My Journey to Jesus
My Journey to Jesus
My name is Meghan Bayer. I am 25 years old and I was born on August 12, 1996. Life was average growing up until I was diagnosed with bilateral, congenital moderate-severe hearing loss shortly after my 4th birthday on September 28, 2000. My childhood was unremarkable growing up in Western Pennsylvania. I had access to hearing aids, a family that loved me, a younger brother (who is also deaf) who drove me crazy, and our dog, Peaches. I had an awesome childhood!
When I was 9 years old in 4th grade, my parents could not figure why I was acting out 30 minutes after getting home from school. According to my teachers, I was a pleasure to have in class and they were not concerned about my behavior or performance in the classroom. After a while of thinking I was being a naughty child, I was diagnosed with anxiety, depression, and obsessive-compulsive disorder (OCD). I was constantly worried that something would happen to my mom leading to her untimely death. It was ridiculous but try rationalizing without an anxious child. It does not work. I think the depression came from the way society treated me, combined with family history. I was obsessive about washing my hands and making sure I had done things like flush the toilet non-stop.
All day, I would internalize anything and everything that stressed me out. Then, my mind would wait until I was in a “safe place” to let it all out… which was unfortunately always on my parents. Punching, kicking, scratching, spitting… I am not proud of it, but it is what happened. My parents would force medication in mouth, force me to swallow it, based on my treatment regimen by a child psychiatrist. I was a really strong child for a 9-year-old. It strained our family and my dad would only work the night shift, so he could help my mom, because I was almost “superhumanly” strong.
Combined with past family medical history, genetics and my sociological development, it created the perfect storm. I was told I would need to take anti-depressants and anxiolytics for the rest of my life. After two years working with a child psychologist, I came off all medications and coped with stresses of life by playing sports, warm baths, and blowing off steam/anxious energy before starting homework. I cannot imagine being told all the times I was going to hell for not doing something helped me at all in the mental health department.
When I was 10, we moved from Johnstown to Pittsburgh. That was a psychological and sociological disaster because no one understood that I could not hear them. I got really used to hearing “Never mind,” after someone cracked a joke in the lunchroom or on the playground. It was isolating. By age 11, my hearing was on the decline and I was trying so hard to function. I would have such severe auditory fatigue from fighting to hear my entire school day and after school for musical, sports practices, and Girl Scout Meetings.
When I was 12, my left ear stopped perceiving all sound with my hearing aids. I will never forget going to into surgery the week after the 8th grade English Festival and the 8th grade play “Annie Jr.” I remember there was one song I had to nail on the beat, but I couldn’t hear the music in that range. I used my hand to tell me when the music started a crescendo counted to 5 and walked from one side of the stage, said my part, and walked off. I was feeling the music in my body to keep my rhythm. Watching it on video, all these years makes me giggle, but ask the director if she got frustrated every time I missed my cue, absolutely, yes! Plus, I was quadruple-casted!
May 18, 2010, I had my first cochlear implant surgery. I was activated in June the day after my grade school graduation. I lost the remained of my hearing overnight in July 2010, so on my 14th birthday, I was told I would need to get a cochlear implant on my other side. I had the bilateral surgery at the end of August 2010 and I was activated September 28th, 2010; exactly 10 years to the day that parents found out that I could not hear in 2000. Yes, I did that scheduling on purpose!
This brings me to high school. When I made the decision to get the cochlear implants, I was deciding to stay mainstreamed the same way I had been all my life over learning to speak ASL as my primary language. ASL is a secondary language for me, but it is not my first language. In high school, I took 4 years of French including College in High School French senior year. Academically, it was like someone turned on a switch when I was activated. French came very easily to me. I was ahead in math and science. I was an average language arts and literature student. I was good enough at school to be in the National Honor Society (NHS), Student Ambassadors, freshman girls soccer manager, along with JV and varsity girls basketball. I also enjoyed ski racing, but that got me in so much trouble when I did it during basketball season! I had to run 30 full-court suicides to make myself eligible to play again per team rules. The number of times I threatened to quit the team was kind of outrageous. I hated getting punched in the shoulder my head JV coach and the varsity coach was not my biggest fan.
During the 2011-2012 basketball season, my coaches went against the athletic trainer and played me the entire game. 32 minutes of 32 minutes at Quaker Valley. The athletic trainer said, “do not play her more than half the game.” 4 of the people that started the game with me got in foul trouble in the first 4 minutes… so I had no choice but to play the game of my life. I did just that and the other team started intentionally fouling me, sending me to the foul line, where I drained most of the shots with ease. I remember trying to coming to a complete stop when the buzzer went off at the end of 4th quarter. I had sprinted for over an hour and my legs just gave out from under me. The knee injury I had sustained in December 2011 took months to heal, but I begged my doctor to clear me to play for the WPIAL section title with my team. I was dressed, but I did not play in that game. To this day, normal sensation has not returned to my common peroneal nerve on the left side of my left knee.
Summer 2012, I was playing basketball daily, getting ready to take my permit test to drive, about to start junior year, and before all that could happen, everything came crashing down after I received one dose of the original Gardasil HPV vaccine on August 24, 2012. Very quickly, I was thrust into a world where my body hurt constantly and I had the most unimaginable fatigue that was unable to be fixed by any amount of sleep. The diagnoses kept piling on. Every month it seemed like there was a new diagnosis and every month, that new diagnosis would leave me reeling; desperate to cling on to any sense of “normalcy.” (Hint: There’s no such thing.) I knew that my teachers and professors understood the ramifications of what I was going through, but it rarely made things any easier. On April 30, 2013, my cousin called me to chat while I was waiting to go to the OR. The last song I listened to was “I Can Only Imagine.” Chills, anyone?
On this day, a nurse who I refer to as Miss Lisa saved my life. When I went into respiratory arrest in became severely acidotic I shouldn't have survived but I did; thanks to the pediatric intensive care unit staff at Children's Hospital of Pittsburgh of UPMC. I remember thinking “I'm dying” and it was a scary thought, but it showed me what I regretted in my life. I remember thinking Lord please don't take me now. I haven't gotten my driver’s license. I have not gone to a high school dance yet, but most importantly I haven't made a difference in this world yet. I remember saying an act of contrition just in case, because if those are my last words on earth, I wanted them to be devoted to God. I saw my life flash before my eyes and for the most part, I was happy with what I saw. And so, on this day, I want to thank everybody who has played a major role in my life I love you guys, and even the people that have wronged me thank you for making me a stronger person because I wouldn't be the person I am today without all The people in my life. Even though this was a scary experience, I wouldn't have learned many of the things, l learned without this experience. To anyone whose struggling with something today, choose to trust God.
It was a perfect storm with my mom not being in the hospital room with me to realize that something was going on. My brother’s Spanish teacher would not grant my brother an extension on his eighth grade final Spanish project, so my mom had to be a mother to a acutely sick child and a mother to a child in school. It has taken me years to find it in my heart to forgive but this teacher who knew me and taught me in grade school, to just turn her back on our family in our hour of greatest need. Even when I hear her name today, it makes me cringe knowing that all of the additional pain and suffering that I went through with that hospitalization could have been prevented if she had just given him that one extension on his final project. As much as I would like to be the perfect Christian and say I have it all figured out, I do not and I struggle with forgiveness just like everybody else. In fact some days I think I have forgiven her and some days I clearly have not forgiven her. It just seems so silly to me that the price of my life was in eighth grade Spanish project. An eighth grade Spanish final project. Let that sink in.
And there are still people today that I will probably struggle with forgiving for the rest of my life because they chose to abuse my parents trust and I am a survivor of medical child-abuse. This medical child-abuse was at the hands of the children’s Institute in Pittsburgh and my parents had no idea what was going on the majority of the time. My cell phone was confiscated for noncompliance and I was constantly told how everything with my legs was “all in my head.” I would not wish that kind of abuse on my worst enemy. The problem with medical PTSD is that in order to keep our bodies running we are forced to go back to the same people that have abused us over and over again. We have to endure the same procedures over and over again. People that we should be able to trust… That trust is practically gone! What am I supposed to say when I am told that I need yet another procedure or another traumatic test? No? Unfortunately, it does not work like that, and I have to go back into the same setting over and over again. I think what is lost on a lot of people is the fact that I was just 16 years old when this all happened. I was a junior in high school for cry out loud. I was not allowed to state how I felt to other people because that was a violation of the terms of agreement of The Children’s Institute and the success of the program… or so they said. But I am calling it what it is… medical child abuse.
I graduated high school with the highest of honors and went off to the University of Pittsburgh in the Fall of 2014. During that time, I continued to receive medical treatment for the numerous conditions I had contracted as a result of the Gardasil HPV shot. In 2015, around Thanksgiving, my doctors began getting suspicious that I had a rare variant of a neuroautoimmune disease called Stiff Person Syndrome (SPS). When they found out that I had the rare antibodies associated with the condition as well as antibodies against my thyroid and my pancreas, the index of suspicion increased. In early 2016, I was referred to the Mayo Clinic in Rochester, Minnesota. I will never forget showing up in Minnesota with a check that could be written out for $5000 if any of my test were not covered under my insurance.
My mom wrote this to me on Facebook on February 14, 2016: “Meghan Bayer, words cannot express my love for you. Praising God for giving me the privilege of being your mom. I may have taught you these things, but it is you who exemplify these qualities so beautifully. I know that life is hard, even more so for you, but you always have a positive attitude looking for the good in even the worst of your challenges. God has so richly blessed us and continues to do so even on our darkest days. Lyttmab!”
First we met the doctor, he told me it was a functional neurological disorder, and not much more could be done. To say I was frustrated would have been an understatement. When we left the appointment I asked my mom what the doctor had said and she said that he had basically said what everybody else had said about my case.
Anxiety, conversion disorder, FND, psychosomatic illness, attention seeking… I had heard them all at that point, but this one seem to hurt the most. This was supposed to be one of the smartest SPS neurologist in the United States and he just bombed my diagnosis! When my mom and I got back out to the car, I was so agitated and upset that I screamed my head off. My mom decided right then and there that we would be going home the next day. We would be on the next flight back to Baltimore, Maryland. Thankfully after a nap, and some rational thought, we decided to go through with the testing the following day.
I had a full day of tests where they claimed they could not find a single thing wrong with me. They said everything that was abnormal was because of anxiety. Things that anxiety could not cause anxiety seemed to cause in this case.
On May 6, 2016, my mom birth this message to me on Facebook: “Thank you, Meghan Bayer. As I type this through my tears, I know how very difficult our lives have been of late. I will travel to the ends of the earth to find the best care possible for your very rare neuro autoimmune condition. I admit that traveling to the Mayo Clinic this week is a little intimidating but I also know that we are not alone. Not only is our Almighty and ever loving God with us always but we have our special guardian angel who loved you, Evan, and Brie more than life itself. Together in faith and love we will charge the mountain! You and Evan are my most precious gifts and I am so blessed to be your Mom.”
That was until my mom went to try and wake me up for my follow-up appointment with this so-called expert. To her surprise, I was completely unresponsive, as she threw me on the floor of the hotel room like a ragdoll. Paramedics were convinced that it was an opioid overdose but I did not respond to naloxone/Narcan nor did I take opioids. It turned out that I was having a catastrophic 32 hour seizure that would not stop even after administering general anesthesia for over 24 hours. The prognosis was grim at that point. I cannot even imagine what was on my brother or my dad’s mind at that point driving from Pittsburgh to Minnesota; a 14 hour drive easily. Each day that my mom and I were at the Mayo Clinic, we were reading “Jesus Calling” by Sarah Young.
Sometimes I have to wonder “what if” I had not gone through with the testing at the Mayo Clinic and I had come home that day that I did? Would I have survived? I would have permanently damaged my credibility as a patient, but that is pretty hard to do when you have no credibility as a patient anyway. My diagnosis story is one of the most indignifying situations imaginable. I cannot help but wonder what my life would look like if I had stopped 10 feet short of the goal. I fought tooth and nail for every inch of those 10 feet. By the time I got to the goal, my family and I had been through the ringer.
Throughout this story, you may have noticed that I talk about God and faith a lot before November 18, 2018. I remember that that ICU room was so dark and almost damp. I felt like I was in a “personal hell on earth,” so when my feeding tube finally clogged, my blood sugar dropped, and I decided that I did not want to live this life of pain and suffering anymore. To put it quite frankly, I was done. If it were not for psychiatrists blocking my motion to have my life end on its own terms, I probably would have died later that night. But as my story has done so many times before, there was a twist. For the first time in my life, God reached out to me in the most unimaginable horribly painful circumstances and asked me if I would follow him. Now little did I know what I was getting into at that time, but that is both the challenge and the beauty of Christianity is that you have to do it every day. Even when you prayed 100 times you have to pray 100 times more. Even when you have studied of Bible passage dozens of times there is still dozens of more messages from which a Bible passage can be learned from. So many times in my life I have wanted to quit, but what I have found is every time I have threatened to quit, if I just waited a little bit longer I would get my answer; I would get God’s answer!
On January 23, 2019, I was officially diagnosed with pediatric-onset stiff person syndrome after seven years of waiting. And the irony in all of this is that the answer to our prayers was in Baltimore, Maryland the entire time and remains there to this very day. On May 18, 2021, I officially took the first step to being a full believer in Jesus Christ. Not because the Roman Catholic Church told me I needed to, not because my parents told me I had to, I wanted to do it as a public statement of my belief in Jesus Christ as my Lord and Savior. I have since turned my back on the Roman Catholic Church and all its false teachings. Because if there is one thing, I know that is true, it is that no man or woman is 100% infallible. To say that Rome and the Pope are infallible is just not acceptable to me personally. I do not have a problem with the institution of the church, I have a problem with the Roman Catholic Church and other sects of Christianity like it. That at the end of the day, if you have a personal relationship with Jesus Christ that is all that he asked for. He asks for our hearts, our minds, our souls, and our strengths.
As a former member of the Roman Catholic Church, I do not pass judgment on anybody who identifies as such, but I would strongly urge them to consider what they are being taught and what they are being told to believe. If it matches up with your beliefs, wonderful! However, it does not match up with mine. I have more of a relationship with Jesus Christ now then I ever did as a Roman Catholic.