Eleanore Vs. Too Much and Never Enough

Dearest little snowflakes,

I’ve been under house arrest! Well, sort of. Between all of Missouri being in Icepocalypse (the news came up with the name, not me. Dramatic much?) and the virus that I still have not been able to beat, I have done a whole lot of nothing. In many ways this is good, as I am a chronically ill and disabled person who is usually not allowed to care for myself as I am busy keeping my life from turning into a supernova. The storm and my virus have both forced me into a state of self care, which my body appreciates, though I am quickly becoming restless.

Restlessness for me often leads to introspection…and a lack of sleep. So, this morning around 4a.m I found the last appointment I had with my psychiatrist on shuffle in my brain. I went to visit him Thursday and I caught him up on my life, which is tasking since I only see him once a month. I explained with enthusiasm my plans to set off on the next adventure in my life which includes taking a leap of faith. As my words flew out of me like fireworks, he listened intently before finally saying, “I can’t help but think as excited as you are, there’s fear behind your words, too.” What is he, like a psychiatrist or something? He was completely right.

Acknowledging fear for me has always been easy. The dissection of it is what I find intimidating. As the conversation descended into my past, I was overcome with memories which naturally set my PTSD into action. Growing up, my mother made sure that every emotion expressed was negated. If I was upset, angry, saddened or in pain she would tell me I was overreacting, a bitch, selfish, worthless…you get the idea. I look back on crying in my bed from the pain caused by my many illnesses; she would blast open my door furiously, ask me what was wrong, then scream at me to stop crying. The only thing she did worse than this was never coming to check on me at all after hearing my calls and screams, which happened more as I got older.

My suffering as a teenager was only ever relieved by my beautiful older sister, who we’ll call Sissy. Often after my mother would scream at me, Sissy would gently knock on my door. I’d be laying in my bed, my spine and legs engulfed in horrific pain, barely able to breathe without screaming. She would be so compassionate towards me, a rarity in our household, and would either hold my hand or rub my back while I cried myself to sleep. The severe pain would cause nausea to the point where I was unable to eat anything, so my sister would make home made chicken soup while I rested. She would bring me food in bed because I was unable to walk. Her affection towards me was my silver lining in a life full of constant nightmare that she too was living. After all, Sissy was only five years older than I living in the same dreadful home.

It wasn’t until last year that my sister told me on days like these, my mother would go to her and tell her, “go deal with your sister.” Despite being endlessly appreciative of my sister’s kindness during some of the most painful days of my life, my heart breaks thinking that my mother had to pawn off my care onto my sister because she was just that inept at being a mother.

The discussion with my psychiatrist carried on and I realized that my mother did not only stifle the negative emotions I expressed, but the positive ones as well. Whenever I felt accomplished, I was told I that I was too thrilled about what I had done. When I was happy, I was told no one particularly cared that I was, and that expressing my happiness was selfish. When I was excited, I was told, “it’s not that big of a deal.” By the end of my appointment I was reduced to tears and bullets of memories were piercing through me. I felt shaken, terrified by the worst memories we spoke of (which I will not write about as to not trigger myself) and on the verge of a panic attack.I was disheartened because I was sickened by my own life.

Wiggling about my bed in the early morning, replaying all of this in my head lead me to one conclusion; for all the time I have been alive I have always been seen by others as either too much or never enough. I’m either too deep or too silly, too excited or too worried. I’m never good enough, pretty enough or healthy enough. If I’m elated I’m manic and if I’m saddened I’m depressing. Through it all I have come to a conclusion:

I AM SO EXTREMELY TIRED OF BEING TOO MUCH AND NEVER ENOUGH. 

It is no secret that I am hyperaware of my flaws, but now I am beginning to understand that while it is true that I am chronically ill and altogether imperfect, I’m not the only problem. Some in my life kept me feeling inadequate in order to keep me on their leashes,  while others I have loved intended to keep me weak and therefore easily abused while remaining attached to them for fear I’d be unable to survive on my own. I’m only now understanding that they were not healthy people to have in my life and as I grow I fight to rip myself away from them, even when it is the most painful.

I have been minimized, gaslighted, and hurt endlessly by people I lent my trust to, only to have it exploited. There is so much wrong with me and I fully admit it; but what makes me more than my faults is that I not only admit it, but I fight to care and strengthen what is wrong with me to the best of my ability, so that rather than being a part of my pain, my pain is a part of me. That makes all the difference, as I am only now starting to learn.

I may be chronically ill and damaged from the abused life I had no choice but to make my way through; but I work to take all my damage and pain and create something truly wondrous out of it. That is what I feel my purpose is, and for the first time, I feel that I actually do have a purpose. That’s a big deal for someone being told they were worthless from the very start. I am hoping that with more time, help and support from those I love now, I will believe more and more that I am just the right amount of everything that makes me myself. After all, I never want to be less than myself. Why should I be?

For all the people who have been told they’re too much or never enough, I hope you make your way to self love and understanding, too. I’m just starting this journey, but I hope one day we can assure ourselves that we are good enough as our hearts swell with love and pride.

To read more about my experiences living with Post Traumatic Stress Disorder, Click the blue right here! 

P.S – If you’ve seen the film Howl’s Moving Castle, you understand why I made it the feature image. If not, you should definitely drop all your obligations for the day and watch it right now. OR read more of my posts. Or both!

We are all that we are; so terribly sorry.

~Angels and Airwaves – The Moon-Atomic

 

Eleanore and the Magic Ring Vs. Everything

Dear dancing phalanges (if you don’t understand that reference, click here, you’ll be glad you did),

After much struggle, I finally found a counselor to help me and I am so thankful for her. We have been working on my mental health and though it has only been a month I am already feeling small differences. My counselor, Erin, is smart and compassionate, exactly what a counselor should be. Surprisingly, she’s a psychology student, but despite her still being in school she’s better than most of the counselors I’ve ever had. I am fortunate she was assigned to me.

During my last few appointments we have been discussing one of the problems I have that I really hate talking about, for fear that people will think I’m either crazy or lying. Or both. After speaking with her and realizing that this is surprisingly not just me, I’ve decided to come out about it, so it’s super transparent Eleanore time. Aside from having PTSD, Anxiety Disorder and depression, I have struggled with disassociation for as long as I can remember. I understand that this makes very little sense. Allow me to remedy that.

There is a disorder called Dissociative Identity Disorder, known more commonly as multiple personality disorder. This is not the illness I suffer from. What I do suffer from is dissociation between my soul and my body; at least, that’s the easiest way to explain it. It makes me feel as if my soul and body are separated, my soul happily floating in the atmosphere while my body hops about the Earth. When I was younger, I used to imagine my soul swimming about the galaxies, an airy and carefree version of myself tethered to me by only a thin string of stars. I explained this to a few people, all of which thought I was being imaginative at best and strange at worst. So, I stopped talking about it while continuing to living feeling as if I was not a whole person.

My dissociation also affects my senses. When I touch certain items it seems as if I can’t completely feel them. I’m only feeling 50% of what is really there. Extremely smooth materials such as tiles, satin, and leather bother me because not only do their textures make me uncomfortable, but it also seems I can’t get much sensation from them. Things that are textured such as stone, carpets, and beardy faces, however, are my favorite things because since they are a bit more rough, I can sense them more. If you have a beard, beware, because I will try to touch it. I’ll ask permission first of course, I’m not a weirdo, but I will work to be as convincing as possible that I should be allowed to do so. #sorrynotsorry.

When I was first diagnosed with Celiac Disease I struggled with numbness and tingling in my hands. I had found out that nerve damage was often associated with Celiac Disease and was worried that my hands would go numb forever. However, as I received more care the numbness improved, and while my hands still shake and hurt many days, I’ve never been diagnosed with any nerve issues in my hands. While this was somewhat of a relief, it also made me frustrated as I could not figure out while I often felt like I couldn’t sense half the world.

Several counselors I have had before would mention disassociation here and there, but would never think much of it. Until I saw Erin, it became a fact of my life. I was doomed to feel disconnected from my soul, from my world, unable to feel all that I wanted to. Somedays it is worse and some days it is better, but it never fully goes away, and with my attitude, it never would. As I became more comfortable with Erin we began to dissect my disassociation, and to my relief she helped me to discover that this problem is actually symptomatic of PTSD. She explained that it was as if my whole being was attempting to protect me from experiencing more pain than I’ve already had to deal with. This made everything worse because my lack of senses depresses me, which in turn makes my disassociation worse, which makes me more numb. After we contemplated my situation she gave me the idea to find something I can keep on me that is a texture I enjoy, so that when needed I can touch it and bring back my feeling.

Since finding a cute, beardy hipster guy to follow me around forever might be a little weird, I thought for quite a while what I would ideally have on me, and I settled on a ring. I’ve always liked rings, and it would be something easily carried while remaining inconspicuous. The material that popped into my mind was Marcasite, a type of pyrite stone. When my siblings and I were younglings, all three of us had rock collections. My sister had a beautiful, dark piece of pyrite that I was always quite jealous of. Thinking about it now, I liked it so much because of its texture; rough enough to allow me to feel while not being painful or uncomfortable. Marcasite is used to make jewelry that often looks like this:

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It’s the perfect texture and I would get a ring such as this but the whole being poor as balls things means that I can’t afford a damn thing. I felt particularly frustrated until I realized that I had an entire box of beads and everything I needed to make a ring myself. So, I broke out the beads and made my disassociation ring. It looks like this.

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I’ve ended up absolutely loving it. As soon as I put it on my finger, I began to play with it, and I have been doing so ever since. While I hope that I can get a marcasite one eventually, for now, the little black beads hanging out on my finger are a lovely start. It’s comforting for my anxiety and my dissociation, and while this is a very tiny step thanks to a very tiny ring, I’m hoping that it’s the first of many on my way to being healthier mentally and physically. The idea that my dissociation is something that can be treated and helped gives me so much hope. While I wish I could eventually knock off every single illness on my list, I realize that’s not entirely possible; but if I can remedy just a few and refrain from getting any others I’ll be more than satisfied.

Here’s to all of us being on the way up, and as always, a step closer to living the best versions of our lives despite that which deters us.

You have become what you have always been,
Life, figuring out, peripheral vision
No words we can speak, our paths have been chosen.
But all the trails that we trek, should lead us back to here.
Because our love comes again,
Just when I’ve broken down I found love can come again.
You gotta believe that love comes again,
Just when I’ve broken downI found love can come again.

 

 

 

 

Eleanore Vs. Maternal Chains

TW: Pregnancy, abuse, parental abuse

Dearest readers,

I am sometimes an unhealthily introspective person; I tend to obsess over thoughts that just get stuck in the subspace of my mind. Especially after the several big events that have happened recently, I’m now analyzing everything inside and outside of what it means to be Eleanore. Sometimes this brings me negative realizations and sometimes it brings positive ones, but usually each realization is a mix of both.

Today I was home alone and I was told to not to come into work. I got little tasks done around my home and played my bass a bit, but the whole time I was in deep thought about my current predicament of being mostly defeated, broke, and unsure of what’s to come. It was all quite overwhelming and saddening, and then I was bitch slapped by a memory that changed everything, at least for the moment.

My mother had an odd habit of suddenly breaking out in exceptionally out of place comments which were often cruel and hurtful. When I first became “official” with my first love, I was just about to walk out the door to go to school one morning when she felt it pertinent to blurt out, “you know if you were to get pregnant right now, you’d almost definitely miscarry, right?” I was crushed for the rest of the day, sobbing to my sister on the phone on the way to my first class. These interactions also bashed the wind right out of me, but never stopped coming.

Back home, in a strange land called California, there was a store called “The Starving Musician.” My mother and I used to pass it while we ran errands around the city. We were sitting quietly in the car when out of nowhere she told me, “you know, you can’t do that whole ‘starving musician’ thing. You’re too sick. You’d never make it.” This was only a few months after I started to my play bass guitar. I’m not sure what she intended for this comment to do to me, but I mostly found it jarring and insulting. I was only 13 at the time, and I couldn’t understand precisely why, but I felt the cut of her words deeply.

As I got older I realized that she was a very strange abuser in the sense that she would constantly complain about what a burden I was and would make me feel as unwanted as possible, while also working hard to make me believe I couldn’t possibly survive without her. She taught my sister and I that the world was a scary, dark, and dangerous place, that no one was to be trusted, that we were burdensome and worthless, and that without relying on her or being just like her, we would never get anywhere. As I have grown and have ventured outside the black veil my mother kept me hidden under, I realized just how very wrong she was.

There were so many times in my life when my mother would have violent fits and would tear me down any way she could because I made a decision without her consent. Even after I was able to drive myself, she was furious any time I even went to the hospital without her for regular appointments. She had the same reactions to me house sitting, going to see my friends, and pretty much anything else I would take part in. I was hopeful that this attitude would stop when I had moved away to Missouri; unfortunately she only became more verbally abusive and controlling.

For the last five months I have had no health insurance because I turned 26 in July and was therefore removed from my mother’s insurance. Soon after, she called me, explaining that because I was chronically ill, her work wanted to help me get extended coverage. I thought about it for a few days, and while the prospect of health insurance was wonderful, the thought of still giving her something to use as a chain around my throat sickened me. Every time she threatened to take my health insurance away for one reason or another haunted my mind. It was a difficult decision, but I ended up deciding that I would rather have no health insurance and finally break the chain that kept me under the clutches of my mother than have proper medical care while being chronically ill. When I am looking at my medical bills or am in a hospital bed I often relive the deciding moment; yet every time, I arrive at the conclusion that between two dreadful options, I chose the less harmful.

Currently my life is a mess, and I would be lying if I said I wasn’t completely terrified. However, I am often relieved that while I have to face that terror a hundred times every day, I don’t have to deal with it being layered with threats, abuse, hatefulness and unrealistic fear. As I’ve grown from child, to teenager, to a fully adulty adult woman, I’ve realized that most of the lessons I was taught as a child were horribly wrong and that they were actually not lessons at all. They were only chains used to keep me tied tightly to my abuser.

My life may be overwhelming, I may be chronically ill and have very little. Yet after 26 years I have finally started ripping apart the chains that my mother worked so tirelessly to keep me down with. I have discovered so much in my life, I have met so many beautiful people, and have been braver than I ever thought I could be in spite of every toxic seed she planted in my mind. While I often feel I haven’t got much to be proud of, I certainly have that.

I do not know what is next for me, but whatever it is, I promise to myself that I will be brave and adventurous. I will also mostly likely be anxious and scared, but  I promise that my fear will not stifle me. After 26 years of being raised in a world full of doubting and darkness, I am slowly but surely discovering what I’m really capable of.  I can’t do everything I’d like to, but I can still do spectacular and wonderful things.

I can live, I can thrive, I can create. I can break the chains placed around me at my birth. I have already started to.

I can, I can, I can.

It was a strange place and a tender age; I was just a babe in school,
Saw them roll their eyes at me every time that I thought that I was cool.
Well God knows I was no chosen one that just wasn’t my prime,
Yeah it’s just matter of time, honey, it’s just a matter of time.

~Work This Body – Walk the Moon (I’ve probably used this song before but it’s just SO good!)

A horse of a different color:  I am really struggling to survive right now. So, I am selling most of my things. Please consider purchasing (and convincing others) to help me pay for rent, gas, and my medical bills that are currently adding up to the height of Mt. Doom itself.

Click here to see jewelry.

Click here to see books.

Thank you for reading, from the bottom of my heart. 

Eleanore Vs. Fear Itself

TW: fear, death

Dear citizens of Halloween town,

The last few weeks have tested me. I think so far I’m getting a C on the test, but that’s probably because I’ve never been great at studying.

A few weeks ago I was talking my dearest friend Stan. We’ve known each other for exactly half my life, and in those thirteen years we have strongly influenced each other. I would be such a drastically different person if not for growing up with him. Our friendship has been one of the only consistently trustworthy things I’ve had in my life. To say I’m fortunate to have grown up with such a fantastic human being is an understatement; but I digress…because I could rant about how amazing he is for basically forever.  My point is, due to our closeness, he knows me better than anyone else. He can read my mind and can tell me what I need to hear. He can also tell me what I sometimes don’t want to hear, but need to hear for my own benefit.

As we talked I told him that  I never had so much anxiety about getting more sick or dying as I do this year. I’ve always had a fear of dying young, but this year more than ever, the fear has been constricting me every second and it weighs on my heart like a thousand tons of cement. It’s not easy to carry it around with me, especially considering I’ve had more than a few close calls that repeat in my mind. As I’ve said countless times before, my ultimate goal is to live a healthy, long and happy life. Especially at my work I see people every day who alter bodies in order to make others think they haven’t made it to an older age; but as someone who is young and has had to face the prospect of having my life cut short, growing old is all I’ve ever wanted.

I’ve explained this to a few select people and of course not many know what to say. At best I’m given sympathy, and at worst  I’m given shrugs and thick silence. While it is understandable this isn’t exactly a brunch table topic, I feel it is something those with chronic illness have to face; the uncertainty of the future and whether or not we’ll still be here for it.

As I spoke a little faster and more clumsily because my anxiety was beginning to knot my words into a frenzy, fear came pouring out of me. My eyes filled with tears and my stomach tightened as I released my darkest fear to the person who knows me best. After the emotional storm, he told me one simple sentence that had never, ever been spoken to me: “you don’t have the obligation to be scared.”

At fist this might not sound so fantastic. However he continued on to explain to me that those of us with chronic illness (including him by the way), feel that it is our obligation to be fearful. If we’re always scared, it feels like we’re doing everything that we can to prevent the worst from happening to us. It makes us feel responsible and like we can in some way save ourselves. Yet even with all the fear I’ve collected throughout my chronically ill life and all that I’ve done to prevent bad things from happening to me, they still have. They still have. 

Stan explained that if I were to strive for a calmness and acceptance that I’m doing everything I can already, and that maybe there isn’t more to be done, that I might be capable of releasing myself from my anxiety and constant fear. Especially because I was raised by a fear monger, it was pumped into me from the start of my existence that I must always, always fear. I must fear the known and unknown and everything in between, including my heath. Growing up, I thought this was all normal. As I grow older and discover life through my own eyes rather than the pair I was forced to look through, I’m finding that many of my lessons are being proven wrong.

A few weeks ago I wrote this post  (click the blue to read after!) in regards to the fact that it is difficult to deal with chronic pain because at a certain point the line between an emergency and your normal state of sickness is convoluted. The fogginess leads us to be fearful all the time, non-stop, because we’re never entirely sure what’s happening to us. While Stan’s epiphany has caused me a great deal of introspection, I still feel the same way. After all, I can’t change 26 years worth of fearing in three weeks.

While it makes us all very uncomfortable, the fact is that no matter how scared I am, no matter how I try to prevent negative experiences, they’re still going to happen. I can’t express enough how much I fucking despise the feeling of losing consciousness during one of my Vasovagal episodes. The truth is, regardless of how much I hate these episodes, while I do everything I can to promote my own wellness, they’re still going to happen sometimes, because there is a good deal that I’m just simply not in control of.

I’ve mentioned before that I’ve started to do Yoga on my better days and physically it is a terrific help. It’s also been somewhat helpful for my mental health too. In particular, I’ve become extremely fond of one mantra that I hear often during my practice. “I let go of that which I cannot control.” Ever so slowly, I’m learning the importance of this, especially in regards to my health. I must let go what I cannot control.

Of course this doesn’t mean one should not take any responsibility for themselves. If you’re a Celiac who doesn’t care about what they eat and then complain about your symptoms, I cannot have sympathy for you (and I am a Celiac). Those who are chronically ill have a responsibility to themselves to advocate as best they can. When you truly have done everything possible to be the best version of yourself despite your illnesses, you have a little less to fear, because you’re making the “things to be afraid of” list shrink a bit. It would be nice to obliterate it entirely, but I think even for the healthiest people, at certain points, being a human is a little bit frightening to do. Even more so when you put all your passion into it.

I’m not going to say everyone should stop being afraid. I’m not going to lie and say I’m magically cured of all my fear either, because I’d be lying through my maloclussed teeth. I will say that I believe that the stress that comes from the constant fear is sickening and aggravates every single one of my diagnoses, and I think that goes for most people.

Chronically ill people are constantly suffocated under stereotypes of what we should be like, and while that’s a horse of a different color and a post for another time, I will say that these stereotypes are unnecessary pressure placed upon us. To cut my rant short, there is no correct way to be chronically ill, regardless of what society tells us.

Though we are constantly hurting, end up in hospitals more than any person should, and even  when our entire futures are unclear because we have no idea how we’ll function, fear does not have to be so tightly wound around our throats, choking out the remaining joy we have. Fear is not the only option. While I’m not totally sure how to make it less dominant in my life, I do know that I am going to start making calmness and relaxation more of a priority in my life, as well as working on acceptance of what I cannot control. Sounds like a piece of cake…right?

The only thing to fear is fear itself. But holy crap…fear is terrifying.

Quit crying your eyes out,

Quit crying your eyes out, and baby c’mon,

isn’t there something familiar about me?

The past is only the future with the lights on.

~Baby C’mon- +44

 

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. Scattered Thoughts

Dear humans of every kind and some robots as well,

I have been wanting to write for a week and I have written four half pieces of four different blogs, yet every time writer’s block rears its ugly head. Well, since writer’s block isn’t a tangible thing I’m honestly not sure what it looks like…but I think it’s safe to assume it’s unattractive on many levels.

Tonight in my Benadryl induced haze I finally decided to give up on my usual form and inspired by a post by Laura, also known as RibbonRX, I decided to post about all the messy fragments in my mind. (Also, if you haven’t seen RibbonRX, you should. Laura is a ridiculously lovely and brave human being who is currently recovering from brain surgery, and I bet more followers would make her feel better. Click the blue here to be transported to her site after!).

Let the scrambles run wild.

First off, this week has been absolutely dreadful and complex in every possible way. I am still recovering from my Emergency Room visit, and a massive life change happened not long after. I can’t talk about that currently, but it certainly has exhausted me down to my soul. It’s going to make my life difficult for a while, but I do think it’s for the best. The best things to do aren’t always the easiest.

Due to this change as well as the rest of my existence, I’ve been contemplating one big question: What does it mean to be Eleanore? I haven’t thought of many good answers to that yet, but I’m working on it. When I figure it out, I’ll let you know.

On a completely different note, I am extremely pleased with Panic! At the Disco for coming out with a new song called L.A Devotee. I was born and raised in California, and there are endless wonderful qualities about it. But it isn’t the only great place, and there’s many negative aspects of it as well. The constant romanticizing of my home state in the media got old about 15 years ago. This new song actually highlights the less fabulous qualities of California, and I’m just elated that a popular band decided to go a different direction for once. I mean, really, how many fucking songs can we have about California?!

I also made a new friend recently named Shawn, and he’s wonderful. Today he asked me how many states I had visited and I thought my answer would be awfully anticlimactic. To my surprise, I had been to more than I thought I had! I have been inside: Colorado, California, Missouri, Illinois, Hawaii, Nevada, Oregon, and Florida. This personal surprise got me thinking about how I and many others often under-appreciate what we have done, or feel that we are never enough. I will be writing about that in full later. Hopefully.

Al the craziness in my life lately has made me think about the fact that for most of my life I have felt like a space invader. I have always felt like a intrusion in the lives of the people I love, no matter how good life seems to be. It seems I don’t really belong where I am and even when I fit into the puzzle almost right, it’s always just that; almost right. Moreover, this lead me to ponder about how those who are chronically ill carry a massive load of guilt simply because we exist. I’d like to make the argument that this is completely unfair, and that we deserve better than this. Once again, I’ll be writing about this in full later.

My life currently is messy, confusing and very much “up in the air.” I’m not sure about anything at all, and my existence is just as scattered and incomprehensible as this post. But you know what? Sometimes it’s alright to be scattered. Sometimes, we have to be okay with not making sense. I’m not okay with it right now; but I’m going to have to be.

Wonderful readers, what are your current scattered thoughts? What sort of things are bouncing about your mind? Please share with me in the comments! No judgement here; Just curiousity and love.

And remember, Don’t Panic!

The black magic of Mulholland Drive,
Swimming pools under desert skies,
Drinking white wine in the blushing light,
Just another LA Devotee.
Sunsets on the evil eye,
Invisible to the Hollywood shrine,
Always on the hunt for a little more time,
Just another LA Devotee.

~L.A Devotee – Panic! at the Disco (This video is a little creepy but I love it. Will Byers gets brainwashed!)

 

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. 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