I was also having trouble with my left foot. It bent inward and got in the way, making me stumble, causing me problems as I made progress walking. A cast was fitted to keep the entire lower part of my leg in place, and I had to wear it as much as possible—even sleep with it. I had to endure the uncomfortable itching, the numbness it triggered and the distress of not being able to put it on myself. I joked about how pirate-like I was. I had the eye patch, the severed hand in need of a hook and the “wooden leg.” I only needed a parrot on my shoulder to complete the picture. If I was ever going to walk properly, I had to give the cast a chance.
Around the same time, a clear fluid had started to run from my nose. It was incredibly annoying and came at all hours of the day and night. I didn’t have a cold, so the fluid needed to be tested. It was a painstaking job and not a very nice one for the staff. All the fluid from my nose had to be collected. Every time I had an itch or felt something watery in or below my nose, I had to call a nurse. They would come running with a vial to collect the fluid. If I had to blow my nose, all content would have to be collected too—all the content.
Collecting my nasal secretions was quite a show, embarrassing and exhausting. The first batch turned to gel while being transported to the lab and couldn’t be used, so it had to be done all over again. The doctors had a suspicion that the fluid might be coming from my brain or spine, which would be critical. The brain is a delicate organ, packed in a hard shell of bone and floating in a liquid to protect it from bumps and injuries to the head. If the brain leaked, it would lose one of the two main protective agents. To everyone’s great relief, the tests revealed that it was neither brain nor spinal fluid. In order to figure out what it was, and where it was coming from, it was necessary to have my entire skull scanned.
The images revealed a cavity in my sinuses that was a potential risk for bacterial growth, hidden like a microbiological terror cell. Surgery was needed in order to prevent the constant and detrimental risk of further infection.
Once again, I was scared. Not only would this mean a general anesthetic, going completely under, but this was the first time I was to have surgery inside my head. Just as I was regaining control of my mind and body, I would have to let go once again and leave both in the hands of others. I was terrified of the darkness and depth of a coma, and I felt helpless and marooned all over again.
Despite the fact I had recovered from surgery before, I was unable to get over the possibility that this time I would not wake up, that in saying goodbye to Peter and the children, I would be doing so for the last time. But there was nothing I could do. I had made a lot of progress, enough to realize what a fragile state I was still in and that things could go downhill fast. This was a necessary procedure for me to get well. It was not about my recovery anymore; it was about my future life and trying to prevent everything from happening again.
I kept my worries to myself and braved a smile. “No problem! I’m ready! Let’s do this!”
As it happened, this was only a minor surgical procedure, a standard operation that could be done at any hospital. The staff acted accordingly. In my mind, however, it was always about life and death. I recovered quickly, feeling no different after the operation, and within a few days my runny nose stopped. As it had already been established that I had neither a leaking brain nor spinal fluid seeping through to unwanted spaces, the doctors relaxed and the focus was once again on getting me on my feet and working on the biggest remaining issue: weaning me off my white bag of liquid protein that I still took through my veins.
I was still nauseous all the time, constantly fighting a strong feeling of vomiting, day and night. It prevented me from sleeping well. The nurses tried everything to make it go away, all sorts of medication, but nothing worked. Finally, they were left with nothing but the hypothesis that it was my body rejecting the intravenous food, so I was promptly taken off it and left on my own to gain weight.
And so there was no way around it anymore. I could not get away with chewing a few grams of cucumber or sucking on half a teaspoon of ultra-fatty ice cream. I had to start eating properly— the last real breakthrough I needed to be on my way home. I was still eating alone, but I began to eat a little more and then a little more, and finally I was able to manage without my white bag. As a result, I lost even more weight, but I was eating just enough to satisfy my doctor that I was on the right track. After a couple of weeks, my nausea began to subside.
I was feeling better. Every week I was breaking records, now being able to walk down the hall—not on my own yet, but I was putting one foot in front of the other. Most of the time was still spent in bed. I continued to sleep a lot, but I now enjoyed sitting in the armchair in my room. I could see the window from there. Spring was coming. I wanted to go out, but although my range had increased, I was not yet able to leave on my own. My family took me around the hospital in my wheelchair when they visited. We had settled into a new routine.
Peter was again busy at work and keeping everything afloat at home with the kids. He still visited me every day, the kids took turns most weekdays after school, and on weekends they all came. I knew how important it was they returned to a kind of normal life, spent time with their friends and did all the usual things for their ages. They were playing, reading; they watched films and played video games. I wanted to join them and continued to push myself in the gym, taking every new challenge that was thrown at me. I was beginning to get used to my new hands. They took a long time to heal and they were completely different from what I knew. But they were not bad. Not at all bad.
At the rehabilitation center I started getting more visitors. Friends and colleagues stopped by for a quick hello. With a few exceptions they were all shocked to see me, a fraction of a second’s hesitation as they entered and first laid eyes on me. They tried to hide it, didn’t mention anything, but I noticed everything, every time. At least the children quickly got used to it and acted perfectly normally around me. My mum cried each time she saw my hands. Trying not to make her feel worse, I felt I couldn’t really tell her that she had to get over it. I had to get over it myself. I had to get over everything. I had no choice. I was stuck with my new hands and everything that went along with them.
I was going home more frequently and each time was a small victory. But there is something inherently wrong about visiting your own home. You should never have to do that: You should simply go home. And I had been away for so long that even as I went back more often, I couldn’t help feeling removed from things. Shattered as they were, my family had managed to carry on with their lives and there was so much I had not been a part of. Daniel had been a troll in his drama class production; Johan and Peter had bought new bikes; they had been to the movies, gone to concerts, been at parties. I had missed out on it all, and so, I resolved, it was about time that I took part again, full time.
It was a daunting prospect. I had been totally dependent on others to look after me, to decide what I needed and provide it. The thought of going back home in such an altered state, making decisions again and determining my own day, as far as I could—to participate in normal everyday life, even with help—was both scary and exhilarating.
Quite apart from the emotional adjustments we would all have to make, there were practical considerations. Would I need someone at home caring for me while everyone was out at work or school? Would I need help getting dressed or using the toilet? If I was alone in the day, who would help me to take my medication? I took twenty-nine pills every day, ten in the morning, six at lunch, six at dinner, and seven at night. In my current state, that was a meal in itself. If I wanted to go home, I had to do this on my own. There would be no doctors and no nurses next door to tell me what to do and when to do it. I had to step up and take responsibility. There would be no safety net.
One morning, I walked Daniel in to school. I was due to go back to the rehabilitation center, having spent the night at home. Daniel helped me from the car, guided me through the doors and held my hand as I cl
imbed the stairs.
When we got to his classroom, he asked me to come in and as he was taking off his coat, his teacher came over.
“Rikke,” she said. “Is there any chance that you could stay around this morning and answer a few questions that the children have about what has happened to you? Daniel has been so good at explaining things to his classmates, so eloquent and patient and as a result they have so many questions.”
Daniel beamed. He touched my hand gently.
And before I knew it and without any preparation, I was standing in front of twenty-five children trying my best to answer all the difficult questions, all the ones adults are far too polite to ask. Eight-year-olds are brutally honest. They say what they think and before long they were firing questions at me, as if we were in a verbal shooting range.
“Is it true you slept for two weeks?”
“Why do you look so old?” (Did I?)
“How did you learn how to walk?”
“If you were dead, are you a zombie now?”
“Your hair looks funny and you are very thin.”
“Are bacteria really that dangerous?”
“Why do you stay at the hospital?”
“Don’t you want to go home?”
“Will your fingers ever grow back?’
And as I looked around at their attentive, interested faces, I realized that I could answer as freely as I wanted. It was such a relief to be able to talk openly about all these things.
“No,” I said, smiling at them, “my fingers will never grow back. They were cut off, because my blood had stopped flowing in them and then they died. Just like when you pick a flower from the garden. It will survive for a bit, but it won’t get all the water and stuff it needs, so it will wither. It was a bit like that. Except my fingers withered before they were cut off.
“I look old because I have been very, very ill.
“I was in a coma for two weeks. It is very much like sleeping, but it just goes on and on and it doesn’t even make a difference if you set the alarm. It takes a very long time to wake up. Some people in a coma never wake up. I did.”
I explained, “When you lie in bed for so long, all your muscles get weak and can’t support your own body anymore and then you have to spend a lot of time training to do all the things none of us think about, but just do. Like walking. Jumping. And sitting down in a chair in front of the computer without anyone helping.
“And yes, it is true, my heart stopped. But sometimes when that happens and you have the right equipment, you can get the heart started again. I was lucky. Someone was there, and they knew what to do. I am just as much alive now as all of you.”
Daniel, who had been standing by my side, squeezed my arm. The teacher thanked me, but the children were fascinated, unable to let me go without asking another battery of questions.
“Because of all the medicine I had to take,” I continued, “I lost almost all of my hair. It just fell out when the nurses combed it. I still can eat only teeny tiny bits of food. I get most of my food from a bag of white liquid. I have a small valve attached to my arm and it comes straight into my veins. That’s why I look so funny with strange hair and a bony body. It was bacteria that did all of this to me. Some bacteria are good. They help you digest all the food you eat. And some are bad. Like this one. It can give you a cold or a fever. Or, if you are really unlucky, it can make you very, very sick.
“I’m still too weak to manage for too long outside the hospital, but I can visit you and I can visit my family in our home. I work hard every day at the hospital on my physical training and I am getting stronger and stronger. I want nothing more than to go home—for good.”
Daniel was listening intently. When one girl asked how the bacteria looked, Daniel jumped in, “It’s so small, you can only see it with a microscope!” He was on top of it. He didn’t miss a beat, and not for a single moment had he hesitated or flinched, not even when the really tough questions were asked. My little man, doing so well in front of his classmates.
“Thank you so much for sharing your story with the children,” the teacher said. I walked out with a feeling almost of elation. I had stood there, Daniel at my side, and talked about everything. No longer afraid of who I was or who I had become. I sensed happiness at last.
I needed to prove to myself that I would have a fighting chance of at least some degree of independence. And so, back at the rehabilitation center, I hatched an ambitious plan. I kept it a secret from my family and worked it all out in my mind before involving anyone else. I was quite good at being with my own thoughts by then. I thought out every last detail, the mental gymnastics tiring and complex, for my brain was still not firing on all cylinders. First, my plan involved getting some money. This was tricky and it took a few goes before I felt I could ask Peter about it without arousing any suspicion.
There were various things I could pay for at the hospital. By having some money and not having to ask Peter for it each time, I could make an argument about keeping my dignity, and he would see this as a step toward my independence and full recovery. Then I had to calculate the absolute shortest distance to the place I needed to go, and then work out if I could make it. Walking was the only option I was allowing myself. Being taken there in the disability van was not part of my equation, with all the lack of independence it implied.
I also needed the right equipment to execute my plan, but as all I required was pretty basic, I didn’t think this would be a problem. It was only when I had figured it all out that I allowed myself to think about an accomplice, someone who could keep quiet, help me through all the stages and, most importantly, not dismiss my idea out of hand.
I knew exactly who: my occupational therapist. She would understand and approve of this challenge. But I would need to think deviously. If I could somehow get her to think up the idea, work through the details and worry about whether it was really possible, and then let her slowly convince me until I gave in, that might succeed. It was a cunning ruse. But in the end, I didn’t need any of my guile. I could sense an open goal. So I told her everything from the beginning of my plan to the end. She thought it a brilliant idea and all my therapists soon went along with it. They saw it as a great sign of mental and physical recovery. I saw it as a victory.
I was entering the real world again. I was going shopping.
The shop was only a quarter of a mile away, but it may as well have been in Timbuktu. I had to get dressed to go outside, put on shoes and walk along the pavement. This was a different world from anything I had experienced the entire year. My physio had brought a tiny backpack for me to carry my groceries in. There were other people on the street; cars and bicycles sped along so fast, and it all felt loud and overwhelming.
Walking to the store was the hardest thing I had done in months. But with my physio by my side, I slowly and carefully kept putting one foot in front of the other. It took more than half an hour to get there. The responsibility of the project was mine. It was up to me and no one else. I was so enjoying myself. I had to walk in and find the things I needed, put them in the basket and walk to the register. It needed my full concentration. Despite the change of scene, I hardly noticed my new surroundings. I just kept my focus on not falling and on getting the goods.
“You did it! That’s incredible,” my physio said.
But I still had to get back to the hospital, and then the real work would begin. Time was of the essence.
In the late afternoon, Peter and the children came to see me. I suggested we have tea in the kitchen. Some of the other patients were sitting at the other end of the table. They had waited patiently for this moment.
“Could you get something from the fridge for me?” I asked Peter.
The other patients had heard about my voyage to the supermarket and had been monitoring the entire operation from the sidelines. Now they followed Peter’s every move as he opened the fridge door.
“That,” I said, pointing to the big round cake in the middle of the bottom
shelf. “I made it for you.”
I beamed. Peter took a couple of steps back.
“You made it? For me? But how?” Euphoric with pride and happy beyond measure, I took Peter’s reaction in as he tried to make sense of it all.
“Look what your wife has made for you. You must be so happy,” said one of the patients.
It was Peter’s birthday, and I had decided he should have a cake. One made by me.
“Mum, you made a cake. You’re amazing!” Johan and Victoria were as proud as their dad and couldn’t stop smiling, while Daniel was jumping up and down with excitement. It was a victorious moment—not only for me but for all of us. We had been through so much pain and grief together; now it was time to share some happiness. Peter cut the cake.
The piece of cake on my plate remained untouched. I smiled. My eyes were closed. I wanted to taste it, but I could not even open my mouth, let alone lift a fork that far. There was nothing left in me. I had to lie down. Sleep was coming up on me fast, a matter of minutes now.
The children were chatting away; Peter was talking to Victoria. “Will you excuse me?” I said. They barely noticed. And as I started to move, I was overcome by a sense of wonder. I had set myself a goal, thought up a workable plan, got dressed, put on shoes, walked to the supermarket, bought ingredients, and made a cake from scratch. Every step had been intricate and tough going, totally disproportionate to the end result, but what I loved was seeing my family eat the cake, chatting to whoever they were sitting next to, barely noticing that I was nodding off; it all felt normal, as if it was merely something I could do, like I used to. I loved it for its ordinariness, for not being anything special. An everyday thing.
The Blink of an Eye Page 13