Liz’s Full Story
Updated: 12 hours ago
I battled an unusual amount of sickness as a young child. I guess, I was what you would call the “sick kid” of the family. My first childhood memory is me throwing up all night and my second is being rushed to the hospital for breathing treatments. The bathroom was often a steam room for me sleep in. There was always something going on with me, but I was determined to not let it slow me down. I was always on the honor roll and in the accelerated programs at school. I was constantly looking for the next challenge and thriving on adventure, climbing on and jumping off of just about everything. After seeing how I taught myself to do a back flip, and coming home to me “vaulting” over the living room couch, my mom quickly enrolled me into gymnastics classes. I had found my first love, and the gym quickly became my second home. I started competitive training right away and won my first state championship within a year.
There were many neurological symptoms and cognitive issues during my childhood that I go into more in the unabridged version of my story. They seemed to progress as I got older and went into junior high and high school. I didn’t think they went well with my “tough girl” athletic persona, so I kept most of them to myself and would just push through them the best I could. It was hard because at a young age I could tell that something was different about me and for some reason, I physically could not handle the level of training that my talent had brought me to. I tried to “will through it” the best I could but by my sophomore year in high school, we decided for me to stop training at the intense club level and instead join the varsity team at school, which was more laid back and proved to be less stressful on my body. This also opened up the opportunity for me to join the track team where my pole vaulting days began. My coach asked if I wanted to give it a try at a pre-season meet. He just told me to go for it, and I ended up breaking the school record. It takes someone a little crazy to slingshot themselves into the air with a fiberglass pole, and I just happened to be that person. It was exactly the adrenaline rush I was looking for, and I was totally hooked.
Neurological and digestive symptoms grew worse in highschool and really started to affect every area of my life by the time senior year was over. I would randomly throw up in the middle of the night. My arms and legs would go numb during practice, and I would stop in the middle of my routines as if I forgot how to do them. I would suddenly lose my depth perception and awareness in space and I started seeing stars at least once every gymnastics practice. These are just weird things to a teenage athlete, so I had no idea what to do except for push through them like I had always done. Due to reading and attention difficulties, I stopped taking all the higher honors classes and started to take the ones that offered an easy “A.” Rather than tell anyone that something was wrong, I just made it seem like I was bored and wanted to focus more on athletics. I often just didn’t feel right, but could not put a finger on it. It just seemed like I pushed myself too hard, and my body refused to keep up with me anymore. Everyone expected me to compete at the collegiate level, but I knew I wouldn’t be able to physically handle the training or the classes at a University, and I made the tough (and expensive) decision to give up athletic scholarships to go to a private school for fashion design. I had been sewing since the age of 5 and whenever I wasn’t in the gym, I was usually designing my own clothes. So I guess you could say I gave up one passion for another.
I thought this would alleviate my health issues, but instead, it just seemed to change them. Along came depression and all sorts of emotional dysregulation. I had always been challenged with physical illness and had bouts of anxiety as a young child but depression was a new animal. I would have never admitted to it at the time though because I was “too tough” to be depressed. I thought I was just going through a personality change because I was away from home for the first time. I avoided the pain by losing myself in work, school, and partying. I was doing anything just to try to “feel good” again. At one point I was working 3 jobs while taking 16 credit hours and still finding time to go out with friends. I was in constant overdrive and felt like super woman for a couple years until all the sudden my health plummeted. Vomiting, chronic pain, sleep disorder, hormonal imbalance, headaches. It felt like my brain and body had a mind of their own and were self destructing with no rhyme or reason. I finally saught out medical help. Doctors ran tests and put me on a lot of different meds, but they seemed to just complicate my symptoms instead of make anything better. When no answers were found they blamed it on anxiety and stress.
I did have some recovery after college was over. Symptoms were more manageable and I was able to start competing recreationally in the sports I had loved so much while working in my new career as a fashion designer. My husband and I were newly married, just bought a house, and started a marketing business together on the side of our budding careers. Things were looking really good for the future. But in 2010, I started to grow very sick again. I began to question if it was stress related and maybe I was just doing too much.
I turned into a complete health nut, I de-stressed my life, researched every healthy living book I could get my hands on, and radically changed my diet and lifestyle. But no matter what I did, I just got worse. It felt like my brain and body were completely shutting down on me. Just trying to live a normal life became a huge struggle. I was diagnosed with more disorders and syndromes than I can even name, but no one could pinpoint where they were coming from. Some doctors thought it was an autoimmune disorder, some thought it was an infection deep in my tissues, and some mentioned fibromyalgia and epstein-barr. I went through testing for things like chronic lymes disease, celiac, and leaky gut, but most testing would come back negative or unclear and I knew I never fit the perfect description for any specific diagnosis. Instead, it was like I had a little bit of everything. I was told to just accept that I had a degenerative disease that was incurable, and all I could do was just take medication to cope with the symptoms. I ran into some great doctors who really wanted to help but felt it was out of their specialty, but many others were just quick to write me a prescription or hand me drug samples and move on to the next patient.
But I didn’t want more drugs. I wanted answers. I wanted to know why my body wasn’t working anymore so I could find out how to fix it.
By this time, I couldn’t even get out of bed on my own strength to go to work. My husband would come home on his lunch break to pick me up out of bed and massage my arms and legs until I could move and walk around. I’d walk in 3 hours late to work like everything was fine and never told anyone what was going on. I’d only have about 2 hours a day that I could function somewhat normally so eventually, we made the decision for me to come home and try to just work in our home based business on my own schedule. I still had a passionate and driven spirit and would fight so hard to push through and do everything I could in our business, but my body fought back even harder. I was collapsing multiple times per day for 15-45 minutes at a time. It was like someone just pulled the power plug on my entire body, and I went into a “spell” where I couldn’t move or talk. I would fall asleep doing daily tasks and was diagnosed with narcolepsy after some testing. I could only drive for short familiar trips, and even then I needed a gps to remind me where to go.
It’s impossible to name every symptom. I go into them more in “My Story Unabridged.”There were digestive problems, sleep disorder, dizziness, loss of balance, auditory and visual processing difficulties, attention and memory problems, stabbing pains in my head, partial seizures, arthritic pain, and the list goes on. The fatigue was unbearable, and every day was like waking up with a combination of a hangover and the flu. Any kind of activity made me feel like I was drunk or in a dream, and the more I pushed myself the worse it got. I would try to work from home in our business or do chores around the house, but I’d end up just getting lost walking around my house aimlessly. By the time I remembered where I was or what task I was trying to do, I would run out of breath and have to sit and take a break.
Doctors would sometimes bring up depression or anxiety, because I had all the physical aspects, like fatigue, sleep issues, heart palpitations, difficulty breathing, etc, but I didn’t recognize it as such because unlike in the past, I didn’t particularly feel sad or fearful. In fact, I realized one day that I didn’t feel much of any specific emotions anymore. I remembered how things used to make me feel happy, sad, scared, or angry, but now, I felt more like a robot than a human being. It’s almost as if my body no longer had the energy to even produce emotions. Sometimes after a collapsing spell, I would have a rush of emotion and cry, but it was more of just a random physical feeling that happened as my body was coming back to life. Often a physical sensation of hopelessness or a complete lack of peace flooded me. It was like wave that came over me for few seconds up to a few hours and was triggered by things like trying to walk in a busy grocery store, or physical pain such as a stomach ache. I knew that it was just another dysregulation in my body and just to hold on because it would pass eventually.
Everything my body was supposed to naturally regulate like heart rate, breathing, digestion, body temperature, etc. was all over the place. There was no normal. One minute I was in a frantic fight or flight mode bouncing around everywhere, and the next minute, I didn’t even have the strength to sit up. I started to live what felt like a double life. I rarely left my house but a few times a week for church, medical appts and our weekly business meeting. I would appear healthy and high energy for the most part while my body was in fight or flight mode, but a couple hours in public would take days to recover from. I would try so hard to act “normal” when I was with other people and I made sure to post a fun picture on facebook whenever I could so my friends and family wouldn’t worry about me. These days you can just post a few pictures on social media that look like you are having fun and everyone thinks that is what your life looks like all the time. Those closest to me knew that something was going on. It was impossible to hide everything, but only my husband saw what I was facing on a daily basis, and I worked hard to keep it that way.
These two pictures were taken in the same afternoon within hours of each other.
It’s amazing what hair makeup and a smile can do.
When you live the life of prolonged chronic illness you can become a master at looking “not sick” meanwhile the constant pain and suffering inside is almost to much to bare.
“Sometimes it’s just easier to act like everything is fine than to try to explain to someone why it’s not.”
Pride had a lot to do with it. I never wanted anyone to think I was weak or feel sorry for me. I also believe in the power of words and the last thing I wanted was to speak negative things over myself or have others speak negatively about my situation. I also didn’t want people to think I was trying to exaggerate my problems to get attention. I believe anyone fighting through chronic illness can relate to the fact that sometimes it’s just easier to act like everything is fine than try to explain to someone why it’s not. Besides, it was nice to be able to be who I wanted to be and live the life I wanted if even just for a short moment. Sometimes on a really good day, with enough distractions, I could almost forget that I was sick for a short time.
Through it all, I oddly still had a great sense of humor whenever I had the energy for it, and my husband and I went out of our way to laugh as much as we could. It was the best way we knew how to soften the blows of the realities we were facing, and he said it was the only time he could see a “real” smile on my face. It’s not that I never smiled, in fact, I had my “game face” perfected to the point that most people around me never knew that something was going on, but he could tell the difference between the smile that I wore through my pain to be courteous and the effortless one he could draw out of me with his silly jokes.
All my life I was known as a high achiever and a hard worker, always thriving on overcoming challenges and solving problems. I had started out so full of faith that I would be healed and that God would use my story to help others. But as the years passed by, and I grew worse instead of better, I began to raise a white flag. I did everything I knew to do, but for some reason it wasn’t enough. I reached a point in my journey where I didn’t necessarily want to die but I didn’t feel like I had the strength to keep living. I could no longer contribute to our income and my medical bills were multiplying. I felt like a helpless burden and I was sorry for my husband that he ever married me. Though he went out of his way to make sure I never felt guilty it was still a battle to not think about all the things he could have if I were gone.
It seemed that everything I had ever been good at or proud of was taken from me. Everything I once used to define who I was as a person dissolved until I had nothing left. Sometimes it takes losing everything for us to finally surrender the ashes we have left to God so that He can finally do what He wanted to all along.
“She rises while it is yet night”
One day day at church, we had a guest speaker and she referenced Proverbs 31:15. “She rises while it is yet night.”
I knew this was an encouragement to me to reignite the pilot light of hope and start walking in faith again, and that even if I was walking in the dark, God would lead me, and He did. I was soon lead to the right testing and the right doctors in the most amazing way, that I couldn’t have orchestrated on my own.
I had some doctors along the way that I could tell, thought my illness was in my head, but this new doctor I was referred to, said it was in my brain. I wasn’t sure what to make of it, but he told me that based on my symptoms and test results, I was the poster child for traumatic brain injury and post concussion syndrome. But I never had a brain injury that I knew of. I mean I had a lot of crazy things happen in my life, but I could always walk and talk after them, so I didn’t think of them as a brain injuries. It wasn’t until I researched my medical records, and did a timeline of the incidents in my life that I realized that he was right.
When I was 16 months old I slipped through the railing at the top of a staircase and fell straight down nearly a full story. No one saw exactly how I landed but a huge black eye revealed an impact to my head.
I was in multiple vehicle accidents as a child. The one that I believe was most significant, was on my tenth birthday when a car ran a red light and hit us. My mom was driving and my sister and I were in the back seat. This was directly followed by a fall to my head in gymnastics when I was first learning a back tuck. This didn’t seem to out of the ordinary at the time. In fact, I had fallen on or hit my head numerous times whether in sports or just being my adventurous self. I ended up in the ER a few times but mostly just when we thought I needed stitches, I remember blacking out and getting my bell rung a quite a bit, especially in athletics, but there wasn’t a large awareness of concussions back then so no one thought much of them. We sure didn’t think that they would be causing my symptoms. It was only after looking closely at the timing of some of the major incidents and the changes that happened in my health and school work that we realized the effects they had on me.
I almost choked to death in 7th grade. I fell unconscious from the lack of oxygen and someone dragged me out of the bathroom where I fell and resuscitated me. I didn’t know that hypoxia could cause what is called an aquired brain injury due to lack of oxygen to the brain. So when more neurological changes happened, we didn’t think of it as being a possible cause.
In college, I was hit by a car when I was walking. I was tossed in the air and my head and shoulder smashed through the windshield. Then when the driver stopped I toppled back onto the street. Everyone said I was lucky to be alive. After being released from the hospital and taken off the drugs, I figured if I could still walk and talk I must be fine. But I wasn’t, things got worse that year and I didn’t know it was from the accident.
2 years later I was in another high speed accident. This one was my fault and I believe the result of my illness I was already dealing with. I don’t remember much except for hitting the sidewall of the highway multiple times at about 65mph and totaling my car. Of course I was shook up, but I was high on adrenaline. I even went to work that night so I thought I was okay. But in the months following I grew even more sick than I already was and had no idea it was related.
A few years later when I had started to feel better. I was pole vaulting in a collegiate track meet and my pole broke sending me headfirst into the box area in between the mats, where you plant the pole. I was in pain and a bit shook up but I just got up grabbed another pole and took another attempt…
A year after that, I was hit by a drunk driver that ran a redlight going about 60 mph. The same year my illness took a turn for the worst.
August 2014 was when I finally received the correct diagnosis. I can’t say of all things, I expected to be told I had brain damage, and I can’t say that I wanted to accept it at first, but it was such a blessing that I was diagnosed by a doctor who was well educated on neuroplasticity and the brain’s way of healing. He didn’t give me a doom and gloom diagnosis like I was used to. Instead, he was quick to show me some new cutting edge treatments that are available to help.
A few months later, I traveled to a brain center in North Carolina for a 2 week brain injury rehabilitation program. It turns out all those weird symptoms that made my former doctors look at me funny were actually common post brain injury concerns. These doctors already knew them by name, and had extensive testing for them. Many times they could even tell me what was happening inside my brain to cause the symptoms and how we can create new neural pathways by retraining my brain to work properly again.
I can’t even describe the way it felt to finally know what I was fighting and have a plan to overcome it. It felt like I started a whole new life, but after coming back home from the brain center, I knew it was going to be just the
beginning of long road of recovery. The healing process has been quite a journey so far. There is no magic pill or surgery. There is no expected timelines or sure outcomes. It takes a lot of hard work, time, patience and a ton of financial sacrifice. So far, I’ve experienced really exciting breakthroughs and extremely tough challenges. But I know every penny and every single bit of blood sweat and tears is going to be worth it if I can help just one person have hope for a better tomorrow.