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~

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/

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~

What am I thankful for this Thanksgiving?

This past week I was reminded that I have a lot to be thankful for, and especially since it is almost Thanksgiving. Out of nowhere I received a letter in the mail announcing that a health professional that I knew for a long time passed away. She was a person who happened to be my nurse for the last 8 years. I am thankful that I had her as my nurse because she always went above and beyond the role of just a nurse, she was a friend! I didn’t find out exactly what happened to her until a couple of days later, and was shocked to hear she had battled cancer for a long time. I didn’t even know she was sick. The last time I saw her was in July when I was having severe and mysterious stomach pains and had already made to 2 trips to the ER with out anyone knowing what was happening to me. She specialized in working with people who have spinal cord injuries, so when I didn’t have a clue what was causing my stomach pains I went to see her because I knew I would be in good hands.

Over the years I have had some great health professionals, but it wasn’t until I moved to Washington State that I found a team who always made me feel like their number one patient. I was amazed at my first appointment how thorough my new doctor and nurse were. I was not just rushed in and out so the doctor and nurse could get to the next patient; I was shown compassion, respect, and received unbelievable care. I thought that at my next appointment they probably wouldn’t even remember me. Well I was wrong! No matter how little my medical issues were or how big, they always worked as a team to try and figure out what was the next move. They made sure that if I didn’t feel comfortable with the outcome of my appointment, I would get a personal follow up email or phone call from one of them. I had never heard of such a thing. My nurse made sure I was taken care of. If my refills on my medications ran out, and I forgot to call ahead, I could always count on my nurse to call in my prescription, no matter how busy she was. Also, if they had a full day of patients, but I called about something serious, they would figure out a way to fit me into the schedule. A couple of times they saw me during their lunch hour. Now that is dedication!

On this Thanksgiving I am reflecting upon how lucky I am to have such great medical professional’s in my life. I have an amazing doctor and am so thankful for the wonderful care I got from the nurse that worked with him for so many years. I will continue to receive medical care from my doctor, but I know the next time I go to an appointment it will probably be really hard. When I get there my nurse of the last 8 years will no longer be there to greet me and ask me how I am doing, it will be her replacement. She loved her job and I know it wasn’t just me that she made feel like her number one patient, she did this with a lot of other people. I also heard from a friend of mine that she kept her illness very quiet and worked right up until a couple of weeks before she passed away. That is how much she loved what she did. She lived for her patients and making sure they got the best care possible. I will never forget her, and will always be thankful she was my nurse!


Tammy Wilber
~Thankful for nurses everywhere!~

Trying to win the war on pain

Over the past 15 years I have struggled with pain and it can be very frustrating. When I wake up, the first 15 minutes of my day are the worst. I even bought a new mattress this year to try to help my body so I would not wake up in so much pain. The mattress helps, but it’s not until I get up move around, and do my morning stretches. Only after I take my muscled relaxers and pain medication will I start to feel better. It is just temporary though because I still have to take medication and stretch throughout the day to help with my pain level.

After I left the rehabilitation hospital I was on all sorts of medications, but after a couple of years I took myself off of them. For about 7 years I didn’t take any medications and it was great. Then everything changed and about 8 years ago I started hearing a strange popping sound in my left hip. I thought it was nothing just my body popping like when I crack my knuckles. Well I was wrong. After I had some x-rays taken I found out that my left hip was actually popping in and out of the socket. I have a complete spinal cord injury at the mid-chest level, so I can’t feel the hip, but my body reacts to this pain in other ways. I thought I would be a candidate for surgery, but after going in circles with many doctors around the country, there was no easy solution except to go on muscle relaxers and pain medication.

I have lived with this hip issue for about 8 years now and it continues to get worse. The hip is so bad that I have bone spurs on the top of my femur bone and the hip socket is barely a socket at all. It is just bone rubbing against bone, and the hip after many years is completely dislocated. It has affected how I sit in my wheelchair and my everyday life. If I am in my wheelchair too long I have to get out of it and stretch out a lot. Just recently my right hip has started making the same popping noise that my left hip did when it first started sliding in and out of the socket. It is hard to explain to people sometimes how I can’t feel the actual hip, but it still makes me have pain. My body will send me signals when I am in pain, such as shooting pains up my back, severe muscle tightness in my back, sweating and sometimes major headaches.

Since I have to take pain medication everyday, I have to deal with the side effects, like drowsiness. I work full-time so I load up on caffeine. People tease me because I drink Red Bull, not because I like it, but it does keeps me alert. Even though I am from Seattle, the Starbuck’s capitol, I am not a coffee drinker so Red Bull gives me my wings. My pain doesn’t stop there; I also have pain in my back from the metal rods and screws that are holding my spine together. That pain always radiates to my neck and I use a natural pain relieving cream to help as an alternative. I found a pain relieving cream that has a nice smell and is better then Icy Hot, so now I don’t have to bother my co-workers with that strange smell Icy Hot gives off. The pain relieving cream is really great, and I have been able to use it on my sore muscle spots in my back and neck. This has helped me to reduce my pain medication. I don’t think people understand that being in pain all the time is actually very tiring. Just dealing with the pain is a pain, there’s no other way to describe it. I have accepted that I will probably have pain the rest of my life, but I will also not let it slow me down. I will continue to look into alternatives because I would love to get off all the medications. I hate taking pills. I also have looked into getting surgery to get a pump implanted that will disperse medication directly into the spinal cord. Life goes on and I will continue to do my stretches, take my meds, make sure that I sit in my wheelchair correctly and go get the occasional massage.

Tammy Wilber
~Waiting for a pain free day~

What do I miss about life before my injury?

In the last couple of months people have asked me what I miss about my life before my injury. The answer is everything! How could I not miss things, it changed everything about how I thought my future would turn out. I miss not being able to just get up and go. I can still get up and go, but it is more like get up and in a little while I will go. If you add all the transfers I have to do in and out of my wheelchair and extra personal care, it adds time to my day. I am not trying to be negative just honest because it is the truth. I wasn’t born with a disability, I sustained one when I was 17 years old. I miss things that we all take for granted when we are used to having it. When you all of a sudden wake up one day and realize you can’t walk it is life changing. I missed out on my senior year of high school. I missed out on being co-captain of my soccer team. I missed out on my dream of becoming a nurse, but who knows even if that would have happened. I was young and could not predict how my future was going to turn out, and no one else can either.

My disability impacted so many aspects of my life, and something that I miss the most is being able to talk to someone eye to eye. It is hard to carry on a conversation with someone when they are a lot taller. I miss my family because I chose to move away from where I grew up to get away from the snowy winters. I miss the friends I grew up with and seeing them now having kids. I miss the fact that it is not as easy for me to just have a baby. I know I can have a baby and have thought about it a lot, but my body has already been through so much. That is why I would love to adopt a child someday. I miss being able to get to know someone easily without having the conversation always turn to my disability. I miss just being in the crowd and not always being looked at because of my wheelchair. I miss not being able to feel my legs. So here are some answers to the question people have asked me about what I miss about my life before I was injured. Now let me tell you what I have gained because of my injury.

Being injured at 17 years old, I was already in a transition period in life and not settled into college, marriage, children or a career. I could plan the rest of my life around my disability. When someone sustains an injury later in life the results have not always been good. Unfortunately, I have seen these injuries cause divorce, or a disruption in their careers. I have also seen many good things come out of it as well because when something traumatic happens it can bring family and friends closer together. After my car accident I really found out who my true friends were. My life is still not as I imagined it would be, but at 32 years old I think that is normal. Disability or not, I think I can still relate to many women that don’t have a disability. There is such thing as a biological time clock and I have felt mine ticking. If marriage and kids are in my future that is great, but I will not plan my life around it and I will not settle. If it doesn’t happen, it doesn’t happen. What I will do instead is live my life now and not stress about the future. That is one thing I am not sure I would have ever learned before I was injured. I can really appreciate the saying in life, “Don’t forget to stop and smell the roses!” The life lessons that my injury has taught me is to live for today, enjoy what you have because you never know what might happen tomorrow.

Tammy Wilber
~Remembering to stop and smell the roses~

Veteran's Day - A day to remember and honor our heroes!

Veteran's Day was not a day that meant much to me personally until I started meeting veterans coming back from Iraq. I was surprised to find out that the amount deaths because of the war in Iraq was 4193 troops. On this day I want to remember all of those men and women that have put their lives on the line to serve our country.

Since I use a wheelchair, I often meet veterans who have served in the military, and ended up with devastating injuries. Their lives will forever be changed, in a way I will never be able to relate to. Recently, I met a young guy who served 2 tours of duty in Iraq, and because of an explosion, he lost both legs, and his left arm. He can walk with prosthetic legs, but uses a power wheelchair to get around for most of his mobility. I have seen him in some magazines and read a couple of articles about him, but to meet him in person was a totally different experience. I only spent a few minutes talking with him but, all I could think about in the back of my mind was how young he was! Even though I am sure he has been through a lot in the past few years, he seems to have a great attitude. He has been traveling around and sharing his story with people all over the country, and visiting with veterans injured in the war. In a couple of weeks I will get a chance to hear his story in person and am really looking forward to it.

A couple of months ago, I was invited to an event hosted by the Northwest Paralyzed Veterans Association here in Seattle, WA. There I was the only girl in a wheelchair, not a veteran, and surrounded by 20 plus veterans that had flown in from all over the country. They were here in Seattle to participate in an annual Trapshoot event hosted by the Northwest PVA. It gave me a good chance to spend sometime with some local veterans and others from around the country. I was really impressed with the support and respect they all have for each other. I can tell that there is a very special and unique camaraderie among veterans, which is very understandable, since they can relate to each other. I am glad to have spent time getting to know them and I look forward to attending more of their events in the future.

So on this Veteran's Day, I will honor and respect so many brave men and women who have put their lives on the line, and remember those who are no longer with us.

To learn more about the Paralyzed Veterans of America organization visit their website: http://www.pva.org/


Tammy Wilber
~Remembering America’s Heroes~