being ill and start being yourself.”
I couldn’t agree more. He pulled his chair over to my bed, and we went through every single image, every memory. That night I had the best sleep of the year so far.
Having the pictures around my room and being able to share our memories was very reassuring. It meant my brain was still in some ways intact. It was the thought of being brain-damaged that I found hardest to bear. I could see the signs in people around me—drooling or unable to control themselves, stopped in their tracks. But that wasn’t me. I fashioned myself as a survivor. And yet here I was. You could only be in this unit if you were brain-damaged and being in this unit was my only way to recovery, possibly even my ultimate salvation.
I knew that I had been saved from serious brain damage. Blood clots had formed deep in the very base of my brain—too many for the doctors to count—and in the front right side was a swelling of blood and fluids that had stopped, by a hair’s breadth, exactly at the right time before pushing against the barrier dividing the brain in two. Had it not stopped there, I would have been beyond recovery, a vegetable forever at the mercy of others.
Despite this, there was still not a doctor in sight who could say confidently what the long-term consequences of the clots and the swelling would mean for me. Clinically, I was brain-damaged. In the months to come, I learned that this could mean a whole lot of different things.
Lying awake, listening to the nocturnal sounds of machines and murmurings, I composed my list of physical desires: to feel the ground under my feet, to have the muscles in my legs flex, to feel the weight of the rest of my body, to put one foot in front of the other. I tried to block out the fact that I still couldn’t even place my feet on the floor, that they would not do the things I wanted them to. They just fell down, like two tiny sandbags tumbling out of a wheelbarrow. It was as if they had lost all connection to me.
There I was: a patch over my eye; hair falling out; dry, black, crooked witch fingers; hollow cheeks and a bony body. But Michael had done it. He had found his feet and made that connection between them and walking. In thinking about Michael, in thinking about standing on my feet, swaying, unstable, ready to collapse any moment, I could touch the sense of freedom that he had gained. I stopped seeing myself in a wheelchair. I saw myself walking like Michael.
“This is what I want,” I told myself, over and over. “This is my future.”
But I was still utterly dependent upon others. I could only move very little. Breathing was a constant challenge. I communicated in brief, hoarse gasps with the hole in my throat covered. I could not eat and was still receiving nourishment through my veins. I was wearing hospital clothes, despite Peter’s best efforts. My bed hummed constantly from the generator that blew warm air through the special mattress that prevented bedsores. When my temperature dropped, I was warmed with an electric, air-filled duvet. When my temperature rose, layers were removed and I was cooled by chilled air. My body was unable to maintain a constant temperature, and infections, immediate and aggressive, were an unremitting threat.
Now the focus was on occupational therapy, on finding a way to do everyday tasks, like being able to hold an object, take a bite of a sandwich, lean back in a chair, or use the remote control. I was beginning to think that some fine day, I might be able to do all that. Perhaps I would even be able to put on my own underwear, the new ones that Peter had bought, and be free of the baggy, coarse hospital knickers I’d been wearing for the past two months.
I hadn’t had a thing to eat through my mouth since the first of January. All my nutrition was now fed to me intravenously as I was losing weight, down to just forty-five kilos. The intravenous food made me nauseous, and I was frequently, sporadically sick throughout the day and night. Having lost all use of my muscles, I was unable to swallow. There was simply no connection between them and my brain, as if all the wires had been cut.
To that end, a tiny camera was inserted through my mouth into my throat, and a blue staining liquid was then poured in. I hated it. The nurses could see my distress and they tried to reassure me. “It’s nothing to fear,” said one. “I’ve tried it.” But what did she know? She was healthy. She had control of her bodily functions. She could pretend to try. But she was in no danger of choking. When the liquid hit my throat, I felt as though I was drowning.
What does it take to swallow? More than twenty muscles, even for a tiny bite. Now, in order to eat, I would have to train my throat muscles to work.
It all came as a complete surprise to me. No matter how hard I tried, I could not control anything going on in my throat. The blue liquid flowed down, making me retch and cough. I was choking, my swallowing reflex gone.
I loved sucking on ice cubes. A nice nurse saw that. “You’re thirsty? Right?”
I was, and I longed for a proper drink of water, just the sense of it, the satisfaction of quenching a thirst that had lasted for months.
“Let me get you some water. This will make you feel better.”
It did make me feel better, but at the same time it made me worse. Inadvertently, she poured water straight into my lungs. As I couldn’t control my breathing, I was unable to cough and thus the water stayed in my lungs, gradually filling them up rather than my stomach. I was still so out of touch with my own body, I didn’t register that something wasn’t right. A fever began to build. My malfunctioning immune system could not fight off another infection on its own as bacteria grew exponentially, thriving under perfect conditions. The humid, closed environment that constituted my lungs was a perfect biological breeding ground for pneumonia.
Luckily, I was monitored so carefully that anything even a bit out of the ordinary was clocked. I was quickly put back on antibiotics, but my body suffered from the setback and my training was put on hold. Small steps in the wrong direction could make me go downhill fast. One out of four mechanically ventilated patients get hospital-acquired pneumonia and around 10 percent of them die.
Even off the ventilator, I was at great risk. The blue liquid test was a crude but effective measure of how much of what I was drinking went into my stomach and how much went into my lungs. At first my throat didn’t discriminate, but little by little, with enforced perseverance, I got better at it. Still almost without any muscle control, I was beginning to sense the minute difference when something went down the wrong tube and within a couple of weeks, my reflexes woke up.
I knew I would never get out of there if I could not eat for myself. I had no body fat left. I was a skeleton with some poorly functioning intestines and skin holding it all together. I had to gain weight and come off the intravenous drip. I was constantly fighting nausea caused by the complex pattern of being locked in with physical damage to my brain and months of lacking proper digestion. With a great deal of patience and training, I was beginning to swallow soft or watery substances. “Super” ice creams—the fattiest, most disgusting food ever invented—and cucumber (one of the few things I found would relieve my nausea) were introduced to my diet. I hated the ice cream more than anything I had ever eaten, and the cucumber had no calorific content. It didn’t work. I did not put on any weight at the rehabilitation center.
It was a tough regime. Days were packed with exercises or tests. A typical day would include some activity in the morning, a symbolic “lunch” with a therapist and exercises in the afternoon.
I was utterly exhausted by the late afternoon when the kids and Peter visited. Eating was difficult, both physically and mentally. Chewing and swallowing was still uncomfortable. I didn’t want to eat with the other patients. I had no appetite and my fingers were disgusting. Or rather: I was afraid others would find my fingers disgusting and then not be able to eat. My fellow patients ate in the common room, but I stayed in my room during every meal. In between activities, nurses, doctors and therapists would come into my room several
times a day to talk about progress, plans and targets.
My favorite time with the staff was when they came in with no assigned task, only to hear how I was, or talk about normal, everyday stuff. Not my medication, not my fingers, not my diet. Just asking what I used to do, what I dreamt of doing, and commenting on things happening in the world. All my strength went into physical and occupational therapy. I didn’t have a drop of energy for the outside world, but I liked to hear about it nevertheless, a bit like playing on the kitchen floor when I was a child and my parents listened to the radio.
I had to get used to being at the hospital for long periods on my own. Some days, when the loneliness became too unbearable, I had a nurse call my mum. She was always available and would make the two-hour drive to see me any time of day, stay for a bit, then turn around and go back home, usually before Peter and the children came in the evening. She tried to keep herself together when she saw me. Sometimes she managed better than others. I could see during every single visit how much everything pained her and yet how much better it made her feel that she was doing at least something for me. Still, it did not stop the agonizing internal loneliness I was feeling day in and day out.
Aside from my daily regime of therapy, there were also other specialists who came to see me, checking my fingers, my diet, my well-being. One morning, a wound specialist knocked on my door.
The hole in my throat had closed up, and I had now become better at speaking—though my conversation was hardly flowing.
“Come,” I said, as she entered my room.
The wound specialist had come to take care of my fingers while they were in the process of breaking off, to clean the wounds in order to avoid new infections. But today, spotting my messed-up feet, she exclaimed, “Rikke! What’s going on here? Have you seen your feet! We need to do something about this!”
She was right. My feet were in a terrible state, the skin ruined by medication and lack of movement. I was used to decisions about my care being made by others, but this time, I silently agreed.
The Blink of an Eye Page 10
