When It All Changed

 (Photos will be added - eventually - to break up this long, ugly wall of text!)


It was 1992, and I was 12 years old that Christmas. It was cold, of course, but we hadn't yet had more than a few flurries fall, and I was glad; the cold, dry air was great for breaking in my new birthday roller blades after school. I loved being outside. I wasn't much of a tomboy anymore, but I loved the crisp air, and the wind on my face as I rode my bike or skated around the neighborhood with my Walkman.

On a lazy Sunday morning, just before Christmas, I sat on the floor watching television. During a commercial break, I got up and walked into the kitchen.  I felt a painful, sharp twinge in my back as I moved, and it hurt bad enough that I went upstairs to look for my mom. Mom, who had recently gone back to nursing school, was studying for a final. She suggested I lay down, thinking I might have pinched a nerve, so back downstairs I went, where I promptly sat back down on the floor. Not long after, my calves started to hurt. Thinking I probably should have listened to Mom in the first place, I moved to the couch, where I immediately realized that I had to pee. Groan.  We had a two story house, and the first floor bathroom was occupied by one of my brothers, which meant that I needed to go upstairs.  Double groan.

By the time I walked from the family room to the stairs, which couldn't have been more than twenty steps, I was in a great deal of pain. My legs felt like they'd been stabbed, repeatedly, with hot knives. Calling to mom from the bathroom, she insisted I come lay on her bed when I had finished. I stood up, or at least, I thought I had, but instead, I found myself falling, crashing back down to the toilet. Something was definitely wrong.

Mom came running and helped me to her bed, where I lay on my stomach, trying to relax and figure out what had just happened, while she ran downstairs for ice packs. Her thought was to stimulate the nerves by alternating hot and cold packs, and so there I stayed, with ice packs and heating pads draped across my calves and thighs. I started to relax, comfortable on the bed, but I could tell my ice packs had melted. "Mom, I need more ice," I said. "I just refilled your ice," she said. We argued back and forth for a moment, before mom finally said "Isabella, LOOK", and sure enough, a fresh pack of ice was in the middle of my leg. We looked each other in the eye. "hospital?" I said. "hospital," she confirmed, and we managed down the stairs and into the car.

We arrived at urgent care, and I only remember a few select moments:

1- I was really frustrated. I didn't know what was happening, and everyone seemed to think i should know why I couldn't stand or feel my legs.
2- I was poked, repeatedly, in the arms and legs, to see where I could feel and where I couldn't. I was irritated when I couldn't, and it hurt when i could.
3- it was decided that I needed to be moved, via ambulance, to University of Michigan hospital. As I waited for the ambulance, I was strapped to a backboard with a neck brace, in case there had been a trauma they'd missed. It seemed like ages before the ambulance arrived, and I waited and waited and waited, annoyed and immobile, and bored enough that I lay there, counting the dots in the ceiling tiles, a task I would get very good at in the coming weeks.

Ann Arbor, MI was about a thirty minute drive from where we lived in Canton, but I have absolutely no memory of the drive. I was hauled into the emergency room, my clothes stripped. Nothing more embarrassing for a twelve year old, than being stripped down by strangers, right? Wrong. My lower half had stopped functioning, and I had lost control of two particular bodily functions. The testing began. X-rays, MRIs, Ultrasounds, and one awful and painfully memorable spinal tap. I had no concept of time. Everything just happened around me. At some point, it was decided the neck brace could come off and I could sit up a little, but I had also been given some steroids, so i was a little...loopy. The day passed, and I was admitted to Mott's Children's and taken upstairs. It was dark and quiet, clearly late, and I was settled into a room on 6 East. The pediatric floor was separated into east and west. East was for kids who were "sick", west was for kids with physical issues, so I was moved, at some point in the next day and a half, to 6 west. It felt like a week in East, I hated that side of the floor. I was annoyed by the volunteers. I hated the food (seriously. Turkey tetrazzini? Gross!).  I learned how to transfer into a wheelchair. I started physical and occupational therapy. I was moved to west, and started feeling a little more at ease. Mom stayed with me every night, except one, early on, when she wanted to sleep in her own bed and shower at home. She promised to bring back the comforts of home, and she did - with a pot of my favorite soup, a bag of nacho cheese Doritos and my baby blanket.  

It was December 20, 1992, when it all started, and I was sad to miss Christmas at home. U of M had a little hotel, The Med Inn, and my mom stayed there a few times over the eight weeks I was there. On Christmas Eve, my whole family came up to the hotel room, with a tree, stockings and presents, the whole nine yards, and we enjoyed our Christmas despite being stuck in the hospital. Christmas morning, I met them back in the hotel room, and I remember watching a Godzilla marathon with my brothers. You know, like most people do on Christmas morning?

I spent eight weeks in the hospital. I had a lot of tests and exams, a lot of pokes and prods, a lot of relearning how to have a daily routine - everything from showering to tying my shoes. After about three days, my right toes started to wiggle.  I hated my physical therapist. I really hated my primary neurologist, but my nurses were great. I remember almost none of them now, except one - Trina, who used to threaten me out of bed with a Super Soaker. We had water fights often. I loved when the U of M swim team came to visit (oooh. boys). I had a few friends visit, one or two teachers, who brought homework (gee, thanks.)  I made the best of it all, what else are you supposed to do? I was sent to nine different shrinks over those eight weeks. Nine! Each one more insistent than the last that they were dealing with a girl in serious denial. My medical records actually stated that I was "a twelve year old with an inappropriately cheerful effect". They could not understand why I was NOT crying. By the time I met with the ninth guy, I was sick of it. I finally challenged him "what do you want?! Do you want me to cry? Fine. I will cry, but you have to tell me - will it fix it? Will it go away?" When he stammered and stuttered and mumbled "uh, well, um, no", I said “OK then. Can I go?,” and they never made me go back.

Coming home was unusual. Everything in our house was inaccessible to me. My bedroom was upstairs, and my cat loved the basement. All of the bathroom doors were too small. All of the cabinets I needed to reach were too high. Going back to school, I was met with MORE challenges, and certainly a lot more stares and whispers than I’d expected. I lost a lot of friends. Admittedly, I didn’t have a whole lot, being new to the school (we had only moved back to Michigan just before school started in the fall), but it was quite an adjustment, to see how many people I’d called friends just fell by the wayside. Some of them came back in 7th and 8th grade. Those who didn’t, well, they clearly weren’t friends I needed. My very best friend never gave up on me (Hi Amanda! Love you!!) and to her, and those who DID stick with me, thank you. I don’t know that I could ever articulate properly how much that meant.

My life had been typical up until I was 12 years old. My whole world was shaken up in the course of forty five minutes, when I went from walking into my kitchen to completely paralyzed from the waist down. I could feel touch, but not temperature or pain. I could wiggle my toes just the slightest, and it took a lot of effort to do so.  I felt frustrations, certainly, but overall, I managed to maintain a pretty positive outlook. OK, so I don’t walk anymore. Big deal, moving on!  And its that same attitude I’ve tried to maintain ever since. Things happen. You can either sit and pout and cry and shut yourself off from the world, or you can figure it out and just keep going.