Eleanore Vs. Being a Medical Anomaly

Dearest delicious things,

I only address you as such because I am munching on caramel popcorn and I currently lack creativity. But don’t fret reader, I promise I have no intention to munch on you. Disclaimer: this does not apply in a zombie apocalypse. 

I think it’s fascinating that whenever I am wrestling with writer’s block my life instantly gives me something to write about. This was my experience today when I found myself once again in a dental urgent care still unsure about what has been causing my severe jaw pain the past few weeks. 

As I found out, my teeth are freaking the fuck out because my facial malocclusion crowds and misaligns them (and that’s only part of it). The kind dentist assured me that while it is nothing to panic about I would have to see an oral surgeon to talk about having some teeth removed, as well as to see about what other treatment they might find helpful for my maloclussion.

This would be fairly straightforward if not for the fact that since I am on Medicaid there are not many oral surgeons who wish to see me. My dentist’s advice was to call them and  tell them my unique situation in detail because as she put it, I’m exactly the sort of thing a dental school would love to get their hands on. Literally. She also told me I’m one of the most complex  cases she had ever seen. She isn’t the first to tell me this, and she probably won’t be the last, but I’m never sure exactly how to feel about it.

The challenges of chronic illness never stop; they don’t even go on nice summer vacations. Being a chronically ill anomaly provides even more challenge and complications. Since childhood my malocclusion has been regarded as one of the strangest most doctors have ever seen. I’ve had doctors go so far as to ask to write about me for possible journal submission, but at the time I wasn’t sure how I felt about being in a journal so I politely declined (little did I know I’d grow up to become a spoonie blogger). 

There are two main difficult parts of being a medical puzzle, the main one of course being that treatments are always difficult. Between my allergies and all my other illnesses, finding one treatment for a particular illness that doesn’t lead to the aggravation of another illness is a battle. Too many times I’ve had doctors stare at me in awe, unsure what to do with me, because the standard treatments are incompatible with my condition. Especially when it comes to medications finding one I don’t have adverse affects from is like playing minesweeper…and just like the game, it usually doesn’t last long before I explode.

On the one hand, since I have grown to have an affinity for medical things, the fact that I am a strange medical thing is neat in a twisted kind of way. Still I cannot help but sometimes wish that I was the spectator rather than the patient, because no matter how interesting my situation may be, at the end of the day I am physically and emotionally exhausted just from being myself.

Socially it is also frustrating. Though I have met a few people who have different parts of my illnesses, I’ve never met a person who has the majority in common with me. Recently I’ve found myself shying away from trying to connect with others who are chronically ill because in my experience, our conversations ultimately turn into contests as to who deserves more pity or who has had it worse. That is never my intention in a conversation; instead I much prefer to have the support of each other to help us through. The competition is mentally exhausting for me, and so I instantly retreat to the introverted side of my personality. 

On days like these when I’ve been in a medical setting pretty much all day, I return home feeling weak and troubled, my mind wandering about. I imagine what it would be like to be an easily treatable patient or to not be a patient at all. I envy people who can go to the dentist and not worry about Vasovagal Syncope or allergies to drugs. I wonder what it must be like for someone to be of average health, and to always get better when they’re sick or only end up in Emergency Rooms for accidents, rather than having it be a standard part of their lives. 

Then again, there is always a silver lining with me, and the one that comes with my illnesses is, well, me. Being chronically ill has inspired me to write, to set off on a mission to help people using my experiences that I would not have behind me if I were an average girl. It’s possible that I may not have been a writer at all if I were different. I always say that I am a writer with a life full of stories to tell, but what would I have to tell if I were a simpler human being?

I will never have the answers to any of these questions because I am never going to be like anyone else in any fashion. I will most likely be a medical anomaly for the rest of my life and I have to learn to be okay with that. Should I resist it as I had before, it will only lead me to more frustration and sickness, and I’ve had quite enough of both. While I never know exactly how to react when I’m told how strange or complex my medical situation is, I suppose the only way to truly react is by being myself…which naturally means that the answer would include a bad pun and loads of sarcasm. 

So, what does it feel like to be a medical mystery? It feels uncertain and frightening most of the time. It also feels a little special being able to make the jaws of nurses and doctors drop by merely telling them my medical history. But overall, at the end of the day, it mostly feels exhausting and trying, and like I need a plethora of hugs. I may not know of many treatments that work, but that one is foolproof for certain.

In other Stardust news, my adoptive mother bought me a giant panda for Valentine’s day because I am definitely an adult and not an easily excited child on the inside. 

To read more about my life with my facial maloclussion, click here,  then click here (it’s a two parter)!

A cloud hangs over,
And mutes my happiness,
A thousand ships couldn’t sail me back from distress,
Wish you were here,
I’m a wounded satellite,
I need you now put me back together make me right.

~Incubus – Anna Molly

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s