Guest Editorial |

Guest Editorial

Editor’s note: The following letter was given to us by Rachel Neuberger. It was written to her diabled son, Chase, who suffers from juvenile rheumatoid arthritis, by Stephani Victor, Olympic and World Champion disabled skier who is a Grand Marshal in this year’s Fourth of July parade. It is printed here with permission from all parties.

November 23, 2005

Dear Chase,

I was hoping to get to meet you today. I am a friend of your grandmother’s and she told me some wonderful things about you. I understand that today is not a good day for us to meet, so I thought I might write to you and introduce myself. My name is Stephani Victor, I live here in Park City and I am a member of the U.S. Disabled Ski Team. Why the disabled team you might ask? Well, here goes my story. About 10 years ago I was living in California, I had just graduated from film school and I was working as an actress. Just before Christmas, I went over to a friend’s house to visit. We were standing behind his vehicle in the driveway, loading some things into the trunk of his car. The street was under construction and an out-of-control car swerved in the construction zone, blew out his tires and came up into the driveway. His car crushed me into the back of my friend’s car and I was dragged and pinned between the two cars until they came to a stop. I was lying on the ground in excruciating pain and like the kid I used to be on the soccer field I tried to jump up. I could not get up; my lets had been so badly crushed and broken they were practically severed. As I lay there, I realized I would probably die. I knew this feeling from my childhood; I had a near-death experience when I was nine years old. A powerful but peaceful force inside of me that wanted to live overtook me. As I closed my eyes, I saw and felt all of the people in my life I loved and cared for. When they say your life flashes before your eyes, it’s true, and what I saw was not only the wonderful life I had lived but the future wonderful life I wanted to create.

I was taken to the hospital and into surgery; luckily, before I went into surgery I saw my mom and my best friend Meredith for a brief moment. I called out to them that I wanted to live and that I loved them. At that moment I was not sure if I was trying to convince them or myself. I was in surgery for over eight hours. I arrested on the operating table three times. The doctors realized that the only way I could live was if they amputated both of my legs. When I woke up after the surgery I could still feel my legs, I did not know they were gone. My mother told me the hardest thing she ever had to do was tell her daughter that her legs were gone. What I soon came to realize was that I had asked God for my life, and I had been given it. Had I known I would lose my legs, I probably would have asked for that, too! The gift of my life for me was a message from God. I was supposed to live. I did not get to choose how I would live, just like you did not choose to have this disease. As I lay in the hospital, the doctors painted a very grim picture of my life. "You will never walk again, you will never do this and that and so on." I chose not to listen. In fact, I tuned them out altogether. I made up my mind I would walk again, with prosthetic legs or something. I did not know how I would do anything anymore but I was determined to find out. Over the course of the next three years I had 11 reconstructive surgeries. I spent a great amount of time in the hospital in excruciating pain, physical pain. The emotional pain I could, for the most part, manage. I was always a happy, upbeat person and I was fortunate enough to have friends and family around me who loved me unconditionally and joined me in the creative journey of figuring out how to recreate my life, a life without legs.

First, you have to get around. I mean the simple task of getting out of bed and going to the bathroom became an unthinkable challenge. Even though I tried to imagine myself walking with prosthetic legs, it’s not like I could just go to Wal-Mart, buy a pair and snap them on. What should I do in the meantime? "Use a wheelchair," the doctors said and they told me to get used to it. I DID NOT want to use a wheelchair how uncool! But I wanted to get around, so I had the opportunity to make a decision, a choice I would CHOOSE to use a wheelchair, just temporarily until my prosthetic legs were ready and then I would be done with it. As I mentioned, with all those surgeries, I spent more time in the wheelchair than I wanted, but I got good at it! I could do wheelies, go down stairs, jump off curbs and play sports. I made my wheelchair COOL! My physical therapists taught me many tricks and I could get around just about everywhere. I also made friends with other people who use wheelchairs and they taught me how to do things like ride up and down the escalator in my wheelchair an advanced skill, highly useful and it looks really COOL! I even traveled in my wheelchair, by myself, on an airplane to Hawaii to go ocean kayaking and snorkeling. My best friend, Meredith (who is still my best friend) took scuba diving lessons with me and we got certified to dive!

Then the prosthetic legs were ready for me and I spent months, even years, trying to make them work. Guess what? I proved the doctors wrong I did walk again and pretty good for a person who lost both legs above the knee. But guess what else? The doctors were right, too I was more efficient using my wheelchair. Doctors need to learn better tactics at giving patients difficult news. The pain that I felt walking in my prosthesis was so great I could not see the sense in wearing them when I could get around so freely (and cool) in my chair. Another choice I made, to use a wheelchair It’s fast, efficient and pain free and it gets me everywhere I want to go.

My wheelchair even brought me to Park City. I went to the National Ability Center to sign up for my first skiing lesson in a mono-ski. It was so much fun! I was riding the chair lift and flying down the runs just like I did when I was a stand-up skier! I completely forget I use a wheelchair when I am skiing. So much so, that when I fell over, I tried to get out of the ski so I could stand up to get back in it. Then I realized I can’t stand up, I don’t have legs! So many great things have happened in my life since I lost my legs. I trained really hard with my coach and got good enough at skiing to compete in the Olympics and I won the World Championships! I travel all over the world competing. Everything is a choice. We all have to choose to make the most of our lives. Yes, it is a greater challenge with compromised mobility and pain. Physical pain can be so intense at times that it confuses our heart and spirit into thinking we do not have anything to live for, but that just is not true! It is important that your doctors help you find ways to ease the pain of your illness so you can go to physical therapy, build up your strength and get back out there! The snow should fall any minute and when it does you have the perfect opportunity to choose to take a ski lesson and discover that there is life, a great life out there for you, even if you have to use a wheelchair to get there! A wheelchair is only a tool, a means of transportation. Yes, for those of us who use them, we would all prefer to walk, but we must give thanks for the technology that allows us to be free.

I do not presume to know how you feel or what you are going through. I have my experience and you have yours. All I can tell you is that if I have learned anything, we are all here on this Earth for a reason. Being alive is a wonderful opportunity to feel and express and experience many things. Some people, the lucky ones, learn to appreciate their lives and they take the good and the bad and embrace it as an opportunity. You have been handed a very difficult challenge, but not one that you cannot overcome. You have everything you need, right now, within your reach to make your life great, enjoyable and fun. Just try it try right now as you read this to think of something you enjoy do you have something in your mind? What is it? Can you go do it? If not, herein lies the challenge this is what will make your life meaningful. You have the choice to figure it out, and invite those around you to help you make the most of every minute. And when you do figure it out, you will have a wonderful feeling of accomplishment.

Your grandmother is a really cool lady. She loves you and cares about you a lot. When I told her how much fun I have skiing and being on the U.S. Ski Team, she wanted that kind of fun for you, too. You deserve it. You deserve it! You deserve to have fun you have been through a lot! The good news is you live right in Park City, just minutes from the National Ability Center and the best ski areas in the world. There is a lot you CAN do. There are people like me and people at the Ability Center, who are more than happy to show you how. All you have to do is show up!

Stephani Victor

Slalom World Champion

Park City

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