For those of us living in the wake of a big diagnosis, how we define life, living and every day can be clouded by fear and misguided ideas of what it means to truly live. What I’ve learned is that life is not about what we are doing, but why and how we do what we have to for however long we get to be alive.
It has been three years since my last brain surgery. For the longest time, my life existed just between the space of hospitals and home and truly, I was most okay in that space. It became familiar and I was good at navigating it. I was a patient advocate and my doctors seemed to like me. In some ways it even became a comforting routine to know that my health was not in my hands and I could relinquish myself to the experts. Yet, as the years have crawled by, things have changed. My health and prognosis improved and I was thrust into the anxious space of figuring out what to do with my time outside of appointments and pain management.
In this vein, I recently went for a job interview for an academic position. This was exciting, not just because it’s difficult to get these interviews, but because it felt weird for me to apply for jobs. It feels strange to me to be well enough to look forward.
Termed a “campus visit,” these job interviews usually span several days and can cause even the strongest among us to give in to fatigue. The evening after my first full day of interviews, I could feel the full day of flying, the three-hour time change, the lack of sleep and the diminishing adrenaline washing over my body. I collapsed quickly in the bed, holding a careful posture so as not to wrinkle my business suit too severely. After about an hour of staring blankly, as the sun began to set and my hotel room began to darken, I figured I ought to get up, brush my teeth, wash the day off my face and go to bed. In the time I took contemplating this choice, the room had become all but dark.
Given the precarity of living with one balance nerve (a result of my brain tumor), I should have known better than to traverse the unfamiliar few feet to the bathroom without any light. I reasoned to myself that I would be quick — no need to fuss around to find the light. After all, my physical therapist had told me that my balance had improved. Just moments after I’d gotten up, I fell down.
I yelped, “No! No! No!” as I was falling, giving myself a warning a moment too late. My aspirational screams were not enough to stop my fall and as I threw my arms in front of me to block my head, I felt my neck whip back as my head hit something somewhat soft and unfamiliar. After a moment of surprise on the ground, I reached up and felt a bump protruding on my head. I felt my way up the wall until I could flick on the lights to find that I had hit my head on the arm of a fancy upholstered chair. The softness likely saved me from breaking the skin on my forehead but hitting the chair with my full body weight crashing forward had left its mark.
It wasn’t until I was admonished by friends and family after the fact for not going to the hospital that I realized the mark that fall left on me was much larger than the little bump I’d carefully combed my hair over the next morning. Everyone very reasonably explained to me that if I thought I had a concussion, I should be headed to the hospital.
“I will not go to the hospital,” I said defiantly, knowing in my mind I really meant that I would never go to the hospital ever again. I had been good at it, yes, and I had even maybe felt comforted, but the further I got from it the more I dreaded what I saw as an inevitable return.
Given that I had spent the better part of six years in and out of hospitals between brain surgeries and scans, I think it was confounding to me and others that I had a firm, ardent and fear-driven desire not to return to that space. I realized in challenging the people who love me on the merits of hospitals for head injuries, that I was letting my fear speak for me and forgetting that I lived an extraordinarily full life even while doing so in a hospital.
I spent the next few days upping my over-the-counter pain reliever intake, supplementing the OTC drugs with muscle relaxers and a careful balance of caffeine, physical therapy exercises and meditations. This drug and self-care cocktail was not one I typically needed daily anymore, but one that returned to me with the muscle memory of a runner returning to the track. I knew the exact amounts of pills to soothe me without debilitating me, to relieve me without numbing me, to make me better without making me sicker.
When I returned to my physical therapist after a week of travel, he noted that my neck and back were worse that usual. My alignment was off. My pain was worse and my balance that just a week before had been close to normal — a result my therapist could not believe given the ravages of my tumor – was wobbly at best.
He told me as much as the fall had impacted me, he thought the physiological manifestations in my body were from more than just a fall. The muscle tensions, the fear-like jerky movements that viscerally emanated from me without explanation as he attempted to soothe my sore muscles, the headaches — they were from the fall, yes. But more than that, they were the result of a frightened body going into a protective mode. “Your body is in fight or flight mode,” he told me.
I thought back to the nights in the hotel after a full day of interviews. I remembered the way the dark would drag on into morning, lingering just a little bit too long. I recalled the light trickling in through the curtains I never closed all the way. I could see myself peeling my body out of a tight ball, fetal position calling me to sleep, the light urging me to unravel myself from my protective posture.
After returning home and realizing that it was fear causing my pain as much as it was the little bump on my head and the little tumor that lingered in my skull, I felt sad for a while. I cried at the realization that despite years of progress, the true nature of my very real and diagnosed PTSD meant that fear and anxiety could grip me, particularly when stress, fatigue and a lack of routine had worn down the defenses I’ve built over the years.
After indulging my feelings for several days, I realized however that in looking forward I had forgotten about how present I had been when I was acutely sick. I had been firmly planted in my life, not out of a fear of what lay ahead, but out of a necessity to extract the most joy out of the life I was given, regardless of its duration on this earth. I remembered that looking forward didn’t have to mean being afraid of now, even if now is full of pain.
Shortly after my last surgery, my mom was diagnosed with breast cancer. She has endured great suffering and shown me great triumph. Going from my illness to hers in such a short time normalized the state of being in fight or flight mode — so much so that when, after just a few months of calm and doing the work to relax my body, I had to be alerted to my body’s return to a state of shock. This moment of shock while looking forward in a way I imagine normal people to do, reminded me what a privilege it is to look to the future, to set goals and to attempt to reach them.
Generally, I am fiercely present and I look forward not in decades, but in months that turn to years. I recently accepted a job with a three-year contract, and without hesitation I asked the people hiring what happens after three years. I realized in that moment that while I am so close to my diagnosis every day, I am also so far from it too. My fear is not trivial, nor is it ridiculous, and it should not be dismissed. People have recurrences all the time and the negotiations of lives with chronic disease are not easy. We’re all looking forward and backward every time we think about where we are now.
I live with constant reminders of what I lived through. I have no hearing on one side: a fact that gets named daily. I have a constant and loud ringing in my ears. I often fall or run into a wall, and laugh it off as the hilarious hijinks of the clownish character I fashion myself into to get through the hard stuff. I have physical pain every day. I have emotional pain every day. I still get up every day. I talk to my fear every damn day. I quell the anger and burn away the sadness, so I can go to work and live in the world of the living-every-day.
I used to tell people it wasn't brave to try to survive, that it was the only choice. After doing it for three years though, watching my mom do it and watching our family survive all of it, even as we feel the joy and the sorrow of our lives, I’m not convinced I was right. It is brave to try to get through all of this. And survival doesn’t have to mean going back to work or even living through the disease: to me, survival is being in your life while you have it, however long that is. Survival is feeling all the feelings that come with the precarity of a life that is defined acutely by mortality — I mean really feeling it, living it, learning it, touching every texture of it in every environment from the hospital to the home. That is what it is to survive: to live in the fear, to live despite the fear and to hope like hell you get to do it again tomorrow but know it’s okay if today is all we’ve got.
If that's not damn brave, I don't know what is.