Chapter 10 – Warm Blanket Please

Note to readers: Finally a short chapter to get myself back on track after my hiatus. I made myself a promise to post something before this weekend is over, and I am just keeping my promise (at least in my time zone). Thanks for your patience and encouragement – I plan to go back to posting more regularly now.

<< ◊ >>

In the ICU there was a constant stream of events seemingly designed to wake me up: talking and movement over my face, alarms sounding just past my ears, repetitive yes or no questions from everyone from nursing assistants to attending physicians, my head rising and sinking with pulling and tugging on my neck as my body was repositioned, the loud whirring and whooshing of the cough assist machine. In my first days in the hospital I had somehow slept through these events, but now I was waking up more and more frequently.

Each time I awoke I did not need to move or stretch. I did not need to throw off the covers. I did not need to reluctantly haul my body out of bed. I did not need to do any of these things because I could not. Before my injury I woke up and had to do these things, but doing so felt wrong. I had never consciously acknowledged it, but looking back I recognized it. Getting out of bed each morning had been such a struggle because my body was not supposed to be able to get out of bed on its own. I had always attributed it to sleep deprivation or maybe depression or laziness or just not being a morning person. Only now that I knew how it felt to wake up in the right body could I appreciate that my waking shot of lethargy and anxiety was due to this dissonance between the real me and the physical me. Now I woke up feeling whole, my body in harmony with my mind, my being at peace. I could not help but let a smile creep across my face each and every time as I was waking up.

The nurses and respiratory therapists that saw me and woke me up most frequently noticed the pattern first.

“Ooo, ooo, oop . . . here she goes – here comes that smile. She must be about to wake up.”

“Wow – you called it. Just like clockwork – now her eyes are opening.”

“Oh oh – she’s smiling. We must have woken her up.”

Hearing this recognition made me smile even more. When I opened my eyes I was rewarded with smiles coming right back at me along with happy comments.

“What a lovely smile, Diana!”

“You always wake up with such a smile on your face – you must have the most amazing dreams!”

“That smile when you wake up Diana – that smile always brightens my day.”

“Whatever dreams you’re having, I want those dreams too.”

No one grasped that my reality was making me smile, not my dreams.

<< ◊ >>

The joy of waking up in the right body did not protect me from the frustration of having my sleep repeatedly interrupted. After that first week in the hospital when much of my memory was lost forever and sleep always came easily, the next couple weeks were full of exhausted moments chasing sleep in vain. I would stare briefly at a point in front of me, on the line where the ceiling met the wall. I was so tired that my eyelids would fall closed of their own accord, yet sleep would not come. I tried to figure out why.

Was it noise? There was always noise in the ICU, but I would use it. I found patterns to focus on – the drone of my special pressure relief mattress, the slow puff and low hiss of my ventilator, the whirring pumping sounds of the SCD’s rhythmically squeezing my legs, the cheery beeps of my heart monitor. I turned the regular sounds into a lullaby, drowning out the random noise. Sometimes that was all it took and soon I was lost in sleep. Often the ICU lullaby failed, forcing me to search for another obstacle to sleep that might be overcome.

It was some time past midnight after the day I saw my mom for the first time since the accident, and I found myself in just that situation. I nearly convinced myself that I could not sleep due to excitement. I was almost certain this would be the day my tracheostomy cuff would be deflated, and I would get a chance to speak for the first time since my injury. I debated planning exactly what I would say versus being spontaneous. Being spontaneous won out. There was no guarantee I would tolerate having my cuff deflated or be able to speak on my first try. I imagined the disappointment of preparing a statement and then not being able to deliver it. I chose instead to keep my expectations in check, open to joy and gratitude if I was able to talk as I hoped.

As these thoughts chased themselves around in circles in my head I grew increasingly anxious about how tired I would be later today if I could not get any sleep. Being tired had possibly cut short my first visit with speech pathology. I did not want fatigue to interfere again and possibly sabotage my chance to try to talk. What could I do to get to sleep?

I tried to disengage from my anxious thoughts and listen to my body, the small fraction of my body that was still speaking to me. It did not take long for me to notice the tightness in my cheeks and the top of my neck, the quiver in my jaw as if my teeth were on the verge of chattering, the broad empty feeling across my forehead – I was definitely cold. I needed a blanket, but not just any blanket. I needed a warm blanket.

I remembered discovering the magic of warm blankets as a medical student in the emergency room. It was not uncommon to have a patient anxiously waiting to see the doctor or get a test result or hear news about their more severely injured family member and not be able to do anything for them. I could not tell them exactly when their wait would be over or give them any news, but I could offer them a warm blanket. If they said yes I happily rushed off with purpose to the blanket warmer, a glass-fronted cabinet filled with carefully folded white cotton blankets. I came back to the patient and carefully unfurled the blanket and spread it over them, watching as their body relaxed and their forehead wrinkles melted away. Sometimes they even smiled or let out a groan of pleasure. Almost always they thanked me sincerely and tolerated the wait much better. Not uncommonly, they fell asleep.

To get my warm blanket I would need to try out my sip-n-puff call button for real. Other than Andrew softly snoring on the fully horizontal recliner, no one else was in the room. The respiratory therapist had left and my nurse Gina and her colleague had finished hanging a new bag for my norepinephrine drip. I pulled the straw which was lying against my lips into my mouth and sipped and waited. Just as I was about to try again, fearing my signal had not gone through a voice came through the intercom, “We got your message. We’ll be sending someone right in.” I waited some more. Without a clock visible to me I had no way of knowing how long the wait was, but I do know it was long enough that I was considering sipping on my call button again when Gina’s head appeared in my line of site.

“Hi Diana. How can I help you?”

“I need a warm blanket,” I mouthed.

“Come again . . . “

“I need a warm blanket,” I mouthed again and looked down at my covers to give her a clue.

Gina looked at me blankly as I repeated myself a third time. Some people just were not good at reading lips. She tried a different tactic.

“Are you having any pain?”

One long blink for no.

“Are you having trouble sleeping?”

Two quick blinks for yes.

“Would you like medication for sleep?”

One long blink for no. I did not want to risk missing rounds in the morning or being drowsy when I had my opportunity to speak.

“Would you like me to reposition your head?

One long blink for no.

“Do you need me to scratch your nose or your face?”

One long blink.

Gina smiled suddenly. “I just had an idea. I’ll be right back.”

She returned with a communication board. It was a large laminated card divided into 4 sections. The top left said “I am” at the top and had about twelve pictures below with words and pictures showing things like “out of breath” and “in pain”. The top right said “I want” with options pictured below that. The bottom left said “I want to see” with options like doctor, nurse, family, and chaplain below. The bottom right had the alphabet and numbers to use to spell out a message. I smiled as I took it in – great idea, but why had no one used this with me earlier? Of course I had not been awake much, and I had been surprisingly successful with lip reading until now.

“OK, which of the four sections would you like to start with? Blink twice for yes when I point to the section you want. Then I’ll point to the options within that section and you’ll blink twice when I point on the correct option or letter. You got it?” She paused and waited for my yes or no. I blinked twice, and she proceeded. “OK, let’s get started then. I am,” she read as she pointed to the upper left.

I blinked twice figuring I should put my request into context. She pointed to and read out each option in the upper left quadrant in turn. I blinked twice when she landed on the hot/cold picture half-way through. Then I blinked twice when she pointed to the cold half of the picture.

“You’re cold?”

Two quick blinks.

“Do you want a blanket?” I could see her already turning toward a closet in my room to get an extra blanket, but I did not want just any blanket. I mouthed “No”, gave a long single blink, and made a slightly angry face all at the same time, hoping the message would be clear.

“You don’t want a blanket?” I stopped momentarily wondering how to blink in the face of a double negative. Gina saved me with another question. “Do you want to spell it out?”

Two quick blinks.

Gina began pointing to the alphabet in the right lower quadrant, slowly saying the letters in order as she went. Why did the first word I spelled this way have to start with a letter from the end of the alphabet? Maybe it was my imagination, but it seemed Gina became more and more doubtful of our communication skills as she got closer and closer to the end of the alphabet without a response from me. Finally she landed on “W” and I gave two quick blinks, followed by two quick blinks and a smile for good measure.

“W?” she said. Two quick blinks from me.

Next came “A”, which finally confirmed if there remained any doubt, that I understood how to use the communication board. “R” and “M” followed.

“Warm?” she asked. Two quick blinks and a smile from me.

“Next word?” she asked. I confirmed and we started again. “B”, “L”, “A” – that’s all it took and she exclaimed, “Blanket!?!”

I smiled broadly and she asked, “Do you want a warm blanket?” Two enthusiastic quick blinks from me and she was on her way, down the hall, to the blanket warmer I was sure.

She came back with a warm white cotton blanket, just like those of my memories. I was planning how to tell her to pull it up all the way to where I could feel it, but she didn’t need the direction. Her nursing instincts took over as she carefully spread the blanket over my whole body, lifting up my ventilator tubing out of the way and pulling the blanket up on each side of my tracheostomy. She pulled and sculpted the blanket so that it reached my ears and hugged my neck and chin. I beamed up at her as I felt my muscles relax. “Thank you,” I mouthed, filled with relief and gratitude.

“You’re welcome. Do you need anything else?” I gave a long single blink “No” and did not even bother to open my eyes again. I let sleep take me away, dreamily imagining the day I hoped would come soon when I would be able to say “Warm blanket please” loud and clear.

Chapter 9 – Red-handed

Only my mom could make me feel guilty. Guilty of what? Of being happy?

I had been so happy concentrating on a task and learning a new skill as my husband and the speech therapists cheered me on. Since my accident I did not have to do anything. I could not do anything. Finally I had a task to do. Even if that task was just learning how to operate a call button using my mouth and a sip-and-puff switch.  I did not need to feel guilty for the fact that a little thing like that brought me joy.

Nonetheless, just seeing my mom with tears and questions in her eyes suddenly ended my carefree pleasure. I had been caught red-handed – red-handed enjoying life as a ventilator dependent quadriplegic.

This was not how I had expected my first post-injury meeting with my mom to be. I had planned to imagine how I would feel as a mother if Daniel or Eva suffered an injury like mine. I had planned to conjure up those same emotions, to feel that loss and pain. That way I would be able to empathize with my mom and she would see the expected grief and loss reflected back at her when she saw me. There would not have been any of this startling dissonance. There would not have been this sense of guilt.

In addition to guilt, I detected another feeling – fear. Fear that I would be discovered by none other than my own mother. My mom knew me more deeply than anyone else. She had watched me grow up. She had watched me play. Surely she had noticed that my favorite dolls and stuffed toys suffered catastrophic injuries or were born with birth defects. I liked to call my doll’s stroller a “wheelchair”, but my mother corrected me until I stopped doing so. Did she correct me because she thought I was making a vocabulary error or was she uncomfortable that I wanted my toys to need wheelchairs? I remembered her scolding me when I pretended my favorite doll could not move and needed help with everything from the other toys. “Sweetie, it’s not nice to make fun of people who are handicapped. When you play that way you can hurt handicapped people’s feelings.” I imagined handicapped people being like Santa Claus, watching me as I played, invisible and all-seeing. Instead of not bringing me the present I wished for, they would start to cry if I played incorrectly. I stopped playing this way in front of my mother. Even more than avoiding her scolding, I did not want her to think that I wanted to make fun of handicapped people or make them cry. I did still play that way when no one was looking, but I felt guilty.

I felt guilty a lot as a child. Even worse than my private guilt, was the confusing mixture of joy and terror I felt on those rare occasions when I saw disabled people in public, especially people in power wheelchairs who could not use their arms and legs. I could not take my eyes off of them, but I was scared to look into their eyes. I was scared I might see that they recognized me and knew how I played in secret, knew I did this even though it was making fun of them and hurting their feelings. If they looked into my eyes, would they recognize how envious I was, how much I wanted to be like them? I dreaded finding out.

As a teenager I realized my mother was wrong – playing that my dolls were disabled as a child had not hurt the feelings of people with disabilities. Nonetheless my embarrassment and shame grew. As a teenager I suddenly became sexually aroused when innocently happening upon a wheelchair ad in a magazine or seeing a ramp unfurl itself from a wheelchair van followed by the graceful exit of its passenger. These episodes convinced me there was something wrong with how I was wired, something wrong I had to hide. Now that I had attained my desire, the guilt and shame had disappeared. I recognized that my inexplicable wish had been nothing but a yearning to be my true self. All those years I had been a C2 complete quadriplegic in an able body.

Now that I was in my correct disabled body, I was free, free of shame and guilt . . . until my mother’s presence made it all come rushing back. I had nothing to be ashamed of. There was no shame in enjoying life as a ventilator dependent quadriplegic. I was guilty of nothing. My injury was due to a freak accident, not my choice. Wanting my disability, needing my disability did not make me guilty. It just made my catastrophic injury a happy coincidence. Even as I told myself this, I could feel the doubt creeping in. Was my mother having the same doubts? Would my mother blame me for this? Would she forgive me?

<< ◊ >>

“Diana . . . Diana!” Marina had pushed her head right into the center of my field of vision, trying to get my attention. “You missed your last cue. You did not try to signal the call button.” She spoke calmly, but she looked worried. An alarm was going off behind me. Nurse Jackie rushed into my room, silenced the alarm, and headed behind me to the right side of my bed where my IV drips were hanging. I suspect she was checking to make sure everything was running as intended. She must have looked at Marina as if to ask, “What happened?”

“Her face changed all of a sudden. She looked scared and then blank and seemed to be spacing out a bit. The alarm went off, and I noticed her blood pressure was down.” Marina was speaking to nurse Jackie. Then she spoke to me. “What’s wrong? Are you OK?”

I gave two quick blinks for “Yes” and mouthed, “I’m fine.” I managed a smile. “I’m just tired,” I mouthed. I relaxed my face and closed my eyes briefly for emphasis. I truly was tired. I had been awake for more than two hours, the longest time I had been awake since coming to the hospital.

“She says she’s just tired.”

“Well her blood pressure is back to where it has been, and her IV’s running fine.” I still had the arterial line which continuously measured my blood pressure in my left wrist, so all Jackie had to do to check it was look at my monitor. “Looks like you’re doing fine again Diana,” Jackie said brightly, now sounding relaxed. “I’m not sure what dropped your blood pressure, but we’ll keep keeping an eye on things.” She did a cursory neuro examination of me above the neck – shining a light at my pupils and having me follow her finger with my eyes and stick out my tongue.

“Let’s do one better,” suggested Marina. “Let’s have you show your mom and sister how you can signal someone to come to you whenever you need to.” I enthusiastically blinked twice and smiled broadly at Marina, and then turned my eyes to the right to smile at my mom and my sister Natalie. I could feel the sip-and-puff headset on my face and just see it out of the bottom of my eye. I grasped the straw end between my lips and was ready to go.

“OK – your mom and sister are visiting and they have a question for your nurse, but you can’t see her. GO!” Marina gave me the scenario, I quickly sipped on the straw, and in less than a second the ICU clerk was saying, “Got your message Diana,” on the bed intercom. “One second,” said Jessica. Then Jessica, Andrew, Marina, and my sister Natalie cheered for me while I beamed triumphantly.

“Great job, Diana,” Marina began wrapping up the speech pathology visit – perhaps a bit earlier than expected because of my blood pressure drop, the visit from my mom and sister, and the fact that I was getting tired. “One last tip before I go. How can you signal to someone in the room or just outside the door that you need something and they need to look at you? There’s a way you can get attention right now without deflating the trach cuff or using technology.” Marina paused to give my brain a chance to work.

I felt like I had the answer on the tip of my tongue. Had I not seen quadriplegic characters on ventilators do something in movies or TV programs? And then it clicked – “click” and “tip of my tongue.”  I clicked the tip of my tongue on the roof of my mouth as loudly as I could.

“You got it Diana! Not too many patients can think of that trick on their own – great thinking on your part.” I felt proud, but I also knew I probably had an unfair advantage over most patients. I had certainly consumed more quadriplegic-themed media and literature than the average patient.

“OK Diana, I had hoped to do a Fiberoptic Endoscopic swallow evaluation with you today. We can do that right here at the bedside and look at both your swallowing and vocal cords that way. This will give us a good idea of how ready you are to deflate the trach cuff and also if you might possibly skip the PEG tube and go straight to regular swallowing.  Since you’re getting tired and I want to see what you can do at your best, I’ll post-pone that until tomorrow. Depending on how that goes, we’ll also deflate the cuff, have you try talking, and maybe even have you talk with a speaking valve.” I was disappointed that this was being postponed, but I was excited for tomorrow and agreed with Marina – I wanted to do as well as possible on the test.

“Diana’s doing really well!” Marina was now talking to Andrew, Natalie, and my mom. She was undoubtedly sincere, but Marina’s “really well” and my family’s “really well” were likely very different. “I’ve been doing this for a long time, and I used to work at the Spinal Cord Injury Rehab Center, so I’ve met many quadriplegics. I don’t think I’ve ever met a brand new high level quadriplegic that’s as enthusiastic about learning and adapting as Diana, at least this early on – it’s been like barely a week.”

“Six days,” Jessica interjected helpfully.

“You all should be really proud of Diana. Mom you raised an amazing daughter.” Marina looked right at my mom as she said this. I had to admit, it was nice, but a bit awkward to be complimented in this way. Somehow, even though I was already 48 and could have found Marina’s words and praise of my mother patronizing, I did not. I was curious to see how my mom would take this.

“I’m very proud. I’m so proud of Diana. She’s very brave,” my mom stammered, visibly holding back tears. Then she seemed to toughen up. “Maybe she’s so good at learning and adapting because she’s a doctor?”

“I don’t know. I’ve never had a doctor with this kind of injury, but I’ve had plenty of doctors as clients. When faced with a major change like this, everyone is basically human and reacts in a variety of very human ways.”

My mom had suddenly lost any shyness and started asking questions. “Shouldn’t you be trying to get Diana to use her hands so she can learn to move her hands and arms again? Why are you making her use her mouth to signal?” I cringed. Her question almost sounded like criticism, but Marina answered calmly.

“Right now Diana’s hands are not receiving any signals from her brain because of the spinal cord injury. Diana needs a way to signal that works for her now. She tried out a few options, and using her mouth and the sip-and-puff device seems to work great for her.” Marina turned from my mom to me and smiled warmly. “Well, Diana, I’ll let you spend time with your mom and sister. It was great meeting you and your family. I’ll be back tomorrow. Maybe we’ll have you talking tomorrow already!”

“I hope so,” I mouthed.

Marina and Jessica said their goodbyes to everyone, and I turned to my mom and Natalie. It was comforting to see that even on little sleep and obviously distressed, my mom managed to look chic in a carefully chosen outfit in neutral tones with matching handbag and expertly dyed and styled golden brown hair. Natalie was dressed as if she were on her way to Bikram yoga or a run, hair pulled back in a messy pony tail, showing off a face and body easily mistaken for 29 rather than 44. As I looked at my stylish mom and sister I was reminded that I needed a strategy for my mom, but there was no time for something new. I would do with mom and Natalie as I had done with Andrew – focus on being happy to see them and happy to be alive.

I relaxed my face then smiled as big and broadly as I could, looking first straight into my mom’s eyes and then into Natalie’s eyes, and mouthed, “I’m so happy to see you!”

“Oh Diana. Oh my poor, poor dumpling. My poor, poor noodle.” Now that the speech therapists had left and my nurse had stepped out of my room, I watched my mother crumple as all of her defenses melted away. Her face, normally beautiful despite being over 70 years old, was twisted and contorted into what I call her “ugly mom face”. She was bawling and calling me dumpling and noodle like she had not done in at least 30 years. “I just can’t believe it. I just can’t believe it.”

She pulled in so close to me that the soft, drapey cowl neck of her earth-toned summer sweater brushed against my cheek. It felt amazing. I suppressed a smile. The last thing I wanted was for my mom to think I did not take her pain and grief seriously. From her perspective she had lost so much. Her once perfect able-bodied daughter who was a doctor and had perfect children and a perfect husband, her oldest, responsible, worry-free daughter was gone. Of course we both knew I was never perfect, my family was never perfect, and we were never worry-free, but we had been close enough superficially that we were easy to brag about, easy to be thankful for, and easy to use as validation that she was a successful mother and grandmother. Now I, the once perfect daughter, had barely cheated death and lay helpless, motionless, silent, broken, unable even to breathe for myself.

“My poor sweetie. My poor, poor sweetie!“ She still called me “sweetie” as an adult, and “poor, poor sweetie” is something she would say if I had a fender bender or a leaky sink drain. Even a relatively minor mishap for any of her children elicited lamentation from my mother, so more dramatic lamentation now was to be expected. “Why did this happen to you? Why?” My mother kept sobbing as she came in closer. Too close to read my lips. Too close for me to try mouthing words. She kissed me on both cheeks, then laid her head beside mine, her right cheek wet with tears pushing against my right cheek. My head sank as the bed sank – she must have laid her chest on top of me in her efforts to gather me up in a hug. In my mind I lifted my arms, threw them around her, and squeezed as tightly as I could to emphatically return the hug. In reality nothing moved.

I knew she could not hear me because I could not speak. I knew she could not see me because her eyes were buried in my pillow. Nonetheless I mouthed words to her. “I love you mom . . . Oh mom . . . I love you so much . . . . I’m so sorry . . . . It’s OK . . .  I will be OK . . . I’m so happy to be alive . . . . I’m so happy you’re here with me . . .” My words were sincere, but I have no idea whether anyone saw them and was able to read my lips. I know my mother did not see them. I wanted to place my hand on her shoulder and caress her comfortingly. I was so thankful when Natalie stepped in and seemed to do it for me. She let my mom linger there on my pillow, stroking her shoulders, and then helped my mom up from what must have been an awkward position.

It was clear my mom loved me no matter what. I had to let her know that she had not lost me. I was still her daughter, but not her perfect daughter. I was still me, but more me than I ever had been before. Even without the ability to move or feel below the neck, I could love her and make her proud. I realized that I too was sobbing, tears of relief or simply empathy with my mom, or were they tears acknowledging what I too had lost? I felt the snot pooling in my nose, running down the back of my throat, and dripping from my nostrils. I had no way to suck the mucous back in or blow it out. My tears were trickling back from my eyes, some of them running into my ears, an uncomfortable combination of wet and ticklish. Before I could come up with the right words to mouth to convey what I needed, I felt soft tissues mopping up my tears and wiping away the mucous. It was my mom, anticipating just what I wanted. “Thanks mom!” I mouthed and smiled in appreciation. I let myself close my eyes and savor the sensation of her careful, caring touch. I almost forgot my fear that she would uncover my secret. Almost.

Chapter 8 – Sip-and-Puff

“Hi, Diana Laska?” a new face presented itself in my line of sight on the left side of my bed. She was my age with a cloud of tight, shiny auburn curls and green eyes. Behind her was a younger woman nervously grasping an open notebook. “I’m Marina Thomas, speech-language pathologist.” Speech Pathology I thought – swallowing, talking on the vent, and getting a call button – we had a lot of work to do together. She held out her right hand as if to shake my hand, and for a split second I anticipated that awkward moment I would most likely have the rest of my life when the person I was meeting realized I was incapable of a handshake. The awkward moment melted away as she purposefully laid her right hand on my unmoving, unfeeling left hand, clearly having planned to do this all along. Her eyes met mine with a twinkle and a smile. I smiled back wholeheartedly, recognizing how comfortable she seemed to be with me and my paralysis.

“Is it OK if Jessica joins us?” Marina stepped back to allow the younger woman to come forward. “She’s a speech-language pathology student, and this is her first day rounding with me in the ICU.” I gave two quick blinks, mouthed the word “Yes”, and offered her my most welcoming smile.

“Hi, I’m Jessica. Nice to meet you.” She extended her right hand and gingerly laid it on my left hand, copying the gesture of her professor. I looked down at her hand on mine and felt a shiver of satisfaction in my head, wondering how warm or cold, heavy or light it may have felt if I could feel it. This was probably the first time she had ever touched the numb and paralyzed hand of a quadriplegic.

“Nice to meet you,” I mouthed and looked back up at her face. She was finally smiling and relaxing a bit. I was impressed that smiles and tactful touch had the power to break the tension, even when not everyone involved could feel the touch.

“And you must be Diana’s . . . “ Marina addressed Andrew who was finally eating lunch on the recliner. He had a weird fear that if he ate too close to me, crumbs would get into my ventilator. Or maybe he just said that and actually was worried I would be upset by him eating so close to me since I myself could not eat.

“Husband . . .” he jumped up, hurriedly wiping his mouth and hands on a napkin. “I’m Andrew, Diana’s husband.” He shook hands with Marina and Jessica in turn.

“So good to meet you,” Marina said sincerely. “I know this situation must be very tough for you. You must have so many questions. Feel free to ask us any questions while we’re working with Diana. And let us know if there is any information you think we should know about Diana that might not be in her chart.”

“Any questions”, “any information” – personally I thought the parameters she was giving Andrew were a bit broad, but her invitation seemed to do the trick. My recently uncharacteristically bashful husband started to talk.

“You said you were ‘speech’ something? Is that right? Does that mean you can make it so Diana can talk again?”

“That’s right, I’m a speech-language pathologist.” I chuckled inwardly at how she kept repeating the full, official name of her profession. Such a professor! “One of the things we will work on with Diana is learning how to talk on the ventilator when she is ready to do that.”

“What do you mean by ‘when she is ready to do that’?” I could hear the disappointment in his voice even though I could not see him. I had exactly the same question – I had hoped I was ready today! Andrew kept talking, “She wants to talk to her doctors and discuss all the details about her injury and prognosis. She needs to talk as soon as possible.” My eyes were wet with pride. Andrew had done a very good job of lip reading and remembered what I had told him that morning.

“Well she has to be able to move her vocal cords and the muscles she needs for talking, plus she needs to have air flowing over her vocal cords. To get air flowing over her vocal cords we need to let down the cuff of her tracheostomy. The part of her tracheostomy that is inside of her windpipe has a cuff around it. Currently that cuff is inflated, blocking her windpipe so no air can pass it and go up her throat, through the vocal cords and into her mouth and nose. All her air is going in and coming out of the tracheostomy. If her breathing is strong and stable enough we can deflate the cuff to allow air to come up through the vocal cords and out of her mouth.” As Marina explained this to Andrew she pulled a picture from Jessica’s notebook which illustrated the difference in air flow when the cuff is up versus when the cuff is down:

Andrew moved to get a good look at the diagrams and just happened to be in my line of sight again. I wanted to see too. Even though I knew the difference between a cuffed and an un-cuffed trach, it was nice to have a visual reminder. I caught his eye and mouthed, “Let me see.”

“Diana wants to see too,” Andrew said.

Marina handed the diagram to Jessica who positioned it so that I could see.

“Diana, also, you had your tracheostomy placed over 72 hours ago, so from a surgical healing standpoint you are ready to try deflating the cuff. We just need to investigate the other factors.” Marina paused as if considering whether to continue her lecture. She turned to Jessica who was very much included in her intended audience.

“Another factor is swallowing. Dysphagia or difficulty swallowing is very common after this kind of injury and surgery. When a patient cannot swallow well, there is a risk that secretions and food will go down the windpipe instead of being swallowed as intended. That is called aspiration and can lead to pneumonia, which can be life-threatening. Any secretions or food in the mouth getting below the vocal cords is aspiration. An inflated cuff cannot stop aspiration, but it can block aspiration from getting below the cuff down lower into the windpipe. However, an inflated cuff makes it harder to swallow correctly and easier to aspirate, so it’s a bit of a Catch-22. When we deflate the cuff, we have to do so cautiously and for short periods at first because it takes some getting used to for the patient, and it takes lots of careful monitoring and suctioning to prevent aspiration. The time the cuff is deflated increases over time. Eventually most long-term ventilator dependent patients keep the cuff deflated all day or even change to a trach without a cuff 24/7.”

“Long-term ventilator dependent patients” – the phrase kept repeating itself in my head. Did Marina assume that I was one of those patients? Had Andrew heard this and assumed that? I looked at Andrew, but he just looked like he was concentrating on all the new information, pleased someone was talking to him and pleased to be learning something. If I could have I would have breathed a sigh of relief.

“But first things first!” Marina brightly interrupted her own lecture. “We need to get you a call button.” I smiled in agreement. I did not want to find myself alone in my room with no way to summon help ever again.

<< ◊ >>

A collection of gadgets from the ICU Speech Path closet was poured out on top of the blanket covering my midsection. When I directed my gaze downwards as far as I could I saw a variety of cords, boxes, headsets, and tubes. The white plastic straws attached to headsets and mountable flex arms particularly piqued my interest – sip-and-puff switches.

After having my facial and head strength and capabilities tested and trying out a variety of call button options, I had decided on the sip-and-puff headset. Initially I thought I might have to go for the simplest option – the pillow box which would have sat on my pillow next to my head, requiring me to slightly move my head to hit it. I did not like that option since it would not be in my line of sight, and I would need to hit it to feel it and know that it was there. It had to be calibrated to alarm at the minimum amount of contact since my head motion was so limited due to the cervical collar and my weakness. I could just imagine hitting it on accident more than on purpose.

There were many reasons I wanted to use the sip-and-puff. It had additional features that could be used to control the television and music. The sip-and-puff call switch could be on a lightweight headset that I could wear comfortably all the time. That way I did not have to worry about being moved out of range from my call button or having my call button moved out of the way to accomplish some task and not moved back. More importantly it would be good practice for using sip-and-puff controls for a power wheelchair in the future. But the strongest reason was far from practical – for years I had hoped to one day pretend to be a high level quad for at least a few hours and control a power wheelchair using a sip-and-puff mechanism. I was certain that just trying it out would give me an unequalled visceral thrill. Of course I had never even managed to sit in a power wheelchair while I was able bodied, let alone drive one or control one like a real high level quad would. I could never have imagined that the first time I used a sip-and-puff switch it would be for real, because I really needed it.

I had feared I would be unable to do it with a cuffed tracheostomy tube. If no air was coming up through my mouth, how could I puff? And how could I sip without my lungs generating negative pressure? Marina showed me how it was possible to created enough sip and puff force to activate the alarm using just the muscles of my cheeks, mouth, and lips. It was not easy and this also had to be calibrated to alarm at a very low level, but to my amazement, I was able to get it to work. To keep it simple it was initially set to alarm for either a sip or a puff – whatever I was able to generate in the moment. When I became more skilled with it they could reset it for me to use in multiple modes, including to operate the television.

Marina made me practice using the sip-and-puff mechanism while she calibrated the call button system. She had the ICU clerk at the nursing station and Jessica and Andrew at my bedside serve as my cheering section. I suspected that the average first time sip-and-puff user was not as eager as I was and actually needed a cheering section. Even if I did not need it, I certainly enjoyed it. Marina or Andrew would say a realistic or ridiculous scenario – you need help making a phone call, there’s a snake in your bed, or you need someone to pick your nose. Then they would say “Go”, and Jessica would time how long it took until the ICU clerk said, “Got your message Diana,” signaling that I had successfully activated the call switch. Then Jessica would say how much time I took, and Jessica and Andrew would acknowledge my accomplishment by shouting out a celebratory phrase – “Way to go!”, “Whew Hoo!”, “Good job Diana!” At first it took me between 5 and 10 seconds to wrap my lips around the straw and coordinate my lower facial and oral muscles to generate a sip or a puff. With a bit of practice I was able to get it down to around one second consistently.

As I practiced and brought my times down the cheers became more and more genuine, and my smile grew broader and bigger. Not only was this fun, but I was actually mastering a new skill I would need in my new life as a C2 complete quadriplegic, my new life in my perfect body. It truly was a visceral thrill, better than any pretending could ever have been.

I was so concentrated on the task at hand, the cues from Andrew and Marina, the cheers, and the sheer joy, that I did not notice them enter my room. I heard movement on the right side of my bed, so I took my eyes off of Jessica, Marina, and Andrew and looked to my right. My mom and my sister stood observing the scene, moist eyes wide with curiosity and confusion.

Chapter 7 – 48 Year Old Female

Note to readers: This week’s chapter is particularly long. I’m not sure whether I’ll be able to follow it up with another chapter in just a week, but I’ll try. I’m sure it will be a shorter chapter if I succeed. Do let me know if the medical terms and jargon are too confusing and anything needs to be clarified. Thanks for reading!

<< ◊ >>

I woke up and saw no one. This was a first as far as I could recall – the first time waking up alone since my accident. I immediately thought of rounds. My mind raced: Were they coming soon? Had I missed them? I wished I knew the time. At least then I would be better able to guess whether or not I had missed rounds. Where was Andrew? Hadn’t he promised he’d make sure I got to listen in on rounds? I needed to ask someone about rounds. I needed to ask now! I needed to be part of rounds. I was a doctor. I wanted to be part of my team of doctors. I needed to be sure I had not missed them. No one was looking at me trying to figure out what I needed, and there was no way for me to get anyone’s attention. Where was my call button? And if I had one, how could I press it? If my arms and hands could move I would be rummaging through the sheets in search of a button. If I could speak I would raise my voice. I guess when I was sleeping and in and out of consciousness they had not thought to get me a call button.

I tried to shout, “Excuse me. I need some help please!” But as expected, there was no sound. My mouth felt like a towel fresh from the dryer. I also needed a nurse or CNA to moisten the inside of my mouth. For the first time I felt trapped in my new situation. All it took was being awake without a way to communicate.

I tried to calm myself by listening to the slow steady puff and hiss of the ventilator. I let my eyes dash around the room as far as they could go in every direction in case I had missed a clock on the wall the last few times I had explored my surroundings with my eyes. No clock. I thought of soothing myself with slow, deep breaths, but quickly remembered I had no control over my breathing.

I remembered that my physical body, with all of its limitations, finally matched the image I had of my body in my mind. I was living in my authentic body. That thought calmed me more than anything else. Often when I had felt stressed in the past, I would imagine myself numb and paralyzed from the neck down, tilted back slightly in my power wheelchair, immobile hands resting in molded arm trays. As I pictured myself this way I would feel enveloped in a cloud of soft cotton, lifted securely above all my problems. I was reluctant to use this reliable trick to achieve serenity every time I felt stressed because I felt it must be sick and abnormal to find relief by imagining myself severely disabled. And of course, I never shared this secret with anyone, especially when they asked me, “How do you stay so calm?” Now I no longer had to secretly imagine my true body, my true self – I simply had to be my true self. I let the cotton cloud envelope me and raise me up. I relished the feeling of letting myself sink into its soft security.

While I was floating on this cloud, Andrew came in and brought me back down to earth.

“Rounds?!?” I mouthed at him angrily.

“They haven’t come by you yet for rounds, but they’re in the ICU rounding on other patients right now. I don’t know. You might be next. I had to step out to go to the bathroom.”

“I was so worried I had missed rounds,” I mouthed.

“No, no – I wouldn’t let that happen.”

“My mouth is dry. I need some moisture in my mouth.” I opened my mouth and showed him my dry lips and tongue, hoping that would make him understand.

It worked. Soon my nurse of the day was in with a packet of mouth swabs and a smile, showing Andrew how to moisten my mouth and leaving the rest of the packet at my bedside, ready for him to use as needed. The minty wetness felt great, but I wished I could gulp down a tall glass of tap water.

“You’re up next. Dr. Patel, Dr. Papandrea, and the team are heading over here right now,” my nurse announced.

<< ◊ >>

The team assembled just outside the partially opened sliding door to my room – Dr. Patel, Dr. Papandrea, another resident, and three medical students. I could tell by their postures they were about to get started, but thankfully, my nurse darted out of my room to interrupt them.

“Dr. Patel, don’t forget. Dr. Laska would like to listen to rounds too. She requested you and the team come into her room when you round on her so she can hear everything.”

“Thanks for the reminder Jackie!” Dr. Patel said genuinely. The rest of the team did not seem so sure as they filed into my room behind him. Andrew stood up and moved the chair he had been sitting in at my bedside out of the way. He then shuffled awkwardly trying to decide where he should stand to avoid getting in the way.

Dr. Patel, the attending physician, looked Andrew in the eyes and reached out to shake his hand. “You can join us around her bed if you like,” he said in a warm, welcoming tone. I recognized his voice as the older man’s voice I had heard when the team was finishing after putting in my tracheostomy. But he did not look like an “older man”. He appeared to be around the same age as me and Andrew. I guess I had gotten “older” since I had last done rounds in the ICU.

Andrew relaxed after the hand shake and took up the spot nearest my head on the left side of my bed. Dr. Patel had the next spot.

The residents and medical students filed into the room joining Andrew, nurse Jackie, and Dr. Patel in forming a “U” around my bed. I hoped I looked OK. I was sure the plum lip gloss from the night before was long gone. Normally I would have run my fingers through my hair to fluff it up and give it some sort of shape. That was not an option now.

I felt inexplicably nervous. I was not the one presenting a patient – that was Dr. Papandrea. I was also not subject to “pimping” – the oral quizzing of residents and students by the attending. But I did notice about half of the eyes faced in my direction. The other half of the white-coat-wearing young faces was focused on their phones and notes. I relaxed my face muscles, then smiled warmly, and looked at each pair of eyes that was looking towards me in turn. It was my attempt to say hello and welcome without the use of my voice. I was a little surprised to find the male neurosurgery resident avoided looking directly into my eyes, even when I was smiling at him. One of the medical students did look at me directly, and, although she was a bit fuzzy since I was without glasses or contacts, I think she had tears in her eyes. It hit me that seeing a fellow physician living their nightmare scenario might be uncomfortable. It brought home that being a doctor did not make you immune to bad luck and catastrophic injury.

I remembered doing a physical as part of a patient’s intake into substance abuse rehab. Her substance of choice was alcohol, but her main problem was bipolar disorder. She was a mother like me and close to my age at the time. It was heartbreaking to hear how her children were in foster care because of her mental health and substance abuse issues. Her husband had actually died from substance abuse related issues. Then as we reviewed the rest of her medical history and current medications it became clear that she was a savvy healthcare professional. When she told me she was an internal medicine physician I felt like I had been punched in the gut. I had to stop what I was doing and consciously stop myself from shaking. I finished her history and physical, but I am pretty sure she had noticed my reaction. I tried to keep up the natural empathy I had felt, but a wall had gone up to protect me from the realization that I too was not immune to mental illness or substance abuse or losing my children just because I was a doctor. She had been living my nightmare just as I was now living what for many fellow physicians was their nightmare.

“Dr. Laska,” the attending physician interrupted my thoughts, “I’m not sure whether we’ve officially met while you were fully awake yet. I’m Dr. Patel, your attending neurosurgeon.”

He paused and looked towards me. I looked back, smiled, tried to nod, and gave two quick blinks. I felt like he wanted to give me a chance to speak, but of course, I could not speak.

“Dr. Papandrea will go ahead and present what’s happened with you in the past 24 hours and then we’ll discuss together with you and give you a chance to communicate additional questions and needs. If it’s OK with you we might also share some exam findings with the students.”

I gave two quick blinks as if to say, “Go ahead”, but I was wondering just how much I would be able to communicate my needs in this setting.

I turned my eyes all the way to the right so that I could just see Dr. Papandrea. She looked up from a folded computer printout covered in black ink scribbles and started her presentation in a steady, almost bored voice:

Diana Laska is a 48 year old female with ASIA A C2 quadriplegia post C3 and C4 Burst Fractures and Type II Dens Fracture

Hearing it like that, in front of the gathered witnesses, somehow made it official: “You are now a C2 quadriplegic.”

Hospital day six, post-injury day five, and post-op day five ACDF with autologous bone graft and odontoid screw fixation.

ACDF. ACDF. ACDF. I quickly wracked my brain to decipher this acronym. I settled on Anterior Cervical Decompression and Fusion. So I had had surgery right away – and thankfully they were able to stabilize my spine enough to avoid putting me into a halo brace.

No events overnight. No further episodes of asystole or extreme bradycardia since permanent pacemaker placed day before yesterday.

My guess had been correct – I did get a permanent pacemaker the day after my last code.

 

Vitals

Blood Pressure – 85 to 108 over 48 to 70

MAP – 68 to 84

Heart rate – 60, paced

Vent settings – Assist Control, rate of 12, tidal volume 900cc, FiO2 21%

O2 sats 97 to 100 percent

Tmax – 36.5

CVP – 10

Wow – my vitals were all boringly normal, well low normal on the blood pressure and heart rate. Of course to get those “normal” vital signs I had to use a ventilator, a pacemaker, and a constant IV infusion of medication to keep my blood pressure up.

 

Neuro

Alert, appropriate. She’s waking up now and staying awake. Communicating with eye blinking and mouthing words.

Sensory and motor neuro exam is stable – still C2 motor and sensory level with nothing lower.

I thought back to this morning’s round of touches I could not feel and commands I could not follow. My mother’s hopes notwithstanding, now was too soon to expect improvement, even if I had an injury with a high likelihood of substantial improvement, which I did not.

No normal DTR’s detectable. She has a delayed plantar reflex bilaterally, and she also has the bulbocavernosis and anal wink.

Surgical wound dressing is clean, dry, and intact under cervical collar. Surgical wound drain only had 18cc in the past 24 hours. Surgical wound dressing at bone graft harvest site also clean, dry, and intact.

Neuro medications

She is on a fentanyl drip at 50 micrograms per hour

No wonder I was so tired! I wondered whether I really needed that.

Lorazepam 1 to 2 milligrams IV Q one hour PRN – has not had any in the past 24 hours

No wonder I had been so sleepy and could not remember most of the last 6 days. I may have gotten quite a bit of lorazepam earlier in my stay.

Neuro plan

DC wound drain

Continue PT daily for range of motion

This plan was pretty thin. I wondered whether there was a treatment I should be getting for the actual spinal cord injury. Was there not a stem cell or neuroprotection trial I could be a part of?

Referral to inpatient rehab has been done and they are following her chart remotely with plan to transfer to rehab once she no longer needs ICU care

Inpatient rehab! I liked the sound of that and smiled. The faster I could get out of the ICU, the better. I guessed the main thing keeping me in the ICU was my need for medication to keep my blood pressure up.

 

Respiratory

Lungs are clear bilaterally on exam

Tracheostomy site is clean and dry

Chest x-ray clear without atelectasis or infiltrate

No change in vent settings past 24 hours. No patient triggered breaths.

ABG: pH 7.45, pCO2 34, pO2 98, BiCarb 21

She is getting albuterol neb and mechanical insufflation-exsufflation with the cough assist machine every three to four hours plus chest physiotherapy. She has not needed suctioning in the past 24 hours.

Wow – I was doing really well from a respiratory standpoint – not even needing suctioning! I hoped we could keep this up and I could escape the ICU without getting pneumonia.

Other Respiratory Meds

Peridex oral rinse 15mL swish & suction Q6H

Fomoterol 20mcg nebulized Q12H

Respiratory Assessment and Plan

Respiratory status has been stable and patient is now 72 hours post tracheostomy. She would like to speak.

Consult speech for Passy Muir valve, deflating trach cuff – I guess they’ll need to coordinate their consult with respiratory?

The prospect of being able to talk again brought another enthusiastic smile to my face.

Otherwise continue current care including neb and cough assist machine Q 2 to 3 hours

 

Cardiovascular

Regular rate and rhythm. No JVP elevation. No edema.

Pacemaker site dressing clean, dry, and intact.

Still on Norepinephrine drip 0.15 micrograms per kilogram per minute which is down from 0.25 micrograms per kilogram per minute prior to getting the permanent pacemaker day before yesterday. We have not been able to go any lower on the dose in the last 24 hours.

So this was it – this is what would keep me in the ICU and out of rehab – I still needed a steady infusion of norephinephrine into my bloodstream to keep my blood pressure up at a healthy level. If my blood pressure got too low, that would be bad for healing any little bit of spinal cord that was still salvageable. In addition, low blood pressure could be dangerous for all of my organs, especially the most precious part of me, my brain. Based on what I knew about neurogenic shock, this situation was temporary, but it could take weeks to resolve.

She has not needed any PRN atropine since getting the permanent pacer.

Cardiology is still following.

 

GI

No GI complaints. One formed BM in last 24 hours. Patient is complaining of irritation from NG tube.

Tube feeding at 50cc per hour. No elevated gastric residual volumes.

Abdomen soft with positive bowel sounds.

Tolerating tube feeds, but noting nasal and throat irritation. Have Speech also assess swallowing and consider placing PEG tube if safe swallowing unlikely in the next 30 days.

The NG tube in my nose and down the back of my throat was really irritating – considering I could only feel in a small fraction of my body, I wanted that small fraction to feel good. I was glad they were taking my concern seriously.

Continue famotidine GI prophylaxis.

 

Renal/Urinary

I’s and O’s: 2,350 in and 2,030 out

Foley in place day six

I wondered how long the Foley catheter would stay in my bladder.

Chem 7:

Sodium 138

Potasium 3.9

Chloride 108

BiCarb 21

BUN 13

Creatinine 0.8

Glucose 121

My labs were all boringly normal. I smiled.

 

 Heme/ID

Afebrile. Not on antibiotics currently.

On enoxaparin DVT prophylaxis.

CBC:

White blood count 7.8

Hemoglobin 11.3

Hematocrit 22%

Platelets 453

So far I had no infections and no blood clots. If I could have I would have knocked on wood.

There was a brief discussion of all of my lines – of note – the PICC line (which had been in my right arm) was out and I now had a big subclavian vein central line in my chest that was put in at the same time as the permanent pacemaker, specifically positioned to not interfere with it. My temporary pacemaker had been inserted in my arm through my PICC – a bit of an experiment, an unsuccessful experiment. The trick with temporary transvenous pacers was to keep them from moving around and losing their effective placement. Using a peripherally inserted line raised the chance for movement and losing the correct position. In my case, since I could not move my arm, the risk was thought to be minimal. Nonetheless, my temporary pacemaker failed, and I had to get a permanent one, one which was currently working like a charm.

As I listened intently to this discussion, I felt my mind overflowing with information, churning with all the details I had just heard. The discussion stopped abruptly, before I had a chance to calm the flood of facts, and all eyes turned on me as Dr. Patel asked, “Anything to add Dr. Laska?”

The silence grew uncomfortably long as I reluctantly let go of all the new knowledge and struggled to reach back and remember the questions I wanted to bring up. “They’ll wait for you”, I told myself, not sure if I believed that. Then it hit me:

“I need a call button,” I mouthed.

“Please repeat that,” Dr. Patel said encouragingly. I could see him trying to model patience in front of the noticeably less patient Dr. Papandrea.

“I need a call button,” I repeated. I looked to the bedrails and the sheets – to the locations where one might expect a call button to be.

“You need a . . . ?” Dr. Patel attempted to repeat my request.

“I need a call button,” I mouthed again, again looking at the sheets and the bedrails. I felt like I was playing charades without the use of my body or playing Pictionary without the ability to draw.

“I need a call button!” exclaimed the young woman with long, curly dark brown hair, the medical student who had had tears in her eyes earlier.

I blinked twice emphatically and smiled broadly at her. She beamed in triumph as Dr. Patel shot her an appreciative glance.

“Yes of course,” Dr. Patel said. “We will have Speech Pathology set you up with a call button you can operate. You’ll be keeping Speech busy today.”

I smiled as I wracked my brain for the next question. I needed to communicate while I had the chance.

“Do I need so much fentanyl?” I mouthed. “Can we go down on the fentanyl?” I rolled my eyes towards my right shoulder in what I guessed was the direction of my IV drips, including the fentanyl. My expectation was that decreasing the fentanyl would make me less sleepy. One benefit of a mostly numb body, at least for now, was less pain. Hopefully I could take advantage of that and still be comfortable with less pain medication and less sedation.

“Is it about fentanyl?” asked Dr. Patel.

I blinked twice and mouthed “Yes”.

“Do you need more fentanyl?” he asked.

One long blink, and then I mouthed, “No, I want less fentanyl. I want to be less sedated.”

“No – you want less fentanyl?”

Two quick blinks. “Yes.”

“OK – let’s go down on the fentanyl drip by 10 each day and see how you do. Meredith – make sure she has PRN pain med orders too. Let us know if you’re getting more pain and need to go back up again, OK?” Dr. Patel looked back at me for that last part.

I gave two quick blinks of understanding, instinctively tried to nod in agreement, but was blocked by the cervical collar, and smiled.

“OK now – Dr. Papandrea – I understand she has a pretty good delayed plantar response. Let’s have the medical students elicit plantar reflexes on her and the next patient with normal plantar reflexes so they can make the comparison.”

And just like that, all eyes were off of my face and onto my feet. As the three medical students and Dr. Patel moved down to my feet, my joy at having my requests heard turned to frustration. I had more requests and more questions, but I guess two was my limit.

Silently I watched as Dr. Patel grasped one of my ankles with his left hand and stroked the bottom outside of my foot with the handle of his reflex hammer. I could not quite see what he was doing, and of course, I could not feel what he was doing. I just knew because during my career I had stroked the bottoms of countless patients’ feet to check for a Babinski sign, the abnormal fanning out and extension of the toes. In all of that time I had never seen a delayed plantar reflex. My physician’s curiosity took over in spite of my simmering irritation, and I turned my full attention over to Dr. Patel and his students so that I too could witness a delayed plantar reflex.

“So with a normal reflex you would have seen flexion – the toes curving downwards and inwards – by now,” Dr. Patel was saying. “So far there is no response. I’m going to stroke her foot again – harder this time. Still there is no response. Now, I’m going to stroke even harder – you really need to exaggerate to get the response. OK, OK – you see that – it didn’t happen right away. I was actually done stroking before she started flexing and her toes stayed flexed and just very gradually uncurled themselves.” He said that last part slowly for emphasis. “When we try this on the next patient with a normal reflex, or if you try this on yourselves, you’ll see that normally it’s an instantaneous response and you quickly go back to neutral. Let’s see the other side.”

Dr. Patel repeated the demonstration on my right foot with everyone’s full attention – “Just like the left foot – a delayed plantar response,” he announced triumphantly. “OK, now everyone give it a try. Try a gentle stroke first and then stroke harder and harder until you get a response.” As the students readied their reflex hammers and took their turns stroking the bottoms of my feet, Dr. Patel kept talking.

“It’s actually pretty rare to find DPR’s that are so clear and easy to demonstrate, so you’re lucky. It’s a transient abnormal reflex after spinal cord injury that you don’t always see. If it persists for several days like in her case, it’s an indicator of poor prognosis. So a DPR that lasts for two or more days correlates strongly with not regaining ambulation.” It was jarring to hear Dr. Patel say this so cheerily right in front of my husband.

I stole a glance at Andrew to see if he had been listening, and he was looking right at me, eyes wide with concern. I tried to maintain a neutral expression, but in truth, I was a bit annoyed with my husband – hadn’t he figured out by now that I had a “poor prognosis”? There were plenty of other indications of my “poor prognosis” besides the DPR. What did he even think “poor prognosis” meant? I honestly did not know and did not want to try to find out without my ability to speak. I turned my eyes away from his troubled, loving face and looked at a scene I found more enjoyable and comforting – three eager medical students in their short white coats earnestly experimenting with my flaccid feet. Seeing their curiosity and sense of accomplishment as they successfully elicited the abnormal responses made me happy. Seeing them forcefully manipulate my feet without me feeling anything made me even happier. My feet and legs felt as connected to me as the bed or the sheets, and that realization made my brain tingle with pleasure.

Chapter 6 – Reflexes

I am quite sure doctors spoke to me earlier in my hospitalization, but the first interactions I can actually remember were not until the sixth day. A young doctor woke me up. “Good morning Diana!” Based on her voice I thought she may have been the resident who was part of the team that put in my tracheostomy. I tried not to jump to that conclusion recalling how that resident had said she would prefer not to “make it” if she were me. She was about my height – five foot three – and about twenty years younger than me. Her dark brown hair was efficiently pulled back in a pony tail. She moved quickly and confidently and looked at me directly.

“My name is Dr. Meredith Papandrea. How are you feeling this morning?”

I wanted to say, “I’m not” as in “I’m not feeling.” Instead I mouthed the generic “Fine”.

“Are you having any pain?”

I did one long blink for “No”, even though this was not entirely accurate. If I could have spoken out loud I may have explained that I still had pain in the back of my throat and irritation in my nose that I knew was likely due to the NG tube. Plus the parts of my neck I could feel were sore and throbbing dully. But there were no new pains or pains for which I wanted to take medication or do anything.

“Any nausea or vomiting?”

One long blink. Did I even have enough muscles to vomit? I knew I felt nauseated before the last code, but that was days ago, so that did not count.

“Fever or chills?”

One long blink. I wanted to say I was a bit cold, but how could I have chills? With almost my whole body paralyzed, I could not shiver.

“Palpitations?”

One long blink. How would I know? Could I still feel my heart jumping in my chest? Maybe I would learn to feel my heartbeat some other way?

“Lightheadedness?”

One long blink. In addition to feeling lightheaded before the code, I felt lightheaded whenever I was moved, always temporarily, into a position with my head up more than a foot or two above the rest of my body. I assumed that was not what she meant.

“Shortness of breath?”

One long blink. How would I know? My breath was supplied by machine, the same number of breaths, the same volume of air every minute. The monitors and blood tests must be saying it was sufficient. I could not feel if the breaths were shallow or deep. I could not feel air going in and out of my nose as all the air was moving through the hole in my neck. I could not move to exert myself and get short of breath.

And on she went, asking questions for which I faked an answer. I could not feel most of my body. I could not move myself to see most of my body. And I had been sleeping or sedated most of the time for days. How could she expect informed answers from me? I guessed she had to ask these questions for billing purposes, and that she asked these questions on autopilot. I doubted she imagined the mental gymnastics going on inside of my head.

Why had I felt compelled to feed her meaningless answers as quickly and easily as possible? Was I afraid to admit that I did not know my new body yet? I vowed that I would learn to know my body again as well as I possibly could given my current limitations. I knew I would have to learn to read new signals, new sensations, new clues.

After the chain of questions came the physical exam which eventually included another series of long single blinks from me. First she shone a light in my eyes and mouth. Then she listened to my heart, lungs, and abdomen – just from the front with me lying on my back. She pushed and peeked at various things on my body that I could not quite see.  She concluded with the neurological exam. First she brushed my cheek with a cotton swab on both sides of my face.

“Can you feel this?” Two quick blinks. “Can you feel this?” Two quick blinks.

Then she touched my earlobes – two quick blinks for each side. She touched the back of my head on both sides – two quick blinks for each side.

Then she touched me on each side of my tracheostomy. One long blink for “No” for each side. And so it went for the rest of my body. Shoulders – no.  Upper lateral arms – no. Lower lateral arms – no. Thumbs – no. Middle fingers – no. Pinkies – no. “Can you feel this? Can you feel this? Can you feel this?” She went faster and faster through all the dermatomes. I could not follow her cotton swab with my eyes everywhere she touched. I concentrated on trying to feel something when she spoke and then doing one long blink immediately thereafter. We kept up a good rhythm. A rhythm I would have broken if I had felt anything, but I did not. Then she went back to the dermatome where I felt something – C2 which is the back of my head and my earlobes. Here she brought out a dull needle and alternated with the swab and the sharp tool to confirm that I could distinguish between light touch and pin prick. So I had normal sensation at the C2 level and nothing below.

After the sensation exam was complete the motor exam commenced.

“OK Diana. I’m not really going to test your neck muscles since your neck is immobilized in the collar and you just had cervical spine surgery, but you will do a lot of work on your neck muscles in rehab.” Rehab – I savored the word in my mind and briefly imagined myself without the cervical collar, struggling to regain the ability to hold my head up on my own, with the assistance of a patient physical therapist. The thought of learning to use my new body to its full, though limited, potential sent a warm tingle through the small part of my body I could still feel.

“I’m going to start testing at your shoulders and go down. I want you to try your hardest to follow my instructions. Even if we don’t see any movement, I might be able to feel it, so try your hardest.”

“Shrug your shoulders. Harder, harder, OK.” Her hands seemed to be on my shoulders although I could not feel or see them. Then she took my right arm.

“Bend your right arm at the elbow. OK try that again. Bend your right arm at the elbow.” She held my arm up at odd angles to allow me to bend my arms without gravity getting in the way. She had her hands on my muscles, feeling for any hint of movement.

“Straighten your right arm. OK, again. Straighten your right arm.”

Then the left side. Then back to the right side. Then all the way down my body until she got to my toes. I could not see everything I tried to do, but the elements I could see showed no obvious movement on my part. Perhaps she could feel some?

Finally she took out a reflex hammer and quickly performed a perfunctory examination of my upper and lower extremity reflexes. Again, I could not see everything, but what I could see showed no reflexes, until she got to my feet. This was not surprising since I had only been injured for nearly a week and was still experiencing some spinal shock. She spent more time with my feet and ankles, and I think I saw some movement in my feet and toes.

“Could you feel any voluntary movement?” I mouthed when she was done.

She had me repeat my question and then she answered bluntly, “No.”

“Have there been any changes?”

“Well, some of your reflexes are starting to come back. Based on the nursing charting you’ve gotten some of the sacral ones back like anal wink. You also have a DPR – delayed plantar reflex.” That was why she had paid such close attention to my feet. “You should start getting back the normal DTR’s soon. Unfortunately, your exam for voluntary movement and sensation has been very stable. Of course this is the most alert you’ve been for any exam we’ve been able to document. You were falling asleep during your other exams.”

“This is the first exam I can remember,” I mouthed.

“I’m not surprised.” She softened a little and veered off script.  “I understand you’re an internal medicine doc. After that code the other day Cara told me you diagnosed yourself as a C2 quadriplegic before Cara even told you. Is that true?”

“Yes,” I mouthed and gave two quick blinks.

She paused, opened her mouth as if about to ask a question, and stopped herself. She went back into efficient mode.

“I’ll be back with the team for rounds in a couple hours. I’ve spared you the medical students on the team. Maybe I’ll give you one when you’ve got a bit more energy and you’re talking. Any issues you want the team to discuss on rounds?”

“I want to talk – when can I start?” I mouthed.

“You want to talk?”

Two quick blinks.

“I want to eat or I want a PEG tube if it’s indicated. I don’t want the NG tube.” I mouthed. She had me repeat myself.

“You want to eat and you don’t want the NG tube and you’re OK with a PEG tube instead if you need it?”

Two quick blinks.

“Sounds like you need speech consult for swallow eval and for talking with the trach.” She turned and walked out, looking over her shoulder as she went, “Bye for now.”

“I have more questions!” I mouthed, but she was gone.

<< ◊ >>

After my eyes followed Dr. Papandrea out, I took a good look around the room. All my attention had been focused on the young doctor and trying to feel and move as commanded. I had not noticed Andrew lying awake on the recliner. I wondered how long he had been awake and whether he had watched and listened to my visit with the doctor. He got up from the recliner and moved towards me as soon as our eyes met.

Without a word he put one hand on each side of my face, gave it a gentle squeeze and lowered his lips onto mine for a quick kiss.

“Good morning Diana.”

“Good morning,” I mouthed. “Did you sleep OK?”

“I guess so. Not as good as at home. Daniel and your mom stayed the night before last, so I had a chance to sleep at home. I slept for fourteen hours straight!”

I smiled whole-heartedly. “I’m happy you got some sleep. This must be really hard on you.”

Andrew was quiet. I guess he did not want to acknowledge that all of this was very hard on him. He grimaced and asked, “When are they going to talk to us? When will the doctors talk to you? There are so many people coming and going out of your room, but they don’t tell us much.”

Usually in a family medical crisis I, as the only physician in the family, was the go to person to get the information from the professionals and share it with the rest of the family. Without me in that role I could see Andrew was a bit lost. This was not surprising given the complexity of our situation and the forces bearing down on the health care team which all worked against constant, timely family communication. I remembered being a busy resident and hoping to find the patient alone, even if they could not speak much. Facing a concerned family member full of questions without easy answers and full of information I would need to document cost me time I did not have. Eventually communication would happen, but better to avoid it when possible in favor of efficiency. Even as I felt myself slipping into the familiar role of apologist for the healthcare system, I had to admit it stung to be at the receiving end of these mixed-up priorities.

“Yes, it’s so frustrating,” I mouthed. I smiled inside thinking the frustrating thing for me was not the paralysis, not being on a ventilator, not being dependent on others for all of my personal care – no, the frustrating thing was the lack of communication.

“I can’t take seeing you suffer like this. I need to know, when is this going to end? What can we expect? When will you be better? When will you talk? When will you walk? When will you move your arms?”

I answered my husband’s questions in my head:

When will it end? – Never.
What to expect? – C2 quadriplegia and likely ventilator dependence.
When better? – It depends on what you mean by “better”.
When talk? – Hopefully soon.
When walk? – Never.
When move my arms? – Never.

I asked myself, Should I tell him I was not suffering? Should I let him know that I knew the answers to his questions? Did I really know the answers to his questions? The medical truth was I did not. I needed more information and more time to be sure. With spinal cord injury there is always room for hope and surprises. My body’s truth was the deafening silence from below my neck telling me that I had arrived. I was finally the me I was always meant to be.

I planned to tell him that I was not suffering. Instead I mouthed, “I will get better.” I knew “better” for Andrew meant more than talking, swallowing, maybe holding up and turning my head, maybe even breathing without the ventilator. “I will get better,” I mouthed again. More than the truth, Andrew needed hope and needed to know that I had hope. “I will get better,” I mouthed a third time, my eyes locked on to Andrew’s deep, wet, brown eyes. My eyes filled with tears – tears because I was lying, tears because I hoped I was lying.

“You will get better. I know you. I know you will get better.” Andrew smiled through his tears, squeezed my face harder than he had earlier that morning, and kissed me deeper and longer.

<< ◊ >>

I had given Andrew a bit of hope, but we still needed information. I had a plan to get more information, and, as usual, I needed help, Andrew’s help.

I had to repeat this next bit of conversation several times and in several versions before Andrew got the gist of it by reading my lips. “I might be talking soon. I want to have a good meeting with the main doctor, the attending neurosurgeon, as soon as I can talk. And I want to hear rounds today and every day. Make sure I’m awake for that!”

Yes, even though I wanted to have a meeting with the attending neurosurgeon as soon as possible, it would be unlikely to satisfy my many questions if I was still unable to speak. I could make better use of an official family meeting with the doctors and team if my voice could be heard. Until then, I could get information from rounds, and, when I had more energy, reading my chart. During rounds all the neurosurgeons in charge of my care, possibly along with medical students, would see me and review my case as a whole team. The neurosurgeons would include the attending (the boss and professor), one or more residents (doctors getting on the job training in their specialty), and possibly one or more interns (first year residents). Normally during rounds Dr. Papandrea, the neurosurgery resident who had examined me earlier, would present how I had done in the past 24 hours along with all the new information available during that time to the team. Then the attending and team would enter my room. The attending would have a brief chat with me and perhaps show the team something interesting on my physical examination. He might even allow me to ask a question. Then the team would leave, discuss my case, maybe make a few learning points, and determine my plan for the day. Because I was requesting to listen in on rounds I hoped they would come into my room earlier and leave later than customary, allowing me to listen to the resident’s presentation at the beginning and the discussion at the end.

Now that Andrew had some hope and had a task – making it clear I wanted to listen in on rounds and making sure I was awake for rounds – he was temporarily satisfied. I let myself fall asleep.

Chapter 5 – Family Time

It was after a big family dinner. The table had been cleared of dinner dishes, serving platters, and salad bowls. Napkins and half-filled wine glasses were still on the festive table cloth. Daniel brought in a stack of desert plates topped precariously with too many forks. The nieces and nephews were called back to the table. Eva brought in an impressive coffee cream torte to much applause and began cutting it and doling out the slices. Everyone complemented her. Andrew fed me a bite and I had to agree. “Eva has become quite the cook and an amazing baker,” I contributed enthusiastically to the compliments. I didn’t have to add “since my accident.” That part was understood by everyone present. Sitting in my black power wheelchair I looked around the table at my family and was filled with warmth and gratitude.

And then I woke up. It was all a dream. I had these dreams often – dreams of me enjoying life with my family while paralyzed from the neck down and in a power wheelchair. I would wake up disappointed to discover I could easily throw off the covers and jump out of bed.

This time it was different. I woke up with heavy eyes and kept them closed. I could not feel any covers to throw off of me. I could not jump up and out of bed. In fact, I could not move or feel anything below my neck. Instead of waking up disappointed with my moving, feeling, able body I was waking up grateful for my numb and paralyzed body. I was in my authentic body. I finally was the real me.

I kept my eyes closed and tried to orient myself. The last thing I remembered was talking to Andrew and feeling nauseated and sensing that I was falling. I listened to the sounds around me for clues. 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. I was still in the ICU. I was still hooked up to a ventilator. I was waking up after who knows how long. I was having who knows what done to me. I was in my perfect body, but my perfect body was so vulnerable, so out of my control.

I took the leap and opened my eyes, blinking repeatedly as I grew accustomed to the light. Facing me as expected was the wall with the sink, counter, cabinets, and door, all in shades of beige, gray, and light wood. The white board still had fuzzy writing on it, but now it was surrounded by a colorful explosion of what I assumed were get well cards. There were also several bunches of Mylar get well balloons arranged by the white board and in the far corner of the room by the window. By twisting my eyes all the way to the left I could just make out two large banners on the wall to the left of the window. The text was so large and bright that even without my contact lenses I could read “Team Diana” and “Edelweiss Ice Skating Club” on one of them and “Dr. Laska” in a sea of scrawled signatures and notes on the other one. Of course the skating club knew about my accident, but good to confirm that my work was aware and supporting me as well. The old me would have been embarrassed with this attention, but the new me marveled and felt gratitude.

In front of the window, sitting side by side on the extended recliner, both with eyes locked on their respective phone screens, sat Eva and Daniel.

I felt like a spy staring at them, oblivious to my gaze. Eva’s brown hair was up in a ponytail and she was wearing a navy uniform skirt (unusual for her), white polo shirt, and navy school sweatshirt – she must have come straight from school. Daniel’s hair had grown into an unmanageable cloud in the short time he’d been away from home. He looked tired in his jeans and grey rumpled hoody. Despite sitting just inches from each other they were not fighting or complaining about each other. That in itself was a special occasion. I so wanted to stop spying and simply capture their attention, but I could not make a sound or wave to them. I just had to wait and keep my eyes wide open in hopes they would notice I was awake.

“Mom’s awake!” cried Eva. She jumped up and rushed towards me before I could even crack a smile. She plopped her hands on my shoulders (I think) and planted a kiss on my forehead. By the time she pulled her face back far enough to look at me, I was beaming.

“Oh Eva, I’m so happy to see you!” I said, but I made no sound.

Daniel had gotten up to stand beside Eva and looked at me cautiously.

“Oh Daniel, I’m so glad you came! I’m so sorry you had to leave your very first semester of college. I hope you can get back soon.” I mouthed.

“Oh mom . . . . .” eyes wet and bewildered, Daniel seemed unsure of what to say next.

“Don’t worry about saying anything. I’m just glad you’re here!” I mouthed enthusiastically. “There’s nothing wrong or right to say in a situation like this.”

Eva had pulled up a chair and sat with her head at my level. She boldly stuck her right arm underneath the ventilator tubing and rested it on my bed, landing her right hand in my hair. She began gently stroking and rubbing my scalp.

“They say you can only feel your face and your head and a little bit of your neck. Is that really true?” asked Eva.

“Yes” I mouthed and blinked quickly twice.

“Oh yeah – two quick blinks means yes and one long blink means no.”

I smiled and blinked two quick blinks.

“There’s a sign right above you that says that.”

I smiled some more.

“I can’t wait until you can talk again. They say you might be able to soon. If you’re strong enough they’ll change something with your trach so that you can talk. There’s so much to talk about!”

“Go ahead and talk,” I mouth.

“Of course – I can still talk . . . . . Let’s see . . . .”

“Did you put up all the decorations?” I asked.

“Say it again mom – I didn’t catch that.”

“Did you put up all the decorations?”

“Grandma and I put up the decorations. You’ve gotten even more cards and stuff since we put everything up. You were on the news! You even made the newspaper. You . . . .” Eva wanted to say more, but Daniel, still standing quietly behind her, squeezed Eva’s shoulder which made her stop. She nimbly started up again. “You’re getting stuff from patients and friends and people at church and people from a long time ago I don’t even know. Everyone is praying for you and thinking about you. It’s pretty crazy really . . . .”

I couldn’t suppress my smiles. I knew the old me would be mortified, but the new me was willing to share and happy to be getting the attention. After all, I needed all the prayer and all the good healing thoughts I could get.

“Guess what?” Eva said excitedly.

“What?” I mouthed.

“I made a Caring Bridge site for you!”

“What a great idea – I’m proud of you!” I mouthed honestly. Caring Bridge is a great service that allows people to create websites to share their “health journeys” with friends and family. The sites become efficient ways to communicate updates and give support and encouragement during a medical crisis.

“I also made Daniel make you a GoFundMe page,” Eva said while Daniel grimaced. I sympathized with Daniel’s concern, but this was also a great idea given how expensive it is to live with a spinal cord injury and how not everything is covered by insurance.

“That’s a great idea too – I’m proud of you too!” I hoped Daniel understood me. I hoped both of my children understood how proud I was of both of them. I really wanted to see the websites, read them, edit them, add to them, but I already felt my energy fading.

“Let’s take a picture for the websites,” I said.

“Come again mom.”

“Take a picture of me for the websites,” I repeated.

“Are you sure mom?” Eva asked. She was as surprised as I was. Although I often took pictures, I rarely appeared in them. And posting pictures of myself online was an even rarer occurrence.

I blinked twice and mouthed, “Take a picture and let me see it. I haven’t seen myself yet.” I hadn’t seen a picture of myself or a reflection of myself in a mirror since my accident. The motives behind getting a picture were twofold – I was curious and I knew others would be curious too. Eva grabbed her phone and began snapping. I smiled and tried to look confident and happy. In my mind I took on a whole series of poses, but in reality I could not change my pose – only my face was under my control.

Eva scrolled through the pictures with a serious expression, deleting some as she went.

“Let me see,” I mouthed.

“Are you sure mom?” Eva asked.

“I’m not sure that’s such a good idea . . . .” said Daniel looking worried.

“I want to see. Don’t worry – I know what to expect,” I mouthed.

Reluctantly Eva held her phone in front of me and flipped through the pictures that had made her initial cut. I was unrecognizable in the photos taken from further away – just a few specs of skin, my face and forearms, in a sea of blue, white, and beige. As expected I had on a rigid cervical collar with ventilator tubing connected to my tracheostomy spilling out from the center of my collar. Unexpectedly there was another tube coming out of my cervical collar, a pale pink tube connected to an oval pink globe that rested on my right shoulder – some sort of surgical drain. A jungle of tubes, catheters, and leads emerged from my chest, which was hidden by my hospital gown, and connected to IV pumps and monitors on either side of me. The NG tube left my nose, joined the jungle, and then emerged connected to a pump and a large bag of beige sludge. My main monitor screen was filled with at least six colorful rows of data. My ventilator monitor was less busy. You needed a lot of imagination to see that I was smiling. The main impression was that I looked conscious, but very sick.

The close up photos lacked context, but did show me clearly smiling. My hair was barely noticeable, but I could tell it was greasy, stringy, and plastered to my scalp. I wished I had gotten a hair cut before this happened. My left cheek was yellow and purple with bruising and flecked with small, dark scabs. The rest of my face was pale, including my pale, dry, smiling lips. The close ups showed my cervical collar, trach, ventilator tubing, surgical drain with clear bloody fluid, and NG tube, but not much else. I was relieved to see I still looked young for my age despite my predicament – more like early forties than late forties.

“Can you fix my hair and put on some lip gloss?” I asked Eva. I repeated myself and pointed to my lips with my tongue in the hopes she would understand. She understood. She tried to fluff up my hair a bit and dug some plum-colored lip gloss out of her backpack. She applied the lip gloss, rubbed my cheeks, snapped a close up, and showed me her phone.

“Better!” I smiled. ”Let’s get a picture with the three of us.” A woman had come in to hang an IV for me. I assumed she was my nurse, but I did not recognize her. “Have her take the picture.” I moved my eyes in her direction, hoping to make my intention clearer.

“Hi Janet,” Eva said. “Mom’s awake and wants us to take a picture together. Could you please take our picture?”

Janet looked a bit suspicious, but she obliged. She had Daniel get on my right side and had Eva stay on my left side. She took a couple pictures with them standing up, and then had them crouch in closer to me and took some close ups. She and Eva looked through the results, and then it was my turn. It was bittersweet to see myself so vulnerable but with the visible support of my children. The pride and warmth I felt brought tears of joy to my eyes. I was also pleased that I looked better than in the first photos. I was attractive and my smile seemed confident and genuine, especially in contrast with Daniel and Eva’s forced smiles. I was moved to see that both Daniel and Eva were touching me on my arm and shoulder. A shudder of pleasure and a twinge of sadness went through me simultaneously as I noticed this and realized I had not felt their touch at all.

<< ◊ >>

“Have you been taking your medication?” Eva had taken a seat to my left again and had her right hand back on my scalp. Daniel was on a trip to the hospital cafeteria to get food for both of them. “Have you been taking your medication?” I asked again.

“Y-yes . . . . I forget if I’m here in the mornings, but I’m taking it otherwise. Dad’s even reminding me!” I smiled as that was really quite a step forward for Andrew who was ambivalent at best about Eva “depending” on anti-depressant medication.

“How are you doing?”

Eva knew what I meant by that and answered accordingly. “OK I guess. Honestly, I’m a little bit in shock still about all of this. There’s so much to do and find out about, I’m kind of overwhelmed in a good way. I’m too busy to think about dying and wanting to be dead. I haven’t even thought about killing myself since I heard about your accident.” Eva looked at me with awkward silence.

“I’m so relieved you’re doing OK. This whole situation is difficult for everyone, but I’m pleased and proud you are handling it so well. You need to keep taking care of yourself. Take your medication. Go to your counseling appointments. You still need all of that. Keeping yourself healthy is the very best way to help me.” I mouthed all of this as sincerely, slowly, and clearly as I could in the hopes that Eva would be able to read my lips.

“Oh mom – I’ll take care of myself – if I remember. It’s so weird. Even though this terrible thing happened to you I’m not any sadder than I was before. I mean I’m sad about you, but I’m also relieved that you survived. And I think I’m less sad about myself somehow. I feel kind of guilty I don’t feel worse than I do.”

“Don’t worry, I’m sure you’ll have plenty of opportunities to feel worse in the future,” I only half-joked. Knowing my daughter, I was afraid that once the novelty of all of this wore off, the stresses of dealing with a dependent, paralyzed mother would overwhelm her (even if, hopefully, she was not providing any of my care.) Thinking of stress, I thought of my own mother.

“How’s Grandma?” How did we end up taking pictures before I even asked about my Mom? “How’s Grandma?” I mouthed again.

“Grandma’s surviving I guess.” Eva started slowly, but then her words gushed out like a waterfall. “I hope she’s sleeping. She was here with you for almost 48 hours straight. She only left your side to go to the bathroom. She kept squeezing your hand and trying to get you to squeeze back – even though she told the nurse she understood you could not move or feel your hands. She didn’t act like she understood. We had to make her go home and get some rest. She’ll be so mad she missed you waking up. She was so disappointed that you had another episode when your heart stopped and you went unconscious before we got here night before last. And then you were out of it until now. She was so scared. She was so mad about the pacemaker. She couldn’t understand why you had a temporary one that wasn’t working right instead of getting a permanent one right away. She felt like your doctors made a mistake and that mistake made it impossible for her to talk to you. She was so mad and so worried about you. She thinks it must be somebody’s fault that you can’t move or breathe or feel anything. She thinks if they did a good job you should be getting some movement or feeling back by now. I bet the doctors and nurses are happy she finally left.”

“Sounds like Grandma!” I mouthed. But I did feel bad for her and for my family. I was just finding out I had had another code – another episode in which my heart stopped and they had to administer emergency medication and maybe shock me. And this time I had been unconscious for a long time afterwards. I wondered if that had been intentional. I assumed I must have gotten a permanent pacemaker early yesterday and been kept sedated for some time after that. Or maybe I was just unconscious naturally? Had I suffered some brain damage due to low oxygen during the code? How frightening this all must be for Andrew and my Mom and the kids . . .

Once again I felt how vulnerable I was. Hopefully the pacemaker would prevent further episodes of extreme bradycardia or asystole. However, as a sick person on a ventilator in an ICU, especially a person who could not feel or move most of her body, I was at risk for many complications including infections, blood clots, and bed sores. In addition, the more I needed medical interventions, the more likely I would suffer from a medical error or from side effects of a medication or treatment. Without the ability to speak or move, and likely drifting in and out of sleep and consciousness, it would be difficult to stand up for myself. Every day in the hospital was a day of danger. Despite this fearful thought, I fell into an exhausted sleep.

Chapter 4 – Reunion

I woke up to a new view. I was lying on my right side with 3 people working to position me, keep all of my tubes in order, and take care of business on my backside. Lying on my right side I faced the wall of glass with the sliding door. The curtain had been pulled to block most of the view, giving me a good idea of what was happening on my back side.

“Congratulations, you’ve just had your first good BM since being in the hospital,” Cara said, noticing I was awake. I smiled. I knew how important, and how complicated, having regular bowel movements was for a person with spinal cord injury. “We also just had to give you atropine to keep your pressure and heart rate up – even with that transvenous pacer in.” Neurogenic shock is common in the first weeks after high cervical spinal cord injuries and causes inappropriately low blood pressure and heart rate that often gets even worse with some kind of stimulation – like suctioning or changing position or having a bowel movement. That could be another reason there were so many people around to help with my bowel movement. I could tell from busy noises behind me that I was being cleaned up, but I did not feel anything, and the smell was minimal. There were some advantages to having air enter and exit my body through the hole in my neck instead of through my nose.

“Once we’re done Andrew will be back in. He’s anxious to see you and talk to you now that you’re awake.”

I tensed up inside, even though I could not feel what I would normally consider my insides. I tried to think of what to say, and then remembered that I could not make sounds. I wondered how good Andrew would be at lip reading. I considered what expression I should make. I wanted him to be reassured and know I was comfortable, but I did not want him to think that I looked inappropriately happy. But I was happy – happy to see him. I could look happy and make it all about him. He did not need to know that I was also happy about not being able to feel or move my body. I decided to relax my face and my expression, as if I were trying to meditate and was consciously relaxing each muscle, except now instead of worrying about all the muscles in my body, I only had to worry about the muscles above my neck.

While lying on my right side, I could not see what was being done to me and my bed. I could not move my head to get a better view or feel anything, except when they took hold of my whole body and I could feel the tug at my neck or when they shook or bumped the bed and I could feel the motion of the bed with my head.

Without warning I was gently rolled onto my back, giving me a view of my body once again. I watched in awe as each limp limb was picked up and expertly positioned on pillows resulting in an arrangement slightly different from the one I had seen the first time I opened my eyes. The gloved hands carrying my arms and legs were neither warm nor cold, neither firm nor gentle – based on what I was feeling, they may as well have been moving furniture in the room. I was able to see that I did have SCD’s on from my ankles to my upper thighs and I did have a Foley catheter connected to a urine bag just as I had speculated. I was relieved to note the urine was clear and pale yellow. I was surprised to see a large wound dressing on my left hip – perhaps I had had a bone graft as part of my neck surgery and this was the harvest site. Before the view of my body was obstructed by blankets, I tried moving again and looked intently for any movement, twitch, or quiver. I saw nothing.

I consciously relaxed my face, rather than grinning or looking ecstatic which would have come more naturally. I felt like I was in a dream, or rather, that my reality had become a dream, my dream. To have a totally numb, totally motionless body was very rare, even for a quadriplegic. Most retained some function and more sensation below the neck. But my injury was high enough and complete enough that I had nothing. I was not even able to breathe. Having a totally numb, totally motionless body was how I had pictured the true me. That was constant. Needing a ventilator – that detail came and went. Honestly, I would prefer to be free of all the logistical hassles and medical risks that depending on a ventilator represented, but being on a ventilator was a small price to pay for the privilege of living in the body I was meant to live in. And of course, I was only a few days into my injury. I was likely to have some improvement. Would there be enough to breathe on my own? I hoped so. Honestly, I would welcome any functional improvement I got as a precious gift, a tool to make my difficult life easier.

Even though I had not moved a muscle, it seemed the BM and repositioning had tired me out. As I lay contented, marveling at my unique good fortune, I had to fight to keep my eyes open. I wanted to stay awake for Andrew . . . .

<< ◊ >>

I kept my eyes to the right, focused on the glass sliding door. I relaxed each muscle of my face and prepared for Andrew’s arrival. I recognized his shadow’s stride through the partially drawn beige curtain. But he stopped before entering my room. Cara was charting next to the partially open sliding door. I strained to hear their conversation.

“Can I go in now?”

“Sure, she’s expecting you.”

“How is she doing?”

“She seems comfortable. We had to give her more medication for low heart rate and blood pressure when we were helping her have a BM.”

“Like last night?”

“Not as bad. It’s better with the temporary pacemaker she has now.”

“Has she moved anything since I left?”

“No.”

The conversation stalled.

“I don’t know what to say to her.”

“The important thing is that you are here for her. Let her know how you feel about her. Let her know how the kids are doing. Let her know her mom and Eva are coming later. She’s tired. She won’t be able to stay awake for too long, so you won’t have to say too much.”

“What if I cry in front of her?”

“That’s OK. You can try to cry before you go in to get it out of your system, if that works for you. But don’t worry, if you cry she’ll know how much she means to you. Just try not to cry all the time . . . oh, and remember – she can’t make sound yet when she talks, so you’ll need to read lips.”

It was quiet for a while. I imagined him standing frozen, blocking out the sounds and action around him, focused on his next step – coming in to see me awake for the first time since my accident.

I closed my eyes for a long blink, preparing to intently watch him enter. I focused on relaxing all of the muscles in my face and then opened my eyes.

He entered the room slowly, not quite sure where to look. He seemed to avoid looking at my body and all the tubes and monitors. This left only my face for him to look at, but he seemed not quite ready to look into my eyes. His head was facing towards my face as he walked in my direction, but his gaze was far away.

I locked my eyes on his eyes, waiting for the moment his eyes stopped focusing on the abstract distance and instead focused on me. As soon as that happened my face relaxed and broke into an unrestrained smile. I was flooded with warmth and had the urge to throw up my arms and pull him in close to me in an exuberant hug. Instead, all I had to welcome him and calm his fears was my smile.

His face softened as he came to the edge of the bed, bent over me slightly, and started to reach his hands towards me. Then he stopped, as if unsure of where to put his hands. Was he scared to touch me? His eyes were wet. He tried to smile.

“Touch me,” I said. Of course no sound came out.

He continued to look confused.

I waited to give him a chance to pay attention. “Touch me.” He remained frozen, suspended over me. “It’s OK, you can touch me.”

“Diana . . . .” He came in closer and kissed me on the lips, still unsure of where to put his hands.

“I love you,” I said after the kiss when he looked at me again.

“I love you Diana.” I was unsure whether or not he had read my lips and understood, or was just saying this spontaneously. At least his sentiments matched exactly what I was feeling.

“I love you Andrew!”

“Oh . . . I love you too Diana.”

I was relieved that he had understood me. I relaxed more and let myself speak freely. “I’m sorry Andrew. I’m so sorry.”

“Don’t be sorry. Why would you say you’re sorry? It’s not your fault. Don’t be sorry. . . . We can do this.” He looked awkwardly at his hands and looked around the room. He kept his eyes on mine as he walked around to the other side of the bed to grab a chair. He brought the chair back to the right side of the bed and sat down, twisting his body in it to face me. He put his left hand on my right forearm, well away from the PICC line. He put his right hand on my face, softly stroking my left cheek.

“Thank you,” I said without thinking. I really was thankful. His hand gently caressing my bruised cheek was the second non-utilitarian touch I could recall since my accident. (The first was Cara’s “hug” and peck on the forehead.) This small physical connection to my husband was just what I needed. And he had thoughtfully chosen one of the few places on my body that he could easily reach and that I could feel. But my husband hated it when I said thank you to him. I half expected him to scold me with “I’m your husband – you don’t need to say thank you!” But he was quiet.

I looked at his big left hand on my right arm and tried to feel its weight and warmth. I thrilled that I could feel nothing. Andrew caught my looking at his hand on my arm, and I guiltily turned my gaze back to his face. I imagined he was asking himself whether I could feel his hand, but he did not open his mouth to ask me. I had to give him some idea of how I really felt.

“I’m happy.”

No reaction, but now he was looking closely at my mouth.

“I’m happy to be alive.” It was so true I had to say it again. “I’m so happy I’m alive!”

His face relaxed and he sounded honest and relieved. “Diana – I’m so happy you’re alive too!” He leaned over again and kissed me carefully on the lips. I closed my eyes briefly and savored the sensation.

When I opened my eyes there was a new presence in the room – someone was at my left facing Andrew who was at my right. A stranger had just barged in on our first one on one time since my accident. In the small amount of time I had been awake since being in the hospital I had discovered there was a steady stream of people coming in and out of my room to work on my body.

“Hi Diana, I’m Jarrod. I’m a respiratory therapist. I’ll be doing a breathing treatment and using cough-assist to clear your lungs of mucous.”

“Hi, I’m Andrew, Diana’s husband.”

“Hi, nice to meet you.” He busied himself setting up an albuterol nebulizer in line with my ventilator tubing. “Don’t mind me. Just doin’ an albuterol breathing treatment. Then Cara will come in, and we’ll do the cough assist together. Until then, just pretend I’m not here.” I could just barely make out his hands fiddling with clear plastic and his tall muscular frame if I turned my eyes all the way to the left.

I focused my eyes back on Andrew. “How is Eva doing? Has she seen me like this?”

“Huh . . . . Could you say that again?”

“How is Eva doing?” Obviously this would not be easy for her, but I half hoped it might help. Maybe this crisis would jolt her out of her current patterns – missing school, fighting with Dad, staying in bed. She was less depressed than she had been seven months ago when she took all the pills she could find in our bathroom and was hospitalized for almost a month in an adolescent psychiatric ward. Andrew and I were disappointed that she was not “cured” when she came home. She still wanted to die. She still required vigilance.  I had only been sleeping through the night for the last three months. Before that I set my alarm to go off every two hours so I could check on her and make sure she had not hung herself or run away. She was better, but clearly still depressed.

“She’s hanging in there. She’s worried about you. She wanted to be here, but I made her go to school today. She saw you after your surgery the day you got hurt and last night. She’s watching lots of YouTube videos about . . .” he paused, reluctant to continue. “She’ll be here tonight. Your mom is flying in tonight. She’ll rent a car at the airport, drive home to get Eva, and then come here. That’ll give me a chance to go home for a few hours. I’ll come back later to spend the night with you.”

I was looking forward to seeing Eva. If she succeeded in reading my lips I was sure I would be able to reassure her. She was good at figuring out how I really felt. If we could communicate, she would know I was doing OK. I was also encouraged by her curiosity – apparently she was researching my injury on the internet.

I was ready to see Eva, but I was not ready to see my mom. I avoided letting my mind go there for now.

“How about Daniel?” I mouthed.

“Daniel?”

I gave my husband an attempt at a nod plus two quick blinks. I wondered whether my husband would understand two quick blinks meant yes.

“He’s coming tomorrow. He says you’re strong – you’ll be fine. I don’t think he understands how serious this is.”

Daniel had been away at college for less than a month. I felt guilty about him leaving when his freshman year had barely begun just to see me. I was about to say something to that effect, but then I realized that regardless of how comfortable I felt with the situation, I had had a catastrophic life changing and life threatening injury. Of course he had to see me.

“It will be great to see him,” I said enthusiastically. I was about to ask about my brother and sister and in-laws when we were interrupted by Cara and Jarrod.

“Hi Diana and Andrew. Jarrod and I will be clearing mucous out of your lungs with the cough assist machine. When your chest muscles are paralyzed you can’t cough and clear secretions like you would naturally, so we need to help with suctioning through the trach or other ways. Cough assist is more like a real cough and does a more thorough job of clearing secretions than suctioning.” Cara’s narration was upbeat and soothing at the same time. Cara and Jarrod stood at my left and began pumping extra oxygen into my trach, taking off the regular vent circuit, hooking up the cough machine, pushing in extra air, pulling out air, pushing on my chest. I heard sucking and whooshing sounds. I saw a flurry of different tubing being popped on and off my trach. Despite all the activity, I didn’t feel anything in my chest.

Suddenly I felt nauseated. Even though I was lying in bed, I felt like I was falling. I was lightheaded too and the nausea became even stronger. Then blackness . . . . .

Chapter 3 – Seeing is Believing

I relaxed my eyelids and the muscles of my face, summoning up the courage to open my eyes. Reflexively I tried to take slow, deep breaths as I would have done before the accident to calm and center myself before doing something challenging. Of course, nothing happened. The ventilator kept breathing for me at the same slow, steady rate. I had to smile in appreciation of the joke my body played on me. Loosened up a bit by this, I was almost ready to open my eyes. Would I open my eyes and see my bedroom? Would I jump out of bed disappointed, realizing all of this had just been an exciting dream? Or would I open my eyes to see an ICU patient room? If so, would I have to look my family in the eyes? Could I make them understand that we could enjoy this new adventure together? Either way – either I would be happy or my family would be happy. I should not be scared to open my eyes because either outcome was good.

I threw open my eyes and blinked as they slowly grew accustomed to the brightness. It was definitely brighter than our bedroom. I was in a hospital bed. The head of the bed was only elevated slightly so that when I looked straight ahead my eyes landed on the line where the wall and the ceiling met. The wall in front of me featured a sink, soap dispenser, counter, cabinets, dispensers with different sizes of gloves and gowns and paper towels, a rather large flat-screen TV mounted in the upper right corner, and a door to what I assumed was a bathroom. Everything was different shades of shiny beige, grey, and light wood. There was a whiteboard with writing on it that I couldn’t read. Everything was a bit out of focus. I presumed this was because I was not wearing my contact lenses – thankfully they had been removed. I had often worried about what would happen if I ever arrived at an emergency room unconscious with contact lenses in my eyes. I knew that was something we doctors did not usually think about, but I hoped that other team members, probably the nurses, did.

When I looked down I could see my lower legs encased in SCD’s – sequential compression devices. My upper legs were hidden by blankets, but likely were also encased in SCD’s. One of the pumping noises I had been hearing was from my SCD’s. My feet were bare – probably not in socks to facilitate neuro checks. I decided to do a neuro check of my own now that my legs and feet were in view. I wiggled my toes. Nothing. I pointed my toes. Nothing. I lifted my legs one at a time. Nothing. My arms were on top of my blankets propped up on pillows at my sides. The right arm appeared to have a PICC line in the antecubital fossa with three ports, all three of them hooked up to tubing. The left arm had a large capped IV in it, an arterial line in my radial artery, and a pulse oximeter on my middle finger. Since my arms were in view, I tested them out too. I wiggled my fingers. I made fists. I bent and straightened my arms. I lifted them up. Nothing. Nothing. Nothing. Nothing. Was I still dreaming? Or was this really my new reality? I could feel the smile on my face.

When I looked down as far as possible I could just see the bulky plastic tubing I assumed linked my tracheostomy with the ventilator to the left. I could hear the ventilator and monitors to the left and the IV and feeding tube pumps to the right – all slightly behind me and out of my view. The blankets covered up quite a lot, including I suspected a Foley catheter leading from my urethra to a urine collection bag. I looked again at the arterial line in my left wrist. It is used for continuous blood pressure monitoring in critically ill patients, especially those requiring pressors, IV medication to raise blood pressure. It reminded me that I was on norepinephrine which is a pressor. I was on pressors and on a ventilator and my heart had stopped three times last night. Suddenly I realized just how critically ill I was, and the smile vanished from my face.

I looked to the left and the right. On the right was a wall of glass with a sliding door and beige curtains partially obscuring the view to the wide aisle and the nursing station. To the left was half wall and half window. The window showed part of another building and a patch of gray sky. That glimpse of gray sky promised the possibility of going outside someday in my newly transformed body, a prospect that stirred excitement inside me. In front of the window in a comfy recliner was Andrew, fast asleep!

The sight of him filled me with warmth and tingling unlike anything I had felt since waking up in the ICU. I wanted to call to him, lift up my arms, and pull him close to me. I wanted to look into his eyes and let him know that I was OK. Of course, I could not do anything but hold my gaze to the left and stare at him, as if he could feel my stare and wake up.

<< ◊ >>

“Diana, you’re awake.” My nurse had noticed me opening my eyes and surveying my environment.

“My name is Cara, and I’m your nurse for the day.” It was the cheery voice I remembered from before. She positioned herself where I could easily see her face. “You’re in the University Medical Center neurotrauma intensive care unit.” Good, I thought – I’m at a Level I Trauma Center that is affiliated with a National Spinal Cord Injury Model System. (This was not something doctors in the area would necessarily know, but given my longstanding obsession with paralysis, I had researched this.) She paused after each sentence, seeing how it registered on my face before going on to the next one. “You have had a bad injury and we’re taking care of you.”

I smiled broadly and said, “Thanks for taking out my contact lenses!” But no sound came out.

“You have a tracheostomy to help you breathe, so you can’t talk right now.” She seemed to be remembering something, maybe that I was a doctor so she didn’t need to explain the details of what a tracheostomy was. “Once you’ve healed up a bit more, we’ll have speech pathology work with you so you can use a valve and learn how to talk with the trach in.”

I attempted to nod my understanding, but the cervical collar and my lack of neck strength got in the way. Nonetheless, Cara seemed to understand.

“I can try to read your lips. I’ll repeat what you say and if I’m right, or close enough, do two quick blinks for yes. If I’m wrong, do one long blink for no. Let’s try again.”

“Thanks for taking out my contact lenses,” I mouthed.

“Thanks for caring . . . um . . . try again.”

“Thanks for taking out my contact lenses,” I mouthed again and opened my eyes up really big in an exaggerated gesture to help her understand.

“Thanks for taking out my contact lenses.”

I blinked two quick blinks.

“You’re very welcome. Andrew promised to look for your glasses when he goes home.”

“Am I a quadriplegic?” I mouthed.

“One more time.”

“Am I a quadriplegic?”

“Am I a quadriplegic?” Cara said out loud.

I blinked two quick blinks.

“Yes. You had a serious cervical spine injury and you had surgery day before yesterday.” Cara looked a bit nervous.

“What level?” I mouthed.

“What level?”

Two quick blinks from me.

Cara hesitated. She knew what she had to say next would be devastating news for a physician, or anyone familiar with spinal cord injury. “C2.” She looked me in the eyes and let it sink in.

I suppressed a smile, hoping to show a more normal reaction. “What ASIA classification?” I mouthed.

“What ASIA classification?”

Two quick blinks.

“ASIA A.”

So I’m a C2 complete quadriplegic I thought to myself. This meant my chances for improving significantly were small and my chances for making a full or near full recovery were practically zero. My self-examination was right! I gave myself an imaginary pat on the back. I just had to show off a bit. “That’s what I thought,” I mouthed while I smiled weakly, trying to convey that she had just confirmed what I knew already. She didn’t need to feel bad about giving me the bad news.

“That’s what I thought,” Cara said.

Two quick blinks.

“You’re an amazing woman,” Cara said softly, and sincerely.

I looked at Cara. Then I looked at Andrew. Then back to Cara and back to Andrew. “I’m glad we could talk while he was still asleep,” I mouthed.

“I’m glad we could talk while he’s still asleep.”

Two quick blinks.

“I can see what you mean.” Cara didn’t quite know what to say, but her look said everything she needed to. She really did seem to understand. It would be hard for Andrew to watch me get this news. It would be hard for him to feel like he knew before I did and to feel like he needed to tell me what was happening. This way I knew and could be in control of that knowledge. I could ask the questions. There was so little I could control and so little I could physically do at this point – or ever most likely. Being in control of the information about my injury and about my disability would be my area of control.

“Now it’s my turn to ask questions,” Cara said cheerily. “Are you having any pain?”

One long blink from me. But then I changed my mind. Two quick blinks.

Cara seemed to understand. “Where? I’ll start at the top and work my way down. You do two quick blinks when I get to anywhere with pain.”

Two quick blinks of understanding.

“Top of the head.” It was sore, but not bothersome, so no blinks.

“Back of the head.”

“Forehead.”

“Eyes.” Cara paused after each body part, giving me time to think and respond.

“Nose.”

Two quick blinks.

“Is it the NG tube?”

Two quick blinks.

“Yes, that can be irritating.”

Two quick blinks.

“You may need a PEG tube anyway temporarily. That would be more comfortable than the NG tube. Now that you’re alert, we can have speech pathology do a swallowing evaluation and see whether they recommend a PEG tube.”

I wasn’t sure how to respond. Would blinking twice make me seem too eager for a PEG tube? I blinked twice after what I judged to be a long enough wait to indicate my tempered enthusiasm for a PEG tube.

“Do you want pain medication for your nose?”

Long single blink.

“Throat.”

Two quick blinks.

“You had an ET tube in until they put in that trach earlier today. You are most likely sore from that. Plus the NG tube could be irritating the back of your throat too.”

Two quick blinks.

“Do you want pain medication for your throat?”

Long single blink.

“Are you having pain anywhere else?”

Long single blink.

Cara paused before the next question. “Are you comfortable?” she asked, perhaps a bit hesitantly. After all, how comfortable can someone be who has just found out they are paralyzed from the neck down and dependent on a ventilator to breathe and may be this way for the rest of their life?

I blinked two quick blinks enthusiastically. I did feel comfortable. I felt more comfortable in my body than I ever had before. And I felt like I was in good hands with Cara taking care of me.

“Is there anything else you need now?” asked Cara.

“I need a hug,” I mouthed.

“I need a hug.”

Two quick blinks. I surprised myself. The old me would have never asked for a hug from a practical stranger. The old me would have been even less likely to recognize that I needed a hug.

Cara bent over me. I think she put her hands on my shoulders and her forearms on the bed and then pulled her upper body up against my upper body. I was not quite sure since I could not feel anything, not even pressure against my upper body, and my view was blocked by her head and neck. I did feel my head go down lower in the pillow a bit. Her thick dark brown shoulder length hair brushed against my cheeks and her brown eyes looked into mine. The smile on her face seemed genuine.  As she got up from her hug I felt a quick kiss on the forehead.

I smiled and mouthed “Thank you.”

“You’re very welcome,” Cara said.

“I’m tired,” I mouthed. I closed my eyes and fell asleep feeling warm and tingly inside.

Chapter 2 – A Familiar Place?

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.