Eleanore Vs. Sleeping Life Away

Dear sleepy things, awake things, and things that are somewhere in the middle,

I am currently sitting next to this sweet, sleepy little marshmallow, and he has caused me to think about my own relationship with sleep; so far, it has not been pleasant. I never remember a time in my life when I had a regular sleeping pattern. I have always slept far too much or too little, and no matter which it is, I never feel rested. Last year I was diagnosed with Myalgic Encephalomyelitis, more commonly (and ridiculously) known as Chronic Fatigue Syndrome. Though I was diagnosed with little explanation of what it meant to have this disease, upon my own research I found out that most sufferers of CFS/ME have the same problem. Sleep just doesn’t seem to like us.

In fact, one of the symptoms of CFS/ME is sleeping for as long as you like and still feeling as if you have barely slept at all. Considering I also have anxiety, depression, and a slew of other illnesses, sleep has never been my thing. This is unfortunate as I am a human, and need sleep for, you know, human reasons. This also means that I can only go so far before I inevitably run out of energy. To replenish my energy, I have to drop everything on my “to do” list and take a nap. Some days my naps are only 30 minutes, while other days they last hours, but no matter what one thing remains constant- I always wake up feeling guilty.

Most of my life I have been drowned by comments such as, “I wish I could stay in bed all day,” or, “I wish I could lay around and do nothing, but I have to go to work.” As I have said before, I would trade with that person in a second if it meant I would be healthy and able enough to work a steady, full time job. Each time I wake up from a nap, though I may have a tiny bit more energy, I feel dreary and heavy, my depression surging through me. I slowly check my phone, look at the time, and the same thought never fails to cross my mind – I fear like I am going to waste my life sleeping it away.

I’m often told how I don’t try hard enough or work as much as I should. Aside from this all being complete bullshit, I can’t help but think about my college days. At the time, I was taking a full course of classes, worked three jobs, and still had to do everything else to keep myself going. I was living in an abusive home, going to doctor appointments constantly, and was trying to survive through all my physical pain and business. There were nights I would be out from 7 a.m. to 8 p.m, then would come home to homework, cooking, and all the nastiness within my household. It was difficult to say the least.

To get through my days I would take any chance I could to sleep. I would sleep in my car in the parking lot of my college or I would take a nap at 10 p.m, wake up at midnight, and keep working until three in the morning until I finally got to sleep…before doing it all over the next day.  Throughout this period of my life I kept trying to convince myself what everyone else kept telling me; I wasn’t sick, I was just faking it. I could do all the normal things regular people do if I just tried hard enough. Turns out, I was extremely wrong, which doesn’t take a super genius to figure out.

You’d think being officially diagnosed with so many illnesses would be enough to convince me, but still I kept running. I fell into an even deeper depression, my anxiety was out of control, my physical pain was unbearable, and ultimately I ended up collapsing in the hallway due to sheer exhaustion. As I grew older and received more help for my mental and physical health, I finally accepted the lesson that life had been trying desperately to teach me, but that I had always ignored: I was not like everyone else, and I just had to stop pushing myself, or I would not survive.

As I grow I have learned that the only way I’ll ever be happy is if I come to terms with the fact that I operate differently than others. I need stop resisting my body and learn to move with it, rather than against it, and often that means resting when needed. I’m beginning to understand that when it comes to chronic illness, part of being well is having compassion towards yourself and towards the fact that though others may not be willing to understand you, you have the choice to understand and love yourself.

I encourage you, dear reader, as I encourage myself, to give yourself grace and compassion in every way you can.

I’ve become, a simple souvenir of someone’s kill.
Like the sea, I’m constantly changing from calm to ill.
Madness fills my heart and soul as if the
Great divide could swallow me whole, oh how I’m breaking down.

~Sleeping Sickness – City and Colour

 

Eleanore Vs. Pop-Punk Perfection

Dear pop-punks, punks, metal heads, hippies, and everyone else I can’t think of because wow I’m tired,

Last night I went to my first pop-punk show in two years. It’s been far too long considering when I was a teenager, every bit of money I had went to concert tickets. I would do odd jobs around my house, save up allowance, and covet every piece of spare change I could find. My change would be safely stored in a dinosaur piggy bank until it was heavy enough to evoke a trip to a coin machine. Music has always been my affinity, my priority, and for a while, I had enough money to at least somewhat feed my obsession.

Of course, in the past two years, gaining more independence and losing some of my health meant also having far less money. Now I find myself counting pennies to save up so that I can hopefully one day live in my own home, rather than the spare room of someone else’s. Thankfully, I’ve always been fairly talented at sticking to a budget, and every now and then I have a few spare dollars to put towards something that makes me happy rather than just keeps me alive.

Most recently, those few extra dollars brought me to The Ready Room in St. Louis last night. My friend and I (another person who also suffers from chronic illness) went early and ended up snagging the only table in the place that was in view of the stage. It was also next to the free water cooler, so we immediately dubbed it the “sick girl corner.” It was absolutely perfect for us. Since I am no longer 18 and am in chronic pain from multiple illnesses, standing for four hours is no longer a talent I have. I was ecstatic that my body wouldn’t be screaming, “get me out of here!” while waiting for one of my favorite new bands to take the stage.

As I sat waiting for the headliner, I sneakily observed the crowd. I am an analyzer, a people watcher, or as some like to call it, a creeper. The diversity of the crowd brought me so much joy.  I was surrounded by people of every kind, even several with variations of chronic illness. Their presence only affirmed what I love most about music; it does not give a single fuck about your abilities or inabilities, whether you’re jumping in the front or can only gently wiggle in the back. We’re all there for the same reason, our passion for music driving us to be nothing short of ourselves, whatever that means to us.

My friends and I happily sat just out of reach of the rest of the crowd, gently bopping along to the opening bands. While at times I felt slightly bittersweet that I couldn’t be on my feet, I tried to ignore the harsh judgement of my insecurities and enjoy the show.  Finally the headliner took the stage; State Champs, a fairly new Pop-punk band that immediately won me over when Nat posted their song “Secrets” to my Facebook. I felt the explosive drums in my chest replacing the constant tightness of my anxiety. I watched everyone dance and jump, hands in the air, fingers reaching for infinity. Despite having little energy and my back aching, my friends and I made our way into the crowd. well, okay, at least to the back of it.

We entered the main area, trading the light of the bar for the darkness of the venue, splattered with blue and white lights that danced in time with the music. The voice of the singer, Derek, was uplifted by the voice of hundreds of people singing along with him, myself being one of them. I couldn’t crowd surf like many people did, nor could I jump! jump! jump! as we were directed to. Instead, I ferociously wiggled and danced with fervor. I bounced and I screamed and I sang as loud as I possibly could, feeling as if my vocal chords might implode and not caring if they did.  During their song Slow Burn I sang especially loudly with the chorus:

I hope it all comes back again,

I want to get stuck in your head like ,

Everlong playing on the late night radio.

I closed my eyes and as I moved my sickness was melted away. My pain was blasted into oblivion by drums and guitars and bass. I listened, I sang, I danced, and in that moment, my life was perfect.

 

Every day I face challenges that sometime feel too monstrous  for me to conquer. Some days I feel strong enough to fight back, determined and stubborn to change it all for the better. Other days I wake up feeling already defeated, sick and hurting. Regardless, moments such as these remind me what I’m fighting for, and force me to acknowledge that the battle is always worth it, which I appreciate since chronic pain can make it easy to forget. I am reminded my existence doesn’t always have to be painful and that my happiness doesn’t always have to be extinguished. I am working on collecting these moments and keeping them close to my heart so that when I am defeated, I can look back and realize that no matter how tiresome and difficult my life feels, it still contains a few perfect, untouchable moments; and I am just so incredibly grateful to be alive for them.

We set a fire that both ends with our best lines,
And best intentions.
Let go of what we know, and make tonight our reinvention.

~Slow Burn – State Champs!

Eleanore Vs. A Battle With a Calendar

Dearest human thingies,

I have a profusion of hopes for my life; even on my most unwell days, I still hold a light inside me. Some days it is just the flicker of a struggling candle, while other days it is a beacon of light that encourages me to move forward.  Either way, it is always there, whether it is whispering or shouting. One of my biggest goals of all is to become a true writer. As I’m sure you are aware, that’s not a quick or simple goal to accomplish. I’ve found some great guidance here and there ,especially from WordPress University; a guide I didn’t even know existed until I accidentally stumbled upon it. It was like finding out Jackalopes truly were real (I still have my hopes up for that one. Don’t judge me, internet).

One piece of advice I have come across in regards to motivation and time usage is to create an editorial calendar. You know, a calendar of what I write on what day to keep me on a steady pace towards my dream. I thought this was a novel idea, so I printed out a pretty little calendar with a donut design (I’m an adult, I swear!) and was thrilled to create my plan. Later that day, before I could work on it,  I became exhausted, my body hurting and aching while my mind fell into a haze, and I resigned myself to my bed after a day of running around and helping my adoptive mother with all the things.

This has lead me to a conundrum that I feel has been an impediment in my life for as long as I can remember. It is extremely hard to stick to a schedule of any kind when my life is ruled by my health. Even planning what to do in a single day sometimes doesn’t work because I think I had more energy than I truly do, and I’m left frustrated and unproductive.

I would love to write out an editorial calendar fro the next three months, and I do think it would help immensely. But how does a schedule work when I must constantly rearrange it last minute because of my health on any given day? This is a large part of what I have such a hard time finding any steady work. I am an incredibly hard worker and I am extremely motivated; however, regardless of how motivated I am, if I am in too much pain or too unwell, that takes priority, and nothing else matters.

Of course some would say, “just work through it!” or “just take more pain meds!” But they don’t understand that I already am working through my physical and mental pain every single second of every single day. Some days it is  just too much. Some days the pain in my body is too severe for me to move around my home, or my chronic migraines are too severe for me to think through. I have better and worse days, but the pain is always there, and I do indeed work through it. But even for someone like me who has become accustomed to the feeling of chronic pain, there is a limit. There’s only so much one person can take, yet almost daily I cross that line because after all, I still need money to survive.

No matter how much we hate it or refuse to admit it, for those of us with chronic illness, our health comes first. Even when we try everything in our ability to control or ignore it, even though we sometimes win, we nearly always end up paying for it later. Of course, this doesn’t mean we can never do anything. I simply refuse to let my illness take over my entire life. If anything, I have to maintain the belief that there must be a balance.

For people such as myself, there must be a way for us to be able to plan, organize and work while still remaining flexible enough to care for ourselves as we need. For each of us, this means something different depending on what exactly we suffer from and what we need in regards to our care. No one chronically ill person is like another, even if we have the same illnesses, but I’m sure many others share this same conflict.

My hope is that despite my ongoing frustration and struggle, the realization that I am in need of a particular way of weaving work into the rest of my life will only motivate me to create one that is both healthy and productive so that I’ll be able to succeed in the way that is most fitting to my situation. I may not have started out with a very good life; but I am a stubborn little asshole who is determined to create one without causing a great deal of harm to my well being. There are many people that do sacrifice their health in order to work, and I know how hard that is as I have done it myself. In reality, no matter how sick a person is, they still need to make money in order to survive. I’ve been in that situation most of my life, and I currently still am. But I am so painfully unhappy with the way things are, and more than motivated to change it. I’m not sure exactly how just yet, but I’m working on it. And dammit, I will figure out how to plan my editorial calendar!

Here’s to my future, and all of yours.

If you are a fellow writer who is slowly yet surely building your blog, check out the free WordPress Uni. I love it, and it is wonderfully insightful! Click here to be magically transported! Woooooooaaahhhh!!!

Let’s make this happen, girl,
We’re gonna show the world that something
Good can work, and it can work for you
And you know that it will.

Let’s get this started, girl,
We’re movin’ up, we’re movin’ up
It’s been a lot to change, but you
Will always get what you want.

~Something Good Can Work – Two Door Cinema Club 

 Eleanore Vs. Abby Normal

Dearest blossoming humans,

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

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

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

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

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

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

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

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

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

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

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

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

~ Sing – My Chemical Romance

Eleanore Vs. Wandering Thoughts in Wichita

Dearest readers,

I have gone on an unintended two week hiatus from my blog. I have found that in general my life is always better when I’m writing regularly, and since I have not been able to do so I have felt a piece of myself missing. The reason for my absence was largely due to the fact that right as I was starting to find my groove in life, working towards each of my most paramount goals, I was suddenly floored by several bouts of sickness that made doing much of anything exceedingly difficult.

First it was strep throat followed by severe GERD. After wrestling with different medications and adjusting my eating habits even more so, I was able to get my GERD mostly under control. I thought that I was going to be able to resume my hard work until I came down with an Upper Respiratory Infection, and for all my stubbornness I finally had to stop absolutely everything and rest. I became so weak I could hardly walk and struggled to breathe with the weight in my chest from the infection, and ultimately had to call upon a dear friend as well as my boyfriend to assist me in the Emergency Room. Despite it all, I am happy to say that I am now in Wichita, Kansas for the week, able to breathe and enjoying a much needed rest from the insanity that has been my life.

Through all this temporary sickness piling atop my chronic illnesses that I battle each day, I started to think, “I am so tired of dealing with illness and being sick. I don’t want to think about it anymore or have anything to do with it.” This thought was awfully distressing considering I have devoted myself to this blog which is mostly about living with chronic illness at a young age. This brought me to an inner conflict that started to break me.

A few weeks ago I had one of my many existential crises and I flew into a mental frenzy. I wondered if it was healthy for me to focus so much on my chronic illnesses and write about it as I had desired to for so long, and if this was really what I was meant to do. My goal had always been to write in order to help both myself and others like me, but I wondered if that was what I was really accomplishing. If writing was not what I was meant to do, have I wasted the past two years on something that would amount to absolutely nothing? I felt like I had no direction, the future I had seen myself so clearly in now turning into a jumbled, blurry mess.

I ended up calling my friend Brian to talk to him about it, explaining what triggered my crisis and where it had lead me. I told him that I wanted so badly to make something beautiful out of all the suffering I have endured throughout my life, but I also needed to survive, and maybe finding a “normal” job was the best option since I nowhere near surviving right now. I explained how exhausted of suffering and how the peaceful, more composed life I dream of always seem to fall short of my hands. After my explanation, he repeated to me one of his catch phrases that he has told to me a thousand times before. “I think you are doing the right thing,” he said firmly, “but the right thing to do is sometimes the hardest.”

Here I sit in a new friend’s lovely home in Kansas. His home is lovely and comfortable and filled with things he and his fiancee love, included their sweet dog Thunder. I am thankful for the opportunity to visit a new place, but every time I meet someone my age who seems to have their life together, I can’t help but think, “this is all I’ve ever wanted, won’t it happen for me too?”

Some people in life are extremely lucky. They grow up healthy in loving families,  go to college, find stable jobs, and the rest of life continues on. Others are less fortunate and consistently fight through life. I haven’t the slightest idea what makes the difference, or how one life can end up so unlike another. In my writing I reaffirm that those of us who suffer from abuse, chronic illness, or a lack of stability in the most important parts of  life a battle are never less deserving of happy. We can still have fantastic lives, however it does take more time, energy, and resilience to get to that same point others seem to come to so easily. For all my desire and jealousy, I easily forget that I too am on my way. I may not have very much money or even a home, but nevertheless, I am on my way.

There is a painfully cliche proverb used in times such of these, and if you know me at all, you know that I have no tolerance for finding them in most writing, especially my own. Yet every now and then, I come to a point in my life where I think, “damn. Confucius was onto something,” and I have no choice but to use one of them. So here it goes:

It does not matter how slowly you go as long as you do not stop.

I hope to get back into the regular swing of my life once I return from vacation, and most of that includes working towards the future I yearn for. For now, I hope to enjoy my short visit here with my boyfriend, good friends, and the lovely warm weather.

This is gospel for the fallen ones,
Locked away in permanent slumber.
Assembling their philosophies,
From pieces of broken memories.

Their gnashing teeth and criminal tongues conspire against the odds;
But they haven’t seen the best of us yet.

~This is Gospel – Panic! At the Disco (Piano version because I love it) 

 

Eleanore Vs.Rebellion Nose!

Dearest readers,

Yesterday I went to get my monthly haircut and promptly took a selfie because I felt shiny as fuck. I also wanted to take a picture of my hair looking nice before the severe storm came and had the chance to ruin it. I think I look pretty okay (and not too sick) in the photo; my hairdresser did a truly fabulous job with my hair, but a tiny spot in the photo caught my eye . That little red bump on my nose that looks like a pimple but is actually not; it is a permanent scar from one of my many failures.

When I was 20 years old I began to slowly come in to myself and decided that I wanted to start on what I had hoped would be a journey of getting lots of tattoos and piercings. I decided to start with my nose (because it already stands out so much it may as well be embellished). My friend had it done a year prior and had no problems, so I thought that it would be just as easy for me.  A quick shot, a little blood, and I’d be on my way.

Of course, because I am me, I had no such luck. I went to the mall to a shady little kiosk run by a woman with a solemn face that expressed she had no interest in anything including piercings. She drew a black spot on my nose, then told me bluntly, “don’t. move.” Those were the only words she spoke to me. She then shot my nose with the piercing gun, and naturally I flinched because it was loud and…well…piercing. (I’m a writer, I swear!) “You moved!” she scolded. She pierced me again, and again… And then I passed out.

Though I was unconscious I am sure I fell from the raised chair onto the tile mall floor. I woke up in a sweaty, nauseated daze to the woman and a security guard look down upon me. The guard was noticeably worried while the woman still had yet to express a single emotion. As always, my Vasovagal Syncope was triggered and I ended up being carted off in an ambulance. This was also before I knew I had the disorder at all.

At the time I was living with two family members who were also the ones who were the most abusive and dysfunctional. I did not tell them I was going to get my piercing because I knew they would have prevented me from doing it after demeaning me relentlessly. Of course, I ended up having to tell them since I had to be fetched from the hospital.

When I arrived home it was just as I predicted; I was screamed at, scolded, made fun of, and humiliated thoroughly. I was still feeling sick from my episode and was feeling worse by the moment. I had fallen to the floor unconscious in front of a number of strangers and yet somehow they thought I needed to be made to feel worse. I went to my room, barricaded the door (as I often did because it is a trick you learn living in an abusive home) and cried for several hours. I felt frustration, guilt, shame and hatred for my entire life. Dramatic, I know.

This experience was only one example of many instances where I tried to do something seemingly normal for my age and it turned out terribly wrong because I am just not like everyone else. My chronic illnesses love to remind me that I am unique, to say the least. Now, seven years later, I still find myself often focusing on all that I can not do. it’s depressing and exhausting to realize multiple times per day that things others don’t even have to think for a second about are difficult or impossible for me for one reason or another. Whether it is taking a bath, lifting something, eating regular food, dying my hair or any of the other numerous things I either  cannot do or have to work extra hard to do, I never get used to my can nots.

It is incredibly easily when dealing with chronic illness to be sucked into the world of can nots. It happens to me pretty much on a daily basis, and it does me absolutely no good. It does not help my anxiety, my depression or my physical illnesses. Especially in my worst bouts of depressions, my inabilities seem to overtake me completely; and they leave me feeling positively depleted.

I did not have a healthy childhood or a healthy teenage life. I was also not a healthy young adult and I am not a normal adulty adult now. Through each stage of my life, there were parts of life that people of my current age should be able to experience, even if it gets them into a little bit of trouble. My entire life, I was too sick to be edgy, rebellious, or mischievous. Though I still had a few late nights and I did sometimes lie about where I was, I always paid for it, not because I was caught but because my health would constantly betray me.

BUT THEN.

I remember that I rebelled at a very early age against my abusive family and refused to either be like them or be permanently damaged by them. I recall every illness I’ve had to fight off and every hospital stay I’ve  had to get through without proper support. For every bully and abuser I have had, I eventually ripped  myself away from them in hopes that I would find a healthier life, even if I had to fight extremely hard for it. I’ve fought against depression and anxiety for years, and every day I am alive is a day I have won, even if I can barely get out of bed because of it. I am constantly rebelling against that which does not positively serve me.

If there is one thing Star Wars has taught us, it’s that badass rebels come in all forms. Some are tattooed and pierced, others in sensible sweaters or suits. Some are space cowboys while others are alien princesses. Some with hidden illnesses while others are in wheelchairs. Most are a combination of all sorts of aspects that make up who they are on the inside and outside. Regardless of what we can’t do or what we look like (or don’t look like, in my case) what we can do is so much more important. It can be difficult to remind ourselves of that, but no matter our restrictions, our capabilities still matter. They matter so much, and they can still be invaluable to both our lives and other’s. We can all be rebel fighters of our own lives.

I’ll be there for you, Jyn. Cassian said I had to.

~K2 the sassy robot

Eleanore Vs. Being My Illness

Dear stardust clumps,

Lately I have been stuck thinking about the origin story of Sickly Stardust. Not only my blog alone, but my entire life as a chronically ill person. Momma Rose asked me recently if I remembered when exactly I became ill. I explained to her that while I had been sick since birth, there were many events that unexpectedly threw me into the Upside Down, the worst being when I turned 18.

Right as I was deemed legal I was also deemed a Celiac. I hadn’t known it but the disease was tearing apart my body; I was severely anemic and malnourished, going into anaphylactic shock every three months, fighting to stay awake. When I look back, I was really fighting to do pretty much anything. There are many frustrating parts to getting diagnosed with a disease, the worst of course is actually having a disease. But there are other parts I wasn’t told about when going through a diagnosis. One of the aspects I struggled with the most was telling my friends that I was no longer an average teenager, but had suddenly been forced by my own body to figure out a new way to live.

I was conflicted about who to tell about my diagnosis and how I should go about it. I wondered if any of my friends would truly care, or if they would think, “why is she telling me this?” I considered the fact that since they were all completely average teens, they would have absolutely no idea how to react to one of their friends now being chronically ill. I feared I’d become a social outcast because I could no longer eat  at restaurants, and I at the time couldn’t even fathom sitting with people eating everything that was now dangerous to me. I also worried that because of my lack of health and energy I would quickly fall behind everyone else my age. For a while, I did.

As time went on there was one particular phrase I was met with – “you aren’t your illness”. I came to understand that many times this phrase is used when others have nothing else to say about a difficult health situation. Admittedly I have even heard this phrase in advertisements and from medical workers, all of them hoping to be encouraging. I comprehend that they usually mean those of us who are chronically sick have more to us than sickness. I agree completely with that sentiment, however as I have spent my entire life being chronically ill, I cannot help but think, how could I possibly not be my illness?

I’ll be honest, there are certainly times I struggle to remind myself that my personality encompasses more than my medical history. But every day I wake up in pain, persistently nauseated and fatigued before my day has begun. The pain reminds me chronic illness is very appropriately named; it is chronic, indefinite, everlasting. My illness affects every part of my daily life, my likes an dislikes, and they absolutely affect my personality. Therefore it is impossible for me to truly believe that I am not my illness. I most certainly am my illness, and my illness is me.

Instead of trying to minimize, ignore, or run from it, I have decided to change the narrative entirely. I am my illnesses, and they are me, and you know what? That is completely okay.

A few weeks ago I awoke in the middle of the night to one of my vasovagal episodes which can best be described as feeling like my brain is short circuiting. I started to shake and convulse, the nausea and intense sickness overpowering me. I called for my adoptive mother to bring me water and ice in hopes that I could prevent loss of consciousness. She came with the items I needed and I expected her to walk away and leave me to my misery as so many before her often did. Instead, she knelt beside my bed, held my hand, and helped me through it for the next hour until we were able to stop the shaking and I was able to be slightly confident that I would not pass out.

I don’t enjoy these episodes. In fact, I’ve explained on multiple occasions that they are one of the most dreadful parts of my chronic illness. I wish more than anything that I did not have to endure them for the last 16 years; however, for all my hoping it remains true that these episodes, as well as every aspect of my health, is a part of my life here to stay.

I am strongly against the romanticizing of disability, chronic illness and the suffering that entails being a person like me. However there is a distinction between romanticizing and wanting to change my view of a situation I had no choice but to live. If I can’t choose how healthy my body will be I can at least impact how I think about it.

There is a immense amount of fear, guilt and shame when it comes to chronic illness. Though I am a blunt and transparent person, especially in my blog, it never gets easier to explain to someone that my body doesn’t work as it should. No matter how many times I tell my stories I still fear being misunderstood, minimized, or worse; rejected entirely. I sometimes feel that I am not worthy of the time of others because I seem to be such a difficult anomaly. I worry that I’ll never be deserving the of happiness that everyone else around me seems to find with far more ease than I’ve ever known. I feel like I am too much work, even when I try to make life as simple as possible. I have been convinced by both my self deprecation and the abuse of others that ultimately I am little more than an inconvenience.

Well. Fuck all that. It is time to stop trying to convince myself that I’m not my illnesses . I am my illness, but look what I can do with them. Look how hard I fight, how much I try, how beautiful life can still be even with all that tries to hold me back. It is okay to accept chronic illness, to talk about it, to acknowledge it without awkward silences and bland cliches. I want to be myself, in my entirety.

I have spent the majority of my life wishing myself away, refusing to accept that this was the one life that I have been given for some unknown reasons that the universe never let me in on. Regardless of the reasons that I exist, I am officially  done with self loathing. Human life is not supposed to be convenient; it is supposed to be vibrant in its complexities, negative and positive.

Manic depression’s touching my soul.
I know what I want,
but I just don’t know how to go about getting it.

~Manic Depression- Moon Tooth (Hendrix Cover) 

Eleanore Vs. Love, Gratitude, and an Addition to Her Life!

 

Dearest things that are called humans,

Jeez, that title is way too long, but it is accurate. Once again it is a beautiful blueberry day here in St. Louis and I am just loving it. Clearly it is a perfect day to sit with my wonderful friend Amanda in a coffee shop and write indoors. You know, where the sunshine isn’t. Allow me to flashback to last week in order to set the stage:

On Valentines’ day I had the joy of spending most of it in a dental urgent care. I sat there patiently waiting and listened to all the names being called that were not my own. “Maria,” the receptionist called. At the sound of the familiar name, the thoughts in my mind began a ballet within my head and triggered something wonderful. Maria is my grandmother’s name; and if you know me or have been a reader for some time, you know that that my grandmother is my favorite person in all of existence. Well, a few people are on that list, but she’s at the very top.

Last year I made the decision to change my name (link at the bottom that explains why). I chose Eleanore Estelle, roughly translating into the one shining star, a meaning I put together purely out of love and hope for myself to be able to triumph over every one of my struggles.  Since changing my name I have been happier than ever. Changing my name in turn changed my life for the better, which was exactly what I had hoped for. I feel like I am genuinely myself and I have continued to become more myself as I carry on through my life with my new name that I hold so dear to my heart.

All that behind said, from the start of my decision I realized that I was missing a middle name. The past year I have been ruminating almost daily about what I might make it. I thought of having no middle name at all. They’re not entirely mandatory. In fact, neither of my grandparents had middle names because in Europe at the time it simply wasn’t the fashion. Still I felt that maybe I should have one, though what I wanted it to be was little more than a giant question mark constantly floating above my head like a confused Sim.

Flash forward to the dental urgent care on Valentines’ Day, a patient that carries the same name as my darling grandmother sets me on a path of discovery. I thought to myself how lovely it would be to have my middle name honor my grandmother, a woman who for the past 30 years has been the savior, heroine, and caregiver of my siblings and I.

I pondered more, feeling a spark of something that wouldn’t quite catch. I resolved to leave the idea open in my mind’s attic for whenever I chose to revisit it, if ever. After my four hour dentist appointment, I went to see my Valentine and did my best to leave my spiraling thoughts and anxieties at rest. I drove back home later that night chasing a moonlit freeway. My brain clicked on yet again, the thoughts about my middle name dropping down from my attic into the very center of my concentration. “Marie,” I thought. “My middle name should be Marie!” I turned up my music, and I wiggled with pleasure at my decision.

My inspiration for my middle name is only half due to my desire to honor my grandmother. The rest comes from two years ago, when I had the most difficult surgery and medical experience of my life which I honestly didn’t think I’d survive. I had several amazing nurses, two especially that without I would not have been able to withstand the stress, sorrow and pain I was experiencing. One was named Angelica, a sweet, compassionate and humorous woman who was the first person I saw when I awoke from my anesthesia induced slumber. The other was all of that and somehow even more, taking the time to pay extra attention to me whenever she could, brushing my long hair every morning and every night, and after only the second day of my week long hospitalization deemed herself my “hospital mother,” showering with compassion to compensate for my lack of support during what seemed like an impossible part of my life. Her name was Marie.

Marie and my grandmother, Maria, are two of most compassionate, mighty, and fervent women I have met in my life, and to share a name with them both would be a tremendous honor. Unfortunately I cannot have either of their blessings in this decision. My grandmother has Alzheimer’s and doesn’t know that I changed my name at all, or most other things about me. I have no way to contact Marie (though I intend to try, because I want her to know all of this). Nevertheless, I sincerely hope that they would be pleased by how deeply and permanently they have impacted my life.

I hope to legally change my name as soon as possible. The only obstacle stopping me is the lack of money. Until then, I can still own my true self in as many ways possible, and I am overcome with joy that after far too long, I finally have a meaningful, powerful, and positive name that truly reflects who I am.

Eleanore Marie Estelle – that’ me you guys!

Marie, come out tonight, you could be my Valentine.

Marie, you’re center stage, you’re the soul for the new age.

I will be the leper, read me my last rite;

A crippled believer, give me sight.

~She’s a Saint, Not a Celebrity – Foxboro Hottubs 

To read about why and how I changed my name, click right here! Do it! No really, you should!

Eleanore Vs. Better Vs. Easier

Dearest humans,

Earlier today I was sitting in my car waiting for my doctor appointment underneath a gorgeously blueberry sky. Living in Missouri I deal with an abundance of gloomy weather, something I am not the slightest bit fond of. This week, much to my pleasure,the sun has decided to eviscerate our gloom.

Yesterday a dear friend posted in his blog, The Dark Side of Neverland. His life has not been an easy one and he has faced some of the most difficult obstacles a human life could present. In his last post, he wrote about his past battles that lead him to where he is now; though it seems in some way his life has improved, he is still struggling in many others. This reminded me of something that I learned a while ago through my own life that I now constantly keep in mind; life getting better and life getting easier are hardly ever synonymous. 

In my own existence this has been proved multiple times. Currently I have less than I’ve ever had in my adult life. However, as my Momma Rose likes to remind me, my life is pretty great considering what I have come from. Mentally I am far healthier than previous years and though my physical health is a constant struggle, for the time being I have Medicaid to give me some assistance. I don’t have my own home, but my adoptive mothers’ home was opened up temporarily to give me more time to figure out my own way , and that has been an enormous blessing.

The last few days my depression was starting to get the best of me. In my birth mother’s voice it tells me that I am worthless, a nothing, and a failure that will never get anywhere. It tells me I’m a burden on those I love and that people in my life are sick of me, so I shouldn’t bother to build relationships. I was feeling the heavy weight of this mental venom, until Momma Rose assured me that each goal I strive to reach is  not attained quickly. I tend to forget how hard it is to build an entire life from scratch. Turns out, it isn’t exactly easy.

Most nights I go to sleep feeling as if I have failed or that I should have done more to help myself get out of my difficult situation. I am trying to get better at reminding myself that these things take time, and that I truly am doing my best. Believing it is another story, but I hope to get there soon. It is an important lesson to learn that life getting better does not mean it gets easier, because expecting that chain reaction can lead to frustration and discouragement . Often times, life getting better means it becomes harder. There is more to accomplish, more to focus on and more at risk. Since I have anxiety disorder and PTSD, the increased risk especially terrifies me. I’ve noticed over time that my anxiety actually increases the happier I am. What kind of fucked up shit is that, brain?!

It seems that one way or another, life is never uncomplicated. However, the reasons for the complexity of life varies. I love the days that I am exhausted and busy because I am spending time with people I love, writing, and adventuring about. The days that I feel exhausted because my life is too much to handle or because I am in agony from my chronic illnesses are the worst. There is certainly a difference between content exhaustion and the kind that causes suffering. I experience a good deal of both.

Life is a strange adventure, but it is the most important we’ll ever have. It will always include struggle, difficulty and a whole lot of the unknown that we won’t always know what to do about. Where does that leave us? Well, I am not exactly sure, but if we do our best with all we have (or haven’t) been given, I think this whole life thing could turn out pretty great.

When life is going well, especially for those of us who are chronically ill,we can become paranoid about when something negative will happen to ruin it. I deal with this sort of anxiety almost daily. I suppose the best thing to do is take not just one day at a time, but one single moment at a time. Enjoy the wind, the sunshine, the love, and take all we can from it, so that even in the most difficult times we will still have goodness stored within us. Of course this is easier said than done; but I think it’s worth an honest shot.

I’d imagine the whole world was one big machine. Machines never come with any extra parts, you know. They always come with the exact amount they need. So I figured, if the entire world was one big machine, I couldn’t be an extra part. I had to be here for some reason. And that means you have to be here for some reason, too.

~Hugo

To check out my friend Jonathan’s blog, clicky clicky! It’s worth it, trust me. I’m a doctor*.

*disclaimer: I am not a doctor, not Gallifreyan or otherwise.

Eleanore Vs. A Written Selfie

Dear you and I,

It has come to my attention that most of my life has been dedicated to dealing with chronic illness. Being chronically ill is a full time job (that doesn’t pay), and this blog has taken over a tremendous amount of my passion as I pour everything I have into it on a (mostly) regular basis in order to help both myself and others feel heard. I don’t mind this, but as my fingers furiously type away, sometimes the idea that there is more to me than my medical history slips right through them.

When I was 15 chronic illness fused itself into my young life. Being so young, it was a struggle to go through all the life changes I needed to. Many people tried to console me using the phrases, “you aren’t your illness,” or “that isn’t the only thing about you.” Well, at first this was meant as consolation, but as time went on it seemed to feel more of a way to either differ from the fact that people  didn’t know what to say to me, or the fact that people didn’t want to hear about it at all.

Over time I learned that I have no choice but to live my life differently than most others my age and those phrases began to irritate me. It is extremely easy for someone who is not chronically ill to tell someone they are more than their illness. They haven’t the slightest idea the strength, courage, bravery, and effort it takes to be a chronically ill person. As I continue my life with my special needs and my chronic pain I can’t help but think, “how could my chronic illness NOT be a tremendous part of me?”

Nowadays it irritates me when I am told that I am not my illness; the phrase feels dismissive. I am my illness. I have no choice but to be because not accepting it is far from healthy, and I already have plenty of health issues on my list. Rather than choosing to be or not be my illness, I now choose to be my illness as well as other things and to encompass it all.

This blog has transformed into purely being about illness to being about every part of me. Sometimes I worry that I deter too far away from the main subject, but nearly everything I write comes back to my health, because my health is a tremendous part of me. It affects how I move, how I live, how I breathe, and how I think, not because I don’t have the strength to fight it, but because I realize that I must stop fighting altogether and instead learn to coexist with it. Of course this is much easier said than done; but I’m working on it, okay?

All this being said, I do think it is important to remind myself of other things that are a part of my life that make me the person that I am. last year I made a post of things about me that don’t relate to my illness, and as I drove home late last night down a mostly empty freeway, I realized that I would love to do that once again. My darling readers, I present to you, a written selfie.

  1. I love to laugh. Laughter is one of my favorite things about being a person, and  my humor is largely what has helped me survive my difficult life. I pride myself on making people laugh in the absolute worst of times, even if I’m in a hospital bed hooked up like a cyborg. I am so thankful to the people in my life who laugh with me. The only thing better than laughter, is laughing with the people you love.
  2. Compliments about my personality make me a glittering, sparkling, happy thing.  I think it is wonderful when people compliment how I look, however, when people compliment my personality or how I think, well, it’s a good way to make my heart glow.
  3. Two of my favorite movies are O Brother, Where Art Thou? and We Are Titans, which is extremely odd considering that most movies I love are nerdy, Sci-Fi sort of things.
  4. Getting hand written letters in the mail, at least to me, is one of the best feelings in the whole entire world.
  5. I have an insatiable sweet tooth and I completely blame my grandmother for this, as I definitely inherited it from her. We especially have an affinity for icecream. Aside from icecream I also like, well, just about anything I’m not allergic to.
  6. I love nature. Though I am not nearly as physically capable as I wish I was, I greatly enjoy being in forests and on sandy beaches. Both are landscapes I desperately miss about my home state, California. Don’t even get me started about redwood trees!
  7.  I used to play bass guitar and piano. I still play my bass guitar on occasion. Aside from them, my favorite instruments are ukulele, violin, and accordion. Don’t ask why I love accordion- just go with it.
  8. When I was a child I was terrified of bugs (especially spiders), people with beards, dogs, and bandaids. 20 years later, I love beardy people as well as dogs and the bandaid thing I’m neutral about. Spiders can still go fuck themselves. Actually, they really shouldn’t, we don’t need more of them!

It has become extremely important to me that I acknowledge my pain and sickness. However, the rest of me deserves equal acknowledgement which doesn’t always happen. All of my parts, the painful, the strange, and the lovely make up who I am; who says some are more important than the others?

If I stand too close I might fall in,
But if I’m too far gone I’ll never win.
If you believe in me I might just want to spend some time with you again.
I’m afraid I tend to disappear into an anxious state when you draw near .
There is no reasoning, it’s quite a silly thing ,
But it’s the way I’ve been for years.

~ Stand Too Close – Motion City Soundtrack