Brain Injury: The anomaly of my story.
I almost missed it—National Brain Injury Awareness month, recognized in March.
Maybe it wasn’t on my radar because I don’t talk much about my son’s brain injury; I talk of the brain tumor–a pilocytic astrocytoma–that caused it. They are intertwined in my story, the tumor in and the injury to his brain.
Not much of my story falls neatly into predetermined categories. Our whole rumble with a brain tumor, diagnosed when Matthew was 11, was an anomaly; it was never black and white, always shades of grey, like brain matter. Before and after his diagnosis, Matthew’s condition was a square peg surrounded by round holes.
My son’s brain injury was a square peg surrounded by round holes.
- His symptoms were not consistent with a brain tumor. He had no headaches or seizures, for example.
- He was so smart that even when his cognitive skills declined between third and sixth grade, he maintained Bs and Cs, contributing to the delay in his diagnosis.
- His tumor was low-grade and benign, but destructive.
- I don’t say my son had a brain tumor, I say my son has a brain tumor since it was and is still there, clinging to his brainstem, inoperable.
- Yet I talk of surgery. The brain tumor itself didn’t cause the brain injury; it was hydrocephalus—fluid trapped in his brain by the location of the tumor—that caused the damage. The hydrocephalus was relieved through brain surgery, drip by drip over years and years
- A brain tumor isn’t technically a TBI—Traumatic Brain Injury, usually caused by assault or accident. You’ve probably heard of TBIs in stories of football players and wounded warriors. A brain tumor is an Acquired Brain Injury—ACI. Ever hear of that? Neither had we, and it was hard finding the appropriate resources for recovery. We didn’t fit in anywhere.
And, the most important anomaly, the one that makes my story one of hope rather than one of despair:
Matthew’s recovery didn’t stop after five years, as we were told to expect. It didn’t stop after ten or even twenty years. It continues today, amazing him and us as he advances and thrives in life. It’s the only anomaly that really matters.
Sometimes being the square peg is a blessing; I wouldn’t miss that for the world.
That day was November 3, 1997. As it turned out, that day was just the eye of the storm. But you’ll have to wait for my memoir to read the full story.
March is National Brain Injury Awareness month. For information, go to www.biausa.org.
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