A Brain Tumor Survivor’s Diagnosis Dilemma

A major diagnosis often forces us to shift the way we approach our lives, even once we’ve survived. So, what does it look like to chart a future having suffered in the past? And, how might we look forward?

I was recently lucky enough to talk to my mentor about my future.

I got to talk about my future. I’m not great at talking about what might happen or what could happen because I never really assumed I’d have a future.

My brain tumor was pretty straightforward, no one actually thought it would kill me, but all the complications it dropped into my lap and my 10 subsequent craniotomies meant I was a woman in my late 20’s facing down the loss of my unknown future. And at that stage of life, while I was immersed in that season of illness, I was comfortable with that. I wasn’t happy about it, not at all. I hated it, but at my most precarious health moment I called a friend and said, “I don’t want to leave this world and I’m not ready, but if I did, I know that my people knew I loved them. I know that I tried my hardest in everything I did, and that I did what I could do to be in my life.” Luckily, that didn’t come to pass. I got to live more; I get to live more. I am so grateful for that.

I was OK not knowing the future at that point. My fragility was all I could devote my energy to anyway. But, as soon as I was told I was well enough to return to work, to life, to activity — to return to the world of healthy bodies that seemed to universally feel guaranteed a future, I froze.

Now, years later as I settle into the comfort of adulthood, I am facing a precipice. I need to decide things about my family and if it should grow, I need to decide on career directions and options, to decide on what to save and how much. All these decisions are pointing so clearly toward a future.

My chronic illness and the traumatic ruptures of a decade punctuated by brain surgeries did very little to train me for this moment. Being so ferociously sucked into a space where all I had to do was survive made it more challenging for me to embrace mundane yet important decisions. Recently, I spent weeks roiling over simple yet important decisions and options because I could not fathom these many options being available to me. I couldn’t imagine the possibility of a future.

It seems illness, once it’s settled into your life, makes wellness a challenge to understand and confront. It seems that the longer you live precariously, the harder it is to recognize safety. I have had three stable scans in three years and yet, as each scan approaches, I feel a drop in my gut. I feel trapped somewhere between that woman who, upon facing her ultimate vulnerability, decided to find contentment in her life and the woman who exists now who, while wise, cannot see the forest for the trees. I am simultaneously the person content with the life I’ve lived because of the love I give and the person who feels massively confronted by basic decisions that could in some way jeopardize my future. The future I wasn’t promised, the future that feels like such a gift, I am too wary in diving in, for fear I might squander it.

I suppose finally having been given the option to live has made me absolutely terrified to screw it up. I guess the answer lies less in living perfectly but finding the middle between the competing poles of my mind. To be content with the life I live but to know that it’s OK to plan for a future. It is OK to dream and yearn and want and even, dare I say, advocate for the future I want. None of our futures were ever promised to us, it’s just that now I know that deep in my bones. So I’ll be planning my retirement, and mapping my career, and trying to grow my family - and if the universe has other plans for me, well then, plans change.

I got to talk about my future yesterday and it was really scary. I felt the fear in my gut and in my shaky hands but in being willing to even have that conversation, I acknowledged that part of being here now, part of surviving my diagnosis this long, means straddling the past and the future and trying like hell to remain fiercely present. So here we go, onward my friends.

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