I was getting delirious. This is completely normal for patients after emerging from a long-term coma, lying for days on end in intensive care. Ironically, a nurse had told Peter about this form of delirium by saying how extraordinary it was that I had no signs of it at all. She had spoken too soon. The next day, I became fixated on—and beyond outraged by—the belief that Peter had paid a therapist an exorbitant amount of money to give me a massage, but she never turned up. I was convinced she had just pocketed the money for a service never rendered; but this was not the only source of my outrage. I was also overwhelmed by the idea that she had been able to swindle me in Intensive Care. If there were thieves running around the ICU in a major hospital and nobody else noticed, then how could I ensure I was safe, that my children were safe when they came to visit me?
I had to tell the staff. I had to warn them. But then again, what if they were in on it? Could I really trust the doctors or the nurses or my therapists? And what about all the medication they were feeding me around the clock? What was the real reason I could no longer move or talk? Was I a prisoner? An experiment? As my delirium took hold, the familiar sounds lulling me to sleep were now threatening. The walls were closing in on me. The room started to turn and tilt. The ceiling dropped. Now the only thing I could hear was the sound of my own blood, like rhythmic mini-storms raging in my ears. I had to get out before they finally took me over. I was still in with a chance.
I needed to find out what we were going to do about the therapist, and how we could call her to account. It took me an entire day using the spelling board, mouthing, winking, sleeping, and waking up to tell Peter about the rogue masseuse running wild at the hospital. At first, he was utterly confused and had no idea what I was going on about. Then he realized the delirium was hindering my progress.
He was right. But it wasn’t only the delirium. I was suffering from a constant fever, my sinuses were being brutally rinsed with saltwater, my lungs routinely vacuumed for blood and slime. My CRP was going up and down, indicating an infection that was proving difficult to get rid of. I was still operating on a faulty short-term memory. My life was now what I experienced when I looked around. Sometimes bits and pieces stuck for a few hours, like memory debris, but most often they slipped away again.
I was, however, gaining an understanding of how seriously ill I was and could grasp some of the consequences. As I was still unable to talk, I spent most of my waking hours scanning my room. Peter noticed that I was spending more and more time looking at my hands—my black and dried-up fingers that would never heal. Johan had seen this, too, and had asked his father about them; Peter explained what our oldest son had already guessed.
To protect Daniel and Victoria, the nurses had the habit of covering up my hands during visits. One day, the nurse forgot, and they saw. They didn’t say anything to me, but as soon as they got back home, they bombarded their father with questions. He told them the truth—that it was likely my fingers were going to fall off. They all cried, Daniel and Victoria unable to stop. In an effort to comfort them, Peter prepared their favorite snacks and made a comforting pile of duvets in our bed. Eventually they all calmed down and fell asleep, a tangled family bundle. Despite all the progress I had made, our children now knew that some things would never be the same again.
I was not the only one who needed to heal.
seven
Tilting
I had physical training and occupational therapy every day, even when I was still in a coma. Because I was completely paralyzed, I lost body mass fast. Muscle weakness had set in only a few days after I went into coma, and from that moment my body had started, and now continued, to wear away. This affected my blood circulation and breathing, which made me even more vulnerable and reduced my chances of full recovery. The only way of maintaining muscle mass and preventing serious side effects was to move or be moved.
Doing so required a team of specialists trained to shift my limbs gently without doing any damage. I was assigned a physiotherapist and an occupational therapist. My physio focused on general mobility and muscle strength, while my occupational therapist zoomed in on specific tasks such as grabbing or holding an object; though initially, all she could do was to massage the non-damaged parts of my hands and feet. For several weeks, I didn’t participate actively in any of this. Everything was done to me, and even when I moved into a more conscious state, I was a passive observer. Peter wanted to help as much as he could and quickly became adept at lending a hand.
The first time I was maneuvered into a semi-upright position at the side of my bed was after three weeks of being admitted. It took a group of three professionals—and Peter—half an hour to get me up, hold me in a sitting position for ten seconds and then lower me down, back into bed. It was a complicated procedure involving a transfer sheet and a lift, a bit like a large robotic arm picking me up in a carrier bag. These maneuvers were followed by several hours of exhausted sleep. To an outsider, ten seconds of sitting up would have barely registered as progress, but for me, every second of being upright was like climbing a mountain. After a week, to the delight of my therapists, I had pushed the record for being held in a sitting position to eight minutes.
As I was placed on the bedside, held up by physiotherapists and straps, I could do nothing. I was exhausted. My straggly hair was rumpled and my body bruised all over. My head was bent over my chest and my arms dangled lifelessly by my sides. All my muscle control had vanished. My eyes flickered, unable to focus, and I could not see properly. I could barely breathe, I couldn’t talk, and I couldn’t smile.
But I had no choice other than to persevere. I had no way of refusing the physio. As with everything else, I was at the total mercy of those caring for me. After I regained some consciousness, I did my best to make eye contact with Peter during these sessions. If one of the physiotherapists asked if I wanted to continue, I blinked for yes and locked my gaze on Peter. I rarely blinked for no. Peter encouraged me to continue, safe in the knowledge that willpower and stubbornness had always worked for me; he was convinced they would carry me through this rigorous physical regimen.
My therapists were also always encouraging. They told me that with the right training, one day I might be able to walk again, even to work again. In the beginning, I reacted instinctively against the intimacy of being handled by strangers. But then I became used to it and it soon became part of who I was. The therapists knew exactly how far they could push me. What they did marked progress. I could feel it.
Not only had I lost muscle mass and lots of it, I had also completely lost any connection to my muscles through the nervous system. Most of the wiring was still there, though in some places the damage was so bad it had to regrow. If it didn’t, I might never be able to lift certain parts of my body. Like a baby, I was learning to hold up my own head: tough, as the brain is ridiculously large compared to body mass. I also had what the doctors charmingly termed “foot drop” and at this early stage, there was no way of telling whether or not I would ever be able to lift my left foot. The only thing I could do was to keep trying, even if there was no reaction. The physios assured me that by continuing to push, something might happen.
Of course, no one really knew the extent of the violent pain shooting through every limb as I was hauled into a sitting position, creaking and crying, objecting to any movement after doing absolutely nothing for so long. It was as if every single joint was calcified and locked and that the slightest movement was going to break them out of their frozen positions. My therapists had learned from their training and experience how distressing this part of a patient’s recovery could be, but as none of them had been where I was, and as few patients were truly able to communicate what it felt like afterward, how could they know? In those sessions I felt the physical and mental pain of being locked in, unable to share the agony and fear, while silently I screamed my head off.
Everybody was getting used to me being a mute, my communication confined to blinks or the occasional attempt to mouth
words. Since my F-sound, little had happened. Every question was tailored around questions that required a yes or no answer. This took patience and skill, but as there was no other way, we all adapted. It is amazing how much you can say without words. This was our new normal.
One day while the children were with me, the nurse put the cap on the trach valve, as she often did. None of us paid any particular attention to it. Johan was dabbing ice cubes on my wounded lips to wet them and soothe the pain, Victoria was massaging my legs and Daniel, who had been telling me a story and had now finished, blew me a kiss. Suddenly, something felt different. I felt a sense of control over my mouth. I wasn’t sure if it meant anything, but I was ready to give it a go. After a few carefully controlled breaths, I went for it. I didn’t know if I would succeed, as my first word came out.
“Weird.”
Everybody froze and looked at me. My first word in four weeks. You can fill pages detailing everything, or you can cut it all down to a single word. It was weird to talk. Weird to breathe properly. Weird not being able to move. Weird to wake up and gradually realize what had happened. Weird that so many days had just disappeared without my ever being aware they were there. Weird to look at the children and not be able to hug them.
Weird. It made my family laugh like a thousand bubbles of happiness had been released into the room.
“It’s so like you to say something like that, Mum!” beamed Victoria.
That day things changed for them. A certain lightness had re-entered our lives, more familiar to our family. They started talking more around me in their normal voices, sometimes totally unrelated to me or my situation. I said very little, in fact close to nothing, but I was no longer speechless. My re-entry into the social space of exchanging meaningful sounds had been successful and was celebrated accordingly. I was still me, even if I was locked to my bed in a useless body.
Weird. It simply had to be my first word. I was unable to speak any more that day, but I felt I had summed up the situation pretty well. I was making progress. If anything, it felt weird.
A couple of days later, I was strong enough to be on the speaking cap for forty minutes. I could not yet manage an hour without my ventilator, but I was getting there.
“Tell me,” I said, with great effort.
“Tell you what?” Peter asked.
“Everything,” I mimed, still not strong enough to say everything I wanted to out loud.
It was always a team effort to move me, be it to wash me, put me into a sitting position, or, my newest trick, to move me into a chair. A combination of nurses, porters and therapists followed a well-tested routine. They knew each other well and chatted away as they got me ready. There were moments when the informal chatter, that special kind of laughter you get when everyone clicks, filled the room. Peter was also part of the team, familiar, ever-present, ready to give a helping hand when needed, but careful not to get in the way, enrolled in the circle of trust.
I just lay there watching them.
I knew the routine well by now. First my duvet was removed, within one minute of which uncontrollable shivers would engulf me. With most of my body fat gone, my temperature dropped dramatically. This would last the entire session. Then I was turned onto one side. I always hoped it was my right. I hated lying on the left side as my breathing didn’t work properly because of the collapsed lung. I was still in pain and incredibly uncomfortable. Compared to that, the right side was bliss.
Next up was placing the transfer sheet used to lift me from the bed, making sure the straps were in the right position to pick me up. The sheet had to be tucked in behind my back and I could feel fingers trying to push it under my shoulders, arms, hips, and legs. I could hear the shuffling of busy fingers against the starched linen. Whatever position they placed me in determined my line of limited vision, defining what I could see.
This was the easy part, quick and rarely complicated, unless the nurse was new, or the porter had not attended to me before and had to get used to the sight of my hands. They always startled newcomers. Everybody tried to hide their reaction, but I noticed it every time. They couldn’t take their eyes away from my dried-up, dead, black fingers. I could almost hear the questions inside their minds, and I knew for absolute certain they would ask them as soon as they were outside the room, away from my line of hearing. I was facing the ceiling. I knew every line, every corner, every tiny fault in the fittings. I could feel the group of people pulling at the transfer sheet from under my body, trying to fit it with geometric perfection for the next stage, the lifting. All the corners of the sheet were attached to a mechanical arm powerful enough to carry a very heavy human being. Picking me up was nothing. In the sheet, my arms and legs would fold as my body was held by the fabric, the only thing stopping me from dropping on the ground. I couldn’t help seeing a large hole at the bottom of a sack of potatoes and imagining myself falling out.
One day as I was being lifted, the physiotherapist said, “Rikke, today you are going to try something new.”
She started telling me about a “tilt table” that had been brought into my room and how today I was going to be put on it and steadily tilted until I could feel gravity in my legs and feet. Alarm spread through me.
Peter beamed at me. “This is great, honey; don’t you think?” I know he was acting cheerfully in order to encourage me but, seriously, did he not see the inevitable disaster as clearly as I did?
The table was alien, terrifying, and impossible to understand. I understood the individual words, but could not make sense of their meaning when they were put together. How would you explain a traffic jam to a person who had lived her entire life in the deepest jungles of the Amazon? To everyone else in the room, it was obvious how the tilt table worked.
Usually my main concern was that while I was being lifted, someone would unintentionally tear my fingers off. It had not yet happened, but sometimes came fearfully close. At various moments in the stages of lift-off, some of my fingers were bent, pushing against the linen, and the meat and bone showed. One time my arm was caught in the sheet carrying me and excruciating pain shot through my upper body, as I thought my bone would simply snap like a twig.
At the time I was unable to make any sounds at all, but Peter caught the desperation in my eyes and alerted the staff. They lowered me down and the pain slowly dissolved and I drifted away. After that, they took greater care when lifting me. It never happened again, but the fear of something going wrong stuck with me. I was afraid, every single time I was lifted. But the idea of being tilted brought new levels of fear.
I was unable to support myself. Couldn’t they see that I would collapse instantly? What if I slipped and fell on the floor? What if it all happened too quickly for them to react? What if I landed on my face and banged my head on the railings or crashed onto the floor? Could my fragile body and brain take such an impact? What if my fingers broke off in the fall and they couldn’t stop the bleeding? Black, broken-off fingers on the floor, blood everywhere, and me with a cracked-open skull and my sparse remaining hair torn out. How could they do this to me? I was terrified.
I looked up—the only thing I could really do because, as with everything else, I had no say in what was done to me—and watched as the mechanical arm swung into position. The sheet was prepared, hooks were attached, straps tightened, and all the tubes and wires were dutifully taken care of. The porter pushed the button and my unresponsive body bent, head and feet levitating first, leaving my rear as the only connection between me and the safety of my bed. Then, suddenly, I was floating in the air. It took me by surprise.
I watched the distance between me and the ceiling grow. I heard the humming of the lift. I knew I was going down, but I was still horizontal. This was unusual and no attempts were made to turn me to a sitting position. My skinny buttocks served as landing gear. This was no small step for Man, no giant leap for Mankind, no Tranquillity Base. Only a miserable bag of motionless flesh and bones disembarking on a portable tilt table, whatever th
at was.
“Rikke, we’re just about ready. You’re almost in place now,” came the voice of my physiotherapist, though the pounding of my heart nearly drowned her out. I was cold, my body was shaking and sweating. I wanted to go home. Home to my bed a few feet away. I heard the sound of velcro as my body was strapped to a table.
Ever so slowly the table started to tilt. It felt instantly like I was sliding down from it. Panicking, I tried to get attention with my eyes, opening and closing them, quickly, repeatedly, staring wildly into the room. No one registered my terror.
The tilt table went all the way up to an angle of fifty degrees above horizontal. I felt as if I was standing on the top of the London Eye with no railings, sure to fall at any minute. I was dizzy like crazy and ready to throw up, if only I’d had anything in my stomach. It was utterly unfair that I was too ill even to vomit.
But I didn’t slide. The strap kept me in place and, seeing the tenderness in each person’s eyes as they encouraged me, I knew somehow that no one would let anything bad happen to me. And if I were ever to stand on my own two feet again, I had to get used to being upright. Feeling gravity’s natural pull could even be the magical kick-start my body needed in order to work again. Sometime later, woozy with the effort and emotion of the day, the significance of what I had achieved began to sink in. For a full ten minutes, I had felt gravity in my feet for the first time since I entered the ambulance in early January. I still couldn’t feel my feet. But weirdly, almost prematurely addictively, I wanted more.
From then, things moved swiftly onward. That afternoon I was brought a bed-cycle, my feet attached as I lay on my back. My physiotherapist patiently started turning the pedals and my legs automatically followed, round and round in circular motions. As I was not moving on my own yet, being moved was the best alternative.
The Blink of an Eye Page 8