Mom and I took a short road trip last week back to Craig Hospital in Denver to pick up my new power chair, and it was, in one word, exhausting. We drove all day Tuesday, had appointments and chair evaluations all day Wednesday and Thursday morning, then headed back home. The chair is similar to the one I currently have, with a few differences. The main one is the width. It’s a few inches wider, and it might pose a few problems with doorways and such. Ugh, I hope not.
I am excited about ordering a new manual wheelchair though. I’ve never had a manual chair that actually fits me. Believe me, it makes a huge difference on pushing around your body weight when something is set up the way it should be. I’ll be getting a TiLite Aero Z chair, in flat black. I could have gone with pretty and flashy colors, but really, that isn’t me. The black is good–and flat black is even better. It should be here around March, I’m guessing.
I had never been to Craig Hospital around Christmas. It’s almost always warm when we plan our trips, so seeing snow and Christmas lights was a welcome sight. So pretty. As good as it was to see a few of my favorite people there, I was more than happy to come home. I wanted to be close to home, to my family, to Greg. Craig always makes me appreciate how far life has progressed since I was a newly injured patient, and it always makes me want to soak the goodness in my life so much more.
With that quick visit and the horrible things that have happened to those children in Connecticut, it makes you want to hold the good things close.
Every year I take a trip to Craig Hospital. My reevaluation for my spinal cord injury is a normal routine for my summer. It’s not my favorite thing to do, but it keeps me healthy and on the right track. Now that I’m 10 years out, it’s more important to take care of myself to keep any small issues from becoming bigger ones. The last thing I need is a problem with my health.
So the final report is: I am healthy. They are impressed that I have managed to keep such good posture with almost 10 years under my belt. They are happy that I am happy, and they are all so excited for me to be getting married. Greg was a big hit.
I learned about the new plans for expanding the hospital, and I met a few of the new patients. I saw old friends who work there, and missed a few too.
I am always a little unsure of how I will feel when I go back to Craig, but this year I was so busy with everything else that I didn’t have much time to sulk in knowing how it feels to be a new patient. I always seem to go back to the little girl that was hurt. I don’t know why that is. But thankfully this year was different, and I didn’t worry about anything like that.
I will be back in a few months to pick up the new wheelchair that I ordered, and to reevaluate manual chairs and hopefully put an order in for a new one. I am excited about that.
John is one of my favorite people EVER. I met him at Craig Hospital after we were both injured. My car crash. His boat crash. And we became friends right away. It’s hard not to bond with people who are going through very similar situations, especially when you’re just down the hall from each other for 3 months.
He was one of the guys who were concerned and encouraging, and I think they all looked at me as the “little sister.” I was the only girl, and I had my own dynamic among the boys. As a group, we always laughed, and laughter is a powerful thing when things seem to be falling apart.
His family is awesome. His wife, Amie, and kiddos were regulars at Craig Hospital, of course. His youngest boy had a scooter, and the nurses weren’t too thrilled that he liked to ride it in the hallways. I never cared; he was a kid. Let him have some fun. And I remember the first day I saw his cousin. It was definitely a “wow” moment. (I can’t believe I had such a crush, ha!)
Over the years, John and I have kept in touch pretty regularly. There are times when we go a few months between phone calls, but when we do talk, it’s the same ole John. He still teases me, still asks about boyfriends, still wonders about my injury and any changes. He is one of those people I can talk to all day about being handicap, but never actually feel handicap around. There aren’t many people I can say that about. Maybe because he has been there for the entire “ride,” and we saw each other when we were new to this. Maybe because he understands that being normal is important to me. He gets me that way.
I am so glad I got to see him. I actually thought I was going to cry when I saw him walking up (he regained a lot of function post-injury, and you’d never realize just by looking at him that he was at one time in a wheelchair!). He looks so healthy and happy and tall and just John. Even his teasing about my lip ring was worth it.
I forgot how much I missed him.
sidenote: He is also the one who always calls me “Little Carrie,” which led to the new “Dear little Carrie” series. So, thanks John.
I usually would be excited to go to Colorado, but this year, it just seemed like a chore. Like I don’t have time for this! I definitely didn’t have the energy to deal with the nerves that go along with a week-long doctor’s visit. And physical therapy. And occupational therapy. All of it is exhausting with the hurry-up-and-wait, and I just didn’t want to do it at all.
But I went anyway.
I forgot how sad Craig Hospital can be. So many people newly injured. So many who don’t have any idea where they might be next year at this time. So many who muster all their strength just to make it through one day, just to wake up and do it again the next day. I can hardly believe that at one time, that was me. I was the one that probably looked at and thought “Oh God, poor kid.”
I’m no paralysis expert, but in 8 years, I have learned a thing or two. Sometimes figuring things out for myself is the only way, and I think that it is one of the hardest things I had to learn. What works for me might not work for someone else. So when I go back to Craig and they ask me to give someone a little pep talk about how good life can be after injury, I always feel like I’m lying a bit. MY life has been good post-injury, but my life is completely different than what it was before too. I have times where I am angry or jealous of “walking” people and all that they take for granted. I despise people who stare like I am some kind of alien. I have an ache in my legs when I think hard or long enough about running because I miss it so much. I can’t explain those feelings to a new patient. They’re still fragile, and I know they need encouraging words, not some girl telling them to buck up because it’s hard as shit. And that being happy might take some work every single day, but that it is totally worth it.
This time, Colorado was something new for me. A time to be thankful that I have come to this place, where knowing that I was that fragile is almost foreign. It’s like the girl I was when I was newly injured is so far behind me. I knew I had things in life to accomplish, and I was going to be damned if a wheelchair was going to stop them from happening. I never thought of myself to be quite as strong as people take me for, but maybe deciding that happiness will be an everyday part of my life is the strong part of me.
More pics to come later.
Craig Hospital. It was my home away from home for nearly 4 months. Months that looking back were horrible and weakening. It became my safe haven, a place that made me feel like I was the normal one and all the walking people were outnumbered.
The therapists, counselors, doctors, patients and their families all became a part of my family. They supported me at a time when I don’t think I could have handled things by myself. I thought I was so tough back then ( and to a certain point, I was), but I realize now that without their friendship and encouragement to be as independent as possible, I would probably be a very different person today. Probably less outgoing, less independent, less happy and definitely less driven.
And I want to “give back.”
I want anyone who has to go through anything close to what I did to have that same support and encouragement. The same opportunities and care. I want them to be pushed and held up and loved and hugged, just like I was.
I have given to charities before. I walked for the March of Dimes the very night I was injured in fact, so it’s not just something that being paralyzed has opened me up to. Children’s Miracle Network was the organization that used funds to fly me to Craig in the first place. There are so many that need donations, but I keep mine close to home I guess you could say.
Sending money directly to Craig, knowing that it is helping someone in a situation that I unfortunately know all too well, makes my heart melt with love and empathy. There is a selfishness in charities I suppose. That feeling that you are helping someone else is intoxicating.
I plan on feeling it quite often from now on.
Some people have emailed and asked about the x-ray pictures that I posted a while ago. So for that and a few other questions, I thought maybe I’d explain a bit about my injury. I don’t ever recall writing in depth about the actual accident, just mostly about afterwards. So here it goes.
I was a passenger in the crash with my friends on a Friday night/Saturday morning of my senior year of high school. It happened just after midnight so all the paperwork says April 26, 2003, but to me, it was still Friday night. I won’t explain the entire thing, but to put into one sentence, we went through a stop sign without stopping and a SUV that was traveling on the crossing highway t-boned us. One of my friends, who was also on the passenger side, shattered his pelvis and had to be taken 3 hours away a week later for surgery. Everyone else (besides he and I) in our vehicle was okay, getting by with bruises and scrapes. In the other vehicle, one girl had major damage to her face and has undergone 3 or 4 plastic surgeries to line up the bones correctly. Her sister broke her jaw, and the two men were just shaken up. In retrospect, we all were lucky. It could have been worse.
I sustained a C6/7 incomplete spinal cord injury. Basically, I busted by C6 vertebra in my neck, and the shards of bones pressed against my spinal cord, killing off the nerves. I also cracked my C2 vertebra on each side (they call this a hangman’s break because this was apparently what killed men when they were hanged), but thankfully neither of those pieces touched my spinal cord. If they had, there is no doubt in my mind I would be dead right now. We were so almost a half an hour away from hospital by ambulance, and given the fog that night (which is the only thing I can account for our driver not seeing the stop sign), the EMS helicopter wasn’t flying. I wouldn’t have been able to breathe, and I would have died.
I spent 4 days in a drug-induced stated because my blood pressure kept plummeting, making it too risky for me to have immediate surgery. On the following Tuesday, I had my C6 replaced by a bone graft from my own hip plus a titanium plate and 4 screws, which is what can be seen in the x-rays. To fix the C2, they put a halo on me. It was a brace to keep me from moving my neck at ALL.
Right after surgery. I have no recollection of this. I hate this picture because I think I look dead.
The day after surgery. I don’t remember this either, but I apparently was always smiling. I didn’t cry until night 16 when I woke up in the middle of the night wanting a Pepsi and finally admitted to my favorite nurse that I was having flashbacks.
My dad brought me a corsage the night of prom, which I spent in ICU watching Sweet Home Alabama.
I can’t fully explain it in words, and the pictures above might be slightly hard to see, but the rods were connected to a vest I wore and then 4 screws in my head were connected to the rods. I spent 17 days total in the ICU here in Topeka, then I was flown to Craig Hospital in Denver for rehabilitation. Each week, the halo nurse would come tighten them and check their torque. Movement and exercise loosened them slightly over the course of the days, and the screws would slide on my skull and tear the site where they were screwed in. Believe me, it was as awful and painful as it sounds. In the picture below, I was about an hour away of having the halo removed. I had worn it for 3 months, and my C2 had healed. That was probably the scariest day of my entire hospital stay. I knew that one little slip of those bones would leave me on a ventilator or even dead, and it scared the hell out of me. They unscrewed the screws 2 at a time while I sat exhausted in my wheelchair from being afraid, and I cried the entire time. Well, after I told the nurse “Lefty loosey, lefy loosey!” That day was July 16, 2003. It was the birthday of the girl who had been driving, my (then) best friend.
I came home at the end of August. My family had decorated the new ramp with balloons, and my nieces and nephews had drawn little pictures for me. It was a good homecoming if you have to have one that way. I remember being very full of energy that night, even though we had just driven almost 10 hours to get home. I think I was fueled by excitement, but I was also scared. Coming home to an open environment after spending so much time with medical professionals watching over me all the time made me nervous and unsure that something might happen. It didn’t, and I settled in pretty well. Right away I decided to get things back on track, back to where I had planned they would be before the accident. In that first year, I bought an accessible van, taught myself to drive, and enrolled in college. That pretty much leads up to now, where I am in the next phase of getting a job and moving out of my parents’ house.
I have been very, very fortunate to have an incomplete injury. This means that some of the nerves, although damaged, were still able to have function left. I regained considerable function and feeling in my wrists and hands/fingers. They are still nowhere near as strong as they were previously, but I am thankful to have gotten even a small part back. Complete injuries usually do not regain any kind of function below their level of injury.
I can’t expect anyone to understand all of this mumbo jumbo I am writing. It took me a long time and a lot of discussions with my doctors in the rehabilitation hospital to understand my injury as fully as I could. Even today, I am learning about my injury and how to make life paralyzed and from a wheelchair more manageable.