Dear healthy, unhealthy, and sorta-kinda healthy clumps of stardust,
Hi. Hey. Hello. How are you? It’s been quite a while since I have written as I came down with a brutal case of “creators block.” I couldn’t write, I couldn’t film. I sort of just fell into an imagination sucking black hole. I’m sure this is at least partly due to having an extremely rough few weeks trying to exist, working tons while trying to prevent it from killing me, and the general turmoil my life constantly enjoys dishing out. My birthday came and went in a flurry on Independence Day, and like most birthdays preceding it, it mostly sucked. There were a few nice attributes to it though, and I am trying to remember those so I don’t fall victim to my shitty, pessimistic attitude, as I am finding I do that a little too often.
It’s quite obvious that when people suffer from chronic illness, especially a horde of them, we can feel as though we have little to no control over our lives. Truth be told, most humans in general assume they have far more control than they realistically do; but the average person still has more than someone who is chronically ill.
As someone disabled, chronically ill and often fucked by the whole “having a body” thing (that makes me sound like a body snatcher, but not at all what I mean) it is especially rare to feel as if I have a say in anything that I do, and that goes double for dealing with my illnesses. I don’t get to decide as to when I will have a panic attack or not, and there is no voting on when it will be okay for me to pass out. My nerve flare ups do not schedule themselves when I am less busy, and I can’t make appointments for sudden horrific abdominal pain. My body does whatever it wants, when it wants, an the rest of my being is dragged right along with it.
Though I am fighting my illnesses alongside my body every moment, I’ve gotten used to losing because that’s just what I do; I lose, I deal with the loss, make the best of it, and carry on. It isn’t ideal, but it’s all I have as the person that I am.
Now and then, a moment comes where I successfully kick ass. Monday I was eaten alive by mosquitoes, and since I am allergic to the bites, each bite swelled up to the size of a sootball from Spirited Away. Tuesday morning, I ended up with sixteen sootball sized bites, swollen, burning, and itching. That going on (literally) on top of the rest of the pain I suffer from was far from pleasant, and after barely surviving work, I promptly jetted to the nearest Walgreens to get some hydrocortisone in hopes that it would quell my burning skin.
After I arrived home, showered, and blotted the cream all over my skin, one of my brutal panic attacks were beginning to set in. I felt as if I was short circuiting, my mind unable to function amidst all the pain working from my insides outward. My bones, my nerves, my muscles, my skin, all created the perfect storm, and I couldn’t seem to get a grasp on anything but pain. It was made worse by the fact that since I was using hydrocortisone, it was risky to take painkiller. Considering I am already deeply concerned for my liver and GI Tract because of how much painkiller I’ve had to take in my life, to me at least, this risk seemed far more dangerous than my suffering. So, I went without.
Wednesday morning I was slightly better, but of course, goodness can’t last forever, and I was soon met with one of my throbbing migraines that I get every 3 days or so (sidenote: after suffering from migraines my whole life and assuming it was related to the malformation of my jaw, I was told my by neurologist that chronic migraines is a disorder in itself, and may have less to do with my maloclussion and more to do with my rotten luck). Determined to defend my organs and not take painkiller, I went to bed with a hot pack on my head, eyes shut tight, singing in my brain, “go away go away, go away go away, go away and don’t come back” as one of my best friends and I used to often do as he sat with me while I suffered in pain from my surgery last year. Back then, singing this with him seemed to be a “get better” incantation. It did not work so well this time.
Instead of getting better, I accidentally created a perfect storm to bring on another of of my illnesses; Vasovagal syncope. Between my daily pain, the bites, the migraine, and accidentally overheating from the hot pack on my head, I had triggered my Vasovagal Syncope, and my body was getting ready to bail on this entire clusterfuck. I lay in my bed, unsure of what to do next. If I were to get up and grab the stuff I needed to combat it, namely a ton of water, something salty, and pillows to elevate my feet, I’d double my chance of passing out. If I stay still in bed with my ears ringing, my heart palpatating, sweating like I was playing BioShock on the Occulus Rift, well, chances were I’d definitely pass out. I lay there stunned in sickness, my mind racing to find the right answer, when all I could really come up was DeadPool’s voice in my head screaming, “SHITFUCKSHIT!!”
The episode was not letting up, so I finally decided to slowly walk as fast as possible (if you’re a chronically ill person or have ever been through a surgery or severe illness you know exactly what I mean) to get what I needed. My vision was going in and out of blackness and I scrambled through my kitchen to fill my cup with water and fill my bowl with potato chips before making it back to my bed. I set the water on my nightstand, set the chips on the bed, plopped my feet on the two pillows at the other side of the bed, and pumped my feet as hard as I could as I began to nibble on my chips. You know; for health reasons.
I proceeded with this ritual my boyfriend and I so often did together (though is much hard to put into action on my own) and slowly, my heart calmed, my vision returned, and I was cooling down. Though the symptoms were crawling to a halt, the terror I felt was quickly overruled by sweet relief. For the first time in a very, very long while, I had battled my fainting spells; and I actually won!
The rest of the day I was far too pleased with myself. I was practically beaming like I had just achieved something monumental, when in fact what I did was insignificant to most others. As someone who has been at the mercy of disability, illness, emergencies and all related shitty situations since birth, I don’t often feel that I have control over my body. When it comes to Vasovagal Syncope especially, I’ve said it a thousand times and I will say it a thousand times more that the feeling of losing conciousness is one of the worst. It is terrifying and agonizing, and though I have experienced it often, it never gets easier.
For reason unbeknownst to myself, those lucky enough to not have experienced chronic illness, at a certain point, believe that a person “gets used to it.” It’s true that when living your entire life in pain and discomfort, it does become a part of your life, and you try to function as best you can despite it. My pain is not any less severe to me now compared to how it was at the onset. I will never get used to physical pain, mental pain, and all that they encompass.
Living with pain does not get easier because you feel less pain; it gets easier because we teach ourselves to accept it, compensate for the fact that we are not like other people, and that everything we do is harder for us than it ever will be for the average person.
Even the times I successfully beat my illnesses on a certain day, my pride is quickly stifled by the sobering reminder that I will face countless more days as this one, and many of those days will contain losing battles. If anything, my happiness in the moment should be accounted for, however small that moment is, because I believe a collection of seemingly meager accomplishments will add up to a decent amount of joy. In a life such as mine, every little bit, however little, still counts.
So I ask, what did she have that I don’t have?
You said you’d stay but then you went away,
That’s why I’m telling you to go away.
You say, “Go away, go away,
Go away, go away, go away,
Go away, go away, go away,
Don’t come back here anymore!