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.
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.
Item one: Mama Periwinkle “Wink” Budgie Bird died probably June 3, in the wee hours of the night. She appears to have died peacefully in her sleep. Teenager #1, with her witchy energy powers, agrees.
Item two: Teenager #2 graduates from high school tomorrow.
Item three: the overtime at the Stitch Fix Bizzy Hizzy has caught up with my body. Last night, the combination of work and the subsiding hormones of my menstrual cycle made my discomfort so intense my knees were shaking as my body tried to compensate for the pain in my lower back. Which, I survived thanks to fun messages from one of my neighbors and photos like this one of my daughter’s dog:
Item four: My supervisor and the person who hired me surprised me with an observation last night. I told her I wasn’t feeling my best but would gladly see what I could do. I scored 144%. I think we were both astounded. She did the observation early as she was taking the rest of the week off for her birthday.
Item five: and somehow, on her birthday, despite still having pain (but now the kind of pain that follows the chiropractor not my everyday pain), I met my QC metrics for the first time ever. That means I folded clothes and prepared 130 different boxes (fixes) for the Stitch Fix clients.
Item six: I think foster cat Louise is part giraffe.
It’s 11 a.m. on Friday morning— it looks crisp and clear outside. Teenager #2 is in school. Teenager #1 just emerged from her room as we both got to sleep around 3 a.m.
Mandatory overtime and lack of sleep are kicking my ass. My household is experiencing some knocks too as the Roman Pride tuxedo kittens from Feline Urban Rescue and Rehab are vomiting. We hope it is because of a recent change in their food.
I wish I could say the birds have been quiet. But alas, alack, the cats broke into my room while Boo-Boo the yellow parakeet was free-flying and Boo-boo flew downstairs. Now Boo-boo is not a hand-tame bird.
This occurred while I was wrestling clothes in the Quality Control Valley 2 of the Bizzy Hizzy at Stitch Fix. Teenager #1 heard Boo-boo screaming because two of our household cats had taken to swiping her out of the air.
Teenager #1 rescued Boo, who was still feisty enough to bite her repeatedly.
So there was that.
Meanwhile, at the Bizzy, I was thinking about numerology and “angel numbers,” thanks to a podcast I heard the other night. In the midst of all this craziness, as I was leaving work the other night, my odometer read 33533. Palindrome. Prime numbers. “Sacred threes.”
So the boxes that got returned to me last night were sent back for issues with wrapping. One of the people training me finally came over and asked how I tear my paper. I showed her. Carefully. Almost daintily.
“Ah, she said, “there lies the problem. You need to rip it fast like a bandaid.”
I did and the results were very different and better.
I thanked her for the tutelage and laughed, pointing out that this was not something that did not come naturally to my skill set. I have no depth perception when related to placing items in containers. I suck at folding clothes. It’s agonizing for my body to stand still for 8 hours. And I have no concept of straight lines.
But all in all I am improving and I truly enjoy the challenge of learning something new. It reminds me of when I first learned cash office at Target. I wanted to vomit every time I started my shift.
The person overseeing me thanked me for taking criticism well, and again I laughed, and reminded her that I needed her it. She said a lot of people get frustrated. And I assured her that I was indeed frustrated with myself for repeating the same mistakes. She quickly revised her statement— “No, she said, people get really frustrated with me.”
And that struck me. Because I know what she means. And I have to say, in both my professional and… let’s call them survival jobs, I have had supervisors that understand how to deliver constructive criticism and all kinds of feedback and those supervisors who care about the mission, the corporate line, and/or themselves and how they look, more than they were invested in the people.
So far in the Bizzy Hizzy, I have not met one of those. I also feel I am in the honeymoon phase at Stitch Fix. My judgment may be skewed.
This mandatory overtime stinks. We’re all exhausted. And even the scrambled egg appreciation breakfast and free snacks can’t push us past that.
This might be the spot to mention that one of my supervisors spent most of the night running around with a squealing plastic chicken.
The nurse wandered into the Valley about 12:30 to check on everyone doing overtime (as the “deep cleaners” worked around us— which by the way, they move nothing and just wipe shit down. I find more dust and grime when I do my nightly wipes). I showed the nurse my new skill at tearing craft paper. She gave me a gloved high five.
I’m working a normal 8-hour shift tonight then returning for an 8-hour double time shift tomorrow morning. Now if you excuse me, I must go lay out my quarterly budget as it is 2-weeks overdue.
So tonight I finished my first two weeks at the Bethlehem warehouse of StitchFix, or the Bizzy Hizzy as they call it. I am still fascinated by the logistics of the warehouse and how well it works.
I reached 128 again tonight in my picking, which considering it looked like I hit 80 before my meal is both good and disappointing. I think I would have hit 140 had I not been stationed in W most of the night. Between the physical distance between that section and the “garage,” about 750 steps, I lost a good four minutes with every cart. That adds up to an hour over the course of the night so yes my math is correct.
This job requires so much walking— about 21,000 steps tonight—that my calves, thighs, feet and butt all burned by the end of the night but it’s the “agony” of muscles that haven’t seen that kind of action in a long time.
I do love seeing what goes in each fix and the fact that I work alone and can compete against my own performance pleases me.
I even got to visit the employee store tonight— where dresses and pants are $10, tops are $5 and you can buy five items. I bought some Christmas presents for the teenager. And a Karl Lagerfeld Paris polka dot sleeveless blouse and 1822 denim ankle skinny jeans in acid-washed camo for myself.
The teenager ordered Dominos at midnight so we could all— me, the cockatoo, teenager #1 and teenager #2— could have a pizza party.
That feels like a great start to the weekend.
This afternoon, teenager #1 got a haircut and bleached her hair. While out with her dad, they stopped at our foster godmother’s house to pick up a spare 18-pound turkey she had. Now it looks like I’ll be having some friends over for a turkey meal on Sunday. It will be my first attempt at making a turkey.
Meanwhile, the ringworm which originated with Hermes what feels like months ago has not only spread to both other litters of foster kittens but two of our personal cats.
Speaking of cats… teenager #1 took this video of Jupiter from the Roman Pride and within the first 24 hours on YouTube it had 622 views. YouTube: Hello Jupiter
Sometimes I am reminded of my age— when I think of those summers of my girlhood circa the 1980s, when Pennsylvania experienced temperatures that averaged in the high seventies/low eighties and for about 2 weeks every August a heat wave of around 85 degrees.
It also snowed a lot more, and I can’t say I miss that.
Now I won’t be naive enough to suggest this pandemic has been fun. Some people have gotten seriously ill, others have died. Luckily in my circle, those who contracted Covid-19 survived and none ended up in the hospital.
But as I said in the beginning of the pandemic, the Coronavirus has forced us to look at our health system, our purchasing habits, our supply chains, what we need and what we don’t. I have found a more relaxed pace of life, and while I have lost my job, I have found some inner truths that bring me hope. Perhaps that is where my naïveté lies.
Yesterday, I had a business meeting with my first client as a partner in Thrive Public Relations. Thrive is the brainchild of a friend— who has been searching for someone with media, print and editorial experience to complement his digital marketing, strategy and networking expertise. I have agreed to help him, and hopefully this will lead to some paying work that could help keep me afloat and allow me to rebuild my career portfolio.
I spent much of the last year as a grant writer, and would love to highlight some current public relations work to augment my grant writing potential.
So I was asked to attend a business lunch at Sogo Asian Fusion yesterday in one of my favorite environs, downtown Easton. I thoroughly enjoyed, despite the 95 degree heat, dining on the patio. It felt lovely to build an outfit, put on make up and head into the world.
Then later that evening, my propensity for stress-related binge-eating led to me eating most of a jar of “trail mix” — I put that in quotes because it had walnuts and almonds but was mostly butterscotch and white chocolate chips— that my blind friend Nancy gave me for Christmas. I had it on my desk at work and it was one of my possessions that Mr. Accordion drove to my house.
And then my daughter cornered me. She started reciting old bits from Brian Regan, one of my favorite comedians (from the golden age of the early 1990s, before I graduated high school and Nirvana changed the world).
Finally she got tired of her delivery falling flat and we spent an hour watching Brian Regan clips from YouTube on my phone. I grabbed a Diet Coke and finished the rest of the vanilla vodka from County Seat Spirits.
The teenager’s father, my husband of 20-years whom I separated from last summer, does not like stand-up comedy. But a good stand-up comic (like Regan, or Trevor Noah, or for those who have thicker skin and/or less sensitivities Denis Leary and George Carlin), can lift my darkest spirits. So I love the fact that our daughter inherited my taste in comedy.
And when I got up this morning, as mundane life started to overwhelm me with chores and commitments, Nan called.
The Mighty.com had published her piece on our summer picnic and shared it with Yahoo News. It features me, and the teenager, so I got to enjoy reading about my life.
The teenager has committed herself to her fitness goals at the same time that I have to use some serious discipline on my own behalf.
As the woman in her mid-forties with lower body cerebral palsy and a history of anemia, I have to join her.
The stress of my job has impacted my sleep and my blood pressure and the exhaustion that comes everything—from turning to various comfort eating techniques, drinking too much coffee and working too hard—leads to me not getting enough steps and not doing cardio or weight training.
That makes me look different, feel different and act different.
I like being a strong, fit woman, even if my body isn’t athletic.
My daughter informed me that she can’t work out with me. She doesn’t want her success or failure to have anything to do with anything other than herself. I respect that heartily, but I hope soon we can at least go to the gym together.
She downloaded the Instafitness app onto her phone. I purchased this app for $5 six years ago and it helped me make my body sleek and lean. I went all the way from 142 pounds to 110. That was too thin.
By the way, today I’m 142 pounds.
But why we like Instafitness— it divides workouts several ways:
By body group
By equipment (body weight exercises, dumbbells, and resistance band)
Some are labeled as weight loss
Each work out ranges from 10-20 minutes so you can mix and match to build a routine.
Today I tried an arm workout on FitOn. It was a 10-minute burnout session for upper body. I liked how complete it was, but man, I was not prepared for ten minutes of non-stop high intensity dumbbell pounding.
So far, and the reality of our need to get in shape has only really hit us this week:
We have made smarter food choices.
We have eaten most of the remaining “junk” in the house.
I have eaten less refined white carbs.
I have eaten more fruits and veggies.
My steps were averaging a sedentary 2,000 to 4,000 a day; now I am in the neighborhood of 6,000 to 8,000.
I lifted today. Briefly.
The teenager is killing it— yesterday was chest, abs & lower body. She repeated chest & abs today.
I might even try to get up early tomorrow and do yoga. Maybe.
The best stories start with “it began as a typical day,” but in this case it did not.
The teenager turned 16 on Tuesday and my employer had scheduled our annual meeting for Tuesday so I planned to take off today and tomorrow to celebrate with my offspring.
With Coronavirus changing everything I could have taken Monday and Tuesday instead.
Last night, I curled up in bed with a gin cocktail and watched some more of Harlan Coben’s: The Five on Netflix. (Mini review: my friend, brow maintenance person and nail tech Beth recommended the show—and I am enjoying what I feel is edgy cinematography, rapid paced story telling, complex writing, and realistically complicated and tragic characters. It’s like watching a comic book.)
So I got to bed later than I normally do and I slept a little better than I normally do. I fed the kittens, made coffee, started laundry and finagled a cake carrier into the dishwasher.
After a cup of my favorite Archer Farms Direct Trade Cafe Mosaica from Target on my breezy enclosed sun porch, I slapped some clothes on… and ended up trying to accessorize a basic outfit.
Which is funny because I was going to pick up Nan, who is blind and won’t see my efforts anyway.
And then I was surprised to find out that the teenager made me breakfast— a mini bagel with greens, cucumber and fresh bacon.
After we worked on some poetry, Nan and I went to Lidl. And I took her home.
When I arrived home, the teenager informed me that her plan for today involved not wearing pants. So after a brief respite, I went to Wendy’s for a Frosty-ccino.
That was when the real adventure began.
I decided to take Nala, my four-year-old Goffin’s cockatoo who joined the family in January. Now, recently we took Nala to Dunkin Donuts to try hash browns and that went well.
So I ordered my Frosty-ccino and a junior fry for my baby girl bird on the mobile app and got into the drive thru lane. And then I did what we all do in this day and age. I took a selfie.
That’s when I realized Nala had pooped on me in fear. And I had no wipes in the car. Green bird droppings now stained my white t-shirt and Nala was walking in the mess.
But everyone in the drive thru window loved her— three employees cooed at her from afar.
I pulled into a parking space and offered her a French fry and she was too scared to eat it. I drove her home, put the car in the garage, gathered the waste and the food and started up toward the house.
Now, the teenager’s father moved some heavy original doors from the house across the garage so he could use my great grandmother’s hutch in his apartment. He did this a couple week’s ago. The doors block a portion of the stairs.
I got tangled up on the stairs/with the doors and fell, to the left onto the doors to avoid smashing Nala who was on my right shoulder.
I almost spilled my coffee and French fries fluttered like hail.
But luckily Nala is a bird, and a forager, so she doesn’t mind a little dirt. I gather them all carefully and climb up from the floor, some contusions and cuts causing minor pain.
I bump the doors and they almost fall on me. This time the French fries scatter to the four winds.
I notice how much blood and dirt cover me and I head inside to discover Nala has pooped even more.
I set her down.
I remove my shirt. White tee shirt. Vivid blood. Green poop.
I wash up and count my blessings— I was very close (too close) to breaking an arm.
I put on my lucky shirt once I cleaned up.
Addendum: I posted this link on my LinkedIn profile and wrote this introduction as to why I felt this piece was important especially as part of a discourse on social justice.
I don’t like to admit I have a disability— #cerebralpalsy. But it’s important to note that with all the stereotypes and institutionalized ideas people have about “others,” whether other cultures, races, religions, sexualities, identities, educational or social class (the list goes on and on), for those of us who have tried to “pass” as “normal” or “mainstream,” our experience is difficult. As all life is difficult to one degree or another. But if you are obviously “different” and you can’t “pass,” those notions of who you are based on quick judgments can be catastrophic. Or lead to people doing harm to you or someone you love. #blacklivesmatter
In that context, allow me to share with you what a typical day looks like for me. Warning— I end up bleeding by the end of it. Different isn’t inferior. Or threatening.