Melissa: “Hey, I’m getting really hungry…”
Christine: “Dinner after she wakes up?”
Melissa spots a chocolate chip cookie sitting on my table from the morning, picks it up, and proceeds to eat it.
Christine: “Hey, maybe Deb wanted to eat that cookie when she woke up!”
Melissa quickly finishes the cookie and laughs sheepishly…
Melissa: “It’s ok. She won’t remember it.”
Christine (laughing): “Nice!”
I did not remember the cookie. In fact, there had been a cookie a day in the ICU, and I hadn’t eaten a crumb of any of them. No, that had been the responsibility of my crew while my mom and husband Kurt watched on worriedly. Growing up, that crew (my inner circle) consisted of my three younger siblings Christine, Mike, and Brian, and my first cousin Melissa, so it wasn’t surprising to learn that Melissa and Christine were by my side in the hospital too. They’ve always had my back and vice versa. Womb to Tomb Baby! Our tribe knows that anything is possible if we stand together and, above all, keep a sense of humor. Excluding neurosurgery, laughter is the best medicine, and if you can’t laugh at stolen cookies, you’re not ready for an AVM.
So where was I? Ah yes, gallows humor in the time of crisis. Why would my ICU stay be any different than a Saturday cookout? Humor, quick wit and sarcasm are the building blocks of my people, and I’m no different. Some would describe me as always up for fun, always on. Whenever I’m spewing hilarious stories, chatting with the lady in Trader Joe’s at a mile-a-minute, it’s known as “Full On Deb.” I supposed I use the term as a bit of a self-defense mechanism now, after the AVM, but I’m pretty sure I earned it too.
This July I’ll celebrate my 10 year Brain-a-versary! I still can’t believe that it was 10 years ago that I suffered a brain hemorrhage and, against all odds, survived. I have my own war stories, such as, how until that fateful day, I had no clue that an AVM was twisted inside my brain and ready to rupture. Or how I have absolutely no recall of those 13 life-altering days I spent recovering in the ICU afterwards. Seriously, not one moment of it. Being airlifted? Nope. Non-stop brain drains for two weeks? Talking with my extended family who flew out? Finally being reunited with my kids and hugging the stuffing out of them both? Nope, nope, and nope… not even a minute of it.
After returning home to Wisconsin, I was beyond thankful and couldn’t wait to settle back into my stay-at-home-mommy-life. I craved normalcy, not as “Full on Deb” then. I’d become painfully aware that the brain and its recovery are a tricky and painfully slow process. I was struggling to piece together my AVM story and began relentlessly interviewing family to get the blow-by-blow of what happened.
Was I really airlifted to a hospital?
Did they actually drain my brain for over two weeks?
Was I in a lot of pain?
What did I look like?
Was I talking a lot like I normally do?
Did I sound like myself?
Was I still funny?
Did you think I was going to die?
After bombarding my poor husband with these few hundred questions, it was that last one that drained the color from his face. Suddenly I realized that although I may not remember any of it, my husband who had never left my side, who’d seen it all, he remembered every single moment and there hadn’t been a cookie story to lift him up. Rather, this had been massive. He couldn’t rely on gallows humor or quick wit and sarcasm the way I’d supposed. Standing together in our kitchen, I realized the enormity of that and I started to cry for him. I cried for everything he had endured, for how my need to know wounded him now, and for the absolute blessing of my survival. I realized that in my AVM-induced amnesia, I was the lucky one.
With this newfound understanding, I was especially excited to learn that my cousin Melissa would be coming over for an afternoon visit. I looked forward to seeing her smiling face again, but I was still hoping to fill in more details about my ICU stay. When Melissa showed up for her visit later that afternoon, she retold what is now one of my all time favorite “AVM stories,” a longer version than that which starts this column. While they weren’t my memories, I knew this story and she recounted familiar scenes: afternoons at the hospital where my husband and our out of town family would take turns sitting with me, visiting and chatting to fill up the time… this same group taking my mind off the dreaded but necessary “brain drain” or the ever-present tube attached to my skull. She repeated the part about how I hated it and would often try to remove the tube. Melissa continued, adding that my visitors’ steady stream of conversation, family gossip and goofy banter helped distract us all. She ended by reminiscing how on the 3rd afternoon, as I lay sleeping, much-needed laughter found its way back into our days in the form of a delicious chocolate chip cookie.
Melissa laughed then, a laugh I hoped she’d laughed that day in the ICU, and said that “Hell Yeah” she ate the cookie; she’d eaten all of the cookies. As I relaxed into the sofa, enjoying the story more fully than ever before, I smiled my first fully contented smile in months. I understood that these stories would become my memories, that they already were, and that despite the AVM amnesia we were always going to tell them because they were a gift. As they became part of me, I accepted that I would eventually return to being “Full on Deb,” and that this was a gift too.
Click on the photo to learn more about Deb Toy Benzel