Living With Uncertainty as a Brain Tumor Survivor in a Changing World

A brain tumor survivor explains how she chooses to approach life with acceptance of the hard times rather than trying to throw them away.

It’s hard not to want to shut out the bad to hope for the good, but what if we learned to live with both and were all the more present in our lives because of it?

Between the lumps and bumps that everybody inevitably develops and the aches and pains that are both markers of the trickle of advancing age and decades of chronic pain, it can be hard to sense what’s what in a time of global catastrophe. Are my day-to-day feelings in my body marks of a returning disease or diagnosis or am I just a person living in a body that is imperfect?

I read the COVID-19 symptom checker on Google the other night, as the advancing omicron variant has me terrified to layer COVID-19 on top of brain tumor survivor with possible spinal fluid leak.

I woke up on my 36th birthday with a sore back, a dry and scratchy throat and fear in my mind. When I went to the symptom checker and read symptoms like body ache, soreness and dizziness and thought about the massive amounts of pain and imbalance I’ve learned to live with, I wondered glibly to myself, “How would I ever know if I’m sick?”

My husband is in recovery from a major spinal surgery. My mom is a cancer survivor. I have family members in chronic pain, others who are immune compromised. My family, like many families, manages sickness as a (routine?) part of day-to-day health.

Perhaps not routine to many but the privilege of impeccable health is not lost on us, so we’re careful. We don’t have the privilege to skirt caution to live as we did a few years ago or before pain gripped us physically or emotionally. We don’t needlessly gather due to COVID-19, saving our measured risk for precious family celebrations, hiding our smiles beneath whichever masks we’ve been advised to gather and wear at a certain time.

I used to live my life on that strange teeter totter of sick and well. You are either one or the other — that was my understanding from growing up in a world of socially constructed understandings of what good bodies do and look like.

When my body stepped out of this frame of normal, I was relegated to the sick side of things. But as we enter a third year of uncertainty at work and school with the pandemic, I realize that the uncertainty has been there for me and many people I love for a long time.

I also have come to recognize that this uncertainty doesn’t have to unmoor us in the ways it most certainly can. Though I must tread carefully through my physical world, mentally, emotionally and spiritually, I try to see the uncertainty as possibility.

I once had a pain meditation that didn’t falsely promise me that I would get better — instead it told me that we did not know how long this pain would last. It taught me to release my desire for a known outcome, for control.

Just like the common refrain from my father that “the only constant is change” and the words of a dear friend that “this won’t be this way forever,” the uncertainty reminds us that while perhaps disaster is looming, perhaps possibility is looming too.

I won’t ever not have the symptoms of my tumor, even as it appears to have become a shell of its former self in a corner of my brain. I will have fatigue, I will be dizzy, I will not hear well (or at all), I will contend with a pain that becomes more uneven the further I get from my days of surgical intervention.

I don’t know if that makes me sick, and I don’t know how to answer old friends who lovingly ask if I’ve recovered, gotten better, or if I’m well. The answer is always a yes and a no and a shrug and a moment of gratitude for my life and their care. I am well, but I am also tired and achy and maybe a bit busy.

I think we need a more capacious way of looking at our bodies than just sick or well. People are more complex than this duality we trap ourselves in. It’s a new year and I hear a lot of admonitions of the last year and a cautiously hopeful welcoming of a new year. I see people wanting to let the light in and forget the dark. I’m finding this too traps us in a similar duality. If we shut out the days, weeks, months or years of darkness we also shut out all the moments of joy, laughter and possibility that come in between those moments.

I was diagnosed with a brain tumor in 2012. At the end of that year, I wanted to release the events of that year to focus on a new and better one. But the fact is, I did more in 2012 than get a brain tumor. I loved my family, I learned how to be my own best support in my first year of grad school, I loved, I lost.

I spent the next five years in and out of the hospital and heard the same common refrain at the end of every year — that the new year would be better. I came to terms with the fact that so much of my life might need to be lived between doctor’s appointments and surgeries, so I decided to stop yearning to let years go and embraced what they were — even when they were punctuated with grief and loss.

I’m not advocating a toxic positivity, rather, a recognition that life can be relentlessly hard but that doesn’t mean we throw it away. And I know that most people aren’t truly tossing out their memories of the past year in favor of a new one, but if we spend our lives chasing a moment that is easier, calmer and less uncertain, it may get here but it may not.

After years of my own illness and watching family contend with pain, illness and loss, I’m not pining for a year with no pain — though it would be most welcome — instead, I’m trying to grab whatever joy is in this life, because it is the only one I have now.

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