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.