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. The Infinite, Inside Battle

 

Dearest readers,

Today the weather matches my insides. The sky has returned to its usual grey gloom, raining not enough to be beautiful but just enough to make the day feel a little bit sad. I awoke this morning sore and unrested despite oversleeping, and as I became more conscious my mind felt the fog of depression slowly creeping in. I slumped down the staircase feeling as if I had already been defeated before the day had begun.

Sometimes my depression is triggered while other times it decides to antagonize me just because it has the option. Most days I can fight back furiously, managing to quell it before it turns monstrous, while other times it starts out as a leviathan that easily takes me over. Instead of fighting I can only try my best to survive with it until it returns to the back of my mind where it waits until it decides to attack once more.

As I have expressed before, due to my many  illnesses, treating one without aggravating the others has become a complicated challenge. I have tried many medications for my anxiety and depression, yet every single one gives me either an allergic reaction or some other adverse effect that make me more unhealthy; I’m not a doctor, but I’m sure it isn’t supposed to go that way.For many of my illnesses I am left to my own devices when it comes to treatment. It is unbelievably irritating and frustrating because being sick is difficult, but being sick without much help, mental or physical, is infinitely worse.

I’ve noticed that despite becoming consistently more open in my blog, I seem to be doing the opposite in my daily life. Lately I am somewhat adverse to expressing how I truly feel to those closest to me. Part of me believes this is because I am exhausted of people not knowing what to say, minimizing me or not listening at all. This exhaustion is a mix of aggravation and fear, and it keeps me silent, or at most only expresses a small part of how I feel rather than being entirely honest. I realize how strange this is considering I seem perfectly fine with bearing my soul to the entire internet, but what can I say. I’m a little bit odd.

Though parts of this is a mystery to me, every part of my being agrees that I absolutely hate feeling this way. It is unsettling to feel as if my body is weighed down with concrete while my mind is clouded by unbearable sadness. I keep thinking to myself that I feel like this for no reason, but then remind myself that having clinical depression for my entire life is certainly a good enough reason to feel unwell some days.  All day I have felt on the verge of tears, a fragile doll just moments away from falling to pieces. No matter what I do, my depression is louder than my favorite albums, snuggling with a puppy or a warm dish of food I made for myself. My depression is blaring, heavy and as distracting as it can possibly be.

Earlier I had a short conversation with my Momma Rose who I truly adore. She asked me how I was and she could tell that something was clearly amiss, so we sat down and I explained to her just how I was feeling. Finally my tears spilled over onto my cheeks, and I felt myself beginning to come undone. Later on my friend asked me how I was, and I honestly told him, too, to which he replied that he’d do anything he could to help me through my day. It certainly helps when people who are dear to me offer their support, but despite this kindness, depression is cruel and unfair, and I honestly don’t know what I need from myself or others to improve it. I wish more than anything that I knew so that I could ask for help, but the more I try to find an answer the farther I seem to be. I feel helpless as well as irritating to those I love who are caring enough to try to support me, even when none of us are sure how to do it.

Long story short, depression really fucking sucks. I wish I could stick a vacuum in my brain to have it all sucked out of me, but unfortunately that isn’t an option. Whether I am having a good day, an alright day or an impossible day, my depression is always lingering within me. It is always a little cold spot in my heart that keeps frigid no matter how warm I am made to be. Even still, I hope that both myself and those I love never stop trying to give me the warmth I so desperately need on days like these.

Credit for the above art goes to not me (but I am unsure who did it since I used the magical google machine to find it). 

And now it’s getting dark and the sky looks sticky,
More like black treacle than tar.
Black treacle,
Somebody told the stars you’re not coming out tonight;
And so they found a place to hide.

~Arctic Monkeys – Black Treacle 

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 

Eleanore Vs. Cognitive Block

Dear human thingies,

The last week or so my writing has faltered which I find distressing. There is a legitimate and frustrating  reason that I am currently struggling to do what I so adore, but that doesn’t make me any less irritated. I’m trying to balance the two by writing about the problem; after all, that’s what my blog is for, isn’t it? 

Recently I started to experience worse jaw pain than normal, and upon visiting two dentists  found that my wisdom teeth are impacted, which is causing excruciating pain in my already malformed jaw. I need to have them removed, but getting that done is tricky since I am on Medicaid and have a complex pile of health issues. What should be a fairly routine dental procedure has turned into an ordeal for me and I am left in pain, exhausted, and anxious as ever.

This past Friday I visited my counselor as per usual. What was not usual was that I ended up having a panic attack right in her office. I was feeling extremely disassociated, my mind wanting nothing to do with the rest of me, and was overcome with pain. I explained to her that I was having difficult time thinking altogether, because the pain really seemed to be stealing the show in my head. “I feel like there is a giant wall in my brain and my thoughts are trying to climb over it but just can’t,” I told her, to which she instantly replied, “You’re experiencing cognitive block.”

I’ve said before that the only thing worse than being sick is being sick and not knowing why. When my counselor was instantly able to label my current unpleasant mental state I couldn’t help but feel an odd sense of relief, which I was able to beautifully articulate to her by saying, “it’s a thing?!” Indeed, cognitive blocks are a thing. A cognitive block happens when something seems to overtake your mind, whether it is pain, grief, depression or any other intense, prolonged sensation or emotion. As my counselor explained, this is the same reason some may experience what can be known as “blind rage.”

I have never experienced blind rage; however I have experienced cognitive blocks often in my life, the perpetrator usually being depression or intense physical pain. On my worst days, whether I am suffering mentally, physically (or more often than not, experiencing it all at once), my mind is flooded and cannot function beyond the sensation of pain. Some days it feels like a wall while other days it feels as if my entire mind is filled with cement so that my thoughts cannot even attempt to move. I am mentally  paralyzed with pain, sick and unable to process anything, let alone able to help myself move towards a less dreadful mental state…and so I find myself trapped.

These blocks worsen my mental and physical pain therefore preventing me from not only doing what I love, but from doing what I must. I was incredibly disappointed in myself last week when I was told by my boss that I made a serious error at work. Thankfully my boss was forgiving, however I felt terrible because I was afraid I couldn’t truly promise her that it would not happen again. I bit my tongue and assured her I’d be extra cautious because despite my sickness I still need to make money in order to survive. The truth is though, if I am experiencing a block, no matter how careful I am, I’ll still end up doing something wrong. 

Chronic illness means that cognitive blocks are a normal part of life, but I never get used to them. I am never okay with making mistakes, being forgetful, being unable to function as I normally do or feeling forced to leave my passion behind because my mind won’t allow anything to escape it. It never gets easier to feel constantly overwhelmed by physical pain while my mental health struggles to overcompensate for a hurting body. No matter what I am thinking about at any moment, it always comes back to the fact that I am in pain, and what I want more than anything is to be able to live without it.

Unfortunately most of my illnesses I will have all my life, which means that at best I can only try to find the best ways to minimize my pain, which I am working on regularly; or at least when I have the energy to do so. Fortunately, at least for today, after making a million phone calls, far too many tears, the help of a few kind strangers and an extremely lucky cancellation, I miraculously was given a dentist appointment tomorrow to hopefully start on a path to solve my dental issues. I am both excited and terrified, but I hope that I can soon be rid of this pain so that my mind can begin to work at least a little bit better.

Tomorrow is Valentine’s day, and I wish all my darling readers a lovely day with whoever (or whatever) they adore most.  The world needs love now more than ever (including myself) so I hope every kind of love spreads like wildfire. Love each other and love yourselves kindly.  Disclaimer: It is probably a bad idea to set things on fire in the name of love. Don’t do that. 

Oh, friend of mine
Will you be mine?
Please don’t be so…
It’s OK to be terrified (terrified)
Please don’t be so shy.

~Valentine – Pentatonix

Note: The photo above is from a video game called Psychonauts, which used to be one of my favorite video games until I got older and began to become ill from 3D and first person games. To read more about my life as a sickly gamer, click here! 

Eleanore Vs. Being a Medical Anomaly

Dearest delicious things,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

~Incubus – Anna Molly

Eleanore Vs. My Shot

Dearest warriors,

A few days ago my darling friend Nat posted a song to their Facebook called “My Shot” from the musical Hamilton. I haven’t seen the musical, in fact I didn’t even really know what it was about except obviously it had something to do with Abe Lincoln (I’m kidding, don’t hurt me). I pressed play and immediately found myself captivated; the song injected my soul with the fervor of a true revolution.

The song itself is about our country’s past history, and as someone who fell asleep during every history class ever you’d think I would not be so entranced by it. But I found emotions swirling inside me as the chorus exploded out of my speakers:

I am not throwing away my shot.
I am not throwing away my shot.
I’m just like my country,
I’m young, scrappy and hungry,
And I’m not throwing away my shot.

The fire of it all caused my heart to swell with pure energy.

That energy lead me to assess my own personal obstacles. My health, my desperate need for a stable home and stable income, and the uncertainty of my future. Each of my current trials popped into my mind like fireworks quickly fading just before the next thought was to appear.

Thinking about my problems usually causes me to fall short of breath and become overwhelmed by anxiety, however this morning as they appeared and disappeared while I listened to the cast of Hamilton singing, “rise up!” I felt a surge inside me that said, “rise up. You can do this.” There are millions of people in the world who have overcome tremendous suffering. I am taken aback when I think of all that humans have endured and overcome, yet I often forget that I too am a human who has survived and fought to move forward despite that which has tried to hold me back. Many of us are- warriors come in all forms of human beings, and we don’t always recognize the strength of it whether it is in ourselves or in others. 

I fail to realize that where I am now is significantly improved from where I had come from despite my life being far from how I feel it should be. I have found my way here not necessarily on my own, because I did have the help of many kind people, but I was carried forward by both others and my own resilience. I am not as healthy as I should be, and my health will always be a battle, but it is better than previous years. I have a few new friends who are some of the most wonderful people I’ve ever come across. Every day has been one of my shots to do with what I choose. Some shots have been extremely small while others have been monumental, but still it remains true that they all impact my life. 

The past year I have lost, but I have never felt more determined to create the life that I want. In a way I feel like I have more than before because for the first time I have some of the same drive and passion that “My Shot” so perfectly exemplifies.Well, I may not be anywhere near as badass as Alexander Hamilton. Realistically, I’m not even nearly as cool as the man that plays him  (and who wrote the musical) Lin-Manuel Miranda. But I have fought time and time again to come out of every bit of adversity that has come my way.

I have always been the queen of self-deprecation which never makes any situation better; but I believe it is time to realize that I deserve more self love. I want to teach myself that it is okay for me to make mistakes and that my mistakes don’t actually ruin everything as my anxiety would like to convince me. I want to love myself for every illness that sits underneath my skin and for every imperfection. I want to learn to be okay with being who I truly am as I continue to take my shots that I will sometimes miss. Even if I still fail, and I most certainly will fail, the fact that I still dare to strive towards a better life when there is so much that can potentially hold me back must mean something. It must mean something to me, along with my newfound passion for my life. My life has proved on more than one occasion that most of my goals will not come to me easily; therefore I will only succeed by courage and bravery, and by not throwing away my shots.

When you’re living on your knees, you rise up!
Tell your brother that he’s gotta rise up!
Tell your sister that she’s gotta rise up!

~My Shot- Hamilton the Musical

Eleanore Vs. This Again? I Mean, Really?

Dearest readers,

Today I find myself in a dental urgent care, which is not my favorite place to be. In fact, earlier today I compared going to the dentist to traveling through the deepest circle of Dante’s Inferno, and I don’t think that’s being overly dramatic in the slightest.  Yesterday, as well as the rest of the week, I decided to adult as hard as I could; I woke up early, did some yoga, and did everything to ensure that I would have a lovely day. Spoiler alert: I had a terrible fucking day.

There were several reasons why the day was unpleasant, but the one that had troubled me the most, by far,  was my experience at the pharmacy. I was prescribed some medication for GERD because the stomach virus I contracted a month ago is not only still damaging my stomach but has given me the new disorder. This was irritating news, however I figured I’d pop by the pharmacy after my long day at work, get the meds, and soon after find myself in bed which at the time was the only place I really wanted to be.

This did not go according to plan. I went to the pharmacy and I told them that I had recently been granted Medicaid which meant that the pharmacist had to call Medicaid before I could receive my medicine. While I didn’t mind this specific part, what I did mind was one of the other pharmacists asking across the counter, “is the medicine for your daughter?” “I think you have the wrong person,” I responded cluelessly. He walked over to the counter and asked me again. “Is the medication for your daughter?” “No,” I said, finally understanding why I was being asked this seemingly random question. “It’s for me,” I said firmly. He looked at me in disbelief, unsure what to say, before asking me my name and quadruple checking the card. I finally paid for my medication and tried to leave faster than the tears could fall from my eyes.

For much of my life the classic phrases of, “but you don’t look sick!” “You’re so young!” and “It can’t be that bad!” Have burned through my heart and mind when spoken by others, especially doctors and friends. It was worsened by my family who never believed I was sick, who constantly accused me of lying and exaggerating  despite seeing me countless times in ambulances and hospital beds with catheters in my arms and more wires about me than a Borg entity.

For about seven months last year I was without medical insurance and it was by far the most frightening seven months of my life. In that time I gathered 5,000 dollars of medical debt that I still have no idea what to do about. I was rejected from Medicaid six times before having another company assist me with fighting for it until finally I was approved.
Not a month later, while on the phone trying to make an appointment, I told the receptionist I had Medicaid. “Why do you have Medicaid, because you’re pregnant?” She harshly replied. “No, because I’m chronically ill,” I explained. A flat”Oh,” was all I received before I was scolded that I better have my card on me at the appointment to prove I actually was telling the truth.

I have expressed before that one of the only things worse than being chronically sick my entire life is being chronically sick and constantly met with disbelief. For all the illness I have faced at such a young age with little support, I feel I at the very least deserve to not be questioned about why I finally have Medicaid. Believe me when I say there is no pride in having to use it, or having to use it as often as I must to keep my health  just barely maintained. Every single time I touch the card it makes me feel as if I have failed myself, because I was never healthy enough to have a normal life or a normal job.

I love pretty, unique clothing and my turquoise prescription glasses. I adore having my nails painted at all times and I enjoy having my short hair trimmed into a steep angle. But none of that makes me any less sick. The picture you see above I took the morning after I spent the night in the Emergency Room last month. I felt sick and exhausted beyond compare, but I had a small glimpse of hope brought to me by a nice outfit I chose to wore.

The reason I strive to put energy in how I l0ok is because of how sick my body usually feels. My star printed clothing covers my aching bones and my stinging nerves. My bangs hide my facial malocclusion that has riddled my life with difficulty most would never have to experience. My polish decorates my fingers that contain inflamed joints along with the joints in my body. It all makes me feel a bit more like myself, especially when my sickness casts a shadow over the entirety of my being. There is a big reason that I don’t look sick; It’s because I try my absolute hardest not to, and most days, I don’t feel like it is working at all (Naturally, when I do feel it is working, I have to snap a selfie).

I’ve written this a thousands times and I will keep doing so until my fingers fall right off my hands. There is no way a chronically ill or disabled person is supposed to look. There is no standard I should be expected meet in order to convince people that my illnesses are real. Moreover, I am completely utterly exhausted of having to prove that I truly am chronically ill. I don’t take joy in my sickness, I don’t wish to brag about them for the sake of pity. But they are a part of me, a part of my life, and the only way to survive my life is to accept them and thrive with them inside me.

Some days I feel as if I am standing right in front of people, speaking, and yet I remain unseen. I hate the feeling of my heart sinking down into my stomach every time I must put the effort into convincing others that I’m not what they assume me to be. I don’t have much energy to begin with, and being forced to waste it on convincing is tiresome.

All people are different in their strengths and weaknesses. Why is that so hard to see?  I need the world to listen and to see people like me for everything that we are. We are screaming to be heard. Please, please listen.

No lyrics today, just a gorgeous chill song to end a frustrating week. Click the blue to travel to the YouTubes. 

Eleanore Vs. Stories of Beauty and Pain

Dear beautiful readers,

I come to you tonight with a confession. Are you ready? Here it is: 80% of the blog posts I write are inspired by conversations I have with other humans. Bonus confession, I don’t mind this at all. In fact, I adore it and am honored to be a part of such conversations, and I hope they never cease to influence me. 

A very long time ago (as in two days ago) I was speaking with a friend who has suddenly found himself in a difficult situation. The sudden increase of work due to an emergency paired with a decrease of time has left him overwhelmed for an indefinite amount of time. At a point I told him the one positive outcome of difficult experiences is how you get through them becomes a testament to you character. That comment in turn ignited my brain and caused me to think about my entire existence, because that’s just how my mind works. 

As a person who has identified as female most of her life, one of the phrases that was quickly wrapped around my throat was, “beauty is pain.” Generally, at least in my experience, this refers to leg waxing, eyebrow plucking, uncomfortable yet pretty shoes and flattering yet annoying clothing. I personally have always thought this to be a terrible way to live for at least my own life, and instead aspire to a balance between aesthetic happiness and physical comfort.

What I did not expect was for the cliche phrase to morph into something far more personal to me over time. You see, I am a human who has lived though a variety of pain throughout her life so far. I have experienced the pain of my chronic illnesses and sicknesses, the pain of abuse, various types of loss and then some. Though I wish I was not comprised of so much past and current pain, I can’t help but think that it has brought me beauty, for every story I have of overcoming pain has shed a little more light on the person I wish to be within my core.

When I was in college I had a vibrant communications teacher named Dr. Hannigan. He was completely unique in every regard. In fact, he alone that inspired me to pursue communications in hopes that I would make an impact through my own voice. While many of his classes were memorable, one of the most impactful was when he told the class that one’s true character comes out in great times of distress. A really good way to get to know someone, he said, was to go through a terrible event with them.

I’ll be entirely honest; I have not always loved the version of myself that has surfaced during some of the worst parts of my life, and I’m not proud of some of the things I have done in order to cope with my suffering. As I grow older I am trying to become more introspective, not in order to be overly critical of myself, but rather to fashion myself into the very best version of me.

I tend to think of human beings as characters in video games. The best games (in my opinion) put creativity into the backstory of the characters, so that the game becomes much more than beating obstacles and fighting on to the next level. The passion behind the fight, what has lead the character to find the strength to venture into danger, and what they have to gain from beating each level is what makes characters memorable and worth being attached to.

Much like characters of the fictional stories I love, we all have backstories as well, and they play a tremendous part in our existence. In video games, sometimes a character may summarize a story while more elaborate games will literally take you back to relive the memory in vivid detail. This same thing happens to people. When we become close with one another we reveal our histories. Some memories are glimpses while others are intricately recalled, and all of them add to who we are as a whole. They also give explanation to pieces of our personalities, helping us to understand one another on many levels rather than remaining stagnant on the surface.

The stories that come from our struggles show others and ourselves our strength and what we can do with it, especially in times when we were unsure if we could do anything at all. Not to mention, everyone loves a good story. These stories are monuments to our resilience and our passion for our lives, and though they do not come without great effort, nothing is more beautiful  than the courageous people we have become through the suffering.

For every day we thought we could not survive, we made it through. For every mountain of obstacles that overwhelmed us, we fought to take back control. For every broken heart, sickness, hospitalization and worst days of our lives, we may have not made it easily, but we have indeed made it, and that should be celebrated and appreciated. 

Whatever your story, I wish you all the courage you need to make it through to the next part.

Accident or not, admit it; it was a little awesome.

~Dustin, Stranger Things (don’t judge me for re-watching it!)