The last couple of days, I have had the opportunity to do some serious reflecting on my journey and everything that has gotten me to this point. The first thing I have to say is, I'm grateful. Grateful for the family that has stood beside me unconditionally. Loved me unconditionally. Grateful for the endless support of friends and the support of their friends, etc. I know that my story has traveled all over the world at this point via Facebook, The Mighty, my blog, and more. Grateful for the doctors that helped me get through each day and worked to give me the best quality of life possible and yes, I'm even grateful for the doctors that epically messed up, because without them, I wouldn't have as much meaning and purpose in my life. My entire senior thesis in communication is going to be on rare diseases and the process that patients go through to get a diagnosis. But it wouldn't have gotten to this point, without all the epic failures and mistakes. In some small way, each of those failures, nasty comments, and unrevealing tests, has helped to mold me into the person I am today. I'm stronger because of it all. Less naive to some of the world's problems. More willing to listen and help when I can. More open-minded. Less critical of others (usually, I'm still working on that!). Grateful to everyone that has gotten me to today, April 30, 2017. All the professors and teachers, all the other medical personnel, all the people that have prayed for me that I don't even know exist (and I know that they are out there!), all my academic advisors... Simply put, everyone. Everyone has a place in this battle I call my life.

I'm also angry. There is still a vaccine out there that is still being given to young people each and every day, and plunging perfectly healthy individuals into the battle for their lives. And for what? The efficacy of the HPV vaccine is in serious question and the risks (in my eyes) do not outweigh the benefits; not by a long shot.

The devices that have been used to keep me alive and thriving to this point, my cochlear implants, feeding tubes, my trusty port (near and dear to my heart literally), ventilators, countless IV pumps, and the list goes on, aren't available everywhere in this world and it would be naïve to think otherwise. Yet, that same vaccine that was shoved on me five years ago, is getting shoved on children in third world countries who could only dream of the medical care that we have available in the United States.

It has been a long road to get me to today, April 30th, 2017, exactly 4 years since my first brush with death and nearly 5 years since the vaccine that turned my young life on its head. Dreams were shattered that day and new ones constructed in its place. Hearts were broken and repaired in the same 30 seconds. Oxygen was deprived from the same body that yearned and fought to stay alive. Just barely, but alive.

I'm actually not even sure what this piece is supposed to be about at this point, but I had some important points to make and I'll publish this post the same way I've published so many others. Trusting that it will find its way into the hands of an individual that can do something with the struggle and make it something bigger.

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There is currently one final standing between me and officially being considered a junior in college. Chronic illness have pushed me a semester behind everyone else my age, but with my summer classes and the fall semester, I'll be a senior in December 2017. Pretty exciting stuff if you ask me. It's not been an easy road.

As I'm preparing for the last final of the term and the beginning of the summer term, I wanted to review the last 32 weeks. My year started out with a designation to the Green Team and an early move-in to 222 Ruskin Hall. It was a single and fully ADA compliant. Just perfect! My mom, dad, aunt, uncle and I spent hours moving me in, cleaning, and decorating.

I served my Green Team assignment and I had blast for the third consecutive year. It's become a bit of a tradition for me at the start of each academic year.

Eventually classes started and I loved each and every one of them! The difficulty was just right.

The following week, my cousin came into town and she cooked for me in my new apartment, with all my new stuff. Everyone swore that I would be eating out every single night, because I stink at cooking, nor do I have a desire to do so. Well, guess what?! I cooked 98% of the time and I got the occasional Chik-fil-a from the Cathedral Cafe. Not too bad for someone that is clueless in the kitchen!

Then, Labor Day weekend came and went. The day after Labor Day, I got up for my 10AM Mass Communication Process class when I went to put on my cochlear implants. My right cochlear implant sounded... funny. I couldn't really explain it, but being late for class, I didn't give it much thought. As the day went on, the sound got worse and by the time I got to my taekwondo class at 8:15 that night, I couldn't hear anything out of that ear. I thought it was just a processor issue, so I pushed it out of my mind until I could swap around pieces. But after swapping around pieces and processors, I realized this wasn't just a small external problem. I emailed my cochlear implant audiologist who told me to come in. She quickly realized that this wasn't a small problem either and contacted the surgeon and a representative from the company.

Life went on while they tried to figure out my implant issues. I ended up getting my wisdom teeth out on October 28th, which triggered a massive CRPS flare that got me admitted. Then November 12th, I competed at a regional taekwondo tournament in Cleveland, Ohio where I finished very strong. Two days later, I was back in the wheelchair and forced to reconfigure my material for my 2nd Degree Black Belt-Recommended test.

School continued and I made a 4.0 for the semester and got on the Dean's List for the first time ever. That evening, I tested and passed my 2nd Degree Black Belt-Recommended Testing, which was exciting.

Winter break flew by, and before I knew it, it was already time to head back to school. I got some good classes and a good schedule, but I was worried about my ability to do well in some of them. The professors were intense and the lecture styles very different. But I persevered, and around midterms, things started to look up.

I was scheduled to get my cochlear implant explanted and reimplanted on April 5th, 2017; a day that I looked forward to and dreaded all at the same time.

In the middle of January, my muscle spasms took a turn for the worst and I knew I had to do something and soon. I started calling doctors all over the country until I found some that would take me on as a patient. That led to several trips to Cleveland to University Hospitals, a trip to Stratford, NJ to Rowan University Medical Center, and to some doctors in Pittsburgh. I juggled all of that in addition to school, work, and taekwondo training for my 2nd Degree Black Belt-Decided training.

Kept making good grades and finally, the cochlear implant surgery rolled around. The surgery was easy, but the recovery was a nightmare. A few weeks passed and I took 4/5 finals and passed my 2nd Degree Black Belt-Decided testing and was admitted to the hospital for IVIG where I am currently today. I have one more final to take May 1st or 2nd, but I currently have a 4.0 going into that final. I'm hoping to stay on the Dean's List this semester.

It's been a long and hard year, but I've had the opportunity to prove to myself that despite my health, I can still accomplish my goals and do well in school.

So Farewell Ruskin 222 and Ruskin 211, I'll see you in the fall when I come back on the Green Team!

My recent cochlear implant explantation and re-implantation was rough to say the least. To control my pain, I was put on a ketamine PCA. Ketamine has a known side effect of hallucinations. When someone walked in the door with a gigantic teddy bear, I thought I was hallucinating.

As it turns out, I wasn't. My brother actually bought me a bear that was almost as big as me.

While the bear was a nice touch, the letter he wrote for me even more.

Dear Strongest Meg,
"The toughest battles are always fought by the strongest warriors." That is exactly what you are, a warrior. You face adversity on a level that people can't even begin to fathom, yet you do it with a smile on your face. You have this beautiful gift of finding the good even when facing hardships. There are only a few people in my life who I genuinely look up to and you are at the top of the list. No matter what you're going through, you are still able to do extremely well in school, work, compete in Taekwondo competitions, volunteer and a whole other list of things you're involved with. You made me want to apply to Pitt because I wanted to be like you and when I got in I was so incredibly happy. I felt like I had finally accomplished something great! In these coming years I will definitely always have you as my inspiration when I struggle through hard times in college. I'll think to myself: What would Meghan do? You helped me to realize what my purpose is. And that purpose to is help others and give them the courage, strength and perseverance you have always had. You're the strongest person I know and I know you are going to do so much good in the world.(you are already making a difference, but I digress.) Always know that I am here for you any hour of the day, week, month, year, decade. Forever. Thank you for believing in me when I had lost faith in myself. Without you I am not sure who I would be.
Much love from yours truly,
Ev ❤️

I mean who wouldn't bawl after reading that?! I surely did!

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This is an academic paper I wrote in the Summer of 2015 for a Sociology of Health and Illness class. I recently came across it and I saw some good points. I would like to revisit it, sometime in the future and continue my research.


Meghan Bayer
University of Pittsburgh
Sociology of Health and Illness
Summer 2015 Term Paper

RUNNING HEADER: MASS MEDIA REPRESENTATION OF HEALTHCARE ENVIRONMENTS  1

In today's world, mass media has a very powerful effect on humans. Too many people start to believe everything they hear whether there is any truth in the portrayal or not.  Also, many forms of mass media are "twisted" to help further prove a point, whether the facts are accurate or not. Over the years, Hollywood has given us some very precise depictions of the workers in the health care setting and some not so accurate. Two such films provide some example of both representation and misrepresentation of employees and relationships in the health care system.

Patch Adams is the light-hearted film featuring Robin Williams as Hunter "Patch" Adams. A patient at a mental institution after attempting to commit suicide, Patch applies to medical school where his strong interpersonal communication skills and genuine care for the patients threaten to be corrupted by the iron-fisted influence of the dean of the medical school. While his methods for cheering up the patients are considered illegal, they did not mind as they were in an overall better mood and needed to take less pain medication.

Based on Oliver Sacks' memoir, Awakenings is another movie featuring Robin Williams, but this time, the environment is much more severe. When an outbreak of encephalitis lethargica sweeps across the United States from 1917-1928, many people quickly died. For those that survived, they were left profoundly disabled by the infection. The disease left them in a catatonic state, and for many years, doctors and scientists were unsure of how to retrain the brain to communicate with its environment. In 1969, Dr. Malcolm Sayer administered a new type of drug known as L-Dopa, which allowed these patients to come out of their catatonic states. The end of the film shows how many of these patients are then forced to live with new lives, after decades of lives vanished before their eyes.

On Patch Adams' first day of medical school, the Dean gives the following speech: "Doctors are powerful. Do no harm, because you can do harm. A patient will come to you at his moment of greatest dread, hand you a knife, and say ‘Doctor, cut me open.' Why? Because he trusts you." (Patch Adams, 1998) This quote reflects the medical dominance enjoyed by many physicians. When the movie was filmed in the last 1990s, governmental control of health care was much less than it is today. Despite the change in the authorities of health care, many patients still trust doctors all the same. Doctors tend to thrive on that confidence; as seen in both films, the attending physicians act like they are superior to everyone else. Mainly the power gets to their heads. While this is not the case for every medical practitioner, many physicians possess the qualities and personalities that would make this an accurate generalization.
 
Another important aspect of working in a health care environment is the importance of emotional detachment. At the start of their medical education, most are aspiring physicians because they want to make a difference in someone's life. However, by the end of residency, many doctors have lost touch with their interpersonal communication skills. This is because "medical culture values and rewards ‘strength' and equates emotional involvement with weakness." (Weitz, 2013) The emotional detachment shown in both Patch Adams and Awakenings was overly dramatic. In Patch Adams, it would never be permitted for a physician to interact with patients in such a laid back manner. He also spent a lot of time creating elaborate plans to entertain the patients. Adams always asked the patient's name and how they were doing; a violation of the unwritten medical codes and values. Likewise, Dr. Sayer became so emotionally attached to the patients he was trying to treat, that he essentially could not function as an ordinary person. He was consumed with an attempt to cure these patients to return them to a normal life. When a patient experienced something good, it was a win for him, and when they suffered defeat, it was a loss for him. Dr. Sayer became one with his patients, and it ultimately caused him to lose his objectivity.

Ethnicity, race, gender, age, and class all influence the medical field. For physicians, in particular, male non-Hispanic whites from middle and upper classes are most likely to graduate with their medical degree. (Weitz, 2013) Any deviation from this "ideal student" would make obtaining a degree much more challenging. In Patch's medical school class, there were eight girls out of 160. Therefore, those women had to perform to a much higher level to be considered just as good as one of the men. Being a non-traditional, 30-some-year-old student, Patch also faced significant adversity on his road to obtaining a medical degree. In medicine, if you do not fit a particular group of criteria, you are considered much less likely to succeed. Although this is quite unfair, it is the harsh reality.

As time wears on, the doctor-patient relationship is rapidly changing. Rather than the physician making all of the decisions (except in situations in which the patient may be incapacitated), doctors and patients are now working as a team to develop the best treatment plans. "Today's patient role is more often chronic versus acute; is based on the risk of disease rather than existing illness; and requires more active engagement by the patient in monitoring, self-educating, and self-treating over time rather than just seeking treatment from a provider on a one-time basis." (Weitz, 2013) As illnesses shift from primarily acute illnesses to more chronic problems, this is becoming more and more evident. Because his patients are incapacitated by encephalitis lethargica, Dr. Sayer is forced to make the decisions regarding treatment, whereas a person with chronic lung disease may help to develop a treatment plan with their physician.    

The media likes to dramatize medical situations for entertainment purposes, but in the process, many medical aspects are misrepresented. When the media is attempting to make a point to support their argument or agenda, the reality may also be misconstrued. On the other hand, Hollywood has given us some excellent and accurate portrayals of the health care setting. While overdramatizing and misrepresenting the medical environment is not ideal, it is not unusual to see.   

Citations:
Marshall, P. (Director), Parkes, W. F., & Lasker, L. (Producers), & Zaillian, S. (Screenwriter).  (1990). Awakenings [Motion picture on DVD]. United States of America: Columbia  Pictures. 
Shadyac, T. P. (Director), Mylander, M. (Writer), & Oedekerk, S. (Screenwriter). (1998). Patch  Adams [Motion picture on DVD]. United States of America: Universal Pictures.
Weitz, Rose. The Sociology of Health, Illness and Health Care. 6th ed. Boston: Cengage Learning,  2013. N. pag. Print.