It was after a big family dinner. The table had been cleared of dinner dishes, serving platters, and salad bowls. Napkins and half-filled wine glasses were still on the festive table cloth. Daniel brought in a stack of desert plates topped precariously with too many forks. The nieces and nephews were called back to the table. Eva brought in an impressive coffee cream torte to much applause and began cutting it and doling out the slices. Everyone complemented her. Andrew fed me a bite and I had to agree. “Eva has become quite the cook and an amazing baker,” I contributed enthusiastically to the compliments. I didn’t have to add “since my accident.” That part was understood by everyone present. Sitting in my black power wheelchair I looked around the table at my family and was filled with warmth and gratitude.
And then I woke up. It was all a dream. I had these dreams often – dreams of me enjoying life with my family while paralyzed from the neck down and in a power wheelchair. I would wake up disappointed to discover I could easily throw off the covers and jump out of bed.
This time it was different. I woke up with heavy eyes and kept them closed. I could not feel any covers to throw off of me. I could not jump up and out of bed. In fact, I could not move or feel anything below my neck. Instead of waking up disappointed with my moving, feeling, able body I was waking up grateful for my numb and paralyzed body. I was in my authentic body. I finally was the real me.
I kept my eyes closed and tried to orient myself. The last thing I remembered was talking to Andrew and feeling nauseated and sensing that I was falling. I listened to the sounds around me for clues. The slow puff and low hiss of a ventilator. The steady beep of a heart monitor machine. Constant whirring pumping sounds. Intermittent high-pitched IV pump alarms. Far away conversations. I was still in the ICU. I was still hooked up to a ventilator. I was waking up after who knows how long. I was having who knows what done to me. I was in my perfect body, but my perfect body was so vulnerable, so out of my control.
I took the leap and opened my eyes, blinking repeatedly as I grew accustomed to the light. Facing me as expected was the wall with the sink, counter, cabinets, and door, all in shades of beige, gray, and light wood. The white board still had fuzzy writing on it, but now it was surrounded by a colorful explosion of what I assumed were get well cards. There were also several bunches of Mylar get well balloons arranged by the white board and in the far corner of the room by the window. By twisting my eyes all the way to the left I could just make out two large banners on the wall to the left of the window. The text was so large and bright that even without my contact lenses I could read “Team Diana” and “Edelweiss Ice Skating Club” on one of them and “Dr. Laska” in a sea of scrawled signatures and notes on the other one. Of course the skating club knew about my accident, but good to confirm that my work was aware and supporting me as well. The old me would have been embarrassed with this attention, but the new me marveled and felt gratitude.
In front of the window, sitting side by side on the extended recliner, both with eyes locked on their respective phone screens, sat Eva and Daniel.
I felt like a spy staring at them, oblivious to my gaze. Eva’s brown hair was up in a ponytail and she was wearing a navy uniform skirt (unusual for her), white polo shirt, and navy school sweatshirt – she must have come straight from school. Daniel’s hair had grown into an unmanageable cloud in the short time he’d been away from home. He looked tired in his jeans and grey rumpled hoody. Despite sitting just inches from each other they were not fighting or complaining about each other. That in itself was a special occasion. I so wanted to stop spying and simply capture their attention, but I could not make a sound or wave to them. I just had to wait and keep my eyes wide open in hopes they would notice I was awake.
“Mom’s awake!” cried Eva. She jumped up and rushed towards me before I could even crack a smile. She plopped her hands on my shoulders (I think) and planted a kiss on my forehead. By the time she pulled her face back far enough to look at me, I was beaming.
“Oh Eva, I’m so happy to see you!” I said, but I made no sound.
Daniel had gotten up to stand beside Eva and looked at me cautiously.
“Oh Daniel, I’m so glad you came! I’m so sorry you had to leave your very first semester of college. I hope you can get back soon.” I mouthed.
“Oh mom . . . . .” eyes wet and bewildered, Daniel seemed unsure of what to say next.
“Don’t worry about saying anything. I’m just glad you’re here!” I mouthed enthusiastically. “There’s nothing wrong or right to say in a situation like this.”
Eva had pulled up a chair and sat with her head at my level. She boldly stuck her right arm underneath the ventilator tubing and rested it on my bed, landing her right hand in my hair. She began gently stroking and rubbing my scalp.
“They say you can only feel your face and your head and a little bit of your neck. Is that really true?” asked Eva.
“Yes” I mouthed and blinked quickly twice.
“Oh yeah – two quick blinks means yes and one long blink means no.”
I smiled and blinked two quick blinks.
“There’s a sign right above you that says that.”
I smiled some more.
“I can’t wait until you can talk again. They say you might be able to soon. If you’re strong enough they’ll change something with your trach so that you can talk. There’s so much to talk about!”
“Go ahead and talk,” I mouth.
“Of course – I can still talk . . . . . Let’s see . . . .”
“Did you put up all the decorations?” I asked.
“Say it again mom – I didn’t catch that.”
“Did you put up all the decorations?”
“Grandma and I put up the decorations. You’ve gotten even more cards and stuff since we put everything up. You were on the news! You even made the newspaper. You . . . .” Eva wanted to say more, but Daniel, still standing quietly behind her, squeezed Eva’s shoulder which made her stop. She nimbly started up again. “You’re getting stuff from patients and friends and people at church and people from a long time ago I don’t even know. Everyone is praying for you and thinking about you. It’s pretty crazy really . . . .”
I couldn’t suppress my smiles. I knew the old me would be mortified, but the new me was willing to share and happy to be getting the attention. After all, I needed all the prayer and all the good healing thoughts I could get.
“Guess what?” Eva said excitedly.
“What?” I mouthed.
“I made a Caring Bridge site for you!”
“What a great idea – I’m proud of you!” I mouthed honestly. Caring Bridge is a great service that allows people to create websites to share their “health journeys” with friends and family. The sites become efficient ways to communicate updates and give support and encouragement during a medical crisis.
“I also made Daniel make you a GoFundMe page,” Eva said while Daniel grimaced. I sympathized with Daniel’s concern, but this was also a great idea given how expensive it is to live with a spinal cord injury and how not everything is covered by insurance.
“That’s a great idea too – I’m proud of you too!” I hoped Daniel understood me. I hoped both of my children understood how proud I was of both of them. I really wanted to see the websites, read them, edit them, add to them, but I already felt my energy fading.
“Let’s take a picture for the websites,” I said.
“Come again mom.”
“Take a picture of me for the websites,” I repeated.
“Are you sure mom?” Eva asked. She was as surprised as I was. Although I often took pictures, I rarely appeared in them. And posting pictures of myself online was an even rarer occurrence.
I blinked twice and mouthed, “Take a picture and let me see it. I haven’t seen myself yet.” I hadn’t seen a picture of myself or a reflection of myself in a mirror since my accident. The motives behind getting a picture were twofold – I was curious and I knew others would be curious too. Eva grabbed her phone and began snapping. I smiled and tried to look confident and happy. In my mind I took on a whole series of poses, but in reality I could not change my pose – only my face was under my control.
Eva scrolled through the pictures with a serious expression, deleting some as she went.
“Let me see,” I mouthed.
“Are you sure mom?” Eva asked.
“I’m not sure that’s such a good idea . . . .” said Daniel looking worried.
“I want to see. Don’t worry – I know what to expect,” I mouthed.
Reluctantly Eva held her phone in front of me and flipped through the pictures that had made her initial cut. I was unrecognizable in the photos taken from further away – just a few specs of skin, my face and forearms, in a sea of blue, white, and beige. As expected I had on a rigid cervical collar with ventilator tubing connected to my tracheostomy spilling out from the center of my collar. Unexpectedly there was another tube coming out of my cervical collar, a pale pink tube connected to an oval pink globe that rested on my right shoulder – some sort of surgical drain. A jungle of tubes, catheters, and leads emerged from my chest, which was hidden by my hospital gown, and connected to IV pumps and monitors on either side of me. The NG tube left my nose, joined the jungle, and then emerged connected to a pump and a large bag of beige sludge. My main monitor screen was filled with at least six colorful rows of data. My ventilator monitor was less busy. You needed a lot of imagination to see that I was smiling. The main impression was that I looked conscious, but very sick.
The close up photos lacked context, but did show me clearly smiling. My hair was barely noticeable, but I could tell it was greasy, stringy, and plastered to my scalp. I wished I had gotten a hair cut before this happened. My left cheek was yellow and purple with bruising and flecked with small, dark scabs. The rest of my face was pale, including my pale, dry, smiling lips. The close ups showed my cervical collar, trach, ventilator tubing, surgical drain with clear bloody fluid, and NG tube, but not much else. I was relieved to see I still looked young for my age despite my predicament – more like early forties than late forties.
“Can you fix my hair and put on some lip gloss?” I asked Eva. I repeated myself and pointed to my lips with my tongue in the hopes she would understand. She understood. She tried to fluff up my hair a bit and dug some plum-colored lip gloss out of her backpack. She applied the lip gloss, rubbed my cheeks, snapped a close up, and showed me her phone.
“Better!” I smiled. ”Let’s get a picture with the three of us.” A woman had come in to hang an IV for me. I assumed she was my nurse, but I did not recognize her. “Have her take the picture.” I moved my eyes in her direction, hoping to make my intention clearer.
“Hi Janet,” Eva said. “Mom’s awake and wants us to take a picture together. Could you please take our picture?”
Janet looked a bit suspicious, but she obliged. She had Daniel get on my right side and had Eva stay on my left side. She took a couple pictures with them standing up, and then had them crouch in closer to me and took some close ups. She and Eva looked through the results, and then it was my turn. It was bittersweet to see myself so vulnerable but with the visible support of my children. The pride and warmth I felt brought tears of joy to my eyes. I was also pleased that I looked better than in the first photos. I was attractive and my smile seemed confident and genuine, especially in contrast with Daniel and Eva’s forced smiles. I was moved to see that both Daniel and Eva were touching me on my arm and shoulder. A shudder of pleasure and a twinge of sadness went through me simultaneously as I noticed this and realized I had not felt their touch at all.
<< ◊ >>
“Have you been taking your medication?” Eva had taken a seat to my left again and had her right hand back on my scalp. Daniel was on a trip to the hospital cafeteria to get food for both of them. “Have you been taking your medication?” I asked again.
“Y-yes . . . . I forget if I’m here in the mornings, but I’m taking it otherwise. Dad’s even reminding me!” I smiled as that was really quite a step forward for Andrew who was ambivalent at best about Eva “depending” on anti-depressant medication.
“How are you doing?”
Eva knew what I meant by that and answered accordingly. “OK I guess. Honestly, I’m a little bit in shock still about all of this. There’s so much to do and find out about, I’m kind of overwhelmed in a good way. I’m too busy to think about dying and wanting to be dead. I haven’t even thought about killing myself since I heard about your accident.” Eva looked at me with awkward silence.
“I’m so relieved you’re doing OK. This whole situation is difficult for everyone, but I’m pleased and proud you are handling it so well. You need to keep taking care of yourself. Take your medication. Go to your counseling appointments. You still need all of that. Keeping yourself healthy is the very best way to help me.” I mouthed all of this as sincerely, slowly, and clearly as I could in the hopes that Eva would be able to read my lips.
“Oh mom – I’ll take care of myself – if I remember. It’s so weird. Even though this terrible thing happened to you I’m not any sadder than I was before. I mean I’m sad about you, but I’m also relieved that you survived. And I think I’m less sad about myself somehow. I feel kind of guilty I don’t feel worse than I do.”
“Don’t worry, I’m sure you’ll have plenty of opportunities to feel worse in the future,” I only half-joked. Knowing my daughter, I was afraid that once the novelty of all of this wore off, the stresses of dealing with a dependent, paralyzed mother would overwhelm her (even if, hopefully, she was not providing any of my care.) Thinking of stress, I thought of my own mother.
“How’s Grandma?” How did we end up taking pictures before I even asked about my Mom? “How’s Grandma?” I mouthed again.
“Grandma’s surviving I guess.” Eva started slowly, but then her words gushed out like a waterfall. “I hope she’s sleeping. She was here with you for almost 48 hours straight. She only left your side to go to the bathroom. She kept squeezing your hand and trying to get you to squeeze back – even though she told the nurse she understood you could not move or feel your hands. She didn’t act like she understood. We had to make her go home and get some rest. She’ll be so mad she missed you waking up. She was so disappointed that you had another episode when your heart stopped and you went unconscious before we got here night before last. And then you were out of it until now. She was so scared. She was so mad about the pacemaker. She couldn’t understand why you had a temporary one that wasn’t working right instead of getting a permanent one right away. She felt like your doctors made a mistake and that mistake made it impossible for her to talk to you. She was so mad and so worried about you. She thinks it must be somebody’s fault that you can’t move or breathe or feel anything. She thinks if they did a good job you should be getting some movement or feeling back by now. I bet the doctors and nurses are happy she finally left.”
“Sounds like Grandma!” I mouthed. But I did feel bad for her and for my family. I was just finding out I had had another code – another episode in which my heart stopped and they had to administer emergency medication and maybe shock me. And this time I had been unconscious for a long time afterwards. I wondered if that had been intentional. I assumed I must have gotten a permanent pacemaker early yesterday and been kept sedated for some time after that. Or maybe I was just unconscious naturally? Had I suffered some brain damage due to low oxygen during the code? How frightening this all must be for Andrew and my Mom and the kids . . .
Once again I felt how vulnerable I was. Hopefully the pacemaker would prevent further episodes of extreme bradycardia or asystole. However, as a sick person on a ventilator in an ICU, especially a person who could not feel or move most of her body, I was at risk for many complications including infections, blood clots, and bed sores. In addition, the more I needed medical interventions, the more likely I would suffer from a medical error or from side effects of a medication or treatment. Without the ability to speak or move, and likely drifting in and out of sleep and consciousness, it would be difficult to stand up for myself. Every day in the hospital was a day of danger. Despite this fearful thought, I fell into an exhausted sleep.
Axel Dreams 