Certainly, it’s natural to fear the unknown. So, I do have moments of dread at what’s to come – usually when I wake up in the morning. But recently, I’ve had periods of not feeling afraid.
Maybe it’s because my date in the OR isn’t set yet, but I’ve also begun to reflect on the idea that I can welcome surgery. It’s going to help me heal and perhaps shift my path back towards my pre-diagnosis normal. Yet even in the moments I feel confident and relaxed, there’s a voice in my head telling me I’m supposed to be afraid.
Basically we’re afraid of everything in America: immigrants, minorities, gays – pretty much anyone that’s different than us. We’re afraid of things that have little mathematical risk (like terrorism) and less afraid of things that do (like heart disease).
I think the voice in my head is the echo of our culture of fear.
Why when faced with brain surgery is the default to be terrified rather than confident in my highly trained neurosurgeon, and grateful for the teams of supportive, caring professionals that will watch over me?
Fortunately, I have some familiarity with this subject. My history with surgery goes way back beyond memory.
I had a major hip surgery as a toddler; I don’t remember any of it. At age five, I had a tonsillectomy. A nurse came in beforehand to ask me where I wanted my shot. I pointed to my penis, and then in response to her annoyed frown, clarified that I meant the opening of my urethra – a place the needle wouldn’t hurt. Frankly, this may be the earliest example of my creative genius. She jabbed me in the butt. The last thing I remember was lying on an operating table with a handful of adults in green scrubs hovering over me, like in The X-Files, as one asked me to take a few breaths into a mask.
The irony of the fact that I’ll be catheterized for the first time during my brain surgery is not lost on me.
Since then, I have had quite the range of surgery experiences. I’ve canceled dental surgery due to the fear of being “put to sleep”. I’ve undergone hypnosis to help me prepare for shoulder surgery; the suddenness of waking from general anesthesia arrives with a sense of lost time. My yoga training made a recent knee surgery feel much more manageable, though when the surgeon asked me how I was doing, I told him I was nervous. “You wouldn’t be human if you weren’t,” he replied. It was more reassuring than I expected when he initialed the correct knee.
By and large, all of these past surgeries were very good to me. But brain surgery feels different. The opening of the skull, which clearly evolved not to be opened, exposes the center of our thoughts and our consciousness. The risks are higher as well. The possibility of stroke, disability and death feel, well, larger than life.
Here are my main concerns: How will I be able to give up my last pre-surgery moments to go to sleep the night before? What will it be like to ride to the surgical center, sign the final forms, change into scrubs and sit through the pre-operative preparations?
In “My Summer Brain Tumor“, Rebecca Kurson (who had a similar tumor to mine) describes this period: “My husband takes me to the hospital at 5:30 a. m. and within an hour I am alone and being prepped for surgery. As they put me under anesthesia, I lose control altogether and scream, ‘I am so scared!’ It is the last thing I will hear with my left ear.” Reading this made me viscerally uncomfortable; it shook my confidence and left me overwhelmed at the prospect of handling that level of fear.
A yoga teacher of mine whose husband has had many surgeries said that even our primal survival instincts react in these moments.
My friend Jeff Harris basically had to be cut in half for his 17-hour surgery. At the time, I wondered how he could face it. Now I understand a bit about this: the alternative to surgery sucks worse. It turns out that the answer to how people rise to the challenge of these kinds of surgeries is that they are the best – or only – choice.
People say that I’m brave. I’ll own a bit of this, but frankly not having surgery would be much scarier. Both Kurson and Harris knew they would lose significant functionality in their surgery. I only will if there are complications, which I’ve been told are unlikely.
As a technologist, I’ve never wanted to manage software projects responsible for people’s lives, like for astronauts. At first, it was hard for me to understand how my neurosurgeon handles the intensity of operating on someone with so much at stake. But now, I think I do.
When she first examined me, she instinctively touched my face to see if I had any sign of nerve damage and quickly apologized for not asking first. In our second visit, she began to trace where she would make the incision and which part of my skull she’d remove. “Sorry,” she said again. “You don’t have hair. It’s going to leave a scar.” I sensed from her eagerness in these moments that she’s drawn to work on people’s brains and loves what she does. Far from being nervous while operating on me, she’ll be in the zone. This deeply reassured me.
For many years, I’ve been afraid of heights yet fascinated by movies about climbers and extreme sports. A couple of great mountain scrambling instructors took me under their wing a few years ago and taught me that to manage my fear, I needed to focus solely on the next step in front of me. With this simple guidance, I reached a summit I’d turned back from weeks earlier.
A couple of times since my diagnosis, I’ve let myself shake and cry over the intensity of this past month. But when I notice myself getting mired in anxiety, I recognize that there’s little to be gained by dwelling on the fear of the future right now.
In yoga, this is called staying in the present moment. It’s reassuring when diverse disciplines like yoga and climbing reveal the same fundamental instruction.
As I wrote earlier, focusing on the breath in yoga is the first step to calming the mind. Someone recently told me, “You can think about the past or the future but you can only breathe in the present.”
A friend compared my journey toward surgery to managing the challenge of a difficult yoga pose. Her teacher once asked, “What would you need to adjust in this pose to stay in it for 100 years?” Staying relaxed and confident as I navigate my diagnosis and pre-operative planning is very much like the practice of finding the appropriate balance of effort and quiet in a difficult posture.
Laughing helps. A friend suggested we make a list of the qualities I should ask my surgeon to keep safe (my excellent parallel parking skills) and those she should remove (always choosing the slowest line in the grocery store).
Gratitude is important too. Last year I traveled to India – an experiential gift of being in a culture that prioritizes living in the moment. In Varanasi, our group had to suddenly press to the sides of a narrow alley to make room for mourners carrying stretchers with delicately draped bodies to the Ganges riverbank for cremation. Beside me, my yoga teacher said, “Be thankful for the gift of your life in this moment.”
We also spent time at an orphanage in Tiruvannamalai with children who are HIV-positive; “Tiru” is a spiritual center beside Arunachala, the mountain where yogi Ramana Maharshi lived after experiencing enlightenment at age 16. The children immediately latched on to my camera to take pictures of each other, thrilled just to take photos and have visitors. It was difficult to leave them and heartbreaking when they asked us when we would return.
The truth is that I’m tremendously fortunate to have lived a life of relative privilege and security. I’m grateful that my brain tumor is operable and treatable, that I’m insured and don’t have to worry about money on top of everything else. I’m appreciative of modern medicine, that there are teams of people who work every day to provide great care and a neurosurgeon who enjoys holding people’s lives in her hands and fixing their brains.
A big part of this process for me is the willingness to surrender: to discomfort, to some amount of pain and to the acceptance that my health afterward may differ from what it’s been until now.
Through yoga and counseling, I’ve trained to sit with my feelings and invite in the full range of my emotions. I’ve become familiar and confident in the refuge of a calm mind through repeated experience that begins with observing my breath. It’s spiritual for me.
But on the morning of my surgery, I may still cry. I may tremble. I may scream. If directed by the flight reflex of my lizard brain, I may run. I hope it’s someone’s job to block the door.
Ultimately, in the moments leading up to my surgery, there will be so much more than fear to focus on. There will be profound intensity, curiosity, hopefulness, gratitude, trust, eagerness, great care, an opportunity for transformation and a lot of surrender. I’m even a bit excited for the prospect of better health. I will focus on fear and all of these things.
If that fails, I’m told they will give me drugs.
My friend Karissa signs her emails, “Love is what is left when you’ve let go of all the things you love.” I have come to understand that no one is promised anything in this life and I’ve been given so much more than most.
When I wake up from my deep surgical sleep (with a “headache”, I’m told) I will be so grateful for the gift of waking and for every opportunity that follows. If in the less likely scenario I don’t wake, or there are complications, I am trying to be okay with that too. For now, I’ve made reservations to return to India later this year. We’ll be visiting another orphanage and perhaps I’ll find my way back to Tiruvannamalai.