Tonight is my 30th High School Reunion, scheduled in the casual and amazing environment of Richmond Brewing. Our classmates own the establishment and have agreed to let us assemble and celebrate without a lot of formal to-do.
But I don’t know if I’m going to go.
I was on the reunion committee. I love the food and the beer at Richmond Brewing. It should be fun.
But I’m stressed and if I’m honest, I’m scared. And I think this is probably the first time I really wished my service dog was already here. Because having that dog would relieve some of the physical barriers to attending, which might help my emotional issues.
I’m already showered and dressed and ready to mingle. But I’m struggling with my own mobility today– which if you aren’t a regular reader I have diplegic spastic cerebral palsy which means I have issues controlling my legs. Last weekend I took a medium fall. I didn’t do any permanent damage, though I did damage my expensive glasses, probably delayed healing of my sprained right pinky, and got myself some nasty bruises and bumps on the head.
But today I fell again. This is is going to sound ridiculous (my trainer Andrew can probably vouch for me here, I think he’s seen it happen) but I can’t pick up my feet today. Primarily my right one. It’s dragging. It got caught in the cracks between the sidewalk and down I went. No damage, my Apple Watch didn’t even alert.
Which is probably a good thing as I’ve been enrolled in the Women’s Heart Health and Mobility Study at Brigham & Women’s Hospital in Massachusetts and when I fall and my watch registers it, they call to check on me. I talked with them for a half hour on Monday.
I fell on the way to the gym, and my workout went fine, although at the same time, I struggled with some muscle control.
I went over to the Christ United Methodist Church for their craft and vendor fair where Joe Swarctz, our fearless illustrator and the creator of Echo City Capers, was selling the latest in children’s books. I didn’t fall, but every bump on the sidewalk or imperfection in the floor challenged my balance.
The Teenager has to work tonight, so I’ll be on my own for the reunion tonight. And I’m scared. It’s about 30 minutes up there, and with my recent layoff gas money is tight, plus I won’t be able to have a beer. And it would have been my father’s 75th birthday today, if he were still with us, so that has me in a horrible, dejected mood.
If I had my service dog, I would feel safer. I would at least feel more secure about my ability to navigate walking. And I would know that I would have another living thing there that could help me if something did happen. I know that all of my classmates at the Reunion would be helpful, but there’s a certain comfort from those who already know what you need and how to help. Because it’s a dreadful feeling when you have an accident in public, and people want to help and no one quite knows what to do or they do too much or the wrong thing.
I’m not sure what to do, but I know the choice is stressing me out.
But if my balance is already significantly compromised, I don’t know if traipsing around an old barn is a good idea.
I feel a little guilty right now because The Teenager has a sore throat and what appears to be the start of an ear infection. It’s a common occurrence for her and nothing says “back-to-school” like an ear infection on a 95-degree September day.
I had a good day, and despite my ongoing sensation of exhaustion (none of us who work at the Stitch Fix Bizzy Hizzy sleep well these days) I am experiencing an emotion I think I recognize as joy. It is bittersweet as I had to say goodbye to two work friends today, and many more will go tomorrow.
Speaking of the warehouse closure, I’m starting to feel unsure whether we are closing a business or a preschool. Today’s free pile included lanyards, insulated branded lunch bags, gift bags, inflatable guitars, bingo cards, and raffle tickets. Yesterday I brought home stickers, pipe cleaners, serving trays made out of cardboard-ish, egg carton material and I almost had a collapsible storage cubby but a random elderly colleague came over, took it out of my hand and said, “excuse me, that’s mine.” I handed it over because 1. I’m not acting petty over free things and 2. I was taken aback (but not surprised) by the gall.
My neighbor whose nickname I can’t recall had the other cubby and she offered hers to me, but I declined. She picked hers up fair and square. And really, I don’t need more random stuff.
I’m going to bounce around in this blog post, but I’ll try to use subtitles.
Sharing my words
So I went to my neurologist/physiatrist today and I gave her one of the Parisian Phoenix books, Not an Able-Bodied White Man with Money. We had talked about it the last time I saw her and she told me to email her the info because she wanted to buy it. No one has ordered that book since the last time I saw her, therefore I thought it was safe to bring her a copy.
She started flipping through it right away. She teasingly chastised me for distracting her, and I told her that next time I would save books for the end of the visit. She also mentioned she had a patient whose wife was considering approaching a breeder about a mobility dog prospect for her husband, and she (my doctor) wanted to know the name of the program where I am on the wait list.
My doctor believed it would be too much expense and too much of an undertaking for this couple to buy a dog and have it trained as a service dog, especially since they don’t even seem confident that a dog is right for them. My doctor suggested looking for a program, and I offered to speak with them if they so desired.
When I left the office, I discovered organizers of the Artful Dash on the Stirner Arts Trail here in Easton reached out via Instagram to ask if they could use photos from my blog to promote this year’s 5K. I, of course, gave them permission.
Medical stuff
Today was my last specialist appointment before my benefits change. My team and I seem to be on the same page, and they appreciate the fact that I pay attention to my body and try to implement lifestyle habits to counteract any health issues.
My gynecologist, primary care physician and my neurologist/physiatrist all agree that some of my current stiffness and bladder issues may stem from a combination of stress and change in exercise habits. Now that my increased sodium intake seems to have eliminated my orthostatic hypotension and decreased my fall risk, I am working on losing weight (ten more pounds off by Christmas I hope) and paying more attention to my urination issues. My current management of my potential incontinence symptoms includes using a toilet every time I see one, and honestly, unless I start having recurrent issues in public I’m not concerned. It could be, my neurologist said, that my theory that my days of bad spasticity means my bladder might be having spasms, too.
And the random tingling limbs so far is not a cause for concern. But, as always, I have a list of symptoms to watch for.
Random Caramel Apple Iced Coffee
We received Wawa gift cards at work last week and I stopped yesterday and got a caramel apple iced coffee. Now, I don’t normally like Wawa’s iced coffee. It’s too weak for me. But the cold brew was a $1 more and I’m cheap.
It was delicious, though I do wish the coffee were stronger and they never put enough ice in there so it’s always warm by then end. Because I don’t normally drink sugary coffee I was buzzed by the time I got to the gynecologist.
I haven’t written in a while. Again. I’ve wanted to– I’ve started blog entries and not finished them. I’ve posted on Parisian Phoenix’s web site. Please, if you haven’t subscribe to the mailing list over there or on Substack. Or buy a book. From Parisian Phoenix directly or wherever you prefer to buy books. We have an affiliate shop on Bookshop.org, that’s another option to consider.
Meanwhile, forgive the cornucopia of prepositions in that title.
And I think it’s time to give another work friend an official nickname. I’m going to christian another work friend, the one with the stylish purple glasses that really complement her skin tone, as “Faithful Bizzy Reader.” She is one of my tribe, one of us who has migrated from Midnight Society to the Sunday cohort to traditional day shift at our Pennsylvania Stitch Fix warehouse. Those transitions, as brutal as they’ve been over the last 16 or so months, have made us a raucous bunch. At least, that’s how we behave at our lunch table. She’s noticed my sporadic posts, and today I admitted that my physical health has drained me to the point where I have nothing left to write.
The disability/cerebral palsy/dog stuff
As I’m sitting here, my Goffin’s cockatoo is grooming me, and I’m trying to get her to trim my hangnail. She’s really good at hangnails and splinters. If you never heard the story of the raisin that fixed my gait and how Nala the Goffin removed my splinter, you can read that story here.
I have dealt with various levels of pain on and off for more than a week now. I prayed that it would end with my chiropractor appointment last week, but it didn’t. It went from an eight to a two, so I was happy with the improvement, but then cycle of vacillating between slight and excruciating burning continued for days. My glutes, my lower back, my quads and sometimes my knees scream horribly. And when an “attack” comes upon me, standing there takes all my energy and makes me want to vomit. The burning sensation never goes away. My quads and lower back are throbbing with about a two of pain right now, seated in this chair at my desk. And my calves are pulsing. Maybe even spasming.
I tried taking more muscle relaxers. I tried exercise. I tried rest. Nothing seems to make it better or worse. I even brought Sobaka with me to the gym. (If you look at the photo on the right, that’s Greg who founded Apex Training with our neighbor princess dog who has been staying with us this week. Also, my name is very close to the upper left hand corner on the chalkboard wall.)
Interestingly, my trainer Andrew said my posture in some of my core related movements looked good. But man, every exercise was a struggle. Even the “pop-squats” he asks me to do, merely sitting down and popping back up as soon as my butt hits the bench required a lot of concentration. And I honestly don’t know how I survived hamstring curls as my legs haven’t wanted to cooperate with things like basic walking or stretching out my quads. But I did it. I was really hoping the extra blood flow would help.
But it didn’t. And after so many days of inconsistent pain, I just want to sleep for a week and stream TV.
My toe and my Morton’s neuroma have not been bothering me, but I did order my latest pair of shoes a half-size bigger.
And in positive news, I received an email from Susquehanna Service Dogs that they received my post-CTE (canine therapeutic evaluation) paperwork and will be reaching out to schedule a home visit. The final step between me and the waiting list for a service dog. “Both you and [The Teenager] provided awesome, valuable feedback in your emails,” my coordinator in the program wrote. “I’m glad that you had yet another chance to work with Miss Katydid– she is spunky!!”
The Stitch Fix stuff
I’ve been struggling at work. Luckily my stats, even at my worst days have remained around 100%. I’ve been on a downward spiral ever since I got sent to work in inbound processing for a day. That day, working on the back of a line on a table forcing me to pass baskets pretty far forward and to my right, shifted something. I don’t have an injury, but ever since that day, the pain I’ve grown familiar with in my hip has moved into my tailbone and quads. It’s nice that my femur no longer feels like it’s poking a hole through my pelvic bone, but now my muscles of my lower body always feel like they are overtaxed.
Anyway, whatever is happening in my body caused me to miss metrics three days in a row and now I’m in the middle of a probationary period of sorts known as “focus,” a first warning where Stitch Fix, my supervisor and myself work together to discover how Stitch Fix can “support me” because four rounds of “focus” can lead to termination.
Or I’m guessing will lead to termination.
I don’t know what to think– and once again I find myself placed in a situation where I need to be more of an advocate than I ever wanted to be. I enjoy my job. I love the people. I find the wages and benefits fair. But will it come to the point where I have to argue that 1. Their lack of following my approved medical accommodations during that day in inbound may have caused this whole situation (and I did not advocate enough for myself at the time, because I didn’t know it would f*ck me up) and 2. I have worked for the company for nearly two-and-a-half years and I have always experienced periods where I just cannot perform like the average person. Their recent change in metrics have placed me at a disadvantage, and I still have the capacity to do just as much work as the average person over longer periods of time, I just cannot do it every day. And the two days a month of grace they allow us does not fit my body.
So… keep in mind… yesterday I did 136 fixes, which is 105% of the daily minimum expectation of 130 fixes. I could have done 140, but I slowed down toward the end. In the old system, those extra fixes would have cushioned my numbers. Today, I did 130 while fighting nauseating pain and fighting for balance. I could have done 131, but again, it won’t matter. But in the old system, had I done 140 and 131, that puts me 11 fixes ahead for the weekly average, which means if I only made 120 later in the week, I would still hit my numbers.
I understand that they need consistent performance, but if you know an employee is giving 100% and that employee has a documented disability, that employee deserves a little bit of leeway.
I have a lot of questions about this “focus” concept. But, if once I get out of my focus period, how long do I have to perform at 100% before I end up clear of my record of first focus, because it’s only a matter of time before my body can’t do it. So, how long do I have to last before receiving a second focus, versus another first focus?
The fun Stitch Fix (fashion) stuff
There are several items in the Stitch Fix inventory I have wanted for a very long time. One is the Papermoon ember sweatshirt in dark gray that reads, “Weekend.” I love the cut of the Hiatus t-shirts. There is a Lagerfeld ruffle, striped tank top. Some Liverpool plaid pants. I could go on…
And since I received my discount back from The Teenager, I went on a bit of a shopping spree and bought some sale items. But, meanwhile, I kept thinking of the Skies are Blue Hannah modal blazer in magenta. It’s normally $88, incredibly silky, and the perfect color to represent Parisian Phoenix at events. Don’t confuse this with the Skies are Blue boyfriend blazer in magenta– the Hannah blazer is sleeker, softer and less boxy.
I earmarked the blazer as a favorite in my Stitch Fix account. It popped up in my proposed looks, as it does in the photo to the right. I already own that bag. I love that bag, the Urban Expressions utility tote in mustard if memory serves. I love the dress, but my middle-aged saggy mama belly couldn’t pull it off, and I would certainly wear those boots. But seeing this look made me cave and buy the blazer. Thank you employee discount! It headed out from the Breezy in Atlanta and should be here Friday.
The boring stuff
Finally, in household stuff: I still need to finish my local and state taxes, and pay the per capita tax. My drivers license renewal form came. I cleaned the air purifier in my bedroom (primarily caked with that chalky white bird dust) and must do a deeper than usual clean of the two cat boxes in my bedroom because I’m smelling ammonia in there. The Teenager had chicken quesadillas on the menu tonight. And I have a library meeting on Zoom at 7 p.m. I serve on the board of trustees at my local public library, the Mary Meuser Memorial Library.
So, there will be no sleeping for a week or streaming TV. Instead, I will attend my meeting and collapse in bed in exhaustion and get dressed out of the laundry basket in the living room because I just don’t have the strength to carry it up the stairs.
The euphoria of today is wearing off after miles of traffic, construction zones in the rain, and accident after accident at the roadside.
I got up with my 4 a.m. alarm after an uneasy night of sleep, primarily because I knew I was driving down to Susquehanna Service Dogs’ new training facility about 75 miles away. Alone, as the Teenager had clients. Which made her very unhappy because DOGS.
Took a shower. Drank some coffee. Even did some work on my novel, Road Trip, the next volume in the Fashion and Fiends series.
Went to work. Only performed about 89% despite getting the refixes. My toe was burning, my neuroma pain was back at between a 6-8 and my hip was uncomfortable, feeling like it didn’t want to bend. I didn’t want to take my Baclofen, because even though I have had success taking it in the morning… it felt like tempting fate in a bad way to take a muscle relaxer before a solo road trip on a rainy day.
I opted to wear my Kassy Boot by DV/Dolce Vita from Stitch Fix. I agonized a bit over which shoes to wear. Did I wear my work shoes so I could walk as I do in flat soled Vans? I decided on my cowboy boots because it shows how I walk in public. And I can always take my shoes off.
The drive to the facility was boring thanks to the rain. I had hoped to stop for coffee once I got my bearings near them, but I had forgotten how much nothing there is in the area around the Rt. 78/81 split.
When I arrived, a service-dog-in-training came to greet me, as a test of his interaction and focus with new people around. I was told to pet him only when he successfully remained in his “sit” after his trainer told him to “stay.”
We tried three times, but each time he stood. So we didn’t get much petting done.
I read some of my book, made some notes in my journal and willed myself not to look so red. I got very nervous when the candidate before me seemed much older than I am and had a cane. Of course, my immediate thought was, “I’m not disabled enough to be here.”
I got to meet the woman I have been working with so far, but at this stage of the process I will now be working with someone new. The interview team included a volunteer, a handler, the administrator in charge of dog training and the person who I will be partnering with for the next stages of the process.
Today allowed them to ask me questions about my condition, what I think a dog could do for me, about me in general and I got to work with an ambassador service dog. She showed me all the tasks she could do and I got to walk with her using different techniques: just a leash, a soft strap, a stiff mobility harness and a leathery mobility harness that is softer for me to hold but more snug on the dog.
They videotaped me walking, with shoes and without, with the dog and without. The dog was such a goof and a show-off. I think she knows her job is to make people at ease and happy as much as it is to show people what a dog can do. The staff and volunteers complimented my boots.
The drive down took 90 minutes, but the drive home took almost three hours. But you know what? It was an amazing experience. To work with a trained, experienced dog and get a feel for the people– paid and volunteer– that do this incredible work.
A dog is an incredible commitment, but I also see how much the dog can do and what a valuable relationship a service dog and handler team can have. I’m so glad to have had the opportunity, and if the day comes that Susquehanna Service Dogs can place a dog with me, I’d be very grateful.
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.
Angel Ackerman 