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.
This will be another long day-in-the-life style blogs. I never seem to know what will resonate with people so have it all, right? I’ll bold key words to allow easy skimming.
Adult FURR (Feline Urban Rescue and Rehab) fosters Louise & Khloe are still competing for my attention and unsure if they like each other. Two very different cats with very different personalities. Both really cuddly and are going to be great additions to any household.
Parker and Extra Crunchy of the ten little kittens that got sick with distemper are now neutered and ready for adoption. They are such loves, especially fond of human snuggles as they were syringe fed.
And of course Touch of Grey (another adult foster) still thinks she’s the boss. She definitely is more cat than dog and we have good reason to believe she has neurological issues which may contribute to her agressive mood swings but the teenager is working with her.
My original Saturday morning plan was to prepare an outline of the coffee and kittens fundraiser, but our cat foster godmother had two kittens for us. One black kitten from a very feral litter, but he was not hissy spitty and one who turned up with a litter of small kittens who obviously was older than them and had been on his own. That one looked a little like Crunchy but was feisty.
I nicknamed them Fuzznuts and Fluffballs in my head, not knowing their gender. I also considered our “cats are gods” theme, but these two were not a litter so we didn’t want to use a whole pantheon for them. I considered Elohim and Yahweh, but my daughter vetoed it. I worried someone might get offended.
But foster godmother said, “people always get offended.”
A DMX song came on the radio in the car on the way home. DMX passed away recently and rappers also have that badass cat attitude. We knew the black kitten was a girl and the grey a boy.
“What about DMX and Diam’s?” I suggest.
“Mom, no one knows who Diam’s is,” she replied.
Latifah? Salt and Pepa? Then it him me.
“Eminem and Slim Shady,” I said.
“Mom, they’re the same person.”
“It doesn’t matter. The black one can be Shady and the other can be Em.”
So now we literally have a cage of two kittens, Em(inem) and (Slim) Shady in our living room.
The teenager went to work at Tic Toc Family Restaurant at three, and I went for Nan, my blind friend. We had plans to visit Park Avenue Market for deli salads and meats and the Lidl for boring things like milk, cheese and half and half.
I casually walk through the store explaining every item I see, from snack items to spices to peanut butter in squeeze tubes and olives in plastic snack cups. I love food and I love weird so this is why Nan and I consider grocery shopping fun.
At Park Avenue, Nan indulged in some meatloaf and ham. I got the pickled Brussel sprouts, liver wurst, bacon maple potato salad, cranberry horseradish, and violet candy. And crab stuffed flounder we had for dinner tonight.
These will resurface tomorrow when Nan and I work and have lunch together.
At Lidl, Nan got yogurt, lemonade, milk, Mac and cheese and those amazing home baked cookies. I got produce, cheese, breads, chips, seltzer, butter and Brussel sprouts among others.
And when I brought Nan home I discovered someone hit and run my car. This happened in July 2019, too. But that was a full side swipe. At work. In a church parking lot.
Nails and fun with Beth
I came home and put the groceries away and got ready to leave for my friend Beth’s house, formerly Nails by Bethy at Hyperion Salon. She recently started a new career in commercial insurance (I think) and so won’t have time or stamina to maintain my fingers and toes.
But tonight I was headed to her house for “cocktails, dinner and board games.” She agreed to have my pineapple coconut rum drink ready when I arrived. I met some of her friends. Beth made chicken poblano with black beans, rice, coleslaw and pickles. And as I mentioned yesterday, we all played Cards Against Humanity when my family arrived. Her father brought the teenager over so she could be my designated driver.
Brunch with Mom
My mom and I have a tumultuous relationship probably due to trauma we’ve experienced in our lives. My mom has not had an easy life. Let’s face it, most typical folks don’t.
We had a talk last weekend and I agreed to visit her today. She offered to take me out to a swanky breakfast and let us stay for the parade for IndependenceDay that would be passing by her house. I don’t really like parades, and I’m sick of eating out.
So I requested a grilled cheese on rye instead.
It was delicious.
The teenager brought the Bean dog to visit Mimi and Mimi’s dog, Dog, was a gracious host. Dog is a miniature poodle.
Once we arrived home, I read a little more Karen by Marie Killilea before I opted to take a nap. I then stripped my bed, worked on the fundraising outline and went for a walk with Buddy and Sarah.
I stumbled on the sidewalk, but did not fall. Knowing I had borderline anemia made me feel better that my cerebral palsy wasn’t running amok.
For dinner, in my continued effort to eat more vitamin rich food to combat anemia, I made the crab-stuffed flounder, brown rice with pistachios, and sautéed some leftover green beans and the cabbage, kale and carrots in a Green Goddess Salad I bought on clearance at Lidl yesterday. I topped it with some rather stale sesame sticks purchased at Forks Mediterranean Deli at our last visit (which was too long ago).
My goal for the rest of the night is to work on the Wheel of Life in my July Silk & Sonder planner and finish Karen.
Happy Independence Day.
Remember that the founding of this country can be seen from many perspectives: as destroying the lives and cultures of indigenous populations, as a place to promote white Christian values, and/or as a place where people came to live according to what they felt was right.
The last 48 hours since the teenager arrived home from Cape May have been a blur. The fosters Khloe and Louise from Feline Urban Rescue and Rehabilitation are very glad to have the dog out of my room so they can compete for my attention freely.
The teenager brought me some breakfast coffee from Cape May Roasters. I normally don’t like breakfast blends as they are typically light or medium roasts and I like my brews dark. Maybe it’s just because the teenager bought it for me or maybe it’s just good coffee, but I really like it!
Author’s note: I started this blog entry in the wee hours of Saturday July 3 after my Friday July 2 shift, after having three days off for teenager’s beach vacation. Someone had to watch the menagerie.
I have tried several times over the last 24 hours to finish this entry, but it is now 23:55 (or 12:55 p.m.) with cool air filling my room and idiot neighbors having fun with firecrackers.
And I’m no closer to posting.
But back to the Cape May souvenirs, which for me include a mini retro Pac-Man Arcade Game!
So we spent Thursday evening catching up and I almost finished Karen by Marie Killilea. Marie Killilea raised a daughter with cerebral palsy, took in a neighborhood teen, raised another daughter who had repeated bouts with illness including rheumatic fever, and later had a mischievous son.
I would say I’m 50 pages from the end of the book. It is Marie’s memoir about her work to champion cerebral palsy, promoting knowledge and encouraging research, while raising her sickly children. These children never seem more than cardboard cutouts.
On Friday, I returned to work at the Stitch Fix Bizzy Hizzy. I didn’t get to Style Card. I QC’d something like 36 fixes the first two hours, but by the half way point of my shift only hit 63. And continued to decline with only 123 for the night. The goal is to quality control check, fold and box 130 fixes per 8-hour shift.
Meanwhile, the cat group is discussing giving us new kittens and developing a new kitten-cuddling and coffee fundraiser that my daughter, my former employer from ProJeCt and myself are brainstorming.
So I guess I’ll have to revisit this tomorrow and introduce you to our new kittens and tell you about my evening with my friend and former nail tech Beth at her home with her friend Barb and eventually the teenager and my estranged husband. We played Cards against Humanity and I drank four very stiff pineapple juice and rum drinks.
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