The teenager graduates from high school this spring. My baby is graduating in 2022. My baby.
It’s been a good start to the year.
My great grandmother was born January 1, 1900. So every year I think to myself that my great grandmother would be X years old. 122. She died in the 1990s.
I woke up at 4:30 a.m. and cuddled cats until 6ish. And believe it or not, I had a cup of coffee and starting doing chores— dishes, meal planning, updating the wall calendar.
The teenager came home from work around 9 a.m. She and her dad brought my favorite coffee, café con leche, and a Sizzli: pork roll, egg and cheese on a bagel. I have wanted to try the pork roll Sizzli for a while and it was delicious. 19 grams of protein and 400 calories.
The teenager and I went to the gym, where we goofed around during the official Boot Camp class. She loaded 188 pounds onto the leg press! When Boot Camp was under control, we started barbell squats and then Romanian deadlifts.
The teenager squatted 135 pounds! I made it to 115, but I wasn’t comfortable attempting 135. It’s too close to my body weight.
I love to watch her lift.
Then, I went to get Nan as we were scheduled to work. After we finished her writing, I prepared a chicken bone-broth soup and a cheese and pierogie casserole. My Hungryroot is stuck in transit so I rooted through my pantry to see what I could prepare. I had a long overtime shift yesterday and don’t want to spend my day off grocery shopping.
And then we starting reading the upcoming Parisian Phoenix anthology, Not An Able-Bodied White Man with Money. And meanwhile Joan is shooting more photos for Trapped.
I have received several beautiful messages today— from current and former colleagues at work, strangers on my blog, and my psychologist.
And another good thing— I got to laugh heartily with my daughter. Mostly at the expense of her dog.
And this is Bean trying to make friends with Khloe. Video
** P.S. I haven’t done my Cobra pose physical therapy. My spine is hurting. Is this why?
I spent most of my morning trying to be practical and do what needs to be done. And maybe get some breakfast before heading to my father’s viewing.
My morning coffee companion
The teenager went to her morning job— a cat sitting visit— and then had breakfast with her father and my college roommate.
I finally forced myself to eat an egg with some kale.
And I found myself sitting quietly.
Struggling to find shoes that fit.
Photo 1Photo 2Photo 3Photo 4 Photo 5
We drove up to the funeral home and met my aunt and my uncle’s widow and her family. My older sister and her husband came next. And then my stepmom and her sister (and her extended family).
My uncle’s widow thanked me for my recent writings as they helped her adjust to the reality that my father has left his earthly life.
(Later, my stepmom’s nephew hugged me and his wife told me how beautiful some of my recent writings and reflections have been.)
Together, we entered the funeral home. And the funeral director apologized for being in her slippers, but honestly it brought me a sense of home.
We walked into the chapel, and my dad was surrounded with red and white roses and celebrated with so many flowers from friends, relatives and colleagues (some of whom even signed his nicknames for them instead of their given names).
Photos everywhere.
Photo 1: On the top, that’s a photo of my dad and his older brother, Earl Ivan Jr. or “Skippy.” The photo on the bottom right is my dad on microstock race night with my nephew holding the now teenager as a baby.
Photo 2: My dad holding the now teenager at the West End Fair, at the tractor pull. It was my first outing with the baby on my own. She was about 8 weeks old.
Photo 3: I had to take a photo to remind me of how peaceful Dad looked, with a slight smirk like he got the last joke. He just needed a remote and some pretzels. The teenager said before he passed on Wednesday morning, she could feel his reluctance to leave us, but the calm when he did.
Photo 4: My stepmom and my aunt, the last remaining sibling
Photo 5: the teenager and her dad
My brother and his dog
My mother came and said some nice things to my stepmom, thanking her for always being nice to myself and the now teenager, and my stepmom said we are easy to love.
My friends and Parisian Phoenix staff — Gayle and Joan— came. (And the whole day was a theatrical farce of people coming and going and not seeing each other.)
My college roommate slipped out with the teenager’s dad to grab sandwiches.
And my in-laws not only came but my mother-in-law, at my request, made chicken and potato salad and brought many other goodies. Including Memmy’s fruitcake and Uncle Lee’s baked beans.
It was a long afternoon — and people kept leaving things in Dad’s casket: cigarettes, a Harley Davidson hat, flowers, a racing patch.
Sunday we arrived at work to learn we couldn’t punch in because engineering was upgrading the time clock system. I managed to ship 374 items in 296 packages as part of the Freestyle department.
And my dad— who has been struggling with Covid— ended up back in the hospital.
But then Monday rolled around and I was back in my home department folding clothes.
I was ready to try and excel as the change in shifts has been hard. The ten hour day is amazingly smooth, but getting up at 5 a.m. is exhausting — even if I go to bed at 9 p.m.
And then we changed software and the computers couldn’t keep up with the new system so everyone was working at 80 percent. Okay, I can’t prove everyone, but there’s a day shift woman who told me she always hits her numbers and yesterday she only did 108 instead of 130.
On top of this I had several fixes that I struggled to put in an extra large box and half way through the day the stats went down.
I am struggling to stay motivated and moving without my average time per fix being tracked, let alone no stats at all.
And then some guy drilled each of our table and attached new brooms and butlers. We used to share one or two brooms per valley, now we have about 20.
Many many brooms.
And around 2:30 p.m., a day shift peer was talking to someone who might have been a processing lead and she started hysterically crying for a good 20 minutes.
So I was very glad when yesterday was over. Not only was my back hurting, but my right leg is acting up again and I have intense pains in one of my right toes.
Then today started. My computer doesn’t have a keyboard or a mouse. Just a keypad. And the computer can’t “see” it. Lost ten minutes looking for a mouse until a lead stole one on my behalf.
One of my favorite second shift QC support people— we’ll call him Flying J in honor of the way he buzzes through the valleys with carts under his arms like wings of an airplane— brought me refixes! You know, the fixes that needed to be fixed and come on top of the cart instead of inside.
AND he told day shift that I liked them.
And one of the day shift support people came to see me and said she would bring me as many as she could. Then she paused.
“I don’t know how to say this without offending you,” she said.
“Honey, you can’t offend me.”
“I see the way you work and I see the way you walk—”
I interrupted her. “I have cerebral palsy,” I said. “And right now, my spine is bent the wrong way. I struggle to get the fixes out of slots 7 & 8.”
I was really moved. I am always touched when people want to help.
And today was our December employee luncheon.
Meanwhile, at home, the teenager did a ritual (at my request) for my father’s recovery.
Me and my dad
After work, we took the dog for ice cream at The Spot.
Yesterday must have been “doctors return patient messages” day because I heard from both my primary care physician’s office and my gynecologist’s staff.
But before I get to that… because that info will primarily be about the female reproductive system and how my issues in that area are compounding the impact of my cerebral palsy (and I know that’s an exciting topic), let me start with the humor in this beautiful Friday morning.
But perhaps the humor started last night with the fire drill at work. The fire alarm itself sounded like crickets chirping in a field. I supposed the sound gets lost in the depth of the warehouse.
The Bizzy Hizzy released us at 9:30 p.m. last night, which is fantastic for my aching body that is still trying to figure out what the hell happened to my hip. (Read about that here.)
I got up this morning hoping to be well-rested and pain-free. I woke up a cuddly Khloe and another phone call from my gynecologist— but I’m skipping those details for now. Let’s just say I have an appointment with them on October 22 and the person who made my appointment has a cat named Mr. Doodlehead.
Khloe
I go downstairs, let the dog out and noticed the Met-Ed truck at my neighbor’s house. The noise of the bucket truck scares the dog. We go inside. I put coffee in the Keurig.
The power goes out.
The bucket truck drives away.
Our own neighbor tries to chase down the crew. Another neighbor starts pacing the sidewalk. A third guy— yes all these people are men— stands in the yard and stares. (He’s the apparently live-in boyfriend of the resident. It’s a weird situation because they met on the internet and I was told it didn’t work but now he appears to be living there after two dates.)
After a little while, I realize I don’t want to open the fridge but I really should have breakfast so I’ll go out. My leg and spine still feel weird after Wednesday’s rather dramatic adjustment— I veto walking to the teenager’s favorite mini-mart gas station. Besides, they might not have power either.
At this point, the dog brings this from the kitchen:
Poop in a can
As if the cat food can wasn’t delectable enough, the teenager must have tossed a bag of animal poop in it. Poop in a meat can! What a treat.
I put on my shoes about to take the dog to Dunkin’ and I realize— I have no idea how to open the garage door manually. So I sit back down and work on the memoir I am proofreading.
But I need food.
So eventually I brave it.
The dog had tried to convince the kittens to play and lost that battle so she needed a pick-me-up, too.
The trip was uneventful. Except I had to drive around the building an extra time because I got to the speaker before I had my order ready. You can see me feed the dog a turkey sausage, egg and cheese wrap here.
And when I got home I realized—
I have no idea how to reconnect the garage door opener.
Now the health stuff…
I am on day three of taking CBD oil.
I am recovering from anemia caused by stress and heavy menstrual bleeding. My menstrual cramps hit me in my spine every two weeks, first for ovulation then for the actual bleeding. My spine already has issues with my SI joint because of all the years of walking crooked due to cerebral palsy. Despite my history of an active lifestyle and my current training program, the pain is getting worse and harder to treat.
CBD cream has been very successful in relaxing tense and spasming muscles in my back.
The gynecologist ordered some blood tests — I go Monday — and the PCP won’t see me until November 2 and I have instructions to follow up with my gynecologist in the meantime.
They requested and I got abdominal and transvaginal ultrasounds which revealed small growths (a benign cyst and a fibroid) in my uterus (looks like adenomyosis) which due to my age will probably cause more pain until menopause.
To alleviate this, they are going to give me the Mirena IUD in two weeks. Which is funny, because the proposed treatment for my back pain is a contraceptive device when I’m 46-years-old and haven’t been that kind of intimate in more than two years.
Fingers crossed that it helps. And that insurance covers it because it costs a thousand dollars.
I had two copper IUDs (Paragard) in the past. The first one lasted the whole ten years. The second was so painful I asked them (honestly begged them) to remove it after the first year.
The teenager and I did some cleaning today— all getting ready for the plumber to start building my laundry room on Tuesday.
The bathroom off the kitchen now looks like this:
But on Tuesday the shower is coming out to make room for a stackable washer dryer.
Meanwhile, after the gym and while the teenager was off at the diner doing her work thing, Feline Urban Rescue and Rehab foster cat tripod Louise and I did some more work on the fourth volume of the Kink Noir series by William Prystauk, a gritty erotic look at all the definitions of love with a hearty dose of darkness.
FURR Louise
Then FURR Khloe came to relieve her. Apparently I need babysitting.
FURR Khloe
At 6:30 pm, I harnessed up the dog and we went to try a $3 pumpkin spice cold brew at Dunkin and pick up the teenager at work. The woman in the drive thru gave Bean a munchkin but she didn’t like it— probably because it was round. This mutt can’t eat round items.
And then old neighbors stopped by and we got to visit and hang out in another neighbor’s yard while there was quoits happening.
When I turned up at the Apex Gym today for my first session of the week, I was accompanied by the teenager and her dog. They were both impressed— and in the dog’s case confused— that my trainer Dan was wearing his baby.
I am always impressed with the different bodies I see at the gym and the attention both trainers give to their clients.
There was a woman at the gym finishing her session when I arrived. She was working hard with some dumbbells, with her back to me. She was older than I was, and overweight, probably at least obese by BMI standards (because I am overweight by BMI standards).
But she was uneven, with 80% of her excess weight in her legs.
And just like with me, Dan supported her and challenged her as if we were athletes. You could tell she was proud of herself, and I was proud of her.
And I couldn’t wait to tell my trainer Dan that I can already feel my body moving better. In his eyes, he calls it “a little increased mobility” and to me, I feel like my knees are moving the correct direction.
I told him that I got to pick at the Stitch Fix Bizzy Hizzy and covered about 6,000 steps and pulled 216 items in less than three hours. Now those aren’t stellar numbers, but I haven’t left QC in months. And I didn’t hurt.
If this Apex experience doesn’t teach me to participate in exercise and strength training daily, nothing will.
Today’s workout t-shirt was “let’s hit the bar” by The Fitness Tee Company and my trainer Dan let out an enthusiastic battle cry. We did hit the bar, and we added weight to it. I really enjoy bench press.
In other news, I listened to the latest podcast from the NYT Daily Sunday Read, “The Man who filed 180 disability lawsuits.” It looked at the “industry” of people hired by lawyers to find non-ADA-compliant businesses. And sue them.
I need to digest this more, but the reporter interviewed a small restaurant that almost lost everything because of such a lawsuit, in what seemed a situation where a new restaurant just had everything go wrong.
But the reporter also interviewed the litigant who said businesses have a responsibility to know the law better (my note: it’s almost 300 pages) and that being disabled is expensive so these lawsuits help pay for his equipment and care.
Changes are brewing at work. Tomorrow I learn the infamous mailer machine and QC Valley 0 has been transformed into a test site to see if QC centers can prep their own boxes as they fold each fix.
I’m terrified of this. I have a really awkward relationship with packing tape.
My body turned to me as I went to my car after work today, and as I fiddled with the radio (calling up Natalie Merchant on Spotify singing Space Oddity), my body said to me,
“Jesus, woman, what are you doing? We need to talk.”
But seriously.
Let’s start at the beginning, shall we? But we can’t spend too much time on all this as it is 1:30 a.m. and my aching body craves sleep.
The teenager was up fairly early today so I suggested she and our almost 1-year-old pit bull/mastiff/black lab puppy walk with me to the gym, about 5 blocks away.
Now if you’re new here… I’m 46 years old, a former newspaper reporter. I have an amazing 17-year-old daughter. Her father and I separated two years ago but he lives nearby and is still an important part of our household. I have cerebral palsy. He has a club hand. I have recently started a quest to learn more about my body, restart my bodybuilding commitment (I was really into it six years ago) as an alternative to traditional physical therapy, and hopefully lose the 20 pounds I gained stress eating to cope with the toxic workplace of the last nonprofit I worked for.
So, the teenager, the dog and I walked up to the gym. F. Bean Barker is learning new manners everyday and the guys at the gym thought she was a beautiful dog.
And then the focus changed to leg day. Now, on upper body day I get to train like a normal person. On lower body day, my poor trainer has to balance my physical deficits with my desire to kick ass.
Or maybe I’m just as awkward both days, and I just never noticed.
Today was session six. It’s the last week of two sessions a week and next week we increase to three.
Please note: I have been in gyms lifting weights since college, which was about 25 years ago, and in recent years I’ve been in physical therapy to learn to walk, for balance, for the strain of my lumbar region caused by trouble with my S1 joint and my broken ankle. Every body is different. Every ailment or disability is different. It is a quest to balance what works for you, what your body needs and what hurts.
I firmly believe that nothing fixes the body like the right exercises. But for people with disabilities or health issues, it’s hard to recognize what pain you need to work through and what hurt is bad. As a weight lifter, I know muscle recovery pain. As a person with a disability, I often experience burning pain.
As a society, I feel like we invest so much money in medical tests, mental health, drugs, organic food, but we don’t want to pay for a trainer.
My trainer is getting to know me. He knows how to observe me. He asks questions about my mobility. We test exercises by going easy at first and adjusting them based on my performance.
And he reads me well.
There are times I can tell he’s afraid of pushing me too far and then I do the exercise and he makes it ten times harder because I surpassed his expectations. This makes him a good trainer because it means he’s testing my basic form and strength so I don’t get hurt. And he readsmy body language to see how I’m doing— not relying on my words.
A good trainer has to push you out of your comfort zone. But he also has to make sure everything’s executed for best impact and in a way that you don’t get hurt.
I have to admit, I hated him a little today. But I also love his full body approach. But when he tells me to do sumo squats with a 15-pound dumbbell and my toes pointed out AND make sure my knees “follow” my toes… I don’t know whether to cry or punch him.
It’s the gym— both those feelings are valid.
But let’s examine the issue. My knees face in.
This means to perform the motion he has requested, I need to move one foot at a time carefully into position. I need to really concentrate on balance. As I move, I need to keep my head up, focus on stretching the knees to position in line with my toes (which is not the way they go) while holding a weight and trying not to fall.
I was dripping sweat by the end of this session— before he hands me a kettle bell to end the work out with kettle bells swings.
When I got home, I made a massive high protein vegan pasta. See me make it here (this can also be my official “before” video.)
I ate 90% vegan today. Only animal products I had were half and half for my coffee and a pack of beef jerky at work. I almost had iced tea with local honey but the teenager spilled it when I left it on the dog crate.
This was dinner:
Speaking of dinner— tonight at the Bizzy Hizzy my team competed in the Stitch Fix olympics. We won the gold medal in the egg toss. I was relieved they weren’t real eggs.
In other news:
I almost started editing William Prystauk’s latest novel in the Kink Noir series.
My Poppy Z. Brite books have arrived.
I hurt. I hope it’s the good hurt.
My friend Joan not only brought us old linens, but scored a cat carrier and animal crate at a yard sale.
The full moon is a few minutes away but its pull has been evident for a couple days. My recent health struggles, my employer giving us random time off, and today the dog ate my latest set of AirPods that I bought less than a month ago and emptied my favorite Coach leather wallet I bought in 2010 for my first excursion with my beloved M.
It took about 30 minutes to locate my money, shopping club cards, credit cards and various ID. Not to mention she destroyed my AmEx.
The teenager got a toll violation in the mail for her Cape May road trip. The toll officer yelled at her for stopping to pay the toll because the equipment read my old transponder from the Altima. I had meant to return the damn thing but never got around to it.
She also broke her phone charger.
I also had the misfortune of having to cut off someone who left room for me to merge and then changed his mind. The situation had me worried he was going road rage-y.
But let’s celebrate all the good news.
It was an amazing day. I went to Grocery Outlet and bought my favorite Cabot cottage cheese. I got a free soda at Wawa.
I had dinner with my favorite nurse from StitchFix who left the company to “do” hospice. It was so nice to see her.
I came home and registered my first two ISBN numbers to Manipulations(printand ebook). This is the first novel in the Fashion and Fiends series.
I edited some bios, created at Ingram Sparks account, updated my ISBN info at Bowker, downloaded a bunch of user guides and wanted to vomit.
I approved the cover concept. The proofreader signed off.
I assigned prices.
And I pledged that I will donate $1 to Feline Urban Rescue and Rehab for every print version of the book sold. One of the minor (but very key characters) in the novel is Zut the tabby, modeled after Zoot, my tabby of 16 years. Zoot was my familiar as it would be called in witchcraft terms.
The official publication date is September 11, which is my husband’s birthday. Even though we’ve been separated two years, he had always beenmy most loyal supporter when it comes to my fiction.
I have received encouragement from published authors Jonathan Maberry and Kathryn Craft, but no one encouraged me like Darrell did.
So thank you. There are so many good aspects to the 20-plus year relationship I had with you and that is only one.
And the goal is to get the next one out on my partner Gayle’s birthday.
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.
Below please find my original interactions from the first memoir, Karen, by Marie Killilea: Starting the Karen Books.
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
Speaking of Bill, my flower workshop got postponed last night, so Bill, fresh off of jury duty, came down to catch up and have dinner at the always charming Porter’s Pub in Easton, Pa.
Rib eye with Jameson’s Demi-Glace
Armed with the news that my iron is low, he bought me a steak and a lemony-smooth gin martini.
Upon arriving home, I finished taking out the garbage and recycling including two more 13-gallon trash bags from teenager two’s room. It looks like she’s officially ghosted me, and that makes me sad.
And I let the dog sleep with me. And as my room is the front room, she heard every noise in the neighborhood.
Angel Ackerman 