Hello everyone! My name is Marie. For the first part of my life I was constantly answering the question, “Who are you?” You see, as a child, my family moved very often due to my father’s job. Every year we packed up the house, moved to a different town, and I had to go through the paces of forming relationships with strangers at a brand new school. Answering the question, “Who are you?” everywhere I went became commonplace. I became used to nobody knowing my name. I learned to adapt and overcome. It made me appreciate my siblings and my family, because many times that is all we had. It made me learn to seek out new adventures, and broaden my horizons rather than stay in my little bubble of safety like I see so many of the youth of today. I learned how to step out and meet new people, and made friends in every town I lived. Then each year I said my goodbye’s, packed up my belongings, and headed off for the next adventure. I believe that these experiences helped to prepare me for the journey that lay ahead.
As my siblings and I got older my father decided to take a different position within his company, and that meant we were able to stay in one place for eight whole years. I was able to put down some roots, and complete Jr. and Sr. High in the same school system. I thought it was going to be the best years of my life. I was finally able to make some friends, and keep them. We wouldn’t have to live out of boxes, hoard our bubble wrap, and we even had a chance to actually buy our own house! Finally, I would no longer have to constantly answer the question, “Who are you?”. People would actually know me.
Then something strange happened. I began to feel… different. Something wasn’t right inside me, and I couldn’t quite explain it. I had been involved in sports, running track and cross country, and was happy hanging out with my group of friends. However, soon after high school began I started feeling as if my entire body was shutting down. I wasn’t myself. I began asking myself, “Who am I?” I had gone my entire life to this point constantly telling everyone else who I was, and when I finally had settled down somewhere and began to fit in my body decided to start attacking me. What was going on? Who was this person? I was in pain all the time, the fatigue was debilitating, the brain fog was depressing, and nobody could help me. Do you know how difficult it is to be a teenage girl trying to figure out where you belong in this crazy world when your body starts telling you it no longer wants to follow your directions? Suddenly you no longer have control of anything. Your sports career is over, your friends stop inviting you out, you stop enjoying life because everything causes you pain and nobody (not even you) understands what is going on. And to top it all off, nobody believes you!
I went to doctor after doctor and every time it was something different. “You must be depressed”, “Maybe it’s her thyroid”, “Let’s check for Lyme”. MRIs, CT Scans, blood work, x-rays, more MRIs, specialists, and on and on. It was a never ending cycle of dead ends all ending with one common answer- “Well, you don’t look sick. You are too young to be feeling this way. You must be depressed. Go to a psychiatrist.” You know, after you are told you are “Crazy” or “making it up” so many times you begin to believe it. I started to wonder- Was I making it up? Was it all in my head?
For 15 years I fought with doctors, employers, teachers, classmates, strangers, friends, family members, and even myself trying to prove that what I was experiencing was real. For 15 years I tried to answer the question, “Who am I”. I lost a piece of my identity that I was so sure about as a child. I didn’t know where I belonged. I couldn’t keep up in the able-bodied world, but I didn’t “Fit In” in the disabled world either. Where did I belong? Who was I? I had lost hope. I had given up. After a while, I stopped searching for answers.
Finally, after encouragement from my husband, I tried one last time to find an answer. I agreed to see a specialist who ultimately changed my life. At the age of 31, I finally received my answer. It took 15 years of searching, 15 years of heartache, 15 years of pain to find out what had been plaguing me all those years. Mitochondrial Disease. A veil had been lifted. It felt as if a thousand pounds had been shed from me instantly. Not because there is a cure, because there is not. Not because I have found a grand solution to all of my pain and suffering, because I haven’t. But because I now know the truth. Knowledge is power, and I can now answer the question, “Who am I?” Fixing everything doesn’t make life instantly better. You will always have struggles to overcome, but having the knowledge and power to face your struggles head on can change your life. Who am I? I am a strong woman, married to a wonderful man who supports me wholeheartedly, and together we live a mighty fine life despite Mitochondrial Disease. Who are you?