Dear inhabitants of the Hundred Acre Wood,
I must have turned into Pooh Bear overnight, because my stomach is about as rumbly as it gets. Actually, as I stated on Instagram, it’s less Winnie the Pooh and more Bioshock-y. It feels like a Big Daddy is plowing straight through me. If you don’t know what a Big Daddy is, he looks like this.
Yeah…having that dancing around in my abdomen is not charming. I woke up in the middle of last night to a Vasovagal Syncope frenzy, writhing in pain and feeling positively doomed. Thanks to the fact that I have been through this a billion times, I was able to actually avoid fully losing consciousness. Out of all my episodes, this was only the second time I was able to fight it. I feel like a mutant who just learned to control their powers. Not today, Satan!
Despite avoiding passing out entirely, the episode still takes a while to come back from. I was especially disappointed about this horrible end to my day because aside from that, yesterday was absolutely spectacular in every way, which is not something I’ve been able to say in a while. I went to Forest Park, my favorite place in all of St. Louis. It was the first time I really ventured out on my own in this city just for the sake of it rather than to get errands done. I was excited, but my anxiety was heightened. Still, I forced myself to go. I found myself briskly walking/rolling down the massive Art Hill, finally hitting the gravel with a slight twist of my ankle and exhaustion already setting in. I made my way to the gorgeous lake…pond…moat? Let’s go with moat. I made my way to the edge of the Forest Park Moat, filled with waterfalls and paddle boaters. I set my Ipod on shuffle and in that moment, I felt like I was going to be okay for the first time in a month. I felt, well, happy. I mean look at this. How could I not feel that way?
I spent most of my time in this one lovely spot, perfectly contented. Everything felt beautiful and I felt alive. Of course that was until my everything started to hurt, because turns out, chronically ill girls don’t do so hot sitting on concrete for a few hours. I continued my walk around the remainder of the moat, passing by lovely families, a wedding in progress and a little girl very pleased with herself because she was dressed as a Pikachu. I had finished my lap and realized, much to my horror, that the hill I had walked down was also the way back up. I stared up at it, intimidated, and I felt like it was mocking me. Look at that smug grass. LOOK AT IT.
I’ve been to this park a million times, and I knew there was another way up, but I couldn’t remember the path (thanks to chronic brain fog, of course). I’ve also been pretty convinced each visit that with all my illnesses, nerve, joint, and muscle pain, there was no way I’d be able to make it to the top. In a sudden moment of bravery or stupidity (probably both), I had a deep, gnawing feeling that I had to climb that hill. I have lost so much this year, and I’ve been defeated countless times. Now, I felt it was my turn to defeat something; and it was going to be this smug, grassy hill.
After texting my darling friend Holly, “If you don’t hear back from me in 20 minutes I’m dead,” I started my ascent. One foot in front of the other I headed upwards and it was painful and frustrating. My nerves and muscles sent out shockwaves, my bones felt like Jello. A few times I felt like stopping, but decided not to because I was afraid it would be even harder to start again. It was only when I finally reached the top that I stopped to catch my breath, and smiled like an idiot all by myself in a crowd of people in front of the museum because I beat that fucking hill.
I thought about returning home but the day was simply too lovely, so I picked a shady bench and rested. I gazed out on the grand landscape before me. I watched a handsome man with a sweet black dog lying together in the grass. I saw a family of four with a father in a wheelchair smiling and observing just as I was. I saw Indian families, white families, black families and Muslim families. I saw couples kissing each other and leaning on one another as well as people who were alone just like me, but who didn’t seem to mind. I saw elderly people carefully walking and fresh babies wobbling about. I saw everything, and my heart felt like it was glowing; I realized that while I didn’t know how I would be okay, I knew eventually I would be.
Of course going from a day such as this to writhing in pain in my bed was deflating to say the least. In fact, when I think back to my life, most of my most wonderful days ended up in sickness, pain, passing out, or tears. After 26 years of living with as many illnesses as I have, it has made me realize that this is the curse of the chronically ill. Even the most beautiful days can often end miserably, reminding us that we’re always going to be sick and a little bit different. It’s also no fault of our own. We don’t always have a say in what our bodies do, but all of that can weigh a little heavy on the heart.
Days like these represent pretty much my experience with existence as a whole, and you know, I’m just not sure what to make of it. It’s difficult feeling like even the most magical days are stripped of their enchantment by chronic sickness. I try to remind myself that even though it’s easy to be caught up in everything wrong, the negative doesn’t always have to rip away the positive. Of course that’s easier said than done, but nevertheless, taking the goodness and holding it dear, even when experiencing hell, might not be the most ideal option, but it is the best option we’ve got.
This post took me literally all day to write because I have hardly any energy at all, yet yesterday I was daydreaming under a marble sky, feeling the sweetness of the wind and the water mist kissing my face. Yesterday felt amazing, and while I’m certainly frustrated that I can’t feel that goodness for a longer amount of time, I am at the very least learning to be okay with the fact that just as I will have more awful days, I’ll have plenty more fantastic ones too.
I have said a thousand times before and will for as long as I am able, people who are disabled, chronically ill, and in chronic pain can still have beautiful lives. We can still be alive in spite of everything that has insinuated that we don’t deserve to be as happy as the “average” person. We don’t just have to survive or just live quietly. Everyone deserves to live, experience and thrive. Even if it’s many times more difficult for those such as myself, we’re deserving of wondrous life, too.
So Eleanor take a Green Point three point, turn towards the hidden sun,
You know you are so elegant when you run.
If you run, you can run,
To that statue with the dictionary, climb to her fingernail and leap, yeah,
Take an atmospheric leap, leap and let the jet stream set you down.
Could be there when you land,
I could be there when you land,
Could be there when you land.
~Eleanor Put Your Boots On – Franz Ferdinand (This song came on yesterday while I sat at the top of Art Hill. It could not have been more perfect).
A horse of a different color: I am really struggling to survive right now. So, I am selling most of my things. Please consider purchasing (and convincing others) to help me pay for rent, gas, and my medical bills that are currently adding up to the height of Mt. Doom itself.
Thank you for reading, from the bottom of my heart.
Dear chronically fabulous clumps of stardust that read the contents of my heart and mind,
I am one sleepy bunny, much like the one pictured above. The past few days my arms and legs have somehow felt both like spaghetti and like lead. I’m not sure how that works, but it’s happening. I feel so weak and heavy, and all I’ve wanted to do is sleep. This is not the first time I’ve experienced suddenly being filled with lead and being drained of what little energy I already have. In fact, these mysterious episodes have happened several times a month since I was 13.For those of you who don’t know my current age, I’m now 26. That’s a long time to feel this sick.
Among all my illness one disorder I suffer from is Anxiety Disorder, and because of it, I’ve been banned from Googling my illnesses to avoid becoming anxious over my health issues. However, this is frustrating, because the most recent illness I was diagnosed with is Chronic Fatigue Syndrome. When the doctor told me I had it, I was told there was nothing be done, and was left alone. So here I am, scrambling in information purgatory. I’m not allowed to research illnesses myself, but doctors only give me a vague glimpse of my diagnoses and kick me out the door. What’s a sick girl to do?
Well, this sick girl said, “fuck it,” and Googled anyway, anxiety and all.
It’s incredible that I have an entire system of information within my phone and computer, yet I more often then not completely forget about this privilege. As it turns out, this incredible system called the internet (but you’ve probably never heard of it *scoff*) is for more than listening to New Found Glory on YouTube and fawning over pictures of kittens and puppies. I can actually get important information out of these machines! After some research, I discovered that many people who suffer from Chronic Fatigue Syndrome are often floored by the feeling of becoming weak and heavy, their limbs, just as my own, feeling like they have been dipped in concrete.
I also found that many people with Chronic Fatigue feel dazed, as if they are in a constant state of dreaming. Most of my life I have felt this too; I often would describe it as my soul and body being separated. Since I was a child, I felt as if my body remains here on Earth, doing all the human things it is expected to do, while my soul is somewhere in the atmosphere, floating above me. I imagine we are connected by an invisible string of stardust that keeps us tethered to one another, and some days I feel closer to it while other days I feel farther. It is never where it should be though, which is safe inside me, and on the worst days I fear our tether may be cut and my soul will be lost entirely. I explained this to very small amount of people in my life, for fear that most would think I was insane. Only one person in my life ever actually understood this feeling, though we are no longer friends now, which takes me from one person understanding this feeling, to zero.
Last year, I told a counselor this. He suggested because I have PTSD I may have developed some type of dissociative disorder. But now I cannot help but wonder, is this disconnect the work of Chronic Fatigue Syndrome instead? Oh, how the plot is thickening.
The only reason I had gotten tested for Chronic Fatigue to begin with was because I told a doctor that despite my many diagnoses, even with all that I had been labeled with from Celiac Disease to Vasovagal Syncope, there were still symptoms that did not match any illness I knew I had. A simple blood test revealed that Chronic Fatigue was the newest addition to the villains inside me. This was nearly six months ago; but because I now have no insurance and again, have been told not to research on my own for fear of aggravating my anxiety, I’ve been left in the dark, suffering from an illness I’ve unknowingly had for years.
Upon using the magical Googly machine, I have not only discovered that Chronic Fatigue Syndrome is responsible for me being filled with lead/concrete/other heavy materials (why couldn’t it be Adamantium?) and possibly the reason my soul is sailing among the stars rather than spending life with my body like all the cool, healthy souls do, but it is also the reason I have constant joint pain in the places where I have not been diagnosed with arthritis and why my sleep has been off since I was a teenager. If anything, I can at least take comfort in the fact that I am not crazy for feeling and thinking what I have for exactly half my life. Having an explanation for my sickness also means that I am not alone, regardless of how alienating chronic illness feels.
It is especially unfortunate that like most of my illnesses and diseases, Chronic Fatigue Syndrome is yet another illness that people relate more to the Easter Bunny than to a medical condition. People such as myself have to withstand ignorant comments such as “but you can’t be so sick, you’re too young!” or, “but you don’t look sick!” which after ten years have gone from minor annoyances to me thinking, “oh my god I am going to scream like a banshee because you are so irritating, please get the hell away from me and stop talking to me for the rest of forever.” The only thing that makes suffering from constant pain and sickness even worse is being told that others,whether they are strangers or those close to you, don’t believe you.
Sometimes, I wish the associations that work for our diseases and illnesses would focus on curing ignorance and stupidity towards the disabled rather than trying to cure our illnesses themselves. Most of the time, no one has any reason to not believe someone when they say they are sick. So often my own family,despite seeing me taken away in ambulances, collapsing from pain, and tied up in tubes and wires in a hospital bed somehow still believed I was faking or overreacting. Right before I moved away, they went from those thoughts to thinking that I was just insane, and would threaten me with calling cops and throwing me in a mental hospital where I’d “stay forever” because I was sobbing from pain. Clearly a criminal act.
I am not “crazy,” and I am not mentally disturbed because I am physically and somewhat mentally sick. However, I am exhausted and hurting, and I wish more than anything that those who say they care about me would have empathy and belief towards my pain. I wish there was some type of Sci-Fi machine where I could input every illness I’ve been diagnosed with and hook it up to someone’s brain just for a while so that they could truly understand what I feel. Not forever of course, because I don’t think anyone should have to suffer as I and others like me do on a daily basis. But just for a few moments, I wish that those I know could feel what I feel. The flashbacks spinning in and out of my mind, the impossible weight of my limbs, the pain in my jaw hinges, the stabbing, aching in my spine (and those are just a few symptoms). Currently, a machine such as this does not exist. Maybe it will one day in order to inspire empathy and understanding within the human race.
Or maybe I just watch too many movies and play too many video games.
I’m gonna call on somebody, in a cry or plea.
Could be something discovered in reality.
I couldn’t tell ya, it hits us in different ways.
I know we’re young but I feel so old,
Get me the doctor, call me the doctor.
One by one we become undone,
Get me the doctor, call me the doctor.