She went out of the room, returning a few moments later with two plastic bags and a large bottle of sparkling water.
She poured the water into the plastic bags and placed one foot in each, tightening them with rubber bands around my ankles. After thirty minutes of soaking, she gently peeled the leathery skin off my feet like ripe fruit. I was horrified and delighted at the same time. When she’d finished, they felt soft, like baby feet.
As I got stronger and more independent at the rehab center, my world started to expand. I was spending more and more time in my wheelchair and no longer had to be lifted into it. My hard, physical work was paying off and ultimately I was strong enough, with some help, to slide myself from the bed into my chair and I was getting pretty good at it. Still attached to tubes and wires, I was beginning to enjoy a higher degree of freedom.
Daniel loved pushing me around in the wheelchair and, when I wasn’t in it, he would commandeer it himself, scooting around my room, turning tricks on its wheels. If he felt adventurous, he would speed down the halls, skillfully avoiding any oncoming nurses and patients. I loved seeing how fearless he was, and wished I could act like that again someday. The very thought of driving through the open door, out into the daylight, feeling the wind against my face, accelerating down the wheelchair ramp and coming to a standstill at the roadside made my heart beat a little faster. I would be in perfect control of my driving machine. When Victoria and Daniel came after school, they would often wheel me down to the games room, and I sat and watched while they played board games and table tennis, catching up on everyday things with Peter. This was the normality I had craved for months.
My therapists were taking me farther and farther from the safe confines of my bed. Eventually, we made it down to the gym. This was no ordinary gym, with quiet areas for occupational therapy, lots of highly specialized equipment for severely disabled people and a small pool. At the very back there was a tiny room with weights, the only thing familiar to me. That room was like looking at the moon. I could see it, but going there seemed impossible. Peter was by my side as we were introduced to the equipment, and the physios outlined the training program that I could now embark on. As one of them wheeled me around, she stopped at a set of railings, a few feet apart with a short track between them.
“One day, Rikke, you will walk along here,” she said. They had already learned—the doctors, nurses and therapists—that I thrived on challenges. When they presented me with options that would push my limits, I wanted to have a go. If anyone suggested there was something I couldn’t do, I wanted to prove them wrong. I looked at the track, about five meters long. She knew I would not let this one pass. She was cleverly baiting me.
If I didn’t take her concealed invitation to give it a try, no harm was done. On the other hand, if I went for it and didn’t fall flat on my face, this might very well be the next step in my recovery. Of course, I couldn’t resist the challenge. I looked at the track and the bars as the habitual feeling rose inside me. I didn’t want to wait. I was ready.
“How about now?” I asked.
“Sure,” she said, glancing at Peter. He smiled and nodded silently.
She wheeled me to one end of the bar and asked Peter to stand at the other end.
“OK,” she said. “I’m going to remove the chair, but don’t worry, I’ll be holding you. You won’t fall.”
She lifted me up and held me as I dragged my feet, putting one foot in front of the other. I walked all the way toward Peter. In this moment of victory, I would like to have smiled, waved or at least said something, but I was focused on having another go. My legs were already cramping and my arms were shaking, but I wanted this, I needed this. Peter and my therapist helped me turn around and once again I saw nothing but the track in front of me.
I walked the stretch of the bar twice that day. I was ecstatic and so exhausted that I knew I would sleep the moment my head hit the pillow. I had done it. I had walked.
It was a momentous achievement for me. To Peter it was also extremely special. He had watched all our children take their first steps and now he had also watched me relearn how to walk. There was still a long way to go, but I was getting there.
This was on the sixteenth of March. Exactly two and a half months since I had last taken a step.
One of the nurses mentioned that a hairdresser who came regularly to the center could see me. It sounded like a good idea. I quickly realized that it wasn’t.
As she wheeled in her cart, she shot one quick glance at me while reaching for her tools.
“No one will notice the bald spots when I’m done,” she said. “We should take away what is left of all your long stuff and cut it short. Short hair will suit your face You’ll look much younger.”
Was she crazy? Anybody who took one look at me would think I was eighty years old, even though I had not yet turned forty.
My hair was falling out, I was wearing a black eye patch, my fingers were drying up, I was bone-thin, and I couldn’t smile, not even a little. I had no control over my facial muscles, and I looked old and angry, miserable and resentful, with my lips turning downward in what looked like a hideous dismissal of everything around me. This was not me. This was not how I felt. I looked at myself in the mirror. I was ugly. How could the world see me as anything else?
She did her best, but it made little difference. There was no magic makeover.
I had heard some of the other patients talking about home visits. From where I was lying, home might as well have been on another planet, though I did allow myself to imagine opening the front door to our house and walking through to the kitchen, the heart of the house, with its huge table where we ate and talked our way through meals; sitting in the study, where the children did their homework and we talked about the books we read; and finally, going into our bedroom and getting into bed with my own warm, fluffy duvet covering me. I longed for it.
So, when the doctor suggested it one day, I couldn’t believe that elements of this fantasy might come true.
“Yes!” I beamed. “I want to go home.”
“You’re ready for a short visit,” she said. “A nurse and a physiotherapist will go with you, but it can only be for a couple of hours.”
She could have said anything beyond “you’re ready.” All I wanted to know was when.
Three days later, I was strapped into my wheelchair, having been pushed into the specially adapted van that was bringing me from the rehabilitation center to home, excited beyond belief. As we drove, I looked out of the window, wanting to take in every little change of environment: the snow on the pavements, the icy trees on the roadside, the gathering storm. People were walking along the street shopping, talking, normal everyday things now so very unreal to me. The light was too painful, and I got only a glimpse of the real world. I was so easily exhausted. I closed my eyes and fell asleep, well protected, feeling safe. I had never visited my own home before. It was a strange, almost exotic feeling, bathing me in a lightheaded happiness.
Turning onto our road, a quarter of a mile from our house, the van got stuck in the snow. We were trapped. If the van couldn’t drive on, there was no chance of me getting into my house. The snow was too deep for my wheelchair and it was far too dangerous to leave me out in a freezing temperature for more than a few minutes, even with all my blankets and warmest clothes. I was just sitting there, strapped down and locked inside the van, unable to do anything, so close to home. After all this effort I was not going to make it.
But there was no need to worry. Peter and Johan came running toward us and with the help of a passing neighbor, the nurse and the physiotherapist, they dug the snow from around the wheels and pushed the van free. Eventually we were able to continue the final stage of our journey. There was no way we could make it all the way onto our drive, but Peter and Johan had dug a path in the snow for me. My nurse tightened the blanket around me and Peter pushed me in my wheelchair out of the van.
How I’d longed for this moment. How many t
imes I had imagined my home, room by room, the light, the warmth, the memories, the familiar scent of our house. All that is home. Peter and the children had made the house comfortable for me: a portable ramp got me through the door and things had been moved out of the way for ease of access. I would like to be able to say that Peter lifted me from the wheelchair into our winged armchair—my special comfy chair—and that I sat there for a couple of hours basking in the warmth of my home, the children close around me, talking, laughing, cuddling me, while I retook possession of our house. But I was nowhere near doing that.
The fact is that I was utterly overwhelmed and exhausted from travelling. All I wanted to do was to lie in my bed and feel the comfort of our mattress under my bony body, hear the rustle of the duvet cover and breathe in Peter’s smell. And so it was that I pretty much slept through my first visit home. I had to be woken up. We had to get back before the storm picked up and darkness fell. There was no room for risk.
The next time home was easier. The snow had gone and I got to stay a bit longer. Two weeks later, Peter was even allowed to take me home on his own. He had made a beautiful selection of my favorite foods: small portions of homemade hummus, lentil paste, bread right out of the oven, avocado, fresh mango, grapes and strawberries, cranberries and nuts. It looked delicious, but I had no appetite. I was still fighting constant nausea and only managed to eat half a strawberry.
It didn’t matter. I was home. This time, with the children at school, I was alone with my love, just like in the old days. We had the house to ourselves. I was all bubbly inside. Feeling adventurous, even slightly reckless, I immediately fell asleep in a soft cloud of sheets.
Now I could walk a bit and I was sitting up out of my wheelchair for longer and longer. My rehab room was fitted with a winged armchair, balancing independence and support. But I was still unable to pass urine myself. It was time to get my bladder working again. My catheter was taken out and an elaborate process began. Every third or fourth hour, nurses came in to empty my bladder. A bedpan was put under my buttocks and I was told to pee. In the beginning I couldn’t really feel anything. After what seemed like an eternity, a handheld scanner was used to determine if there was any residual urine. Remaining urine could cause additional infections and, in the end, kidney failure. If the scanner detected any remaining urine, a catheter was put in to empty the bladder completely.
Every time I hoped it would be the last. It never was, and for more than two weeks I had to endure the bedpan-scanner-catheter regime until, finally, one day I had emptied my bladder by myself three times in a row. I was full of joy, especially as it had an added value. I could now wear my own underwear. Having my own panties on made me feel ecstatic. They were so tiny compared to the hospital knickers, so delicate, so perfect.
Spring was on its way, flowers in bloom. Victoria’s birthday was coming up. We were used to being together on birthday mornings, and it meant a huge amount to all of us. I told my doctor about Victoria’s birthday and she asked me if I wanted to spend the night at home. I had less need for the feeding tube, which had opened up a host of new possibilities in terms of training, eating, and, now sensationally, a sleepover at home.
On the day before Victoria’s birthday, Peter took me home. He had prepared a meal for me and tried to hide how nervous he was. I still had no appetite, feeling constantly nauseous, every single bite a physical nightmare.
“I’ll be in trouble if you don’t eat,” Peter said.
I tried, but failed. There was nothing I could do. It was physically and emotionally impossible. I knew in the long run that this had to change, too, if I ever wanted to leave the hospital. But I wasn’t ready for it yet.
Sleeping at home was independence; familiarity and devotion. I still needed help with everything, but it gave me an element of control. I was beginning to notice how my family was behaving. I could tell if Victoria had experienced a bad day in school. I could sense if Daniel would rather be playing with his dinosaurs than talking to me. I could see how exited Johan was to be able to hang out with his dad watching old movies into the night. And I noticed that Peter had a lot on his mind. He talked to me about some of it, but tried to hide the rest. I knew he didn’t want to worry me, but I could read him like a book. We talked about our life post-hospital, or rather, we settled into our routine of Peter talking, asking questions, and me lending a nod or a brief comment every now and again, mostly just a word or two.
He planned to put in a permanent ramp for my wheelchair and make a series of other adjustments around the house. Unsure if I was ever going to be able to return to work, he was contemplating how we would manage on his income alone. We would probably have to sell the house and move to a smaller place. We didn’t delve too deeply, but we were both increasingly preoccupied about how different our lives would be.
In the morning we celebrated Victoria’s birthday. As I watched her open the presents I didn’t buy her, I thought, next year, when she turns sixteen, I will be buying her present, I will bake the cake, we will plan her day together. I will be her mother once again.
As Daniel put on his coat to go to school, he looked up at me. “Mum,” he said, “do you think you could walk me in to school?”
Absolutely not, I thought. It was a crazy idea, but I didn’t have the heart to tell him.
I looked at Peter. He nodded and we silently agreed to give it a try.
“I’d love to,” I said, thinking how impossible it would be. I tried to control my nerves. I wanted to be strong for him. Peter helped me into the car and we drove Victoria and Daniel to school. When we arrived, we walked the twenty yards through the playground into the primary school, Daniel gently holding my hand. He smiled up at me, his eyes shining, and I thought, I’ve done it. I have done what he asked me. But it wasn’t quite over.
“You coming up to my classroom?” he asked.
His classroom was up a flight of stairs. I had climbed steps in the gym, but this was a different scale of challenge. I looked at the stairs. I could just as well have been staring at one of the most dangerous climbs in the world.
“I don’t think so,” I said. “If I make it up, I’ll never make it down.”
“I’ll help you, Mummy,” he said. “We’ll do it together. Take my hand.”
And I did. Suddenly he was no longer my eight-year-old son. He was a strong and independent young boy taking care of his mother. Helping me to put one foot in front of the other, comforting me every time the pain and cramps became too much to bear. Stopping on every step, and after what felt like an eternity but was probably only five minutes later, we reached the summit. It was one of the most moving moments of my life. To watch my son become my hero, my guardian.
At the top, after climbing twenty steps, I was shaking, sweating, thinking of my hospital bed. I was completely wasted, while Daniel was beaming the most wonderful toothy smile, proud beyond belief.
“You made it, Mum,” he said. “You made it!”
nine
Cutting
My fingers, blackened and withered, served as a constant, painful reminder of what was to come. The more active I became, the more I could do, the more they were in the way. I was afraid they would break off accidentally when I was wheeled down the hall or moving from my bed to my chair, or that one of my hands would get stuck under me and my fingers would rip off one by one.
I had been told from the beginning that the idea was to wait until they broke off naturally, but as this became more imminent, I started dreading it more and more. It wasn’t that I didn’t know how to prepare mentally for losing my fingers; my fear went far deeper than that. I was utterly terrified by not knowing how to live a life without them. I looked at my impossible hands, useless black claws, and I cried with my entire body, as if every single molecule was unhappy. It happened every time I looked down, every time I thought of my fingers, every time they were in the way, when they got caught in the bed sheets, in my clothes, in the wires that still connected my body to the bag of white st
uff I was consuming through my veins. Every single time, I felt the pain of losing them forever, for good, and there was nothing I could do about it.
My hands were suffering from gangrene, very similar to what happens when mountaineers get serious frostbite. You can get gangrene from a whole range of different things: injuries, diabetes, long-term smoking and infections, but the result is the same. Blood circulation is shut off and your cells die. Another name for gangrene is necrosis: death, the stage of dying. A dead cell cannot be brought back to life. When it dies, it is gone. When many cells die quickly, the body cannot replace them with new cells and that particular part of your body is closed down.
This is what happened to me. As soon as my body had shut down my skin got dark, cold, dry and hard, but when I woke from my coma I had already stopped feeling anything and had lost all sensation. I could still see parts of my body, but it was as if they didn’t belong to me anymore. Something that used to be me was dying, drying up and mummifying right in front of me.
Traditionally, gangrene has been dealt with by cutting off dead limbs before it spreads to the rest of the body. But as the orthopedic surgeon had patiently told me several times over, while my fuzzy brain tried to take in his words, the newly perceived view was that you could keep more of what was left of your body if you let the dead bits fall off by themselves. It also helped the healing process once they were gone, and it helped another problem I would inevitably face.
As an amputee, you have to live with an invisible experience. A part of your body is gone, but it still hurts, madly and maddeningly. These are called phantom pains. They are real and they are really painful. They feel like they are coming from body parts that are no longer there, but they sit in your brain and your spinal cord, not in your lost limbs. If your leg is cut off, you will continue to feel the pain in a missing foot. This is normal when a healthy body is dismembered. It is difficult to treat, and it seems so unfair that something you have lost forever will carry on giving you pain. But if the body is left to process a dead limb gradually, rather than simply cutting it off quickly, nerves will die a natural death and you are left with less pain in the parts that are gone. If you suddenly cut off the nerves in the human body, you mess up the rest of the system. If you let them part a little at a time, they will come to terms with it and leave you in peace.
The Blink of an Eye Page 11
