Eleanore Vs. Feeling Explosive

Dear readers whose stardust is hopefully well contained within them,

This weekend I was incredibly productive…well, sort of. You see, anxiety is a strange creature. Often times it is crippling and leaves me practically petrified, unable to function at even the most basic levels. As I often describe, it feels like my brain is short circuiting. Severe anxiety causes me periods of excruciating mental and physical pain and even on rare occasions triggers my Vasovagal Syncope (click the blue stuff if you don’t know what that is), which as a result causes me to lose consciousness. I was relieved a few years ago when after a syncopal episode, I was talking to a nurse and she described it the exact same way. “Your brain is short circuiting and then restarts, literally like your computer,” she told me, to which I wanted to reply, “oh thank god, someone actually gets it.”

On the other hand (or other lobe, since we’re talking about a mental disorder I suppose)  my anxiety can also make me feel as if my body is overflowing with energy that I have no way to expend. While I am forever thankful that I am self ambulatory, my body is very fragile and somewhat weak, even when I feel like Dr. Frankenstein himself has put me on his operating table to electrocute me back to life. My mind is overwhelmed with energy yet I cannot be as physically active as I wish; I can’t jump around and dance like I used to, let alone walk medium length distances at once. Though believe me, I wiggle with ferocity.

When my mind is screaming, “let’s compete in a triathlon!” and my body replies, “bitch, please,” I am left alone with my anxiety and frustration. On my better days I do yoga and try to be as active as possible, but on the worst days nothing ever seems to be enough. Some days I am bedridden completely. Though I try my hardest not to, the feeling that I have too much inside me that I can’t get out makes me feel like I’m ready to explode. In order to prevent myself from turning into Negasonic Teenage Warhead with perpetual resting bitch face, this weekend I took the route of doing as much as I was capable of until I burned myself out. However I somehow became so anxious and restless that even Methcarbomal, the muscle relaxant I take to ease my nerve and muscle pain, couldn’t get me to sleep.

Saturday morning, I woke up at 8 a.m, cleaned out my fridge and did the dishes. Then I folded the laundry, did Yoga, painted my nails and after Aaron came home, we set sail to one of my very favorite events in St. Louis: The Strange Folk Art Festival. We walked about, I got a few adorable thingies, we saw our friends, and we returned home. by 4 p.m. I thought I was done for as I plopped into bed. My body ached and I could barely keep my eyes open. All I wanted was sleep, yet despite my “Time to Chill” playlist and the fact that I had burritoed myself with my blanket, I could not sleep. I wiggled, I squeaked, I plumped pillows and rolled all over the bed to find a comfortable position. Nothing.

Once I lost my battle with sleep I got up to make dinner, then cleaned the rest of the kitchen and the bathroom. My physical energy was entirely depleted, yet my mental energy was still at an all time high. No matter what, I could not win. Finally at about 11:30pm, after another hour of tossing and turning, I was finally surrendering to the Sandman (not the Neil Gaiman one, the cute one from Rise of the Guardians…just  to be clear). I was pleased about this, until I woke up at 6:30am Monday morning. Balls!

I cannot tell you how often I’ve done this exact routine, and it never gets easier. I feel similarly to Jean Grey from X-Men, fighting to contain power that I wasn’t made to hold. Dramatic, right? I’m certain I’m not the only chronically ill person to go through periods such as these. It seems in this situation there really is only two options. You can physically exhaust yourself to the brink of destruction in hopes that your mind will become exhausted as well. Though if it doesn’t, you’re usually left feeling more anxious and frustrated. Or, you can constantly go up and down;  you do a little here and there, rest for a bit, then do a little more and repeat. However, I’m starting to notice that option can be extremely mentally aggravating to me more often than not, and it causes me to be more sluggish and discouraged rather than productive.

Sometimes I imagine myself as a robot with a computer in my head that is incompatible with the rest of my hardware. It is endlessly exhausting to be at war with my entire being at all times. Even when I do figure out what’s best for me, the routine is often interrupted by sudden illness and unexpected pain that lasts anywhere from days to months. I’m infuriated even more when I overexert myself, thinking that I am capable of more than I really am only to be fraught with pain by the end of the day. What’s a sick girl to do?

Of course there are activities I partake in to try to quell the madness. Reading, video games, writing, and other less physically tasking things, but even still my mind feels insatiable. Suffering from chronic illness can make me feel as if nothing I do is ever satisfactory, because no matter what it is, I still feel like I should be doing more. I’ve never known a day that wasn’t painful. I may never experience a day like that, but if anything I keep hoping and striving towards a day where I’m living my best and am at my happiest despite my pain and inability to get out my energy. I think that’s entirely possible, even if I’m not sure how exactly I’ll get there.

Chronically ill humans, do you ever feel like you have more energy than you can release? Do you ever feel like you’re going to just burst? How do you handle it? Do you ever feel like a plastic bag? Wait…that last one was Katy Perry, not me. Leave your comments below!

I guess what I’m trying to say, is I need the deep end,
Keep imagining meeting, wished away, entire lifetimes,
Unfair we’re not somewhere misbehaving for days,
Great escape, lost track of time and space,
She’s a silver lining, climbing on my desire,

And I go crazy ’cause here isn’t where I wanna be.
And satisfaction feels like a distant memory.
And I can’t help myself,
All I wanna hear her say is are you mine?

~R U Mine – Arctic Monkeys

 

 

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. Living with PTSD

TW:  Physical abuse, psychological abuse, violence, verbal abuse

Dearest readers,

I don’t know why, but whenever I think of PTSD I think of the video game American McGee’s Alice. Anyway. This is a post of mine that is ridiculously demanding to write, but as I continue to live with the condition, I feel more compelled to come out about it. In the past, the most arduous posts I’ve written have helped to the greatest extent, so I believe the battle is worth it.

Before I get to my personal experience, it is dire that I get this fact out of the way first. Far too many people believe that PTSD is only for those who have fought in wars; this is couldn’t be farther from the truth.

While it is true that those who fight in wars often do come back with PTSD, there is an endless amount of other experiences that can give you the disorder as well. Being present during a terrifying event, a horrible accident, losing someone you love (especially suddenly), chronic illness, being abused…in reality, any traumatic event of any kind can lead to PTSD. On the other hand, not all people who experience traumatic events are diagnosed with PTSD. This explanation from the National Institute of Mental Health explains it perfectly:

PTSD is a disorder that develops in some people who have experienced a shocking, scary, or dangerous event.

It is natural to feel afraid during and after a traumatic situation. Fear triggers many split-second changes in the body to help defend against danger or to avoid it. This “fight-or-flight” response is a typical reaction meant to protect a person from harm. Nearly everyone will experience a range of reactions after trauma, yet most people recover from initial symptoms naturally. Those who continue to experience problems may be diagnosed with PTSD. People who have PTSD may feel stressed or frightened even when they are not in danger.

For people who have had to live through not just one but a steady stream of trauma their entire lives, the one specific experience that started it all becomes terribly hard to find. The beginning of one trauma and the end of another are convoluted, and life as a whole seems to become just one large traumatic experience in itself.

Personally, a combination of constant physical and emotional abuse mixed in with many terrifying medical experiences together make for a dreadful mix that has developed into my Post-Traumatic Stress Disorder.

A key to understanding PTSD is understanding triggers. A trigger is exactly what it sounds like; something that triggers your mind into recalling an emotion, memory or event. A trigger can be practically anything. My triggers can be as insignificant as smells (such as bactericide) or as enormous and having to go through the same event again (such as a fight with a person who has abused me or another overnight ER visit). So now we have every part of the equation. Traumatic event + triggers = PTSD. I am terrible at math, but I can compute that!

Daily life with PTSD feels like playing a video game. Every second is filled with obstacles that I have to overcome, and if I don’t overcome, I’m unable to move forward. The triggers can throw my entire day off and completely switch my mood. I’m absolutely positive there is a movie screen in my mind that comes with a remote. Each button on the remote is a trigger, and when one is pressed, the scenes start playing. Sometimes it’s one particular scene playing over and over, while other times it feels like millions of them playing at once (think Matrix and the room with the televisions). Either way it is overwhelming as well as mentally and physically exhausting.

Even an action as small as putting face cream on after a shower is enough to trigger me. It happens every single time I do it, and I used to be unable to finish despite my desire for a smooth face. Whenever I smooth lotion onto my face, I flashback to watching my mother do it to herself. Her motions seemed violent and angry. She would furiously and quickly rub her face while looking into the mirror with that perpetual scowl of hers, and it seemed almost painful. Once that memory comes back to me, dozens of others follow. Every time she’s hit me, screamed at me, or done any of the terrible things that have forced me to remove her completely from my life all come flying back at rocket speed. I can see it all so clearly, just as if I were watching television, and I never seem capable of making it stop. The simple daily ritual I have of putting on lotion causes a horde of the abuses I have endured to be unleashed. Nowadays, I concentrate extremely hard to slowly and gracefully get ready for my day, even if I am in a rush. I am still triggered every time, but it hurts a tiny bit less.

Not only are days frustrating to get through, but nights are no better. PTSD makes it difficult to fall asleep, but if you pass that hinderance, being asleep can be also be problematic. I have always had realistic dreams and I can remember the finest details of most dreams that I’ve had. Sometimes this is a blessing as many of my dreams are beautiful and intriguing. Many other times, it causes me to jolt awake with a gasp (on occasion even scream) as I wake from a nightmare.

For the longest time I actually thought it was normal to have ultra-realistic nightmares, but turns out that when they are about those who have abused me abusing me further or a retelling of a traumatic event I’ve already experienced, it isn’t. I wake up shaken, gasping for air, and I feel legitimately threatened and terrified. It may take me a few minutes to understand that what happened was only a dream and to start to calm down. Once in a while my nightmares will cause me to cry or have full anxiety attacks, which last for what seems like an eternity. It’s a bit discouraging that even while I rest, I cannot escape my PTSD symptoms.

Everything I do on a daily basis has the potential to trigger me. Putting my lotion on. Tasting something particular. Hearing a song. Having someone completely innocently say something to me someone awful has told me before. Smelling the scent of the hair dye that is used all day at my work that is akin to the smells in hospitals. Being touched at the top of my back or underneath my arm. Every little and big thing affects me in the worst ways, and again, it is endlessly exhausting. If I’m completely honest, I get overwhelmed by it more than it’d like to admit, and considering this is only one of my many illnesses, I feel that I just can’t handle it sometimes. I wish my brain had an auto pilot function so the remainder of it could rest.

Some of my triggers I have learned to push through. Others I must avoid entirely. Back home in California, there were certain places that I simply could not go as I would be drowned in triggers and anxiety. It’s unsettling when PTSD prevents me from doing something entirely because many of those things I truly loved doing, but I end up feeling that I have to relinquish them for my own wellbeing. There was a particular place in the hills  back home where I could walk along a path and see millions of stars. I miss it dearly, but the memories I have there are enough to cause my brain to short circuit. Though I wanted to visit it once more before moving, I never had the courage.

While it’s natural for most people to have memories recalled by certain events and memories, it usually isn’t as disabling and anxiety provoking as it is for those with this condition. Some of my favorite bands I’ve had to give up listening to due to how they trigger me, while others I can only listen to on my better days. If I’m already feeling unwell, listening to Angels and Airwaves or Blink-182 is out of the question, as both of them trigger me. (At least I’ll always have Green Day which only makes my heart soar, even on the worst days).

Thankfully PTSD, unlike most of my other illnesses, is actually curable. While I don’t have the the proper treatment I need right now, I am working towards getting it. Even if I have to live with this condition another 5 years before I am able to get the help I need, the fact that I can eventually be cured of it gives me hope. As for now, I’m not entirely sure how to cope with all my triggers but I try my absolute best every day to not be crippled by them so that I may carry on.

I hope that PTSD is taken seriously by others and that those who do suffer from it don’t “one up” each other. Anyone suffering from PTSD is struggling, regardless of what theirs stems from or how it affects them on a daily basis. I also hope that people understand that I am not minimizing the PTSD that those who have lived through war struggle with; I only wish to explain that PTSD of those who suffer in other ways is equally important.

I look forward to a future in which hopefully I’ll be triggered less frequently. Living life in fear doesn’t feel like much of a life at all, especially when despite how hard I work to move forward, the hands of my PTSD work even harder to pull me backwards.

Here’s to new memories that with time will overwrite the horrible ones, and new triggers that bring joy instead of pain.

For more information on PTSD click here. This page is incredibly helpful and describes all aspects of PTSD wonderfully. 

I don’t believe the lies,
Reading between the lines,
I don’t belong here any longer,
I’ll be gone this time.
I don’t believe the lies,
This is the last goodbye,
I don’t belong here any longer,
I’ll be gone this time,

Watching your lips move together,
Nothing’s making sense,
Talk to me.

~Majoring in Minors – Sugarcult

Eleanore Vs. Meltdown #5000

Dear friends who are less melty than I,

As you know (or don’t but soon will) I am quite transparent about my life because I am a person, and being one includes being honest about all the good, all the bad and every single bit in between. It’s still harsh sometimes to admit the more extreme challenges I go through. For example, it’s distressing for me to admit that I constantly have crying episodes, breakdowns and panic attacks. Part of it comes from the fact that I have PTSD, depression and anxiety. Part of it comes from the fact that my life has always been trying. All of it comes the fact that I am simply me, attempting my best to make it through the life I have been given with hardly any choice.

Earlier tonight I broke down for the same reason I often do. While I want to fight through it all, being chronically ill, disabled,and just about broke with no family save for my sister and my Alzheimer’s ridden grandmother is a massive amount to take on. Now and then the stress of it all crushes me, and I fall apart, but I always seem to come back together. With every explosion of my emotions and every repair of my soul, it never gets easier to be who I am.

I’m absolutely one of those people who cries whether they are angry, sad or scared. Any negative emotions usually come out of my eyeballs in the form of seawater. So, tonight I began to cry even though I wasn’t sad. I was frustrated beyond compare, a raging, angry fire in my heart, igniting my words as they were arriving faster and faster from my lips. My tears increased their speed as well as I spoke words I’ve spoken so many times before:

“Every moment of my life I’m sick and in pain, and on top of it that I’m told my government doesn’t care about me because I’m ill and can’t pay my way through life. I’m told by so many to move to a different country, but others in different countries struggle as well. At the end of the day it seems that nobody really cares if I live or die. No one believes that I deserve to have a beautiful life because I am different and I am not like everyone else, and no matter where I go, I just don’t belong.”

I know that all sounds dramatic and bleak, and despite being sort of an asshole sometimes, that usually isn’t my style. But in certain times it truly seems like my reality. While fighting for disability, Medicaid, and other assistance that I’m scrambling for because I have no family and was too sick to have an average life with average jobs, I have obstacles thrown at me from every direction. Every single time I feel that I am making a step towards a better life, I’m floored by more insane rules, requirements, and wait periods. My disability lawyers told me themselves, “the government doesn’t care about people who are disabled.” Even before I met them, I felt the truth of that statement every second.

The government riddles us with requirements and fiery hoops to jump through before we even get an pinch of help. When we finally do get help, we’re put into a situation that literally prevents us from ever being able to move forward so that we no longer need that help; we’re practically forced into poverty and complacency with the minimum requirements to live. Then we’re told we should make it on our own, yet most places have no desire to hire someone who is chronically ill and disabled, and those who do pay us hardly anything. If you have a family to support you emotionally and financially, it’s significantly easier to get through it all. If you’re like me, and don’t have a safety net or a back up to aid you, every day feels like trying not fall off a very thin and weak tightrope, and life becomes a macabre circus – everyone gawking and laughing and sharing their opinions, but no one doing anything to help as those like me struggle to keep from falling.

I made this blog to be a spark of hope in all the darkness of illness, but I feel part of that means acknowledging the darkest parts. This is one of those darkest parts. Being disabled and chronically ill is tumultuous and it is made even worse when  a person does not have nearly as much support as they should. I get so fucking angry about my situation and I feel entirely helpless which only makes me angrier. I want to scream and punch things and lash out like all the punk kids in mosh pits that I grew up with. But I could never be one of them, for if I scream too loudly my throat will ache and I’ll lose my breath. If I punch something I would hurt myself because I’m more fragile than others. I can’t jump and lash out, because my body doesn’t allow it. So what do I do instead? I cry. And I write.

I put a good deal of effort into not getting too involved with current events, politics and the like on my blog because it is terribly easy to get carried away with those subjects, even more so on the internet, and they aren’t the point of why I write. But it isn’t a secret that our medical system is deeply corrupt, and has been for far too long. I know that there are many people fighting to change it, and I’m aware change takes a long time. But until that change comes, many of us are suffering. Millions of people fall between the cracks. And I’m one of them.

Every day I’m terrified that my health will take a terrible turn that I cannot financially handle. Every day I wake to the disheartening fact that I can’t even get help for all the illnesses I already have, and it’s honestly depressing. As I fight for help as much as I’m able, I come across articles, reports, and personal experiences that scream louder than I can bare, “nobody cares about you because you are different, poor and sick.”

I don’t know what I am going to do to make my situation better and some days it seems there simply is no light at the end of my very dark tunnel. Others in my situation have every right to be angry, to scream and to cry. If you’re out there in the ether, reading this to distract yourself from the fact that your life is heavier than you can handle, know this, My darling friends- I care.

I’m not a politician. I’m not a millionaire and I don’t have any influence on our fucked up medical system. I’m just one girl writing a blog about the ridiculously hard game that is my life. I’m strange and I’m sick and I am far from perfect or influential. But I want you to know that when no one else cares, I do. I wish I could do more than just care and pour my heart out into the ones and zeros that make up the internet; and hey, it’s extremely possible that one day I’ll figure out a way to do more. I’d love nothing more than to make a real and permanent difference.

But for now, I’m just one of the millions of people that suffer and hurt, and feel as if they’re being punished for the illnesses we never had a say in receiving. I can’t lie and tell you that I’m not scared or that I have a perfect plan to get out of the deep blackness I’m currently in.

But I hope you know that if you’re in a different but equally awful blackness, you aren’t alone. For every meltdown I have I know there are probably millions of people having them too for similar reasons. It doesn’t make anything better at all; but I hope in the darkness, if there is a light, it’s your computer screen with a tab open to this silly little video game health blog, telling you that I can’t do much, but I do care.

I’ve seen all the mountains,
Yes, I’ve seen all the trees,
I’ve seen all the water,
But nowhere compares to home.

Home, let’s go home.

Home, let’s go home.

~Let’s Go Home – Best Coast

Eleanore Vs. Wanting It All

Dear sentient creatures made up of many wonderful things,

Last night I went out to my friend Nat’s birthday dinner and it was fabulous in every possible way. I met so many lovely people and had interesting conversations. It wasn’t until I was on my journey back home, staring into the clear night sky striped with lightning, that I realized my incredible friend Nat did something for me that no one had before.

As adulty adults, it is common in a social situation to ask a person you haven’t met before, “what do you do?” Personally, I’ve always abhorred this question, but I understand that it is used as a way to giant penguin the situation (break the ice) and find something to converse about. I was asked this several times last night, to which I responded, “I’m a receptionist.” The third time I was asked Nat heard it, and before I finished my mundane reply, Nat said loudly, “she’s a writer!” The people I was talking to seemed to be excited by Nat’s declaration, and we ended up talking about my writing. I was thrilled, passionately spouting about my writing and my intention to have it at some point engulf my entire life.

As Aaron, Charlotte, and I drove home, I was hit with the realization that I had never, ever been introduced as a writer. Nat doing so not only sent fireworks into my mind and heart, but it also made me feel so much like myself.  I was especially thankful that I was not introduced at this dinner party like I have been at too many others; the girl who cannot eat anything in the entire restaurant because she’s “allergic to everything” so don’t touch her because she’ll most likely die.

This morning I couldn’t stop replaying this moment in my head. It had my mind spiraling and calculating and imagining, and all of that eventually lead me to one of humanity’s greatest questions: Can a person truly “have it all?”

Growing up in a close-minded family I was taught what far too many others were. You must choose one path in your life and it must be reasonable. If you change your mind or have multiple paths, then you’re deemed inconsistent, unreliable and have no idea what you are doing. And of course, if you don’t have a degree by the time you’re 30, you’re a complete and total failure. There isn’t much wiggle room with that line of thinking, and if you know me at all that’s a big problem, because I’m an extremely wiggly person.

For three-fourths of my life I truly wanted nothing more than to be an actress. But I also loved visual arts. I also loved writing. I also loved music. I also loved all kinds of other subjects…and I wanted to pursue them all. I was constantly reminded that I was not being realistic and that my head was perpetually “stuck in the clouds,” causing me to be an utterly hopeless human being in the eyes of my relatives. Through all of the awfulness, my grandmother’s soft voice occasionally broke through. She instead would tell me, “why don’t you do something with you talent?”

The general consensus of humanity tends to be, “choose one route and stick to it for 60 years until you die.” Those who diverge from the paths they first chose or have multiple ones are seen as unique and brave, and we are told by the media, our parents, and most people around us that the rest of us just aren’t that fantastic.  I can’t tell you how many times I’ve told strangers I was communications major or a music major and was met with an awkward and flat, “so…what do you do with that?” As if I just admitted to them that I had a full length tail hiding underneath my skirt.

I still delve into a each of my passions and  I really have no reason not to. I can totally be a painting, gaming, cooking, fashion loving, musician writer and it should be completely acceptable. Having multiple paths in my life by no means prove that I’m indecisive, confused, or messy. If anything, it should show the world that I am passionate about life as a whole, and that I am trying to get as much out of it as possible. I’m not the only one, either. There are countless people of note who prove that having one path isn’t the only way to live a human life.

One of my favorite humans in all the land, the Vlogger Olan Rogers, now also works in animating, stand-up, filmmaking and opened a Soda Parlor in Memphis that is also a small arcade.

Audrey Hepburn was known for her astounding beauty and the films she starred in. She was also a goodwill ambassador for UNICEF and traveled in order to help suffering countries with food, clean water and immunizations. Four months before she died, she traveled to Somalia.

Harrison ford was both a space cowboy who fought against the Empire and the world’s greatest archeologist who could get out of any situation except snakes…well, okay. Maybe that’s not the best example. But you get my point.

Not only is having multiple paths in life awesome because you constantly learn about whatever you are involved with, but you also begin to learn about yourself. Sometimes learning about yourself can be frightening, as it’s possible to discover that the path you thought you were destined for isn’t all you hoped. At that point, you must make a choice. Do you stick with what you are no longer passionate about simply because it may pay well or because you put a great deal of work into it and don’t want to feel like you failed, or do you scrap it and start over somewhere else?

As my life carries on I have discovered on many accounts that something I was hoping to be my life’s work was something that I couldn’t tolerate. I wanted to be an actress for 18 years until I became more sick and realized I could no long meet the demands of the job. I wanted to be a bridal consultant until I realized I couldn’t relate to the inside world of fashion, and was better off adoring it from a distance. I wanted to be an interior designer until I realized the job was very mathematical where I was not (sorry Finn and Jake). When  I was extremely little, I wanted to be a newscaster, until I realized that my heart was way too squishy to deliver news about various tragedies each morning. I was disappointed when I realized that these jobs weren’t for me, but I don’t think I failed at them. I simply didn’t fit, and that’s alright.

The failures and successes in our life are equally important. Both help us uncover a few more puzzle pieces that we can click together, leading us to understand who we are and what our lives are all about. The click doesn’t always come easily or painlessly, but it does happen. While it is much easier to have one solid path that you never doubt, having multiple doesn’t make a person any less put together or any less intelligent.

Of course, being stretched too thin is always an issue. I’m slightly frustrated every single day because I cannot fit everything I want to do into 24 hours, yet the days I do manage it I end up dead exhausted, especially considering the whole chronically ill thing. I am also starting to comprehend that patience is even more valuable than we were taught as children; patience is everything. It’s how people are able to create astonishing pieces of human history. Through all the hard work, successes, path changes and failures, patience makes us resilient.

So back to the main question. Can a person really “have it all?” Well, to be honest, after writing 1372 words on the subject (now 1377), I still haven’t the slightest idea. Life usually calls for a great deal of sacrifice, and we eventually have to decide what we are willing to sacrifice and what we are not. Those decisions include a good amount of heartache sometimes. We may not be able to have it all;  but what we end up with may be better than what we hoped for in the beginning of our adventure.

I’d like nothing more than to continue to be a gaming, cooking, fashion loving, musician artist writer. So far, most of those titles are slowly being smooshed into one shorter title: Blogger and Vlogger, as both of those incorporate every one of my passions.

That’s still a bit of a mouthful though. So for now, I think I’ll just stick with my official title on my Facebook page: Alien Stardust Princess, Creator of SicklyStardust. That just rolls off the tongue, don’t you think?

The summers gone, the years have passed,
My friends have changed, a few did last.
The smallest dreams got pushed aside,
The largest ones that changed my life.
And all I wish for has come to pass,
From Rock N Roll, to love and cash.
It’s all success if it’s what you need,
Do what you like and do it honestly.

If I had a chance for another try,
I wouldn’t change a thing,
It’s made me all of who I am inside.
And if I could thank god,
That I am here, and that I am alive.
And everyday I wake,
I tell myself a little harmless lie,
The whole wide world is mine.

~Rite of Spring – Angels and Airwaves 

Eleanore Vs. The Hardest Things

Dear readers, friends and all of the above,

The other day I posted a saddening and difficult post regarding my constant fears about my health. Teary eyed I clicked out my words on my laptop, and upon proofreading aloud my teary eyes became broken dams as I crumbled under the immense pressure a life such as mine keeps a person under.

And then, because the last year I have been on a journey of self discovery and transparency, I posted it to my personal Facebook for all my friends to read. And within minutes, I was consumed by guilt.

In fact, just about any time I post something that isn’t starry eyed or laugh inducing I feel guilty. I feel like a “downer” or like I am adding more sadness and pain into the world by expressing myself as I do.

When I started this blog it was purely an outlet and I didn’t think anyone at all would read it. But in a wonderful turn of events, people did. And some people even told me that by laying my heart bare and posting my most fragile emotions and thoughts, I was actually touching their hearts and making them feel less alone. I honestly can’t describe to you, my darling reader, how spectacular it feels to be told such things.

I love writing. I love being my true, unadulterated self and I love talking to the people I’ve met through this adventure I started somewhat accidentally. But I made a deal with myself a year ago that I simply could not take suppression any longer. My family, boyfriends, friends and even strangers have shut me up my entire life. I’ve been overwritten, screamed at, interrupted, one-upped and ignored more times in my life than a person ever should have to experience.

I constantly have flashes of my family members screaming at me that I had no right to speak or that I was worthless, and that no one cared what I thought.

I remember a dinner party when I was 20 where I met a stranger and got into a conversation about how incredible and strange the universe truly was. He seemed to be at least minorly interested until my at the time best friend shouted at me, “are you getting deep already? You are such a downer, boo!” Everyone at the dinner laughed at me. I didn’t speak the rest of the night.

I have countless memories such as these. Regardless of how long ago they occured they still cause my heart to ache. After 25 years of being shut down and treated like less than a person, being robbed of my voice in far too many social situations, I finally cracked. I became more talkative, tried harder to be as articulate as possible, and became brutally blunt. Of course I try to not be hurtful, but slowly I’m learning that my voice is just as important as anyone else’s.

Many of the subjects I talk about are not easy to speak about or to hear about, and believe me, I am fully aware of that. But as I’m sure I’ve said before, often times the most difficult things to talk about are the most dire ones. People get very uncomfortable when conversing about illness, disability, sickness, and everything within those realms. But I believe that their discomfort comes from the very fact that we as a society have made it uncomfortable; and to me, a person whose entire life revolves around their health, that’s just ridiculous.

We need to talk about the hardest things. About illness and disability and race and gender and everything else that affects a human life. For people who aren’t affected by those subjects it’s incredibly easy to cast it all out and call it innapropriate, strange or even dangerous. But there are so, so many people on the other side, and they are just as important.

Why are we so scared to be wrong, to be ignorant, or to be uninformed? No one knows everything- that’s literally impossible. And since everyone is ignorant about many things, why are we so reluctant to learn more? We love dramatic movies and television riddled with difficult choices yet when someone we love faces them in reality they hear more often than not, “I’m sorry, but I just don’t know what to say,” or even worse, they hear nothing at all.

Life is far from easy for the majority of people, and while it’s common to pretend that it is, especially on social media, I simply refuse to do so. My hardest days are equally important as my brightest ones because all of them contribute to who I am as a whole person. And I nor anyone else should not feel guilty for sharing one or the other, whether it is an attempt to ask for support, to bring awareness to a situation that doesn’t have enough light shined on it, or even if it is a mix of both of those plus a whole bunch of reasons that they aren’t totally sure of. That’s usually what it is for me.

Life is strange in all its complexity, negative and positive. Ignoring either side gets us nowhere at all. If I were to say, “I won’t talk about this subject because it is too much vulnerability for me to handle, but I’m sure someone else will eventually,” I’m joining a vast group of others thinking the exact. Same. Thing. If everyone assumes “someone else” will take care of it, who will finally speak up?

I know my life isn’t like most people’s my age. It isn’t like most people’s period, really. I understand that I puzzle people and sometimes even puzzle doctors. Many times even my closest friends haven’t the slightest idea what to say to me, and to be honest, it certainly hurts. But I hope that as I continue to spill my heart out into a screen, it will attract more people like me who are aching as I am. We may suffer, but it does not have to be alone. And for those who aren’t like me, they can at the very least be encouraged to be curious, compassionate and empathetic. Everyone is better off when we have the courage to speak and to listen.

My pain is who I am. My joy is who I am. I apologize for none of it. (Well okay, I do currently, but I’m slowly learning not to).

I have shared this quote before and I will probably do so a thousand times more as it is incredibly dear to me:

The way I see it, every life is a pile of good things and bad things. The good things don’t always soften the bad things, but vice versa, the bad things don’t always spoil the good things or make them unimportant.

~Doctor Who

Eleanore Vs. Karma and The Whys

Dear lovely humans who are probably less lumpy than I,

This morning I began to write this post and in a turn of brutal irony had to stop because I had to go to the emergency room…again. Thankfully this was my shortest visit I’ve ever had. Normally they last anywhere from 10 to 30 hours. I was there for only two, which was absolutely fantastic. What was less fantastic was the reason I went. While it’s somewhat unclear, I may have had an allergic reaction to my new anxiety medication, Lexapro (I wrote a whole post about how afraid I was of this very thing happening to me. You can about that here). I was so happy because after a few days of it making me tired, dizzy and nauseated each night, I finally started to adjust to it and I thought it was starting to help. That is, until I woke up with large lumps on my legs and a slightly swelling face. I was given a shot in my hip of an insane amount of Benadryl and was sent home to hibernate like the depressed, lumpy little bear I am.

Before this mini clusterfuck began, I was inspired to write this post by one thought that crosses my mind almost daily. While the exact wording often changes, it always has the same general idea behind it. “Did I do something to deserve my pain and sickness? Why couldn’t I just be like everyone else? Is this my fault?”

There’s two parts of this thought that need to be dissected, so put on some goggles and a lab coat, because we’re about to get messy! (Not really…I’ve just always wanted to say that).

Karma

Far too often those who are chronically ill try to understand why we were made the way we are. It’s a mystery as to why we must endure pain, sickness, hospitalizations, surgeries, ambulance rides and all the other severely unpleasant events that we go through as chronically ill people. Of course, the easiest way to understand “the why” is to assume that obviously, we did something terrible and this is our punishment. People are especially fond of the idea of Karma, the idea of “what comes around, goes around.” If you do something awful, something awful will come back to you.

The problem with this is basically everything. All too often the idea of Karma, especially by Westerners, is sorely misunderstood. Most people believe that this trade off is immediate; for example, a car cuts you off on the road, then gets cut off by someone else. That’s obviously Karma, right? Not really. In fact, if you Google Karma, the first thing you see is this:

Karma

As you can see, the magic Google machine tells us that Karma is the sum of our actions that will effect our future existences. I am starting to constantly remind myself that while I am a firm believer that people in this current existence are absolutely impacted by the positivity or negativity they put into their lives, the fact I did some shitty things as a child does not mean that I deserve to be sick now.  It’s incredibly unfair and illogical of myself and others to blame me for my illnesses. My family frequently blamed me for everything I deal with, called me a burden, or even worse, thought I was faking everything.  Not only do I think that no one deserves to go through what I do, (even people who I think are especially awful), but believing my illness is some sort of energetic punishment does nothing for my health.

If anything, it only worsens my depression and anxiety, makes me despise being sick even more, and worst of all, plants the seed in my head that maybe, just maybe, if I’m an extra good girl, I’ll magically be cured of my illness. Regardless of how good of a person I am, I am always going to have my illnesses, not because I’m deserving, but because I have them and they are incurable. Furthermore, people should never, ever be kind or good in order to receive a reward, whether they think that reward is admittance into heaven, the cure to their illness, or whatever else they desire most. People should be good because doing morally good things and helping other people is simply the right thing to do.

The Why

So now that we’ve discerned it isn’t Karma making chronically ill people and I sick, we’re left with the basis of the question, “why?” If it isn’t Karma, there must be some other reason. If there’s one thing I want more than being well, it’s to at least have answers. If I’m going to suffer, there better be a good fucking reason for it.

Unfortunately, there just isn’t. Since I was a child I’ve been craving an explanation; some way to make sense of the fact that my life has been mostly pain and struggle from the very start. Not only with my illnesses, but with my family, my friends, boyfriends, money- pretty much every part of my life is dysfunctional. I’m often discouraged by the fact that while I seem to to be working a hundred times harder than others around me, I’m only half as far. It makes my heart sink feeling like no matter how hard I fight I get nowhere, or only move an inch while those around me are light years ahead.

If anything, I might be able to blame part of my struggles on my abusive parents, and I can attribute much of my illness to a rotten mix of genes. But even after that, there is still so much left unexplained, and the truth is I may never have my answers. Regardless if you are religious or not, spiritual, scientific, or not sure where you are or what you believe in, no one has these answers. Some people may think they know the answers, but their opinions, no matter how hard they defend them or however loud they scream them, are still just that; opinions.

One thing I am 100% sure of is that regardless of who you are or what your diseases are, your illnesses are not your fault. Let me say it louder for the whole fucking universe to hear:

YOUR ILLNESSES ARE NOT YOUR FAULT.

While of course we should be as proactive and do what we can to live the best way possible with our conditions, we are only given so much control over our bodies. I check my blood pressure obsessively, drink tons of water, eat as much salt as I can, and do everything else that doctors tell me to do in order to control my hypotension. However, even with all that I put into action, I’m still going to pass out when my blood pressure gets too low, because I don’t always have a say in what my body does.

The best thing we can do as people who are chronically ill is control what we are able to to the best of our ability, and let go what we cannot. I tell people who aren’t sick how frustrating it is to not be able to trust my own brain and body sometimes, because again, I don’t have much control over most of my illnesses. Most people don’t understand what that’s like, and I certainly don’t wish illness on any healthy person, but it is absolutely true that to some degree I am at the mercy of my illnesses. If I try to control more than I actually can, I will be driven insane and become more unwell. We have to let go what we cannot control. Easier said than done, of course, but most facts of life are kind of ridiculous that way. We must stop blaming ourselves for the fact that we never got a say as to how our health turned out.

I can’t speak for the past life Eleanores (or is it Eleanori?), but this current one is trying to make the best of her life, even will all 15 of her diagnoses and even with every bullshit struggle that comes speeding her way. She also doesn’t like writing in third person very much, but she found it necessary just this once.

Now you wait for something to cure this,
Well I’m here, under your downpour.
It’s not your fault so please stop your crying now.

~It’s Not Your Fault – New Found Glory

 

 

Eleanore Vs. Anxiety Drugs That Give her Anxiety (and Some Other Stuff)

Dear little planets with little people,

A while ago I said that there has been a turn in my health that I wasn’t quite ready to explain. Well, if the suspense has been killing you (as I’m sure it hasn’t) ache no longer.

As many know I suffer from Depression, Generalized Anxiety Disorder and PTSD. That’s quite a bit for one little brain to take. For the most part, my mental health has always taken a back seat due to the 12 physical diagnoses that I already combat. However, I have battled the mental ailments as well, unaware that the whole time I was losing and only getting worse.

I grew up in a very abusive home and therefore was unable to fully express myself or to ask for help, because every time I did, it lead to screaming, punishment, and ultimately my regret. The few times I was so overwhelmed that I could not hide my panic attacks or stop them from taking me over entirely, I was met with threats of having my family call the police on me or being screamed at to “shut up.” It was far from pleasant, and I more often than not would just run away from home to cry either in a parking lot, while driving aimlessly, or at a friend’s house.

Now that I am living in a far safer environment I thought for certain my mental conditions would improve immensely. I was terribly wrong. As it turns out, suppressing them for 25 years was not exactly healthy. Surprise! After many horrible and dramatic long distance fights with my family, having my grandfather pass away and my physical health declining much to my dismay, I erupted. My panic, anxiety, chest pains have all worsened as my composure has fallen away to reveal a very unwell and scared girl.

This is a very large part of why I cannot handle making videos anymore, at least for the time being, though I desperately want to get back to it. It’s also half of why I ended up in the ER two weekends ago. Every little activity lately is terribly stressful, whether it is working at my fairly simple job or just trying to not freak out from the pangs in my chest that come and go. I am altogether overwhelmed with panic and it is terrifying. While I have been like this most of my life, I have also been very talented at putting up a fairly normal front. But now, because I simply no longer have the ability or energy, I cannot.

I’ve been feeling more sick. I’ve been crying and breaking down at work. I constantly feel hopeless and more close to an out of order robot rather than a human.

BUT. THERE IS GOOD NEWS!…Kinda.

After one of my last especially horrific breakdowns I ended up being put into contact with a behavioral health center at one of the hospitals here in St. Louis that doesn’t require insurance. I cannot tell you how incredibly grateful I am to have accidentally found this place. After an extensive assessment I was admitted into the program. Now I have a psychiatrist and a social worker. For the first time in my life, I have real mental help, and it finally has given me some hope that though I am very sick right now I most certainly will not be forever.

Just yesterday I was given my very first long term anxiety medication called Lexipro. It’s a tiny little white pill, but in my experience, the tiniest pills are the most intense. Aside from the anxiety I have regarding just about everything, I have also had negative experiences with all kinds of drugs. I’ve been given quite a few strange medications in my life for various different issues, and while some have benefited me greatly, others have made me hallucinate, break out in blisters, temporarily lose control of my hands and so on. These side affects aren’t charming to say the least.

Sooooooooo hopefully it isn’t surprising that yesterday as I sat on my couch with the tiny white pill in my hand, I was having major anxiety issues about whether I really wanted to take it or not. That’s right, my anxiety pill gave me anxiety. Talk about ironic. My boyfriend, who despite sincerely trying to help doesn’t, tried to reason with me by saying, “If a doctor prescribed it to you it’s safe.” Oh, if only that were true. While we’d like to think doctors are capable of always prescribing the perfect remedies for every issue, they don’t, and it’s not always their fault. There’s no possible way to figure out how every person will react to every drug or treatment, and unfortunately, the best treatments are generally discovered by trial and error. If anything, I was at least thankful that my psych told me to contact him if the drug makes me feel unwell. So far, it mostly makes me feel sleepy and nauseous. My brain is still spinning out of control, and everything feels scary and big, but hopefully with time and a tremendous deal of help, I’ll be on track to getting better.

As the psychiatrist gets to know me better, he also has to unwrap the clusterfuck that is my family history. While we haven’t talked about it much yet, I have been thinking about it a great deal, and I’ve come to the conclusion that I’m about 90% sure my grandmother also has severe anxiety disorder and depression. Considering she too was abused, suffered through events I cannot comprehend and lived through World War II which tore apart her country, that isn’t shocking. What is shocking is that unlike me, she was never expressive about how she felt, aside from the fact that she was constantly overcome with worry about everything and anything. Back then, I assumed she was just a worrier as most grandmothers are. Now, as I dive into my defunct family tree, I realize that she did not just worry as a grandmother; she had the same illnesses plaguing her mind as I do now, and was never able to get help. Now, at 92 years old and suffering from Alzheimer’s, she is living in a home and finally getting the proper attention she has needed long before her Alzheimer’s ever set in, and I’m at least thankful for that.

The fact that my grandmother has lived 92 years with a mind similar to my own has left me awestruck. 26 years in my opinion is long enough to drive anyone insane when living with severe depression and anxiety without proper care. I’m even more astounded when I remember that her brother committed suicide in his 60’s, and we can almost be sure he suffered from these illnesses as well since there is more evidence coming to surface about the fact that depression and anxiety disorders can be genetically linked.

The fact that I no longer have health insurance or a way to get it is one major subject fueling my constant fear. However my social worker is actively searching to find alternate ways of getting help, because while it’s wonderful that I am now receiving mental health help, I’m still in dire need of physical help. But one thing at a time, right?

Lastly and slightly off topic,  I would like to note that I just watched The Little Prince on Netflix and it was absolutely beautiful and delightful in every way. I was enamored with it from the start and remained so through the whole thing. It’s enchanting, sweet, meaningful and magical, so if you like beautiful movies, it is surely one to watch.

the-little-prince-quote.jpg

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)