On This Day 4 Years Ago: An Excerpt From My Craniotomy Diary
October 18, 2019
I’ve been trying to settle on the perfect image to caption this experience for over a week. One that says, “I just had random, emergency brain surgery and I’m literally a new person now!” But everything seemed cliche, so I settled on the imagery that drifted me off to sleep during surgery last Thursday.
Whenever I’ve seen anesthesiologists portrayed in movies, they’ve always asked patients to count backwards. But the pros at Penn put thoughts of my children in my head during that time of terror. I remember thinking about how brave Cameron was for going down the slide unassisted for the first time, just one day before a random seizure that would lead to a lot of tests and processing. So much processing.
As scary as it was, that Monday morning seizure 11 days ago was perfectly timed. I had some random left hand twitching the evening before, but Google had me thoroughly convinced my hand spasming was normal and likely due to my obsessive need to weed the garden for hours to make up for a season of neglect. I went to bed Sunday night with an unfamiliar feeling of panic and dread, but my iPhone soothed me to sleep. I woke up in the morning and threw myself to the floor, screaming “ow,” so my partner would wake up. I experienced a 2-minute long grand mal seizure, which was mostly an out-of-body experience that I remember vividly, despite loss of consciousness.
I saw myself from above, my calm partner keeping me on my side, calling 911. I felt helpless and totally loved all at once.
I also felt lucky, even in that moment, because I knew that if it had happened just an hour later, it would’ve been my “Funday Monday” with the kids alone. I could’ve been driving us to my in-laws. Or showering. But it all lined up so I could live to write overly-personal social media posts like I always do. And see my kids grow up. And watch the way my husband really relaxes after a rewarding day of accomplishment.
That’s something I mentally prepared to have taken away for a week of surreal processing. Watching puppy slideshows at an ICU wing, the only place the hospital had room for me, where there was one other patient on the floor most days. Doing my best to banter with hospital staff during IV fluid drips and CT scans/MRI transfers all hours of the night. Joking about how, “Could you believe I got my period and broke my new fancy retainer this week too?” It was my attempt at doing “a bit” because humor is everything to me and makes me feel safe and in control. Plus, period jokes are always funny, right?
During tests at Abington Hospital, prior to my whirlwind of a transfer to Penn, I wasn’t being given much hope or confidence. Brain cancer seemed likely and seeing my children again did not, at least that’s where I was living in my head. Thanks to pure privilege and connections, and I suppose advocating for myself, I transferred to Penn (after the smelliest, most McDonald’s-fueled, midnight ambulance transfer), with my brain literally in the hands of a top neurologist within less than 24 hours. He had a competent staff with a game plan, we met all of 12 minutes, and I fully trusted him with my valuable Real Housewives brain juice.
Since the lesion on my brain was smaller than a tiny piece of lead, and basically tentacled onto my left-hand and lower arm motor skills, I knew I’d likely lose functionality for weeks or months. I was prepared for that. It would be finnnnnnne. I woke up from surgery (what we thought would be 6 hours would only take 2), told my family and partner they could promptly go home in true eff-you Shannon fashion, because I was finnnnnnne (and maybe just a little drugged).
I woke up hours later, whisked into a post-op MRI, feeling the effects of the drugs fading, but not the sensation of my left hand or arm. It was totally asleep, pins and needles, but felt like a heavy weight. Coherent enough to overhear the ICU nurse talking with her colleagues about whether hiring a second photographer would be worth it for her wedding day. Calling her in to check on my catheter under the guise of letting her know my professional thoughts (pretty sure she thought I was still medicated, but totally get that second photographer if you can!).
Those next hours and days were the scariest. I had a legit brain drain hanging from my head that even Cher from Clueless could not make cute. I clung onto my humanity, trying to change my sanitary pad one-handed, but hospital pads are the literal least sticky contraptions on the planet. I was a sight and the staff couldn’t have been more patient and kind. I got to know my roomie, an 80-year-old NICU nurse with 6 kids who shared her terror of losing them at 5am under the purple glow of the cityscape outside. Perfectly blurred and surreal, because I couldn’t find my glasses.
It was a foggy dream of vulnerability, sadness, pain, and love I’ll never forget.
I came out of the dream, just two days after a craniotomy, released back into the wild of my own Abington abode. My shaking dog on my numb arm, just waiting for results. Luckily the pathology report came back incredibly fast. My doctor called Monday to let me know it was the best possible outcome—a random infection. No sure cause…uncleared UTI? Dental procedure? Sinus infection? Random travel souvenir? We’ll likely never know! But we can treat with a small course of antibiotics and it’s gone now.
My life suddenly went back into seeing color. My kids were home already before that call, but I wasn’t letting myself truly see them. Of course I soaked up any time with them and loved every second finally seeing them after almost a week. But I didn’t want to get close to them, only to have it ripped away. It hurt to see their new milestones up until that call. I didn’t think I’d get to participate in any new sign language skills, potty training wins, yoga poses. I was terrified that was it. No more Target tantrums or babywearing trips to Trader Joe’s, where well meaning shoppers would tell me how blessed I was when I already knew.
That call changed me. I still can’t bend or lift over 5-10 lbs for 5 weeks. I probably can’t drive for 6 months. I can’t play Colors of the Wind with my left hand just yet. But I can live and I can do my best and every day feels like an over-the-top gift from Oprah.
Last night I paid sales tax with absolute fucking glee. I killed a centipede this morning without a drop of fear for the first time in my 35 years of existence.
I feel like I was already grateful about my life, friends, work, and family, but it’s on another level now. I am still obviously in recovery and have a fashionable Halloween-themed headband of 19 staples for the next week, but I am here. I am weaned off the meds for brain swelling that made it feel like I was racing around while sitting still. I have to take anti-seizure meds for a while and it’ll take some occupational therapy to be able to snap my left fingers the next time I’m at a poetry slam, but I’ll get there soon. I have no doubt I’ll be taking photos of Cameron’s 16-month milestones.
I’m confident a lot of that has to do with all of the support from you. So thank you. Seriously. I’m going to fill the shit out of a gratitude journal and take things day by day. Journaling and writing (and therapy, y’all) will be such a big part of healing for me. I’m by no means Brene Brown over here, but processing and talking (and spamming on group chats) helps immensely. So thanks for listening. Love you, mean it.
October 21, 2019
A week ago, I couldn’t move my left hand. It was stuck in the same position, unable to stretch my fingers apart. Unable to swivel my wrist. I could barely differentiate the sensation of hot vs cold on my arm when the occupational therapist tested. When he jabbed me with the tip of a key and my eyes were closed, I was guessing if the surface was dull or sharp. When I looked down at my skin, it was dented. From my upper arm to the end of my ulnar nerve, it was a heavy weight. It felt fast asleep and tingly. Lifeless. If I tried to touch my face in the shower, I’d accidentally hit myself on top of my head. If I tried to play piano left-handed, the weight of all five of my fingers would smash down.
I didn’t know if or when I’d get to appreciate things I took for granted. Like putting my hair in a ponytail again. Blowing my nose. Typing two-handed. Steadying the weight of my camera, while selecting the focus with my left finger on the back LCD screen. This morning, I’ve done all of those things, just one week later. Not perfectly, but I did it. It felt so good to take photos of leaves, while condensation fogged over the fence. I have more occupational therapy ahead of me, to work on isolating those fingers, but I’m so impressed by how our bodies heal. How my wrist and hands are still numb after my craniotomy, but I am getting there. Once the limitations of no lifting/bending are gone in literally one month, I’ll be back to working with clients and soaking up every last bit of this crisp air.
October 23, 2019
I love that my subconscious has already started forming quirky, sitcom-worthy wedding nightmares, where my mother drives me to my gigs, playing The Carpenters’ Christmas Portrait on repeat. The surprisingly, climactic conclusion was that I forget a winter hat, so we had to rush around a college campus together, trying to buy a last-minute beanie, as to not distract guests with my staple head.
*Luckily the staples come out in 2 days and Lyft exists, since I’m mailing my license back to the DMV today, because they take it away for 3-6 months after a seizure.
Aaaaaand, now I’m one of those boring people who thinks their dream was interesting enough to share with others.