There is something I have never been able to admit. I wear a mask. I do my best to keep everyone at arm’s length, if not two arms, in order to hide the truth about my body. Now, in my time of need, I have to undo more than twenty years of walls that I’ve built around myself, because I need help. I have to tell the truth and I am afraid. I’m afraid of what people will think of me, I’m afraid that people won’t believe me, and most of all I am afraid that I won’t ever be free of my disease and I won’t be able to get the treatment I need because all I have done is hide. But… I am not hiding anymore. This is my story, at least what I can remember.
When we were kids, my brother, sister, and I were raised to not show weakness. As a baby, I actually proved to be the healthiest of my siblings, and I was wild, I was independent. I wish I could remember those days. The earliest memory I have of being sick was one day at my grandmother’s house in Florida. We were all outside playing in the sprinklers, care-free, and wet. I came inside and it hit me. A headache that I couldn’t even begin to explain, it was a pain I didn’t even know could exist at my young age, and my family thought I had probably just over extended myself outside. So I went to sleep, and slept for almost 24 hours without being able to wake up. After that headaches became a normal occurrence in my childhood. I was told that they were a cry for attention, I was told it was all in my head, and I was told I was a completely healthy child. So as a defense mechanism, I hid. Not physically, but emotionally, and mentally. The care-free independent child that I was turned into a smile and a phrase: “I’m fine”.
We began going to doctors and medical facilities frequently. No doctor could find anything wrong, and I soon believed that I was just broken. When I was 11 years old, I got my first ray of hope, I got my Dream. If it wasn’t for this silly, possessive Arabian, I don’t think I would be here today. It became routine. I woke up, and went to school, struggling to make it through the day, because I knew after school, I would get to see Dream. He was my motivation to get out of bed in the morning, and he saved me. Rather than focusing on being sick and broken, my focus was to take care of my horse. During high school, I worked every day after school and on the weekends, at a local boarding/training facility in order to pay off Dream’s board. And this became my life, outside of school. Every day was hard, and I didn’t know whether or not I was going to be ok, but Dream needed me, and I needed him.
My sickness quickly progressed. Soon the headaches turned into an array of symptoms ranging from chest pain to chronic fatigue, and everything in between. I continued to hide, and I began to hate myself. If this was all in my head, why did it hurt so much? I tried to make not only everyone else, but even myself believe that I was normal. I joined clubs, was in band, became drum major, and hung out with friends whenever I could. Everyone else saw a lively girl, because I tried not to let people see the truth. What they didn’t know was that I couldn’t see my music, because my eyes hurt in the light, and my vision was failing. They didn’t know that during drum major camp, I collapsed and my whole body went numb, and the medic team couldn’t find my pulse… twice. That during each football game, my mom would be close behind the bus, with a bag of medications in tow, praying her heart out that I was okay. Walking to class, and up the stairs killed me, but I was too embarrassed to ask to use the elevator. I would study my butt off every night, just to go the next day and be a blank slate, and not able to concentrate on my papers or my tests due to an intense mental fog. And, just to make sure not to be overshadowed, my migraines persevered. Every day, all day. Pain became the only thing that I knew.
So, what did the doctors have to say? I had a pediatrician tell me that my chest pain was a pulled muscle, and an endocrinologist told me that being sick after every meal was due to lactose intolerance, then fructose intolerance, then he just gave me a clipboard and said, this is all you can eat – the cardboard. My neurologist doped me up on so many medicines that I can’t even begin to tell you what happened during my junior high years, so we moved on to a different neurologist who admitted me into the hospital for 2 weeks to detox my body, and lower my med count. He then spent the next several years treating my migraines, even though I complained of dizziness and a mental fog, and he attributed them to side effects of the meds. Nothing changed, and he gave up. I was passed along to a colleague of his who was a cardiologist. The chest pain was accompanied by heart palpitations, inconsistent heart rate, and low blood pressure resistant to meds to raise it… oh and blue fingers. This cardiologist was working on a study that linked migraines with holes in the heart. For the first time, we thought maybe we found the cause of all my problems. They brought me in for a tilt test, in which they tilted my body back while I was strapped to a table, and they monitored my vitals. I was supposed to remain in this position for up to an hour. They had to take me off after 7 minutes, so that I wouldn’t have a heart attack. My blood pressure dropped extremely low, my body turned white, and I couldn’t breathe. So we moved forward. The next step was ASD closure. To cover the holes in my heart, if they were there. So before the surgery, they did a bubble test, in which they sent bubbles through my vessels to see if any showed up on my brain scan. He told us, that if he saw 2 or 3 bubbles, they would go ahead with the surgery. I had hundreds. They covered the holes, or so they thought, and after two surgeries we thought I would be ok. But the migraines, vision loss, chest pain, palpitations, memory loss, mental fog, chronic fatigue, muscle cramps, bruises, and dizziness continued.
I tried to be a normal girl. But along the way, I’ve lost friends and boyfriends who just didn’t understand why I couldn’t go out with them all the time. I watched my family on vacations having fun while I laid in the hotel room wishing I was home. I went to horse shows or lessons then came home and slept for the rest of the day barely able to move. There’s been days I couldn’t pretend, I couldn’t smile, so I just stayed home. Away from everyone. I went to college, on and off, until it got to the point that I could only take online classes because the drive and sitting during an entire lecture proved impossible. I cancelled plans and would leave movies early, because I couldn’t handle the noise. I sometimes hoped for the rain, so I have an excuse to stay in bed. This was me.
After my second heart surgery, with no improvement, my immune system came into question. The treatment they tried was steroid pills, and for once, I felt alive. The fog was lifted, I could concentrate. I have been diagnosed with dysautonomia; in short, my body is attacking itself. And this is the first time I believe my diagnosis. While I am on the steroids, I feel better. Not perfect, the symptoms are still there, but they aren’t intense 100% of the time. When I am not on the steroids, I go back to what I was. And it affects my academic life, my social life, my professional life, and my family life. They have developed a treatment involving my own stem cells that can help heal and rebuild my body. I have hope, and I believe in myself. This treatment is not easy to get, and it is not cheap. I have never asked for help, for fear of being judged or thought less of, but I have a chance to live, and I am going to take it. Already so many people are stepping up to help me, so I believed that they deserved to know the truth, as well as anyone else who hears my story. No one deserves to feel like they are crazy, or that what they feel isn’t true. What I have written here barely scratches the surface of what I have had to deal with my entire life. So whether or not, you are donating, or just reading my story, I hope that I can inspire you. I have never stopped fighting to live, and I am not stopping now. Thank you all so much.
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- Mary Wesolick
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