It’s probably the hottest day of the summer and I did some work for Nan and went to visit my friend Maryann to help her with some odds and ends around the house.
It’s been a crazy week for both the teenager and I so I thought it would be fun to post some of our recent summer meals.
The teenager made homemade gourmet fries with garlic parmesan sauce. We also had burgers.Egg on toast with sriracha MayoTurkey Caesar wraps with cucumber, spinach, romaine and tomato for my lunch at workBruschetta chicken burgers with spinach in wraps Fish sandwiches with homemade tartar and broccoli bean friesSpam sandwiches with pickle, Doritos and farm fresh cornThe Caesar wrap at work Vegetarian potstickers in the air fryer with shaved Brussel sprouts Takeout Wednesday: General Tao’s TofuWe had chicken with vodka sauce and spaghetti. I put some leftover chicken on a sprouted everything bagel with Italian cheesesLeftover tofu with a variation of my green beans Caesar and Triple Jade from the Chinese restaurant
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.
It’s Wednesday. That’s my Friday. Wednesday is typically both hectic and easy at the Stitch Fix Bizzy Hizzy (Pennsylvania warehouse).
I’ve been performing at 100% all week— probably 106% yesterday— and my body has been protesting. A lot of dull pain and stiffness. I was honest with Andrew, my fitness and strength coach at Apex Training, that I have been struggling with my leg and spine.
So, Monday night, coincidentally the only day I worked a full-hour shift this week, I went to the gym but only focused on upper body. And I felt so much better and woke up as close to I get to ready to take over the world.
And yesterday, Tuesday, I excelled at work and came home stiff but still had an enjoyable evening. I thought it might be a good idea to take one of my muscle relaxers. It’s not a strong dose, but I hoped that they would ease the stiffness and allow by body to recover.
I woke up dragging, but managed to pull myself together. I had a cup of coffee and did what I could around the house. Put on my new cat leggings from Purr Haus. More about that here. (And I believe women of a certain age should not wear graphic prints on their bums and I am in that category. I have ventured outside my comfort zone.) Grabbed my lunch out of the fridge and left for work.
Went into the building, said hello to my friends and colleagues in the main break room. Walked down the central aisle with my big yellow purse and in the middle of the room, with open space everywhere and with no one and nothing near me, I face-planted onto the hard, austere floor.
On of my Monday through Friday colleagues came to help me up. I stood tall. Went to the cubby holes where we store our stuff and put my purse down. I took my water bottle and went to the bathroom and the water filling station.
I had just lived that scene in every underdog teen movie or television show. You know the one— where the dork gets tripped by the cool kid and throws their lunch tray across the room.
In the bathroom, I noticed that I ripped my brand new pants. I had scraped my knee but no bleeding.
I went back to the break room and couldn’t stop myself from crying. One of my colleagues, part of “the Sunday cohort” with me, gave me a light hug while I collected myself, assured me the pants could be repaired, and made me laugh.
When I got to my table for the day, I noticed that not only did my thumb hurt, but I had a tiny bruise under my fingernail.
I went to my supervisor and asked if I could leave at 11 instead of 3. The whole incident has me upset.
The falling is easy. Hell, getting up and doing what you have to is easy. But the fear is getting to me. The fear of when the next fall will come, how it will happen and what will happen to me clouds my brain.
I had the great opportunity to have a FaceTime chat with the kind and personable Tylia Flores yesterday. In embracing the voice of the younger generations, I am learning about myself. Read more at Parisian Phoenix….
If any of you read my personal blog on my website, angelackerman.com, you may know of my quest over the last two years to learn more about cerebral …
So today I read more of Tylia Flores’ cerebral palsy memoirs, helped an aspiring writer, went to the gym and took a nap.
Sunday I return to work.
Speaking of which, today I received an amazing hand-drawn card from one of my up-and-coming Parisian Phoenix authors to celebrate my time off. Joan says this shows he’ll fit right in.
In the evening, the teen and I popped down to Emmaus, the first of what I hope will be several upcoming visits. I did to get to Let’s Play Books and some of the other Emmaus shops.
But tonight we were headed to Purr Haus, a cat-themed boutique that works with local cat rescues (owned by a former local newspaper reporter). It was finally the night of the FURR fundraiser— 20% of item sales and 100% of basket raffle sales went to Feline Urban Rescue and Rehab.
The teen bought some stuff. Then I bought a lot of stuff. Including this mug.
Because I so need this in my life. And I was an idiot and got two of my three t-shirts one size too small. I keep forgetting I gained weight and grew boobs during the pandemic.
I’ll blame that on the glass of red wine they served me at Purr Haus.
I also asked the owner to contribute to our anthology, As the FURR Flies. She said yes. I hope to tie up most of the project for the graphic designer this week.
The teen took me for espresso milkshakes and chicken salad sandwiches at Vargtimmen King Koffee.
Fun place.
The sunset was gorgeous and I saw some 50s-era cars in a driveway. And I think the teen enjoyed driving my Jetta turbo on the highway.
And then I came home and tried on my cat wardrobe— and realized my error in two of my t-shirts.
Medium Oops—smallOops—smallCat leggings Cat lounge pants with pockets
Last year, for my birthday, I bought myself a subscription to Silk & Sonder planners, which are also self care journals of sorts. I loved it, and felt pressured by it, and felt much of the effort and information going into the planner was time and writing that should be invested in my journal.
So, at $20 per month, I decided the expense wasn’t as great as the reward and with my cancellation I encouraged the company to design a yearly binder and send pages for that binder to make the product sturdier and more useful for long-term planning.
For the start of 2022, I ordered myself and the teenager planners. She preferred mine, ended up with them both, and in the end decided she wanted an iPad. So, I gave her my iPad Pro.
This time, as I decided I really could benefit from a paper planner— something about old fashioned paper makes it easier for me not to overextend myself. Dots and colors on my iPhone or Google calendar just don’t have the same weight.
I ordered a prepaid three month subscription— reducing the cost to about $16 per month. Still ridiculously high for a paperback planner.
I started this entry when I filmed the unboxing video, but am continuing it on August 1. The first official day of my new monthly planner.
I started my day by leaving the house at 7:15 a.m. to visit my friends the phlebotomists at Quest Diagnostics. With my history of anemia and fluctuating iron & vitamin D levels, I tend to get iron & vitamin D checks with my annual bloodwork.
My vitamin D was low during my January 2021 physical (22) so I started adding vitamin D + calcium supplements to my diet. With my multi & my slow release iron.
By June, that had jumped to 32. I stayed that level for the next six months. Today’s test would see if I had gained more— 30 is considered normal.
I started laundry before I left so I could wear my new cat t-shirt. I had a much anticipated meeting with social activist-journalist Dawn Heinbach scheduled for the afternoon at Cracker Barrel, a location I thought would be convenient as she lives several counties away. She submitted some material for the Not an Able-Bodied White Man with Money anthology. I had some books she wanted. I know she’s a cat person so I knew she would love my French pun cat shirt.
When I got home from Quest, I made an egg sandwich and took a photo to my artist friend Maryann whose mixed media postcards appeared in Not an Able-Bodied White Man with Money. She thinks all my food photographs are well-played and pleasingly styled. I told her she’ll have to come for dinner.
I put the laundry in the dryer and eventually changed into my cat shirt. I did some paperwork before I picked up my good friend Nancy to provide a ride to the doctor. Nancy is my poetry editor at Parisian Phoenix Publishing and she’s blind. She keeps me in line both with my writing and my business and occasionally has to make sure I’m facing my disability in an intelligent fashion.
While at the doctor’s office a very senior citizen’s phone went off. The ring tone was the opening notes of Usher’s “Yeah.” I had to bite my tongue to keep from laughing. He looked mortified. Did a grandchild prank him?
I finished Tylia Flores’ Handi-Capable while in the waiting room. I posted a review on Amazon.
We did a couple other Nancy errands and I pointed out I needed gas in the car, and asked if she’d mind a detour to Wawa. I think Nan made out on that one as she went home sign a turkey sandwich, some sour cream and onion potato chips and some half-and-half iced tea/lemonade.
Somehow the two of us can do absolutely nothing but laugh while doing it.
I spent the afternoon blogging and catching up on some work for the business before it was time to go to Fogelsville for my early dinner.
The sky opened, as they say.
I told Dawn I would hang out in those amazing Cracker Barrel rocking chairs. I didn’t know it would be in a deluge.
Luckily I had my umbrella in my car.
The servers came out and danced in the rain. An old man complimented my Eiffel Tower umbrella and said he and his wife were going there next.
Ever the grammar nerd, I said, “really? From Cracker Barrel right to Paris? I hope you love it.”
Dawn and I had a superb conversation about what journalism should be, and she lives in the geographic region served by my protege at Berks-Mont newspapers. We talked cats— and she did like the cat shirt. And my turkey dinner was disappointing but Dawn and I chatted for two hours. We shared a cup of coffee after dinner before going our separate ways.
I bought the teen a Scooby Doo mug and myself a coconut peanut butter candy that tasted like toffee both in flavor and mouth feel.
On the way home, my 2015 jetta played a horrible prank on me. The gas gauge and miles per gallon/miles until empty screens didn’t display any information. Luckily I got gas with Nan so I knew I had plenty. On the highway. 26 miles away from home.
Upon reaching home, I took care of some correspondence and received an update from my doctor. My vitamin D is now 37!
Tuesday already. If I had not taken voluntarily time off this week, I would be three-quarters of the way through my work week and asleep in preparation of my last day before the weekend.
Instead I slept until a leisurely 6 a.m., did some kitchen cleaning and some laundry while I waited for my coffee to brew.
I did some work on my own essay for the As the FURR Flies cat fundraising anthology — “The Unfortunate Cat Bite Hospital Vacation.”
Spoke with the teenager and headed to visit Gayle, the Parisian Phoenix Art Director, and my longstanding (and upstanding) friend. First I had to remove a tire toy the dog inserted into my purse. We had plans to scan the ink cartoon our friend Rachel had done for the anthology.
Then we went for a walk. I told Gayle not a long walk as my right hip just didn’t feel right and I felt like I had to march to avoid tripping myself. That I had not only fallen on Sunday night, but out of the damn bathtub while taking a shower yesterday.
I bought her a beverage at Déjà Brew, an eclectic local coffee shop/cafe, and nearly fell on my face because the damn floor has a massive bubble down the whole thing. I can’t even describe how huge and high this ridge was. I felt like someone had parked a tree under the tables.
Lunch was pita with hummus and harissa. Then the teenager went to visit a housebound senior to try and help her clean up a bit.
When we finished, I took the teenager to the auto parts store where the Amazon driver left her new Apple Pencil, bought us both discount Diet Cokes at McDonalds and then we headed to a place she’s wanted to visit for a long time— Exotic Dreams and Lingerie— and their neighbor. We bought some anatomically styled sour patch candies and let’s just say our dress form Esther might be donning some knotted red ropes in the future.
The teenager went to work and I finished my story for the cat book and attended a library meeting. Then the teen made a magnificent hamburger dinner with homemade garlic parmesan gourmet fries.
And we attended a foster meeting via Facebook.
To end the night, the teenager broke an ancient ceramic bowl and I dropped a mason jar very painfully on my toe wrestling with the dog gate.
“You better put in that application for a service dog.”
We hadn’t even made it half-way down our block and I already stumbled and fell. The teenager, her dog, and I had left our house at 7 p.m. on just another high-90s day. We were headed to CVS for ice cream.
The CVS is a 2,000 step walk— there and back— so we thought it would be good exercise for the whole family.
Plus, I had about $3.75 in Extra Bucks and a 40% off coupon. A pint of ice cream is $6.99 at CVS so I grabbed a whole bunch of singles and a handful of change.
The dog behaved really well on the walk, but my left foot did not— it kept twisting under me. I felt like I had to lift up my feet in exaggerated steps not to fall. Like high knees marching.
I stumbled twice on the way home but did not fall again.
The teenager made her remark about the service dog. I’ve spent a lot of time with her dog this weekend and thought… just imagine if this dog were useful.
I already did 90% of the 54-page application packet. I talked to those people I want to be my support letters (the teenager and my neighbor, as they would be my literal supports) and my references: the teenager’s father, cat foster godmother (who used to be a social worker) and my long-time therapist (whose wife is a physical therapist).
That leaves one thing: the medical evaluation. My own insecurities make it very difficult for me to ask for help. And it’s taken a long time for me to learn to speak up and out and advocate for myself.
I am nervous to ask my doctor— my family doctor of more than a decade— to do it. Part of me wants to wait until my appointment on August 19. But if he says no, that only leaves me two months to find someone else.
I think I need to call the office tomorrow and leave him a message to ask if he’d do it if I bring the paperwork August 19, or sooner if he wishes.
Again, I have doubts. What if I’m not disabled enough? I don’t want to waste anyone’s time. I don’t want to take a spot away from someone who needs a dog more than me.
But I’m struggling and I’m scared and I’m getting older. And I can do so much on my own but a dog would give me that much more.
I spent a lot of time on the application. Pretty much a whole day. What do you want the dog to do? What’s your typical day? Do you work? Do you volunteer? What are your interests and hobbies? Do you own a home? Do you have pets? Who lives with you? Do you drive? Can you handle travel? Can you take care of the dog? Are you able to train the dog?
If I can get ahold of the doctor’s office, as soon as I know someone will fill out the papers— I will tell my letter-writers and references to do their thing.
My therapist and I had a chat about it. His professional association discourages therapists from doing medical evaluations for service dog applications, but since I was asking for a reference, he was okay with that. He had no idea how many things a mobility dog could do.
He mentioned that in our current times, the emotional support animal and assistance dog phenomenon seems to be getting more and more prolific but that in my case, I’d obviously put a lot of thought into it, done my research, and found a program that could really benefit me.
Fingers crossed, I guess.
Oh, and the ice cream… it was $1.86 after my discounts. I had a $5 bill, five singles and 87 cents in my pocket. I paid exact change.