My personal trainers worked me hard, hoisting me with all their strength into an upright sitting position, never letting me go, stopping me from falling flat on my face, getting me on the tilt table and strapping my feet to the bed-cycle. I needed all the oxygen I could get and had to be kept on the ventilator during my exercises. The trach couldn’t be attached to the ventilator and the speaking cap at the same time, so exercises kept me mute and focused; I was still nowhere near doing anything on my own, my body merely going along with what it was being forced to do. But it helped. Little by little I was feeling a connection to my limbs. It was wonderfully liberating.
Five days later, having progressed to a sixty-degree tilt, I was ready for the next big step, something that until recently had seemed forever out of my reach: a wheelchair, and my vehicle to getting around by myself. I had grown used to observing life from my bed. As I became more conscious, coming gradually to understand what had happened to me and the most likely outcome of my condition, I was grateful for just being alive. I comforted myself with the thought that I would see my children grow up and grow old with Peter. Any goal beyond this was not yet realistic; the idea of being able to move around in a wheelchair on my own, for example, not yet within my grasp.
The kids were there, all excited, following the details, chatting, pointing, helping, and managing to be out of the way as the preparations took place. I couldn’t simply hop over from my bed. Lying flat on my back, I listened to the therapists taking me through the steps, and then looked at the world as I was floated through the air, until finally I was placed in a specially-designed chair. It was like gearing up for deep-sea exploration. Heavily loaded with portable equipment—I still couldn’t go anywhere without oxygen and monitors—Johan wheeled me through the door and into the hall. It was a victorious moment for all of us, and a revelation to me—like travelling back in time, seeing the things and places that had made up the daily life of my family while I was out.
My children took me to the family room and I began to see what their life must have been like over these past weeks, all the anxious waiting, sitting there not knowing what they were waiting for. I saw the chairs, the couch, this small, claustrophobic room with nothing but a kettle and some teabags. I looked at the other visitors, friends and relatives in the waiting room, who may not have known what was going to happen to their loved ones. For the first time, I was able to see myself from their perspective, all the horror of standing by. I stared at the chairs where they had cuddled up, crying, fearing the worst and hoping for the best. I felt their pain.
And I realized in my heart again this was not just about me. My children needed me. I had to go even further than the wheelchair and get back on my feet.
It was another two weeks before my physiotherapist pushed the tilt table to one side. “Rikke, you are ready,” she told me. “You are going to stand on your own.”
She was right. I felt ready and I was ready. On the count of three, my physio on one side and Peter on the other, they lifted me and I felt my own weight on my feet, in my legs and through my body. Then I did it again.
I was standing, but it felt like flying.
It was a time of renewal. A month in, I had my first shower. First, I had to be lifted onto a special shower bed with a waterproof mattress and a hose. I couldn’t raise my head to see what was going on, which I found upsetting. Next, a nurse undressed me. Being naked increased my sense of vulnerability and I was cold and afraid. But then the water hit me and it was the most wonderful feeling.
After that the shivering overtook me and I sank back into a comfortable, clean and dreamless sleep.
A new decision was made: I needed a change of scene. I was being transferred to Infectious Diseases, another highly specialized department at the university hospital. I was not happy about that. Everything I had grown used to was about to disappear and I was terrified all over again. Intensive Care had become my unnatural home. I felt safe here and now I was anxious that I would no longer have a dedicated nurse watching over me every hour of every day and night. At Infectious Diseases, I was told, I would still have my own room but nurses had more than one patient. Was I going to be safe? What if anything happened and I needed their assistance?
Peter helped the nurses to understand my worries about not being able to call for help, so inventive solutions were tested. A button didn’t work, as I’d have to be able to move my hand. A string connecting my arm to an alarm was better, but highly inefficient. It went off when it shouldn’t, and I couldn’t make it work when I had to. New solutions were needed, and I was still afraid. Awake, it took only a few minutes for the loneliness to creep in. I felt abandoned if I did not see or hear another person near me. The worst was to listen to somebody walking around or doing things in what sounded like somewhere next door.
What if something happened to me? What if my saturation dropped and I needed oxygen? What if my fingers got caught in something and I started to bleed? What if my heart suddenly stopped? Would they notice? Would they have time enough to react? How could I make myself known, if I needed assistance? I was miserable at the thought. The only consolation was that I was asleep most of the time. But then I woke up and it started all over again.
Contrary to my anxieties, things were going well—surprisingly well, actually. The chief physician in Infectious Diseases, who had been assigned to me on day one, as one specialist among many others, was now formally taking charge of my recovery with my transfer from one hospital department to another. I was no longer an intensive care patient, but in her care.
“Change is coming,” she informed me kindly but firmly. “You need to get used to it.”
Change? What did she mean? I did not want change. I wanted stability. Change was uncertainty, it was taking risks I wasn’t prepared to take. But I had no say. All the major decisions in my life were taken by others and I had to tag along. I hated it and yet there was nothing I could do.
“I’m scared,” I told her.
“I know. But you don’t have to worry. We’ll take care of you,” she replied. “I’ll take care of you. And we will watch you all the time. Not as closely as now. But you have nothing to fear. You’ll be all right.”
I didn’t believe her, but it made little difference. I was moving on in my life, whether I liked it or not.
I left Intensive Care on Valentine’s Day. It had served as my home for more than six weeks. Following tremendous progress over the preceding days, I had passed the last critical step to discharge. There was no trace of the bacteria in my body anymore, and the many complications arising from my infection were now under control. In other words, it was safe to move me and there was someone worse off than me who needed my room in Intensive Care.
It was always a complicated affair when I was taken anywhere inside the hospital. So far it had been only for tests and scans. Now I was really on the move, hopefully never to return—in this condition at least. All the devices and machines providing me with medicine, hydrating and feeding me had to be moved to mobile units. It took a while to prepare everything and I waited impatiently. Finally, I was released. In a state of disbelief and exaltation I was rolled out and into the unknown by a porter, a nurse, and Peter, familiar faces of nurses and doctors smiling and waving goodbye to me as I passed them.
In a film it would have been one of those sustained dramatic moments, savoring the atmosphere, a tearful send-off with people saying exactly the right thing and me replying with fluent gratitude, or at least waving silently. Real life was different. I was a patient who was leaving, alive, not dead. They had done everything they could to get me to this moment, and now it was time to begin again and do it for the next patient who needed them. There was no time for sentiment between emergencies.
As for me, I would be only five minutes away, but it felt like moving to another country on the other side of the world.
Everything went according to plan. My new room in Infectious Diseases was kept the same as it had been in Intensive Care. Ev
erything that had been done in my old room could be done in the new one. All the equipment I was dependent on was hooked up here; the ventilator next to my bed, the monitors measuring my heart and saturation, my feeding tube. A nurse was constantly on call, looking after me through a large window. Infectious Diseases was where patients with unidentified tropical diseases, or those attacked by drug-resistant organisms, were housed, so they were well used to dealing with very serious problems.
There was one significant change, though. Visiting restrictions changed and my mum, sister, and other family members were allowed to come more often. It was a huge relief to everyone.
“Are you comfortable?” This was always their first question, just after a quick hello. Sometimes it was my mum asking, sometimes my sister. They would adjust my pillow, my duvet, my arms or legs, anything that would add sense to their being there, providing me with comfort I wasn’t getting from the nurses or therapists. Even if I was perfectly OK, I let them do it. I loved the attention, I loved them being around me. The painful loneliness that I had been suffering, locked inside myself while becoming ever more conscious and awake, started to feel a tiny bit better.
On Valentine’s evening, Peter and I got a little time to ourselves, although there was very little romance about dialysis and being fed through a tube. But we were together. To me, to him, this was better than any candle-lit dinner in a fancy restaurant. We celebrated the evening, curiously happy and optimistic, among wires and monitors, the backdrop of mechanical beeps our romantic soundtrack.
After just six days at Infectious Diseases, my doctor was talking about my next move to a rehabilitation center. It felt like all too short a transition, but medically speaking, I was cured, she told me. During the past five days, I had managed to go from twelve hours off the ventilator to more than twenty hours. My wounds around my mouth were almost gone, and I was talking more and more. Sometimes I even had the strength to produce sentences with three or four words. You could hardly call it speaking, but I embraced any addition to my limited means of communication. Now, the focus of my treatment would be on physical rehabilitation—getting me to eat, to move, even to walk. Walk? I could hardly contemplate the idea. The possibility of a wheelchair had begun to sink in and felt ambitious enough. But now others had started to have higher ambitions for me.
There was still so much to do for me to be ready to move on. The breathing tube was still in my throat, as was a feeding tube that reached into my stomach. While there was still a long way to go before I’d be able to chew and swallow, there was no doubt, according to my doctor, that the air valve could go. I was not too happy about this, as it had been my safety net for so long now. When I struggled and felt under pressure, I was always allowed more oxygen. I had come to enjoy the luxury of having air pumped into my lungs when I needed it. Also, what about the hole it would leave in my throat?
“Don’t worry!” said my nurse, cheerfully. “We’ll tape it up!” Considering how integral to my body the valve had become, it was curious to see how easy it was to remove. It took a surgeon only a few minutes before he was standing waving it in one hand complete with trails of not-quite-healed tissue, blood and yellow pus from what he said was a typical but benign infection in the area where the plastic met the skin and flesh of my throat. He had left an open hole. Taking hold of it for a few seconds, he turned on the suction device, stuck a thin plastic tube down it, a very long way, and sucked my lungs clean from blood and slime.
There was a lot. It hurt like crazy and I couldn’t breathe for the full minute he took to finish. To him it was routine, like vacuuming the car before handing the keys back to the owner. I wanted to kick him and stick the tube down his throat, so he could feel the pain and misery himself, but then he was off. Besides, I could barely move my leg, so kicking was out of the question.
The nurse cut the tape and closed up the hole.
I could feel the tape blow up like a small balloon when I blew air through my mouth. The patch was changed regularly and as there was no sign of infection, I was assured that eventually the hole would close.
Now more than anything, I wanted to be with my children, to talk to them, answer them, play with them, walk with them, eat with them, read to them.
To be their mother again. My dreams soared.
eight
Walking
In Intensive Care and Infectious Diseases, they had tended me, cared for me, brought me back to life—and now that I was no longer in danger, their job was done. It was time for me to move on to the next stage of my recovery. After forty-nine days at the university hospital, I was transferred to one of the best rehabilitation centers in the country.
My emotions were mixed. I knew this meant I was going in the right direction, but it also felt as if I were being cast out to fend for myself, a bit like leaving home to go to college. I knew there would be people to help me, but I also knew that I would have to be more independent.
I was given a room in the Early Neuro-Rehabilitation Clinic—a section for patients with very little cognitive ability and movement. My room was small and white, unwelcoming and horribly unfamiliar. Everything felt wrong about it. Peter tried to cheer me up and arranged my photos so that I could see them from my bed. But it didn’t help that much. And it turned out I was still utterly dependent on others, except in a strange, new environment with new people and strict new rules and routines. It was so difficult adjusting and I woke each morning with a growing sense of dread.
Ever since being admitted to hospital, my kidneys had not been working properly. When the first drops of urine had appeared in my catheter bag, this had been a major turning point and a reason for optimism, as it meant my kidneys had started working again. Not very well, though, and my doctors in Intensive Care thought it might never come to more than this. But ever so little was better than nothing and even if I were to be on lifelong dialysis, it would be assisted by my own body, and as such was a sign that I had begun to contribute to keeping myself alive. This had been an important step forward, the foundation of self-respect. I was proud, simply because this was something I could do on my own.
At the rehabilitation center I was still stuck with my catheter bag, transparent and yellow. It had faded a little as a symbol of triumphant survival and was beginning to become a bit of a problem, a reminder of what I couldn’t do and of my utter dependence upon others.
One morning, as I lay in my bed, two nurses were talking across me.
“Where should I put the jar?” said one of the nurses.
“Just put it by the door,” replied the other.
They were deciding where to put the urine they had emptied from my bag. My eyes followed their movements. Still unable to talk very much or move more than a fraction, I lay there following a conversation as if I were not present.
“Be careful not to spill it,” the second nurse continued. “Do you remember when I accidentally kicked a jar and that urine went all over the place?” the other nurse replied, laughing.
“Oh yeah, I do! The tube went whirling around the room and we were all soaked in urine. Don’t do that again!”
“It was pretty disgusting,” said the first nurse, a mixture of amusement and disdain in her voice. They started laughing as they turned away from me. I felt so vulnerable and humiliated, unable to maintain even the minimum of dignity. Peter wasn’t present, so I had nobody to fight for me. I began to cry.
But my crying was silent. The sound of crying, a high-pitched wail or a low hollow moan, is a statement. It says: I am here, this is my pain, this is my grief. In my solitary prison, I could not even do that to make people feel or see my pain. Despite all my progress, I couldn’t make people see how much I needed to be recognized and respected as a person, not another faceless, brain-damaged patient. I had a face, and it was streaked with dried-up silent tears.
Peter had been by my side every day since the New Year. Now it was March. He had to go back to work at the university.
Working in one city, visiti
ng me in a different city and taking care of the children in yet another city was a logistical challenge. Now, he came to see me on his way to or from work, but only for an hour or two before he had to leave to make it in time for a meeting or pick up Daniel. The first of those endless days, when he wasn’t there every hour, I cried.
“It’s a sure sign of depression,” said my new doctor. “No doubt about it. It’s perfectly normal, given your circumstances. I see this all the time.” She straightened her back. Job done. She was already walking away, on to the next patient, leaving me in my white room, engulfed by loneliness. I was sad. But I was not depressed.
My left eye had been watering for a few days, and like a tiny biological tap, it just wouldn’t stop. I could not lift my arm to dry or wipe it. I simply had to put up with it. But I knew that her diagnosis of depression was wrong and through the intricate means of communication Peter and I had developed—subtle signs in how I looked at him, blinking, lip-reading, using the spelling board that was driving both of us crazy and throwing in a few words every once in a while—I told him to tell the doctor that I was not depressed. In fact, I was over the moon with all the progress I was making, ready to make more. There was simply something wrong with my eye.
But she didn’t listen to Peter. She relied on the information she gained from reading the charts and whatever she could glean from the patients themselves. As this was almost always very little—there are limits to what immobile, brain-damaged patients can communicate effectively, let alone expansively—she was used to relying on her own experience and expertise. She ignored Peter as he conveyed key information about how I had been treated at the university hospital, despite the fact he had spent two months meticulously going through all my reports, analyzing the test results and tracking down the latest research. I had asked him to be my voice and now I felt my doctor wasn’t listening to me. Peter was there to help and to act on my behalf, but in her domain, there could be only one person in charge. This was not his business.
The Blink of an Eye Page 9