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 is part of a continuing serious about my journey even though I am more than midway through my 40s to understand my disability—cerebral palsy— after a lifetime of pretending it doesn’t exist
Since the teenager subscribed to the family plan of Spotify, my horizons have expanded.
I’ve found so many more podcasts, playlists and music than my 40-something brain can handle. But this allows me to learn new things.
For instance, that July is Disability Pride Month, but not Disability Awareness Month. And there is a Cerebral Palsy Day in October.
Disability Pride month started in 1990 to celebrate the updates to legislation mandating accessibility for those with special needs. And it even has a flag— black with rainbow zig zigs like a child’s depiction of lightning bolts.
How can you be proud of a disability? That sounds like it is anthropomorphizing the disability. Like it has a life. It does something.
I’m not proud of my disability. And I’m not proud to have it. It’s embarrassing and frustrating and, as I mentioned in my review of Netflix’s Special (read it here), when you have a mild disability people can’t see the depth of your struggles.
But I am proud that I get my ass out of bed every morning and do what has to be done.
And for the record, today is a hard day.
And one action I took, although small, I feel is mighty. I added a disability category on this blog and I organized it under the parent category “fitness.”
I started opening old posts and adding the tag, but I had to go get my second Covid shot (Pfizer) and then my neighbor accidentally cut the cable wires so now we have no internet.
And on our phones, the teenager and I share three gigs of cellular data. #singlemom
Anyway, no amount of stretching made my body relax. My back and lower limbs throbbed most of the day. And then after the Covid shot, my arm slowly got heavier and more sore. Now I hate to lift it.
The person who gave me the shot told me to use the arm and drink lots of water. I worked in women’s returns processing at the Stitch Fix Bizzy Hizzy where I opened and hung clothes from more than 100 priority mail envelopes. More than 500 items.
The warehouse was probably 90+ degrees but thankfully not too humid.
When I have these days, I tend to bend by doing lunges (to stretch my body and redistribute my weight), do calf raises in place, stand on one foot, and try to stretch my hips and back as much as possible.
But still the pain level seemed to keep increasing.
So in the car I turned on the heated seat and blasted the air conditioning while drinking some cucumber flavored water.
And took two Tylenol PM to ease the pain enough to sleep.
Funny part is— yeah as if it is funny— I don’t think it’s my cerebral palsy causing the pain. My period is due in four days. I think it’s menstrual cramps.
Everything wrong with my body seems to start in my lower back and hips. Hell, my daughter came into this world through back labor. Is that focus on my back part of the CP?
I used to take a lot of ibuprofen, then Aleve, then meloxicam. After a while, I realized. None of it helped.
I was listening to Dax Shepherd’s Armchair Expert last night and they did a special episode on medical misinformation. They had some pretty rough feelings toward chiropractors. They pointed out that chiropractors can be good or bad, but that the field itself isn’t very regulated or science-based. They turned the conversation to physical therapists. They liked physical therapists.
What about chiropractors who have a physical therapy background? My chiropractor can find muscle tension and stretch out things I didn’t even know I had. And my body seized up from being crooked and she straightens it out.
I may have said this before, but even if I have it’s a message that can be said again: I am blessed to have a talented and caring medical team. In addition to this team, I have also been harvesting resources for my physical and mental help.
I am recording this week’s journey so others might consider different ways to find their own resources.
On Monday, the teenager resumed therapy with a new therapist who attended Moravian College at the same time I did and is loosely a friend of my traveling companion M.
I asked if she was comfortable treating my daughter, because we have circulated in similar arenas in the past and my 17-year-old daughter struggles to connect with therapists who work with teens and is too young for a therapist who treats adults.
From what I knew of her personality from the few interactions we’ve had over the years and the information on her web site my gut said she would be a good fit for the teen.
And in my teen’s eyes, I was right.
My daughter is far from a troubled teen, but she has two parents with disabilities, a mother with trauma in her background and an extended family history of addiction.
Her strong empathy and witchy powers can make her experience of the world intense. (Speaking of which— I gave her my tarot cards on her birthday and she cried. I knew she would understand the significance of the gesture but I didn’t expect her to get so overwhelmed she cried.)
On Monday and Tuesday, my work performance wouldn’t crack 88%. I was frustrated and in pain and just moving slowly. After mapping my pain patterns for years, I can say that my back pain is worst when I ovulate and when I menstruate.
Wednesday was, as mentioned in other posts, the teenager’s 17th birthday. I had a tele-appointment with my therapist of about 12 years. Coincidentally I discovered his birthday is the same as my daughter’s. That’s just another reason we get along.
It’s fun to have a professional in your life for a long time like this because I get to see his practice grow and develop, sometimes in parallel to my own life.
I recently took the ACE Childhood Trauma test, which gave me a different outlook on some of my experiences. My parents did the best they could, but they had their flaws and their own battles to fight. So between their own struggles and life events they couldn’t control, stuff happened.
I can’t explain why it’s time to face some of this now, but that’s the way things go sometimes. We all come to certain aspects of self awareness in our own time.
On Thursday, I visited my beloved chiropractor, Nicole Jensen at Back in Line, who leveled things out, told me I was stressed and talked with me about different physical therapy stretches I need to do to fight the pain. We both agree that the pattern of pain increases on those certain days in my menstrual cycle.
I came home and ate cake and ice cream for breakfast. Not the best decision as I have been 20 lbs overweight for a year.
I suddenly remembered that Stitch Fix offers employees access to the Ginger Mental Health app. So I made an appointment for an initial consultation for Friday.
My hope was to use Ginger’s coaching to set goals and recreate/spur my discipline and good habits regarding food and exercise. For instance, I haven’t lifted a barbell in a year. I miss strength training. I still think I could be an excellent body builder.
My Ginger coach is Kathryn, who has a master’s degree in social work. Our session, completely done over text, seemed to be two sessions in one.
The first hour, she asked basic questions about me. The second hour we set up a plan of the topics we’d like to address. This week we will start making and implementing goals. It doesn’t always feel like talking to a human, though the occasional grammar or spelling error reassures me that it is a person on the other end.
Some of her thoughts include: “Sounds like a great idea! So in your case, a plan I might suggest would be to start by addressing your feelings of stress, [being] overwhelm[ed], and lack of motivation by incorporating mindfulness into your daily routine, which can help bring some relief from challenging emotions and help you see more clearly how your thoughts and emotions are impacting your behaviors so that you can feel more grounded, intentional, and comfortable being yourself. This can also include exercises centered around relaxation techniques, positive distractions, mindful awareness, developing awareness of triggers (when feeling stressed and/or overwhelmed, taking time to notice what the root cause is and look for a pattern), pattern recognition, scheduling and time management, and identifying and building on your current strengths and resources. We can also discuss accountability/working with providers (i.e. therapist and coach) and explore sleep/exercise/diet as needed.”
A lot of that feels copied and pasted, but it’s okay in my opinion. Sometimes just having someone help you pick a direction or even commit to a new direction can be the change you need.
Also on Friday, our dog F. Bean Barker got spayed at Canyon River Run, a vet we really love.
On Friday night, I learned a new work center at the Stitch Fix Bizzy Hizzy— style carding. My colleagues cheered me on in learning this new role and I very much enjoyed it, even when my computer monitor broke and I had to use a computer on another line and lean way over to grab my boxes.
Basically, the associates who “style card,” grab all the completed fixes that come off the QC line and use the packing slip to print a style card that includes a personal note from the stylist and lists each piece in the fix and offers examples of how it can be worn.
Working with anywhere from 6-8 fixes at a time, the “style carder” folds the packing slip and style card and places them into an envelope before returning them to the box.
A quick check that the box is correctly wrapped and the style carder lines up the boxes and shoots them down the table onto a metal conveyer line operated by sensors. This takes the boxes to “OB1” or the outbound/shipping department which inserts the return envelope, tapes the box shut and prepares the boxes for mail pickup.
The pickers assemble 920 items a shift, which breaks down to 184 fixes. Each QC associate folds and packages 130 fixes a shift, each style card associate aims for 900 fixes a shift, and the Bizzy Hizzy itself ships about 6,000 fixes a day.
During this time, our tasks are fairly simple, automated and monotonous so we are allowed to listen to podcasts or music. I’ve used the time to explore a lot of topics via podcasts on Spotify.
Spotify is still a new platform for me and it’s slowly gaining exclusive proprietary rights to a lot of the podcasts I listen to. I heard on several news broadcasts that Spotify paid 60 million for Alex Cooper’s “Call her Daddy” where she talks about sex often with an emphasis on blow jobs.
I listen to her because she has some funny stories of the ridiculous escapades she has had: dating a professional athlete, offering blow jobs as a way to sneak into sporting events, etc. But she also sometimes interviews people— like a retired Playboy bunny who left the Mansion and points out the realities of such sexual exploitation. Alex can be really insightful but she also can misuse her vocal range to try and make the podcast more interesting to listen to and that hurts me ears.
In addition to Kristen Bell, Dax Shepherd, Mayim Bialik, and Conan O’Brien (and in addition to the news and fashion), I searched for cerebral palsy podcasts. From TheMighty.com, I learned that the name “cerebral palsy” is an umbrella term for several brain-related disorders. And I don’t really know anything about which CP I have.
I learned CP can interfere with the neurotransmitter GABA which is why our muscles and our brains don’t communicate effectively. I learned that muscles that don’t get used correctly and don’t get the right messages can stiffen and become spastic. This causes pain and lack of control.
The two main classification differences I have heard are hemiplegia and quadriplegia which you may recognize from the words paraplegic and quadriplegic. These terms explain the parts of the brain/body affected. I would assume I have mild hemiplegic CP, as I think it only affects my lower body. But sometimes I think I see it in my hands so I don’t know. And I think I am low spasticity as I seem to have fairly good muscle control for someone with this disorder.
But I don’t know. So I did what I like to do, on Saturday, I called Nan. If you don’t know Nan from this blog, she is often my partner in crime. She has been blind since birth. Like me, we were raised in able-bodied families and never knew life any other way.
Nan is older than I and, despite her disability, has lived independently for most of her life. She attended college. She married. She has a hobby writing career and attends poetry open mics. She was a teenager when NASA put a man on the moon, but despite having never seen the moon, she has been fascinated and following the advances of NASA ever since.
Nan is closer to my aunt’s generation than mine. My aunt has what would now be referred to as developmental delay, but what was called the now insensitive term “mental retardation” in her day. In school, she didn’t learn what the other kids learned. She had basic reading skills and could add and subtract but never learned to multiply or divide. I know because we used to play school, except I really taught her things.
My aunt, then a few years later Nan, and even a few more years later me, we were all part of 20th centuries advances. Medicine had found ways to help us survive, but technology and society had not discovered ways to help us thrive.
None of us have thick medical files that detail the specifics of what is wrong with us. You were thrown into the mainstream to sink or swim. And if you couldn’t swim, you were institutionalized or kept home. Therefore, families didn’t talk about disability as much as they pushed functionality— they urged us to act as normal as possible and pretend the differences about us were not even noticeable.
I mentioned some of this to my primary care physician when I transferred to his practice more than a decade ago (some friends and my therapist recommended him). At that time he guided me to specialists to explain what is wrong with my specific body, but I am realizing now that he might not know that I know nothing about what my disorder is.
So, also on Saturday, I emailed my doctor. I asked him to help me find someone who can talk to me about cerebral palsy. I know children with the disability in today’s world work with a pediatric neurologist.
And it hasn’t all been work and reflection. My daughter and I got mani/pedis for her birthday/upcoming trip to Cape May. It was our last appointment with “Nails by Bethy” at Hyperion Salon. Beth has a new full time career that should offer her more stability and room for advancement.
We met Beth 12 years ago on the same date she ended her nail career. And the teenager and I got to be her final clients.
And yesterday I tried the new strawberry popping bubbles at Dunkin. I had them in an iced matcha latte. I must say, this is the best matcha latte I ever had at Dunkin but the bubbles had such an artificial strawberry flavor it tasted like someone poured chunks of jello in my drink.
If Dunkin’ wants to capitalize on the boba trend they should stick to normal tapioca.
Earlier this week it was 90 degrees and sunny. Yesterday was 60 and cloudy and prone to dramatic cloudbursts of dramatic rain.
Today, the high was around 45.
My knees ache and my ankles keep giving out. I collapsed on the floor at one point, scraped my knee and tore my fancy, super soft and cozy joggers I bought at Stitch Fix’s Bizzy Hizzy employee pop-up store.
So I’m currently in bed with my electric blanket and two three-legged cats.
Tomorrow I will finish my May edition of the Silk & Sonder wellness/self-care planner. Even though June starts on Tuesday, apparently Silk & Sonder starts all of its planners on Monday, so Monday May 31 is part of the June planner.
The June planner shipped in mid May, with an anticipated delivery date of May 24. According to the tracking information, it arrived at our regional post office about 10 miles away in the early afternoon on May 18, but didn’t arrive at our local post office 2 miles away until 4 days later on May 22.
It has languished there for a week.
Now, in the great scheme of life, this planner is not vital. But it is rather pricey, and I find a weird emotional sensation in stressing over planning my mental wellness strategies because my calendar is lost in the mail.
Receiving a calendar that suggests you plan for the future with reflection and mindfulness AFTER the month starts defeats some of the purpose.
And if there are problems with the United States Postal Service, shouldn’t the merchant find a new method of delivery? The product is time sensitive.
Honestly, I find it difficult to evaluate if the planner has allowed me to plot a calmer and more mindful future/existence because I’m too busy freaking out that tomorrow is Sunday, that I have to not only work Monday but work day shift, and I can’t even fill out my to do lists, meal plans and other Silk & Sonder pages.
For a while, I was writing everyday on this platform. Recently, life has gotten busy and I shifted my focus to more organized blog entries than random posts.
So I slowed my writing down to times when I am rested and focused— which sometimes isn’t that often. But seriously, this week brought me great joy and also sorrow. In those emotions, I revisited some favorite life lessons. Many, but not all, involve cats.
First, there is Louise, the freshly amputee cat. She spent two weeks under my bed. Probably still confused and uncomfortable from her surgery, but also scared and scarred from her experiences before someone contacted Feline Urban Rescue and Rehab to get this injured apparent stray some help— both material and medical.
After two weeks under my bed, she’s trusting me. She’s super affectionate, cuddly, purrs like a machine and playful. She’s gentle and sweet and doesn’t have a mean bone in her body.
Louise tested my patience and rewarded me with her love.
Hermes, yes another foster, got adopted yesterday. He came to us as a very sick kitten on July 31, 2020 as part of the Greek Pride. His sister Hades sent me to the hospital. But that’s another story.
Hermes was terrified of human hands for most of his life, and he’s still a quirky cat. His new family knows his flaws, but they are confident that he should be their cat.
Hermes reminded me that some growth is slow, but can transform everything about how you live your life. And that we are all on a different timeline.
Touch of Grey, a four-year-old owner surrender, has been with us about two weeks because of her tendency to be bitchy and nasty. She’s been an angel with us, even going so far as to try and convince Hermes’ parents to take her home instead.
Sometimes we only thrive in certain environments. What nurtures me might not work for you.
The hardest part of this week was caring for the Ten Little Kittens who were starving and probably have distemper. Only two survived the week. (More on that here: Ten Tiny Kittens) To see some kitten cuteness: Parker Playing.
Sometimes there is beauty and divinity in the briefest of lives, and knowing you did something, even if it leads to heartache, is better than doing nothing.
Okay. No more cats. I had a conversation with someone whom I’m known for a long time— decades. She has had a good career with the same employer the entire time I’ve known her. She’s my age. She asked where I landed after last year’s job loss. I mentioned the Stitch Fix warehouse and expected the conversation to drop or to get that sense I get from people that my job makes me less important or less of a person now.
Instead, she asked if we were hiring and if I thought it was a good job. I explained the pay, the good and the bad. Apparently she has no holiday pay, no paid time off, and ten hour days. Her job is taking a toll on her body and she just wants to move on.
This country places too much emphasis on our jobs and careers as the definition of who we are. And it’s upsetting how basic quality of life items like health care and paid time off are regulated by/ reliant on corporations and small business owners. Your worth is not based on your occupation.
I went to the diner last night to have pancakes and see the charming teenager #1 at work. One of her regulars asked her to help with his dogs so he and I have been talking. He’s a conservative Christian Trump supporter and I am a liberal with socialist leanings. I told him right off we probably had very different opinions on a lot of issues. But we had a polite discussion and did not attack each other.
Listening and sharing information has to be a polite and earnest exchange. People can have different opinions but respect each other and, even so, cooperate.
It is 12:40 a.m. My daughter bought me ice cream— low fat diet really freezer burned ice cream but ice cream. I still need to shower. Opie, our three-legged cancer survivor cat, has a 10:45 a.m. vet appointment for the suspicious growth on his neck.
In my life, I never have time to get bored. Why in the last 24-hours, I’ve worked two work centers at the Bizzy Hizzy. I’ve also signed up for the employee store. I almost rescued a 17-year-old Maine Coon cat named Tiny (isn’t that the best name for a Maine Coon).
I had a chiropractor appointment, and she is just as excited about the recent improvements in my body as I am. I wrote a poem. Had my portrait taken. Did some foundation research for the cat foster/rescue/TNR group with whom I volunteer.
I was asked to trim the nails of a former neighbor’s cat. And I swung by the Grocery Outlet.
Even amid all this craziness— I contemplated some lessons I have learned about myself.
1. To get a good photo of me, find props. I am an eccentric person so when it comes time to take a photo, toss me an umbrella, cat, bird, etc., to see my personality.
2. I don’t have the patience for rescue work. I love to help people and animals, but when someone reaches out for help and either doesn’t accept it or makes it impossible to work with them, I lose all empathy.
3. I’ll never be the fastest, but I am dependable and flexible. I work in a metrics-driven warehouse. I will never be super fast and therefore efficient but so far, my supervisors seem to value my flexibility and good attitude. Which is ironic when my last boss called me “hostile.”
Which brings me to my last lesson from today.
4. Others fear you will display the same bad behavior they do. If someone has an insecurity or weakness in a certain area, they may treat you as if you have the same flaw. I once had a boss who literally removed all the paper and pens from my desk because she didn’t trust my ability to listen and take notes at the same time— despite my fifteen year career as a print journalist. And then I noticed that she only took notes when no one was speaking.
The same sort of thing may come into play if someone thinks your idea won’t work— they may believe that they would not be able to do it, so therefore you won’t succeed. That’s when you have to detail the steps and build confidence.
My teenagers and I have been craving pizza so I told them that if we survived this crazy first week of mandatory overtime at my job we would order pizza Saturday night.
Then I asked them if they’d rather go for pizza.
What a novel idea in this pandemic world.
I called them from the car as I drove home from the warehouse— because teenager #2 scrubbed up the dining room table to feed us something “sweet and yummy” procured via her actual maternal unit.
“Hey, guys, are we still going out for pizza?”
They had forgotten but teenagers are always ready to go out for pizza.
George’s is one of our local pizza joints, about a mile from the house. They have certain dishes, like their homemade vodka sauce (which you can order by the quart), which are satiating comfort foods. They had a 12” one-topping pizza for $6 that I nicknamed the “date night” pizza because it’s perfect for two people to share. They also have two sizes of cannoli which thrills teenager #1.
They once made me an entire pot of coffee because I ordered it late in the day and they offered to let me take the rest home.
I ordered, with the teenagers’ help, two of the little pizzas— one with green peppers and the other with black olives. We also ordered calamari, garlic knots and breaded cauliflower. Only I could get that many vegetables into pizza night.
After a very long day and an even longer week, it felt good to share this experience with the teens. Teen #2, at my goading, went out to the car and got $1 in quarters for each of them to use as they wished. I thought one of them would play pinball.
Teen #1 got one gumball and three bouncy balls.
Teen #2 chose expanding dinosaurs. They now reside in a cup of water at the bathroom sink.
Today is day 10 of my post-diagnosis Covid 19 isolation. I am now watching The Tudors on Netflix, struck by the similarities between the Coronavirus pandemic and the 16th Century sweating sickness.
I feel like there is so much not known about Covid-19 and I suspect many people know more than they can admit. But the medical treatments, anecdotal layman wisdom and people’s behavior remind me of these scenes depicting King Henry VIII’s medical crisis.
My symptoms are still dizziness and a dry cough, a congested head and weakness. And chapped lips.
I catch a chill easily, and sometimes the smallest actions wind me.
I think the general populace puts too much security in flimsy masks, and gives not enough thought to social distancing. I think the various government tactics to curb the pandemic cater to major corporations and starve small business.
And it saddens me that people will flock to WalMart or order from Amazon, but not mail order from a small local business or buy gift cards for small merchants.
It also saddens me that so much of society can really on DoorDash or GrubHub, but not call your favorite local restaurant and order take out.
I believe I caught the Coronavirus at work, despite all the precautions to “keep us safe.” Because despite the gloves, the masks, the nurse, the sanitizer spray, and working socially distant, the reality is there are 70 or more of us in one room at the same time, unmasked, eating and talking for each of our three daily breaks.
The vaccine has arrived. And I wish it were — what do they call it— a reactive vaccine vs a mRNA vaccine. Perhaps I am old-fashioned in my thinking.
So I suppose I am grateful to have caught Coronavirus and see how my body reacts. I have had the chance to develop my own antibodies. And no one else in my family for sick so I am also grateful for that.
I am deeply saddened that others have not had the same privilege that I have. I am saddened that people I love have lost people they love.
It is a confusing time.
So my best advice would be to do your own research, think about how viruses work and make the decisions that keep you and your family safe. And care for your neighbors and support local business in ways you can.
I wanted to write this last night when I got home from the Bizzy Hizzy but I had forgotten my phone charger in the car and wanted to preserve my battery.
After completing another week at Stitch Fix, (where I listened to the Indicator’s episode on “The Beige Book” from the federal reserve bank and learned about pandemic-fueled growth in the warehouse sector as I worked my new warehousing job performing inbound processing functions), I mixed myself a cocktail— Ciroc Vodka, coconut seltzer and bubblegum A-Treat. If you missed our taste test of the A-Treat, you can see it on You Tube here: Bubble Gum?
Speaking of podcasts, last night I listened to Trevor Noah joke about James Bond, an exploration of what happened to a Van Gogh painting that wasn’t a good Van Gogh (Carnation in a Vase, I believe) and rediscovered John Rosemond, the syndicated parenting expert columnist who is a self-described “renegade family therapist who believes in the Bible not psychology.”
Now, my estranged husband reminds me that he believes we knew that Rosemond was a conservative Bible-thumper, but last night hearing him in a radio program where he could speak his views freely was a “wow” moment.
I fully believe in his advice and agree with his philosophy that parents have a duty to prepare their children to be emotionally “sturdy” adults and that discipline comes when adults maintain an authoritative attitude that commands respect versus employing certain trendy (even when “research-based” methods). I enjoyed his podcasts. Out of five stars:
Podcasts have left me on the fence about a lot of hosts, but I have listened to people like football player/broadcaster Emmanuel Acho on his show Armchair Expert and learned many new perspectives.
Earlier yesterday, since teenager #1 is all cyber now, we spent lunch hour getting pancakes. It was the first time in almost 9 months we went out together and sat in a restaurant together/alone for a meal.
Nothing beats buttermilk pancakes in the teenager’s eyes and I had a magnificent eggs Benedict Florentine with tomato and garlic. I can’t wait to have it again.