Tuesday, December 9, 2008

Feeling left behind…

Does anyone ever feel left behind? Do you ever feel like your disability interrupted your life? Sometimes it is hard not to feel that way. Although my disability has taken me on a completely different journey in life, I have often felt left behind and left out. When I was injured at age 17, I graduated high school on time with my class, but didn’t rush off to college. The year after high school I went to the Shriner’s Hospital in Philadelphia, PA and participated in a research program. It was like I went off to college, except I went to a hospital for 6 months. The rest of my friends went off to college, but instead at the hospital I was surrounded by patients, doctors, therapists and nurses.

I did attend college the next year at the University of New Hampshire and met some really great people. This was the first time I had to try to make new friends as a person with a disability. I got to know some nice girls in my dorm, but I found myself going home a lot because I was still trying to figure out how to fit in. In winter, college was a challenge, and the snow kept me from attending classes on the campus. It was hard, so my sophomore year I did a one year exchange program with Florida State University. Instead of going abroad, I got to go to Florida State in Tallahassee, and only had to pay for room and board. I came back to New Hampshire and dropped out of college because I still couldn’t deal with the snow. I ended up moving to Miami and transferred to Florida International University. The warm weather and accessibility of Florida was good for me. I never thought that weather would play a factor into deciding where I lived. So, a couple of years living in nice weather was great, but I missed my family. I have often thought about moving back to New Hampshire to be with my friends and family, but one thing led to another and I moved to Seattle in the year 2000.

I met a really nice guy and that is what brought me to Seattle. Once I moved here I started a new life, got a job, new friends and a new relationship. When I decided to move to Seattle, it was mostly because of the relationship I was in, but I also loved Seattle because it reminded me of New England. I joke that instead of dealing with the snow, I just traded it in for rain. Some of these major life decisions I have made, have been partially due to the fact that I have a disability, but other things that have influenced my choices too. I wonder if I would have ever left New Hampshire if I didn’t have my disability. Many of the people I grew up with still live around the New England area.

So many people I went to high school with never really saw how my life has turned out. After I had my accident I didn’t get a chance to see a lot of people because I only went to school a couple of hours a day in my senior year. In fact, I think a lot of people from high school still have the image of me right after I got out of the hospital and that is not how I wanted people to remember me. I looked terrible after my accident, not only was I in a wheelchair, but I had lost a lot of my hair because of an allergic reaction to medication. When I went to my 10 year class reunion a few years ago, it was the first time many people saw me, and I looked a lot like the person they knew before I was in a wheelchair, and it was great! Through Facebook I have reconnected with many people that I went to high school with, but I still feel left behind. Although, it has been a great way to reconnect with everyone it is hard. When I look at the photos of their lives, I see what I don’t have. If I didn’t have a disability- would I have been in those photos with them?

I will be honest; I still have those moments when I wonder how my life would have been different if my accident never happened. Would I be married with kids and living near my family? These are questions that will never be answered and I don’t want to dwell on them either. Each day I am just glad to just be here because July 18, 1993 could have been a day that ended up much worse. Instead, my disability has given me a gift in so many ways. I can’t explain it all, but at 32 years old, despite having a disability, I can’t help wonder will I still have what they have?

Tammy Wilber
~Feeling left behind, but that’s just fine~

Wednesday, December 3, 2008

What we can learn from children with disabilities

I always find it interesting how some people describe their disabilities. When people ask me what my disability is, I usually just say my legs are paralyzed from a car accident. Depending on the situation, I may go into further detail that my injury is a complete spinal cord injury at the thoracic 5th and 6th vertebrae. It is not only how you describe your disability, it is how you view it. Some adults I know are proud to have a disability, while others are maybe embarrassed about their disability. Everyone is different, but kids are another story.

I stumbled across an ad for a children’s hospital and it was interesting to hear what the kids had to say about their disabilities. There was a 10 year old girl with Cerebral Palsy in the ad who spoke very proudly about her disability and I was very touched by what she said, because I agree with her statement. Here is what she said:

“I’m different in my legs - Not my mind! There is nothing different about me inside - it’s just my outside appearance.”

This statement is very true, and to hear it from a 10 year old little girl just says it all. Here is a girl who was born with a disability and she already knows that – you shouldn’t judge a book by its cover!

In the interview she talked about how she always thanks other children when they ask her why she has to use a wheelchair. She wants to share with other children so they will be comfortable around her. As an adult, I get tired of explaining my disability, but I know people are just curious. It reminds me that no matter what age you are, we all need to have patience with people and educate them. If people with disabilities don’t take the time to educate society about our disabilities, then we can’t get mad if we don’t feel accepted. Next time I run into someone that asks me about my disability, maybe I should thank them for asking too, and explain - that I am also just different in my legs and not my mind!

Tammy Wilber
~I’m the same person, just sitting down!~

Resources for kids with disabilities:
Here is a great magazine for kids with disabilities: http://www.kidsonwheels.cc/
Here is a great book I heard called, Arnie and the New Kid by Nancy Carlson: http://www.nancycarlson.com/

Tuesday, December 2, 2008

Traveling Tips: Protecting your skin on long road trips in the car

This past Thanksgiving weekend I got in my car, as many other millions of people did, and headed out on a 3 hour road trip. One thing that I need to think about now, when I travel is how to make my trip as comfortable as possible. The car that I drive is a 2003 Saturn Ion, which is a great car because it is easy for me to get my wheelchair in and out of it, but the driver’s seat has a very hard surface. I often get uncomfortable after driving for about an hour because the car seat is not custom fit to my body, as my wheelchair cushion is. For example, I am always pressure mapped for a wheelchair cushion. I have to remember that if I spend long hours driving in my car, I also have to protect my skin so I don’t get pressure sores.

Over the past 15 years since I have been paralyzed with no feeling from the mid-chest down, my body and muscle mass has changed. I am amazed at how much muscle I still have in my legs, but over the past few years I have noticed more atrophy, especially on my backside. The bony areas on my butt which are called the ITs (Ischial Tuberosities) are more prominent now. I used to be able to travel in the car for long periods of time without worrying too much about pressure on my backside, but I now take the time to do pressure releases, stretch out and take breaks.

For this trip, I decided to make some adaptations to my driver’s seat, to help accommodate my comfort level and alleviate pressure on my back and butt. I put a car seat cover on the driver’s seat, and added a cushion and lumbar support. This way the lumbar support and cushion would stay in place underneath the car seat cover and if needed, I could adjust them. I had tried in the past to add other adaptations to the car seat, but the supports would slide around. These two adaptations really made quite a difference on my 3 hour car ride. The lumbar support helped me sit up straighter and the cushion helped protect my skin from sitting too long. When I got to my destination I wasn’t in a lot of pain and felt pretty good.

My return trip home, due to heavy holiday traffic, turned my 3 hour ride into 6 hours. Due to the fact that I took the cushion out of the car seat cover and used it where I was staying for other needs, I forgot it on the way back. I noticed a huge difference in my pain level without the seat cushion. I did some pressure releases and readjusted myself, but it wasn’t working. I could tell that I was putting a lot of extra pressure on my butt and knew I might have put myself at risk for a pressure sore. Once I got home I checked my skin and I was right, I had a red spot which looked irritated.

It has been a couple of days now and the red spot is a little better, but I am keeping an eye on it. I realize that as time passes my body is going to keep changing, my muscles may continue to atrophy, and it is my responsibility to make sure I check my skin. I have been very lucky over the years and have only had one minor pressure sore, but it still took quite a few weeks of bed rest to heal. I take my skin issues very seriously, because I have friends with spinal cord injuries that have been in bed up to a year because of a sore. I don’t want that to happen to me. Car seats are not designed to accommodate disabilities, so learn from me and take precautions to protect your skin while driving.

Tammy Wilber
~Driving and Sitting Safely~