Back at it

I've had to take three days off of therapy because of a UTI and associated complications.  I really didn't want to, and usually I'd suck it up and go anyway, but at first we weren't sure what was wrong with me, and I didn't want to risk bringing something into a gym full of immunocompromised people.  

Hopefully, I haven't set myself back too much.  I returned today, though still not feeling well, and was quite happy to be back.

Flashback: Reborn

Bright light pressed on my closed eyelids. I opened my eyes, let it in. Everything around me was new.
I had just been born.
Just come into existence.
I had not been anywhere before now.
I had not been.
I wasn't there, and then I was.
My head swelled with pain.
A woman with bright red hair and a pleasant face moved into the light above me.
Mother.
My mother.
Mom.
A profound comfort filled me, and I smiled.
That's my mom.
The thoughts were coming faster now: I was me. Vicki. Me.
Then the thoughts came with questions: What's going on? Where have I been? Where am I?
I must have asked the last one.
"You're ok. You're going to be fine. You're in the hospital."
Hospital… sick… hospital… something wrong, bad… Hospital? Am I sick? Something wrong with me?
"You're ok, though. Don't try to move."
My mother's words came fast; I had trouble latching on to them as they passed by me in her calm, familiar voice. Her hand reached up and stroked my forehead, pushing back and smoothing my hair in that habitual, comforting way she always had when we were sick. I had no fear. I was fine. But ... hospital? Why?
"You were in an accident. But you're ok now."
— Oh.
A flicker of confusion, a quick, sickening realization in my gut. Then the fear came — sudden, fast, startling.
I vaguely remembered a similar sensation; I had woken up to this situation, briefly, before, when it was dark, and I was alone, and couldn't move. I was trapped — ensconced in, distended by, wet concrete that usurped all sensation and motion. But it was just a nightmare, supposed to be better when I woke up. But it isn't better. What the hell is going on?
I asked Mom — Am I still dreaming, or am I awake yet?
Then another disquieting realization: I'd asked questions, but said nothing. I knew I formed the words with my mouth, but something was wrong… . If I could just put my finger on it… I heard the questions in my head, but not in my ears.
I could not speak.
My mother must've seen the panic on my face.
"Don't worry, hon. You're on a respirator. It's breathing for you. You won't be able to talk. But we can read your lips. Can't we, Patty?"
My younger sister's dark head appeared beside my mom's bright one.
"Hi, Vic," she said through a forced smile, flopping her hand in a silly little wave.
— Hey, Pat. Mom, I don't remember any accident. Are you sure?
"Yeah," Patty started, "you were out with —"
My mother glared at her. Patty clammed up. She looked distinctly uncomfortable.
"Yes, you were in a car accident."
— Was I driving?
"No, sweetie. You weren't driving."
Good, I thought. All I had was an expired learner's permit. If I'd gotten into an accident already, I'd never get my license. No license come September would mean my senior year was going to suck, big time.
— Who was driving, then? Who was I with? Where was I?
"You had gone out with Kevin and Tim," Mom told me. "You were on your way home from Lakeforest Mall."
The mall. What was I doing at the mall? I waited, but no images surfaced.
"Yeah," Patty added, "you got off work early, so you went out."
Work. Ah, yes. Pizza Movers.
— What's wrong with me?
"You have a broken neck."
No wonder it hurts so badly. I broke it. Oh, well. Broken arm, broken neck - same difference. I'll be up and around in no time. Wonder what kind of cast they put on a neck. I moved my head slightly from side to side. Heavy pain seeped through my neck, up the back of my head, but I could move freely. Guess they didn't put the cast on yet.
— How long have I been here? When can I go home?
"You've been here awhile… close to two weeks." She tapped a small, blurry grid on the wall. "Today is June 8. It happened on May 25."
The date seemed innocuous enough; I remembered nothing special about it then, although it would soon become a date etched indelibly into my life. I'd not expected that I'd been in the hospital that long, but unable to escape the feeling of newness, of just having come into existence, of not having yet been, I took them at their word.
— Can I go home soon?
"Oh, sweetie." My mom rubbed my arm, a pained smile cracking her face, "You're very sick. You're going to be just fine, but right now you're still sick. We have to get you better first. Ok?"
I nodded. Pain shot through my neck. My broken neck. The pain rocked my head, slightly dimming my vision. Must've been some wreck. I cast my mind back, straining to remember that night — what had happened, where I'd been. Still, only blanks.
— Where is Kevin? And Tim? Are they OK?
Patty glanced furtively at my mother, then disappeared behind her. It was only my mother's face hovering over me now.
"Tim is a few doors down the hall. He broke his leg pretty badly — "
"In like three or four different places," Patty piped in from somewhere behind her.
"He also broke his wrist — "
"And messed up his elbow. They put screws in it! It was pretty nasty," Patty added, reappearing briefly beside my mother A deep flush had settled over her face, and her green eyes shined brightly.
"But he's going to be just fine," my mother continued, after shooting a semi-reproachful look at at my sister. "In fact," she went on, brightening up a bit, "They're moving him out of the ICU tomorrow. He's going to have to use crutches for a long while, but he'll be fine."
It was quiet for a moment. Took me a minute, with the sluggish pace of my brain, to let it all sink in. I waited for them to finish, but neither said anything.
— Where's Kevin? Is he here too? Is he going to be OK, too?
The uncomfortable look on Patty's face had faded some, but as she caught my eye it suddenly returned and again she disappeared into the periphery. My mother took a deep breath, and spoke very slowly, softly.
"I'm sorry, Vicki. Kevin didn't make it."
I struggled to grasp her words, but understanding eluded me as deftly as memory had. Didn't make it. Didn't make it... The words reverberated, like bass hits. Didn't make it where? To the hospital? Was he somewhere else? Where else could he be? Did they let him go home already? Maybe he'll visit…
— What do you mean?
"I'm sorry, Vic. I'm really sorry, but Kevin died."

The word hit me like a bat, driving the confusion from my head. Died? She couldn't have meant that. Or I'd misunderstood her. Or she'd said something else. It simply wasn't possible. I'd just seen Kevin yesterday… or however long ago it was they say the accident happened. He drove me home from school on Friday. I sat with him at lunch. He was just here. He can't die — he's only 17! There's nothing wrong with him! Nothing! No!
— No! I said firmly.
Somebody had gotten something wrong, somewhere. He's probably just down the hall. Maybe on a different floor. Or a different hospital. Somebody had gotten their information mixed up.
— No! I said again, and shook my head in emphasis of my refusal to believe such a blatant untruth. Hot pain rocketed up my neck, searing through my head and eyes.
Tears trickled down my mom's cheeks. "I'm sorry," she kept saying, "I'm so sorry."
I cried. Mom wiped the tears off my cheeks hurriedly, softly uttering those mother-comforting sounds shh…it's ok…shh…. I cried, but I didn't feel it. I waited for the pain to come rushing through me, fill up the emptiness, but I just couldn't believe it enough for it to break through. It just wasn't so.
She reached down and grasped my hand; I felt only a slight pressure, as if my hand and fingers were wrapped in a thick towel. My arm felt rather odd — a dull ache in my wrist; up my forearm, a muted pins-and-needles sensation as if my arm had fallen asleep. Almost a buzzing sensation. But distant, an echo of the feeling. A layer of insulation kept the pins and needles from poking through, sticking my skin; held them in, swarming close to the bone like bees in a hive. It seemed almost as if the cast were inside my arm. But that couldn't be. My mind returned to the possibility of a nightmare, still searching for some plausible, lucid explanation. Still, the dull pressure on the skin. The buzzing inside. I couldn't figure it out…
— What happened to my arm?
I lifted it off the bed, trying to hold it up so I could see it. It was heavy. Almost too heavy.
"Nothing. Your arm is fine," my Mom said. "Don't try to move it."
— Did I break it? Is it in a cast?
"No, but you have an IV in it, so hold it still."
— Oh. Feels funny…

My mother's eyes welled up again.


A similar scene replayed many times over the first two weeks, during my semi-cognizant state. I was not in a coma, but between a severe concussion and the drugs they had me on for pain, I flitted in and out of consciousness; I still have no recollection of the first two weeks or so after the accident. I can only imagine how it must have been for my family:

"Where am I?
"In the hospital."
"Why?"
"You were in a car accident. You broke your neck."
"Oh. What happened?"
"You were out with Kevin and Tim. On your way home."
"Are they OK?"
"Tim is hurt, but getting better. Kevin died."

And they would have to watch my face crumble as recognition set in, wipe away my tears and keep my nose from running down my cheeks and neck.

"Why can't I feel? Where'd my legs go? Oh, God — did they cut them off? I can't feel!"
"Honey, it's the paralysis. Spinal cord… nerves… damage…"

Sometimes I would understand, and they would have to talk me out of hysterics. Other times I would stare blankly, waiting for someone to please explain to me what the hell is going on, and they'd have to go through piece by agonizing piece until I understood, watch each fact strike me like a fatal blow, then calm me down when recognition trenched my murky brain.
Eventually, I would go back to sleep. Drugs, fatigue, shock, a combination of any or all would drag me back under into my timeless unconsciousness, my ignorant bliss, my comfortable numb. And eventually I would wake up again, tabula rasa, desperate for someone to fill me in on what in God's name was happening; and for them, the process would begin anew.

"What? Where?"
"You're in the hospital. You broke your neck. You can't move."

And I would cry….
To this day, I don't know how they did it. Sometimes, above and beyond all logical/rational reasoning, I hate myself for putting them through it.

But that was just the beginning. For all of us.

Wrapping up week 3

I am beginning this program at something of a deficit -- I have quite a few issues that must be resolved before I am able to begin therapy in earnest. Among these issues are:

scoliosis
subluxated right shoulder
sacral decubitus ulcer
heterotrophic ossification

Not the least of these issues are the musculature-induced scoliosis in my back and the subluxation of my right shoulder. I suspected both would be a hindrance, but each has proven to be a significant impediment.

This therapy program is not a quick fix -- it's not even a sure thing. It will be years of work, and progress will be slow -- yet I find myself inexplicably excited by the prospect. 

The ASIA scale and the cervical spine

C-4 ASIA B (incomplete) was the diagnosis arrived at in May 2008, during my initial evaluation at the Kennedy-Krieger Institute, and it was my first spark of hope.
The American Spinal Injury Association (ASIA) Impairment Scale is the method by which doctors can classify an injury in uniform and unambiguous terms. Its parameters provide guidelines by which to determine whether an injury is complete (no motor/sensory function below the level of injury) or incomplete (some degree of motor/sensory function present below the level of injury). The scale ranges from A to E, with A indicating the most impairment and E indicating no impairment.

A = Complete: No motor or sensory function is preserved in the sacral segments S4-S5.

B = Incomplete: Sensory but not motor function is preserved below the neurological level and includes the sacral segments S4-S5.

C = Incomplete: Motor function is preserved below the neurological level, and more than half of key muscles below the neurological level have a muscle grade less than 3.

D = Incomplete: Motor function is preserved below the neurological level, and at least half of key muscles below the neurological level have a muscle grade of 3 or more.

E = Normal: Motor and sensory function are normal.

The C-4 designation indicates an injury at the fourth vertebra of the cervical spine. Nerve roots, which insert at each level of the spine, correspond to different parts of the body, thus where the injury is located on the spine determines what level of functionality the injured person will have. The nerve roots of the cervical spine and corresponding levels are:

C3 - an injury at this level or above will result in respirator dependence
C4 - shoulders, diaphragm, weak biceps
C5 - biceps, deltoids, some wrist
C6 - wrist, thumb
C7 - triceps, fingers

My initial injury was C-5/6, but that's another story for another day. Suffice it to say, when I left primary care, five weeks after the accident, and went to rehab, my injury level was at C4, and that's where it is today.

In the first few months post-injury, there was some debate as to whether my injury was complete or incomplete, but after I came home from rehab doctors told me it was in fact complete (or, ASIA A), and I'd come to accept that. So, ASIA B was news to me.

It was my first spark of hope, but also the first indication of what I'd had wrong all these years. Everything I knew about SCI has been turned upside down. All the definites have become maybes, all the impossibles, possible.

Trace triceps

My new OT, Mike, held my left arm in his hands. He asked me to pull my hand in toward my face against resistance, carefully assessing my strength and control of my biceps and determining what muscles I was using -- that I had the ability to use -- to move my arm. I pulled my hand up with fairly little difficulty. He nodded and indicated as much to Jen, the student OT who is training with him. She jotted it down on the page with other statistics about the sensory-motor function of my upper extremities.

"Now, push your hand out toward me," he said.

I already knew it wouldn't move, but I did as I was asked, and attempted to push my hand out and straighten my arm.

Mike nodded. "Trace triceps," he said to Jen.

My breath caught in my throat as the world opened up. On the scale that muscle movement is measured, a "trace" is just above nothing. But, it is still more than nothing -- which is, up until this afternoon, precisely what I thought I had. That trace can be built up, strengthened. I suddenly have the prospect of the use of a new muscle, and all the possiblities that use affords me.

The coming months will, I think (or, at least, I hope), be a series of small victories.

Wrapping up week 1

Today I stood up for the first time in 17 years. I forgot how far away the floor is. I'm debating posting some pictures of it. As soon as I get over myself, I will.

I'm getting used to getting out of my chair -- something I don't typically do, unless I'm going to bed.