My name is Meghan Bayer and I might as well be the next feature on the TV show "Mystery Diagnosis". Actually, I have a better idea. Paging Dr. House!
For the last four years of my life, I have lived the life of a medically complex teenager. I live near Pittsburgh, PA, a city known for its healthcare systems and technological innovation. This begs the question of "If this city is so medically and technologically advanced, then why don't I have a diagnosis?" I wonder that myself every day.
In the last 6 months, the treatment plan that has been working so well for the last three and a half years suddenly stopped working. It wasn't a pleasant treatment and it took 5-7 days, sometimes longer inpatient, but it worked. In December 2015, it failed and I was left with the question, well now what? I was started on higher doses muscle relaxers, which take the edge off the daily struggle and allow me to push myself in a manual wheelchair. It barely takes the edge off for me, yet the medications at the dosages I require would sedate full grown men twice my size. Me? I'm a fully functional college student (minus the ability to walk) earning good grades and (attempting to do) martial arts from my wheelchair.
Without the ability to walk due to severely contracted muscles in my lower legs, I can't drive myself anymore. This has resulted in a loss of independence I can hardly stand. Most of the fights I have with my parents related to my health in some way (driving me to martial arts, disagreements over how I should be treated, and my overwhelming desire for hand controls so I can have my independence back, etc.). I've honestly probably fought with my parents more in the last 166 days than I have in my whole life. I've always been the good child in the family. Asking for help makes me feel like that has changed. My younger brother zooms off to school, lacrosse practice, and hangs out with friends whenever he wants. My dad has the immense responsibility of working so we can afford to live and bears the burden of having a sick teenager. My mom works a casual position in the ER, but rarely has to work a shift. Most of the time, she is cleaning, running errands, or caring for our five dogs. Yes, you heard me right. 5. Then, she too has to shoulder the burden of a sick daughter.
While we desperately search for a diagnosis, I helplessly watch the opportunities, like study abroad, pass by. If that's not depressing, I don't know what is. Okay, that's a little dramatic, but my point is I shouldn't have to be a prisoner in my own home and have to ask someone to take me to taekwondo, doctors appointments, or to grab me some dinner somewhere when food in the house runs out and we need to do the grocery shopping. Grocery shopping used to be my job and probably one of my bigger contributions to the household.
If I have to be a 19 year old fighting with my parents about something, can't it be about curfew, parties, or something more typical.
So now I find mom and myself driving 24 hours round trip to see this specialist at Mayo Clinic. We have to start our drive on May 8th (Mother's Day AND her birthday) to be there in time for the appointment on May 10th. Flying is not an option for several reasons, mostly because I require so much equipment from a wheelchair to a shower chair. Not exactly things that can be stuffed in a suitcase.
All I want is to walk again. Every day, my prayer is "Dear God, please let me walk and be independent again" and I know the prayers of my friends and family are similar.
All I want is someone to drop me a rope pull me from the land of undiagnosed. It's really lonely down here and the medical system combined with insurance are frustrating me beyond belief.
Monday, August 12th, 1996, 4:29 AM. Pittsburgh, Pennsylvania. A large 9 pound, 9 ounce baby came screaming into the world. She had all her fingers and toes and her parents could not have been more proud of their perfect baby girl. That perfect baby girl was me.
They took me home and I was the center of their world. I was constantly showered with love. I am told that I was that baby that every parent dreams of; always happy and sleeping through the night. I was (and still am) blessed by two very loving parents and I had a very happy early childhood. We loved to travel and I love looking back at all pictures we have from before my actual memory starts.
Just over two years after my parents had me, they gave me the extraordinary gift of being a big sister. My first day as a big sister, let’s just say that I wasn’t too happy in my new role. After a while, I learned to love being a big sister.
As I went through my toddler years, I hit all my developmental milestones and even though I never crawled, I scooted on my bottom and man was I fast. Around the age of three and a half, my parents started noticing that I was always turning my right ear to the person speaking. Being a physician, my dad insisted that it was behavioral and it would pass. My mom and grandmother felt differently. Something wasn’t right. I was not reacting to sound the way the normal hearing child should.
My parents took me to my pediatrician who agreed with my dad; this phase would pass. Because having my hearing tested was so simple, he referred us to an audiologist.
My mom recalls that I sat on her lap and she could hear all the beeps, wails, and other tones that I was not responding to at all. On September 28th, 2000, at the age of four, I was diagnosed with bilateral moderate-severe sensorineural hearing loss and immediately fitted with hearing aids. At the time, the etiology of my hearing loss was unknown.
Denial and Moving Forward
When I was first diagnosed, my parents’ worlds’ were shattered. My dad continued to be in denial and all my mom could do was hold me and cry. I think they felt I would somehow be limited in by abilities. As a way to recover and accept the diagnosis, we started taking family sign language classes which we all enjoyed.
As soon as we found out that I had a hearing loss, we started receiving early intervention services. To me, it was playing with a teacher three days a week, but her impact was so much more obvious once I reached my school years.
We quickly came to realize that many generations of my family from my great-grandparents all the way up to my dad, brother, and I had hearing loss, which meant that I had indeed been deaf since birth. The congenital hearing loss runs all down my dad’s side of the family. My brother’s hearing loss was discovered about a year after mine, but his was so mild, his hearing aids spent more time in the bottom of his book bag than in his ears. When he was ready and his hearing loss progressed, he come learn to love his hearing aids and even advocate for hearing protection. He had to come to terms with it in his own time, as did my dad.
My whole education, I have been mainstreamed in a private school. With the help of an IEP, allowing me to use an FM system; in addition to accommodations like preferential seating in the front row and to one side to allow me to lip read, requesting that the teacher put homework assignments on the board, and putting tennis balls on the chairs, so I could still hear even if a student moved their chair. As my hearing worsened, I also requested that closed captioning be used (especially if the material contained in the video would be used on the quizzes, exams etc.)
I had a very typical childhood. My mom drove me to school, Girls Scouts, soccer practice, dance, gymnastics… You name a sport and I have probably at least tried it. My days were filled homework, playing outside, and evening swimming lessons. Every once in a while, a Saturday afternoon would be spent at a birthday party. I was a well-behaved student that had earned the respect of all of the teachers, faculty, and staff. I maintained straight-A’s (except for math; that was always a B) and regularly made the honor roll.
At school, I had a hearing support teacher come in for a half hour twice a week during school hours to troubleshoot my equipment, review math skills, and occasionally play fun games. For the most part, I never felt any different than the other students; after all, I had been going to school with them my whole life. It was all that they knew and it was all I knew.
Middle School and Self-Advocacy
In 5th grade, my family moved two hours away for my mom and dad’s new jobs. In this new school, I didn’t know anyone and I was very shy. If someone asked me about “those things on my ears”. I would stare at the floor silently. Everything was different. I had a locker now. A bunch of teachers that didn’t fully understand my needs and a new hearing support teacher. I lived in a new city and making friends seemed like an impossible task. To make matters worse, I had to deal with my first real bully. Not only would he call me names, but he would kick me, shove me, intentionally hit me in the head with hockey sticks, stab me in the arm with a pencil, and slap me across the cheek. I always told the teacher and the principal, but they didn’t care, because they didn’t see it. It was kind of hard to miss the pencil marks, bruises, and red welts on my body. When I defended myself from getting hit by a hockey stick, guess who got detention. Me. He made 6th and 7th grade the worst years of my academic career. When he left the school in 8th grade, I was glad that I wouldn’t be abused daily and I had the best year with my very close class of just 11 students. That was a truly wonderful year.
During this time, I was receiving the same hearing support services that I had received earlier. Only this time, I was a little terror and I wanted nothing to do with hearing loss, self-advocacy, and learning about the anatomy and physiology of hearing. I remember just sitting in sessions crying from being tired from working so hard to hear. But this teacher worked with me from 5th grade to 9th grade tirelessly until I finally found the light and learned to advocate for myself. To not be afraid to explain my hearing loss, hearing aids, and my story. She is a huge part of the writer, speaker, and advocate I am for those with hearing loss/deafness.
This is just a word of caution I would like to share. In kids’ middle school/junior high years, they may become a little rebellious when it comes to their hearing devices. I can tell you from personal experience that it was because I just wanted to fit in with my classmates. After years of hearing support after school and dragging my FM system from class to class, I was just tired. Fortunately, it is just a phase and eventually, with your love, education, and patience, they will come to learn the importance of the devices and the benefits of self-advocacy.
Cochlear Implants and High School
Never let anyone tell you that you’re incapable of doing something. I have accomplished things beyond my wildest dreams and I would not have had the courage to attempt them without the unconditional love and support of my family. I attended a mainstream high school and I had hearing support services until the end of 9th grade when my teacher retired. With the advocacy skills in hand and the support of my IEP, I conquered high school.
Through the years, my hearing became progressively worse until I was profoundly deaf in my left ear. Although I was devastated to have lost my hearing, it was at this point that I met the surgeon that would change my life forever. I underwent the placement of 2 cochlear implants during the summer of 2010. With intense therapy, I successfully learned to hear. I was constantly amazed at my new hearing world. I could hear my mom calling me from the across the room. I could talk on the phone for the first time in my life and I was able to hear my teammates on the basketball court and the soccer field. With the increased ability to hear, my academic success improved dramatically and my confidence soared. I received my second implant just days before starting my freshman year of high school.
In order to fulfill my school’s foreign language requirement, they offered to let me take ASL. I politely declined and stated that I would be taking French. I was at or near the top of my class all four years of French. My sophomore year, I was given the French II Award for the highest academic average in my class. This goes to show that if you work hard, anything can happen!
During the summer between my junior and senior years of college, I took an Emergency Medical Technician (EMT) class. I excelled in the class and it was one of the best experiences of my life. With the help of my very special stethoscope that connected to my hearing aids, I could take blood pressures and listen to lung sounds and bowel sounds. This is one of my achievements that never fails to amaze me. Eventually, I took my medical skills to the ski slopes and served as a ski patroller. The sound of a call coming over my radio always got my adrenaline going.
Hanging out with friends, homework, community service and year-round basketball ruled my life. I loved it! I was inducted into the National Honor Society after a rigorous application and interview process, served as the President of the school’s service club for grieving families, made blankets for child in local hospitals, and enjoyed helping out with various school events throughout the year. By my senior year, I had over 800 service hours and I was awarded my high school’s highest honor for my scholarship, character, service, and commitment. I graduated with highest honors, a varsity basketball letterman, and as a member of the National Honor Society.
College and the Present
I chose the college of my dreams, because it was a top-notch education not terribly far from home. I actually committed to the University of Pittsburgh before I even toured the campus. I knew what I wanted in a school and I knew Pitt could give me the experience. Let’s call it a gut feeling.
I am a sophomore and I work with a fantastic disabilities liaison who helps me to handle those professors that just don’t want to make perfectly reasonable accommodations under the Americans with Disabilities Act. Fortunately, there have only been two professors so far, but I have learned with how to deal with them and when to seek the help of my disabilities liaison.
Today, I can confidently tell you that our deafness will never be an excuse for myself or any of my family members. My present goal is to earn my degree in Communication Rhetoric, minor in the Administration of Justice, obtain a certificate in National Preparedness and Emergency Management, and further my medical knowledge by becoming a paramedic. It sounds like a lot, but I’ll get it done because there are no excuses! While I am by no means fluent, I do attend our ASL club on campus and continue taking classes to continue to experience the best of both worlds.
Looking back on the journey, I am thankful that my speech was completely unaffected by my severe inability to hear during the prelingual period, which is something doctors just simply can’t explain. I would not change any of the decisions my parents made. They were (and still are) excellent advocates for me and my deafness, even though I do most of the advocating myself now. I am grateful to my parents for exposing me to the Deaf Culture and for early exposure to an introduction to very basic sign language as a family. I would not be where I am today without the help of each and every single person on my journey.
As a 19 year old, what did you worry about? What sorority is throwing the next party? Who was dating your crush? What's for dinner? Who's clearing the full sink in your apartment? What did you get on that calculus final?
These are all valid and typical concerns of a 19 year old from my perspective. I wish that college, work, a social life, and whatever else I chose to include in my life was all I needed to worry about. Instead, I have been given a different hand. A hand far more challenging than I ever imagined and a hand I wouldn't wish on my very worst enemy.
For almost 5 years now, I have been fighting a battle unlike any other. It is a battle I cannot fight alone. I tried, but I do not possess the skills necessary to fight and win the war alone. In the last four years, I have had countless hospitalizations, surgeries, and procedures to control my sometimes uncontrollable body.
My whole life, the only thing I had to be concerned about was my deafness and managing my hearing aids, which became cochlear implants in 2010. That is until I developed Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS) in my hand in 2012. With that diagnosis came 28 weeklong admissions to date, countless prescription medications, and even more diagnoses. Anyone with a chronic illness will tell you it is nearly impossible to only have one chronic illness.
Sadly, I have found that to be true as the RSD/CRPS has ravaged just about every organ system in my body. Up until now, I had always been protected by my parents' insurance plan. Now that my problems have become so complex, my doctors are demanding that I see a particular specialist not covered by my insurance to diagnose an extremely rare condition known as stiff person syndrome (SPS). They refuse to treat me until I see this specialist. To see this specialist, I have to travel 8 hours away, stay in a hotel for up to a week, and have all the testing that this new specialist could potentially want done, in addition to the cost of two people being away for a week. All without insurance coverage.
At 19, I've had a job where I woke up at 5:30 in the morning, worked until 7:30 at night, often not getting to bed until 10pm while taking summer classes online. To most it would sound like torture, but for me, I would do anything to have that job as a waterpark lifeguard again even though it was barely a minimum wage job.
This summer, I find my family faced with a 2 hospital bills of an unknown amount of money. I can't work or function optimally for school until this condition is diagnosed and treated, which makes matters even worse. I can't make money to help my family help me. I am wheelchair bound and unable to drive due to high doses of medications.
I don't want to have to worry about my family's long term financial security because of my poor health and expensive medical needs. We should be worrying about normal things like college and summer vacations. As this appointment with the specialist approaches, I feel very cornered. Without this specialist's diagnosis, I don't get treated by the doctors in my insurance plan. Without treatment, I am stuck. I feel like every day I have to worry about something related to my health. I always feel the need to sacrifice something to reduce the financial strain. Everyone tells me not to worry about the money, but it doesn't grow on trees. I don't want to put myself or my parents in a bad financial position.
All in all, a 19 year old, hardly a kid, but barely an adult, should not have to worry about the medical bills on top of their poor health. No one should actually, but I kind of wish I could enjoy the young adult "spend what you make" lifestyle where occasionally mom and dad throw in a few extra bucks. Unlike many my age, I am not an entitled individual and I work hard for what I have. I can't wait for the day that I have more than $94 in my bank account and I can say that I have worked hard to earn it.
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!