Posts tagged ‘spinal cord injury’

March 14, 2013

hello, tilite.

IMG_5583My new chair is fantastic. Normally, I don’t get excited about equipment that has to do with my spinal injury. Most of it is more of a pain than any kind of excitement. But this, this is exciting.

FAVORITES:

+ It fits me. When I was injured (almost 10 years ago!), my dad’s insurance didn’t really want to help with equipment. I guess they thought that paying my medical bills for 4+ months was enough. So the manual wheelchair that I had was one that was donated to me from Craig Hospital. And it didn’t really fit me very well. I used it and made due, but it wasn’t right for me. This one is fit for me though.

+ All over flat black. 14 tiny inches wide. NaturalFit hand rims. Between the narrowness and the shape of the hand rim, it is a million times easier to push (although some grip on the hand rims will probably be something I will be adding). I didn’t really think much of pushing around a chair that was 18 inches wide, but looking now at my old chair, it was a tad bit ridiculous. My arms weren’t made for that.

+ New back. Comfortable, shorter, and more contoured.

+ Hard-surface tires. Previously, I used knobby tires, more for outside terrain, but the new tires work much better for where I am going.
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September 17, 2012

lately.

Don’t let that picture fool you. It’s been a rather stressful week around here.

First, we signed out contract with the photographer for the wedding. That was actually a load off, I guess. He is awesome, both as a photographer and a person. I am excited that he is a part of our big day!

Then, Sons of Anarchy started their new season on Tuesday, and I drove to Kansas City to watch it with Greg and Brandy and Mike. Then Thursday Greg texted me early that Grant and him were going to the hospital because Mike had been taken to the ER. I wasn’t sure on details and neither was Greg for a a while. It turns out that Mike has an infection somewhere that they can’t find yet, but it caused his autonomic dysreflexia to flare up and his blood pressure to spike which then caused a bleed in his brain. Scary, scary shit.

Something similar happened to Jake and he died just a few hours later. I was scared and didn’t really know how to react to think that the same thing could happen to Mike. Paralysis is a funny and weird condition, and it comes out of nowhere.

GOOD NEWS: It appears that Mike probably doesn’t have any permanent damage to his brain. He is talking good now and his blood pressure is down, although they are still trying to locate and diagnose the infection. I am hoping by tomorrow they have more news. Better news.

So just give me a little favor and pray that nothing else happens for Mike. He doesn’t need it right now!

September 14, 2011

there you are!

Meet John.

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.

August 23, 2011

4.26.03

I can never get very far
away from that day
or the breath-taking panic

because everyday
I wake up still,

still.

August 21, 2011

rewind. playback.


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.

April 26, 2011

affirmation for my eighth year.


I am strong enough to handle it for another year.

Even when I doubt myself,
I am strong.

That part I can never let myself forget,
even when it would be easy to.

Onto year number eight.

Let’s get it!

January 27, 2011

RIP Jake.

A friend died today. Far too young and far too quietly.

Jake, also in a wheelchair from a cervical spinal cord injury, passed away this morning after suffering a stroke from a blood clot that traveled to his brain stem, causing a stroke.

He hated being paralyzed. Not that anyone ever likes it, but Jake had such a disdain and nowhere to direct it. It makes my heart weak and scares me to know that it was his injury ultimately that killed him. I think, though, that he wouldn’t have it any other way. Finally paralysis/spinal cord injury/complications can be to blame. It’s their fault he isn’t here.

He had come so far and worked so hard to get movement in his arms back. He wasn’t satisfied and even up until yesterday, he was working. That determination was what drove him most of the time I think. It’s also what frustrated him too. Sometimes our bodies just don’t do what we tell them to, no matter how hard we try.

Last I talked to him, he seemed in good spirits, and we had talked about hanging out as soon as the snow had disappeared. We were kind of like the wheelchair duo around here.

I hope he is up there running and jumping and skipping and dancing and laughing. Doing all the things he so badly wanted to do. I hope he finds the peace he had been missing since his injury. I hope he has the happiness.

Even though we didn’t always agree (sports teams, politics, some handicap issues), he was my friend and I will miss him. It makes me so sad to know that he is gone, just like that.

Just like that. I hate that part.

December 23, 2010

tis the season.

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.

December 11, 2010

plain and simple.


How I wish everything was simple
How I wish everything didn’t end in lies
How I wish I could just keep turning back time
How I wish I could be more like me
When I didn’t have to worry about myself
How I wish I could just keep turning back time


“Don’t Cry” by Olivia Broadfield

I haven’t cried in a long time. Not about being paralyzed anyway. There seems to be times when paralysis and everything that goes with it gets me down, for a week or sometimes a little longer. It’s all I can think about. All the things I miss, all the things I can’t do, all the things I wish were different. It sort of consumes me like exhaustion, and it makes my heart weak and sensitive. Once every few months, I cry so hard at night from frustration and anger that it hurts. It builds and builds until crying is the only way to get it out of me.

And then there are other times, like now, that I’m not concerned much with any of that. I do what I want when I want, and I do it with a smile on my face, enjoying every single minute of every day. I forget sometimes in those small dips of depression that I really, really do have a pretty fantastic life. One definitely worth living to its fullest.

I am happy. And I am because I said I would be. I told myself from the very beginning, when I was the one trying to cheer everyone else up, that this would not make my life any less happy. I just have to remind myself every so often.

So here is to another few months of happiness and no tears. And jingle bells and twinkly lights!

October 9, 2010

the search is over.

And a new van will be mine next week. After a stroke of luck (extremely good luck), I found one in town, and for a super cheap price for what the van is actually worth. I swear, you’d think this thing is brand new. Only 13,000 miles and smells super clean and new. I went and talked to the man who owns it. His wife died around a year ago, and he no longer needs such an adapted van. Apparently I make an impression or something because he is selling is to me for what a dealership considers wholesale price.

Some people as young as me who are handicapped don’t want to drive a van, but frankly I don’t care either way. It’s easy to get in and go, do what I want by myself, get wherever I want to go. Who cares if i look like a soccer mom? I sure don’t.

I’ll get pics of it as soon as I can. We’ll probably pick it up Monday or Tuesday, and then I have to get tags, insurance, and all that crap. Then I have to get an EZ Lock installed so I can drive it.

So excited! Check another goal off the list.

March 8, 2010

my injury. (very long + pictures)

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.


This is the intersection where it happened. The stop sign is the one we missed.

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.


My parents and I plus Cory McClenthan, the drag racer, at Craig Hospital’s Motor Sports Day.

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.

October 23, 2008

lullabies and fairytales.

In the past two days, more baby talk has come up than you’d ever imagine.

First, Lindsay. She’s pregnant. Yes, I know! My own niece having a baby before me. Unbelievable, but amazingly exciting. It seems hard to grasp at first, that she is so young (18 is young to me), but I know, and everyone else knows too, that she is going to be a great mother. She has a lot of support and her baby is going to have plenty of cousins to keep him or her busy and happy.

Then I was reading the blog of a beautiful woman who has inspired me in many ways, and she and her husband are adopting a baby. They have been trying for their own for quite some time, but without success, they are adopting. Her writing of meeting the adopt-er parents literally brought me to tears. I think that it’s a big step: adoption. For all involved. There are many ways that adoption reminds me of a marriage. You are combining families. Even if they don’t stay in touch and never see each other again, at the wedding, they are all one family. It’s a beautiful thing. I know that this couple is giving her and her husband something, someone, that they will never be able to thank them for enough.

On CareCure, a spinal cord injury site I frequent, a thread was posted about the desire to have children. I know that an injury such as mine is such a life-changing and devastating thing to most who experience it, that if they haven’t had children, they seriously question whether they should. I am NOT one of those people. I am not going to give up the dream that I have of my own children, and I am not going to feel guilty about wanting them either. I think that some view it as somehow depriving a child of a normal life if one parent (or maybe in some cases, both) is disabled, liking cheating them of normalcy. This injury won’t ruin their lives because I haven’t let it ruin mine. I can have kids, and I plan on it. They are gonna be beautiful little squirts too. Hah.

All this baby talk doesn’t have me ready though, that’s for sure. At this very point in my life, I can’t imagine having one. I have a lot to do before that point comes, and when it does, then I’ll be ready. I’m not worrying until then.

And I’ll continue to spoil everyone else’s.

April 11, 2008

He said it just right.

I’m reading Chuck Palahniuk’s Invisible Monsters and just found something that he wrote very interesting.

“Who I was before the accident is just a story now. Everything before now, before now, is just a story I carry around. I guess that would apply to anybody in the world. What I need is a new story about who I am.”

I have felt this way before, and never could come up with the words to describe it. But this sums it up. In exactly 2 weeks from tonight, I’ll be paralyzed for 5 years, and I am still trying to figure out what and who I have become. I am a lot closer to it than I was even last year, and who knows where I’ll be next year. I thnk learning to live life in the present, while not dwelling on the things I miss, is becoming easier than I thought.