The first thing I noticed was sounds. The slow puff and low hiss of a ventilator. The steady beep of a heart monitor machine. Constant whirring pumping sounds. Intermittent high-pitched IV pump alarms. Far away conversations. Sliding doors opening and closing. Rustling paper drapes and sheets. Familiar sounds from my past – the sounds of an ICU.
I tried to open my eyes, but my lids were heavy. I managed to open them a crack, but felt assaulted by the light. I shut my eyes. I let myself drift off to sleep listening to the familiar whirrs and beeps.
<< ◊ >>
I woke up to the sounds again. Beeping, whirring, puffing, pumping. This time I let my eyes stay closed and just listened. The conversations were less far away. I strained to concentrate on what was being said.
“Looks good,” an older man’s voice complimented.
“I think she looks more comfortable already,” a woman said with forced cheeriness.
“How can you tell?” a younger woman asked. “She’s not moving at all, and she can’t say anything.”
“She was grimacing a lot before when she had the ET tube in. Now she looks calm, even though we turned off the propofol.”
The conversation was accompanied by the sounds of paper drapes being crumpled into a trash can, metal tools being gathered up, gloves coming off, hands being washed. I speculated that this little group had just finished a procedure on a patient.
“Do you think she’s going to make it?” asked a young male voice.
“She coded three times last night,” the young woman said.
“That’s not uncommon in high cervical spine injuries – it’s neurogenic shock.” The older man again. “Bradycardia and asystole are pretty common in the first week or so.”
“Is that why she’s on a norephinephrine drip?” asked the young man.
“Yes, that’s part of the reason. Plus she has atropine at the bedside, and cardiology put in a temporary transvenous pacer,” the young woman answered quickly as if in a hurry to leave.
“Do you think she’s going to make it?” the young man asked again.
“If I were her, I wouldn’t want to make it,” the young woman hissed.
“Me neither,” an unfamiliar male voice chimed in.
The older man cut off this line of conversation. “Meredith, do the PDT op note while I go talk to the family now. So, the rest of you – for rounds tomorrow, how about 5 minutes on acute cardiovascular complications of high level cervical spinal cord injuries Josh. Nick, you can do 5 minutes on long term quality of life. Angela, you can do survival – short and long term – look at by age and severity of injury.”
“How high is high level cervical spinal cord?” This was a new female voice.
“High cervical is C1 to C4.”
“Dr. Patel, do you think she’s going to make it?” That must be Josh again.
“Yes, I think she will, but we can’t be sure yet. There are . . . “ I couldn’t catch the last bit as the voices moved out of earshot.
Inside my mind, in a yellow haze, I reconstructed the scene based on the conversation I had just heard. It sounded like an attending neurosurgeon, a resident, an ICU nurse, and some medical students had just done a PDT – a percutaneous dilatational tracheostomy. This procedure creates a hole in the front of the neck directly into a patient’s windpipe. A tube that can be hooked up to a ventilator is inserted into the hole and secured to the outside of the neck. That way the patient can be on a ventilator without having to use an uncomfortable ET tube – an endotracheal tube that goes into the mouth and down the back of the throat. This neurosurgery team had just done a PDT for a very sick woman with a high level cervical spinal cord injury.
I wondered what this woman looked like and how she got injured. I remembered Dr. Morgan saying I was at risk for becoming “a ventilator dependent quadriplegic”. I pictured myself as this woman, this ventilator dependent quadriplegic. I felt warm and tingly with pleasure inside my head as I pictured myself completely paralyzed from the neck down with a brand new tracheostomy hooked up to a ventilator and went to sleep.
<< ◊ >>
Loud, high-pitched rapid beeps jolted me awake, but I kept my eyes closed. I felt movement close to my face, and the high-pitched beeping stopped.
“OK . . . . We’ve got you back on the vent, and you’re all done with suctioning. That wasn’t too bad now, was it?” It was the cheery woman’s voice I heard earlier – the ICU nurse.
I heard the plop of lightweight trash falling into the waste basket. In the background the ever present sounds of the ICU persisted – slow puff and hiss of a ventilator, steady beep of a heart monitor, and whirring pumping sounds. What was I doing in the ICU? I hadn’t worked in an ICU since I was an internal medicine resident almost 2 decades ago. Was I visiting someone? Why did I keep falling asleep? Was I dreaming?
And then I remembered. I remembered where I was before I woke up in the ICU. I had been at the ice rink. I had been skating smooth and fast until I fell and woke up unable to breath with my head pinned to the ice. I remembered the look of terror in my coach Linda’s eyes as everything went black. Now it all made sense. Maybe I was the very sick woman with a high level cervical spinal cord injury who had just gotten a tracheostomy.
Maybe. Maybe? The prospect was too good to be true. I had always felt I belonged in a numb and paralyzed body. The idea of being a quadriplegic, even a ventilator dependent quadriplegic, had always thrilled me inexplicably. I was scared to open my eyes and find out this was all just a dream, to find out that I could actually feel and move my body with ease. I decided to keep my eyes closed while I tested out the possibilities.
I felt air moving over my face. I felt a tickle from hair on my right cheek and forehead. I felt my left ear pressed against a pillow. The left side of my face was tight and ached – maybe from landing on the ice when I fell. My eyes felt a bit crusty and sticky – as if I had slept in too long and had forgotten to wash my face when I got up. A charge went through my head as I thought about possibly never being able to wash my face by myself ever again. My nose tickled. In fact my nose more than tickled – one nostril was definitely irritated – probably an NG tube – a tube from my nose, down the back of my throat, through my esophagus, and into my stomach through which I was getting nourishment. No air moved through my nose – which made sense since the ventilator was moving all of my air for me in and out of the new hole in the front of my neck. With no air moving through my nose, I could not smell. The back of my throat burned and my whole throat was sore. The top of my neck throbbed, but below that I felt nothing. I couldn’t feel the back of my neck, but the back of my head felt warm and comfortable. The top of my head throbbed like the top of my neck. I tried to feel where they had recently cut into my skin to place the tracheostomy, but that was below where my neck throbbing stopped, and I felt nothing.
Keeping my eyelids closed, I moved my eyes in every direction, and they moved normally. I rubbed my lips together and felt and tasted the minty lip balm that coated them. The fresh mint was a nice contrast with the taste inside of my mouth – the metallic taste of blood and a hint of plastic. I swallowed, but not much happened. My tongue moved less than I expected when I swallowed. Nonetheless, I was able to move my tongue all over the inside of my mouth and count all of my teeth. I tried moving my chin up and down. Up only went a little ways. Down was blocked by a firm cushioned surface – likely a cervical collar. I tried turning my head side to side, bending my head side to side, and lifting my head from the pillow. It seemed my efforts were blocked in every direction although I could feel some muscles straining with each attempt.
OK – now for the big test – moving my body below the neck. I started with what should have come naturally – raising my right hand up to my face to flick away the hair that was tickling my cheek and forehead, to feel what was irritating my nose, and to confirm by palpating my neck that I was indeed wearing a cervical collar. In my head I raised my right hand up to my face, but nothing happened. I shrugged my shoulders. Nothing happened. I then went systematically through my body, commanding it to bend each joint, wiggle every finger and toe, lift each arm and leg. Nothing. And nothing at all was coming from my body. No sensation, no pain, no pressure, no tickling, no tingling, no irritation, no hot or cold, no wetness or dryness. Of course my eyes were still closed. It was possible I moved something, but did not know because I could not feel it and could not see it. It was possible, but unlikely.
I had imagined this moment before – my heavy head just floating on a pillow, free from my body. The reality was a little different – rather than just floating, my head was resting on a pillow, anchored to something heavy and immobile. That something was my body below the neck. Far from being free from it, I was forever attached to this numb, motionless body. Before I took the next step and opened my eyes, I took a moment to savor this feeling, this feeling I had longed for for as long as I could remember. It was the feeling of being in my true body, the body that matched mind. My mind exploded with pleasure. I felt aroused and wondered whether my vagina was becoming wet. Then I remembered this was unlikely if the connection between my brain and my body below the neck had truly been severed. Tears welled up in my eyes. Tears of joy. I had the urge to jump up and down. I did not need to suppress that urge, because I was incapable of jumping up and down. That thought made me even happier, and I felt a quiver inside. I could not hold back the smile that spread across my face.
Before opening my eyes, I took stock. Based on my self-examination so far, I was a C2 quadriplegic. I could not breath, I could not feel the back of my neck, and I could not feel where my tracheostomy was. I could feel the back of my head and my ears and I had some ability to move my head. That all indicated C2. I wondered whether the injury was officially complete or incomplete – based on my assessment so far I would have to guess complete. I wondered if I had had surgery to stabilize my neck and what my CT scan and MRI looked like before I had surgery. I wondered how much the degenerative arthritis in my spine had contributed to my injury. I wondered how much feeling and function I might regain. I wondered whether I would ever be able to breathe without a ventilator. I marveled that I was alive and that my brain seemed to be in good enough shape to enjoy the new me. From the soreness on the top of my head and a patchy memory of anything that had happened since I was skating at the rink I inferred I may have bonked my head pretty hard. I was thankful my brain seemed to be working normally.
Grateful to be alive with a functioning brain, my thoughts turned to Andrew and Eva and Daniel and my parents. My family had not asked for this. As much as I was thrilled with my transformed body, as much I was living my dream, I suspected they were shocked, scared, grieving, and traumatized. Maybe they were even angry. Who would want a wife, a mother, a daughter who needed care 24 hours a day? What if I opened my eyes and this was all real and Andrew was there? Would he see joy in my eyes? What would I say? Would he still love me? Could he still love me? Would he be mad at me? Would he wish I had not survived the accident? Suddenly I was terrified to open my eyes. Tears welled up in my eyes again. This time they were tears of fear, sorrow, and guilt – fear, sorrow, and guilt for my family.
Axel Dreams 