I was 23 years old and about halfway through undergraduate school when I realized I was seeing double vision. I made an appointment with an optometrist in October 2008. Little did I know this appointment would be the first of many and the beginning of my journey.
I was mis-diagnosed and treated for an autoimmune disease, Myasthenia Gravis, for two and a half years before being properly diagnosed. I saw my health deteriorate and I felt completely out of control over my body. After having a major surgery for the wrong disease, I was told my symptoms had not improved. My neurologist stated she believed I may have a muscular dystrophy called Mitochondrial Myopathy. I was sick and tired of being sick and tired. My immediate response was, “What do I have to do for that?” Like knives cutting my heart, I heard “Nothing.” There is no treatment or cure for Mitochondrial diseases.
It is not an easy process to learn a new you. A muscle biopsy confirmed I have a Mitochondrial disease called Single-Large Scale mtDNA Deletion. Essentially, my body does not produce enough energy due to the mutated mitochondrial DNA. Through the grace of God, my husband Mike, my mother and grandmother’s prayers, my family, and friends, not only did I have more fight left in me, I came back stronger and clearer than ever. I finished undergraduate school, I got accepted to graduate school in Chicago, Mike and I got engaged, we moved to Chicago from San Antonio, we got married, and I received a master’s degree in Clinical Psychology. I am now halfway through a doctoral program for clinical psychology. I want to help others who struggle with mental illness due to a physical condition. I truly believe my journey serves as a guide to living out this purpose.
I live with chronic pain and fatigue daily. I have great days and bad days, but the frustrating part is that every day and every moment in a day is unpredictable. I have my moments where my thoughts are drowning in fear, but I’ve learned to allow myself to feel it and make the best with what I have.
One of my saving graces is living in Oak Park. When my Mike and I were looking for a place to purchase our first home, we knew we needed a place that would be accommodating to my needs. We fell in love with Oak Park and have called it home for the past two years. At 32 years old, for the first time, I have been able to feel a sense of community. Oak Park has made going out not just fun, but feasible, since I have to be careful with the energy I expend on activities. We are steps from Scoville Park, where you can find me lying on a blanket with a good book and our dog Heidi. Mike and I often have date night at the local restaurants or enjoy a movie at Lake Theatre. I’m most often at coffee shops studying, reading, or writing my blog. Most of my doctors are in Oak Park, making it easier for me to make appointments without a chauffeur. Most of all, I am a part of Greater Community Church where I am able to feel his greatest presence and be reminded to stay ever so faithful.
Today I am hopeful, and as long as I do not have a cure, I will work tirelessly to fight for one.
Zayna Achmar is a United Mitochondrial Disease ambassador (http://www.umdf.org) and third year PsyD student in the Clinical Psychology Program of the Illinois School of Professional Psychology at Argosy University Chicago.