Liz’s Full Story (Unabridged)
Turns out I was always looking for adventure as a child, and as a tiny 16 month old, I slipped through the railing at the top of a staircase and fell straight down nearly a story. No one saw exactly how I landed but a huge black eye showed that I hit my head.
I was quite sick throughout my childhood. In fact, my first memory is throwing up all night and my second one is being rushed to the hospital in the middle of the night for breathing treatments. Our bathroom was commonly my second bedroom, because we could fill it up with steam for me to sleep in and keep me close to the toilet. I asked my mom what age most of my illness started and she estimated at about 2 years old. She still talks of how even when I was incredibly sick, I rarely complained or lost my composure. Some of that had to be by nature. Even at a young age, I didn’t want to show weakness. I also think I learned early in life that if grown-ups found out you were sick, you had to sit out and miss all the cool things in life. Since sitting out of any adventure sounded like torture to me, I taught myself how to keep my complaints to a minimum and act “fine” even when I clearly wasn’t. I was the only kid I knew that faked well so I didn’t have to miss school. I loved it, school came very easily for me. I was in advanced placement for everything and scored well above my grade level on all the standardized tests.
I was always looking for the next challenge, and between climbing trees, jumping bikes and roughhousing with my older brother, I’ve ended up in the ER more than once. Gymnastics also became a large part of my life after my mom saw that I taught myself how to do a back handspring. I started late at age 10, but started competitive training very quickly and won my first state championship within a year. Falling is a normal part of a gymnastics. Things might be different now with a higher awareness of concussions, but back then, if we could get back up off the mat, we thought we were okay. I’ve definitely had my share of serious falls and had my “bell rung” or blacked out a few times, but I’m not sure how many of these would be considered concussions or what they are now calling non-concussive hits. It only takes a few minutes of watching a high level gymnast learn a new skill to see that falling repeatedly is just part of the sport. I think I can relate to all young high level athletes when I say that dizziness and headaches were just expected after a large fall and we try to cover it up the best we can, either out of determination to win or just sheer embarrassment. Even people that were never in athletics, but were in an accident of some sort can understand that many times due to adrenaline and endorphins, you don’t even “feel” it until the next day. Maybe it was just my own lack of awareness, but I never thought about the possibility of my brain sloshing back and forth in my skull.
I was also in a few motor vehicle accidents growing up. One in particular, was on my 10th birthday when my mom, sister and I were hit by someone that ran a red light. By 5th grade, which was shortly after this vehicle accident followed by a fall to my head learning a back tuck in gymnastics, I can remember having what I now know are common post concussion symptoms like fatigue, anxiety attacks, emotional dysregulation, insomnia, headaches, and neuromuscular pain in my legs. I became extremely hot tempered and my parents thought it was hormonal. I remember throwing a huge tantrum one night that involved climbing out on the roof, because my parents wouldn’t let me watch a movie. I later told them that I thought about jumping off. They knew that I knew better, and I did, but I think it was just my way of telling them something wasn’t right. I started to suffer from intrusive thoughts and anxiety attacks. Many times I found myself crying hysterically on the floor, because I thought someone in my family was going to die in a car accident or be murdered. It was confusing for us all, because it was completely out of character for me. Other than the moments of terror and fits of rage at home, I was a well behaved honor roll student, very social and active in my church and community. Embarrassed, I tried to keep my struggles to myself, so no one would think less of me. The attacks eventually became less frequent and were soon forgotten.
My handwriting changed drastically in my school papers that were saved from middle school. I started skipping letters and writing the wrong words multiple times per page. I would always fix it as I went, so it just looked like my writing became very sloppy. I guess it didn’t bother me much, because I didn’t realize how bad it was until I was an adult and couldn’t even write on a greeting card without messing it up. I also started to have a hard time with reading comprehension and paying attention in class, but because it was mild and I was resourceful, I could find ways to figure stuff out and still get good grades. I did what I find very common in kids who have been affected by concussions. I acted like everything was fine, or “no big deal,” even if I was struggling. I was a high achiever and I wanted everyone to be proud of me and impressed by my abilities, I couldn’t stand the thought of someone thinking I had anything wrong with me or that I wasn’t smart.
Brain injuries are not limited to just hits to the head, and can also be caused by hypoxia or lack of oxygen to the brain, so I feel I should include an incident when I was 12. I was at a friends house and we were being silly playing board games. The juice I was drinking “went down the wrong pipe” which happened to me frequently, but this time was different. In a panic, I ran into the bathroom where I fell unconscious, also hitting my head on the way down. I am not sure how long I was out for, but it was long enough for my friend’s sister to drag me out into the hallway and resuscitate me. This was going into my 8th grade year, where I once again battled cognitive changes, insomnia, fatigue, and anxiety. I suddenly developed an extreme fear of going backwards which greatly affected my performance in gymnastics. We had to replace many of the backward tumbling in my routines to forward ones, because my body simply would not let me go backwards anymore. I have since learned that this affects about 10% of gymnasts to some extent, and I wonder if concussions might be a cause.
Between the anxiety, fatigue, back problems, and neurological symptoms we chose for me to stop training at a club level in gymnastics and I switched to high school varsity gymnastics my sophomore year which we knew would be less stress on my mind and body. I also started pole vaulting on the track team. I loved pole vaulting, which is a lot like gymnastics except you fly much higher and fall a lot further. There was a danger and a toughness to it that I loved. They made us wear helmets because there were a couple students that had recently died from head injuries. I hated that rule back then because it seemed “wimpy”, but in hindsight, I am thankful for it.
High school classes were a game of teaching myself outside of class, copying a friend last minute, getting cliff notes, and finding out exactly what would be on a test to memorize it. I never read any of the required material, but still managed to get high marks. I figured out that a GPA was a GPA no matter if you took Pre-calculus or Graphic Arts, so I dropped out of the advanced programs and started taking what we called “blow off” classes for an easy “A”. I masked my frustration with boredom to play it cool, but I struggled inside and wondered why things were so much harder for me.
More severe neurological symptoms started to develop. My arms and legs would suddenly go weak in the middle of my routines and, I saw stars at least once every gymnastics practice. We thought maybe it was from my back problems. I had been diagnosed with many spinal problems including a bulging disc that we thought might be pressing on my nerves. When a chiropractor or orthopedic surgeon looked at my x-rays, their first question was usually, “How many times have you fallen on your head?” My neurologist told me my symptoms were not caused by my bulging disc, but didn’t tell me what could be causing them. Weird things started to happen like I would just stop in the middle of my gymnastics routines and not remember where I was or how to perform a skill. I started to become disoriented when I tumbled the same passes I had done for years. I would frequently run down the runway, and by the time I was about to vault, I forgot what I was doing and baulked. I’ll never forget the last routines I ever performed my senior year, I was ranked number 1 in the state on bars, and at the sectional meet I just stopped in the middle of my routine. I didn’t fall or lose control but just stopped mid-swing. I forgot I was competing! Needless to say, I didn’t even qualify for state on bars, but I did manage to on vault and floor and I traveled all the way to the state meet to do the same thing. I got so disoriented that I just stopped in my last tumbling pass. Not exactly the way I imagined going out.
It was normal for me to not feel well so when I would randomly wake up vomiting in the middle of the night, I would just blame it on my sensitive stomach or bad food. My mom also had a lot of health challenges, so I thought maybe it was hereditary and I needed to just be strong and not let it stop me. I got pretty good at toughing things out, so much that I talked my parents and coach into letting me pole vault in a track meet, despite having pneumonia, because I refused to let it stop me from competing.
I graduated high school with athletic scholarship opportunities, and everyone expected me to go to a university. However, I knew that my body would not be able to handle the demand of collegiate sports, nor did think I could cognitively handle regular university courses. I moved to Chicago to go to school for fashion design which had always been a passion of mine. I had designed and sewn my own clothes since I was a little girl, and though many things became harder for me over the years, engineering patterns and constructing garments was still a strength of mine.
One day, I was on a routine jog downtown with my roommate. We were in the crosswalk of a large intersection and after waiting for a truck to make a left hand turn, we didn’t quite make it the rest of the way across before I was struck by a car. We still don’t know if she ran a red light or if the light turned green before I could get across, but the sun was in the driver’s eyes, and she hit me going about 35 miles an hour. According to my roommate, I flew straight up in the air and then my head and shoulder smashed through the windshield. When the car stopped, I was thrown back onto the pavement. I was conscious after the accident although apparently not in my right mind. I’m glad I wrote about the accident in a journal soon afterward, because I currently don’t remember much at all. Apparently, I got up off the pavement and tried to put my ponytail back in, but instead ended up with a handful of glass, blood, and hair. Someone shouted that they were getting a towel from their trunk to help soak up the blood. I told everyone I was just going to walk to my apartment and clean up, but they made me get into an ambulance, which seemed to show up immediately. I wrote that the paramedic told me I was in shock and would feel the pain soon. I do vaguely remember trying to pick shards of glass out of my shoulder while they were putting me on the stretcher.
I remember looking up at all the ER nurses as they were cutting my clothes off, and the sting of novacane shots as they stitched me up. I wrote down that they did things like X-rays, and checked for internal bleeding. I don’t think anyone mentioned anything to me about a possible concussion even though it was apparent that my head had busted through a windshield and then likely hit the pavement when I tumbled back onto the street. I remember in a follow up visit a nurse pulled my dad aside and asked if I was his daughter. She said she was working the ER the day of the accident and she had never seen someone brought in with the level of severity I was and remain as calm as I was. At first I was proud to hear that comment, but something tells me I just really had no concept of what had happened, and that should have been a red flag to those working in the ER. That accident took quite a bit of recovery. I took some time off from school and stayed with my parents in Wisconsin. I remember the pain of waking up every night stuck to my bed sheets because my lacerations leaked through the gauze dressings. I had headaches, nausea, and uncontrollable emotions in the weeks that followed, but I was on high doses of pain medication, so we thought those symptoms were side effects. I still remember my mom looking at me during a crying spell and saying, “Elizabeth, we need to get you off those medicines. This is not good.” I didn’t know the symptoms of a brain injury at the time, and I was not in a place mentally to figure out what was going on.
The next couple years were tough. I don’t know how to describe it other than I felt like a completely different person. I didn’t know what was wrong with me, but something wasn’t right. I gained 35 pounds almost immediately, and had uncontrollable cravings for sugar. I struggled hard with depression and felt like I lost who I was. I did things completely out of character to try to “feel good” again. I thought I was just adjusting to my independence or being a rebellious college kid, but now, I realize that I was self medicating to try to get back feelings that my brain no longer produced on it’s own.
I lived a crazy busy college life. The worse I felt the more I tried to accomplish. I was overly passionate with an extremely hot temper, and obsessed with work. I didn’t realize it at the time but my brain was in overdrive. I couldn’t sleep at night so caffeine and ephedrine pills would get me through work and school. My record was 3 days in a row without sleep. One morning, I was driving to work going about 65 on the highway and the next thing I know, I was crashing into the side wall of the highway. I remember feeling multiple impacts and I can vividly still see in my mind the moment that I “came to” and realized I had just been in an accident. I still don’t know what happened or how it happened and I didn’t know there was another car involved until afterwards. I’m sure I was in shock and pain, but I wasn’t bleeding this time, so I probably told people I was fine to avoid another hospital visit. I even still managed to make it to my second job bartending at a restaurant that evening, probably still running on adrenaline from the accident. I never liked missing work for anything, and by now it seemed like totalling my car was just another day in my crazy life.
In the months after that accident my existing sleep and neurological symptoms grew worse. I also started having digestive problems, headaches, chest pain, hair loss and other hormonal issues. I rapidly lost all the weight I had gained after the last accident. At work, I started to struggle remembering what people needed or who I was waiting on. I also couldn’t stand for long periods of time or get through my shifts without high amounts of caffeine or ephedrine. I was coaching gymnastics at the time and found myself not able to pay attention to a 1 minute routine and forgetting to pull the springboard when my girls started their routines. My co-workers thought I came to work hung over because I was always so exhausted and had to take vomiting breaks. I didn’t know to relate any of these things to the recent accident. I didn’t even realize these symptoms happened directly in the months after the crash until I looked back at my medical records years later when I was creating a timeline. Based on my symptoms, doctors tested me for things like mono, crohn’s, fibromyalgia, and ulcers, but never found any real answers. After an endoscopy procedure, they found that there was food still in my stomach from the day before, which is a sign of autonomic nervous system dysfunction, but my doctors didn’t put those clues together at the time. I couldn’t be in daylight without having a headache, but I was already on a medicine for my skin that said it could cause light sensitivity and depression. Doctors put me on many different medications, and I tried them all because I was so desperate. When nothing was working, they just blamed it on anxiety and I felt that they were just calling me weak or making me sound like a “head case”. At this point, I couldn’t tell what was still my symptoms or just side effects from the medicines. It was a nightmare and I felt like I was being treated more like a lab rat than a patient. Finally, I gave up and weaned myself off all medications and stopped going to doctors altogether. Unfortunately, I never realized why I was sick, but like the many times I had been on this rollercoaster before, I slowly started to get better over the next year or two and things became more manageable.
When I graduated college in 2007. I was ready for a fresh start. I moved to Virginia Beach to work as a fashion designer at a sportswear company. I was just starting my dream career and began dating the love of my life, Brendan. He and I were both working professionally as well as building a marketing business together on the side. He had also been a high level athlete all his life and we spent all of our free time enjoying an active lifestyle and competing in the sports we love. I was doing fairly well health wise and in the best physical shape of my life, competing in fitness shows and pole vaulting in the open division at college track meets. Of course, just like in highschool, I had a few pretty serious spills. I remember my boss questioning me one day about my bruises, and I had to explain to him they were from pole vaulting accidents and not my husband. During a meet in December 2008, my pole broke during my vault. I went head first into the box area between the mats where you plant the pole. At first it was just another fall to me and though I was a bit dizzy and shaken up, I got back up and took another attempt with a new pole. I’ve since learned that there is a fine line between tough and ridiculously foolish, but most athletes can relate. When you are in the moment with everyone watching and you want to win, your instinct is to do whatever it takes and worry about the pain later. After that fall I decided it might be best to take a break from vaulting. Looking at my health records I realize that I was very depressed for a short period directly after this fall, but I was also on a new contraceptive and blamed it on that. My health started to decline again with the return of sleep disorder, chronic pain, nausea, fatigue, trouble concentrating, and a whole host of mysterious neurological symptoms. This was about the time that my husband and I also found out that we had poisonous Chinese drywall in our new house and were forced to move out so they could rebuild the inside of our home. My husband thought this might be the cause of my symptoms, but I had a feeling that whatever it was that plagued me in college was slowly coming back.
Roughly a year later, (I wish I could tell you that I am making this up) on New Year’s Eve, I was hit by drunk driver that ran a red light going about 60mph.
At the age of 25, I had now been in 7 motor vehicle accidents, only 1 of which I was found at fault. No I don’t have a black cat, and yes, I was starting to get freaked out a little bit. I remembered being hurt and sore this last accident, but I don’t remember specifically hitting my head. I have now learned that you do not even need to hit your head to cause a brain injury. The word “concussion” means violent shaking and thats what your brain does when someone hits you at 60mph whether you hit your head directly on something or not. I have spoken with many people who have simply been rear ended at a low speed and have a significant brain injury from it because of how their brain rotated inside of their skull. I wonder how many people are living with a chronic illness that developed after an accident, and they don’t even know it was actually from the accident itself.
Things changed drastically in the months after that accident, I was fighting sleep disorder again and I found myself not being able to concentrate or stay awake at work. I was having all kinds of weird symptoms again like vertigo, brain fog, pressure headaches, ringing in my ears, dizzy spells, vision and hearing problems, partial seizures, stabbing pains in my head, metabolic syndrome, IGG food allergies, thyroid disorder, adrenal dysfunction, and autonomic nervous system disorder (irregularities in digestion, breathing, swallowing, etc.) My heart rate would fluctuate constantly mostly ranging from 90 to 140 but often dropping to 50 and spiking to 165. I thought my heart rate monitor was broken until I had my husband wear it for a day and saw that his was normal. For years, I had what felt like a constant bladder infection. I didn’t know why until I studied dysautonomia. My brain was telling my body to go to the bathroom when I didn’t need to, and when I did need to, I couldn’t. Weird things started happening, for instance, my throat would randomly swallow in the middle of a word when I was talking. Then when I tried to swallow something, I couldn’t, which caused me to choke on things all the time. Nothing was consistent, and the symptoms were always changing. I would go to the doctor and they would ask me why I was there, but all the sudden I didn’t know why or what any of my symptoms were. I learned to keep everything in a binder. All my medical records, a list of symptoms, and questions I had for my doctors. When I tried to explain all of my symptoms, most doctors just made me feel like I was nuts. Even I couldn’t understand why one day, I could bounce on a trampoline or hike up a mountain with friends and then for weeks, I could barely walk up a flight of stairs or stand up in the kitchen long enough to cook a simple meal. Eventually, I couldn’t even physically get myself out of bed each day. It was like I was paralyzed every morning and stuck in my dreams. My husband would come home on his lunch break, massage my arms and legs, pick me up out of bed, and hold me up until I could stand on my own, so I could go into work 3 hours late, only to sit at my desk and struggle to stay awake. Of course, little miss “I’m fine” would just walk into work 3 hours late everyday with a smile on her face like everything was great. I refused to tell anyone anything that was going on. I was just trying to tough it out because in the past my symptoms would eventually subside, but this time things got much worse in the years following instead of better. Little by little my body was starting to fail me.
I saw specialist after specialist, but everything I was diagnosed with was just a fancy name for my symptoms, and it wasn’t giving me any answers as to why it was all happening. I remember one day my neurologist took a look at my results from a daytime sleep latency test and shook his head saying “You have a big problem.” I thought “No kidding!” I was just glad to hear he might be able to pinpoint what the “problem” was. He said I had Narcolepsy, and I was born with it and it was just showing up now. He said it was degenerative and there is no cure, just medicine to help you manage symptoms. I thought it was weird that when I researched Narcolepsy only a small few of my symptoms fit into the description. In fact, I still have a list of symptoms that I wrote down to and told him about including: headaches, twitching and spasms in my limbs, ringing in my ears, crawling sensations on my hands and feet, heart palpitations, confusion, losing balance, vertigo, metallic taste in my mouth and all food tasting weird, shakiness, extremely cold hands and feet, etc but he completely disregarded them and only focused on my sleep, not even mentioning the other symptoms in his notes. This seemed to be a pattern with the conventional neurologists I had seen up to that point. I think anyone with post concussion syndrome can relate to this scenario. If only I knew then what I know now.
That diagnosis started a year of experimenting with tons of drugs and dosage amounts. I had reactions to all of them, but I still took them because it was the only way I could at least be productive for a couple of hours at work. The stimulants gave me the ability to be productive for a few hours followed by a huge painful crash. I didn’t know it at the time but I’m sure I was just setting myself further back in my healing the harder I medicated and pushed myself. One day after a severe reaction, I decided to stop all the medications. However, without them I could no longer work. It helped that we were making money on the side in a network marketing business to cushion the financial blow, and we decided for me to come home and try to get better. I started a home based fashion business, but it was mostly a cover up so that people didn’t ask why I wasn’t working.
This struggle was an extremely hard hit to my pride, which up to this point, fueled everything I did. All my life, regardless of any challenge I faced, I figured out how to overcome it. I never made excuses. Now at 26 years old, I couldn’t even get out of bed on my own strength or complete simple tasks by myself. This shook me to the core, and led to some serious soul searching and a revelation that changed me. I was finally broken to a point that I was forced to find my value in who I was, and not what I was capable of doing.
My sleep schedule by this time was totally backwards I would go to sleep anywhere from 4-8am and wake up anywhere from 2-6 pm. Frequently sleeping for 14 hours straight after rough days and not even getting up during that time to use the restroom. I would have spells where I would lose all muscle tone in my body, collapsing for 15-45 minutes at a time. My husband would just put a pillow under my head and cover me with a blanket and we would just wait it out. I had previously loved public speaking in our business trainings, and did it all the time until I started having attacks out of the blue where I suddenly couldn’t breathe or get the words out. My annoying attention problems that began in high school and college turned into severe adhd, short term memory loss, and other cognitive impairment that would later be diagnosed through testing. This former honor student couldn’t even remember how to get herself ready to leave the house. I would just stand in the bathroom or closet confused and frustrated with myself. I couldn’t drive more than 30 minutes and even for short familiar trips, I needed my GPS on to remind me where to turn. I lost the ability to do more than one thing at a time or learn new things. My body ached everyday like a bad hangover mixed with arthritis and the flu, and any cognitive or physical stress would leave me feeling drunk or high. I became extremely hypersensitive to all sounds, light and movement, and my brain lost the ability to filter out unnecessary stimuli. This made simple things like a routine trip to the grocery store or going to a restaurant with friends extremely exhausting. Going to any large event would put me in bed for days. I eventually learned to avoid public places and social events at all costs.
I researched my symptoms to try to find answers, reading every health book and article I could get my hands on. I would go to my doctor asking for tests like heavy metals poisoning, etc. anything I thought would give me answers. I was on a mission, but they started to think I was crazy. I’ll never forget the day I sat in a doctor’s exam room and she leaned into me and asked “Do you think you are just reading too much into your illness? She couldn’t understand why I wouldn’t just accept my diagnosis of incurable diseases that we didn’t know the cause of and take the drugs. This led me to look into a more naturopathic route, but it was more of the same. They thought I had leaky gut syndrome, candida, lymes disease, Epstein Barre, etc, I tested negative for it all, but that didn’t stop them from selling me tons of supplements.
At this time I had no awareness of post concussion syndrome or the lasting effects of traumatic and acquired brain injuries. Apparently, none of my doctors did either. So after years of research, thousands of dollars in medical expenses, and countless condescending looks from doctors who didn’t understand. I raised a white flag. I didn’t want to give up, but I didn’t know what else to do. My faith in being healed faded as I grow more and more sick. It became impossible to relate to anyone around me. I would put on a strong face and make conversations with friends. I’d pretend to care about things that others got excited about to be supportive, but inside I was completely numb and exhausted from trying to act human when I felt like anything but one. A lot goes through your mind when you reach a place like this. It’s a fierce battle everyday when your spirit wants to live, but your brain doesn’t, and they are both in a battle for your mind. I didn’t want to end my life, but didn’t feel like I had the strength to keep living. I felt bad for my husband that he married me. I thought about the financial stress I was causing, and how he could have lived a much easier life with someone who’s healthy.
You would think living with all of this would have emotional consequences, and it did, but not the typical “mood disorder” one would expect. As a child I had dealt with anxiety for a period of time, and at many times in the past, I dealt with irrational outbursts of anger. When I would research some of my symptoms things like depression and anxiety would come up, because I had all the physical symptoms, like fatigue, sleep issues, heart palpitations, difficulty breathing, etc, but I didn’t particularly feel sad or fearful. In fact, I realized one day that I didn’t really feel much of any specific emotions anymore, not even anger. Granted, I had always been kind of a tough stoic kid, so I was never really one to be considered a “feeler” type, but I did remember enjoying things like good food or time with friends. I remember how certain things used to make me feel happy, sad, or angry, but now I felt more like a robot than a human being. I just did things because I knew they were the right thing to do, but there was no longer a pleasure reward tied to any of it. The best way that I can describe it is: if feelings and emotions were colors, my world faded to black and white.
Sometimes after a collapsing spell, I would have a rush of emotion and cry, but there was never a situational reason for it. It was more of just a random physical feeling that happened as my body was coming back to life. Every once and while something that I can only describe as a physical sensation of hopelessness or the lack of a future flooded me. It was like wave that came over me for few seconds up to an hour and was triggered by things like trying to walk in a grocery store, or drive in a busy place, or physical pain such as a stomach ache or cramps. By this time I knew that it was just another dysregulation in my body and just to hold on because it would pass eventually. I honestly believe that my faith in God, and the strength I drew from prayer and reading scripture were what got me through the hardest days. I know I would have never made it on my own.
One thing I am so thankful for was that my sense of humor always remained. I still had the ability to laugh whenever I had the energy to do so and I made the most of it. My husband and I went out of our way to laugh and found humor in anything we could. It was the best way we knew how to soften the blows of the realities we were facing, and it was the only time he could see a real smile on my face that wasn’t forced.
It was a conscious effort everyday to choose to believe that God would heal me and he would turn my pain into my purpose. I knew I needed to strengthen my spirit and soul faster than my brain and body were failing. By this time I was aware of the vulnerability of my mind and I had to carefully guard it by cutting out all negative news, tv, and social media. I chose to flood my eyes and ears with positive life giving messages all day every day. Waking up to inspirational praise music everyday was, and still is, a way that I take control of my thoughts before I even wake up. I posted scriptures in my house to remind me of my purpose and encourage me not to give up. One day in particular, I heard a guest speaker at our church mention how in Proverbs 31 it says, “She rises while it is yet night.” Meaning when things look dark and hopeless, she rises up and fights. I knew this was encouragement from above to trust just one more time.
I read that faith comes by hearing so I bought a healing affirmations CD and I would repeat them after the speaker. It felt ridiculous to confess that I was healed when most days I was too exhausted to even say the words out loud, but I still did it and just listened on the days that it was too much.
I got up the courage to start ordering my own tests online and one in particular, lead to some answers. I just happened to receive the results right before my husband and I had the opportunity to host a special guest speaker, Dr. Chet, at a business conference. He took time out of his busy schedule to hear some of my story and look over my test results. It showed my amino acids were extremely out of balance and he put me on a ketogenic diet to help balance them out. (I’ve sinced learned that this diet is commonly used to treat brain injury, epilepsy, and other neurological disorders.) Within 4 days on the diet, I was like a completely different person. I had energy for the first time in years and many symptoms were better instantly, but most of all it gave me the courage to seek out a new doctor locally who would take me seriously and figure out what was going on. After being turned down by a doctor who thought my case was too complicated, I found one that at least agreed to try, and she did all the tests she could before referring me to the Integrative Longevity Institute of Virginia to see Dr. Parker, who she thought could help me. He took note of my symptoms, ran some comprehensive tests, and at my follow up appointment the first thing he did was give me a form to fill out about my symptoms after my traumatic brain injury.
Brain injury? I was confused. I had never even told him about any of my accidents, but he knew just based on my test results. He said I was the poster child for post concussion syndrome and traumatic brain injury, and he had already seen extreme cases like mine in patients who were military veterans and football players with multiple concussions. I started to recall my laundry list of accidents, confirming his findings. How could I have not seen this sooner? My only explanation (other than the obvious lack of knowledge that most conventional doctors have about concussions and the lasting effects of them) is the confusion and cognitive problems the brain injuries caused in me. I struggled so much with remembering my symptoms or what happened when and connecting the dots that I was never able to see the forest through the trees. It wasn’t until I wrote an actual timeline of accidents and symptoms, that it all became clear and incredibly obvious.
Then came a moment when my doctor looked at my neurotransmitter test results and shook his head saying that they were the test results of someone who is bedridden and cannot function at all. He was amazed that I was even sitting in front of him with any hope to get better. Most people in the physical condition that I was in would have lost all hope and taken their own life or at least be checked into a hospital. One of the many reasons I feel called to share about the importance of a strong spiritual foundation and the power of a renewed mind is, because I honestly believe that is the only reason why I’m still here.
I can’t say of all things, I expected to be diagnosed with brain damage that day, and I can’t say that I wanted to accept it at first, but it was such a blessing that I was diagnosed by someone 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 showed me treatments that are available for me to get better.
Within a couple months I found myself at Apex Brain Centers in North Carolina for a 2 week brain injury rehabilitation program. It turns out all these weird symptoms that conventional doctors told me were impossible or irrelevant, functional neurologists already are familiar with and even have strategies on how to fix them. I can’t even describe the way it felt to finally know what I was fighting and have a plan to overcome it. I had amazing results during my time at Apex. It felt like I started a new life, but it was just the beginning of long road of recovery. I currently keep up treatments and therapies here locally in between traveling to the brain center and other specialty clinics which I’ll go into more in this blog. Healing from brain injury is quite a journey. It takes hard work, time, and a ton of patience and is full of both exciting highs and devastating lows along the way, but at least I know I am finally traveling in the right direction. My dream is to take as many people on this adventure of hope and healing with me as possible.