Today marked my first lower body work out with Dan at Apex. I did something I rarely do and wore a little tennis style athletic skirt to the gym. I don’t like wearing shorts. There are two reasons why.
1. I honestly don’t like my flesh touching various surfaces: hot car leather, wooden chairs, the concrete if I sit on my steps, of course “thigh rub.” You get it.
2. But I also don’t like to see my lower body in motion. It’s a visual reminder of my physical issues.
So exposing my legs to a relative stranger was a way of me making myself vulnerable. But if Dan is going to monitor and critique my form, he can see my knees.
Lower body. I was so… not anxious, not scared. Maybe trepidation? We did pretty standard upper body exercises. Easy starting point. Dumbbells. I was happy with it. Very happy. (See more here.)
Dan brought his six-month-old son. What a happy, charming, beautiful baby. He didn’t mind seeing my knees.
And right away, Dan put me at ease. I’m impressed by the depth of his knowledge— my physical therapists have explained the same info to me so I know he’s done his homework on normal physiology.
Our exercises yesterday included a supported squat using some overhead ropes (that was amazing! I felt like I could move like a normal person. I could have done that all day.); some mild lifts with a plate that was like a full body deadlift, slowing stretching out the whole self; and some squats with a resistance band moving up and down from a bench. Many of these movements required great concentration on my part but I knew from past physical therapy that he was nailing it.
He apologized for not working me harder but he wants to focus on getting everything moving and flexible again so I don’t get hurt.
That isexactly what I need right now. I shouldn’t be working out hard. I just want to establish the habit, get my metabolism working again, and oil the machine, so to speak. I am so thrilled. Giddy.
And I walked slowly home with no falls.
As my rest period at home, I finally wrote the solicitation letter for FURR’s Coffee and Kittens pop-up cat café August 15 at Forks Community Center. The organization is working hard, my former employee and friend Janel and I are brainstorming away and reaching out to potential sponsors.
I hope to have FURR volunteers give five minute talks or demonstrations on various cat topics: TNR, basic cat care, how much cats can reproduce, declawing and cat scratching behavior, working with hissy spitties, cat body language, trimming nails, seniors for seniors, why kittens aren’t easy.
Activities will include live kittens in play pens to cuddle, cat story time (I will read cat stories), and musical chairs with cat-themed music. We hope to have some raffles— the chance to name some kittens, hopefully some prizes. And cat merchandise for sale.
Last night, after my fall on Monday, I returned to work at the Stitch Fix Bizzy Hizzy. I was assigned to receiving NAP (non-apparel), specifically binning shoes.
I’ve come to the conclusion that most jobs at the Bizzy Hizzy are mind-numbingly boring when you first do them, until you develop a rhythm and master the task.
Shoes go on the bottom shelves in NAP so you get a little stool on wheels and get to scoot around on that, getting up every 30 minutes or so to refill a cloth tote/cart (like you see in a laundry facility) with more shoes.
Sitting on the stool kills me— my back doesn’t like it and by the end of the night by butt hurts. But like anything, eventually you find ways to get used to it.
I get so sick of the same old tank tops last night I wanted to wear my Goth troll doll t-shirt. It comes exactly to the waist of my Stitch Fix Gaiam yoga pants, so it should be fine when measured against the no crop top rule. But to be safe I layered a longer shirt under it.
I think I binned almost 800 pairs of shoes. The section was packed pretty tight.
The first thing I had to do upon arrival was grab a pallet jack and move a cardboard gaylord of processed shoes across the warehouse from inbound receiving to NAP. Now the teenager’s father spent most of his career as a shipper/receiver so I’ve heard a lot about the utility of pallet jacks but I’ve never used one.
And Stitch Fix uses primarily plastic pallets so they are lighter than wooden ones.
And I did it. And texted my family excitedly. To which I received this text from the teenager:
“Oh my, that’s cool. And who TF let your beat up ass use a pallet jack? ‘“She can’t handle her own two feet… here’s a pallet.’”
I cackled in the middle of the warehouse as Siri read that one to me.
Somewhere in the second half of the night, I had the opportunity to relay this to my shift supervisor who stopped by to check on me. I respect this woman, did almost instantly. Not sure why— probably mostly because of how she dresses and carries herself.
(And she is a Stitch Fix client and wears a lot of Stitch Fix clothes.) Personally, I like when people visibly support the company’s that employ them. I feel it’s good for morale.
We had a chuckle about the pallet Jack comment. I showed her the damage on my shoulder (and she winced). I shrugged it off as no big deal and told her it was part of my life. Then she said something that touched me:
I’m sorry that you have to experience that.
She talked about her struggles getting her mom to advocate for her health as she gets older, and that she hopes I’m a good advocate for myself and that as I grow older I listen to my daughter.
I hope so, too.
After final break, my immediate supervisor stopped to see me. She also asked how I was and winced when I showed her some of my scabs.
These exchanges made me feel valued as a person. While Stitch Fix as a company is driven by metrics, which they have to be, I’ve found that at least in my nine months at the Bizzy Hizzy, the culture tries to make people feel respected and appreciated as individuals and part of the team.
Speaking of the team, the Bizzy Hizzy has frozen hiring on day shift so growth will now focus on second shift (“midnight society”). My supervisor and I discussed this briefly and I said I hope this doesn’t change the culture of our shift. We’re closer, more versatile and have more fun than day shift.
Because the team is cross-trained and understands each other’s jobs, I feel like that improves our ability to work together efficiently. Because we’re a fraction of the size of day shift, we know each other and really focus on goals.
Before I continue, let me get the usual disclaimers/introductions out of the way.
Like many people, I had a rough 2020– I’m actually grateful to Covidfor slowing down my life and allowing me to survive some severe emotional stress that caused me to have high blood pressure, develop a bad comfort eating habitand end up anemic. I had a difficult job experience, lost that job, and now work in the Stitch Fix Bizzy Hizzy and deal with my daughter’s crazy dog, my stubborn cockatoo and a bunch of foster cats. I’m forty-something, a single mom, 20 lbs overweight and struggling to understand my body, specifically my cerebral palsy.
My day started with chasing the “pig pony” dog Bean (we call her that because she snorts like a pig and is the size of a small pony) around the neighborhood because she decided to jump the fence and ignore her recall commands.
I’m in my kitchen now, eating a public-school issued bowl of Cheerios with an out-of-date white milk leftover from the teenager’s recent school dates. I met with my trainer today (and my friend Janel who is helping me set up the FURR Coffee and Kittens event at Forks Community Center August 15).
I headed up the hill to Apex Training to meet with my trainer Dan. I finally remembered to ask Dan if it’d be okay if I wrote about him and our work together and he said yes, so I no longer have to be sneaky.
I’m comfortable with Dan. He’s laid back but he knows his stuff, understands the movements and the physiology, and keeps a careful eye without making you feel stared at or inadequate.
He almost seems apologetic that we’re going slow and using 5 and 10 pound dumbbells and not lifting at a pace that makes it a cardiovascular event. But that’s what I love! The anemia, when combined with the cerebral palsy especially, makes it so easy to get tired and clumsy and hurt oneself.
Today, we did some upper body work. 30 minutes, slow and steady. 3 sets of 2 exercises each. Pretty standard way to set up a 30-minute work out hitting the triceps, biceps, chest and upper back.
Five years ago when I did this, I did a lot of cardio, did calisthenic ab exercises every day and did ten to fifteen minutes of lifting focusing on just one muscle (i.e. biceps or triceps) not the whole group.
Like I said, I know what to do, but I’m a person and people get lazy. I need Dan right now, as I’ve said, for several goals:
Restart the consistent habit of training.
Improve strength, flexibility and agility.
Build muscle and tone body.
Many of us tell ourselves we can save money and do it ourselves but the reality is there is a big difference between we are able vs. the commitment of we will.
I fully intended to eat a banana every day to get more nutrients into my body as I recover from anemia. Did I?
Does it look like I did?
But back to the training… I find the actual activity of lifting, when I am working with a class facilitator or fitness trainer, meditative. Everyone should focus on their movements when strength training, but I really have to with my disability. Focus is required to make sure all the body parts move as they should. I have to count the reps, remember to breathe, and control the motions all at the same time.
When you are doing all of that, your mind empties. And you just flow with the movements of your body and the feeling in your muscles.
Like today was “oh hello triceps, are you still under all that arm jiggle?”
When I left Dan I was sweating. I was limber. I felt invincible. I was walking home reminding myself how powerful I am.
I lost my balance on the sidewalk and just fell about half a block from my house.
My right arm is scraped from the back of my shoulder almost to my wrist. The upper shoulder stings the worst. It’s been two hours and it still stings. I also bounced on my hip and upper thigh— so that is already starting to bruise.
I called out from work tonight. Based on where I’m at in my menstrual cycle and the summer sun, I’m going to blame anemia for this lapse in balance especially since all day yesterday I had no energy. Anemia is awful. Anemia with a mobility disorder is a nightmare.
Today I woke up at 8:30 a.m., before my alarm, ready to start the laundry, unload the dishwasher and check on my split pea soup. I had my initial meet-and-greet, evaluation session with my new local, small business fitness trainer at 11 a.m.
At 10:30, I went down to the basement to get the linen wash and hang it on the line.
Oz, the big, scared and stupid cat bolted through my legs and out the door. In his mind, he was going to go eat some grass and relax in the sun.
Except the dog saw him escape. So he ran around the house and into our neighbors yard where our other neighbors were breaking up cement manually.
I was focused on catching the dog and they were very keen to tell me there was also a cat. I knew that cat would be sitting and waiting at my neighbor’s back door.
I catch the dog and clip her to the neighbor’s tie and turn my attention toward retrieving my daughter’s cat.
Grab the cat while the dog yowls in confusion. Toss him in the house, grab the dog’s leash, walk the dog across our small yard, and then watch her corner Oz and jump through the open window to chase him around the house while still wearing her leash.
By the time I crated her, I was already dripping with sweat.
And I barely had time to eat (after all, the wet laundry is in the basket in the yard) so I spoon some of my current favorite Cabot cottage cheese into my mouth and grab a pack of salt and vinegar almonds (both from the Grocery Outlet, of course) and an unopened bottle of plain seltzer.
I walk the five blocks to the trainer’s gym.
He’s practicing his golf swing when I arrive. He knows my name. We chat. My seltzer explodes all over but I manage to minimize the disaster. His name is Dan. He has an infant. And dogs. Both trainers have kids and dogs.
He has similar problem areas in his hips and back from an accident. He gives me the usual rundown— we’ll start slow so we can build a foundation, results take time. We talk more. I tell him my most recent experiences with strength training/weight loss/anemia. I show him pictures of ripped, underweight me five years ago.
“So you know what you’re doing,” he says.
“I do, but I need someone to watch my form so I don’t hurt myself and motivate me as I’m still struggling with the emotional repercussions of a really bad work experience.”
“I can give you some guidance and a kick in the butt,” he says.
“That is what I need,” I reply.
I tell him my hopes: I want to start with light workouts to develop the habit and rebuild my energy as I recover from anemia-related fatigue. Then, we focus on full body weight training at so I can be as strong as the woman in the picture, but I don’t care what the scale says. And maybe we’ll work toward running a 5K. And if the relationship works out, I might pursue my dream of a bodybuilding hobby. Not competitive. Just for myself.
I think I saw him visibly relax. He liked that I understood what realistic expectations are and that I want to put in the work long term.
He gives me weights. He increases them after the first set of shoulder presses. He mentions that we’ll be able to capitalize on my muscle memory and that I have pretty good form.
I explained my lower body issues, and we did some body weight squats. He seemed pleased with my form and my concentration.
We talked about different things we could do, and he evaluated me in several exercises including one compound set I really liked, best described as moving from a sumo squat (with dumbbells) to a bicep curl using the hips instead of the back and finishing with a shoulder press. It loosened all sorts of muscle groups.
I felt invincible.
He explained that he would use this observation and discussion to build my program as he didn’t design anything until he met the client. I chuckled.
This is an informal update vaguely and disorganizingly (that’s probably not a word, but I like it and it’s how I’m feeling) connected to my series about my cerebral palsy.
It’s not as “official” and well-crafted asI would like as some household/parenting issues greeted me as I walked in the door and I found it hard to recover once the dog started refusing to get in her crateand I discovered the teenager’s floor with multiple piles of kitten vomit, into which I stepped barefoot.
I finished the sequel to Karen by Marie Killilea today— With Love From Karen. That is another blog posted which I started but have postponed due to other events of the day more personal.
Late last night, I reached out to a local personal fitness trainer.
For those of you unaware, the average physical therapy can cost $350 per session, with the uninsured paying $125. If you have, like I do, high deductible medical insurance, this can add up to several thousand dollars in as little as a month.
Been there. Done that.
My amazing chiropractor (Nicole Jensen, Back in Line Wellness Center) bills me $125 a session when she gives me some brief physical therapy, advice and cracks every f*cked up bone in my body.
The high end of average cost for a personal fitness trainer is $70 per session, according to Google.
Six years ago almost to the day, I embarked on my first weight loss journey and shed 30 lbs in six weeks and looked like a skeleton.
By autumn, I looked like this:
Yes, the shadow of a person lifting two pound weights with me is the now teenager as an eleven-year-old.
I have two fitness dreams:
To run a 5k
To be an amateur body builder
A local business, a fitness trainer only a few blocks from my home, has a summer special and good reviews on the internet.
Goofy crop is to obscure the identity of the trainer until I get permission to post.
I reached out with this message:
“I have quite the history of on again/off again weight training.
I went through a very emotionally traumatic loss of job experience in 2020 and turned to stress/comfort/ just plain bad eating and have gained 20 pounds. And stopped training.
I need to regain my discipline so I am hoping to see if you might be a good fit as a personal trainer— theoretically one session a week and I could maintain the effort at home.
I have already improved my diet, but the damage includes anemia so that makes it hard to work out especially in this heat.
I work second shift in a warehouse.
And perhaps the most important issue— I have mild cerebral palsy in the lower body so it’s super important that I keep my body strong and flexible.
I have two dreams— to actually run a 5k and to perhaps pursue amateur body building.
Please respond if this is something you might be willing/comfortable with/knowledgeable enough to undertake.
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.
Another piece in my understanding cerebral palsy series
Technology can offer an opportunity for a great equalizer or perpetuate a divide. In both cases, there is a complexity that arises.
That sounds vague.
But allow me to try and explain.
My friend Nancy, a talented poet and essayist, is blind. She has seen the rise of all sorts of technology from computers, to tablets, to the gambit of “smart” devices. She has experienced that when looking for accessibility, those helping her (whether it be staff at organizations for the blind or everyday customer service employees) view people without what they deem standard technology— smart phones, online banking, PayPal, computers— as lazy, poor or stupid.
I’m thinking about this, in part, because of the podcast A is For Abled. I listened to the debut 2019 episode (recorded on October 6 which the podcaster announced is world cerebral palsy day) at the Stitch Fix Bizzy Hizzy last night.
I am realizing more and more that platforms that YouTube, Spotify, Facebook, etc., provide more and more opportunities to connect with real people so many of the “products” people put out there are amateur. And I am not knocking on that.
But when people talk about there experiences you need to keep in mind that memories are not the best source of fact.
The first episode of A is for Abled discusses the host’s background— Kyle, his sister Cheyenne and his mother have a pretty comprehensive discussion about their family attitude toward Kyle’s cerebral palsy, his upbringing, public vs. private school in regards to disability resources and quality of education, sibling relationships, the various therapy and surgeries Kyle has had and society’s reactions to disabled children and more specifically Kyle’s gait, which they call “swagger.”
Kyle was 32 in 2019, so this makes him more than a decade younger than me. His mother was 19 when she had him and he is the oldest child. They are also African American so they make some comparison/contrast between society’s reaction to the disabled and the reaction to African Americans.
Apparently the show has completed two seasons. And it sounds like Kyle’s condition is very similar to mine.
Between his family, his therapy, his various exercise classes that his mom encouraged him to try (yoga, aqua aerobics, tai chi), private school and surgery, Kyle had a lot of interventions I didn’t have.
Things A for Abled pointed out (I have not fact checked these statements):
Like Karen Killilea (if you don’t know who I am referring to I talk about the Karen books here), Kyle had surgery (twice) for his hips to straighten them.
People with cerebral palsy often develop arthritis in their thirties.
People with cerebral palsy get worse as they age because the muscles and tendons continue to tighten. That’s why physical therapy and stretching is so important.
Hot Yoga not only provides the much-needed stretching and flexibility but also the heat automatically loosens the muscles.
To explore A is For Abled, find their website here.
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.