Photo: katenphoto.com (portrait project)
This past Sunday, Mayor Dyer declared November 16 as “Spinal Cord Injury Day” in the City of Orlando. It is no coincidence that the day doubles as my 10-year anniversary of living with a spinal cord injury (SCI). My friend Shelby Norwich and I worked hard to create a fundraiser called Project Vandalism. What I wanted to do was keep myself busy on a day that can be tumultuous. Shelby, on the other hand (and I’m not sure why), took the opportunity to turn my idea into a thesis project for school. The end result was a two-day weekend event, a Rockin’ 80’s Party/Silent Auction at City Arts Factory held Friday night and then a “Walk Because You Can” around Lake Eola Sunday morning, where Orlando’s Mayor dedicated the day to SCI. The goal of both affairs was to raise money for a family to receive a wheelchair accessible van.
Another part of Project Vandalism’s mission was to bring awareness of spinal cord injuries to the community. As someone heading up the project, I was asked to share my experience of living with a SCI over the past 10 years, even though doing so pushes me far outside my comfort zone. Truth be told, I am still not comfortable sharing my personal writing, but for the sake of Dejon getting his van—the new SCI person we chose as the recipient of the donation and also the following interview after this article—and also because I need to fulfill a writing requirement for my independent study at Rollins, I’m attempting to become comfortable with the uncomfortable. I’m going to share my story.
I’ve compiled a list of 10 questions that I’ve been repeatedly asked during the past 10 years of living in a wheelchair. I will attempt to answer them as honestly as candidly as I can. One thing you should know about those of us with SCIs is that we are all different, much like how your kindergarten teacher used to talk about all the colors found in a Crayola box. Therefore, please don’t hold me accountable for speaking for all those that are injured. This is only my story and opinions, no one else’s.
10 Questions Over 10 Years
1. What happened?
During my summer break from college in 1998, I found a job performing in a stunt show called Intensity Games, located at Sea World’s former ski stadium. It seemed like a dream come true because finally I found a way to get paid to do something I loved—gymnastics, a sport that I’ve had an affair with since I was 5-years-old. The show was a combination of skiing and gymnastics (think tumbling and trampoline, not actual gymnastic apparatus like beam, vault and bars), split into two competing teams, Mountain Dew verses Pepsi, with each show an actual competition in front of a live audience. When the summer was over, I postponed my next semester at Florida State University to stay and continue performing—it was just that much fun.
Then during one of the stunts, it was a section of the show titled SLAM DUNK where we bounced off mini-trampolines, passed, flipped and dunked basketballs in hoops, much like you see mascots doing during NBA halftime shows, I fell from over 10-feet in the air to break my neck. To be more specific, I was told my vertebrae C5 and C6 had sublexated, or switched places. This is what I remember: I was on the stage. I had run and bounced upon a mini tramp and launched myself into the air. Just as I was preparing to catch the basketball so that I could dunk it in the basketball hoop, I realized that the ball my co-worker had tossed to me was unusually lower than usual. I was higher than the 10-ft goal and made the split second decision to reach for the basketball even though it was far from reach. The result was catastrophic—I landed head first on a hard, weathered, six-inch thick mat.
Many people have asked why I reached for the ball. My answer has always been, “I just did.” In reflection, I can attribute it to my performing in front of thousands of people. I can blame it on a cautious effort to prevent hazard (it was best to chase down every basketball, loose balls gave potential to landing on them, which could have ended in injury to other team members). I can say that that we were told to do everything in our power to make the show the best it could be and perhaps for a second I thought I was invincible, and I wanted to make miracles happen. But mostly I think it’s what I already said—it was a split second decision.
Ten years later I can honestly say I am still comfortable with that decision, and the others—the choice I made to show up at work that morning, my decision to leave FSU and continue performing in the show as much as possible, my effort to put 100% into all my performances, and ultimately that split second decision to reach for the basketball instead of the basketball rim (Yes, it has occurred to me that reaching for the rim would have saved me. But I don’t dwell on it, what would be the point?). I had the time of my life working at that stunt show. And if ultimately I was going to end up paralyzed, I’d rather it have happened doing something I loved. And it did—I loved performing.
After the initial fall, I landed on my back with my arms and legs sprawled out to each side, like someone who’s attempting to make the world’s largest snow angel, except for there was no snow and my body wasn’t moving. I couldn’t pull any of my limbs back to me. I recall feeling embarrassed that my arms and legs were positioned so awkwardly and I finally asked one of my co-workers to please pull my legs back together. This led to more shame because I was told that my legs had already been taped together. It was the first thing they had done once they arrived on the scene.
Lying there, I remember staring at the November blue sky and noticing there wasn’t one cloud lingering, only the warm sun watching, among the thousand or so people in the stands of the stadium. I imagine now that the guests of the park must have been shrieking in horror at such a scene, but I didn’t hear that. I only heard someone say softly, “Don’t move.”
I recall not wanting to move anyway. My body tingled and it felt like it was floating up, up, and around the stadium. It almost seemed liked I’d be able to turn around and look down upon myself, like the way death is animated on TV shows and movies. I assume this is the closest I will ever come to understanding what an out-of-body experience may feel like. After all, a part of me did die that day.
I remember feeling eerily calm and looking at those around me who seemed to be moving in slow motion. Only they weren’t moving slowly at all, they were running in circles and yelling frantic phrases such as “Call 911, now,” “Grab a backboard,” “Jana, how are you doing?” I am not sure that I said much at this time because I was entranced by two very distinct things: the burning sensation that was swirling around the lower half of my body and the weather. It was how I would define the perfect day—clear, crisp, warm and sunny.
I was in no pain or discomfort while I laid there, just confusion as to what my body may be experiencing. It felt like the wind had been knocked out of me, but clearly more than my breath had been taken away. Quickly and carefully, I was moved onto a backboard, moved away from the view of the audience, examined by an ambulance team, and finally airlifted to Orlando Regional Medical Center. When my helicopter landed on the hospital rooftop, doctors, or people in gowns that I assumed were doctors, were already present and waiting for me.
The following happened in no particular order: they (the people in gowns) drilled steel rods into my head for traction, they filled my arms with IV’s of steroids, they took X-rays and started conducting many tests, they talked to me and sometimes smiled, often sympathetically. At some point they told me my mother wanted to see me. I thought it strange she was at the emergency center already because it had seemed like only minutes since I had arrived. The reality was it had been hours.
“Don’t let her come in,” I told them. “She cannot see me like this.”
Just like they had intruding upon my body, they ignored my rights, and let my mother walk in anyway. She started sobbing upon seeing me. I began apologizing immediately.
“Why are you sorry?” she asked.
“I don’t know,” I answered. But the truth was I felt like I had disobeyed her. “Be careful,” she had told me, for twenty years now. “I will,” I had always answered. But this time I hadn’t. I knew that by the way my friends had looked at me as I was being taken away on the backboard.
The last thing I remember about the ER room was my second CAT scan. In the middle of its process, I suddenly felt nausea and became afraid of choking on my own vomit. I called for help. Looking back, I don’t know how I did this because I was laying flat on my back, still restricted to a backboard, and I could not voluntarily move any part of my body from the shoulders down. This leads me to believe it would have been hard to communicate as well, but somehow I managed to flag down help. They came running, all three of them, and yanked me out of the dome-like machine, turned me (and the board) on the side, and demanded I spit and vomit on my own or else they would stick their hands down my throat and scoop it out themselves.
I successfully managed to throw up on my own, and then blacked out. I didn’t gain consciousness until three days later.
2. Are you angry?
No. And if I was I’m not sure who I would direct that anger towards. I’ll admit sometimes I feel cheated because even now, I still have vivid dreams about gymnastics. I miss that sport. I loved it, and yet, it didn’t love me in return. I had to work twice as hard as all my teammates to keep up with them. I was never as flexible as gymnasts should be. I discovered I had scoliosis in middle school and had to have surgery for it. After my surgery, I made a comeback when doctors said I wouldn’t. I quit shortly after my come back because my heart wasn’t in it anymore (at least that was what I thought). Then I became a gymnastics coach. I became a gymnastics judge and soon after a professional gymnast. And so ultimately, I feel like I’ve spent fifteen years of my life fine-tuning a craft that was destined to be taken away all together. It’s frustrating because I do not know what to do with all that knowledge. It’s like a piano player that dedicates a good portion of their life to the keys, only to have their hands chopped off in some freak accident.
Now, I stay away from gymnastics, even though I’ve been recently asked to become a judge again. I just can’t do it. If I can’t enjoy the sport as I once knew it, then I don’t want any part of it at all (except of course in the rare instances I can judge televised competitions from my living room). I feel childish for making such an admission, but it’s true. I’d rather find new passions and new loves—and I have. Still, I’m haunted by those gymnastic dreams.
3. Does being paralyzed hurt?
Yes and no. In the beginning, I remember having severe burning sensations. I am not sure if those feelings ever went away or if I just got used to having them. Today, I worry more about my back and right shoulder. It aches every day, some days worse than others. I imagine it’s from years of driving my wheelchair and van (I’m right-handed), and typing and eating at unusually high angles and so on. I have a pretty high tolerance for pain, although, I don’t know if that helps or hurts me.
4. How are you always in a good mood?
I’m not, at least I don’t think I am. There are days I am terribly cranky, especially in the mornings. I’ve been known to throw out a few f-bombs while getting ready. It’s just that it’s quite a tedious routine to get ready everyday, and sometimes I become impatient. I’m always thinking ahead to what I should be doing—it’s frustrating. I never was one to plan in advance or have routines before I was injured. So I imagine I’d be irritated in the mornings, even if I didn’t have to physically transfer myself into a wheelchair each day.
I do acknowledge, however, that I have been able to cope with my injury well. I am lucky to have amazing family and friends that have contributed to that. When I was stuck in the hospital, I remember begging my nurses to stay up later than others. I wanted to be the last one to go to bed. The hospital curfew was 8 o’clock, which I thought was a ridiculous time for a 20-year-old to go to bed. I would argue, “My grandparents don’t even go to bed that early.”
I knew I wanted to be able to hang with my friends once I got out of the hospital, which I later explained to the nurses that meant staying up past 9pm and being able to take care of myself. I never wanted to burden my friends with my injury, and so everyday I worked harder than everyone else in therapy to learn how to drink, feed myself, and so on. I’m not sure I have ever told any of them, but my friends were my motivation. I didn’t want to lose them.
It may sound strange but there are days that I forget that I am a quadriplegic. Becoming one was certainly a lifestyle adjustment, but now that it’s happened—I just go and do. I find myself staring into full length mirrors because I am still fascinated by my body, even after 10 years. I’m not as adjusted as most of you are to seeing me and my machinery; I’m only accustomed to using it. So when I see myself sitting down, like for example on video from this past weekend’s events, I have to do a double take—I am still not used to this person. I remember myself very physically. Perhaps it was the years and years of watching myself in gymnastics videos. That gymnastics part of me still has a good ten years on the handicapped me.
5. Can she have sex?
You will notice by the way this question is phrased, it is usually never asked to me directly but instead to some lucky friend sitting next to me. I find strangers concerns for my sexual being entertaining. The answer, Mr. Curious, is yes, of course. Now, I suppose I should ask you the same the question.
6. Do you want help?
Many people over the years have voiced their internal struggle about when is a good/bad time to help me. This is a good question because even I have trouble defining my needs. By now, I’m pretty resourceful. If I need something done and I can’t physically do it myself, I’ll figure out a way to do it. I’ve turned wire hangers into handy devices that pick-up keys off the floor. I use my teeth to open soda cans (which I know my dentist frowns upon). Once, I found a way to make chicken nuggets in the toaster oven. I was starving, and it was a do or die situation. I’m going to brag a little here … I continually impress myself with my imagination when it comes to invention.
At the same time, I don’t mind asking for help if it’s available. I choose having nurses each morning and aids at night because I like to get the handicap things done quickly so I can use my time wisely. But that’s just me—not all handicaps are like that. Some pride themselves on their independence. I’ll leave you with two scenarios: If my shoe falls off in the middle of the street while I’m crossing the road and there are cars coming (and this has happened), it’s a good time to offer some assistance. If I am feeding myself and you grab my fork to do it for me, you may end up being stabbed.
7. How has being paralyzed changed you as a person?
I am certainly more confident. Having vulnerabilities on display for everyone to see kind of gave me an “I have nothing to lose” attitude right from the start. I started just going for it—saying how I felt, doing what I wanted, acting in the way that best suited me. There was no where for me to “fit in” anymore. Remember, I was just twenty when this happened, so I was forced to become comfortable in my skin early, earlier than most people I think.
Being paralyzed also forced me to look inwards for what was next. I never would have guessed I’d be getting my Master’s Degree in Liberal Studies now, or that I’d want to read and write and eventually have my own book shop, or that I had a sensitivity for other people and that I would want to help them, anyone, if I can. As soon as the future—my future, the way I had planned it—was taken away, the pressure was too. I’ve been fortunate not to be locked down to some 9-5 job, and I’ve used that time to study, be creative and search for what is meaningful in life.
Many people only know me in a wheelchair and I find that unfortunate. I’m often asked which me is better—the one standing up or sitting down. My answer is neither, or better yet, a combination of both. The physical me never showed what was on the inside, while the handicap me does nothing but expose that inner strength, and sometimes I think that can be intimidating.
8. Is there a chance you’ll ever walk again?
Not unless a medical breakthrough happens. I am hopeful that stem cell research will be pursued in our country now that the ban on its research will be lifted with the inauguration of our new president. And of course if a cure does come about in my lifetime, you better believe I’ll be the first in line to try it. However, I made the conscious decision a while back not to divert all of my attention on a cure and so I hardly follow the research and its progress. I don’t want to miss out on opportunities of life now because I’ve devoted myself to the possibilities of tomorrow. In other words, I try not to think about the life I might have one day but rather the life I have right now—and that works for me.
9. How long does that thing go for?
I’ve been told my wheelchair will stay charged for up to twenty-eight miles, however, I cannot actually provide any credible source to back that statement up. So it’s possible it’s false. I do know that my chair goes for days before it needs charging, although I plug it in every night before I go to bed. The one time I did run out of juice, someone had to push me home to an outlet. It wasn’t a big deal, just a hassle.
10. Do you realize what an inspiration you are for everyone else?
I never know how to respond to this question. The way I see it is that I went to work one day and never made it back home the same. I didn’t have a choice in the matter. But now that I’m here—a quadriplegic that is confined to a wheelchair—I am committed to making the best of the situation. So I appreciate those of you who acknowledge those efforts, but I hardly think they’re worthy of being called inspirational. I’m just doing what I was taught—I’m not giving up. I do not think that it’s a “gift” necessarily, but more that I simply don’t know how to do anything else.
Phew. I survived and made it through the 10 questions. Thank you for taking the time to read it. Please also take the time to read Dejon’s story.