On March 14th of 2011, I had a stroke. On that day, I was gleaning a cornfield for a neighbor. I had a massive headache that just wasn’t seeming to go away. But I didn’t know what it was attributed to, so I just went home with my work. I assume that it would be like any other headache and just go away in a matter of hours. Unfortunately, I was very wrong. I collapsed in the field and couldn’t get up. I tried telling some of my friends what was going on but I couldn’t speak. It was infuriating not being able to speak or move or take care of myself.
Eventually one of my friends went and got her mother. Then, action was taken quickly as my parents were called and arrived in a matter of minutes. They took me to the local hospital where they ran dozens of tests. Eventually the doctors determined that I needed to be taken to a larger hospital with more capabilities. So, they took me down to Kansas City to the Children’s Hospital there. Once I got there they continued to run tests and finally determined that I had a severe stroke. The stroke was caused by a condition called fibromuscular dysplasia, or FMD for short. FMD happens in the narrowing of arteries, making it easier for clots to get caught in the arteries, and making it significantly easier to have a stroke, often leading to death among those who have FMD. There are only 16 people in the world with my type of FMD. The research pool was so small that there wasn’t any research. So, there I was living in a situation that doesn’t really have any hope. And I didn’t know what to do. So, I just lived. I lived without purpose. Just doing the things that I was asked to do without questioning.
Recovery did not prove to be an easy process; lots of therapy, lots of injections, lots of trying to make me more, lots of experimental treatments that we didn’t know if they would work or not, but we were just willing to try them to give me a more independent future. All of this was going on, so I didn’t have time to think about the inevitable. Which looking back I guess it’s a good thing.
A while after that my family decided that the best thing that we could do was move to Utah. It was for various reasons such as job security, a fresh start for me, and a fresh start for my siblings, because this had not been easy on them in any sort of way.
Living in a new place is not easy for anyone and certainly not for me. From transitioning to the new school, to all my medical concerns and transferring my medical records across state boundaries, none of it was easy. I got new doctors. One of my new doctors thought that the diagnosis that was given to me in Missouri was wrong. She thought that it didn’t fully add up. So, she decided to take me in for more testing just to see if she could find anything new. I, being my cynical self, thought that despite the research that she did on me and my story, she wouldn’t find anything. However, I was so wrong. Not only did she find stuff, she found out I did not have fibromuscular dysplasia. That all my worrying had been for nothing. That I could be a kid and not have to stress about death.
That was about 4 years ago. And in those 4 years I have experienced so much. I am so grateful to all the doctors and therapists who have put so much time into me and my case. I am grateful for my parents and my family and their constant support. And most of all I’ve learned how to be happy again, how to have a purpose, how to be grateful.
I’ve asked my parents how they felt about the rescinding of the diagnosis and they both agreed that they feel wonderful that I have had such great doctors who put in so much time and effort into me, and that I get to live my life, without a set length like it had before. My parents say that it was through the doctors and a bit of a miracle that I’m still here today.