Chapter 4 – Reunion

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

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

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

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

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

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

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

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

<< ◊ >>

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

“Can I go in now?”

“Sure, she’s expecting you.”

“How is she doing?”

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

“Like last night?”

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

“Has she moved anything since I left?”

“No.”

The conversation stalled.

“I don’t know what to say to her.”

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

“What if I cry in front of her?”

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

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

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

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

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

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

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

He continued to look confused.

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

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

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

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

“I love you Andrew!”

“Oh . . . I love you too Diana.”

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

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

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

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

“I’m happy.”

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

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

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

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

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

“Hi, I’m Andrew, Diana’s husband.”

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

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

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

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

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

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

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

“How about Daniel?” I mouthed.

“Daniel?”

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

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

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

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

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

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