Amanda W.

By November 20, 2018Story

It’s pretty difficult to narrow down when my journey actually started, but I’d say it became most prominent during my junior year in high school. The summer before my junior year, I transferred schools and moved in with my aunt and uncle so I would have more educational opportunities. It was a gutsy move now that I look back, but one that was needed.

Although I absolutely loved it there, I missed my friends and parents terribly. I am more than grateful for my aunt and uncle opening their home and giving their support, love, and guidance, so I don’t want that to go unheard! However, the familiar yet unfamiliar walls of my room seemed to close in on me at night. I could never sleep. Most nights I would lay awake and just write, or I’d lay in my bed under piles of blankets, no matter how warm or cold it was, because the weight of the blankets was the only thing that made me feel grounded.

My relationship with my parents has always been wonderful, and even more so with my siblings. But, during this time in my life, I felt distant and separated. I saw them almost weekly, but it wasn’t enough. That’s when I saw myself inverting, pushing the people I loved the most away. Even when I was with friends, I felt detached at times. I would find myself not really listening to what was going on around me and only tuning into my thoughts.

It’s kind of weird thinking about it now because it was so apparent that I was depressed. I just played the happy part so well. Toward the end of my junior year, my nightly writing turned into self-hate and I started analyzing myself: my strengths, my weaknesses, what I hated about myself, and what I loved, which seemed to be diminishing. One day I overheard two classmates talking about cutting and how it made them feel better. That planted a seed. I thought about it a lot, but I never thought I would do it.

Then one night, I broke; I had slept maybe four hours in two days and had gotten into a pointless argument with my mom because I was failing French. I was driven into an emotional spiral that left me numb. I felt like I was a disappointment. I cried silently in my room for hours that night and just needed to feel. So, I broke open a razor that was in my scrapbooking collection and I cut my forearm in two small places, just deep enough to see blood appear. I did feel better; the blood reminded me I was alive. I cut on and off for about 5 months before anyone knew, and then I finally told my parents. I went to therapy after that for a few months, which did help as I learned how to cope with what I was feeling.

Things were pretty great for a while, and then college happened. Emotionally, I was pretty unstable. I had very high highs and very low lows, but I was able to cope by focusing all my negative energy into my music and performances. I felt like I was on top of the world for a while. Then I started to get severe headaches, so badly that I was unable to get out of bed and function normally. It affected my grades, my performances, my relationships. I was miserable.

After many doctors, dozens of trials on medications (which I always ended up being allergic to), and a few MRIs later, I was diagnosed with a pituitary adenoma hyperprolactinemia. There was a tumor on my pituitary gland that was producing more hormones than my body needed. I can’t say that this diagnosis didn’t make me feel better, because it did. It was the first time I had actual answers.

The medications I was on to help shrink the tumor made me feel even worse. My headaches were more intense; I was sick to my stomach most days and had more emotional highs and lows than ever. On top of the physical ailments, I was having extreme anxiety attacks where I felt like the whole world was caving in on me. I went and saw a psychiatrist who could give me Xanax and put me on a few different anti-depressants before we found one that worked, or at least helped. It did bring a decent sense of relief for my anxiety, but nothing was helping the physical pain I was in or the emotional pain that came with it.

My parents and I took the trip to New York Presbyterian Hospital, where I met with a pituitary specialist. I knew that just by walking through those doors I was going to hear those dreaded words “You need surgery.” Sure enough, we heard them, and it was a lot scarier than I’d ever like to admit.

Surgery day was pretty damn scary. We had to wake up around 4 am to prep. I was shuffled from room to room, where they took blood, did scans, and put these little sensors all over my face so they could run the MRI machine while doing my surgery. The wait was ENDLESS. My surgery was pushed back almost three hours, and there we were, just sitting in the prep room; me with these weird barnacle things on my face that were outlined in permanent marker. The last thing I remember was having a cage put around my head, and I was out. I remember feeling like I couldn’t breathe, and at one point vomiting blood, but that’s it. Turns out, I was allergic to the anesthetic and was in an induced coma state.

After being released from the hospital, I was having incredibly bad headaches and was leaking clear fluids from my nose. I had to undergo a second procedure due to leaking spinal fluid. They sat me on a table and told me to lean forward and keep perfectly still, during which they inserted a needle into my spine and my arm at the same time. All of a sudden, I got a flush that went from my toes to the top of my head, told the doctors I didn’t feel good, and all I heard was BEEEEEEEEEEEEEEEEEEEEP.

Everything went dark, darker than I’ve ever felt in my life. I could barely hear anything but was still sort of aware of what was going on. I felt light, and then bam! There was pressure on my chest and I felt like I could run a marathon. When I tried to move, they prevented me, and they finished the procedure. The next words were words I was not prepared for. “You have to lay completely flat and cannot move for 48 hours.” And then I was on bed rest for 3 months.

So now I’m home again, lying flat, and able to move at certain degrees and only to use the bathroom or shower, assisted. It was depressing. I stared at the same three walls, day after day, with only a few games, books, visitors, and what seemed like hundreds of pill bottles. What I held onto most were my own self-hating thoughts.

I kept popping more Xanax and more Percocet, and more muscle relaxers to feel numb. And boy was I numb, and at my lowest. One night I was lying there thinking about all that was going on in my life: I just had brain surgery, I was in an emotionally abusive relationship, I lost my job due to the fact that my medical leave was extended, and I was on bed rest. I made a choice that night to not give up, to take back control of at least one aspect of my life, and to make something of myself.

My entire life perspective changed that night, and I began fighting for my life again. Fighting to be heard, to not let people take control of me anymore, and to be the best me I could. I shot for the stars and started my own foundation for brain tumors and epilepsy research and to help those who went through similar challenges to my own. From there, I went on to get a new job where I quickly moved up. Now, the relationship thing took a while, even though I knew it wasn’t right. I couldn’t let go, even though I never should have held on in the first place. But when I finally made the decision and broke free, everything in my life turned around.

Of course, there were still minor medical bumps in the road, as well as unexpected hurdles, but it didn’t matter because I was in the driver’s seat. Now, I am 6 years post-op, feeling better than I have in years, just moved to Massachusetts and am working my dream job.

 

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