I signed up for NaNoWriMo 2022, in part because deadlines and challenges and what feels impossible sometimes motivates me. But between foster cats with diarrhea, work shift changes, health issues and mood in general, I’m losing my focus and drive. I need a reset and an evaluation of my goals more than I need a push.
I have learned in the last five years or so as I’ve “come out” of the disability “closet,” is that when you have a disability or a chronic condition you have a choice: you either withdraw from life or you become tenacious and stubborn and adaptive. I think the majority of those of us with congenital issues, especially when our parents didn’t make our physical difference the center of our existence, tend to be the latter to the point of ridiculousness. We want to do things, whatever they are, and we don’t want our bodies to hinder us.
I think people who came to body differences later in life might be more prone to accept “well I just won’t do that anymore” while younger people with catastrophic injuries have the will to keep on going, and those with issues since birth learn that if they want to experience certain things they have to work harder but in reality we need to work creatively. So the 20-year-old proclaimed paralyzed as the result of a sporting accident will be more motivated to walk again than the 60-year-old who had a car accident.
But these are really complex topics to ponder and very personalized to the emotional and financial resources a person has to support them.
If you read my personal blog, you know I have diplegic spastic cerebral palsy. If you get tired of hearing me day that, I don’t care. I’m 47-years-old and like many Generation Xers out there I’m wondering how the hell that has happened so quickly. But more importantly, and I write this without judgment, I had no real medical treatment between the ages of five and twenty.
I realized– because of my job working in the warehouse at Stitch Fix of all places– that not only do I know nothing about cerebral palsy, but my medical team might not know much either. So no wonder I have a lot of unanswered questions. This week I celebrate my two year anniversary with Stitch Fix and my journey to understand my own body will be forever tied with my warehouse job with them.
Up until December 2021, I had never seen a neurologist. Until that late December visit with a neurologist, I never even had a diagnosis on my file.
And to think, now I have TWO neurologists. I guess I just want to remind everyone, and this is why writing a cerebral palsy memoir will be one of my next projects, that we tend to view our doctors as people in a hierarchy above us and we approach them for answers and with hope of relief. Instead, we need to approach them as peers with education and insight and it’s our responsibility as patients to ferry information between them and do what we can for ourselves.
I had a fall Friday night, after a week long battle with nerve pain in my foot and leg. I agreed to cortisone shots in my foot to see if that would curb the pain in my foot (and it did) but the resulting change in sensation and muscle responsiveness has made this leg (which happens to be my good one) less reliable. Throw in lack of sleep, not enough food and a cocktail and down I went. As someone with cerebral palsy, I need to remember that normal side effects for people who have proper muscle control may manifest differently in me.
So, Saturday morning, I nestled under my new Dad blanket (if you need to hear more detail on any of this about Friday click here) and planned to work on my NaNoWriMo project. Even though I had the time, and the healthy start needed to get a flow going on the project, I didn’t write a word. And I’m wondering if, already having one novel underway and past deadline, if starting another is merely destroying any chance of focus I have.
I have 4,000 words on the NaNo project, which if you don’t know is National Novel Writing Month, and I should be at 12,000 words by now. I had hoped the new project, a new idea which is nothing like anything I’ve ever written, would shake off the bad habits of an editor/publisher debating every word and allow me to write freely. That impetus would revive my ability to write quickly and without overthinking.
And strengthen writing habits.
The jury is out.
I may abandon official NaNo in favor of sticking with a strict writing schedule of rising at 4 a.m. daily before my warehouse shift and writing from 4:15 to 5:15 a.m.
The Teenager has had two overnight clients and I think at last count it had been 16 days since she slept in her own bed. When she arrived home yesterday morning, she looked at me on the couch and her dog lazily dozing and decided we both needed fresh air. So she mentioned key words: “walk,” “ride” and “window.” The dog lost her mind.
The Teenager knows how to bribe both of us.
She recently bought a new harness and long line for the dog. So we went to a small park to try it out. The park outlaws tobacco, alcohol, fireworks, drugs and golf. But dogs are okay.
There’s a cute video on YouTube of F. Bean Barker enjoying the outdoors.
And then we went to “the Window.” Which in this case meant Dunkin as it was still early and we sampled their new Cookie Butter offerings, the cold brew and the doughnut. Both were dangerously decadent. The doughnut is 370 calories so I’m hoping it sells out to the extent where I can’t get my hands on it.
I went to the park and the window in my pajamas, because it was a gloomy Saturday and I didn’t see the point of fancying myself just to hang out with the dog.
I spent a good portion of the day doing dishes and laundry and watching “Wheeler Dealer Dream Car” on Motor Trend’s streaming channel. I subscribed to Motor Trend last month so I could binge watch the Dax Shepard redo of “Top Gear America” and I may hang on to the subscription as I enjoy the content. The Teenager finds this perplexing as she knows I have no mechanical aptitude.
She classifies my car knowledge as “it looks pretty” and “it goes fast,” but I suppose my interest is similar to my fascination with haute couture sewing. I have read my haute couture sewing guide cover to cover (and yes there is such a thing) and I can’t sew to save my life.
I suppose I am a true academic. Reading and obsessing over knowledge of things I will never have the skill to do.
Then, the Teenager found “her box” on the doorstep, her third fix from Stitch Fix!!!! So we opened that bad boy.
I think The Teenager is disappointed that her box doesn’t have more flare, but the staples she receives is really improving her day to day look. As a dog walker, I am now seeing her in these Stitch Fix selections as a way that she can maintain comfort and still look put together.
If you watch the YouTube review, you’ll see more of The Teenager in what she calls her new “math teacher sweater.” It’s a keeper. It’s about 16 hours after she received it and she’s still wearing it. Stay tuned to see if I steal her shoes and keep them.
Later in the day, I had an interview with David Figueroa of David’s Cerebral Palsy and Fitness Channel. I have explored his YouTube content and I listen to his podcast. I am working hard to take charge of my aging process and I hope my message of the importance of strength training and my approach to medical advocacy resonate with people.
We talked for an hour and a half. I’ve included a link to his YouTube channel below. Let’s hope the chaos of my house wasn’t too distracting! But one disruption I welcomed was the motorcycle that passed by while I was talking about my father.
I ended up sleeping more than nine hours last night, and woke up this morning covered in cats. I hope your time-change-hour served you as well as mine did. Here’s a photo of me with the fosters, and it’s blurry because I took it without my glasses.
I know I haven’t written in a while, in part because I felt redundant talking about my business endeavors at Parisian Phoenix. The Easton Book Festival was a lot of fun.
I took yesterday off, pretty much just for fun, and I ended up perusing the shows on Motor Trend’s streaming channel, heading to the gym and watching the neighborhood kids Trick-or-Treat.
When I got to Apex at 2 p.m. to meet up with my coach Andrew, he noticed my leg was twisting in. It had been, at that point, one week since my last chiropractor visit. I have my next visit tomorrow. I’m trying to stretch from every seven days to every ten.
So after a rugged leg day with Andrew, I went home and checked the measurements on my phone for my walking asymmetry. I haven’t had much recorded in the last few weeks.
But Andrew was right… The asymmetry measured 4%. I’m not sure what that means, but it does coincide with my legs malfunctioning.
I woke up with sore quads from leg day. And my whole work day was a struggle because my hip was out-of-whack and my legs felt heavy. And my middle toe on my right foot kept burning.
I finished the day at 85% and it was brutal. It’s difficult for me to straighten up. On the way hope, a pain filled my toes so badly it up my leg as my foot began to spasm. Felt like some sort of nerve pain.
The phone registered 9% asymmetry and I keep getting pains down my right leg that make it hard to stand.
I took off my sock and my toe closest to my big toe is red, maybe a pinch swollen, and very tender. The flesh almost felt like it might be developing a blister, but no indication that fluid is gathering and the red pattern seems to be jagged versus the round shape caused when something rubs. The dog did stomp on it yesterday with all her weight from a leap so maybe she damaged something inside.
I washed it well and soaked it in Epsom salt but no change.
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.
I put my underwear on backwards today. All day I kept wondering why my underpants felt so uncomfortable.
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.
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.
The wounds I acquired last Monday falling through the screen door (yes, there is a blog on that) have mostly healed, except where Bean Dog accidentally scratched off my scabs. The teenager tells everyone it looks like I had a fist-fight with a bear. And we had a family debate over Indian food– the teenager, her father and I, over whether I won or lost. Consensus was I won. (The Indian food came from Nawab in south Bethlehem, who were gracious hosts despite us not knowing that had converted to reservation only for dinner.)
On Saturday, I went to the gym and hit a new personal best with Andrew at Apex Training. I think it was 110 lbs on the barbell for three reps in box squats. My torso, my thighs, everything could take the weight well, except my knees. My knees kissed as I stood up with each rep. It didn’t hurt. It quivered a little, but I definitely had to plant my feet, balance the weight, lead with my thighs and hips and force those knees slowly out. The weight didn’t bother me. My own knees terrify me.
On Sunday, I performed 111% at the Stitch Fix Bizzy Hizzy, which means I shipped 555 items. Goal is 500 for a ten-hour shift, but as I reached higher numbers and saw that 555 was possible, I went for it. After all, both 111 and 555 are lovely numbers. Three prime numbers in a row, twice. Patterns and numbers comfort me. They offer a reminder that while a million permutations might exist, that there is underlying order in the world.
Yesterday I started my shift with refixes at the table in QC that has been assigned as mine for about three weeks. My table, line 4b, table 6, has a manual conveyor line on my left, which is great for my balance but bad for my finger. I hit 162, the daily minimum expectation, but barely.
I was achy, with sore feet and a sore spine, but nothing unusual for a person standing for 10 hours a day. I notice on my phone that around 4 p.m. that my walk was asymmetrical by 1%.
I have averaged six hours of sleep lately, with borrowed kittens and the high heat, so I opted to take a muscle relaxer and sleep versus push myself at the gym. My chiropractor has suggested my recent issues with falls and lack of control in my right leg might stem from overdoing it.
Between the heat wave, the full 10-hour shifts, the general aches and stiffness and the inappropriate levels of sleep, I opted to postpone the gym, take one of my muscle relaxers and sleep. I slept much better, but I could use a solid 8 hours or more.
I’m slowly learning just because I can push myself doesn’t mean I should.
I wept tonight. I nearly wept myself into a panic attack. My guts are still fluttering. And I flung things down the stairs.
But that’s the end of the story. Let’s start at the beginning.
On Monday night, after the teenager’s car accident, I went to Apex Training for my 100th session at the gym since I started about ten months ago.
Because it was my 100th session, the my trainer picked out 6 exercises for me to do 100 times, at my own pace, breaking them into sets as I saw fit.
I was a little stiff the next day, which was yesterday, but I still managed to do 100% according to the metrics at work. But my the end of the day my right leg was unsteady.
Today I woke up very stiff, with my muscles in my lower body so tight I struggled to bend and I had even less control and stability in my right leg.
I only made about 90% today.
By the end of the day, my right quad had this dull burn to it, but it didn’t really hurt. But it was getting more and more difficult to control as my stiffness dissipated.
But the teenager and I still made it to my 101st session at Apex and celebrated by trying the new strawberry Frosty at Wendy’s. Which, by the way, is much tastier with a Wendy’s sugar cookie.
I took my custom splint off— today marks one week of wearing it and taking it off every 3 hours for occupational therapy exercises and when needed “for hygiene.” And the finger is looking steady!
I removed the splint to wipe down my hand with a wet nap before eating. I set it down carefully in my lap. And then it just disappeared. I checked the take-out bag. I checked my bra, the car compartments, the seat.
The teenager told me to stop wiggling around that it had to be in the car and we’d look at home.
We didn’t find it at home.
So I went to the kitchen and started to cry. my finger had looked so good wrapped around that Frosty cup as I smeared the Frosty on my portion of the cookie the teenager and I shared.
I checked my local CVS’s website: no splint in stock. So I checked my local Walgreen’s: no splint in stock. And so it went.
Still upset, I found a piece of wood my cockatoo had stripped from her toy and taped it to my finger.
My splint. Hopefully I’ll find a better solution in the morning.
The world often seems twisted in an eternal loop of one step forward, two steps back. It makes me miss my dad.
But I noticed today amid the cat drama and everyday life— I worked with my blind friend Nan this morning— that I still have trouble with my right leg, mostly stiffness and lack of control, but no pain.
So when I headed to Apex Training for my session with Andrew, I felt anxious and emotionally exhausted but physically ready to go.
Every session Andrew challenges me more today— and I did a mixed grip barbell deadlift at 100 lbs. And for the first time, I felt like I nailed the form.
As if that weren’t enough, he had me do something I never heard of: a plank up. He wanted me to do 5, but I only did 4 1/2. Well, Greg was willing to give me credit for 4 3/4. And as the teenager says, Greg doesn’t hand out credit easily. Speaking of improvements, in Saturday’s session, I surpassed 60 seconds in a plank.
My strength, at least the physical kind, is coming back.
Dinner was a flat bread pizza — a vegetarian delight of random cheese I found in the fridge, a radish sliced thinly, and some honey with red pepper flakes.
So first things first— let’s embarrass the teenager.
She graduated from high school Friday night. (Above, pictured, left to right: me, her father, her, her paternal grandfather and grandmother and my stepmom)
The weekend that followed included several dinners with family members and we have a party planned later this week.
The other updates:
I have been killing it in the gym. My plank time is more than a minute now. My strength is improving and for the first time ever, I did exercises with a 30-lb dumbbell.
It’s been seven weeks since I got my first cast to treat my mallet finger. Two more weeks until it comes off. Remember that when I mention that I am hitting milestones like the one mentioned above.
I hit the goal for Freestyle on Sunday at work in the Bizzy Hizzy. I shipped 500 items in, if I remember correctly, 363 packages. What makes that amazing is that we also had a one-hour training — so 500 items is the goal for a full day. Taking the training into account, that puts me at 110% for that day.
Yesterday and today I worked at the same left side table in QC. Even with pushing boxes to the left with a bum finger, I did 166 fixes yesterday (102%) and 169 today. (104%).
But here’s the weird part— i was in pain but it didn’t impact my movement. I started each day extremely stiff and with a little bit of back pain, but not in the low or upper back, in between. And as I eased into my shift, my hip hurt deep in the socket, up near my groin, but in the front in a very small but specific spot. And my quad would feel intense pain that sometimes went into my knee but for the most part didn’t. Tylenol doesn’t help. It gradually subsided over two hours. It happened in exactly the same way today.
I combat this my paying extra close attention to all my movements. I plant my feet on the floor and hold my core and glutes tight. I force out my toes and my knees and as I move my body to retrieve clothes below my waist I bend with my hips and stretch them. Is this what helps? Is something out of whack (like my femur) and stiff by morning and I force it back into position?
In very sad news, Charles Ticho, the nonagenarian author who penned the Parisian Phoenix book Stops Along the Way died today. I will be addressing this soon on the Parisian Phoenix blog.