I relaxed my eyelids and the muscles of my face, summoning up the courage to open my eyes. Reflexively I tried to take slow, deep breaths as I would have done before the accident to calm and center myself before doing something challenging. Of course, nothing happened. The ventilator kept breathing for me at the same slow, steady rate. I had to smile in appreciation of the joke my body played on me. Loosened up a bit by this, I was almost ready to open my eyes. Would I open my eyes and see my bedroom? Would I jump out of bed disappointed, realizing all of this had just been an exciting dream? Or would I open my eyes to see an ICU patient room? If so, would I have to look my family in the eyes? Could I make them understand that we could enjoy this new adventure together? Either way – either I would be happy or my family would be happy. I should not be scared to open my eyes because either outcome was good.
I threw open my eyes and blinked as they slowly grew accustomed to the brightness. It was definitely brighter than our bedroom. I was in a hospital bed. The head of the bed was only elevated slightly so that when I looked straight ahead my eyes landed on the line where the wall and the ceiling met. The wall in front of me featured a sink, soap dispenser, counter, cabinets, dispensers with different sizes of gloves and gowns and paper towels, a rather large flat-screen TV mounted in the upper right corner, and a door to what I assumed was a bathroom. Everything was different shades of shiny beige, grey, and light wood. There was a whiteboard with writing on it that I couldn’t read. Everything was a bit out of focus. I presumed this was because I was not wearing my contact lenses – thankfully they had been removed. I had often worried about what would happen if I ever arrived at an emergency room unconscious with contact lenses in my eyes. I knew that was something we doctors did not usually think about, but I hoped that other team members, probably the nurses, did.
When I looked down I could see my lower legs encased in SCD’s – sequential compression devices. My upper legs were hidden by blankets, but likely were also encased in SCD’s. One of the pumping noises I had been hearing was from my SCD’s. My feet were bare – probably not in socks to facilitate neuro checks. I decided to do a neuro check of my own now that my legs and feet were in view. I wiggled my toes. Nothing. I pointed my toes. Nothing. I lifted my legs one at a time. Nothing. My arms were on top of my blankets propped up on pillows at my sides. The right arm appeared to have a PICC line in the antecubital fossa with three ports, all three of them hooked up to tubing. The left arm had a large capped IV in it, an arterial line in my radial artery, and a pulse oximeter on my middle finger. Since my arms were in view, I tested them out too. I wiggled my fingers. I made fists. I bent and straightened my arms. I lifted them up. Nothing. Nothing. Nothing. Nothing. Was I still dreaming? Or was this really my new reality? I could feel the smile on my face.
When I looked down as far as possible I could just see the bulky plastic tubing I assumed linked my tracheostomy with the ventilator to the left. I could hear the ventilator and monitors to the left and the IV and feeding tube pumps to the right – all slightly behind me and out of my view. The blankets covered up quite a lot, including I suspected a Foley catheter leading from my urethra to a urine collection bag. I looked again at the arterial line in my left wrist. It is used for continuous blood pressure monitoring in critically ill patients, especially those requiring pressors, IV medication to raise blood pressure. It reminded me that I was on norepinephrine which is a pressor. I was on pressors and on a ventilator and my heart had stopped three times last night. Suddenly I realized just how critically ill I was, and the smile vanished from my face.
I looked to the left and the right. On the right was a wall of glass with a sliding door and beige curtains partially obscuring the view to the wide aisle and the nursing station. To the left was half wall and half window. The window showed part of another building and a patch of gray sky. That glimpse of gray sky promised the possibility of going outside someday in my newly transformed body, a prospect that stirred excitement inside me. In front of the window in a comfy recliner was Andrew, fast asleep!
The sight of him filled me with warmth and tingling unlike anything I had felt since waking up in the ICU. I wanted to call to him, lift up my arms, and pull him close to me. I wanted to look into his eyes and let him know that I was OK. Of course, I could not do anything but hold my gaze to the left and stare at him, as if he could feel my stare and wake up.
<< ◊ >>
“Diana, you’re awake.” My nurse had noticed me opening my eyes and surveying my environment.
“My name is Cara, and I’m your nurse for the day.” It was the cheery voice I remembered from before. She positioned herself where I could easily see her face. “You’re in the University Medical Center neurotrauma intensive care unit.” Good, I thought – I’m at a Level I Trauma Center that is affiliated with a National Spinal Cord Injury Model System. (This was not something doctors in the area would necessarily know, but given my longstanding obsession with paralysis, I had researched this.) She paused after each sentence, seeing how it registered on my face before going on to the next one. “You have had a bad injury and we’re taking care of you.”
I smiled broadly and said, “Thanks for taking out my contact lenses!” But no sound came out.
“You have a tracheostomy to help you breathe, so you can’t talk right now.” She seemed to be remembering something, maybe that I was a doctor so she didn’t need to explain the details of what a tracheostomy was. “Once you’ve healed up a bit more, we’ll have speech pathology work with you so you can use a valve and learn how to talk with the trach in.”
I attempted to nod my understanding, but the cervical collar and my lack of neck strength got in the way. Nonetheless, Cara seemed to understand.
“I can try to read your lips. I’ll repeat what you say and if I’m right, or close enough, do two quick blinks for yes. If I’m wrong, do one long blink for no. Let’s try again.”
“Thanks for taking out my contact lenses,” I mouthed.
“Thanks for caring . . . um . . . try again.”
“Thanks for taking out my contact lenses,” I mouthed again and opened my eyes up really big in an exaggerated gesture to help her understand.
“Thanks for taking out my contact lenses.”
I blinked two quick blinks.
“You’re very welcome. Andrew promised to look for your glasses when he goes home.”
“Am I a quadriplegic?” I mouthed.
“One more time.”
“Am I a quadriplegic?”
“Am I a quadriplegic?” Cara said out loud.
I blinked two quick blinks.
“Yes. You had a serious cervical spine injury and you had surgery day before yesterday.” Cara looked a bit nervous.
“What level?” I mouthed.
“What level?”
Two quick blinks from me.
Cara hesitated. She knew what she had to say next would be devastating news for a physician, or anyone familiar with spinal cord injury. “C2.” She looked me in the eyes and let it sink in.
I suppressed a smile, hoping to show a more normal reaction. “What ASIA classification?” I mouthed.
“What ASIA classification?”
Two quick blinks.
“ASIA A.”
So I’m a C2 complete quadriplegic I thought to myself. This meant my chances for improving significantly were small and my chances for making a full or near full recovery were practically zero. My self-examination was right! I gave myself an imaginary pat on the back. I just had to show off a bit. “That’s what I thought,” I mouthed while I smiled weakly, trying to convey that she had just confirmed what I knew already. She didn’t need to feel bad about giving me the bad news.
“That’s what I thought,” Cara said.
Two quick blinks.
“You’re an amazing woman,” Cara said softly, and sincerely.
I looked at Cara. Then I looked at Andrew. Then back to Cara and back to Andrew. “I’m glad we could talk while he was still asleep,” I mouthed.
“I’m glad we could talk while he’s still asleep.”
Two quick blinks.
“I can see what you mean.” Cara didn’t quite know what to say, but her look said everything she needed to. She really did seem to understand. It would be hard for Andrew to watch me get this news. It would be hard for him to feel like he knew before I did and to feel like he needed to tell me what was happening. This way I knew and could be in control of that knowledge. I could ask the questions. There was so little I could control and so little I could physically do at this point – or ever most likely. Being in control of the information about my injury and about my disability would be my area of control.
“Now it’s my turn to ask questions,” Cara said cheerily. “Are you having any pain?”
One long blink from me. But then I changed my mind. Two quick blinks.
Cara seemed to understand. “Where? I’ll start at the top and work my way down. You do two quick blinks when I get to anywhere with pain.”
Two quick blinks of understanding.
“Top of the head.” It was sore, but not bothersome, so no blinks.
“Back of the head.”
“Forehead.”
“Eyes.” Cara paused after each body part, giving me time to think and respond.
“Nose.”
Two quick blinks.
“Is it the NG tube?”
Two quick blinks.
“Yes, that can be irritating.”
Two quick blinks.
“You may need a PEG tube anyway temporarily. That would be more comfortable than the NG tube. Now that you’re alert, we can have speech pathology do a swallowing evaluation and see whether they recommend a PEG tube.”
I wasn’t sure how to respond. Would blinking twice make me seem too eager for a PEG tube? I blinked twice after what I judged to be a long enough wait to indicate my tempered enthusiasm for a PEG tube.
“Do you want pain medication for your nose?”
Long single blink.
“Throat.”
Two quick blinks.
“You had an ET tube in until they put in that trach earlier today. You are most likely sore from that. Plus the NG tube could be irritating the back of your throat too.”
Two quick blinks.
“Do you want pain medication for your throat?”
Long single blink.
“Are you having pain anywhere else?”
Long single blink.
Cara paused before the next question. “Are you comfortable?” she asked, perhaps a bit hesitantly. After all, how comfortable can someone be who has just found out they are paralyzed from the neck down and dependent on a ventilator to breathe and may be this way for the rest of their life?
I blinked two quick blinks enthusiastically. I did feel comfortable. I felt more comfortable in my body than I ever had before. And I felt like I was in good hands with Cara taking care of me.
“Is there anything else you need now?” asked Cara.
“I need a hug,” I mouthed.
“I need a hug.”
Two quick blinks. I surprised myself. The old me would have never asked for a hug from a practical stranger. The old me would have been even less likely to recognize that I needed a hug.
Cara bent over me. I think she put her hands on my shoulders and her forearms on the bed and then pulled her upper body up against my upper body. I was not quite sure since I could not feel anything, not even pressure against my upper body, and my view was blocked by her head and neck. I did feel my head go down lower in the pillow a bit. Her thick dark brown shoulder length hair brushed against my cheeks and her brown eyes looked into mine. The smile on her face seemed genuine. As she got up from her hug I felt a quick kiss on the forehead.
I smiled and mouthed “Thank you.”
“You’re very welcome,” Cara said.
“I’m tired,” I mouthed. I closed my eyes and fell asleep feeling warm and tingly inside.
Axel Dreams 