FAQs: SCI 101

SCI stands for spinal cord injury and most people don’t know much about injuries to the spinal cord unless they have one themselves, are closely related to someone who has one, or are in the medical profession. Most people who injure their spinal cord lose all movement AND sensation from that point down. For example, I broke my neck at the second cervical vertebrae and have now lost function from my neck down. (If you break your neck further down on the spinal cord, your body may only be compromised from the shoulders down, or the chest down. If you break your back, only your legs might be compromised.

I don’t have control of the muscles from my neck down, but I still have full sensation. My sensation isn't exactly normal, and it especially wasn't normal right after my accident. At first my body tingled all over and it felt like pins and needles were touching me everywhere. But as time went on, my sensations began to feel more and more normal as my body slowly came out of spinal shock. I’m really glad that I can still feel, even though that means feeling pain, because most people in my situation either can't feel, or have limited sensation. My sensation might not be 100% normal, but at least I can still feel from head to toe.

Although I can feel pressure and touch, I can’t feel temperature from my neck down. I know when I’m cold and I want a blanket on, or when I’m hot and I want a fan blowing on me, but I can’t sense the temperature of objects touching my skin. (If you touched me with a popsicle I would feel the pressure of the popsicle, but it wouldn’t feel as cold to me as it would to you.)

Something else interesting having to do with my sensation is that I don’t itch anywhere from my neck down. I’m thankful for this because itching on my face and scalp is torture enough since I can’t do anything to relieve the itch.

One downside to having sensation is that there’s a lot of pain that accompanies spinal cord injury, at least for me. It’s a different kind of pain that is hard to describe to someone who has never felt this kind of pain before. It’s called neuropathic pain, and it’s a burning pain that feels burning hot and icy cold at the same time. I feel the pain in my hands, bottom, lower legs and feet, although, it’s different for different people. Some days the pain is so intense that it borders on excruciating. Thankfully, I’m on a couple of medications that really help manage the pain. Every day without pain is a good one!

Another interesting thing having to do with my spinal cord injury is that all of my pain is worse on the left side of my body. It’s strange and I’m not sure why this is, but it’s another quirky thing having to do with spinal cord injury.

How my computer works

I've had a lot of people ask me before how I use my computer since I can't use my hands. It's a good question, so I will take the time to explain how everything works. I have a laptop computer and there are two programs I use to help me be able to navigate around on the computer by myself.

The first is a voice dictation program called Dragon NaturallySpeaking. You train your voice into the computer and then the computer recognizes words and commands when you speak into a microphone that's on a headset you wear. The program doesn't write down everything I dictate perfectly, so when it makes mistakes I have to go back and correct them.

The other thing I use is called a head mouse. A piece of equipment that looks very similar to a web cam attaches to the top of my laptop screen. Then a special infrared sticker (about the size of a hole punch) is stuck to the microphone on my headset. When I move my head around, the head mouse tracks the movements, and that's how I move my mouse. When I have the arrow on the right spot, I say, "mouse click" or "mouse double-click" or I give another appropriate command.

I usually get on my computer every day, and I spend the majority of the day on my computer (up to 10 hours). Lots of people ask me what I do when I'm on my computer. I do lots of things: e-mail, write in my personal journal, blog, Facebook, shop, work on various projects, watch movies, etc.

I'm so grateful for these programs that enable me to be able to use my computer all by myself. It's very liberating to be able to do something by myself, since there are so many things that I can't do or need help doing.

Movie theaters

When I was a little girl I loved going to the movies, although, trips to the movies were few and far between since my family was so large and that meant it was quite expensive. But it was a huge treat when we would go. These sporadic trips started my love of movies and movie theaters.

When I was a teenager I couldn't wait to get a job. Even though you had to be 16 to get a job, I started filling out applications as soon as my sophomore year of high school ended. I applied a couple of places, but I really wanted to work at the movie theater (Wehrenberg's Arnold 14 Cine). A few days after I applied, a manager at the movie theater called me in for an interview. I got the job, but I had to wait to start working until I was 16 (about three weeks away). I was so excited that I got the job, and I wanted to start working ASAP, so I started on my birthday. (I didn't care that it was my birthday; I just wanted to start working!) Here is a picture of the movie theater:

I worked in the concession stand, and I quickly caught on to how everything worked. I loved working, especially at busy times like in the summer and near the holidays when the really big movies would come out. (Like Harry Potter or Lord of the Rings.) The excitement people had was completely contagious. I loved being a part of that feeling!

One of the things I vividly remember when I first started working was how busy the theater would get, especially on the weekends. The lobby would be jampacked full of patrons, but then as soon as the movies started, the lobby would empty out completely, and it would be so quiet.

I truly loved working, and I worked about 30 hours a week through my junior and senior years of high school. I expanded from working in the concession stand to also working in the box office and as an usher. (Ushers are the people who clean up the auditoriums after each show.) When I worked as an usher the first couple of times I was shocked at how absolutely trashed the auditoriums would be on a busy day/night. I couldn't believe that the majority of the people would just leave their trash instead of growing it away on their way out.

I started working as an associate manager when I graduated high school. I loved the new opportunities and responsibilities this brought. A couple of my favorite tasks were making the employee schedule and doing payroll every week, doing the weekly inventory and also hiring new employees.

By November 2003 I had been working at the theater for almost 3 1/2 years, however, I only made $6.90 an hour. I didn't feel like this insultingly low wage adequately compensated me for all that I did, but I stayed at the job because I really loved it and I loved the people I worked with. I'd made many wonderful friends in my years working at the theater. Here is a picture of me working as a manager:

Whenever I go to the movies now I always have nostalgic feelings as I remember the fun years I spent working at the movies. It was my first and only job and I'm so grateful that I had the opportunity to know what it's like to have a job and earn money.

Diaphragm pacer = more adventure

When I was in my car accident, I broke my neck at the second cervical vertebrae, so the break was very close to the top of my spinal column. This meant that I lost control of all of the muscles from my neck down, including the diaphragm muscle in the abdomen that is used to breathe. So after my accident I was put on a ventilator -- a machine that is hooked up to a person's tracheostomy tube (trach) and pumps a breath of air into the person's lungs a certain number of times a minute. (Approximately 12 to 16.)

I was on a ventilator for the first three years after my accident, and I actually never thought I would ever get off of the ventilator. After my accident I heard about Christopher Reeve getting a diaphragm pacer and I knew that I'd like to have one, although I didn't think it would ever be a real possibility for me since they seemed so few and far between. However, I decided to ask my doctor about it anyway to see what she knew about them. She didn't know much, but she did track down and call the doctor who performs the surgery to implant the diaphragm pacer electrodes on the diaphragm.

(A little background history on the diaphragm pacer: Although the technology of diaphragm pacing has been around since the 1970s, Dr. Ray Onders didn't start doing these surgeries until 2000. He developed a method of laparoscopically implanting the electrodes used for pacing on the diaphragm itself instead placing them on the frenic nerve as had previously been done.)

When I first inquired about the diaphragm pacer, Dr. Onders was the only doctor in the world who performed the surgery. He practices medicine in Cleveland, Ohio, so after finding out that he was so far away from me (in St. Louis), I pretty much gave up any hope of ever having this procedure since I really wasn't in any position to travel hundreds of miles.

Mom got a phone call from Dr. Onders a few days after my docter called him to find out some information about the pacer. Mom and Dr. Onders talked for about an hour, discussing what the diaphragm pacer was, how it worked and if I might be a candidate for one. Everything sounded so promising, so we didn't have to think too long before deciding that we were going to do it. It was daunting since we'd never attempted taking a road trip since my accident (and Cleveland was 10 hours away), but getting a diaphragm pacer was too good of an opportunity to pass up, so we started formulating a plan of how to make things work. Two months later we set off on our way to Cleveland.

I had the surgery to implant the electrodes on my diaphragm on November 17, 2006; the third anniversary of my accident. (I thought it was really cool that I was able to have the surgery done on the anniversary of my accident; what a wonderful way to celebrate!) My family and I were taught about the pacer and how I had to slowly condition my diaphragm muscle to be able to withstand pacing for long periods of time. (The diaphragm is a muscle, so it needed to be strengthened and gotten back into shape since I hadn't used it in three years.) The training process is kind of difficult to explain, so to make this long story shorter, I'll just say that everything was extremely successful, and I went from being completely dependent on the ventilator to being on the diaphragm pacer 100% of the time. It only took eight days to completely transition over to the diaphragm pacer which was a record for the female patients at the time. (Although, I'm not sure if it still is not.)

People often ask if I have to go back on a ventilator at night, and the answer is 'no.' I'm on the pacer 100% of the time and have been since getting the pacer in 2006. (Except for one time when I was hospitalized due to complications that I experienced after having surgery to remove kidney stones.)

Now to the part about becoming more adventurous... I wasn't very motivated to leave the house after my accident. I was happy and content and I liked being at home. I didn't like going out in public unless it was absolutely necessary because I felt awkward out in public. I would go to church every week, to my doctors appointments, occasionally to the store or things like that, but I preferred to stay at home because it was my favorite place to be.

After my accident I vowed that I would never go to Wal-Mart or the mall again. To me, that would have been the epitome of torture. I would hate having all of those eyes on me, feeling in the way, having to try to maneuver around tight, overcrowded aisles, all in addition to the thought of running into someone I knew before my accident. But over time I slowly started to venture out and try new things. I was especially nervous the first few times I actually ate in restaurants, rolled through the mall and things like that, but things got better the more I went out. I'm sure that I would've gotten to this more adventurous point eventually, but getting off the ventilator was definitely the catalyst as it made me feel more confident. (I felt more normal looking since there were no longer tubes attaching me a ventilator.)

I mentioned earlier that Christopher Reeve also had a diaphragm pacer. He was the third patient that Dr. Onders did this procedure on, and I was the 42nd. At the time I got this procedure done, Dr. Onders was the only surgeon in the world to perform this surgery. After the diaphragm pacer became FDA approved more and more surgeons started doing this procedure and now there are dozens of surgeons that perform this procedure in more than a dozen facilities all across the United States and Canada. I'm so happy that word of the diaphragm pacer is spreading so that more people like me can have a better quality of life.

Weekend recap

This past weekend was a busy one! Here is a little bit about each day:

Friday -- on Friday evening my mom, my sister Chandra and I went out to dinner to celebrate my mom's birthday. My sister Laura and her husband Brett came along, as well as my mom's friend Paul. We went to O'Charley's; a restaurant that I've never been to, but have always wanted to try. All of the food was really good, but I think my two favorites were an appetizer called Twisted Chips and a yummy piece of chocolate cake for dessert. Although it was Friday night, the restaurant wasn't too crowded, for which I was grateful so that I wasn't the way. (This is a picture of my mom and me that Chandra took before we left for the restaurant.)

Saturday -- I went out for a girls night on Saturday evening with my sister Chandra and a few of our friends. We went to dinner at Red Robin (another restaurant that I've always wanted to try). I'd recently seen a TV commercial for a hamburger that they were selling that I really wanted to try (it was a burger with mozzarella sticks on it). I actually didn't like the burger, but it was still fun to experience a new restaurant. After dinner we went to the movies and saw Fame. I love seeing movies, and this was a fun one.

Sunday -- I didn't have to go to church on Sunday because it was my church's semiannual General Conference broadcast from Salt Lake, so we just watched it on TV. (It's so nice to be able to watch conference in the comfort of my home!) My sister Laura and her husband Brett came over and watched with us. Laura, Brett, Chandra and I played Phase 10 Masters that afternoon, so that was lots of fun. Phase 10 is one of my favorite games! Laura made a carrot cake for my mom's birthday (her favorite) and brought it over for our dinner dessert. (Here's a picture of Mom and her birthday cake.)

Our weekend was busy, but it was a lot of fun too!