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.