4 Comments

My Wheel Life

The stories of how I got this way, and the motivations that keep me rolling.

Ten Days (Part 2)

Ten-Days (Part 2)Everyone reacts differently to hearing catastrophic news. If I would have known then, what I know now I would have just cried my eyes out when I was told I would never walk again. Instead, I saved face and took the news like a gymnast–I smiled and asked what I could do to improve my condition. Apparently what I thought to be a brave and optimistic response was actually very frightening to the surrounding medical staff. Because the very next day a hospital psychologist was sent into my room to have a “talk” with me.

“It’s okay to cry,” she told me. “Your whole life is about to change.”

“I know,” I replied.

“Have you cried at all?”

“No.”

“Not even privately?”

“No, but I’m not much of a crier. Never have been.”

“Do you understand what has happened to you?”

“Yes.”

“I’m not sure that you do.”

I paused.

“Do you know what being paralyzed means?”

The patronizing tone of the psychologist’s voice was making my skin itchy, at least in the spots I could feel. How dare she try to define being paralyzed, I thought. I actually was paralyzed. She had read about it in a text book. I felt pretty sure my experience trumped hers. I also was insulted to hear that I apparently wasn’t acting appropriately and in accordance with other new spinal cord injuries. Had I missed a pamphlet titled Reactions To SCI? Or was there a SCI rulebook somewhere? How am I so bad at being paralyzed, I wondered. And what gave this lady the authority to know any better?

“I get it. I really get it,” I snapped.

“I don’t think you do.”

“I’m paralyzed and I’ll never walk again,” I replied, flippantly. “Got it.”

“I feel like you may be in denial,” she suggested.

“I feel like this meeting is not necessary and completely a waste of my time,” I wanted to say. But instead of showing any emotion, or giving her any reason to overanalyze my actions, I remained stoic and dumbfounded. Denying denial seemed like the wrong approach for this particular pscyh evaluation.

“Well… I don’t know what to tell you exactly.”

Sitting on the empty hospital bed to my right, she glared at me. Determined to win the blinking contest, I stared right back at her.

“I’m here to help you. And I think you should discuss how you’re feeling.”

“I feel fine, honestly,” I said, much more calmly than before.

The debate ended in my favor when she eventually left the room. I’d learn later that her suggestion from our brief encounter was heavy counseling upon my entrance to the next facility. Apparently, I couldn’t stay at Orlando Regional Medical Center forever and soon I would need to pick a rehabilitation to attend. In the interim, there was still so much to learn about my newly injured body. There was also now someone to focus any anger upon–bitch.

***

Lying on my back, I could flop my hands up onto my chest but then couldn’t straighten them down, back to my sides. At Day 4 & 5 I was ready to bust out of the hospital. I felt bored and like every Rocky movie, I was ready to make a come back. Unlike when I entered the hospital, I could now move some parts of my body. And in between guest visits and sleep I’d entertain myself trying. With help I started sitting up, slowly. Although anytime I moved too quickly, the world went black. First, I’d see stars, then my ears would start to warm and tingle, and if I didn’t adjust myself quick enough, either up or down, I’d pass out from low blood pressure, and flop back into the bed.

When sitting, I could raise my arm in front of me but I noticed my wrist was limp. I had no control over my wrists or my floppy fingers that dangled like tentacles. Not walking was starting to seem like the easiest part of this injury. Not being able to scratch my face, pick my nose, brush my hair, brush my teeth, push a wheelchair, write, feed myself, hold someone’s hand, or hold anything for that matter was unthinkable, yet exactly what I was suffering. I felt useless. For the past 20-years I had taken my two hands and ten fingers for granted, and now I desperately wanted them to work again.

Before I became paralyzed, I associated a paralyzed person as someone who cannot move his/her legs. The loss of arm function or finger dexterity had never occurred to me. I had never studied someone in a wheelchair before, never looked at someone’s hands. Sure I had heard of Christopher Reeves and knew that there was such a thing as a quadriplegic. But I had never thought—really thought—about what life might be like without full use of my arms and fingers. And now that I was starting to understand what that meant, the thought scared me silly. Still, I never told anyone about these fears. My friends and family seemed so hopeful for a recovery, and the “miracle’ that the doctor had mentioned earlier. I didn’t have the heart to let them know it didn’t seem feasible, at least not yet.

Another part of me that no longer worked due to my injury was my internal temperature gauge. Every four hours, even in the middle of the night, a nurse would come take my temperature because it no longer was stable at 98.6 degrees. One hour I’d have a fever of 102 degrees and then the next hour my temp would drop to 96 degrees. It was completely unpredictable and unexplainable, except for that it was the result of my body trying to adjust to its new form. Often, this meant I was always freezing cold. Not even a polyester blanket (or 5) straight out of the dryer could keep me warm. It didn’t help that I was stuck lying in bed with little movement or blood circulation. But ultimately, it didn’t matter. I was told my body temperature would no longer be regulated but take on the temperature of my surrounding environment, like a cold-blooded animal, a lizard. As ridiculous as it sounded, the explanation made sense to me because the only thing that made me comfortable was being directly in the sun’s light. Once able to sit in a wheelchair, each day I’d find a window and sit in front of it for hours. Just like the alligators I had seen on the shores of the St. Johns River, I’d park myself  in one place and open my mouth to eat up the warmth. As it turned out, my personal hell was not hot at all. It was cold, and bitter, and unfathomable–what felt like being in an eternal ice chest.

There is a test created by the American Spinal Injury Association that determines the severity of one’s spinal cord injury. Because like a snowflake, no two spinal cord injuries are the same. There’s just too many nerves in our spinal cords, and too many different ways to damage them. The test uses pin pricks to determine where the body sensation and body movement starts and stops. Upon learning of this test, I became excited. I was eager to see where I sat on the spinal cord injury bell curve. As a child, I had always aced school tests and in fact was placed in all gifted classes. So I was eager to perform, and most importantly certain I’d do very well for my condition.  The problem was I didn’t realize how unforgiving paralysis was at the time. In the world of para- and quadriplegia, there are no above average performances. You either move, or you don’t.

I was excited when the therapist showed up to my bedside and asked me to close my eyes. If anything, the testing would give me something to do. When you cannot move your own body time seems to take a little longer. And by Day 5 & 6 I was ready to bust out of the dreaded, cold hospital. Using her finger and a needle, a therapist touched different parts of my body, just like how she explained she would, and then asked me to define the sensation using a scale of 0-5, with the number 0 being no sensation and the number 5 being perfect sensation. At that particular time, the results categorized me into the C5-6 quadriplegia category, most commonly known for having moving biceps but no tricep or finger dexterity. I could feel the pin prick on my face (5), some pressure on the inside of my arms (3) and then absolutely nothing from my nipples down (0).

There was another part of this test, although not as pleasant, that determined if you were a “complete” or an “incomplete” paralyzed person. The test consisted of a doctor sticking his finger up your butt. If you could tell him when he did it, you were labeled an “incomplete injury,” meaning it was likely you could regain more function, and possibly recover all together. If you could not feel any sensation down there, you were labeled a “complete injury”—as in there is no chance of recovery. Before injured, I considered my butt my business. Nothing went in it, only out, and that was in the privacy of my own home. I was one of those shy poopers, the kind that simultaneously runs water in the sink so there’s no noise. On that day, however, in front of a doctor, my nurses and my mother, I found myself yearning for any feeling of a finger in my anus.

When I felt no sensation, sadly I asked the doctor to repeat the test claiming I hadn’t been ready. Politely, the doctor obliged my request, but it wasn’t necessary. I knew the truth, and based on the severity of my injury I think he did too. The word ‘complete’ was scribbled in my file and that was that. Looking over to the face of my devastated mother, I felt ashamed. Once again, I had failed her–failed us.

***

Thank you for reading and showing your support! Look forward to the next installment to be featured April 2, 2013.

To read the previous installment, Ten Days (Part 1), click here.

To start at the beginning of my story, click here.

 

 

4 Responses to “Ten Days (Part 2)”

  1. Melissa says:

    Thanks for sharing your very personal story Jana. <3

  2. Barbara says:

    You have probably heard this a gazillion times, but I truly admire your
    bravery and honesty and you travel this path again.

  3. Jilayne says:

    Jana!
    I have thought about you on so many different occasions and have always wondered what you have been up to!?!? NOW…I know! Following your posts have been so interesting and I try to remember how long it was between your accident and when I first got to see you. Or should I say ride on your wheelchair through CityWalk and empty your foley pretending I was a real nurse :) I always think of you with a smile on your face and it looks like amazing things have come your way!
    Hugs! Thanks for sharing your stories!
    Jilayne

  4. Adrienne says:

    Just. Keep. Writing.
    In Ten Days (Part 1) I’m amazed at the detail you can recall. Thank you for sharing this story. You’re one brave chick.

Leave a Reply