Marie Killilea, mother of Karen Killilea and champion for research and improvement in medical treatment for those with cerebral palsy, wrote two memoirs and a children’s book about her daughter. She also wrote another book— though I don’t know the content of that one.
I’m puzzled by the title of this second memoir, as it refers to Karen’s correspondence with some American service men during the Korean War.
But the book focuses not on Karen, nor that correspondence, but family. The text itself is more beautiful and structured like a novel. Members of the family are cast with richness, though I think sometimes “Big Marie” (the author as her first born daughter is also Marie) gives the various pets in the household more literary attention than Karen.
Marie says she wrote the book in response to the huge volume of mail she received asking what happened next.
The second memoir focuses on all the children growing up, struggling with their futures and leaving home. Well, except for Karen, who, at least until she started showing Newfoundlands in dog shows, just exists in the background doing her physical therapy and for more than a year carries some unknown demon that she is wrestling and the family just lets her sulk. For a year.
The older children get married. A seven year quest for an annulment is chronicled. And elder Marie Killilea’s long-awaited miracle baby is conceived when she is 43. And then she is confined to bed.
Karen’s triumph is learning to put her own shoes and stockings on.
And in the end of the book — Karen reveals the source of her depression and her decision on how to approach her “freedom.”
I’m so disappointed not to know what happened to Karen. Remember Karen? I thought this was a book about Karen, not her damn dogs, the 80-year-old obstetrician, or what a holy Catholic family and their brood looks like.
These books are directly related to my quest to researchcerebral palsy, a disability I have, and chronicle my journey to whole health. With discipline, hopefully I will lose weight, return to strength training and someday pursue my longstanding goals of running a 5K and hobbying as a body builder.
As I said then, I thought this memoir would be about Karen. And her struggles with cerebral palsy. A condition no one knew anything about at the time.
Now this is not a complaint, but the book is about advocating for a child with cerebral palsy and Marie Killilea’s struggles as a mother— a mother with a history of pregnancy loss, devout Catholicism, children both precocious and sickly.
Karen is merely a two dimensional figure in the background. And the book chronicles many of Karen’s tribulations (limiting fluids to 20 ounces a day to prevent seizures and reduce spasticity, sores and discomfort from what would now be seen as barbaric full-body braces, and despite her keen intellect being banned from school) as well as her developmental triumphs.
The book ends with one such celebratory moment.
In the passage photographed above, Karen tries to navigate a hill. Mrs. Killilea never quiet explains where she was going— to the house? Away from it? Karen throws her crutches down the hill, rolls, retrieves her crutches, falls several times trying to get up, while her family watches and records it on a neighbor’s home movie camera.
This is one of those moments touted as bastions of independence. But how many times do you want someone fall without at least asking if they want help? And this is solely my opinion and my experience, but I hate seeing myself on video. The camera makes the “wrongness” of the cerebral palsy body more exaggerated and severe. Her parents want to record this moment in their Pride, but, to me, and again this is my opinion, to rewatch such a moment is to buy tickets to the freak show.
This family had inordinate health struggles with all of there children and the work Mrs. Killilea did to benefit cerebral palsy research made the world grow exponentially. And I am grateful.
But as I study the first chapter of Mrs. Killilea’s sequel memoir, With Love From Karen, it leaves me feeling that Karen’s condition has led to a 1952-best-selling book that has eased her family’s burdens, allowing them to buy a big, broken down Victorian house and given them a life line after a decade of medical bills for all their children.
I feel like Karen is exploited. Especially upon hearing that the whole family appeared in Time magazine.
Also I note Mrs. Killilea’s writing style has improved. The sentences flow with more artsy grammar and word choice. The description is more detailed. The verb choice strong.
Does she have an editor working for her now?
Bean, the 50-plus pound mastiff mutt puppy, and I are in the hammock. I hope this book presents Karen as a person, not an accessory.
Yesterday I had hoped to do more editing on the bits and pieces left of the near-final manuscript of Manipulations, the first of three novels by me, coming soon from my little publishing imprint, Parisian Phoenix.
But then my graphic designer partner in crime (and this endeavor) encouraged me to start Karen by Marie Killilea. The book was in its 11th printing by the mid-sixties and I am reading a copy from about 60 years ago.
It’s part of my recent quest to understand my cerebral palsy, which ironically led to me discovering that my anemia has reared its ugly head. So maybe this quest isn’t addressing physical needs as much as emotional ones. And the neurologist’s office did return my call. My appointment is January 13. Yes, in six-and-a-half months.
While I certainly understand what these parents must have gone through (Karen was born in 1940 and died in 2020), this certainly was a different era. An era of institutions, a lack of knowledge and families and doctors sitting around smoking cigarettes together.
But so far, and I believe Karen is now 4, Karen is described as beautiful, but presented as a thing in the background. The memoir so far is about the mother and her thoughts and parenting techniques and her interactions with the medical community.
To me, the way Marie describes placing her in the backyard and going in the house to do chores… well, Karen slowly pulls herself by her arms inching toward whatever is of interest. The current chapter describes her playing in a mud puddle. She sounds like a fish caught between land and sea.
Honestly, to me it sounds cruel. I’m sure it fostered independence and strength but damn it sounds grueling for Karen. This is the beginning of the ideology of mainstreaming kids with disabilities— toss them in and let them adjust. And as young people with disabilities, emotions and intellect are still immature. So it is cruel in my opinion to let these children struggle with the physical, too. It’s this weird we get that we are different but we don’t have the life experience to understand why or how and while allowing a child to figure it out raises a fighter and someone not prone to accept help or pity, it would be nice to have some framework other than you can or cannot do something or are or are not like everyone else.
I see a potential multitude of nonfiction book projects in my future. My memoir will need to be three volumes: my childhood, my “squiggly” career (yes there is a term for people with eclectic careers like mine), and this health quest.
Speaking of non-fiction, I would like to publish my honors thesis from Lafayette College and do an anthology where I have select authors/artists to explore what I will refer to as identity politics. I have mentioned it to Nan, my blind friend, and Bill, my horror-loving freak friend, and both love the idea. I encourage you to read Bill’s novels, The Kink Noir series, which blend a dark 1940s detective vibe with kink and erotica while exploring some topics about what it means to be human.
My review of Bill’s most recent book is here: Debauchery