Seymour - The road ahead: inspirational stories of open hearts & minds

Part One

Surviving Illness
and Facing Challenges

None of us knows when we or someone we love will be diagnosed with a major illness or be severely injured in an accident. Life is completely unpredictable and people dont know how they will cope or adjust when they face the unexpected. It is hard to imagine the new journey but these stories share a common theme. They show that accepting and never giving up is the definition of a life well lived. Happiness gained by helping others gives us purpose. Purpose gives up hope and love. Living in the moment and appreciating what we have, indeed counting our blessings is key.

Follow Your Dreams

I was an athletic kid and by the time I was age seventeen, I was a top 100 surfer. I knew I wanted to be a professional surfer and I was looking forward to the future. But everything changed on March 25, 1996. It was a beautiful morning and I went surfing just like I did most mornings. Usually, I went by myself but on this day, I was with friends. A wave knocked me back and I hit a sandbar. I couldnt get up and I was lying face down in the water. I called my friends for help but they thought I was just goofing around. Finally, when my best friend came over, I told him he had to keep my head out of the water because I was really hurt and I was going to drown.

I was carried out of the water and a lifeguard put a neck brace on me; I was taken by helicopter to the hospital. The next thing I knew I was strapped into a contraption with tubes in and out of my body. I had a severe spinal cord injury, and I was a quadriplegic.

It was tough at first. I was used to doing whatever I wanted and traveling around the world. Suddenly, I was dependent on others 24/7. I had a choice: I could stay in my wheelchair and feel sorry for myself. Or I could take a more optimistic view and do what I wanted to do with my life. Initially, I was sad and spent some time wondering why this happened to me. I thought that bad things happen to bad people, not someone like me. But somehow, I knew that I had to slow down and think about my life. I almost dropped out of high school but the principal was very supportive and I graduated with my friends. I still think about where I would be if I were still walking. But I cant dwell on what I cant do. I have to focus on what I can do.

I knew that I wanted to get back to surfing. It took about three years because I had to find the right equipment and tools, because no one was helping disabled people surf back then. But once I got back into the water, I thought how good I felt and I knew that I wanted to give this feeling to other people.

That was the beginning of Life Rolls On, but I didnt know that the organization would grow to where it is today. At first, we held one event and that led to more and more events around the country. Now we have about 100 people with various disabilities and 300 volunteers participating at every event. It just grew on its own. We built up a big volunteer base, which makes it a lot easier. We find sponsors to underwrite the events. Its important to find sponsors that will commit to multi-year sponsorships so that the events will be ongoing. I wouldnt want to hold a one-time-only event. We cant grow too fast. We dont have a huge infrastructure and we need to find the right people who are dedicated to the activities. Ive given our playbook to people overseas so they can start similar programs. It wouldnt be fair for them to have to wait for Life Rolls On. Maybe at some point, well partner with them.

Having an injury like mine is an emotional roller coaster, both for the patient and his or her family. I give speeches and I also talk to newly injured people at rehab hospitals. There are many more opportunities now than when I had my accident twenty-one years ago. I know these patients are lost and scared; if I give them a little bit of hope, thats great. I am grateful for the people who visited me in the hospital and gave me hope.

In some ways, the wheelchair makes it easier for me. It is a visible sign of my injury and opens doors because people will ask me how they can help. But there are many people who are suffering whose problems arent obvious but they can still use your help. When you volunteer, youll meet all sorts of people and these experiences can change your life.

The most important message I have for anyone coping with an illness or disability is to follow your own dreams, not those of your friends or parents. You should always have something to look forward to or youll always be stuck in the same place. If you follow your heart and your mind, you can accomplish whatever you want. Figure out what youre passionate about and then everything else will fall in place.

Jesse Billauer, World Champion Quadriplegic Surfer and Life Rolls On Founder & Executive Director/CEO, liferollson.org

Dont Take a Single Second for Granted

My name is Krystal and in 2002, at the age of twenty-two, I survived a twenty-six-hour brain surgery at The Ohio State University Hospital. After going through such a challenge, I have learned not to take a single second for granted. I have learned to keep a balance in my life and to inspire others to do the same. I developed my own website to share my story, my affiliation with the American Brain Tumor Association, and to offer support and awareness to others. This year, 2017, will mark fifteen years of being a survivor!

Krystal Patterson

Making a Difference with My Difference

Born with a purple port wine stain birthmark that covers half of my face, Ive always known what it means to stand out. Growing up, I had to quickly get accustomed to people constantly making comments about my appearance and staring my way. My mom often tried to block me from seeing strangers whose gazes lingered longer than they ought to. Yet, at the age of five, when she couldnt block a strangers stare, I remember her telling me, I know what theyre doing is rude and unkind. But, what if theyre having one of the worst days of their life and you smile at them? Maybe youll be the only one to smile at them today, and maybe youll make a friend. Her response in that situation prepared me for a lifetime of people staring and making comments. This moment helped me prepare for many situations that would come in the future.

Three years ago, someone stole my image on Facebook and turned me into an unkind meme. I was turned into an internet, nameless, spotlight attractionwhich went viral to over 30 million people around the world. They say a picture is worth a thousand words, yet thousands of strangers were adding their fictional thousands of words next to my image. There were thousands of comments, and I found myself reading over 30,000 of them. Strangers around the world came together in unison, agreeing that my beauty was nonexistent, and that Id, better meet a plastic surgeon soon who can fix that.

Processing all that I saw and read, for the first time in my life, I realized how different I must look compared to the majority of society and how misunderstood my condition is. For the first time in my life, I saw myself through the eyes of thousands of strangers, questioning my appearance.

After this happened, I initially had some incredibly dark days. My confidence was depleted, and for every single day for the last three years, I havent forgotten that I look different and I havent forgotten my unique appearance.

Thankfully, I have had amazing friends who support me. Several weeks after going viral, one friend called me with concern. She knew I was struggling, that I was in a dark place. She knew that my struggle, emotions, and the process of healing mattered and were validbut she also knew the importance of keeping me accountable, reminding me of who I was in the moments I forgot. Talking on the phone, she reminded me that I had a choice, At this point you need to decide which Crystal youre going to be. Are you going to be the overcomer Crystal, or the self-pity Crystal? Either is fine, and you get to choose. But as a friend, I need to know so I can better support you. In that moment, my friend couldnt turn the light on for me, but she did help me remember which wall the light switch was on and that I had the power to change my scenery by the flip of a switch.