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.

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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.

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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?

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“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 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.