I started reading The Opposite of Certainty, a memoir by Janine Urbaniak Reid, because it’s another story about someone with a brain tumor. This time it was the author’s young son. I’m an astrocytoma survivor and I think I’ve read every book there is on brain tumors trying to find myself in the story. Even as I tried, I never quite found the same story, until now.
Maybe the person I read about didn’t really have a brain tumor, but had cancer instead. Or maybe they had a stroke, like my dad, who acted like a different person after his brain bled and gave me insight into what my life might have been like for me had the doctors not been so skillful when removing my tumor. But this time, as I read The Opposite of Certainty, though the details still remained different, I was seeing my story.
Mason’s Story Could’ve Been Mine
The first indication that something is wrong with Mason, the author’s second of three children, comes when he is eight years old and begins having headaches and a tremor in his hand. The family only discovers the cause two years later after many doctor visits, having been told tremors are normal and receiving treatment for headaches. That is when an MRI reveals a slow-growing tumor.
The family grapples with advice from numerous doctors, some who say the only solution is treatment, others who say the only solution is to wait and see if the tumor grows. The family chooses a little of both, waiting and consulting a whole bevy of professionals from herbalists and nutritionists to a chiropractic neurologist and a Qigong master and then later choosing a course of chemotherapy. Once it seems as if everything will be okay, at age 13 the tumor bleeds, leaving Mason with brain damage.
This isn’t the first time, but it is the major way our stories diverge. Although we shared the same type of tumor, a pilocytic astrocytoma, mine was only a pea, not a lemon, like his. I was initially told that I wouldn’t need surgery right away, but within hours that changed, only because I was going to be off my parent’s insurance in a few months.
I had been having symptoms for much longer, but had hid them until my college roommate made me tell my parents. It turned out I had been having seizures for eight years. I also had headaches like Mason, and still do, which I now know are migraines, but have had very minimal issues since my tumor resection.
The Future I Pictured
The big difference is what comes next. After his brain bleed, the family is not even sure Mason will be able to open his eyes. When he finally does, it with a look of nothingness. He eats through a tube in his stomach and must learn to walk and talk again.
While I did not live this life, this scene is familiar to me. It is the existence my dad lived after his stroke. After emergency surgery to remove pressure and blood, his brain was severely damaged too.
Through time Mason makes great strides, he does not return fully to the person he was, suffering from memory issues. Urbaniak Reid writes:
When I look at Mason I see his life split in two. One life looks the way it should have been (the way I planned it). The other life is how it’s unfolding.
The Opposite of Certainty
When I read that I feel the way I did when I saw my dad. Except the split is between the two of us. On one side I see my dad and he looks something like himself, but mostly lives in his own world. On the other side, I see myself in a dusty day room, someone feeding me, and reminding me not to get out of my wheelchair because I might fall.
Seeing the two worlds, I finally felt the weight of what happened seven years before. I wondered if I had caused what had happened to my dad by not learning what I was supposed to from my own brain trauma. It didn’t make sense that I had been spared while so many others weren’t.
Reading Mason’s story, I thought the same thing, again. Why do some pull through unscathed and others go on to live as new versions of their selves? Urbaniak Reid often asked “why?” as well and was learning to stop asking that question.
She says, quoting one of Mason’s doctors, “There are some things that can’t be known.”
I can imagine that this book brought back a lot of memories for you.
Sending big hugs from across the pond! x
Thank you for this book review. My brother suffered a stroke 15 years ago as a result of undiagnosed diabetes. I know my mother struggled with feeling like she should have seen the signs and prevented it… It is so hard to know who they were then and see who they are now.
My mom passed away this year and I am now responsible for him. How to understand his brain injury? How to provide him with the best quality of life? It had not occurred to me to read books about it… Dumb, I know. Again, thank you for this book review.
It’s so hard when you’re in the middle of it. Thinking of you, sorry for the loss of your mother. ❤️
Catherine, thanks for another great book review. I, too, read every memoir I can find on brain tumors, looking for a story similar to my son’s, and, like you, looking for me in their story. The Opposite of Certainty sounds close – my son’s symptoms started at eight, there were several years of “it’s normal” before an MRI discovered the tumor, which was also a pilocytic astrocytoma. (And I didn’t know that’s what you had!) And then, wow, what a split in plotlines. My son has some residual impairments, and he’s not who he would have been, but he’s doing amazingly well. And I ask that question with no answer – why was he so lucky? I’m going to buy the book, and look forward to reading yours someday.
Karen- I was thinking of you when I read this book. I can’t wait for you to read it.
It must have been a hard read for you. But we can often wonder about the ‘what ifs’ it won’t change what happened. I too have a bleed on my brain, but it’s very minor and not a tumor.
Hi Anne- Yes, the what if’s can be all consuming if we let them. Thank you for reading. I hope you are well.