And for my next trick…

November 30, 2014 5 Comments

My most recent work is based on my real life. I hope you enjoy it.

The True Tales of a Brain-Damaged Blonde
A Play In One Act

FRIEND / FAMILY MEMBER / RANDO ON THE STREET: “How are you?”

ME: “Um…”

– FIN –

Seriously, though – I don’t even know where to begin. My writer’s block is often a topic of my writing (how very meta of me!), but the number one thing on my mind (keeping myself alive) is the last thing I want to think about. Sure, it’s my blog, and I can write about whatever the hell I want, but something tells me it would be slightly jarring to go from “Oh, hi! I have a brain tumor – surgery’s in the morning – kthxbai!” straight into a piece ranking the various kinds of candy my husband brought home from China. (Spoiler alert! Act surprised when you see a post about that.)

I’m going to work tomorrow morning. While this might not seem noteworthy (based on my casual observations, I’m usually accompanied by 47,982,722 fellow motorists on Route 128 during the morning commute), it’s a change of pace for me. You see, my last day at work was June 6. How did I spend my summer vacation, you ask? Nothing crazy… just a little neurosurgery, six weeks of radiation, some seizures, discovering I now have Addison’s disease, and a brief yet notable stint as Miss Influenza 2014.

“This was supposed to be the Summer of George!”

These days, when someone asks me how I’m doing, it’s just easier for me to smile and say, “Fine!” It’s the truth, you know. I’m fine. I’m alive. I’m better than fine! I’m fucking FANTASTIC!

Most people would never know anything ever happened to me. I can walk, talk, and much like Barbie, I have fully poseable limbs. Strangely, the only physical scar I have is on my stomach. My surgeons went through my nose to get at the tumor, and they took some fat and muscle from my stomach to protect my optic nerve. Despite my enthusiastic “Take as much as you want while you’re in there!”, they only took enough to accomplish the surgical task. The scar is not THAT massive, but I can only describe my first impression of it as being the demon spawn/love child of Gwyneth Paltrow’s tight-lipped grimace and Heath Ledger in The Dark Knight.

Why so serious, Gwynnie?

Why so serious, Gwynnie?

I was horribly unprepared for the entire procedure. I think because they weren’t cutting my head open, I thought that it wouldn’t be that big of a deal. (With my dazzling 20/20 hindsight, it’s more that I didn’t want to believe it was that big of a deal.) I packed a giant bag full of shit that I never even touched (various wardrobe changes, my Kindle, MAKEUP?!?) and fully expected that I would be rolled straight out of the OR to the neuro floor, where I would watch Law & Order reruns in my yoga pants and send Mr. Seeking Ambition out to get me a decent steak and cheese.

Ha! Bitches be crazy.

My earliest post-surgery memory is waking up in the semi-darkened ICU with someone leaning over my bed, asking me to open my eyes. I assume this person was my surgeon; however, it could have been Mr. Peanut. I was on a lot of drugs. The pain was almost unbearable. I couldn’t open my eyes for more than a few seconds; I couldn’t raise my voice above a whisper. I drifted in and out of consciousness. My husband kept watch over me all night, dabbing my lips and tongue with a damp sponge.

I saw a few pictures of myself from that night several months after my surgery; they still are difficult to look at. In them, I look dead. I don’t know how my husband had the strength to take care of me then; or now. It’s something we don’t talk about often as it makes us both cry.

I have experienced the most intense physical pain, beyond what I ever imagined possible. I am so thankful to God for designing our bodies so perfectly – there is a pain threshold that once passed, you just don’t care anymore. I hit that point at home in my own bed a day after being released; I remember being aware that the bed was shaking and asking my husband to make it stop. The shaking was from him sitting next to me, sobbing, because my doctors had told him he had to take me immediately to the ER. Months later, my doctor told me that if we had waited just two or three hours’ more, I would have died. That is still hard for me to process.

Overall, I spent 10 nights in the hospital. This would qualify me for pretty cool swag in most hotel loyalty programs.

I spent the next two months recuperating at home. The steroids I took to prevent brain swelling and for my Addison’s diagnosis kept me up until 3 or 4 in the morning. I would drink literal gallons of liquid daily. I gained thirty pounds, which is a side effect of long-term/high-dose steroid usage, but it all happened in 8 weeks. My skin pulled and stretched; my husband’s back rubs, which used to be my favorite thing in the world, instead made me cry.

My poor brain was so overstimulated. I could either watch TV or listen to it – not both. I forgot words that I had used all my life. It didn’t get much better when I started radiation. There were times when I just couldn’t get my words out – I felt trapped in my body, and worried that people would think I was crazy. One day, I met with my oncologist and I was explaining to him how I was having a hard time speaking. A little fruit fly buzzed around my face, so I swatted at it as I continued talking. Part of me thought of how bizarre I must have looked to him, so I felt compelled to shout, “It’s a fly! I’m not crazy!” He laughed and squeezed my hand.

Things are better now. Things are different now. I’m on a ridiculous amount of medication and will probably remain that way for many years, if not forever. I get overstimulated very easily – crowds, noise, light – and sometimes just shut down. I have a finite amount of energy; there are times when I literally trip over my own feet because I am so tired.

My constant companion, with tinfoil for reference.

My constant companion, with tinfoil for reference.

I am alive. I am intensely aware of being alive, and how much of a gift that is. I am intensely aware of how ephemeral we all are, and how I want to make a mark on the world. I refuse to waste one millisecond of my life wondering if the radiation worked, or if the tumor will grow back. My first post-radiation MRI is in March; I’m already planning a trip to celebrate the anniversary of my surgery next June.

Part of feeling alive is feeling vulnerable. There is a not-so-small part of me that is afraid to go back to work. What if I have a moment where I just can’t get my words out? It’s infrequent, but it still happens. What if I have a seizure or an Addisonian crisis in the office? Again, much more infrequent, but it’s always a possibility. What if someone asks me if I had a baby? “Nope; I just got fat.”

All of the above may happen: at work, at home, while waiting in line at Chipotle. But as I write this, I am reminded of my true, honest joy in being alive, and I feel fearless. I used to get stressed about the stupidest shit. It took me until I was like 29 to get over being too embarrassed to eat alone in a restaurant. Now, I’m kind of in IDGAF mode. Oh, I forgot how to conjugate devenir in the imperfect? IDGAF! I had a piece of my brain pulled out of my nose and then had protons shot at my head for weeks on end! What work presentation could possibly be worse than that?!

Tomorrow night, I think I will celebrate the successful completion of Day 1 in the way I had originally intended to celebrate post-surgery: yoga pants, steak and cheese, and my man Lennie Briscoe.

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5 Comments

  1. Reply

    cailynb

    November 30, 2014

    You inspire me every day. And IDGAF if the whole world knows it.

  2. Reply

    Judy

    November 30, 2014

    I can never express how wonderful I think you are, Caitlin… and DAMN girl, you can write!
    I never named my tumor, but had I heard the term sooner I may have been inclined to name it Idgaf. 😉

  3. Reply

    Chuck

    December 3, 2014

    It’s 3 AM, and I have just read this post end to end, and I have a newfound respect for your courage, intelligence, and your resilience. I am an unbeliever by trade, but I will keep you in my non-impure thoughts for continued strength and recuperatory powers. Oh, and I heard chocolate helps. Let me know where to send some of the good stuff to. Kudos as well to your husband, for his fortitude too.

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