A few days later, looking at the doctor sitting in front of me, I was not sure if I had blacked out of a conversation again. It sounded like I had missed something important. I knew her. She was one of the intensive care doctors responsible for my treatment. I wondered what she was going on about.
“We wait until they fall off by themselves,” she said. “As the surgeon explained a couple of days ago, the gangrene will eventually stabilize; your fingers will dry up and break off. The surgeon will tell you in detail how it works.”
My eyes widened. Was she talking about my fingers? I had just woken up and was mostly concerned about dozing off again. My mind was still playing tricks on me. I had to remind myself where I was every time I opened my eyes. I summoned everything in order to concentrate and take in what she was telling me.
I couldn’t believe what I was hearing: I was going to wait and watch as my fingers fell off? In that moment I realized that I was a passenger in my own life, no longer calling the shots, and that I was not in control. I would never run my fingers through my hair again, never snap my fingers to a catchy tune, never learn how to play the piano, never draw again. And I would never feel my children’s faces through my fingertips.
I looked at Peter and blinked.
Once.
five
Breathing
The day I learned I was losing my fingers, the doctors took my air away. I had been breathing through a machine every day at the hospital. With every muscle paralyzed, I couldn’t inhale. My ventilator was doing it for me. Air was entering through a tube in my mouth and going all the way down into my lungs. The rhythmic sound of the ventilator added to the mosaic of sounds of the hospital, like an external heartbeat. It felt safe. But now my air machine was beginning to give me problems.
Wounds where the tube entered my mouth would not heal. My lips had built up black layers of coagulated blood, too fragile to clean. There were a lot of reasons why my coagulation system didn’t work already. To prevent further blood clots in my body and brain, I had been put on blood thinners. But this had to be carefully balanced. One of the ways Streptococcus pneumoniae destroys the body is by making blood vessels porous, so if my blood became too thin, it could start flowing freely in my body, and then I would die from internal bleeding. To prevent this, I was kept on a complicated medical cocktail.
I was growing used to the plastic in my mouth. It gave me a sense of purpose. My teeth grinded against it in my sleep. When the nurses repositioned it, taping it down to keep it in place, I fought against it—silently and secretly—raking the depths of my battered brain to activate neurons so that I could move a few muscles in my mouth to push the tube, even by a millimeter. It was one of the only things I had control over and I badly needed to be in command of it. My mouth was full of sores going all the way down my throat. It hurt. Everything did. I couldn’t keep my lips naturally moist, even if I wanted to. The high dosage of medication added to that, causing my lips to crack and preventing the sores from healing.
I was also unable to close my mouth, which exposed my teeth day and night, and meant that they completely dried up, eerily white and stained with black specks of hardened, sickly blood. They were impossible to clean, because of the tube from my ventilator and the risk that brushing them would cause my gums to bleed. The tube without which I couldn’t live was making matters worse. To this day, my teeth are sensitive to breathing, and I try not to talk outdoors in winter.
But little by little I was gaining ground. Now, when I woke up, even though it might still take a while, I knew where I was. But my identity was still fragile: shaky in the brief moments between opening and closing my eyes. I was still so very tired and every time I closed my eyes, I didn’t know if I would ever open them again. But if I could remember I had closed them when I opened them, I was winning. Remembering was control.
I could not extend that control to my breathing and needed my ventilator. Having the tube taken out of my mouth required a minor surgical procedure, the doctors assured me, and inserting a tracheostomy into my windpipe, a run-of-the-mill occurrence in an intensive care unit. Peter told me how great it would be not to have a tube down my throat, perhaps even to be able to close my mouth. “So,” he said, “what do you think? Shall I tell them to go ahead?”
I blinked twice for yes.
I was taken to the operation room. Things happened faster than I had anticipated. I wanted to tell Peter that I needed time to prepare myself, but I didn’t manage to get any signals through to him. In a few minutes, I was out and a surgeon cut my throat.
By the end of the procedure I was fitted with what, in technical terms, is a tracheostomy valve. Basically, it is a plastic tap. It left an open hole into my windpipe. Instead of the tube coming from my mouth to the ventilator, it now came from my throat.
I woke up in the middle of the night, drugged, disoriented, and full of pain, all the old terrors flooding my mind. I had forgotten everything; everything frightened me. I tried calling for Peter, I tried to pull myself up in the bed. But I couldn’t hear my own voice, and I couldn’t get my body to move an inch. I thought that everyone had gone and I was alone on the planet, that I was the last human left and there was nothing for me to do but to die.
The nurses working the night shift sensed my distress and ran to get Peter. I recognized him the minute I saw him and immediately relaxed.
“Hey, honey,” he said, trying to hide how concerned he was. “They tell me everything went well and it won’t be long before you should start feeling a bit of progress.”
What on earth was he talking about? I was utterly confused.
My body had closed down as soon as the anesthesia had kicked in during the surgery and my brain was following its now-familiar pattern. It was as if I had been switched off again and was now reawakening from my deep coma. My short-term memory had shut down once more. The tiny glimpse of hope from making a connection was quickly fading. Over the following days, Peter had to calm me down and explain what had happened over and over again. I became scared of falling asleep, afraid that I would never wake up, though I couldn’t explain my fears on anything other than a superficial level of exhaustedly spelling out words.
Peter was devoting every waking moment to me. He was either sitting by my side, reading or talking to me, or he was gathering information, reading all the scientific literature he could get his hands on. Peter and I lived a life buzzing with science. At home we talked all the time about new discoveries and medical breakthroughs. We studied the facts, scrutinized details, and weighed the evidence before making any conclusions. Now, Peter was learning about septic shock and multi-organ failure. He was reading up on the latest research on long-term coma, SLE, thrombosis, spleen calcification and all the complications following from all this combined. It was his coping strategy. To be prepared, to be there when I needed him. And to be able to communicate even the harshest truths to our children, our parents, the rest of our family, and our friends.
He wanted to be on top of things, but he never really was. Just as the doctors weren’t. He tried, though, and in all his grief, it helped. Peter was always focused, always present, even though the long days and short nights were taking their toll. He wasn’t eating, he wasn’t sleeping, and he was getting paler and paler. He knew the odds. He knew what the doctors were talking about, and they took him in as an equal. They started to have a real conversation. No sugarcoating and no nonsense. Because Peter is who he is, this was what worked for him. And because it worked for him, it worked for our children. It worked for me.
When he held my hand after my surgery, I couldn’t hold his. I needed him. I could not figure out how to tell him, and it was overwhelming me. My body ached for him. I wanted him to hug me, to take me in his arms and carry me away to a time and a place where we could do whatever we wanted. It was as if my brain was calling up every one of its nerve endings. I concentrated hard, putting all of my energy into my face. Nobody else would have noticed, but when I almost invisibly puckere
d up my cracked lips to get a goodnight kiss, Peter did. Maneuvering in between tubes and wires full of air, food, blood and medication, he found a way. Our first kiss. An uncomfortable, awkward, but completely wonderful, kiss.
In the days after the surgery, everything remained hazy and the noises around me were indistinguishable. But slowly I began to remember people and what had happened. Change could come in the course of a single day. One afternoon, I could suddenly follow the nurses’ instructions to open my mouth or close my eyes when they washed me, brushed my teeth, or combed my hair. In the morning, I hadn’t been able to do any of that. Things were getting better and I embraced it all. I wanted to take every single step, as long as it was taking me somewhere else, away from this place.
The first direct result of the operation was that I was able to get air more freely and I was no longer feeling the constant pain of the tube cutting deep wounds in my mouth. The ventilator was still breathing for me, but one of the nurses told me, “It won’t be long until you can start breathing by yourself. Bit by bit, Rikke. In fact, we are going to try it out later today.”
What was she talking about? Had a doctor agreed to this? What happened if it didn’t work and they’d turned off the machine? Would I die? Questions and panic were building inside me. I desperately did not want them to turn it off. I had no faith in being able to breathe by myself.
And yet I couldn’t wait.
There was another huge difference, too. After thirteen long, bleak days, Peter and the children could see my face. Not the face of white plastic tubes and adhesive bandages to keep it all in place, but a human face. There I was. They saw me for the first time since I left the house, the face they knew so well and could read better than any book. To anyone else I was still a horrifying sight, but to Peter and my children, to my mum and my sister, who were still only allowed to see me sporadically, it was a sign that I might be returning to them.
Another day went by before they risked taking me off the machine. For the first time in two weeks I was now, suddenly, supposed to breathe by myself. I was scared out of my senses. I was trying to remember how to do it. I had learned to breathe within the first ten seconds of being born and I had never had to think about how to do it. Pulling air into my lungs, pushing it out again, regulated by centers in my brain. It happened automatically. Now, lying here, unable to do anything for myself, how could I be sure that the rest of my body hadn’t suffered from amnesia the way my brain had? How could I be sure my body was going to do what it was supposed to do, when it couldn’t figure out anything else?
“OK, Rikke, let’s get on with it,” the nurse said.
There was no doctor present, which alarmed me. Peter was standing by my bed trying to look confident, but was clearly not very comfortable.
I blinked once, but the nurse ignored me.
Within seconds, I was off the ventilator. It lasted less than two minutes. I would like to say it felt good, but the truth is, I felt as if I was going to die. I was pining for air, and my body was imploding from within. I wanted to scream that I needed the machine back on. There was no air coming through my mouth; it was all blowing straight through the open hole in my throat. Air was simply leaving my body as panic rose and darkness closed in on me. I was sure I’d lose consciousness and who knew what else. In a history of bad ideas, this felt like the worst.
After what seemed like forever, I was back on my beloved oxygen. I relaxed. I never ever wanted to breathe without my ventilator.
I hated it, but I knew I had to persevere. There was no going back. At first it was just a few times a day and not for very long. Each time was equally painful and frightening. I felt like a punctured tire.
Peter was always there, encouraging me—“You’re doing brilliantly!”—but he was unable to hear my internal screams.
I didn’t even notice when I finally breathed for myself.
“Sweetheart! You’re breathing! You’re doing it!” Peter and the nurse were keeping a close eye on the monitors.
I heard them, but I couldn’t feel what they were telling me. It was bizarre: the oxygen levels in my blood were dropping, I was suffocating—and yet they were celebrating. The hose was put back on and I was soon within the normal saturation range. Somehow, apparently, I had started absorbing oxygen from the air around me, and this meant that for a few seconds, technically, I had been breathing. I wasn’t very good at it. But suddenly I understood what the word meant. Even if it had been the hardest thing I had ever done, I had been breathing, on my own.
And the world changed again.
The next step was to fit a small device onto the tracheostomy sticking out of my throat, which would allow me to speak. I found that hard to believe. A valve would force air past my vocal cords, which would theoretically let me produce sound. This is the very foundation of speech. With no air coming through, there is no sound. I was desperate to try.
“Everything looks fine and works properly. You should be able to say something anytime now,” a nurse told me. “Patients are often rather good at it.”
OK, I thought to myself. If other people can do it, I can. Without thinking about actually what to say, I opened my mouth.
No sound. I tried again. Still, no sound.
This was not going the way I wanted. I started coughing up congealed blood that had been sitting in my throat. Still, I couldn’t say a thing.
“You shouldn’t worry about it, Rikke. This is also perfectly normal,” said the nurse. “It will come.”
I had hoped so much to be able to speak. The medical staff rarely used the spelling board. Only Peter and I spelled out longer conversations. To everybody else, mostly, I was answering questions by blinking for yes or no. I wanted more, I wanted to participate so badly. I wanted my voice to be heard. But I did not speak that afternoon.
Lying alone with my thoughts, I realized how much becoming a mother had changed me. My perspective had altered, and I’d learned to appreciate there was something bigger and more important in the world than myself, someone to take care of and protect. To this day, I will never be able to describe the pain I felt, unable to touch or talk to my children. It went far beyond the physical. I wanted to protect them, shield them from the pain they were feeling. I was trying desperately to express my affection for them, to let them know how much I cared about them and that I was still there for them. But how could I do that by just blinking? I missed them. All the pain in my body didn’t touch the agony of not being able to give them a hug or stroke their hair.
Daniel told Peter that he was afraid I would never come home again, and that life had changed forever. At eight, he was preparing to live without his mother. But in all those months while I was away from home, he never told me how he felt. He kept up appearances for my sake, to protect me, who should have been protecting him.
The children came to see me every day, in the afternoon or in the evening. While I lay in bed, they sat around me, chatting, doing their homework, reading, sometimes singing—anything to keep their constant pain at bay. Part of their daily ritual was getting something to eat at the hospital cafeteria. Everybody working there soon got to know them. They knew what was going on, even if they didn’t know me. Peter saw it in their eyes, the tiny nods, the small gestures of an extra scoop of pudding or a little treat. Sometimes when they came back after their meal, they were chatty. In this grim setting, any distraction was an adventure. But it only lasted for so long before the harsh realities hit again, and silence fell upon our tiny flock.
After two full weeks I was stable enough for Peter to be able to go home. He had been living at the hospital, never leaving, never more than a few minutes away from me. His room was needed by someone in greater need than him. Peter’s pregnant sister would be able to go home, and the children, who desperately needed their father, would be reunited with him.
He had gone through the worst time of his life over these past couple of weeks, through unimaginable scenarios filled with disbelief and pain beyond words. All that
time he’d had to be strong, for me and everyone around me. When he returned to our house, he had to re-enter life outside the closed environment of the hospital and be strong again for the children.
Victoria was hugely relieved by this turn of events. With her father out of the house, she had assumed a greater responsibility at home. With grandparents, aunts, and everybody else around her deep in their own grief, it was sometimes hard to appreciate her needs. She needed her father to let her be a little girl again.
Peter brought safety and comfort back home. He talked with the children, laughed with them, made dinner and, that evening, tucked them in, one after the other, none of them too old for such tenderness.
But then he collapsed. He broke down, the weight of grief pushing him to the floor by the radiator in our living room. For the first time since the ambulance left with my dying body, he cried. He could still hear the panic of the paramedics, the syringe falling on the tiles. When we’d first got together, we had assured each other that neither of us would ever be alone again. But we were wrong. Now he was alone, and he was feeling the weight of it. Every last ounce. In addition to charting and documenting on paper what was happening to me, Peter had been photographing the equipment, medication, charts, and clinical journals as well as my room, the children, the flowers and cards. He was building a private photo archive for me, even detailing the stages of how I looked, every little fluctuation in my condition. In the beginning, he took what might have been the last pictures he would ever have of me. He wanted to hold on to me. He wanted to keep me. And then, as I began to recover, he wanted me to see the journey I had made. These photos were snapshots of our love.
There were no easy days, no routines, nothing I could simply tap into and relax. Everything tested my mental and physical limits. I had to be turned, lifted and moved every few hours to prevent bedsores. My body was still paralyzed, but with a tremendous effort and patience from therapists, I was beginning to connect with a few of its individual parts. It took three people to get me lifted from my bed and turned so I could sit up, though sitting wasn’t really the right word. I was propped up like a bag of potatoes, unable to support myself. If any helpers had let me go, I would have fallen flat on the floor.
The Blink of an Eye Page 6
