Step one in writing about my own childhood with spastic cerebral palsy has been to read Karen, by Marie Killilea – a book about another cerebral palsied kiddo, written by her mother.
I thought it’d be smart to get a parent’s perspective. What I didn’t expect was the huge difference, comparing the optimistic attitude of my own doctors in the 90s and early 2000s with the medical opinions on C.P. that prevailed in the 40s.
One doctor advised Killilea that Karen had “no intellect,” and to put her in an asylum. Another said that the solution “was to take such children on top of a mountain and leave them.”
Putting aside the fact that doctors were not being educated about C.P. in medical school, because little was understood about the condition, this callous treatment toward a family in crisis is appalling. Curious, I asked my mother what doctors said to her about my diagnosis – specifically the kind Dr. John M. Keggi, of Orthopaedics New England. “We just have to make a few tweaks. Just tweaks, he called them,” according to Mom.
That’s a long way from abandoning me on a mountain.
Little did I know when I started the book, I owe much to Killilea for the warm optimism with which my case was met: on top of personally administering Karen’s physical and occupational therapies in absence of other support, Killilea brought families of cerebral palsied children and adults together. She served as a personal comfort for strangers who wrote or called in dark moments, she spread the word about friendly doctors and the option of therapies, and she cofounded the Cerebral Palsy Association of Westchester.
I have no idea how the Killileas managed, but of course I’m glad they did.
Killilea was obviously adept at juggling life-tasks, and I think this sense of balance and rhythm comes out in the construction of her memoir, too. She manages to include detail about the rest of her family without bogging down the narrative. Most notably, she introduces the only child she bore after Karen all at once, without writing about the pregnancy. It was a wise cut – a good lesson in trimming off even the things that are personally important if they are not relevant to the specific story one is trying to share.
For Killilea, God is a big part of the narrative. As the family grappled with Karen’s lot, and their own related burdens, they took strength in their faith. This struck me. My C.P. was part of my turning away from the Catholic God, and organized religion in general (though maybe not for the reason you expect).
That live-in grandmother of mine was off-the-boat Irish, and she did all the things written down in the Irish Grandmother Contract: taught me to meet unfortunate circumstances with humor, swore at me in Gaelic and taught me about God.
Now, in the book, when Karen asks her mother why God would give her cerebral palsy, Killilea says, “Suffering… is a sign of God’s special love. That’s why you’re crippled and we are not. He just loves you more, that’s all.”
My grandmother said something similar to me on that score, but she put it like this: “Don’t worry, Briana. The greater your suffering on Earth, the larger your mansion in Heaven.”
At first, this seemed good. I assumed my mansion would have a heated pool. But, as my mother had me consider corrective surgery for my legs, I began to wonder: If I got the surgery, wouldn’t I suffer less? Wasn’t that the goal for my mom – that I should suffer less? And, if I said yes to surgery, if I suffered less for the rest of my life, would God downgrade me to a condo?
I remember comparing the character of my mother’s love to the character of God’s. I didn’t think of it in such terms, but I knew which one I preferred. My mother didn’t think life should be a suffering contest. And neither did I.
That said, I don’t fault Killilea for leaning into her faith. The function of faith is to give us something to hold onto, when there is nothing sturdy or safe in the material world. I had the luxury of help – help from doctors, therapists, school aides and beyond – and I owe much of that luxury to Killilea.
She needed God to help her fight the good fight, with so few others in her corner. I didn’t need Him so much, because of her.
Good for Killilea and her supportive Mother! Lest never forget, Briana, there is always faith, hope and charity (per your Grandma’s Contract!). Beautifully expressed, Thank you ~ Mom
Correction. Good for Karen and her supportive Mom, Marie!
Thank you for sharing your story. I just learned today that Karen Killilea passed away on October 30 at the age of 80. A long, full life for someone who was not expected to survive.