It’s just about to turn 5 a.m. on Tuesday morning. The last 48 hours have been emotionally difficult, and those are internal challenges I have resolved within myself but now I need to “make right” in the world.
My good friend Joan (the talented photographer) had quipped that the moon is in “Frustrato” phase and perhaps that is accurate.
Sometimes it’s nice to blame the universe instead of accepting our part in the mayhem. Because even good intentions spark fires.
I heard a podcast yesterday; I believe it was an economic one, that asked if one host was “a glass half empty or a glass half full kind of guy.” He replied, “it’s just half.”
That’s too much enigma and philosophy for pre-dawn hours. Blame the fact that my trusty espresso machine only filled half my mug.
Mug from Purr Haus in Emmaus
The teenager and I had 14 kittens in the house Saturday, Sunday and Monday offering temporary lodging for these babies whose official Feline Urban Rescue and Rehab foster families have gone on summer vacation.
They were so much fun to have around, but 11 went home last night. This led the Teenager’s officially adopted foster fail Mars of the Roman Pride distraught that his friends had gone. He screamed until the Teenager released him into “gen pop” where he plopped himself down in front of the remaining visitors.
On Friday, I had a rather grueling session at Apex Training with my coach Andrew. We did some intense work on balance and single leg muscle stability. On Saturday, the communication between my brain and my lower body felt rickety (for lack of a better description) and it was challenging to move. By Sunday, the movement felt smoother but my phone was registering spikes in walking asymmetry. But something very interesting happened Monday— I could not only stand on one leg, but I could also hold my leg in a few seconds of a quad stretch.
Yesterday, I visited the Stitch Fix employee store, which resulted in a good news/bad news scenario. I bought myself jewelry on an impulse and discovered my second holes could still accept earrings. As someone who really grew up in the 80s and graduated high schools in the 1990s, I have three sets of holes in my ears.
I bought the Teenager some new things, including some warm hiking style boots for fall and her dog walks. I bought myself an adorable pair of shorts, and I picked one size up from my pre-existing Stitch Fix clothes and they were too small.
Obviously my efforts to reduce my recent (as in pandemic era) weight gain have been not sincere enough. Sigh. I’m trying to eat better and move more without falling into a strict/restrictive mindset.
But I did eat an entire medium pizza from Domino’s the other night. It was a medium hand-tossed crust, light on the cheese, light on the garlic Alfredo sauce with red peppers and pineapple.
On the way home from work last night, I noticed that the furniture store looked abandoned— and that the sign merely said urn.
In the background of all of this, the ‘cat book’ from Parisian Phoenix has hit some unexpected difficulties prompting a delay in its production. But my quick thinking, after a few hours of pondering, have inspired an interim release of a mini cat book featuring advice and stories about the care of cats. The larger book will come later, perhaps in early 2023.
In the meantime, I am very puzzled why my sweet tripod foster Louise has decided to crate herself.
And the most surprising item of the day was receiving my first catalog for Parisian Phoenix Publishing— Uline junk mail!
I suppose the last update is that the people at Susquehanna Service Dogs have cashed my check for the application fee. I’m anxiously awaiting contact.
To say life has been hectic feels like an understatement.
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 …
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.
A while ago, the teenager suggested that I needed a mobility dog and someday she would train me one.
Well, with all the mishaps and falls I’ve had since April (mallet finger, smashing into a brick wall, almost breaking my glasses falling literally on my face, falling into the bathtub and whacking my head on the ceramic tile wall and my personal favorite falling through the screen door), I did some research and thought the beautiful, dog-loving teenager might be right.
I had previously blogged about why I thought a dog would help me and I also thought a first dog should come trained and the teen, approaching young adult, could learn from this one. Just like I would.
I requested an application from two organizations. The closest to me was Susquehanna Service Dogs near Harrisburg. They sent me an application today. I have three months to fill it out.
The flow chart of initial steps for a service dog
The application requires my demographic, medical and lifestyle information, plus the financial statement saying that I will pay the $5,000 necessary if I get into the program. I need two letters of support— they need to come from people who support me having a dog and promise to support me and the dog together for the life of the dog.
I also need three references.
And a statement from my doctor.
I just thought I’d document my thought process and journey here. Because I’m hopeful, and doubtful, excited and afraid.
Do I want a dog? Can I handle the commitment? Am I the right kind of disabled to benefit from a dog? Can a dog help me be safe? Can I maintain an active lifestyle? Will they see how a dog would protect my independence?
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.
That’s the thing about disability— it like a kaleidoscope of worry and health and what you can and suddenly can’t and then can do. It’s a revolving door of chaos and bodily revolt.
Don’t get me wrong. I know I am lucky. Every damn day I get up, take care of myself, go to work, pursue my side business, go to the gym, and try to do what’s right for the teenager and the pets.
I can walk, even if I may never run that 5K I dream about. I work in a warehouse, even if sometimes it’s hard. I try to listen to and take care of my body. And I am grateful.
But despite all the doctors, the physical therapy, the personal trainer (thank you Apex Training), the vitamins, the stretching, the medication and the regular visits to my lovely chiropractor, Nicole Jensen of Back in Line Chiropractic and wellness center, I still “randomly” have accidents.
I trip over my own two feet and have hands that look like this:
And I fall through the old screen door in the garage.
I burst a tendon and spend 12+ weeks nursing mallet finger from taking off my socks.
I’ve broken bones, smashed teeth, fallen down stairs (most recently at the hospital).
I did this at the hospital
I’m getting older and I’m falling more. In a few more years, the teenager will be a full-fledged young adult and won’t necessarily be here to babysit me.
So I filled out a pre-qualification questionnaire. I probably won’t be disabled enough to warrant a dog, but I have the means to pay for it. I live independently and my condition cannot be mitigated with medication.
But I can walk and function you say, and I do. What could a dog possibly do?
Help me take off (and put on) my shoes and socks
Help me retrieve objects from the floor when I can’t bend.
Help me retrieve objects when I fall.
Help me get up when I fall.
Help me up and down the stairs.
Bark to alert neighbors or people in the household that I need help.*
And I wonder if a dog could “nudge” me if it notices I am unstable and get me to fix my gait or rest.
* this one is apparently controversial — some trainers claim barking in any form is a nuisance and that a service dog should never bother/impact the general public.
Like any topic within disability, it’s complex. But with each fall I take I feel progressively more vulnerable and fragile. It feels like another option to consider.
Monday. I slept pretty decently last night despite the oppressive heat. I had performed 105% in Freestyle on Sunday in the Stitch Fix Bizzy Hizzy warehouse, folding and shipping clothes while dreaming of new sundresses for myself.
I came home a little stiff and achy, a trend that seems to be back-sliding on the recent physical progress I made but the finger held up to its first day out of the splint at work.
I also came home early, as the Teenager planned a movie night for blind friend Nan to watch How to Train Your Dragon, a movie I have not yet seen despite the fact that I made a Toothless stuffed animal at Build-A-Bear.
Nan and I were to stop and pick up dinner at Wawa and the Teenager had made homemade ice cream (that honestly was on par with Cold Stone Creamery). And everyone got their desired dish from Wawa— except me— as I wanted a pre-made salad from the grab and go cooler and apparently the cooler was broken. The employees were removing all the food and the floor around it bore wet floor signs.
So I ate leftovers out of my fridge.
The audio-described version of the movie was intense. The poor man doing the description didn’t have time to breathe.
I was in bed by 8 p.m. The cockatoo had issues at 2 a.m. But all-in-all a good night.
At work today, I was tired, hot and a little bored at my regular table in QC. I did 101%.
I’m still have issues with a strange burning and tightness in my right thigh, and dealing with that is causing lower back pain.
I got home from work and tentatively poked my head around the corner in the garage— checking to see if dog was in the yard. She was not.
I walked up the stairs from the car bay to the main room of the garage. Walking across the big open space in my garage, I tripped over my own foot and fell. I did some sort of corkscrew dive and fell backwards through the screen door to exit the garage then skidded across the floor. I scraped my hand, my knuckles, my elbow and I think my leg and knee.
But then I still went to the gym. Under Andrew’s careful eye at Apex Training, I did my workout. I felt better than when I arrived, even if I am still a little stiff and achy, but such is life with cerebral palsy.
Angel Ackerman 