Every single time I was scared witless. What if one of them slipped or another wasn’t paying attention and failed to give me proper support at the right moment? The only thing I could do was to watch as my body was moved around and hope that nothing happened. I couldn’t even give a shout of warning. I was a helpless mute, a desperate passenger, while others tried to maintain my body by moving its parts. It had to be done if there was to be any hope whatsoever that I would ever stand a chance of one day moving on my own. It was nauseating and frightening. I hated it.
Sitting or having my arms moved, I was told, was the equivalent of my running a marathon every single day. It felt worse. I was still locked inside my body, unable to talk or move, getting all my nutrients and water through my veins. I was still utterly dependent on my ventilator, but the time I could manage without it and breathe on my own was gradually increasing.
I was showing few signs of improvement. I had been on dialysis since being admitted, as my kidneys had stopped working completely and couldn’t clean my blood. Without dialysis, waste products would accumulate in my body and eventually become lethal. A tiny drop of urine in a bag was celebrated as if it was my birthday, and as I began showing slight progress, the doctors decided to take me off the machine for a short while. As with the breathing, my body had to be pushed to do it, but as my kidneys responded reasonably well, the length of time off dialysis also increased, even though every now and again I had to have my system cleaned properly and go back on the machine.
I was beginning to get used to spending nights on my own, though I was never really alone, as a nurse had been assigned to me twenty-four hours a day. Peter went home every evening to be with the children. We lived over an hour away from the hospital, so it was impossible for him to return once the children were asleep.
One evening I managed to get the nurse working the night shift to pick up the spelling board.
Together we meticulously pointed and blinked “P-e-t-e-r” on the board.
“Do you want to talk to him?” she asked. It was her first shift with me, but she was already sensitively attuned to my thoughts. “Do you want to talk to him on the telephone?”
Could I? No one else had ever suggested that. Peter always called before bed to get a status report, but only ever talked directly to the nurse on duty.
I blinked twice.
The nurse called him back and put him on speakerphone. Then she withdrew to give us privacy, but not before she had told my news to Peter.
“That’s amazing!” I heard him say. “The nurse just told me what happened after I left today.” Then he told me: The nurse had put on the simple one-way speaking valve on my tracheostomy for a few minutes earlier that evening. Air was allowed in but not out and I suddenly found myself able to blow air, ever so little, through my teeth, making a hardly audible and yet quite distinct F-sound.
“Your first real sound!” Peter said, enthusiastically. “That’s fantastic!”
I knew immediately that he was disappointed not to have been there—as if he had missed seeing the first steps of one of our children—but at the same time, he was so full of joy celebrating this crucial breakthrough with me on the phone, and now I had made one sound, maybe I would make more tomorrow and in the days that followed.
“Good night, sweetheart. I’ll see you tomorrow. Sleep well. I can’t wait to tell the children.”
I wish I could have said something in return. And as I was still struggling with my short-term memory, in that moment I actually had no recollection of my sensational F-sound. But Peter was making me feel proud nonetheless.
I closed my eyes. I was on a roll: I was breathing, I was peeing, and I could say F.
Time for me to get started on the rest of the alphabet.
six
Healing
A few steps forward were always followed by a few steps back. My state of being was a constant, delicate question of balance, and I could go downhill fast. The doctors and nurses took regular readings of my temperature, blood pressure, saturation, heart rhythm and rate and on top of that, anything else that could indicate change within my body.
All sorts of things could be ascertained from the reading of my blood, one of them the levels of C-reactive protein, or CRP for short. Scientists studying Streptococcus pneumoniae discovered that patients like me suffering from bacterial infections produced very high levels of CRP. It has now become a general indicator of an infection and is one of the best ways of keeping an eye on how the body is coping with it. Ever so slowly, day by day, as the bacterial storm raging in my body calmed down, my CRP levels decreased. This was a clear sign of healing, but it was no reason to celebrate yet or be complacent. It took very little to knock me out of kilter and my levels would rise again.
I had grown used to the constant comings and goings, the different greetings and mannerisms of the medical staff who came to care for me in any one day. There were doctors, nurses, and therapists I had grown fond of: ten, maybe twenty people a day. From very early on, I could identify the nurse who took my blood from the sound of her cart. I heard her before I saw her. Sometimes I wondered if she was trying to keep out of sight. She was neither friendly nor unfriendly. After saying hello, she got to work. She had a job to do, and I was only one of many patients on her rounds.
My veins were getting increasingly difficult to draw blood from, so I had been fitted with a kind of tap straight into my vein. This made her job easier, as she did not have to bother me trying to pierce my skin in the attempt to tease anything from my exhausted veins. She could drain my blood while I was asleep and many times I did not even notice. She screwed small canisters onto the tap, one at a time, and I watched as they steadily filled up with deep-dark red blood. As my blood drained, she didn’t talk to me, only got the next tube ready to screw on, and when she had finished, she left as quickly and efficiently as she could. She never spoke to Peter. She must have believed that most of the time relatives would rather be left in peace. It was better to be on the safe side and drift into anonymity, serving your function and nothing else, and leave quietly and unnoticed. Later I learned it was seen as a badge of honor by some of the medical staff to be invisible, never to get involved, to let healthcare professionals be an anonymous, well-functioning curing machine.
Three weeks after I was hospitalized, we got an explanation of why I couldn’t move. I was diagnosed with critical illness polyneuropathy, CIP for short—a paralysis of the nerves that control muscles—which had caused a loss of movement or sensation in my body. It usually increases with the length of stay in intensive care and it raises the possibility of death. Doctors told us there was a 50 percent chance that it would pass, and I would be able to move again. This was splendid odds compared to earlier. I was still almost nothing but an oversized human cushion; however, I was making progress. Peter was encouraged. He told me that one day I might even be able to get around in a wheelchair. Hearing this, I decided to fortify myself mentally to make more progress, whatever it took.
I was more awake, more conscious, and ready to talk. I was using the speaking valve regularly. I had so much to say, so many questions, and an overwhelming urge to participate in life and conversations around me. But no words, not even a single syllable, came out. While I was still locked in a body that would not obey my simplest commands, I was sentenced to talk to myself. I was, though, now able to follow some of the activity and conversations that took place around me, especially among the nurses in attendance. Sometimes they talked about me, but mostly they talked to each other about what they had done over the weekend, what was happening in the hospital, on the news, in their lives. I had no choice but to listen. They weren’t talking to me because of the damage to my brain; some assumed I couldn’t follow what they were saying. Sometimes I found myself eagerly awaiting the next installment in a particular story, but often I learned to conserve my energy by not concentrating hard on everything being said, and anyway, I still slept most of the time.
Most people o
n my medical team talked to me, looking me in the eye when they explained things to me or talked about my family, the photographs next to my bed, all the letters and the flowers still pouring in. I had so much I couldn’t say back. The spelling board was rarely in use, as it was exhausting for everyone involved. It took patience, time, and stamina and as I was gaining more control of my facial muscles, I was trying to use my eyes more to communicate. It was a real revelation to me how much effective communication could take place from merely looking another person in the eye. I was also beginning to mouth more words. My most often-used phrase was still “never mind,” following minutes of trying to convey a message like “my hand hurts” or “I’m so happy to see you.”
Peter’s tenacity and patience was invaluable to me. He could tell that I was able to understand far more than others realized. He knew I was in there, that it was me and not a chronically distorted, brain-damaged version of me. He and I talked about the possible brain damage. Sometimes a conversation could take days, but he persisted in staying with me as I slowly spelled my way through questions about what had happened to my brain, organs, and hands, and what would happen to me in the future. I wanted to know everything, and Peter answered truthfully. One day, as he once again meticulously went through everything from the ambulance to me waking up in a paralyzed body with multi-organ failure, I was finally able to express my feelings in a single word. Peter read “horrible” from my silent lips.
“I know, sweetheart,” he said gently. I closed my eyes. One Sunday morning when my family came to see me, Peter could tell that I was not feeling well. I had always tried to spare the children any further distress, but I had never been very good at hiding anything from Peter. He asked me how I had slept.
“Thinking,” I mimed slowly and looked him deeply in his eyes. “I’m scared.”
At night, the demons came.
Whatever was going on with me, Peter was always allowed into my room, to be by my side. It was clear that I was calmer and more attuned to what was going on around me if he was there. And while the medical and therapeutic staff got on with their work, he sometimes chatted to them, asking them questions or, as I was improving, answering their questions about my progress.
One morning, Peter was standing outside my room with a nurse, getting last night’s updates. The signs were good. I had responded well to everything the previous day and throughout the night. I’d had a good night’s sleep. The nurse on early morning duty had just finished getting me ready and had elevated my bed slightly. I was being dressed. The nurse suggested that Peter wait outside for a bit before coming in and seeing how much better I was.
As she talked, I tanked. My pulse and heart rhythm dropped drastically, my oxygen saturation plummeted, and I fainted. All of a sudden, the situation was one of panic. Doctors and nurses flocked around my bed in another life-saving effort. The nurse talking to Peter ran in, closing the door on him.
After lying on my back for several weeks in a row, gravity had kicked in. My left lung had partially collapsed, and my lungs were no longer inflated at full capacity. The mucus stuck in my deflated lung could cause a serious infection that would be difficult to control, a relatively common precursor to a fatal dose of pneumonia. I had barely survived one infection; I was most certainly not ready for another.
I couldn’t get rid of saliva and spit. Lung specialists were rushed in to find a way of treating me urgently without worsening the fragile state I was in. Trying to let me breathe on my own had quickly turned into mortal danger, and I was put back on the ventilator. They hurriedly installed a different kind of valve in my throat from which they could draw fluid directly through the nozzle. A simple contraption for a delicate maneuver whereby a nurse uncorked my throat and stuck a long thin plastic tube into the hole all the way down into my lungs. Like a vacuum cleaner, my new machine sucked the blood and slime stuck in my lungs. The pain was excruciating.
I hated it. I was ready to sacrifice the lung they were trying to save. In attempting to remove the obstacles impeding my breathing, the plastic tube rummaged around in my delicate lung tissue, and it hurt so badly I could hardly stand it. It felt as if I was falling fast—not exactly back to square one, but close. I was weak, and I couldn’t stand the pain and, to counter another infection, I was put on a complex blood dialysis lasting four hours, rinsing my blood for waste products while everything else burbled away.
Peter had to wait a full agonizing hour before anyone told him what was going on. By then I had already been fitted with my new valve, and attempts at sucking my lungs free and inflating the collapsed lung again were made. He had seen doctors and nurses run into my room, wearing serious expressions with no time to explain what was going on.
And I had no strength to tell him myself.
I felt for Peter being at the mercy of other people’s concern. Being in an intensive care unit, he witnessed terrible despair and desolation, sometimes relief and hope. Later he told me that he learned to read the relatives of existing and new arrivals, how to manage their looks of concern as he came in to see me day after day; how to focus on fragments of hope or anguish communicated through passing looks and nods. He learned the tacit language of grief-stricken outsiders confined to waiting in hallways, while there was nothing for them to do. On the day my lung collapsed, he took in their compassion and understanding. Theirs was a shared language of coping; the poetry of grief.
He also got to know many of the professionals who were caring for me, distinguishing among those who wanted to talk and those who didn’t. There was the grumpy older doctor who brightened when he and Peter talked about the latest details of research on infectious diseases; the young doctor who’d seen so much but not enough; the skinny nurse on night duty who talked about going out clubbing but so often stayed on, lighting up the last hours of some patients in her care; the porter who loved art; the physical therapist who threw herself into her work with the same dedication as an Olympian coach. Peter was spending so much time in their company that this new cast of characters became familiar—not close, but near—as he gradually grew out of being an intensive care rookie.
My fever kept coming back, with new signs of infection. Antibiotics were administered carefully, intravenously, but despite a constant flow of medication, I was still incredibly sensitive, an easy target for the old infection to strike again and new ones to aim for. Even after three weeks in the ICU, the doctors were unclear as to exactly where my original infection had begun, though they thought they had narrowed it down to my lungs or my sinuses. A new group of medical experts conducted an ultrasound test confirming an abnormal accumulation of fluids in the sinuses and so, to prevent anything new from building up, I now had to have drainage tubes put up my nose. Effectively the tubes were made up of tiny microsuction pipes that were used to rinse my sinuses every day. Yet another piece of plastic, making it increasingly difficult to tell where my own body began and ended.
And it hurt. Before all of this happened to me, I would have said that it hurt like nothing else. Now it just hurt like everything else.
So did breathing off the ventilator. But I had to do it, as my life-supporting air machine was now a major contributing factor to my physical deterioration. I would never overcome the CIP that was paralyzing me if I did not start moving my body. The doctors had to find a way for me to activate the muscles controlling my breathing, if I ever hoped to be able to do it completely on my own. The most effective way of doing that was through a process of suffocation—by taking the air provided by my ventilator away and thus forcing my body to react. After my lung had collapsed I was more fragile, so it was more difficult to breathe unassisted. I felt as if I were drowning in air. But, as the doctors explained, breathing on my own was the only way to inflate my sticky lungs, glued together by blood and phlegm and sealed by gravity.
I hated it. I truly did. Like everything else at the hospital, it had now turned into something I would rather never see or feel again in my life. But I also knew there was no
way around it and that for now, I was utterly dependent on the equipment and help that I loathed so much. The hospital was both my threat and my safety, the only place in the world I could survive. I would not last half a day on the outside.
Then there were good signs. My potassium levels were dropping, indicating that my kidneys had started working again, ever so slightly. Perhaps, if I recovered and was able to return home one day, I would not need lifelong dialysis. Even if I did, doctors had assured me I could still lead a rich life. I should have felt grateful for just surviving. I was and I wasn’t—a mass of contradictions.
While my body was slowly healing, I was gaining ground in my mind. Just enough to realize how much was wrong with me and how terrifying it was to be confined to my bed, unable to participate in my children’s lives. It was like a living hell not to be able to talk to them, or to laugh with them, or gently to wipe away their tears and tell them that everything was going to be all right. That their daily visits, and Peter’s near-constant vigil, was what stopped my mind from descending into freefall.
As my mind became stronger, a new problem appeared. I started dreaming, but with that my conscious and unconscious mind began to merge. This was not a good thing. Being in a coma had, in some ways, been gratifying, as I’d been completely out of it. If I had been dreaming, I hadn’t realized it and I certainly hadn’t remembered anything. And since coming out of it, I had used everything within my grasp just to hold on to myself, to try to regain some control while awake. But now, I couldn’t always work out whether I was asleep or awake, if I was experiencing a reality or dreaming my way through the moment. In short, it was getting increasingly difficult for me to distinguish between what I was thinking and dreaming, and what was actually happening.
The Blink of an Eye Page 7
