Caged Bird

“I see at intervals the glance of a curious sort of bird through the close set bars of a cage: a vivid, restless, resolute captive is there; were it but free, it would soar cloud-high.” ― Charlotte Brontë, Jane Eyre

It hacagedppened yesterday, another flare up out of the blue. I woke up early to head out for my Praxis II exams, which was then followed by my teaching assessment class midterm. I wasn’t worried about how much testing I was going to have to go through, it was more of just wanting the day to be over with. Once the exams were complete I headed home, finally able to rest. I had a nice lunch and took a relaxing shower, then decided to lay my head down for a few before heading out to my education based math class for yet another exam. And that’s when it hit me.

I was laying there and I could feel it, the creeping pain spreading from my neck to the front of my head. It wrapped around my left eye and started to pulse. My back started to tingle and the shooting pain exploded to every inch of my body. I told myself it was just a headache and to not worry. I took some Tylenol and hoped for the best. It wasn’t helping, and my status was deteriorating at an even faster rate. My legs ached and were ice cold. I was having rapid hot/cold flashes. I was in pain from head to toe.

But I pushed through, what choice do you have when it’s an hour away from exam time and at a university that could care less about your medical condition. I was forced to get out of bed, get dressed, and drive myself to my exam regardless of my pain.

By the time I was at school my mind was completely absent. I looked around and it felt like I wasn’t even there. By the time I sat down in my chair for the exam it felt like I was in a dream, those moments when you are dreaming something so real it feels real. Except mine was the exact opposite. I was there, and this wasn’t a dream.

As the exams were passed out I realized I was screwed. It was a packet of 10 pages with questions we hardly even covered. I went through each page and picked out what I automatically knew. When I hit the simple addition problems I stared at the page blankly. The question was to write a real world example for -5 – -5. The answer was 0, but my brain could not think of anything that made sense. I flipped to the next page. Find the error: 10 – -14 = 4. I looked at the problem, stared at it for a good five minutes. The error was obvious and could be applied to the rest of the problem, but my brain just stopped. I looked at the numbers and they seemed so foreign. I went to write my answer and explanation but my hand didn’t want to hold the pencil. Attempt after attempt I failed, I couldn’t hold the pencil and write properly. My handwriting on the test was so poorly written, the spaces between large font letters and sentences made it seem like I was in grade school. But no, just a senior in college having a horrible episode.

When the test was over we had class, 2 more grueling hours of mathematics. By this time I could no longer speak, or sit up straight, or even really look up. I sat in my chair hunched over with my hoodie bunched up around my neck. I was an icicle. At some moments it felt like my breath was even cold. The class passed and I wiggled and waddled out of my seat, having to pause while my blood pressure caught up with the rest of my body. Walking back to my car I was so dizzy and I could hardly breathe. The massive change in temperature blasted me as I went from a lukewarm classroom to a freezing windy outside. As I managed into the car I just wanted to cry.

I was so out of it that even the emotional process of crying was too much for my brain to handle. So I drove home with this heavy feeling in my chest. I felt like a failure, a down right absolute failure. I cursed all of this medical garbage I was dealt and thought of all my other classmates who could care less that I looked like I was dying in my seat. I thought of how wonderful it must be to not be sick all the time, how amazing life must be when your wings haven’t been clipped.

At moments like these I wonder what my life would have been like it I never would have gotten sick. How much different would things have turned out? If I was given the ability to fly from day one would I be someone completely different? If I was given the ability to fly forever would I be like everyone else around me?

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Fall of a Titan

How long do you wait when you’re status isn’t improving?

Midway through my junior year of high school I was being home schooled and was completely bedridden after a diagnosis of POTS. My days consisted of waking up with deep pains all over my body with no energy to even drag myself out of bed. By the time I made it to the bathroom and back I was completely out of breath. I would collapse in bed and wait the day out. Time seemed to not exist. My mind was completely blocked with brain fog and any attempt at doing anything just wouldn’t work. I couldn’t read for my mind jumbled the letters and exhausted itself within minutes. I couldn’t talk because the stutter was so bad. The very thought of opening my mouth caused such immense pain. On some days I would strictly text to communicate with my mother since the slight movement of my fingers was less painful than actually opening my mouth.

The fatigue was all-encompassing and most of the time I needed the assistance of my mother to get around the house, most of the time leaving me with no choice. I mastered what I called the “zombie walk”, when forced to get up I would drag my legs and walk with my arms and back hunched over. In a sense I looked like a zombie walking around the house, which could come in handy if I needed to blend in during the apocalypse. For me this was the best I could do, my energy levels were just not there. Then to mention the actual process of changing positions, once I got some place I liked to stay there for a while because getting up was going to just absolutely be miserable. My eyes would “change” and my mother would hold on to me for a good 5 minutes. I felt pathetic. I felt weak.

My entire life I was raised to be strong, to be independent and rely on no one. And here I was not even able to get out of bed by myself. On plenty of occasions my mother would find me in bed broken out in such a cold sweat unable to move that my then step-father would pick me up and plop me in the car to then go to the hospital. For those of you suffering with the POTS diagnosis you know how much fun the hospital trips are. When I would go to the hospital the doctors would shake their heads and find nothing really wrong, so all you get is hydrated and sent home. For me personally I struggled with severe chest pain and the inability to breathe, which had me going to the hospital frequently. But upon arrival my vitals were fine and the doctors just didn’t care. When I described symptoms that were considered heart attack symptoms I would be practically laughed at and told I was far too young to actually have a heart attack. And throughout all the extreme flare ups I was never admitted to the hospital, well with clear vitals why would they? And back in the day doctors had no idea what POTS even was which made hospital trips even more pointless.

Each and every day I slept, sleeping was all I could do. I would dream of a life where I was actually living. Waking up with my reality was a nightmare all itself. Since I was unable to move much my doctor put me on medication to keep my muscle retention and keep my body from creating bed sores. From there we tried medications for energy, all serious controlled substances that all had the adverse effects on me. I tried Adderall and Ritalin, both made me so exhausted and in so much pain that we stopped immediately. The doctor was stumped since he never heard of those medications having that effect. I tried every supplement in the book, all with no success. My life consisted of staying in bed and sleeping my life away. I felt like I was hibernating and some day I could return to the land of the living.

sleeping titan

After a year of suffering with POTS my stomach started having issues again. This time I felt like I had a rock in my gut every time I tried to eat. So the combination of not eating, not being able to move much, and everything else made my migraines start to flare horribly. When we called the doctor treating my POTS he suggested I get tested for gastroparesis. The two tests to check for this was an endoscopy and a stomach emptying test. The endoscopy was scary since I did have to be put under, but it came back clear so we proceeded to the emptying test. This test was pain free but did require me to eat radioactive eggs, so that’s always interesting. The results told a clear story of how my stomach would not empty properly and the diagnosis of gastroparesis was given. When on average it takes a person to digest a meal maybe 2 to 4 hours, it took mine 8 hours. Again I was happy, another question answered! But there was at the time no FDA approved medication for treatment.

My body was failing and there was nothing I could do. I went through hell as a child and came out stronger, but this diagnosis knocked me down and took my life. I was unable to be like everyone else. I was unable to feel like a person. I was alive, but I was nowhere close to living.