Hi, I am Haley Byrd, and for the first time I am publicly sharing my story. I want to start off by saying I have lived a very privileged life. My family has always bent over backwards to provide me with the very best of everything and I will forever be thankful for that. Everything was fine… until the tremors started.
In 2002, when I six years old, my parents got divorced. Jumping a few years later, I met my stepmom and stepsister, who I now cannot imagine my life without. My stepmom was the first person to notice the very thing that would lead to an emotionally, mentally, and physically draining journey. She noticed a slight tremor in my hands, but it was not anything out of control at the time. The first time the tremors really affected me I was in eighth grade taking an essay test. Suddenly, I had no control over my hands. I dropped my pencil, laid my hands in my lap, took a big breath, and exhaled. That was it. I went home, told my parents what happened, and that was the beginning of it all. We went to a few doctors around my small hometown and none of them could pinpoint a diagnosis, or even tell me what the cause of the tremors could be. I dealt with it all through high school since it was manageable at the time… until my senior year. There were days where I would forget the tremors even existed, but there were days where it was all I thought about.
My Trip to NYC
I managed to make it through my senior year just in time for my senior trip to New York City (my favorite place in the world)! What was supposed to be the best trip of my life turned into a trip full of tears, fear, and constant anxiety. We had planned on taking the subway to places that were too far to walk but I couldn’t even make it down the first couple of steps without my legs shaking, causing me to feel like I was about to fall. We ended up having to take a taxi everywhere which was SO expensive! When I got back home is when we really started cracking down on getting medical help. At the same time, I was starting my first year of college, starting a new job as a nanny (where you really have to be ready for everything), and joining a sorority. Life felt CUH-RAZY!
By the end of my first year of college, the tremors had gotten ridiculously out of control. When the spring semester ended, my dad, stepmom, and I moved two hours away to Houston, Texas. So now, not only were my medical issues getting worse, I was starting school at a new college, and starting a new job in a town where the only people I knew were my parents. Of course, with my love for children, I became a nanny for the most wonderful family with two little girls. I struggled a lot during my two years caring for the children and attending college. The tremors had spread from my hands, to my legs, and then to my jaw. If I had my hand at certain and various angles; I had difficulty picking up and setting things down. My legs were shaky; if I tried to walk on ground with different elevation or even climb up and down stairs. I developed a stutter that made it hard to talk. I always knew what I wanted to say but the muscles in my mouth and jaw couldn’t form them. In the spring of 2017, shortly after my 21st birthday, I woke up one morning to attend my student teaching classes, but I couldn’t walk, talk, and had very little use of my hands. My dad called the school I was observing to let them know I was “sick.” He emailed my professors, told them a summary of my health, and I finished the semester from home.
Time for Change
That is when my family and I decided it was best to take a break from school and work to sort all this out. Since I had so much free time, I re-watched (yes, re-watched) Grey’s Anatomy. They kept mentioning how great of a neurology program the MayoClinic in Minnesota has. One day, out of curiosity, I took it upon myself to call the clinic to see when is the earliest they could fit me in. After making an appointment and discussing it with my parents, in October of 2017, we flew to Minnesota for a very cold week! We went back again in December and in February. They ran multiple tests consisting of blood work, EEG, EKG, CT scan, MRI, over and over again, each and every trip. I went through serious withdraws after all the medication I was prescribed. For three months, I relied on my parents for every single thing. From severe headaches to body aches and the tremors returning worse than ever; I couldn’t walk, couldn’t feed myself, or even shower without assistance. It was a long journey to recover from the withdrawals. It has been a whole year and I am still not 100% back to my normal self.
My Life Now
When I was starting my senior year of high school and planning for the future, I never imagined that I would be 22 years old without a job, on disability, taking time off from college, and missing all my best friends getting married and having children. As of right now, September 2018, I have seen multiple doctors ranging from pediatrician neurologist, adult neurologists, movement disorder specialists, psychiatrists, counseling therapists. I have tried physical therapy, occupational therapy, and speech therapy. I’ve even made some major life changes by eating healthier, being more active, cutting out caffeine, and getting 7-8 hours of sleep each night. I would be lying if there were not days where I just wanted to quit; quit with the doctors, the therapy and missing out on life. Through all of this, I have learned that life will hit you with some major curve balls. I have experienced some of the highest of highs and lowest of lows. I still do not have a diagnosis. But I want to leave off with a message to anyone who is struggling or battling anything in life; do not give up. My promise to you is that it does get better. My journey may not be over, but I am slowly accepting what my life is now.