Beneath the Surface, by Carlie

The purpose of my club, “Beneath the Surface,” is to help those who face challenges that cannot be seen by the naked eye, to educate people about these hidden challenges, and to teach the power of empathy. I started this club because of my own experiences with pain disorders as well as mental disorders that are not visible to others. My mission is to raise awareness and promote compassion across hidden differences. 

I wrote this last year. It explains some of the struggles I faced and why I want to raise awareness for anxiety, depression, and other invisible illnesses. 

Sometimes the biggest smile contains the most pain. November 19, 2015 was the day I had my surgery. Before surgery I have never experienced a day in pain, but ever since then I have never completely healed physically and emotionally. I have lived every single day of my life in pain. Once in a while I’ll have a good day with my pain being at a 5/10 but more often my days last with my pain being at a 10/10. My pain varies from sudden severe stabs to long aching cramps, in my temples, my jaw, my base of my skull, my neck, and down to my shoulder blades. 

My surgeon, “Dr. L,” said to me, “This has never happened to me in the 30 years I been doing oral surgery, I don’t know what to tell you, but I’m never doing the arch bar technique again .” As a 16 year old, hearing that internally destroyed me. I think to myself everyday why me? Why was I the one my surgeon used as the Guinea pig by using arch bars for the first time? 

Pre operation, I had so much hope leading up to my surgery. Believing that it was going to turn out great and I would finally have a smile without a huge over/open bite (a bite I would finally be able to chew food with) and now all of that hope has been crushed within the past year. I have been to doctors in numerous states for my relapsed jaw and have gotten replies like, “I have to cut your jaw into 3 pieces to help you, but I can’t guarantee it won’t relapse again” , “you need a prosthetic joint replacement”, “you have cheerleader,s disease” (condylar resorption), “you have TMJ and need to get your condyles reconstructed”, “you should have had braces and been wired shut after surgery, that’s a surgeons error”. As well as professionals that have said, “this is a complicated case, I don’t know what I can do for you.” How is that ok? All doctors have been scared to touch me or try to help me because I’m the rare  patient that can relapse easily.

IT’S BEEN OVER A YEAR AND WE HAVE GOTTEN NOWHERE. I have been in chronic pain. It has taken away from my entire life. I never sleep. I toss and turn all night because my jaw and neck are in excruciating pain. And when I do finally get sleep, I’ll wake up in the middle of the night because I have nightmares of being in mid surgery. My anxiety level has became unbearable ever since my surgery. I have flashbacks to surgery because of my pain constantly reminding me that’s there is something wrong with me, and will have anxiety attacks because I don’t know what’s to come next. I can’t even do things like look down for more than 10 minutes, sit in a chair comfortably, chew, brush my teeth, put on makeup around my cheek area, or yawn without being in pain. I live on pain killers which I quickly gained a tolerance to. 

Oral surgery is not an easy recovery. Surgeons have carelessly told me, “I’ll just have to redo the oral surgery,” with no positivity it will work better than it did the first time. I am traumatized. Waking up from surgery looking/ feeling like I got hit by a bus, having 102 fever every other day, getting an allergic reaction to the morphine and having hives all over my body, throwing up blood, and not being able to walk on my own for two weeks because of the dizzy spells. People get upset when they don’t eat for two hours, imagine being on a liquid diet for over two months. In addition to the recovery process, it was so emotionally challenging for me to have my face reconstructed, going out in public and get weird looks like I have something wrong with my face. 

I have been positive for so long through the recovery process. However, it’s at the point I have been to all the best surgeons in the country and have gotten nothing but negative responses about my case. I spent three months, three times a week going to physical therapy and got no progress. Now, I go four times a week to the chiropractor and two times a week to an acupuncturist. They give me a small amount of temporary relief. So, I plan my schedule around my pain management doctor appointments. I can’t even last a full day in school! I can’t even ride my horse more than once a week! How could Dr. L look at me and say, “you’ll be ok,” after knowing everything I been through and everything he’s done wrong?

My most recent diagnoses is trigeminal neuralgia. It is a chronic pain disorder affecting the trigeminal nerve in the face. This is because of my bio-mechanical malfunction in my jaw. It was caused by my oral surgery/face trauma. Doctors today call this the “suicidal nerve.” This is known to be one of the worst medical conditions. If it wasn’t for my amazing family and chiropractor I wouldn’t have the smile on my face I use to hide my pain. My chiropractor is the first doctor who has been there for me and continues to constantly check on me and offering to help.

However, there are so many people in this world who have no integrity. Small comments hurt. By this point I’m just frustrated. People make fun of me for having to carry a rolling backpack in school (because my of my neck), by kicking it and saying, “nice suitcase” while laughing sarcastically. That’s bullying. You have no moral qualities if you watch me sit in class with an ice pack on my neck and having all my work on a book reader (because I can’t look down for more than 10 minutes without getting jabbing neck pain) and tell me, “I’m just doing it for attention.”  I have endured so many hurtful comments about my jaw and what I’m going through. I have had people say, “you’re being dramatic, it’s just a little jaw/neck ache, it can’t be that bad.” Other people have said, “I wish I had a medical condition so I can get into any college I want.” Growing up around people with no heart make me really appreciate how my mom has raised me. I know from experience that the people who are in the most pain tend to be the ones who are always trying to make others smile. And for the evil people out there who know who they are, it is not that hard to think before you say! Just because I have a smile on my face when you see me does not mean I am physically and emotionally OK. No one will ever understand my pain unless they experience it. I am thankful for the few true friends in my life who have been there as my shoulder to cry on. 

God gives the toughest battles to his strongest soldiers. Sometimes it’s hard for me to understand what God really wants to happen to me. And I will not always believe in the quote, “everything happens for a reason,” because what is the reason for the pain people suffer from around the world? However, I trust that God will put me where I am meant to be someday. And I know that through this dreadful experience I am growing. Everyday I act like nothing is wrong, and it’s simply called being strong.

The author with MYM speaker Drew Bergman at the Ranney School in New Jersey