Welcome February or “Wow, it’s been a month!”

I didn’t realize– or perhaps deep down inside I did– that I did not write in this blog at all in the month of January. I have written in the Parisian Phoenix blog, on my Substack, for the Lehigh Valley Armchair Substack, for Kiss and Tell magazine, for press releases and social media…

But not here.

I have spent much time applying for jobs, going on job interviews, and following up with second interviews, and working with my authors at our small publishing company, attending networking events, meeting with other writers and professionals, and grocery shopping at discount retailers like Grocery Outlet and the Dollar Tree.

(Grocery budget has been $25/week, but this week I splurged and bought a baker’s dozen bagels for $9.50 at Panera because they have a sale on Tuesday, and I used my CVS coupons and their sales to buy 2 boxes of KIND breakfast bars, a box of Grape Nuts and a box of Cocoa Krispies for $13.)

My personal favorite cheap meal this month has been these gnocchi from the Dollar Tree, served with a cream sauce I made with butter, lemon, and some artichoke hearts (using the oil they were marinated in). The artichoke hearts and the Barber Foods Chicken Stuffed with Broccoli and Cheese came from Grocery Outlet. The whole meal cost me about $3 per serving. And I used up some half and half that was on its last leg.

If it weren’t for car insurance for the teen and heat (I’ve been keeping the house at a balmy 60 degrees since I had to pay for $600 in furnace repairs in December), I have enough clients to keep me afloat indefinitely even after unemployment runs out in about six weeks. But the uncertainty of it all is hard. My biggest faux pas since my lay off was dropping the oil cap into the engine compartment of my car while topping off my fluids before a winter storm.

Luckily, good old Southern Candy and her son came to my aid and he fished it out for me– took him 45 minutes and the promise of the $50 cash I had in my wallet. I could hear my Dad laughing the entire time. I swear he’s been playing practical jokes on me from the afterlife with all of these little mechanical problems.

Like he’s checking to make sure I can take care of myself.

Sometimes, Daddy, I don’t know.

We had two snowstorms in January. During one of which, the first actually, one of the Teenager’s college friends spent the night. (Photo: Here they are at about 10 p.m. having a snowball fight with one of our neighbors, a high school friend of the Teen.) The College Friend hails from Los Angeles, so this was her first snow. And we bundled her up in home-knit hats and gloves and sent her out to shovel and play in my snow boots. Because Lord knows I am not going out in that if I don’t have to.

I drove over to the Bizzy Hizzy, the now nearly empty Stitch Fix warehouse, to show my daughter the old Freestyle and Pick carts that had been set out for the trash. The carts are laminated, corrugated cardboard so I imagined they deflated pretty badly in all the rain. I explained to her how we used to pick, and showed her the pencil cans we used to hold our water bottles and the heavy-duty page protectors that held the pack slips after installation of the Big Ass Fans blew them out of the carts. Three years, evaporated and erased.

I’m still working out with Andrew at Apex Training and meeting my strength goals even if I am failing at my weight goals. The Teen says I need to be more body-positive, but I know I am regularly showing more than 500 garbage calories into my body for the emotional sensation of it. And I also know that as someone with heart and mobility issues, being overweight is not helping.

In good news though, because I share so much about my journal both as someone with cerebral palsy and someone who finds strength training cool and empowering, several other members of my gym are now setting strength goals and strength training into their routines.

While visiting Nan the other day I got to meet a really cute dog. She’s a French sheep dog. Nan and her owner both told me her breed and now I don’t remember. I asked Siri and she suggested a Wheaten Terrier or a Goldendoodle and both of those are wrong. So, I googled French sheep dog breeds and it suggested a few and I immediately recognized the word “Briard.” And it is indeed a dog that would get stuck in briars.

And last week, the Echo City guys and I went out to Pints & Pies for burgers for the guys and pizza for me. It was a very tasty pizza. I have been dreaming of it and the cold Yuengling draft I had ever since.

Pregaming Thanksgiving

If you miss my ridiculous banter, you may want to visit ParisianPhoenix.com because most of my activities now relate to the publishing company because I’m trying to develop enough business to make a living now that Stitch Fix has closed its Bethlehem warehouse.

Speaking of Stitch Fix, one of my friends who has gotten fixes religiously since I started with the company got an email today that whatever warehouse shipped her fix instead of ours did not scan the package as it left the facility so neither Stitch Fix nor the carrier has a record of it. Therefore, if she does not receive a fix today or tomorrow, she is to let them know as then they have reason to believe it is lost.

Yup. Did I ever mention that we were the most efficient, safest working warehouse in the network?

Random Cat Photo:
Touch of Gray

Anyway, back to my day. I started my day assisting the Teenager with course registration at her college. She is studying BS psychology and had a good plan. She had courses and backup courses and I planned on catching up with my NaNoWriMo word count (if you don’t know what NaNo is or you have opinions about the NaNo controversary, my take is here) before meeting Nan and a poet friend.

She could not get into ANY of her classes, nor ANY of her backups, nor ANY classes at all in her department. With my help, we found Intro to Women’s/Gender/Sexuality studies, Theory of Religion and Intro to Sociology. She’s also hoping– but probably doesn’t have a chance–to get into astronomy. The professor was on of her pet-sitting clients.

With this new course load, I think she should apply for an interdisciplinary major of her own design, the new BA in Cult Leadership.

I managed to pull 500 words for my novel before heading out to get Nan.

I decided to give Nan her “Christmas present” early. I put that in quotes because I would have gotten it for her regardless of the season. It kept popping up on the available Amazon Vine items that I can review. If you’ve heard about Nan enough, I probably don’t have to tell you she LOVES NASA. She has followed the space program since before man landed on the moon.

Nan won’t go out for the day if there’s a NASA event going on. She has cable simply so she can watch NASA TV.

I got her a decorative desk piece that has an astronaut on the moon with some sort of moon lander or rover. And the space suit has a ledge where you can place your cell phone and the lander thing is a pencil can. The most impractical gift for a blind person. It’s a sculpture you can’t see, with features for items you don’t use.

I’m relieved to say– she loved it. She loves that she can put her two pens that she keeps for sighted friends on her desk. She loves that the sculpture has enough detail that she can look at it. And she loves that for the first time, she has something space-themed she can display.

We took it up to her room and arranged it on her desk and headed to our appointment. We had made arrangements to meet a new friend, we’ll call her the Italian Poet. We were workshopping some of her poems.

Now here’s some motivation/inertia for you: If you write, paint, photograph, whatever, you must find others who share your artistic sensibilities and draw from their energy. Sometimes you share feedback, sometimes you seek inspiration together. Sometimes you learn, sometimes you teach. But the union of people in a space can build spirits and keep you going.

And after Italian Poet encouraged me to pursue my educational goals and I prodded her to finish her Ph.D., Nan and I embarked on our annual tradition: Gobbler bowls at Wawa.

We live a simple existence. Then we taste-tested a peppermint watermelon sparkling water. Nan did not approve. I did. But, as Nan says, I do seek out the weird stuff.

The Teenager used Nan and I for a photography project.

I went to the gym for leg day where I squat 120 pounds on the barbell for eight solid reps. Definitely liking that!’

100 by Christmas

Yes, that’s Andrew and I

My trainer Andrew announced that he thought I could bench 100 lbs by Christmas. This was after I benched 80 lbs for three solid reps. It was a new personal record for me and another reinforcement that I have regained strength in 2023, despite the health issues.

I told him that after the Christmas season challenges we already have listed on the public goal board at the gym, we need to add the next goals for my birthday in late May and another set for my 50th birthday in 2025.

But, even while my strength increases, my stress eating continues. Now, I aim for 1300-1500 calories a day so that even if I “binge” I don’t do too much damage. Nowadays, I often hit 2000 calories only on a bad eating day.

Today for breakfast I did not go for my usual bagel with cream cheese, avocado or even more decadent brie. I had one serving of Cabot cottage cheese (it’s very decadent and smooth), a golden kiwi, about a cup of raspberries, and a cold matcha latte, my style, made with sweetened matcha powder, unflavored whey powder and unsweetened, organic coconut milk that was delightfully hearty and robust. The breakfast came to 400 calories– including the cup of coffee with half and half I had four hours earlier (and come to think of it, I never finished it. Not only did it have lots of satisfying fat to tide me, but it also had 27 grams of protein.

I have a networking event I plan to attend later in the day, at a brewery, so I had lunch at 2 p.m. and decided to stay with the high protein low cal effort. I used a whole wheat tortilla to hold almost a cup of chopped romaine lettuce and a serving of Penn Valley homestyle chicken salad. I added a small glass of diet Ocean Spray ruby red grapefruit juice and a dessert– Chobani zero sugar Greek yogurt. That meal was a little more than 400 calories and also 27 grams of protein, but I did not finish the yogurt.

Tomorrow I have a working interview, my second, for a job where I would need black pants. So, yesterday Southern Candy, The Teenager and I went to the thrift store. My four pairs of pants came to about $8, and three of them fit.

What makes today a good day might change tomorrow

This week presented many challenges. Monday I was hurting, probably from too much computer work during my 10-hour weekend editing sessions each day. I survived Monday, but barely, only to learn that Tuesday I would be moved to a different station in the Stitch Fix warehouse.

Change is never easy– but in this particular instance, as a person with a documented disability and doctor-derived medical accommodations, I struggle in my normal environment to perform at the same level as an ordinary employee. And that’s my job, to do the work, with a reasonable amount of help.

The main consideration used by management to determine assignments on the warehouse floor is table height. Is the work surface the appropriate height to match the ergonomic needs of the employee? In my case, my performance also relies on which side of the line I am on and who is “on support” that day. I work on “the B side” which does not mean I am not a radio song. It means the conveyance system that moves the fixes to the next stage of the process is on my left side.

I rely on my left side for balance. Therefore, to minimize potential issues with my hip and ensure my balance and stability, I need to work on the side where I turn to the left to put my boxes on the line.

My original table assignment for Tuesday was on the right, or the A side.

Requesting a B-assignment got me moved from line two to line four, which meant I would no longer have my regular support team. (That’s the role of the people who deliver work and supplies to those of us who fold the clothes.) I have been told that it’s my job to remind these folks of my medical needs. And they don’t always like that. So it makes me uncomfortable. Because in my view, it’s not my job to tell someone else how to do their job.

And to make matters more fun, it’s up to the individual to decide how to provide my accommodations. The deviations are small, but the impacts are major. The cart typically arrives with eight fixes on four shelves, with five to eight boxes lying horizontally on top of the cart. Most people move the boxes (I often take them) and pile the work from the bottom of the cart on the top. Some people even put the fixes from the two bottom shelves and place them in boxes on top.

I don’t even ask that pack slips be placed with them. I have myself trained to flip them to match the new order. Which confuses everyone but me.

This particular day, my support person, who I believe is a delight, so this is no reflection of who she is as a person, decided she would place the clothes around the boxes without moving the boxes at all. She tucked them all over the boxes. Which meant if I moved the cart to my station or reached for the boxes, the clothes fell on the floor. How does this help me? Keep in mind– I go through three carts an hour.

I eventually complained to a supervisor and said something like this:

“I know it’s too late now, as we’re closing, but there really should be a system in place where Stitch Fix defines what the accommodation is for the doctor’s orders, because it really shouldn’t rely on individuals who don’t understand the disability. And maybe it’s a violation of privacy, but those of use who need the extra attention should be arranged together so support automatically knows if we’re in that section, we have an accommodation and it would also cut down on people requesting accommodations when they haven’t done the paperwork.”

The supervisor said that was a great idea and lamented that I hadn’t mentioned it earlier. I didn’t mention it because it’s basic logic.

Somehow, I survive, and I make numbers. My body is so twisted I can feel that if I move wrong I’m going to pull a muscle in my lower back. But it’s okay because I have the chiropractor on Wednesday.

And then I get the table from hell on Wednesday. It’s the right height, right side, good support people. But it’s a front-of-the-line table, so I have to keep pushing the boxes toward the end. The fan keeps blowing my pack slips, which means I need to tuck them under my craft paper roll instead of on my laptop keyboard. But I keep forgetting, which means every cart I repeat chasing a paper, and tucking the others under my craft paper roll. My scanner keeps disconnecting from my computer. And if I need to go get a large box, which is common now as we are transitioning into winter clothes, I have to walk to the back of the line to get it.

These things add ten to thirty seconds to every fix. That’s 40 minutes over the course of the day. And I finished at 91% which is bad enough to get me a warning. And so I’m stressing, which tenses my muscles, and since my neurological condition already creates issues with my muscles not relaxing just makes everything worse.

And midday, the leaders got out an inflatable beach ball so every one could bounce it around to each other. That upset me more because I don’t have time to have fun. How dare they think I might be able to survive this and have fun?

Nicole Jensen of Back in Line Chiropractic aligned my lower body and stretched out my legs and I left her able to stand up straight and move my legs without stabbing pain.

This is where the difficult mental part of disability takes over. It’s so much easier to give in, to rest, to eat ice cream and watch TV and be done. But I knew my body needed to stretch and move in order to correct whatever issues had been caused by my misalignment and muscle tightness.

My brain and my muscles don’t have good conversations– so it seems like I can to manually perform a motion for a while to teach my body how to do it, even if that is reminding it how feet go or how a gait is supposed to work. That’s why I go to the gym. Not just so someone forces me to exercise, but also so someone can make sure I am using body parts correctly.

But I have to tell you, I dreaded going to the gym. I had been in pain all day. I wanted to take a hot shower and go to bed.

Andrew texted. He had a situation at work. Maybe the universe thought I needed a break. When Nicole works on me after such bad body pain, I’m often achy the next day.

Then Thursday went fine. Great even. But the pain crept back Friday, not nearly as bad but it took me most of my day to get my metrics at work to solid ground. And Friday night I went to the gym, and despite how I was feeling, I had fun and did well with some heavy weights.

I made some salmon and trendy smashed potatoes with vegan tzaziki sauce for dinner and the Teenager loved it. I fleshed out the writer’s proof for the erotica book. And went to bed feeling like I had been successful.

This morning I got up, discovered I had low blood pressure after I took my beta blocker (oops) and had a light breakfast– coffee with PB2 and cream, PowderVitamin Electrolyte Powder Plus in strawberry cucumber and these breakfast biscuits from Olyra. I thought they’d resemble a Reese’s peanut butter cup or a Tastykake Kandykake.

They were hard, dry and the peanut butter cream was minuscule and didn’t even moisten the cookie. Terrible. And I love their yogurt breakfast biscuits so how could this taste like someone managed to shape chocolate-flavored protein powder into a cookie?

Anyway, the moral of the story is: sometimes what you can achieve one day is much less than what you achieved on a different day.

Reflections on a Range Rover Runner

I drove to work this morning and got behind a black Range Rover covered with bumper stickers “13.1” and “26.2” and “Run.”

And I looked at the car and I thought, how white collar and/or affluent do you have to be to drive a Range Rover and run that far for a hobby? Now, if it is your hobby, I don’t mean any ill will. More power to you! Enjoy it! I applaud you!

But I think of my dad who spent much of my youth as a diesel mechanic, or I consider my mother-in-law growing up on a farm.

People aren’t meant to be sedentary and then run for a hobby. And the idea that people work in offices or as professionals is a modern construct, before that our lives were physical. We hunted, fished, farmed, foraged. Humanity as a species did not always have a WalMart. They had to make things, not buy them.

We hear all these talk about circadian rhythms, blue light, organic produce and carcinogens where in the past our ancestors worked in coal mines with canaries as the only safety equipment.

So when I get home from work after folding clothes in the Stitch Fix warehouse, my Apple Watch thinks I’ve walked 15,000 steps because that’s how much my arms move in a shift. I’m getting up before sunrise, going to the time clock and standing at a table for eight hours a day.

When I get home, it’s hard to drag myself to the gym. But I do it, because my body requires it. But run 26.2 miles? Never going to happen.

I don’t have the energy, the physical prowess or the financial resources to have that kind of free time.

Return to the gym and other small successes after a week where cerebral palsy gave me hell

It’s a quiet Saturday morning despite absolutely roaring winds and nasty cold outside. The Teenager and I were working out some financial details last night over tequila shooters after upheaval this week (and plans to do taxes tomorrow) in light of the fact that her check engine light popped on last night. Her car has turned out to be an enormous money pit.

I’m drinking Friendly’s Arabica Mint Chocolate Chip Ice Cream flavored coffee. I adore mint in coffee, so I picked this up. It has a light and smooth flavor, so I drink it way too fast (as I am used to my bitter dark roasts) and makes the kitchen smell fantastic, especially considering it comes out of a K-cup. Both the mint flavors I have found since stumbling on the Dunkin white chocolate peppermint, have been branded Friendly’s.

The importance of exercise when you have a disability

Last night I returned to the gym, having warned my fitness and strength coach Andrew of Apex Training that he needed to leave the sadist in him at home because my body is still delicate.

(I know he’s a personal trainer, but that doesn’t seem enough to classify what he does, so I call him my coach. Life coaching has become so en vogue right now and that sort of coaching using combines listening, some psychological training and helping people get their metaphorical shit together. Personal training to me seems very goal oriented, whereas Andrew has to deal with a lot more than that. Training implies, in my mind, sharing knowledge of an activity that relates to form and tricks of the trade. It’s giving intellectual knowledge in combination with experience to help someone develop a skill, or in this case, a habit. But, having dabbled with hobby bodybuilding in the past, I have the knowledge and we’re working with non-textbook medical issues because I don’t have a “normal” body, so I need some extra support. And I love the guys at Apex for all the support they give to me.)

Andrew prepared a lovely full-body workout circuit for me that focuses on quality of movements versus high intensity or heavy weights. He and I have noticed during our now year-long relationship that the second set of an exercise is always better than the first set. And we’ve come to believe that my body– because my brain and the muscles in my lower body can’t communicate like they do in people without neurological conditions– needs to be reminded what to do. It feels like my body needs to be shown basic movements after even the most basic hiatus to break a cycle of malfunctioning, reset, and proceed in a different and better manner.

That circuit reminded my body parts how to work together again and get all those tissues and electrical connections firing. And after a week of sometimes intense pain, emotional and physical stress, and constant discomfort, the exercises allowed me to test my movement and release any sensations of immobility or fear I was clinging to. And Andrew was there to monitor my performance and make sure I didn’t hurt myself.

And let me just add, in case anyone else struggling with a disability like mine that manifests differently in people or that the medical establishment doesn’t fully understand: It is 100% true that you know your body best, but it’s also true that our experiences in bodies that do not do what standard bodies do often blind us to what we can and cannot do. This can bubble to the surface in many ways: 1. We are stubborn and should not do many of the things we attempt to do; 2. We give up too easily; and 3. Because we never see our bodies from an outsider’s perspective so we have a skewed outlook.

These are all important reasons why I have a personal trainer. All of them. I learned this from listening to my daughter talk about my body. She didn’t mention it as a young child, but as she got older she said things like, “Mom, your feet are fucky. Fix them.” She saw me fall so many times that she began to notice the signs of when I might fall. I don’t see that. I don’t see my feet from an outside perspective. And that’s why it’s emotional painful to see photographs of myself with twisted knees. And also why I asked Joan to photograph them for Not an Able-Bodied White Man with Money. And if I’m honest, why I put the photo spread in the back of the book. (See below for Amazon purchasing details or buy from us here.)

In many ways, Andrew knows my physical limitations better than I do. THAT is why I have a personal trainer. If it weren’t for him, I wouldn’t have exercised at all last night. And this is why I get angry when people cite a disability for why they can’t work out– that is specifically why you need to work out. You can’t pound weights like a powerlifter or run marathons, but bodies need to be used and challenged.

Mundane things like food and mail order packages

Rant over… My blood pressure is elevated this morning, but looking at the patterns of the last week and my list of dietary choices, I can see the role salt has had in my numbers. Dinner Thursday night had more salt than I’ve had recently, and dinner last night consisted of a canned black bean, sheep cheese and processed mole sauce lasagne with lentil noodles, laced with that sodium.

screenshot from Goodreads

Add the tequila, of which I did not have much, and the fact that I was licking salt off my hand…

I woke to a truly distressing dream that started as one of those dreams where you need to use the bathroom but can’t find one. I was wrestling a woman in a cheetah print denim dress to beat her to the toilet, and then, in the dream, I could not pee. Despite the pain and urgency of needing to pee. I suppose my mind really wanted me to wake up, because the next part of the dream haunts me even now. I saw a baby, who appeared to be blind (remarkably similar to the early 1980s hardcover, purple dust jacket edition of John Saul’s Comes the Blind Fury. And the baby had a baby. They were side by side, a newborn and a larger infant. Which took a cheese grater to my emotions, because I don’t think they were Irish twins. I had no choice but to get up after that horrific scene.

To bring things back around to happier things… and more references to Parisian Phoenix Publishing… (Please buy books!!!)

I prepared a special mail order package with a signed copy of The Death of Big Butch. I will be headed to the post office today.

What I ate Friday:

  • 4:30 a.m., one cup Friendly’s Peppermint Stick coffee, with half and half
  • 5 a.m., first breakfast, honey nut Chex with Silk protein cashew-almond non-dairy milk
  • 8:30 a.m., second breakfast, salted and roasted pistachios, mango jerky from Solely
  • 11:30 a.m., lunch, vegan tofu spring rolls and cabbage, diet Pepsi
  • 3 p.m., snack, iced coffee with half and half and cinnamon a very berry oatmeal cookie from Panera
  • 7 p.m., dinner, black bean and sheep cheese lasagne with cheddar and mole sauce on green lentil noodles and plantain chips
  • 8 p.m., tequila shooter with pink Himalayan sea salt and a slice of lemon

(and about 60 ounces of water)

Small goals for a rainy day

I don’t have the energy and the endurance that I once did. I can no longer drive myself to clean the house in a frenzy or bake all my bread from scratch.

I’ve gotten older.

My… constitution?… does not maintain consistency. Whereas it used to be my moods that swung, now my body’s functionality waxes and wanes.

So far today I have:

  • Folded laundry, and done another load
  • Did the hand wash dishes
  • Cleaned most of the stuff off the corner table
  • Had a glass of water, and a glass of iced tea
  • Cleaned the cat boxes in my room
  • Fed the bird
  • Vacuumed
  • And made amazing vegan flautas with Hungryroot cashew cheddar

I started Five Days at Memorial on Apple TV while I hung out with the dog.

And made great strides cuddling foster Jennifer Grey.

FURR Foster Jennifer Grey

With my walking being so unstable, I’m extra proud to announce that Friday night I squatted 135 lbs.

I started taking the Baclofen my neurologist prescribed and we’ll see if that makes walking easier.

And I’ve been sleeping 9-10 hours a night over the last few days so hopefully that also means my body is getting some recovery time.

Last but not least, I’ve been trying really hard to reduce sugars, refined carbohydrates and processed foods from my diet to test if that will lower the amount of inflammation in my body.

When success means you think someone is trying to kill you

During one of my recent doctor visits, I think it was at the end of August, my physician asked how my strength/fitness personal training sessions were going.

I told him my coach Andrew at Apex Training put me through some demanding stuff so I was in agony pretty often.

My doctor laughed and said that if Andrew was doing his job well I should hate him.

Well, today was the closest I ever came to thinking he might kill me.

Now, if you are new here, please note I have diplegic cerebral palsy (which basically means that my brain and my lower body muscles don’t communicate well, which has led to some structural issues in my hips, legs, etc.

I work out three-times-a-week: Monday, Wednesday and Friday. Andrew has his full-time job, which is primarily an overnight shift, and I work at a warehouse Sunday through Wednesday, 10-hour-shifts.

Mondays are always interesting. I am 50% through my workweek and Andrew is usually sleep-deprived.

By some miracle, I work 6:30 am to 5 pm and head straight to the gym, and Andrew comes to the gym, often having not slept for almost 24 hours. But he shows up and so do I.

Tonight was a full body workout that felt twice as intense as my normal routine, but it felt amazing to push myself and even more amazing to succeed.

And because Andrew knows what I’m feeling — not only as a person working to better myself physically but also as someone still grieving the loss of her father— he forgave me for eating half a cake for my dad’s birthday.

But I also asked him if some people had stopped working out three times a week. He say yes, that several of his clients were sporadic. One changed work schedules and hadn’t committed to a new time. And two of us were regulars.

I get life being in the way. I know it’s hard. I know it’s expensive.

But I encourage you to stick to it.

I started at Apex in August 2021. Somehow despite a tight budget, I find the money.

And for all those people who can’t stick with it— I promise:

  • You will see mental and physical changes in yourself.
  • You will feel better.
  • Your body composition will change.
  • Your fortitude will grow.

And you should also see changes in your balance, stability and coordination. The things you can do, whether stamina on a long walk or moving furniture, will improve. Your confidence should increase.

And some days it will feel grueling. Some days you will be exhausted or achy and not want to do it. On those days, tell your trainer how you feel, but show up for the workout and do your best.

It feels like a new level of training

Andrew, my strength and fitness coach at Apex Training, has reached new levels of sadism.

I said that (partially) in jest because I love to see his face get that pensive squint when he’s digesting my regular updates of how my body feels and what my other professionals report about its function.

I feel like since my finger recovered from my burst tendon, I’ve reached new heights in stamina and my own strength. Last week, I hit a PR (personal record) with a 35-lb dumbbell row.

And things just feel like they are moving better. I’ve stumbled more than usual, but caught my balance 90 % of the time. I have less pain and I think I understand the pain better.

I’m working out three times a week and doing movements, with support Andrew has designed, like split leg squats that are torture (in a good way) and that I never thought I could do. I even work out after my ten-hour shifts at the Stitch Fix Bizzy Hizzy warehouse.

It’s hard, and exhausting, but I really think it helps get blood flow into all my aching parts and aids my sleep and ultimate recovery.

And today Andrew let me beat the big tire with a mace.

Speaking of Stitch Fix, the company has opted to move the Sunday to Wednesday 10-hour cohort. We get to choose which of the remaining shifts we want to transfer to and I’ll be putting in for the remaining 10-hour cohort, Wednesday to Saturday.

Frankly, the idea of working 5 days a week is horrifying. And I’m not thrilled with the prospect of losing my current shift.

But a warm gluten-free brownie sundae with Ben & Jerry’s cannoli ice cream softened the blow.

PS —

I put my underwear on backwards today. All day I kept wondering why my underpants felt so uncomfortable.

The Concept of That Thing, Compliments from the Chiropractor and Ingenuity in Training

Sometimes, these entries feel repetitive. I hope they don’t feel like that to you, the reader. But, in many ways, life is certainly repetitive.

Whether it be the old house always needs attention, the dog is always sick, a struggle with weight, mental or physical illness, a bad boss or money problems, each of us seems to have that troubling thing with which we grapple.

If you don’t have that thing, I would love to read your memoir (or maybe not— I might throw it across the room).

So if you keep stopping by or my blog posts keep popping up somewhere in your life, I know I’ve been talking about cerebral palsy a lot. It’s that thing for me, especially right now, as I topple through the second half of my forties.

I have spend most of my life— until the last decade really— denying that that thing made my life difficult. I laughed off accidents, tried to hide my legs, carefully picked my shoes and didn’t talk about it.

But also, and very important in the chronology, until that point, it hadn’t really been an issue. I occasionally feel down, scraped some knees and hands and laughed about it.

But then I started breaking bones, having issues with my spine and hip, and when I fall now, it’s more serious that wash up some scraped flesh and laugh it off.

So, if you don’t already realize, these blog posts are meant to be informative for those seeking situations involving demiplegic spastic cerebral palsy, but also chronicle my acceptance and journey into how to live my life with my disability instead of pretending it doesn’t exist.

We’re learning to co-exist, cerebral palsy and I, in a way that allows me to stay active, be whole, and keep myself safe.

On Monday, I had an uncharacteristic fall at work that seemed to come randomly out of nowhere. I wrote about it here. It scared me because it didn’t feel like my other falls.

I left work at 11 a.m. and came home to rest and write and emotionally decompress. I was scheduled to go to the gym at 6 p.m.

I texted Andrew, my strength and fitness coach at Apex Training. He moved my session to earlier in the day and The Teenager and F. Bean Barker accompanied me to the gym to study my walking and confer with Andrew about the possibility of a work out.

F. Bean Barker, hard at work

We scarcely made it two blocks and The Teen says, “Holy Shit, Mom. You’re right knee is hitting your left leg. You can’t feel that?”

She proceeds to mimic my gait. After half a block, she looks back at me and says, “No wonder your body hurts so much all the time, my hip is killing me already.”

It might seem mocking for her to imitate me on a city street, but for me it’s helpful since I can’t see myself move. That’s why I also like her accompanying me to various assessments as she has no problem telling doctors, “She’s having a good day today. When she’s tired that leg is much fuckier.”

She and Andrew studied me and they stared in bewilderment. They agreed that my left hip was definitely out-of-whack. The Teen left and Andrew got me stretching and doing a thorough workout that safely challenged the muscles that seemed to be malfunctioning.

As happened on Monday when I was achy, the workout made me feel better (which is why I didn’t want to cancel). I have never been good at not overdoing it, so the concept of “being gentle with myself” as my therapist says and “taking it easy” (both emotionally and physically) as my dad would remind me if he were still here, does not come easily to me. It’s especially hard because spasticity means my muscles don’t relax, so motion and exercise really can relieve my symptoms. But if my issues are joint and/or fatigue related exercise can make it worse. And I don’t often know which course of action will help.

I proposed this theory to Andrew: Since cerebral palsy means the brain and the nervous system can’t always communicate, I feel like sometimes those messages goes haywire. That’s when a good, supervised workout (where Andrew can guide my motions and direct me as to what body parts are doing unnatural things) helps my brain re-learn those communication skills. The muscles start to do what they should do because I am thinking consciously about how to do it, which helps the muscles get into the groove, and from there muscle memory takes over, and through doing, the brain resets.

Just my theory.

I woke up Thursday morning with minimal discomfort from my fall (and a new lump and bruise where I walked into a weight bench at the gym, which made Andrew feel terrible). I was looking forward to my appointment with Nicole Jensen of Back in Line Chiropractic and Wellness Center on College Hill in Easton, Pa.

Her daughter had joined her in the office. That made it interesting to have a different kind of conversation about my condition. I was a good example of two things: every patient is different and some patients have self-awareness about their body. And according to Nicole, I am one of the most self-aware in the practice. I was also an unusual example of someone who often “does better” in heels because of the fact that my heel parts (tendons? ligaments?) are so tight. I’m a toe-walker. My heels natural fall at an angle so a slight “kitten” heel replicates the shape of my feet.

I told Nicole about the latest “random” fall and this worried her, because she’s noticed (and I have tracked on a calendar) that my falls have gone from every six weeks to every two weeks. I mentioned that I applied for a mobility service dog through Susquehanna Service Dogs. She loved this. She agrees that I am the perfect candidate for this and that a dog could be a game changer.

I explained that I had mailed the application last week (Friday to be exact) and that The Teenager and Little Dog’s Mom had said they would write my letters of support (which means they support the placement of the dog with me and will take responsibility for making sure I take proper care of the dog once it is in my home). The Teenager planted the idea of a service dog in my head and it took some time, research and more falls to help me accept the idea that I have a disability and that a dog would be able not only to help, but would probably improve (and protect) my quality of life. The Teenager works for a local pet care company.

Little Dog’s Mom has known me for 20 years, trusts me to care for Her Ladyship Sobaka, and is a very responsible dog owner who takes often thrice-daily walks and has a magnificent fenced back yard. A potential service dog would have my small yard for potty breaks and the opportunity to run and play across the street at Little Dog’s house.

My doctor’s office assured me that if I bring the medical assessment form with me to my August 19 check-in, that my primary care physician would not only fill out the form but he would also do it while I was there. I asked my estranged husband of twenty years (and The Teen’s father), the president of the cat rescue where I foster (who left the social work business after decades to open Apricity Pet Care), and my therapist (who has known me for a decade and whose wife is a physical therapist) to fill out the personal reference forms. They all agreed. But back to the chiropractor…

Nicole also said to stand on one foot throughout the day to stabilize my leg muscles. Physical therapy is a fascinating science, the simplest movements can impose the greatest change. My blind friend Nancy discovered that a good portion of her shoulder pain and finger numbness stemmed from not stretching her neck up. As a blind person, she never has a need to turn her head toward the sky or ceiling or someone speaking from the stairs or seeking something on the top shelf by looking for it.

When her very clever physical therapist suggested stretching her neck regularly, her symptoms decreased significantly.

There it is. A lot of words. A lot of thoughts. I’m hoping this post will give you food for thought, reassure you that I am not totally a disaster waiting to happen and/or offer you information on my journey and hope for you if you need it.