My “Live Funeral”

by Kristen StewartSurvivor, Brain CancerJuly 10, 2020View more posts from Kristen Stewart

When I reflect on the scariest week of my life, my heart nearly explodes at the support I received from family and friends. There’s no chance I would have gotten through the week of my emergency brain surgery without them.

This may be uncommon and dark, but more than once I’ve imagined my future funeral, envisioning what it would look like, who would be there, and what would be said about me. Rather than mourning, I’d prefer it to be a bright, lively day, everyone dressed in vibrant colors, listening to energetic songs that boost the mood and fill the heart. Upbeat oldies, check. Dance music that allows everyone to say my go-to “5, 6, 7, 8” as the beat builds and drops, check. Most importantly, my favorite jam, “We Found Love” by Rihanna, must be blasted, and everyone must move, even if only tapping their fingers or bopping their head. I decide I should send out Save the Dates for 70+ years from now.

While I was in survival mode, others were visualizing my life’s fragility and offering their love. Those good vibes were the reason I mentally survived that madness. My live funeral has deeply enhanced my fresh mindset towards sharing love and life.

After this experience I want to share my feelings in the moment – to tell someone if they often make me smile or laugh, when they change the outlook of my day, or when they make me lose my mind. Shout out to you assholes out there who are no longer off the hook!

The thought of brain surgery freaked me out. I was horrified when I found out that I would be awake during part of the procedure. Beyond sobbing, “Are you f**cking kidding?” I asked: “WILL I REMEMBER THIS? WILL IT HURT?”

You may be one of those who have watched a Grey’s Anatomy scene with a patient awake during a brain procedure. My mom is a huge fan, which has led her (a kindergarten teacher) to think she’s an informed medical expert. When I heard I’d be awake during the emergency surgery, she said. “Oh I’ve seen this. Can I show you the scene in Grey’s where this happens?”
“Get out of here Cath, hell no!” I said.

I needed to be awake and alert to answer questions and identify simple photos, so the surgeon could monitor my brain activity. Knowing this, my fear was joined by motivation. I would be participating in this surgery. As a Type A person, I was determined to nail this!

A week after surgery, I had to transfer to inpatient rehab with severe double vision, nausea, confusion, and anxiety. On the way to Rusk I felt helpless and horrified, lying down in an ambulance in NYC traffic during a snowstorm. When we arrived, my stretcher was rolled from the ambulance to the street. I inhaled the crispest wind. I didn’t care that I was being pelted with snowflakes. This was the first fresh air I had experienced in two weeks.

Rusk’s main objectives were physical therapy to redeem my balance, occupational therapy to compensate for my double vision, and speech therapy to help me regain my memory and fluency. They also provided ways to keep me calm: bringing in their overweight therapy rabbit, helping me pot a plant, and providing me with meditation and a diffuser of essential oils. A singer who performed my favorite song from the Broadway show “Wicked” moved me to tears. (I’m emotional!!). On Valentine’s Day an artist in the craft room helped me cut and glue hearts onto paper. Though my attempt was pitiful, the art teacher taped my “masterpiece” onto my wall. Staring at it, I thought, Whoa, is my brain so messed up that I’m now starting over like a kindergartner?

Luckily, I soon remembered that I’d never had artistic talent to lose. My middle school art teacher used to hold up my projects to show the class how NOT to complete theirs.

I quickly dubbed my bed at Rusk, “Jail.” A shrieking alarm would sound if I stood up without a nurse present. During the last few days I got permission to walk around the room on my own. I never would have imagined that walking by myself at age 27 would be a big accomplishment, but I was ecstatic about being able to walk five steps to my bathroom, dress myself, and grab the snacks or drinks I wanted from the nightstand to eat in Jail. Being required to ingest a ridiculously high amount of sodium daily and told my brain needed carbs to heal, Jail was covered in crumbs.

The liberty to walk crushed my anxiety. The adjustment may sound insignificant, but it was monumental to me as it was the first sign of regaining the control I’d lost a month, and a lifetime, before.

Check out more resources from Kristen:

Kristen’s Memoir Book My Brainstorm
 
Kristen’s 1 second every day videos:
2019 (entire year revolves around the journey) 
2020 (until my final chemo day in June) 

All of the posts written for Elephants and Tea are contributed by patients, survivors, caregivers and loved ones dealing with cancer.  If you have a story or experience you would like to share with the cancer community we would love to hear from you!  Please submit your idea at https://www.elephantsandtea.com/contact/submissions/.

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One Comment

  • Oh my God! I relate so so much to ALL THIS! I too have had a good ‘ole stint in Rusk inpatient, in fact just earlier this year following my 7th brain surgery in less than 6 years.

    I’ve thought so many times about planning my own funeral, writing my own eulogy, and making sure people celebrate my life with a party complete with bagpipers leading people into an Irish pub after a memorial service. Type A personality right here too 😉

    A story I constantly talk about, mostly in the context of “hope” and how it comes in all forms is this:

    After my 1st or 2nd surgery (they all kind of blend together now) the nurse’s aide (PCT) came into my room to remove my catheter. Then, he shocked me with, “It’s time to try and get you up out of bed.” It took all my might just to sit up and swing my legs around to the side of my hospital bed. I’m a mighty, mighty strong woman, but I suddenly broke down hysterical in tears. I whimpered, “I can’t do it.” The PCT looked me straight in the eye and said, “If I didn’t think you could do this, I wouldn’t ask. I know you can do this and I’ll be right here to help you.” So, I wiped away my tears, took a few moments and stood up! It was one of the greatest accomplishments.

    So, I always use that example to teach/inspire/motivate others that sometimes the simplest things, like getting out of bed and just standing up means EVERYTHING.

    Thank you for sharing such a beautiful piece, and one that deeply resonates with me and my experiences. #brainsurgerybabes <3

    P.S. Once they allow volunteers back, I'll be volunteering with the Art Program at Rusk

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