This week, leading up to #giveRARE Day on March 3, we are featuring stories of folks living with a rare disease. Today's inspiring post is from Frederick Seitz. Come back daily until Tuesday for real life stories of people who individually may be rare, but are creating a strong community together.
In 1992 just hours after I came into this world, the doctors left my parents with the same message every time they gave them an update on my progress. There was very little chance I would make it through to the next morning. The doctors questioned the quality of life I would have if I survived. Little did they know a lifetime journey had already begun.
Ever since I was a kid, I knew I was different from everyone else. I have had my share of experiencing bullying and teasing during grade school many years ago. Along with that, people would stare at me in public and schoolchildren would either run away from me on playgrounds or just stare, not knowing how to react to someone their own age who looked uniquely different. It took a while to get used to as a kid and I developed a strong mind before most of my peers because I knew that when I got older, my parents wouldn’t be everywhere with me. I have also experienced discrimination within the education system especially in grade school. I was finally placed into my hometown district after 4th grade and everything changed past that point.
Around the time I went into my teenage years, I learned to simply not care what people thought of me and I focused on overcoming great adversity. Some of that included the surgeries throughout my life, some intense and some modest, and dealing with people who got in my way of building my own path to success. Luckily, there were good people along my journey who helped me in ways I couldn’t possibly repay them. They’re the reason where I am today.
From that point when I was placed into my home district, my academic success accelerated rapidly well into high school and college. I built many friendships and significant connections. My life transformed because I took control of my own destiny when I was only 10 years old. It wasn’t clear at first but looking back, I know why I did not leave this world. I am living on borrowed time for a purpose. I don’t know what your spiritual belief is but I know it is God’s will for me to be the master of my own journey, my own destiny. Life is a road and the destination is only up to whose road it is. I do not believe there is such a thing as fate. You cannot control what obstacles you will face but you can prepare if you can see them soon enough. It is your steering wheel. No matter how impossible it seems, there is always a detour. Absolutely no one except yourself can stop you. There is always a way so go find it. A perfect example to resonate this idea is this quotation from one of my role models, Steve Jobs:
“Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma – which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”
That really sums it all up.
Living with Goldenhar Syndrome does make me rare because it is a rare condition but the force of determination my soul contains is more unique and unprecedented. That is what set me apart from the others. My body is a physical vessel that’s just different from most people. I am still here and looking forward to what’s coming next on the road.