Eleanore Vs. Abby Normal

Dearest blossoming humans,

I am well aware that it is against protocol to write part one of a post and then go on to write something unrelated before writing the other half. What can I say; I’m a rebel. Ironically, this post is about the concept of normal and what it means to a chronically ill person, so if there ever were a time for me to not follow an unwritten rule, it’s now.

Yesterday afternoon I was driving from work to a doctor’s appointment. I was in an exhausted haze and in a great deal of pain, but still my mind was overthinking as the thunder grumbled in the distance and the rain flung itself against my car. As I joined my fellow drivers on the freeway, I looked about, wondering where everyone else was headed.  This brought me to the thought, “What the actual fuck does it mean to be normal?”

I’ve never been what would be considered “normal,” which means I’ve heard the word a great deal in my life, especially in the way of judgment. “Why can’t you just be normal?” I’d be asked, by all sorts of people. On my worst days, I would pray before bed that I would do anything in the world if I could just wake up and be normal. I wanted to look normal, act normally, speak normally, and most importantly of all,  have normal, standard health and be rid of my chronic pain and health issues.

Nowadays, each day is a battle not only with my health, but to fight against my impulse to  wish myself into oblivion as I have for so long.  On days where it seems I can’t even do the simplest things right, or the days every single joint and muscle in my body are inflamed, I still have that thought. However, here is my confession: I have no idea what “normal” means. So what exactly have I been wishing for?

Okay, let me rephrase that. I know what normal means, mostly, though more often than not when people are critical of my abnormalities, they’re comparing me to someone else as an example of how I should be. I wanted to know the exact, non-bias definition of the word, so I posed this question to the Google. The Google was happy to answer me, and within a click of my finger and a blink of an eye, it brought me my answer:

Normal: Adj. Conforming to a standard. Usual, typical, or expected.

Well, that definition certainly explains it well…sort of. It doesn’t help as much as I hoped. It says conforming to a standard, but whose standard? Usual and typical of what exactly? The more I dissect this, the less helpful it is. Sometimes our language can be vague and confusing, and for an overthinking human such as myself, it is incredibly aggravating. For the sake of my post, let’s just assume the standard is the standard of American society (since I live in America) and what is expected of an average 26 year old. Spoiler alert: I am not an average 26 year old. 

As I grow older I  begin to gain more understanding about what it truly means to be myself and live my life, illnesses, abnormalities and all. I have tried to deviate from self loathing and wishing myself away, instead moving towards acceptance. Sometimes it works. Even still, there are some days it really doesn’t work, and I am left feeling defeated for the millionth time. When you’re chronically ill, defeat is something you’re force to get used to.

There is also the issue of those outside of my brain (as in, you know, literally everyone) who take my acceptance of my abnormalities and difference as self hate, self pity or simply giving up. On the contrary, I’ve begun to learn that accepting that I will never be normal is one of the most freeing gifts I could ever possibly give myself. It is only with acceptance of what I cannot do, and what I am not, that I can discover what I am capable of. It is only after I realize that the “standard” road is not for me that I can learn to pave my own that will still lead to happiness, despite it being more difficult to walk along. Not to mention that my concept of happiness will also be different than many others. Some days, I am not even walking, but crawling down my road; yet it’s better to crawl along the right road than to be stagnant on the wrong one.

It isn’t typical to be in as much physical pain as I am every day, to need so much medical help at such a young age, or to have as much trauma, anxiety or depression as I do. But this is my life, the only one I have been given, and as I have said before and will continue to say a thousand times more, I still believe it can be beautiful and thriving; I just may not get to that point as easily or in the same way as many others. What will help me is not to force myself to be normal, but to embrace the fact that I’ll never be, and to make goodness of that instead.

For all my friends who are unwell, atypical in any and all ways, or who didn’t get a say in their unique and difficult circumstance, know that though we may have to work a thousand times harder for every single part of our lives, and even though many days we might lose our never ending battle, we can still get to where we want to go. We have to be stronger and more patient than most. We may not be normal, but we are so much more than that – we are resilient warriors of suffering, and that is never to be dismissed by ourselves or others.

Sing it out, boy, they’re gonna sell what tomorrow means.
Sing it out,  girl, before they kill what tomorrow brings.
You’ve got to make a choice,
If the music drowns you out;
And raise your voice,
Every single time they try and shut your mouth.

~ Sing – My Chemical Romance

Eleanore Vs. The Hospital Myth

Dear readers who are positively rad (that’s all of you),

The day before yesterday I wrote this post (click the blue stuff to read after), and part of it explained how I am currently in intense pain that is more painful than usual. I was fighting back as best I could to keep from ending up in the hospital. Sadly all my efforts failed, and by 9pm that night I was once again in the Emergency Room, a place I’m way too familiar with. Really, I mean I should get an achievement by now or something.

I won’t write too much about my experience since it was mostly the same sort of thing I’ve gone through a thousand times before. However I am grateful that I can say that I am okay, and while I’m still in terrible pain I’m also fairly high on muscle relaxants. So I’m going to be alright in the end, though this post may be shorter than usual because as it turns out, articulate writing and drugs don’t work well together.

This particular trip to the hospital got my mind to contemplate all the aspects of being chronically ill, mainly the ones which are out of my control. Thursday night I was in the waiting room for six and a half hours. Usually you wait two to three, so this was longer than I had waited in a long time. There wasn’t a massive crowd in the waiting room, but they weren’t letting many people in. Many patients in the waiting room became livid, yelled at the desk attendants and stormed out, while others quietly left and told the people they were with that they’d simply go to a doctor the next day. For me personally, though spending nearly seven hours in a waiting room is not my ideal way to spend a Thursday night, the ER is currently the only way for me to see a doctor, and since I was at least half sure that I’d die from the pain I was enduring I stayed put.

Around 1 a.m a lovely woman who had come in halfway through my night came up to me and said through her paper mask that the hospital had received 11 traumas that night, which was why they weren’t letting anyone else in, but that nearly all of those people were about to be discharged, so things were going to pick up shortly. I was so thankful that she had shared this information with me as I was exhausted, aching, and altogether over my existence. Two hours later, I was finally in a hospital bed.

This whole situation had me frustrated, sure, but not entirely with the hospital. In fact, I told my nurse after he had apologized over and over for the wait that I wasn’t angry with him, but at the people who were treating him so rudely. “I understand that there are other people in more dire emergencies than I am,” I told him. This lead me to what I have decided to call The Hospital Myth. It goes as follows:

Some people believe that going to the hospital will seamlessly fix all their issues. They also believe that being in the hospital means that a person is completely safe and incapable of getting more sick or hurt.

A few years ago I got into a fight with a friend. At one point, she told me something along the lines of it was easier for me to be in the hospital than it was for her to go through her current situation because I was safe there. I have been insulted by countless people and have had a large collection of disdainful words flung at me by friends and family for all types of reasons. I’ve forgiven and forgotten most of it, but this is certainly one of the more difficult ones to let go. It was by far one of the most insulting things I had ever been told, and I have been called every awful name in the book, so that’s saying something. On the bright side though, it did bring about this situation I call The Hospital Myth. 

While of course we would like to think that we are entirely safe in the hospital and that they take all our pain away with their magic medical fairy dust, it just simply isn’t true. Doctors and nurses save lives every single day and we’d be absolutely fucked without them, and though they put all their passion and strength into helping us, sometimes everything they’ve got is still not enough.

I have nearly died in the hospital. I have passed out, I have screamed and writhed in agony as people scrambled to help me but couldn’t scramble fast enough. The reality is there is nothing easy about being in the hospital, whether it is for twelve hours or twelve days. While of course there is relief in being in the best possible place for when disaster comes surging through your body, there isn’t relief in catheters making your body parts sore, uncomfortable beds, and the general inability to go about a normal life. There’s also the whole, you know, being sick and in pain thing; a complete killjoy.  For the thousandth time, I repeat: there is nothing easy about being in the hospital. The fact that people think that being hospitalized isn’t traumatic, stressful and intense is insulting to both the patients and the nurses.

I truly believe that chronically ill people, doctors and nurses have some of the most challenging jobs on the planet. There’s nothing soothing or easy about it. In any of those jobs, even when things go right, the happiness is muted by more “what ifs,” exhaustion, and plans for recovery. The fact that many people, and even some of those who are or who once were close to me, think that being chronically ill and constantly rushed to doctors is anything but arduous honestly breaks my heart.

Likewise, the patients who get angry when they have to wait or don’t immediately get results also frustrate me. Believe me, I have had horrible experiences with doctors and nurses. I have been misdiagnosed, given wrong medications, and have had my condition worsen by things that have gone wrong in the hospital. I have several time left feeling worse instead of feeling better. I know more than most that there are bad experiences to be had. But all of this comes with being chronically ill. People such as myself have to accept that we will sometimes have to wait in the waiting room for 7 hours because the hospital is overloaded with 11 critical patients and several gunshot victims, that sometimes the doctors won’t know what to do with us right away and will leave you in the ER for two days straight to figure it out, or that even when they do, they won’t have much to tell us about the diagnosis, and will have to send us somewhere else to get help they just cannot give.

Regardless of what side of the medical situation you are on, it is not effortless. It takes a lot of strength to get up every day when my body is drowning in pain, and it is even worse weeks like these when my daily pain is aggravated by new pain, like the nerve inflammation and muscle spasming I am experiencing right now. It’s not unchallenging to keep yourself from falling to pieces when stuck in an Emergency Room waiting for a result that could either be nothing, or devastating.

I have been called a baby, weak, hypochondriac, and many other lovely labels for the fact that I cry easily, I am very expressive about my pain, and that I am in Emergency Rooms more than I’d like to be. On the contrary, I am learning as I get older that fighting against all of my diagnoses on a daily basis and being transparent about it takes an enormous amount of strength that most days I don’t feel I have. I usually feel fragile, frustrated, and altogether dysfunctional, yet I keep struggling through my life; and there are millions of others just like me. Occupying my body is most likely one of the hardest jobs I will ever have. I don’t know how I am doing, but I’d like to think I’m doing alright so far, and I’m hoping to stick with it until I’m 80 or so.

Long story short, people like me are fucking badasses. Hopefully this doesn’t come off as self-indulgent. Considering I generally have confidence the size of a jelly bean and this week has been far too painful, I’d like to think I’m allowed on this occasion to say that I’m good enough to be considered for a Marvel hero.

Okay…maybe that’s a bit much. But you get the point. At least my hospital gown matched my eyes this time!

SooooooOOOOOOOOOOO SAD.

~ I am so Sad, so Very, Very Sad – Crash and the Boys (Scott Piglrim Soundtrack) 

Eleanore Vs. (Un)certain Doom

Dear Rebel scum,

I am panicked. Okay yes, I’m always a little panicked. It comes with the job of being chronically ill. However today I am more panicked than usual.

For the average healthy human, it’s fairly easy to tell when something is wrong with your body. Doctors usually say, for example, that if you are having chest pains, neck pains, shoulder pains, and are fatigued, there may be something wrong with your heart, so you should probably head to the Emergency Room. But what exactly do you do when you have all of those symptoms on a daily basis, and one day they’re slightly worse than normal? Do you run to the Emergency Room to get checked out, or do you blow it off as a bad pain day? How can you tell the difference?

Spoiler alert: you can’t.

Many less than lovely people in my life have said that I’m dramatic, eccentric, worrisome, and other shady synonyms for “hypochondriac psychopath.” Those people fail to understand that the reason I am so worried is because I have lived through countless medical emergencies. I have endured more pain than most people my age, and I have had far too many close calls. I also have over a dozen diagnoses, and the thought of getting more troubles me. So you can’t totally blame me for my worry; well,you could, but you’d be kind of a butt.

The cause of my anxiety the last few weeks has been my nerves. I have what’s called a Facial Maloclussion, which is a genetic defect that causes the jaw to be malformed  (you can read about my life with the condition here and here after!). It comes with a great deal of symptoms that I have experienced sinced I popped into existence. Side effects of a facial maloclussion include:

  • Constant jaw, neck, shoulder, and upper back pain
  • Regular migraines
  • My face lacking facial structure and being more elongated than it should be
  • A severe underbite
  • Crooked Teeth
  • Trouble breathing and eating
  • Trouble existing

As if that weren’t enough,  every month I also get a Charley Horse… in my face. The right side of my face, the side that is more malformed, has terrible muscle spasming and tightens up. Sometimes tiny flashes of lightning also sear through my face (Pikachu has a vendetta against me apparently). The episodes normally last a week, and in the meantime, there’s not much I can do about it. The best advice I’ve been given in regards to getting through these episodes which are called TMJ (Temporomandibular Joint) spasms, is to eat soft food, put a wet, warm towel on my face, and try not to hate the world. The first two I’ve gotten good at. The second, not so much.

While I never become used to being in chronic pain, it does become my version of normal. I’ve gotten somewhat familiar with my daily pain and I know what I need to be able to function. At a certain point that is the best thing someone like me can do because while understanding the pain doesn’t heal us, in my experience, it at least makes me less nervous when I comprehend what my body is doing. I attempt to coexist with my pain because being stressed out and anxious only worsens it. In regards to my maloclussion this was all going well…until a few weeks ago. Cue the dramatic plot twist music!

Nearly a month ago I started having my usual TMJ spasms. I did all my usual treatments but it didn’t go away. I  waited the standard amount of time, and thought it was odd that it was getting worse. As time went on, the pain started to travel down my neck. Today I woke up with the pain added to my right shoulder and my right arm. My face, neck, shoulders and arm all feel tightened and clenched, and that feeling is joined by sharp, shooting Pikachu pains. It isn’t the best sensation and Ibuprofen, ice, and heat don’t help. Considering I don’t have insurance, I can’t run to a doctor like I desperately want to do, so I’m left sitting here in a mental frenzy while I allow my mind to run wild with all the possible ways I may be doomed.

There’s about a 99.9 percent chance that I’m mostly fine. After minimal research I found that it’s actually incredibly common for people with maloclussions to have nerve issues as a result of the defect. While there’s still the possibility that I have some serious nerve damage, the possibility of it being from an illness I have already rather than a new one I know nothing about is oddly comforting. But of course, this morning when I Googled all the symptoms together, which I absolutely should not have done, most of the results were frightening heart issues, which always tend to scare me since my father had several of them. Internet, how could you betray me? I thought you were cool.

Last time I was in the Emergency Room for one of my infamous Vasovagal episodes, I asked the doctor how I or anyone around me could tell the difference between me passing out from being overstressed or hypotensive, and me passing out from something potentially life threatening. His reply was exactly what I had feared. “There really isn’t a way to tell, that’s why you have to come to the hospital if it happens,” I was told. He seemed genuinely concerned for my wellbeing. However, his answer sums up the main problem I have with trying to balance all of my chronic illnesses. I can never tell when I could be in serious danger.

This is why I am scared all the time. I’d be far more comfortable with my situation if there were clear signs as to when something is dangerously wrong. Again, for the average human, having your heart race like it’s revving up to drive straight out of you isn’t normal. Having shocks, tension, throbbing, and stabbing pains every second isn’t normal. Passing out isn’t normal. For me, it is, and I am overwhelmed by trying to understand it all.

I have tried tirelessly to differentiate the attributes of my illnesses, but it gets extremely tricky. Of course, this would all be somewhat alleviated by going to see a doctor, but I don’t have health insurance or much money, so my only option is the Emergency Room which is expensive and overpacked with dozens of people just like me; people who are in need a general doctor but who can’t afford it. I did thankfully get help from a low income program here, so I will be able to see a general practitioner…in two months. While I’m grateful, the thought of living with these pains for two months is driving me slightly insane.

Yesterday I was talking to my friend Bre, who I have known for exactly ten years. She herself is disabled and is one of the most brave people I know for all that she’s had to face with her health conditions. Her life is just as complex as mine, and while I wish more than anything for her to have a good life, it is nice that she is one of the few people that understands what I’m going through, doesn’t try to out-sick me, and is just altogether a fabulous person.  At one point in our conversation, I told her that most days the idea that keeps me going is the fact that one day when I am far better off than I ever have been in my life, I will look back on my life and think, “wow.Things used to be so different and terrible for me, and look at me now.” To my surprise, she knew exactly what I meant, and said she thought this herself.

I then proceeded to explain that aside from the fact that being chronically ill is stressful as hell and makes me worry literally all the time, the less obvious reason I constantly fear something terrible is wrong with me is because what I want more than anything else is to make it to that day. That day when I have the medical care I need and am in the best shape of my life despite my chronic illness, when I own a little home in a place that I love, with a job that I adore just as much. I look forward to having a healthy and happy life, living with my healthy and awesome soulmate and maybe even some totally rad children . I fantasize about the day I I am significantly less fearful, sitting at my little coffee table drinking a cup a tea with those I love most saying, “look what I survived. look how bad everything used to be, and look how happy I am now. It was worth it.”

Every day of my life I spend trying to get a step closer to that day. I have to believe that regardless of what I have to fight through, I will get there. I try to think of this in positive terms, but when my pain is increased and I can’t get answers as to why, or I have new symptoms that hurt even worse that I can’t get help for, my first thought is my deepest fear; what if this prevents me from reaching that day?

This post wasn’t nearly as articulate as I had hoped, and I suppose it’s more of a rant than anything. But sometimes an emotion explosion is needed. I just keep thinking that if I don’t make it to that day in my future, what was all of this for? I’ve never been able to think of a better reason to fight on, which leads me to believe that all my suffering, tears and resilience are so that I can endure long enough to have a wondrous life that is precisely what I dream of.

As long as I get to that day, and have many similar ones after it, this suffering is worth it. And I truly believe with all my heart that even with being disabled, chronically ill, and painfully unperfected, I can still have that sort of future.

Disclaimer: I’m not a hologram or AI, I am a real live girl… I think. 

We were barely 18 when we crossed collective hearts.
It was cold, but it got warm when you barely crossed my eye.
And then you turned, put out your hand,
And you asked me to dance.
I knew nothing of romance, but it was love at second sight.

I swear when I grow up, I won’t just buy you a rose.
I will buy the flower shop, and you will never be lonely.
Even if the sun stopped waking up over the fields
I will not leave, I will not leave ’till it’s our time.
So just take my hand, you know that I will never leave your side.

~The Gambler – Fun

 

 

Eleanore Vs. Stranger Things

**This contains NO spoilers about the show, so don’t worry! Totally safe to read!**

Dear people in the right-side in and the upside down,

I have been enchanted by the Netflix show Stranger Things. I mean, how could I not be? It has clever children, weird sci-fi stuff, and takes place in the 1980’s. It was practically made for me.

There are many main characters in the show, but by far my favorite is the little dude you see above. In the show his name is Dustin; in real life, his name is Gaten Matarazzo. He is a wonderful actor, and his character is amazing for an infinite amount of reasons. However, the most unique thing about my new favorite tiny human is the fact that not just Dustin, but Gaten himself has Cleidocranial Dysplasia.The condition has a plethora of symptoms and information regarding it, so I won’t write a summary for fear I wouldn’t do it justice. But you can read about it here. 

For Gaten, one of the symptoms of his condition is that he is missing his front teeth, because those who have Cleidocranial Dysplasia often will have the growth of their permanent teeth delayed. This has resulted in his charming, unique smile and his speech impediment; two things we rarely see on television.

One of my many illnesses is called a facial maloclussion (which incidentally can often be a symptom of Cleidocranial Dysplasia as well). My maloclussion is the result of a genetic defect which caused my face and jaw to be deformed. As I have grown, my face has become more deformed and elongated, my teeth have grown in crooked, and I have a severe underbite which causes me to have a speech impediment.

Several times in the show, Dustin is teased for his lack of teeth and his speech impediment, and every time he is bullied, my mind cannot help but to flash back to my childhood days, when I was teased relentlessly by strangers, friends, my siblings, and even grown adults, including dentists, for the way I look and speak. Children would ask me, “what’s wrong with your face?” or “why do you talk weird?” and until I was 20, I didn’t even have an answer. It wasn’t until my early adult years that I found out that I wasn’t just a freak, but had a genetic defect, that there were others in the world like me, and that there was a name for it besides “deformity.”

When I was 21, I went to see to a dentist who I was referred to by another doctor of mine. The dentist called over everyone working in his office, and they all crowded around me as if I was a creature on display. “Are you self conscious about how you look?” he bluntly asked me. Before I could answer, he smiled and said, “well of course you are, I mean, look at you,” then continued on to tell me that he didn’t have the time to “deal with me,” as my case was too severe. I returned to my car, called my best friend, and cried.

Flashback even further to when I was 7. I was forced into a theater program at my elementary school. I absolutely hated it; I would have much rather been at home with my grandmother, watching her cook as I did my homework. As time went on, though, I began to find a passion in performing. I became so passionate, in fact, that I decided early on I wanted to be an actress, and was on stage as much as I had the opportunity. When I was 18, I had a collection of terrible social experiences within the theater community at my college that made me question whether acting was really my calling. Around the same time, my health began to rapidly decline, and I was becoming more weak, less able to do what I normally could, and my pain was increasing all over my body.

I was still trying to fight my way through it all, but I ended up having to stop going to college altogether because I became too sick. Since my mother still wanted to have me do something with my life, I found an adult acting class to go to, just for the sake of not feeling entirely useless. One night after performing a monologue for the class, the teacher took a blow to me that finally destroyed the last little bit of passion I retained. She told me, “You’re really funny; but you’ll never get hired, because you can’t speak clearly, and no one can understand what you’re saying.” And just like the play Macbeth, everything inside me died. (If that was a spoiler for you, you should probably just read more). This was not the first time I was told something like this, but it was the harshest, and the last.

Now back to the present with Gaten/Dustin. After all I have been through with my speech impediment and facial maloclussion, especially in the world of theater and acting, seeing this little boy on my television with his lack of teeth and speech impediment has made my heart soar. Within the first half of the show, my immediate thought was, “I wonder if he really has Clediocranial Dysplasia?” Thanks to the Magic Google Machine, I found out that he really does, and I was nearly brought to tears.

I truly hope Gaten is aware of how he is impacting society just by being himself. I found an article that talked about how he’s inspiring other kids who are like him, but the reality is that he is not just inspiring children. I am supposedly an adulty adult and he inspires me, too. Seeing him in what has instantly become a popular show makes me feel not only proud but also represented, and while this subject is for another post entirely, I cannot stress enough how incredibly important and valuable representation of all people in the media is. IT IS SO FUCKING IMPORTANT, YOU GUYS. 

Gaten has taken his medical condition, which can be seen as a massive hinderance to his life, and has made it into a tremendous asset. While his character on the show is bullied now and then for his impediment, the most beautiful thing about the show is that his missing teeth and speech impediment are not his character’s defining feature. The character isn’t just the kid who talks funny. Dustin is compassionate, hilarious, brilliant and brave. He is so much more than his medical condition, and that is exactly the kind of message that people like us need to receive from the media; we are still whole people. Even people like me who are riddled  with a collection of illnesses that make most days a treacherous war are still more than just sick. I wish I could scream this from the goddamn mountaintops, but I live in Missouri where mountains aren’t really a thing, and since I have a facial maloclussion the right side of my jaw would most likely dislocate…again. For now, I suppose bold font will do the trick.

I am so thankful to the writers and creators of the show for composing Gaten’s character the way they have; they gave him full personality and life, just as they did with all the other characters, and have not allowed any part of him to be left empty simply because he is obviously different than the rest.

There are a million reasons to watch this show. It’s thoughtful and intiguing and creative, and Gaten is really just the cherry atop the freakishly delicious caked that is Stranger Things. It also helps that at one point they use my name for *bleep*, to which I responded by totally freaking the fuck and then screaming, “They used my name! Eleanores rule! Yes!” While my boyfriend looked at me as if I was a little bit insane.

Well, maybe I am. But as Dustin says, you can’t keep this curiosity door shut!

This indecision’s buggin’ me (Indecisión me molesta)
If you don’t want me, set me free (Si no me quieres, librame)
Exactly whom I’m supposed to be (Dime! ¿Qué tengo ser?)
Don’t you know which clothes even fit me? (¿Sabes que ropa me quedar?)
Come on and let me know (Pero tienes que decir)
Should I cool it or should I blow? (¿Me debo ir o quedarme?)

~The Clash – Should I Stay or Should I Go 

Eleanore Vs. Evil!

Dear heroes of every kind,

I sit at my computer facing windows that crawl up the walls of my bedroom. It’s only August and while it is 90 degrees or so, the St. Louis sky seems to be stuck in a perpetual winter. The dark grey clouds that often explode into thunder and lightning loom above, and though the sunshine tries to peak out from behind them it rarely succeeds. Weather like this makes me feel lethargic, possibly because I am a spoiled rotten Californian who is not used to all the gloom. Lethargy is never a good feeling; it feels like it weighs me down and not only causes me to be apathetic but also makes it easier to forget the beauty in the world because everything is covered in various shades of grey.

Then I am reminded that recently I made a new friend here on WordPress. His name is Luke Atkins, and though I do not know him well, I can say from my few interactions with him that he is truly lovely. He is much like myself in that his mind is constantly spiraling with billions of thoughts at once, and when he lets them escape onto a WordPress page it results in wonderful writing. A few weeks ago, he published this post, a collection of positive things, good vibes and reminders that unlike the Missouri sky, the world as a whole is not drowning in gloom and sadness. I told him how I felt about it, to which he replied I should write a post regarding the subject. In an instant I was inspired.

Though one of my favorite descriptions of myself is “pesimistic little asshole,” I generally don’t consider myself to be a pessimist or an optimist. I feel both can be naive, judgemental, and minimizing in their own awful ways. I’d like to think that I’m a realist, and that I take everything as it comes, trying my best to not be swallowed by one side or another. Like all other aspects of life, one’s thought process should also be somewhat balanced. I’d be lying if I said that I’m perfect at this, or even good at it. It’s a struggle trying to constantly take in both sides, especially when one is exhaling fire while saying, “everything is a fucking nightmare!” while the other is vomiting rainbows as it screams, “nothing is wrong at all! I’m FINE!”

As I have tried to navigate my life for the past 26 years, through the explosion of technology during my childhood, wars, shootings, historical events of every kind, the media shoving ideas down my throat, and being influenced by every little thing that hits one or several of my senses, I have come to one conclusion:

There is just as much good in this world as there is bad. The problem is, the bad is always louder.

I am constantly reminding my sister, myself and others that I love of this fact. The media especially, whether it is a news channel, a radio station, a website, or that insanely annoying trend ticker on the side of Facebook that I honestly can’t stand, loves to fill us with fear. It’s how they get our attention quickly and keep it. Let’s be honest – scary, violent events are also more interesting to hear about to most people. It’s unfortunate, but it is the truth.

On the other hand, there are many people who do share the good news…but only the good news. They reject anything negative for the same reason others soak it up; because they’re afraid. As the cliche goes, “ignorance is bliss.” Many people are happy being  removed from the problems humanity faces and since they feel their own personal bubble is not directly affected, they find whatever is happening to be irrelevant. The family I no longer have was especially keen on the phrase, “it isn’t my problem.” This is far from true. Regardless of what is going on, if it affects human beings, it affects all human beings.

So if neither of those seem to work, how is a human supposed to balance knowing that there are horrifying things happening in the world yet still be excited about the good things? How are we supposed to drown out the misery with happiness when the misery is just so much louder, screaming, writhing and slamming its fists with fury and hate? Well. I can’t tell you. However, Nadia Bolz-Weber can. While reading her incredible book Pastrix, her words lead my soul to a much needed realization. Since I can’t find the book, I’ll quote a message I wrote to my dear friend Nat after the Pulse tragedy in which I summarize Nadia’s point:

It is difficult to think that there is a way to continue living after 49 people were senselessly murdered, and the world after last Sunday feels uglier than ever. A while ago I read a book, called “Pastrix,” about an unconventional pastor who lives in Colorado. At one point, she speaks about one particular night when she and her small congregation had planned to go to the basement of a bar and sing hymns and enjoy themselves. This happened to end up being the day after the Dark Knight shooting happened. She said she wondered how she could possibly ask people to drink and sing in joy with her when such a horrific event occurred.

But then she says something that I find absolutely beautiful. She talks about how the devil causes havoc and thrashes because he has already lost, and he knows it, and it pisses him off. Likewise, this goes for those who are hateful and reject progression and acceptance of humanity. When horrible things like Pulse happen, it isn’t because people who reject us and hate us are winning; it is because they are losing, they know it, and therefore will go down kicking and screaming.

While I believe this is true, it doesn’t make the loss of life easier to swallow. However, I also believe that, as this writer says, the best way to carry on is to indeed, sing, and drink, and celebrate, even after tragedy. Not out of ignorance. Not out of apathy. But out of sheer defiance of that which tries to break us down. We carry those lost lives with us, and we defy the fuck out of evil in every one of its forms.

Thanks to Nadia Bolz-Weber, I was finally able to put what I had felt for so long into words. I truly believe with all my heart that for all the horrific, terrifying things that happen in our world, rather than allowing it to crush us or being too scared to acknowledge it, we instead defy. We sing, we celebrate, and we live on, which is both the best way to increase the goodness in humanity as well as to stand up and say, “I’m not fucking scared of you.”

There is so much goodness in the world and as human beings it is our job to raise it up with joy and allow the goodness to wash over us. Even when we are in so much physical pain that we cannot stand up, even when the television is spitting out images of murder, even when you’re so heartbroken you can’t think straight. Allow yourself to feel your pain, allow yourself to be acknowledged and understood, then look to the goodness in life and say, “I am broken, I am hurt, I am sick and I am scared, but it is not the end of me.”

Those of you who have followed me for a long while know that I speak this from experience, not from empty words. My life has been constantly tumultuous, terrifying, and painful. In my pain, when I am blinded by hurt, I still try with all the energy I have (which is rarely as much as I need) to acknowledge the goodness as well as the negative.

The kindness of nurses and doctors during my hospitalizations have so often made the terror of not knowing what my body is doing just the tiniest bit easier to handle. My friends Chris and Stan calling me to ask how I am after my ER trip, acknowledging my pain, and sincerely listening to me makes me feel loved and cared for while my heart feels like it is sinking into blackness and suffering with no hope of coming out. My friend Nat telling me they worry about me having to climb the steep stairs up to my apartment makes me feel like I am remembered and valued in a friend’s life. My friend Daniel telling me a character in a Manga he is reading reminded him of my grandmother and I (seen above) because of the character’s unrelenting love for children in an orphanage makes me feel understood and thought of despite us being separated by a few hundred miles. I could go on and on.

All of these gestures from strangers or people I love are quite small in the grand scheme of my existence, yet when they happen, they feel tremendous and pulchritudinous, like bright stars breaking through a cloudy, black sky. Most of the time, these words of love and kindness were not screamed, trending on Facebook, or acknowledged at all really by anyone else but us. Not because they are unimportant, but because they were wonderful in every way in their quiet, loving simplicity.

Goodness and love are not always louder than hatred and pain; but I promise you, they are always stronger. Always.

Thank you for inspiring this post, Luke.

This song has no lyrics, but it is beautiful and will almost certainly cause you to feel despite the lack of words. Click the title below to listen.

~Perpetuum Immobile – Penguin Cafe Orchestra

 

 

 

Two Player Mode: Eleanore and the Maloclussed Doctor

Dear beings made of squishy parts that cover the harder parts,

Hopefully all your parts regardless of density are in good condition. As you know, or maybe don’t, this week has been a general clusterfuck. I’m still sick, weak and emotionally distraught after my emergency on Monday morning and I just can’t seem to shake the pain from not only two syncopal episodes but also from falling literally on my face.Ow.  But I’ve already explained all that here. 

What I did not mention was the lovely silver lining that made the whole ordeal somewhat bearable. And that silver lining was my ER doctor. I can’t remember his last name, but I remember his first name was Shannon, so we’ll just call him Dr. Shannon.

I have been hospitalized, stuck in ERs and hospitals all my life and as a result have met many unforgettable nurses and doctors. I try to point them out because as I’ve said in a previous post, one of the hardest jobs a person can have aside from being disabled and chronically ill is being the person trying to save them. Everyone always talks about the times those in medical industry really fuck us over, because trust me, that also happens a good deal, but there is a tremendous number of spectacular people in this field and they deserve the proper acknowledgement when they make one of the worst days of my life a little easier to deal with.

After waiting, waiting, and waiting more because that’s the thing to do in Emergency Rooms (unless you’re coding and about to die, in which case I prefer the waiting), I finally met my doctor for the night. We went through the usual doctor and patient script. When I came to the part of explaining my symptoms and why I had passed out, I told him I was having severe pain in many places, including my jaw which even worse than normal. I continued to tell him that I suffer from a facial maloclussion; a genetic birth defect that causes the jaw to be malformed. 100% of the time, when I explain this to ER doctors especially, they haven’t the slightest idea as to what that means. It is no fault of their own. Maloclussions are more of a surgical and dental issue, so I try to not be irritated.

The second the word “maloclussion” left my, well, maloclussion, I immediately prepped myself to explain it. Instead, I was met with a response I have never, ever heard before, let alone from a doctor. “I have one too!” Dr. Shannon replied. My response was something along the lines of, “holy shit!”

Facial Maloclussions are a fairly rare condition, and despite seeing pictures of others like myself and talking to other people with facial or jaw issues, I have never talked to someone either on the internets or in person who actually has the same birth defect as I. What I find extraordinary is that for people who have moderate maloclussions, regardless of our genders or nationalities, we all look extremely similar when it comes to the shape of our faces. We all have long, narrow, slender faces, a trait caused by the fact that our jaws are often pulled downwards and back.

When he told me he had a maloclussion, I noticed that despite him being a nationality different than my own (because while it is shocking to believe, most people aren’t half Arab, half Austrian Californians like myself), his face was shaped similarly to my own. I use my big floppy bangs to distract from my maloclussion. He uses a beard to cover a surgical scar from a jaw operation. He explained to me that despite us having the same face shape, his maloclussion was the opposite of my own. His teeth in the front of his mouth all touch top to bottom, but as they go back, the gap between the rows widened. As for me, the teeth in the front of my mouth don’t touch at all, but the last two in the back of my mouth do. The gap between the top and bottom layers of my teeth is so large that I can clench my teeth and still stick my tongue through the space left in between. If you’re wondering why you never see me smiling with my teeth in the photos I post, you now have your answer.

I was so thrilled that Dr. Shannon was like me in this regard. Not only could he relate to how I look, but what was even more incredible was that for the first time I had met someone who knew exactly what I meant when I explained the TMJ spasms I have once a month, or as I like to call them, Charley Horses to the face. They’re excruciating, and no matter who I meet with whatever condition they may unfortunately be diagnosed with, I have not met anyone who knows what it is like to feel like Two-Face, half of my own visage fraught with pain every second. He knew how agonizing my neck and shoulders felt and how the migraines I get every day are enough to make me want to be like Rhys from Tales from the Borderlands and just shove a kinetic screwdriver into my brain. He. Just. Understood. It was the most astounding relief.

On top of it all, he was the first doctor to give me a better understanding of Vasovagal Syncope, and told me that there is actually medication I may be able to take to help prevent my syncopal episodes. He took the time to answer all of my anxiety driven questions and most importantly of all, and I can NOT stress this enough, he understood the importance of playing Pokemon Go. He was pretty much the most perfect doctor ever. When my adoptive mother, Rose, came with her granddaughter to pick me up and take me home, Dr. Shannon came to give me my discharge papers and I excitedly told her how he was the first person I’ve ever met like myself. He then proceeded to repeat everything to her that he had just told me. As the great Chris Hardwick says,

gauAgMc.jpg

It’s always thrilling to meet someone who loves the same bands, shows, movies or food as you do. Being able to share something you love with a stranger is often times what creates friendships and turns strangers into important people that you can’t imagine living without. Just about everyone can understand this feeling. It’s often times a very good one.

When it comes to chronic illness, disabilities, defects and other things that are not what you have chosen to have like a favorite band, but rather a part of your very being that you had no choice in receiving, it is easy to feel alone and alienated. Most of my friends are averagely healthy and don’t know what it is like to have my pain, to constantly be in the back of an ambulance, or to have the insides of their elbows repeatedly assaulted with catheters that leave ugly bruises. Of course, I’m glad they don’t know what any of it is like, because I wouldn’t wish it on even the worst of foes.

To meet someone who shares your pain, your memories, your defects or even just one of those strange medical experiences is like meeting someone with the same musical taste as you…times ten billion. They have a part similar to you, they understand, and best of all, you are a bit less alone in the strangeness. Of course, just because someone shares some of your pain or illness doesn’t mean you’ll be best friends forever, and it is certainly not enough to base an entire friendship off of, but it’s pretty damn exciting regardless. I try to take moments for what they are.

I wish I could hang out with Dr. Shannon and riddle him with questions about how he found out he had a maloclussion, how old he was when he began to have pain, if he always feels self conscious about it as I do. Did his jaw lock at a young age like mine did? Did he used to be bullied for it in middle school and high school like me? Did he get tossed between surgeons and orthodontists?

Oh god, the curiousity!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

…anyway.

Chances are I’ll never see my maloclussed, medically inclined Pokemon Trainer friend again, but I will say that it was, in an odd way, lucky to be in need of emergency medical attention on his particular night of duty. I always count myself fortunate when I am lead to wonderful social interactions, even if the journey to them is quite the opposite. I will not forget this moment where for once I wasn’t seen as a medical anomaly or a freak, but as someone who has a rarity in common with another human being. Just as I can’t forget the first Celiac I ever met (and now friend) William, the first time I met a girl in a college class who also suffered from chronic anaphylaxis, or when Zach Braff’s character on Scrubs came down with Vasovagal Syncope.

Thank you Dr. Shannon for simply talking to me like a person, not a patient, and being for being genuine, where ever you are. I mean. Probably in the ER at St. Mary’s I am assuming, or maybe hunting a Pikachu… but you know what I mean.

The writing’s on the wall,
It seems like forever,
Since we had a good day.

~Writing on the Wall – Ok Go (I’ve been listening to them a lot lately, not sure why)

 

 

Eleanore Vs. Ambulance Ride #Five Billion and Why My Body Gave Up

Dearest readers who I am too exhausted to make up a clever name for,

I had another emergency and it sucked like all the rest. I am in loads of pain, nauseous down to the core of my tummy, and my HP is at -1000. I took today off work and I am on bed rest, trying to muster the strength to do a little something, whatever that may be. While I am mustering, I will tell you the story of what the actual fuck happened to me.

First of all I have to express how dreadful it is to be a disabled person for many reasons, one particular reason being that you never know when a seemingly okay day will turn into a nightmare. In eight hours, I went from this picture, which is the one I took to thank all of you for being the absolute coolest:

thank you

To this picture that I took in the Emergency Room five hours into my hospitalization just so that I could put this in the blog:

20160725_071231

I’m not sure if this is one of those things that only I can see, but these pictures are vastly different in more ways than just the background, hair and clothing. In the second one, I actually thought I was smiling as best I could. Turns out, I wasn’t, but I was too zombified to take more than one photo. So how did I get from the first to the second?  Truth is, I don’t know. But this is how the past 30 something hours have gone.

Saturday after being out most of the day I began to feel weak and was starting have chest pain. When I say I started to feel weak, I mean I started to feel even weaker than I normally do, and I am normally quite weak. Despite being covered head to toe in pain every day, chest pain is not something I normally get so I was already concerned. As the day went on, all my symptoms got worse and all the rest of the pain I have in my jaw, neck, shoulders, and everywhere else was quickly increasing. Something felt wrong, but I often feel wrong, so I ignored it. Sunday came and went with relative ease aside from feeling far too sick, and before I knew it, I was happily in bed, exhausted and ill.

At 2am on Monday morning I awoke to not only pain, but to the booming thunder and strobe light lightning as a summer storm raged outside my window. My pain seemed to be at its worst yet, and I couldn’t get back to sleep, so I sat up in bed and watched the light dance through my apartment. After ten minutes the constricting in my chest and the pain in the rest of me was becoming truly unbearable. I shook my boyfriend awake and said, “babe, I really don’t feel good.” And then I promptly passed out.

I woke up on the floor, which is not totally odd for me since I suffer from Vasovagal Syncope. I was covered in sweat, nauseous, and the pain in my body was surging through me like I had been possessed by a fiery demon. My chest felt constricted more than ever before. My boyfriend got pillows to elevate my feet (the standard response to a Vasovagal episode) and I lay on the floor writhing and dry heaving. Sexy, right? After a few minutes he took my blood pressure. I am hypotensive so my blood pressure is always low, and since Vasovagal episodes lower it even more so, my readings after the episodes are so low they probably have seen the core of the Earth. However, this time was the lowest reading I’d ever had in my life: 55/50. We both knew two things- I had to go to the ER, but I wouldn’t be able to get there without passing out at least a few more times. So, we called an ambulance.

I remained on the floor in my miserable state and soon enough the Paramedics trudged into my bedroom. They asked all the usual questions. Who are you, what happened, medical history, are you a Pokemon Master, and so on. They lifted me up and strapped me into a metal chair that they use to get people down staircases when gurneys don’t work. As soon as the last strap was on me, I lost consciousness again, and they had to unbuckle me and lay me on my bed. They then asked my boyfriend for a hanger from my closet, inserted a catheter into my arm, and hung a bag of saline from the door. We waited for nearly an hour until my blood pressure was decent enough to allow me to sit up again without passing out. Finally, I was put into the chair, carried down the steps, put on a gurney, and was en route to the ER faster than you can say hypotension.

I arrived at the ER sick and scared as most people delivered by ambulance do. I waited, I was tested, I waited more. There’s always a great deal of waiting done in these situations which seems unfair considering having to wait to find out what’s wrong with your body is never an easy task to handle. But I waited and waited some more. Finally my doctor came along* (mini post about him in the next post because of really important reasons). I explained again what I had experienced and how despite my fears  I was quite sure I just had one of my many vasovagal episodes, but what had triggered the episode was a mystery.

At one point he asked me, “well, how do you know it was syncope and not your heart?” And in a sudden increase of fear I replied, “well…you have a point. I just don’t know.” Touche, awesome doctor man. I asked him if there was any way to tell the difference between passing out from Vasovagal Syncope, a heart issue, or a brain issue, because one thing I always fear is that I will one day blow an episode off as Vasovagal when it was actually something far more dangerous. He said that unfortunately, there is no way to tell aside from doing all the tests that rule out different conditions. That was exactly what I did not want to hear. So I sat and worried more about my brain and my heart while I was being eaten alive by pain.

After ten hours the tests all came back and my heart was presumed to be okay. It was decided by the doctor and the tests that the reason for my episodes was the same as why I have had these episodes before; my body was so overwhelmed by pain from all that I have been diagnosed with that my body pretty much said “fuck this,” and short circuited. The doctor was still slightly worried about proper blood flow to my heart though, so he asked me to do a stress test as soon as possible. It’s not horrible news but it isn’t good news either. Basically, my body couldn’t stand being my body anymore and gave up. This unfortunately happens to me somewhat often, and it’s painful and depressing.

On top of it, my pain especially in my head, jaw and neck are now worsened by the fact that I hit my head on the floor when I passed out. I feel like Two-Face from Batman, the two halves of my face feeling completely foreign to one another. I am also worried that I may have worsened the Syrinx in my spinal cord, since I was told that every time I pass out from a Vasovagal episode I run the risk of making it worse. When I told the nurse at the ER this, her response was, “my best friend has a Syrinx too. She’s in a wheelchair now.” Well, that made me feel tons better.

Since coming home from the hospital I find myself still scared and feeling as if the right side of my face will simply fall off at any given moment. My temple, my jaw and my neck on my right side are hurting terribly and have no intentions of leaving me alone. I have mostly slept yet I am still too exhausted to even do the smallest things like walk across the apartment, and I really just want to hibernate.

. In short, I feel entirely broken, and I’m sitting here wondering how I’ll turn out. Will the Syrinx one day get so damaged by my never ending syncope falls that I too will end up in a wheel chair? Is it really true that no matter what I do and no matter how hard I try I’ll never amount to anything more than a sick, sad, broken girl whose diagnoses rule her life?

When I first started this blog my intention was to help others such as myself and always have the answers, or at least positive, hopeful suggestions. But the fact is, that wouldn’t be honest of me, because I don’t always have the answers or happy, tight knit conclusions. Sometimes I have to tell you that I am terrified and I am lost navigating a world of disability and pain that most people I am close to don’t even come a little bit close to understanding, and it’s all incredibly heart wrenching and difficult.

I want to tell you that no matter what I’ll be strong and be able to figure it out, and that it will get better, but as I sit here sick with tears running down my messed up half of my face, the thought running in my head over and over again that not even Paramedics were able to get me to sit up and get me to the ER because I was too broken, I don’t feel strong, inspiring or hopeful. I feels scared and broken and alone. I don’t know if I should be sorry. But I’m sorry anyway.

I’m an outsider, outside of everything,
Everything you know, everything you know.
It disturbs me so.
Everybody tried to push me, push me around,
Everybody tried to put me, tried to put me down.
All messed up, hey everyone, I’ve already had all my fun.
More troubles are gonna come, I’ve already had all my fun.

 

 

 

Eleanore Vs. WordPress and YOU! (and Me)

Dearest readers and fellow bloggers and fellow humans,

Hey, Hi, Hello. How are you?

This is simply a post to just say a few things that are on my mind. I have several full posts cultivating in my brain that you will hopefully be able to read soon, but for now, I wish to give you this.

First and most importantly, I feel a tremendous need to express my gratitude, and I mean it with all the sincerity within me. I have just over 70 followers now, and while in the internet world that is a very small number, to me, it is enormous. Like, seriously monumental. The fact that 70 people follow my blog and are not only interested in my life but also enjoy my writing is astounding, intimidating, and frankly, slightly confusing as I tend to not think much of myself considering my self esteem has been beaten out of me over the years. But truly, I cannot thank you all enough. Thank you (times a billion).

I have said this before and I’ll say it again; I know I am bad at the whole social part of blogging, but I am really trying my best to to slowly yet surely make my way out from under my blanket of fear, self deprecation, and anxiety to reach out to others. It has only been a month since I’ve seriously been acting upon this, but within that month I have discovered and spoken with some truly incredible people.

The people I have come into contact with on this site are amazing, though I’m not sure that’s a good enough word. Each of us are the protagonists of our own adventures, fighting our villains, some of which we share such as chronic illness. I am honored and elated to connect with people such as yourselves. I think you’re all  fabulous and important.

Even on your very lowest days, if it helps at all, just think to yourself, “It’s going to be okay, because Eleanore from the internet thinks I’m awesome.”

Furthermore, if you get on WordPress at any given time and find you have a bazillion new likes and comments from SicklyStardust, It’s because I have found that I am able to focus best when I loosely organize my time. Every morning I go into my Habitica App (if you have not heard of this and are a person who likes to make lists, click here to check it out. I used to make my lists on my whiteboard but this is SO much better!) and I make a To Do list of everything that needs to get done that day. This helps me to be more productive and organized. It also helps me to control my anxiety, since usually every morning I wake up feeling so overwhelmed by my life that I end up petrified like I just got attacked by a Basilisk.

At least once a week I take a few hours to go through WordPress, find new people to follow, respond to other’s posts, and so on. It seems to be the only way I can be assured that I won’t let that part of this slip away from me, as I often feel it does. So far, it’s been going quite wonderfully and I truly enjoy the time I set aside to adventure through this site. With time I am hoping it will become more natural for me to balance writing and communicating, but for now, it goes on the list!

Lastly, about my videos. I have stopped making YouTube videos for the time being, but this hiatus I am hoping will be temporary. I partly stopped because the last few months my physical and mental pain have been worse than usual, but there have also been new developments in my life regarding my health and that now takes even more of my time than it already does. I’m not ready to share what’s going on with that yet, but I will soon, once I am both ready and understand it all a bit better myself.

So there you have it, my love, my updates and thoughts from that strange machine that sits in my skull. As one of my childhood heroes says, TTFN- Tiny Tulips Fight Nastily. Wait. Tentacled Tortoises Find Necromancer?

Ta Ta For Now. 

(And thank you).

The warmth of your love’s like the warmth of the sun,
And this will be our year, took a long time to come.
Don’t let go of my hand, now darkness is gone,
And this will be our year, took a long time to come.

And I Won’t forget the way you helped me up when I was down.
And I won’t forget the way you said, “Darlin’ I love ya”
You gave me faith to go on – now we’re there, and we only just begun.
This will be our year, took a long time to come.

~This Will Be Our Year – Ok Go

 

 

 

 

 

Sickly Stardust Vs. Being a Sickly Gamer

Dear Earthlings who are super glad to not live on Pandora (which should be all of you),

A few months ago I created my video game themed blog about my health, and that sentence doesn’t particularly make a whole lot of sense. While the reason takes a great deal of explanation, the only explanation that is pertinent for now is my love for videos games that was established before the internet was a  even a thing. Imagine a life without internet; it mostly consisted of Mech-Warrior, really glitchy Sims, giant monitors and tons of Minesweeper. As I got older I became unhealthily addicted to video games and had to cut back for the sake of my sanity though I still played frequently. Unfortunately, as I have grown I have also become significantly more ill and so I have found myself in a conundrum.

I am a chronically ill gamer whose chronic illnesses make it near impossible to play many games, as they can aggravate my sicknesses. I don’t play nearly as much as I’d like to, and it’s questionable whether I can even be called a “gamer” at all. Sometimes it’s due to my constant nausea, migraines, or nerve trouble in my dominant hand, while other times it’s my anxiety, brain fog, or depression. Almost always, it’s a mix of my entire list of diagnoses making me miserable all at once, preventing me from functioning as a healthy human should.

When I was younger my best friend, Stan, and I would spend every summer day from 11am to 6pm (or longer when we were able to get away with it) playing on either his computer or my Playstation (did you just hear PLAY-STA-TION in your head, because I certainly did). We would play everything we could find, including two of my favorites at the time, Prince of Persia and Vampire the Masquerade* (there’s a particularly silly story about this game that I will write in at the end). I could handle it all.

Four years ago, as my health was accelerating its decline, I started noticing that when I was playing a video game, specifically first person shooter games, I would start to get sick. I remember the first day I noticed it while playing Portal. I began to feel intensely dizzy and nauseated and had to trade in my controller for a bed where I promptly assumed the fetal position.

I’ve heard many people say Portal in particular makes them sick, and it’s understandable why. The whole jumping through portals thing really does a number on your eyes…and stomach. However, it soon became not just this game alone, but all others that require me to look through the lens of my character. All of them made me sick.

After a year or two I was explaining this to a friend and they found out that there’s a very good reason why I get so sick from first person view games. Plot Twist: it isn’t related solely to my chronic illnesses. It was explained to me that humans and animals have what’s call the “Field of View.” This handy dandy chart that I found on the Google can show you exactly what I mean:

MISB_ST_0601.8_-_Horizontal_Field_of_View

As you can see, we have a horizon to our vision. Apparently, for some people such as myself, the reason FPS games make us sick is because our vision is constantly bouncing above and below the horizon line, and our brains don’t like it! This is such a problem for some gamers that people have started make mods that supposedly fix the problem and keep the view stationary to help our brains feel like exploding less.

Between this problem and all the ones listed above, gaming has become quite the challenge for me, and it’s consistently infuriating. For a while I wasn’t playing anything at all, not even an app on my phone, because I didn’t see the point in wrestling with my brain and body to make it kind of work only to play for an hour before I still end up getting sick.

BUT THEN. A THING HAPPENED.

For my birthday Stan got me three new games on Steam. Upon entering the code to retrieve one, I was disappointed to find out he had bought me Borderlands. It isn’t because I dislike Borderlands, it’s actually the opposite. I adore the Borderlands universe, but I’ve tried several times to play it and my brain does not enjoy it. I began somewhat annoyed because I had just ranted on the phone to him about this a few months earlier, telling him how much it sucked that I am unable to play so many amazing games, especially Borderlands. He didn’t listen to me at all!

My disappointment was instantly satiated (and I felt like a bit of an asshole) as I realized that he did not get me Borderlands, but instead gifted me Tales from the Borderlands, created by a company called Telltale Games. The game play works as an interactive movie. It’s a simplistic version of the Borderland games, and it’s incredible. It’s the most wonderful game for me, a sickly gamer, as it is simple to follow without being boring, still has plenty of things to do without being exhausting or anxiety provoking, and doesn’t make me sick at all. On Tuesday, for the first time in years, I was actually able to play a game for more than an hour without any physical or mental repercussions aside from wanting to stay in and play even more rather than having to go outside and adult.

I don’t think this company realizes exactly what they have done. I know for a fact I am not the only chronically ill gamer in the world who may have a hard time finding games they can actually play, especially for a long period of time. Slowly I am regaining a passion that I had stolen from me by my illnesses and I could truly not be happier about it.

As for the labels gamer or not gamer, I’ve realized they’re both irrelevant. I’m just a person that is passionate about lots of different things. I’m also a person that has to fight endlessly to keep those passions alive as I am physically and mentally ridden with obstacles. Life would be easier if Loader Bot could blast them all away, but I’d probably be blasted away with them. So, I’ll just have to make do. In the off chance of someone from Telltale Games seeing this, thank you, thank you, thank you, for making games that are less frustrating and truly fantastic for people like me to play. And if anyone has any suggestions on more games of the same style, please let me know!

Bonus Story about Vampire the Masquerade (might contain spoilers):

Vampire the Masquerade is an old PC game Stan and I were in love with as younglings. It was bloody, scary, and exhilarating. We often played in his dark blue bedroom, doors and curtains closed tight so that the sunlight could in no way enter our black hole and distract us from our missions. In one particularly frightening part of the game, we had to go through a haunted mansion and follow a ghost. She eventually leads us to a boiler room, where  we meet a very angry poltergeist who starts to attack us.

As we are trying to not join the two frightening characters on the “other side,” Stan’s bedroom door suddenly opens just a crack. We look at each other for a moment, a tiny bit spooked, but quickly carry on with the game.

The battle goes on and tensions are high. Then, out of nowhere, we hear a loud crash behind us, and we both scream, convinced that somehow the ghosts in the game have come out of the screen and wanted our blood. We turn to find that his cat simply jumped on his bed, which was piled with all kinds of junk, creating the crash. She looked up at us and meowed as if to say, “really guys?”

We promptly paused the game and went outside.

So you come a long way,
But you’ll never have me.
Never have things for a normal life,
It’s time to busy earnin’
You can’t get enough.

~ Jungle – Busy Earnin’ (Also the intro song for Tales from the Borderlands)

 

 

 

 

Eleanore Vs. Odd Conversations

Dearest readers,

Lately, I’ve been leaning towards the Dark Side. While it isn’t a good feeling to be sick, in pain, frustrated, and all the other nasty feelings I face on a daily basis, I also think that in the slightly overused words of John Green:

That’s the thing about pain. It demands to be felt.

At this point, millions of people relate to this quote for every reason under the sun (just kidding. I live in Missouri, the sun does not exist here). I find it really hits home for those of us who are perpetually sick. I believe that it’s alright to go to the Dark Side, that sometimes you have no choice in the matter, and that the first step to getting better is almost always hurting more, getting worse, and fighting your way through the sickness with bloodied knuckles and plenty of tears.

BUT!

I also appreciate breaks in the misery, and that is exactly what I am hoping this post will be. I have always fought to retain my sense of humor. I’ve done pretty well at this so far, and hope to continue to do so. Even in the worst conditions, I try my hardest to make nurses, doctors, and others laugh. I try to remember my compassion, and be aware of the fact that while few jobs are as difficult as being chronically ill, being a nurse or doctor is definitely on the same level. Both sides seem to experience more bad days than good. Whether we are the ones struggling to breathe or the ones rushing to help someone regain their breath, we are both fighting against the most vicious battles for life. So, we all deserve a little comical relief now and then.

I am a very silly person at times, and if you have followed me long, you’ve noticed I don’t have much of a filter and generally say whatever I like. This makes for very interesting conversation with strangers. My darling readers, I present to you, a small collection of ridiculous conversations I’ve had, that when I look back on, cause me to giggle and wonder how anyone talks to me at all (while also hoping they at least made the other person’s day a bit more interesting).

Regarding Eating Gluten Free

Cashier: Oh, you eat gluten free! Me too!

Me: Oh really, cool! Do you have Celiac Disease as well?

Cashier: No, I just do it because I think it is good for me.

Me: Oh. That’s cool. I eat gluten free because otherwise I’d die.

Cashier: ……

Cashier:……………

Cashier:.……………………………

Me: Uhm…bye.

Regarding an X-Ray

Tech: Oh I’m sorry I didn’t tell you before, but could you remove your bra from under your shirt? The underwire would interfere with the images.

Me: Yeah, I mean, if teenage boys can do it, I’m sure I can too!

Tech and others: *laughter*

Regarding my sexuality

(Somehow our conversation about nerds got turned into a conversation about sexuality)

Cashier: I’m sorry, I know bisexuals totally exist, but I have to stick to my beliefs. You’re either gay or not, there is no middle. It’s like a buffet, you can’t have tacos and hot dogs in one sitting.

Me: (Loudly) Oh, but I can, because both are delicious.

Cashier: (Stunned into an awkward laugh while man behind him is staring at me) ………have a good day?

Me: You too!

Regarding my Hysterectomy

Me: (Explaining to OB/GYN about how a male doctor at Urgent Care looked inside me using the metal tool and exclaimed, “Where’s your uterus?!” And how I found it ridiculous for a doctor to ask me that)

OB/GYN: That’s hilarious, I can’t believe that! Next time that happens you should tell him, “I don’t know, I just had it yesterday.”

Me: Or I’ll tell him I left it in my other purse, because that’s totally a normal thing that happens.

Regarding Phlebotomists

Me: You know, when I was a kid I had my blood drawn so often that I began to think you guys were actually vampires, and instead of testing my blood, you would actually just drink it.

Phlebotomist: (Who had been completely silent up to this point)  We do.  (Smiles widely) 

Me: Oh. My. God. I knew it!

Regarding Myself Making Cashiers Feel Weird About Life

Me: Hey, do you remember me? I’m the one that freaked you out by telling you I eat gluten free so I wouldn’t die.

Cashier: OH! Yes I remember that, oh my god, I was shocked, I didn’t know what to say!

Me: I know, I’m sorry…I promise, I’m really not an asshole. I just kind of have no filter.

Well, there you have it, a glimpse into how I try to communicate with people. I don’t think I am very good at it, but I hope this made some people laugh. I also keep asking MRI and CT-Scan techs when I will finally be turned into a ninja turtle from all the scans. They keep saying they don’t know, but I remain hopeful.

I’m suddenly craving pizza.

The time has finally come for us to be the greatest
Cause heroes aren’t born, they’re created.
Long before our days begins,
What every heroes needs

Is a big O greasy pizza.

~Pentatonix – We Are Ninjas