Two Years Post-Brain Surgery
Here’s what it feels like when I have a seizure: I start hearing a woman’s voice. Sometimes it’s an elderly Russian woman, sometimes it’s a younger woman, but in all cases it is a caregiver to a young boy. I cannot make out what scene is being played out in my thoughts, just a familiar observation of someone correcting a little boy she is babysitting.
For the first minute or two, I am convinced that I am thinking about the scene, remembering it. And then as it takes over my thoughts and brain completely, I relent and recognize. This familiar cast of characters means that I am having a seizure.
It’s best if I let it wash over me, finding a quiet place to close my eyes and let the voices and scene get louder until it ends. It only lasts a few minutes. I never lose consciousness — rather, my brain is hijacked and I can’t focus on much else. I am able to physically move around, even talk to others, but the scene is on the tip of my tongue and the rest of my life is peripheral.
Apparently, when you have brain surgery, it’s possible that a tiny bit of scar tissue is left behind. My tumor was right next to my auditory processing center and my memories. As a result, every few months my brain wigs out, realizing that the giant brain tumor it once knew is gone. And that’s when I have an auditory-related seizure.
There is no way to predict it, there’s nothing that brings it on, there’s no food I could cut out of my diet to stop it. My instructions are that I can only have two drinks of alcohol, I must prioritize good sleep and I can’t take a bath if no one is home. All things considered, it’s the best of the worst case scenario. But as a person who often speaks publicly for a living, I can’t say I don’t think about seizures before I walk on stage.
Life has returned to a new normal. My work is blooming. My family is solid. My health (except for seizures) is strong. If you would have told me on the day of diagnosis what my life would look like in just two years, I wouldn’t have believed it could be this good.
Here’s what has helped:
- I ask for help. The biggest lesson I learned through recovery was that I cannot do it all alone, so now I don’t. I have no shame asking a friend to watch my kids if I have a work obligation, I set up a Meal Train for my own family during an intense business class, I order groceries if I’m in a pinch. I do this from a place of complete peace, knowing that I, too, am a contributing member to society and my community. Which brings me to my next point.
- I offer help. For a while last year I was the queen of Meal Trains. My sister has a baby? Meal Train. People at church having surgeries? Meal Train. I’m not even a great cook! But I understood that it’s truly the thought that counts during some of life’s wackiest moments and I’m happy to show up at a stranger’s house with food in hand and a breath of fresh energy. It makes me feel useful and in this way, I understand that asking for help creates an opportunity for someone to exercise their own value.
- I take risks. Every single time I’ve felt daunted by something at work, nervous about a new haircut or shy about pressing publish, I remember: HEY, THIS ISN’T BRAIN SURGERY. It’s amazing how grounding that is. Life is a giant science experiment and I’ve learned to play with it rather than inherit what it gives me. Loosen up, get your nose pierced. I did!
- I look for the dreamers. There’s a famous saying about how you are the average of the 5 people you spend the most time with and I think about that often. I want to be the average of people who are modeling fantastically-lived life, for however long they’ve got it. So the past two years has also been about changing what I’m reading and consuming, building community based on this thought. No matter where you are in your health journey, you’ve got a limited amount of time left. Spend it with people who astonish you.
- I made peace with death. I didn’t think much about dying before brain surgery because I wanted to go in boldly, without fear. But much of the mental repercussions afterwards were related to the indescribable realization that I could have died and left two young boys and a young husband behind. This still moves me to tears regularly. But by facing that prospect and thinking about it so tangibly, it isn’t the threat it once was. One day I will die knowing I have lived as fully as possible into the edges of a woman called Jen Dary. I want to press my life into those I love for as long as I have it… and then let go.
I’m 37 but I’m also 2 years old today. I’m grateful to be alive and I’m also ridiculous and spontaneous and I need naps. 37 and 2 is a fun blend to be.
Thank you to everyone who has supported (and continues to support) me and my family through it all. I love ya.
Previous brain tumor-related posts:
