The bee, the blues, the books and the… pizza?

I will be telling parts of this story on my Substack newsletter that I plan to post tomorrow morning. I write about my publishing company, Parisian Phoenix Publishing; books, the ones we publish, books for writers and fun books to read; and writing. You can subscribe here.

I had booked a table at Books and Booze 2 at Madness Distillery in the Country Junction Plaza in Lehighton, Pa. (With a name like Madness Distillery, how could I stay away?)

I had packed the books earlier this week but left decisions about signs and other marketing materials until today, and despite sleeping decently last night, my brain would not kick in. So it took all my focus to get out the door on time.

And I had to drop Eva off at her dad’s so she could borrow his car for the afternoon.

About a mile from the house, a bee flew onto my windshield at a stoplight. I pointed him out to Eva. About four more blocks down the road, he was still sitting there. I said to Eva, “If we take him all the way to your dad’s, he’ll be more than a mile away from his hive. How will he find his way home? Will he have food? Will he be warm? How is he just sitting on that windshield?”

And then I added a final thought: “If we leave him at your dad’s, that’s like someone dropping you off in England and telling you to swim home.”

We stopped. I said my goodbyes. I waited for my daughter to cross the street. The bee had not gone. So I resumed my drive.

About 4 miles later, I got onto the highway. Little bee did not fare well as my speeds increased. He slid across the windshield (toward the top), putting one foot down and another up, trying to get his grip.

I had to speed up even more, and now we’re about 12 miles away from home. The bee is starting to curl into himself and press down into the glass. I wonder: Would it be kinder to turn on my windshield wipers and smoosh him?

I can’t stop watching him, but I have to, because I’m driving 70 miles an hour on the highway. I’m getting upset, and fighting tears as my nerves fray. I ponder exiting the road because of this bee. I call Eva. I tell her everything.

“Mom, it’s a bee.”

“He doesn’t deserve to suffer. Nothing deserves to suffer.”

“Mom, life is hard.”

I cackle. I hang up. I get one more mile, and the bee rolls into a tight marble and disappears. He was on my windshield for about 15 miles.

About this time, I realize my mother married my father 50 years ago today. My father died three years and eleven months ago. My wedding anniversary was Thursday. My husband and I married 26 years ago. We splint up six years ago. And my mother’s 71st birthday was also Thursday.

The GPS took me past the site of the dirt track where my father raced micro-stock when Eva was a toddler. Past the post office where my father got his mail. Past one road to his house. Past the diner where he ate most of his meals. Past the gas station where he bought his cigarettes. Past the other road to his house. Past the funeral home where we had his services.

My parents divorced when I was 15. But my mom always loved my dad. And I think he never got over her. So I texted her when I arrived at my destination– which was alongside the lake where my dad would drive his boat.

“You married Dad 50 years ago today. I miss him soooo much.”

I set up my table, met some of my fellow authors, and tried to shake off my nerves.

Photo by author Shannon Delaney, a family member of my dear friend Mitzi from Pocono Lehigh Romance Writers and Greater Lehigh Valley Writers Group

I counted about 20 people who attended the event– not including anyone with the other vendors at the event. I sold three books: two hardcover copies of Larry Sceurman‘s Bookworm’s Magical Journey and one advance copy of Geraldine Donaher‘s young adult Mouth Shut Head Down, which doesn’t officially launch until January.

The distillery had a sign in the window. It read “Adult Book Fair Today.” I think what they meant was “Book Fair for Adults today” or because it was a distillery, “Book Fair today. Adults only!”

But it immediately made me think I should have brought more erotica. The only erotica title I brought was Juicy Bits. Most of the authors for Booze and Books 2 were romance authors, and it looked like the most popular offerings were romances-with-shirtless-men-on-the-cover. It looked like most vendors sold 2-4 books, though I later learned that some vendors sold none. (To be fair, tables cost $10, so no one had huge expectations of kicking off a bestselling book tour at this event.)

The event is between coal country and the Poconos, so I thought my spicy horror novels would do well. I also brought our romances, Trapped: What if Skunks Were Matchmakers? and Any Landing You Walk Away From… (the author of the latter, Dawn O’Harra, is from the Poconos). I made a Halloween section on the other side of my novels, with Hugo Yelagin‘s Lovecraftian Deadlights and Eva Parry‘s tarot journal. Any Landing served as a transiton into non-fiction, and I brought Motorhome Gypsies and Coach of the Building (as the author of Coach teaches public school in the area) and then Larry Sceurman‘s fiction to appeal to any men accompanying wives and his children’s book because many romance readers are moms. And Geraldine’s book? Not even sure why I tossed that in.

Two hours into the event, my mother returned my text. “Hadn’t even given it a thought.”

When I left the event, I was hungry and pining for pizza. The GPS took me a different way home, perhaps recognizing my emotional distress from the previous route. It took me home the route I had anticipated on the way up– it took me through Palmerton, Pa., one of my favorite places. I celebrated my 49th birthday in Palmerton. Read about that here.

As I was driving away from the venue, I thought to myself: That looks like I’m heading toward Palmerton. Maybe I can find that awesome little pizza shop in Palmerton. I looked at the GPS. It told me my next turn was onto Delaware Avenue, which, if I remembered correctly, was the main street in Palmerton. And the pizza shop was on it.

Sure enough, I entered Palmerton. Pulled up right in front of the pizza shop. Went in, ordered two slices dine in, grabbed a boxed iced tea, and paid the employee $8.64 (which is roughly the price of one Grilled Club Chick-Fil-A sandwich).

15 minutes later I was back in the car.

That little detour changed my mood. Perhaps a gentle reminder that we find our own destinies and don’t have to conform to outside expectations.

Six months

As I am part of the Amazon Vine reviewer program, we get a lot of packages. I spend about an average of an hour every day opening packaging, checking out products and updating what items we are ready to review. The Teenager had a moment of brilliance, and created a package-opening station in our sun room– a garbage can for packing materials, a recycling can for the cardboard once I’ve broken it down and I set my Stitch Fix tool bag on the sill. It contained my ceramic knife, my safety box cutter, a sponge/eraser and my fingerless gloves among other little items like pencils.

The safety box cutter migrated to my desk. My Stitch Fix branded fingerless gloves ended up on the floor.

But on Monday, when I went to open a pile of packages, the clear bag of tools was gone. Just gone. My guess is that it fell off of the window sill and into the garbage can when The Teenager took out the trash, and it looks like it did it before she changed the trash as the trash can is empty. And the trash has long been carted away.

It’s nothing important. But the loss of the small cosmetic-bag-sized collection of tools from the warehouse made me pause and dropped me into a sadness, a grief, that I did not anticipate.

You see on Friday, on Friday it will be six months exactly since I left the Stitch Fix Bizzy Hizzy. I have had many interviews, many hopes and still put out many applications. In my heart I still hope to make my small publishing services and book publishing operation a success and live off that, but unemployment will end very soon so the reality looms.

I still believe I can succeed.

I did not anticipate the way the universe seems to be saying, “it’s over. It’s really over. Do not cling to these thoughts and items you clung to in the warehouse.”

I have a few friends who I have kept. Many other people I had hoped would stay in touch and it doesn’t seem to be happening, but life goes on.

I am so surprised by the depth of my sadness at losing a ceramic box cutter and a spongy eraser thing.

But sometimes you really, really have to let go to move on. And in my opinion, the universe or “God” or whatever creative power you believe in, kicks you in the ass to make you do it.

So one of the products I’ve reviewed is a pack of French motivational stickers– and if you know me, you know I adore the French language. These stickers make me happy and I am plopping them onto my computer and my calendar.

Another was a small message board that I have set upon my desk and I periodically change the quote and my goal is to post quotes from my clients, because my clients and authors are the people who keep me going.

Joe recently ordered a lot of hardcover books for the upcoming Pennsylvania School Library Association conference and when he asked me how much he owed me… well, it was a nice chunk of money, ending in $6 and some off change. He immediately texted that he would get me the $6 soon and for some reason that made me cackle. So I put it on the board.

And then, more recently, I had to announce the discontinuation of my “friends and family” rate for clients and one of my clients sent me a long email supporting my decision because I am not running a charity, he said, and I need to keep a room over my head, gas in my car and (my favorite) Panera coffee in my belly. So I added his quote, “You deserve to have an adequate income,” to my board. (I also placed the board beside my enormous “I’m kind of a big deal” mug and my silly jellyfish aquarium lamp.)

Last week created a lot of stress for me. Good stress I guess because clients all needed things and checks are coming in this week. But it also taught me that I really need to protect my sanity in this endeavor.

Today, I took the checks to the bank, deposited some cash payments from clients, and took my neighbor who just had cataract surgery to run errands. We visited the municipal building, which I had only ever seen the council chambers. That allowed me to view a few Wilson borough artifacts.

The Western Addition of the City of Easton, a blue print map of building plots available, dated 1893, hung on the wall. It was indeed blue, like the slate blue of an old fashioned chalkboard, and it showed what would later become Wilson Borough.

Laughter, tequila, good wishes & appreciation: gathering to celebrate a friend.

These are some of the people I spend my days with at my day job. I know their struggles. I see their growth. I feel their stagnancy when they experience it. And they share mine.

Our dear colleague Sassy has procured a new job– one in her field where she will help so many people, just like when she scraped me off the sidewalk earlier this month and stood by another work-friend’s side when she had a very severe heart attack. It’s no surprise that she’s returning to the medical profession where she can use her eagle eye, her sassy but loving mouth, and her wisdom to change people’s lives for the better.

As she changed ours.

These photos look a lot like our lunch table at work. The atmosphere was jovial and a little obnoxious, a lot like our lunch table at work.

We talk a lot about getting together outside of work for bowling or pizza or axe throwing or roller skating. But life happens and everyone has something going on so we don’t force the issue. But Sassy is leaving, and we talk a lot about tequila so this time the plans solidified.

And they involved tequila, in fancy margaritas– my first was cucumber– and Mexican food at a place that used to be a Pizza Hut decades ago (and I remember it as such) called My Tequila House. The food was amazing. The drink menu diverse. And next time, when I have more of a budget, we’re getting the duck carnitas tacos.

What amazes me about the event was how easily the conversation flowed, how different we all are as people but how we’ve all come together. We all worked together on second shift, “Midnight Society,” and moved together to the 4-day 10-hour shift “Sunday Cohort,” and now been relegated to Monday to Friday standard shift with those I lovingly refer to as “the day shift bitches.” These changes all happened with sixteen months or so, so at this point we’re all practically trauma-bonded, moving together through a world that keeps changing: new measurements, new overlords, soon new snacks. You get the idea.

Let your smile change the world, but don’t let the world change your smile

The youngest among us is barely legal drinking age, the older close to retirement. There’s Southern Candy, Sassy, My Faithful Reader, and some others who I might mention from time to time but who haven’t earned full pseudonyms… like the leader who’s also a very talented photographer, the young woman who encourages everyone while she herself has not only had to rebuild her own life but care for parents with serious health issues, the woman who has a sporty, young nephew and an adorable dog, and the supervisor who returned to work too early after surgery out of stubbornness and now advocates for everyone else’s recovery.

Sassy made us small gifts, gifts she made carefully with her own hands, delicate and beautiful. And meaningful. There’s a magic that occurs when people congregate, even more magic when they quietly support one another, and even more magic when something happens and they come together.

Part of that stems from corporate culture at our employer, more comes from the attitude we had on second shift. We learned to work as a team in an environment that focused on individual metrics in very simple, specific jobs. We had a chance to be different.

And even though our backgrounds range from various fields– restaurants, personal banking, medical, communications for me– that diversity strengthens our bond because we know who on the team will support us in what area when we need it. There’s a trust and a sense of integrity.

And as much as we love Sassy, I think we were celebrating our legacy as a team.

Busy, busy: Taking care of yourself takes time (but we always make time for adventures)

It’s been what, a week?, since I wrote in this forum. I know, I know.

I have been trying to write. I have plans to brainstorm ideas for BookTok, projects to edit, and I decided to make short, very real, unedited videos for BookTube.

But, as I left myself 30 minutes to write this blog entry and “wasted” 15 minutes of that panicking over a medical form (all part of “things that have happened since last week”) I may have to leave you with a list:

  • The Intermittent Leave I submitted to my PCP was illegible once printed out, so I typed a new one over the weekend and sent it to the doctor’s office. I had not heard from them, so I double-checked the email this morning and thought the form I sent them was blank. I panicked, discovered my eyes had misled me, but had already messaged the office so now I probably have high blood pressure and look like an ass.
  • My favorite foster, Khloe the Sassy Princess and Cuddler, went to Chaar in Forks Township in search of a home. I went to visit her before the gym Wednesday and she made me biscuits.
  • My workouts have been brutal… I mean amazing, really I do. I’ve been doing what feels like some great weights and focusing so hard on form.
  • We had a heating oil delivery yesterday and I hadn’t anticipated that for another three weeks. $700. Ouch.
  • I had brussel sprouts three times this week. I do love my brussel sprouts.
  • I saw Nan Tuesday night and we practically made a comedy routine out of reading her junk mail.
  • My creative brain is swimming with ideas. Is that because I have no time?
  • I am soooooo close to fully performing at work. They messed up my accommodations Tuesday. My percentages are 98%, 103%, 103%. Accommodations make a difference.

But here’s my big take away:

Feel free to let me know your opinion.

Regardless of whether you have a disability or not, and that can even be a personal determination, getting older sucks… anyway… Taking care of yourself takes a lot of time. Monitoring your habits (food, sleep, exercise), health and treatments take so much time. Finding and visiting doctors. Physical therapy, training sessions or independent-led exercise. It’s ridiculous. Filling out that intermittent leave paperwork really drove home how much time I spend taking care of myself.

Maybe it is easier to neglect oneself. Maybe it would be so much less stressful to eat what I want, accept my “limitations” and live a more sedentary life. Maybe it is easier to stop fighting and be miserable. Maybe it takes an exhausting amount of energy to take care of oneself.

I’m a doer, a fighter. It’s who I am. So I will never stop trying. But now I think I see why some folks don’t.

A reset? The NaNo Dilemma, a podcast/YouTube interview, and some disability philosophy

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.

3/4 of the year: The August medical update and ‘the feels’

Yesterday Nancy (my blind friend, poetry editor and my sassy mentor/ partner in crime) and I were in her bank. The other local branch of this big name bank had had some sort of building emergency. That office was temporarily closed, so the customers were lining up with us. The bank was understaffed (the man in charge had a lovely amiable personality and told us all if we wanted a job he needed two tellers immediately. I turned to Nan and asked if she wanted to apply. She laughed).

We were fourth in line, with a small brown man with an accent in front of us. He overheard me tell Nan something indirectly about my weight (the fact that I had worn jewelry made me jingle and I had on heels so I was unusually tall). And I said something about finally having the mindset to make an effort even if I hadn’t lost any of my stress-induced pandemic weight.

The man in front of us softly said, “you look great” (and when we left I got cat-called so it had to be true, I suppose). A few minutes later the man mentioned that seeing Nancy reminded him of the story of Jesus healing the blind man.

Now, before I continue this story, picture us in the chaos of an old-fashioned bank building, the arched ceilings and the old mega vault. Picture the long line, socially-distanced. Picture awkwardly-gaited me and the little old lady with the white cane on my arm.

I have heard the stories of disabled people dealing with religious folks who want to pray for them or with them. And this man muttered something about blindness being a blessing. And Nan mentioned something about disability teaching lessons to those around us and reminding us to have patience.

“It’s a blessing,” the man said.

Easy for him to say. It reminded me of something I heard on a podcast interview with a martial artist who has cerebral palsy. “I can do anything anyone else can do,” he said.

I mean, it’s the crap we always hear. And we can do anything anyone else can. But we also can’t. There’a footnote to that statement no one ever told me: you can’t expect to do it the same way they do it. You won’t look like them or necessarily achieve the same things in the same order. The able-bodied will never understand how different simple tasks that come easily for others can feel impossible to us. I spent my whole life trying to do what everyone else did, they way I saw them do it. But I didn’t understand that the physics of my body is very different from anyone else’s.

My legs and arms are often covered with brushes and scratches from bumping into things. I stumble and fall. But, I haven’t had a serious fall since August 3. That’s exciting. My average since the mallet finger has been every two weeks. I’ve now made it almost three. Today, I have my follow-up with my doctor, and I had called his office when I started the application process for a mobility dog through Susquehanna Service Dogs.

I’ve blogged about this most recently here. I connected some of my earlier posts about the process and decision here.

I asked his staff if he could fill out the medical form, because if he didn’t think he was the right person I could call my neurology physiatrist. She was/is amazing but I only met her once, two months ago. I have been with my primary care physician for 14 years.

His staff checked with him and they assured me that he not only fill out the form but that he would do it at my already scheduled appointment today. I normally see my doctor twice a year, in winter for my physical and in summer to review bloodwork and health issues that may pop up during the year.

When I ruptured my tendon in April, I visited him because my entire system was thrown off balance with the injury and although the specialist had allowed me to return to work (rightfully so), my hip was in pain and I was falling all the time. He signed me out of work for a short recovery leave of about three weeks, so I could work with Andrew, my strength and fitness coach at Apex Training, my occupational therapists at The Institute for Hand and Upper Extremity Rehab, and my talented chiropractor and physical therapy guru Nicole Jensen of Back in Line Chiropractic and Wellness Center.

I have documented this journey and have started writing my cerebral palsy memoir, Gravity is a Harsh Mistress with clever title by my estranged but still strange husband. Blog posts with connections to cerebral palsy are listed here.

My primary care doctor followed up with me after my specialist visit and allowed me to return to work at the end of May, even though my finger was still in a cast. We made this decision because the effort I gave Andrew had paid off and my hip was no longer bothering me. In addition, I had my first meeting with my physiatrist a few days later and I wanted to see how I felt after a week back-to-work to relay that information to her.

Anyway, point is, I haven’t seen my primary care doctor since May. He hasn’t seen my healed finger. He hasn’t heard about some of my rather dramatically majestic recent falls.

My weight today was 155, which is more than five pounds less than what it was at the gynecologist’s office last week.

I arrived early. I was in my exam room before my appointment time. My friend Gayle was bringing me her laptop so I could work on the cat book edits. I told her to put it in my car as I didn’t have time to run to her house and didn’t know how long my appointment would be. She ended up at the wrong medical practice. There are two similar St. Luke’s affiliated family practices in neighboring buildings.

I was texting her and making notes waiting for the doctor. I noticed my phone buzz again. My mom had sent a photo via text. That’s odd, I thought to myself. Mom hasn’t said much to me since the Teenager and I surprised her companion on Father’s Day. She didn’t even text me when she went to Florida to visit family. So, what was this?

I opened it.

I shouldn’t have. It was my father’s tombstone. My mother, despite having divorced more than 30 years ago, visits my father’s grave regularly. She’s grieving him, as many people are, and she is also grieving two of her brothers who died in the weeks before my father.

I couldn’t hold back tears. I have not visited my father’s grave since the funeral, and even then I did not get out of the car. I don’t see the point. The funeral had alienated me, and I didn’t feel like I “belonged,” and that’s not due to my family. But my father wasn’t there anymore. It was a corpse. And I had no need to see it formally placed in dirt. He was gone. And no ceremony will change that. Even now, I’m crying again.

Several times I regain my composure and several times I lose it, until eventually the doctor knocks on the door. So, I had to explain.

I mean, I suppose I didn’t have to, but it seemed only fair.

That meant we spent the first ten minutes of my appointment talking about boundaries, grief, and therapy. I’ve been with my psychologist even longer than I’ve been a patient of my doctor and the two of them know each other and speak so sweetly and kindly about each other.

We moved on then I think first to my recovered mallet finger. We reviewed my bloodwork. I told him I had to go get more iron, as my previous bottle had run out and I was using a different iron that didn’t seem to be working as I told Nan yesterday that I “almost bought a pair of potato chips.” Now, when you’ve had a history of iron issues and anemia, word confusion is a symptom. And I have been using wrong words in speech for at least a week. So either the iron is dipping or I should be screened for early onset dementia.

I almost bought a pair of potato chips.

I used this opportunities to ask if there were any other adjustments he wanted to make to my vitamin regimen. He suggested sticking with the 2000 ius of Vitamin D3 (which I take with calcium).

Next, we tackled the form for the service dog. Much to my relief, he thought the dog would be extremely helpful for me. And he also commended me for the work I do to take care of myself. In the evaluation for the service dog process, I was telling stories from the gym and mentioned how my ankle finally popped for my chiropractor Wednesday night, and how after my last fall I asked the Teenager to evaluate my walk, then she told Andrew this info at the gym, and he monitored my movement, until the next day I went to the chiropractor and she had to maneuver my hip back where it belonged.

She said I needed to do more single leg muscle stability work, which I then told Andrew, and I relayed to the doctor the horrible exercises Andrew made me do. And my doctor chuckled.

He once told me that he doesn’t worry about me because he knows if he tells me to do something I will do it. And I think Andrew and Chiropractor Nicole see the same commitment in me. My doctor today said this is why I am in better shape than many of his patients, despite my issues.

He handed me the completed form, which is the type of thing the office signs decry “requires 7-10 days” and payment of form fees. I am so grateful for my team, their respect and their guidance.

Meanwhile, while I am setting up my annual physical for February 2023, I see a text from Gayle. Remember Gayle? Apparently, she forgot my current car was a Volkswagen and was wandering in the parking lot looking for a silver Nissan. (My last car was a red Altima.) I didn’t have my Stitch Fix parking permit on my mirror. The car was clean because The Teenager has her own vehicle now. And there were four silver cars– none of the Nissans– in the parking lot.

She meandered around so long that a staff member came out and asked if she was sick or needed help. When I left the building, Gayle was next to my car. I had been with the doctor for an hour.

“You’re still here?” I said.

“I’ve been out here 45 minutes,” she said. “So when you replied to my text I figured I might as well stay and say ‘hi.’ What’s five more?”

Only you, Gayle. Only you.

Updates, announcements and anecdotes

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

F. Bean Barker, hard at work

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

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

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

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

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

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

Just my theory.

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

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

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

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

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

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

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

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

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

Simplify: a health update and a Dunkin review

I went to the chiropractor yesterday. Nicole at Back in Line Chiropractic and Wellness Center warned me that she “beat me up” more than usual.

That’s amusing to me as I was in an incredible amount of discomfort and she eliminated 90% of it.

I explained everything going on— my stress, my lack of good sleep, the possibility I had omicron, not eating right or taking my vitamins, not stretching or working out, and working overtime.

But as soon as she touched the back of my right hip, the tenderness immediately told me there was an issue I hadn’t thought of: my hip.

I need to remember that when I struggle to use my legs I might have an issue with my hip.

This post explores the last time I had this same issue: click here.

And if you look at that entry, you will see my mental health had declined in similar proportion to what I experienced earlier this week.

Pain and shifts in mobility really do have profound effects on our mental health.

So maybe next time instead of focusing on all the things that are going wrong and contributing to my lack of function and mental health, I need to be quicker to ask for medical intervention because — as I already know— I can’t trust my pain.

My pain recently didn’t feel that bad. But all the signs, including 65% work performance indicated otherwise.

I really need that physiatrist appointment to get scheduled.


In cheerier news, I recap some of this in a YouTube video I did yesterday while trying the “brown sugar cookie” latte and new egg bites at Dunkin.

See the video here.

If you want the PowerPoint version of my impressions:

  • The Brown Sugar Cookie flavor is boring. To me, it tasted a bit caramelized and like “toasted white chocolate” syrups. I miss peppermint for Christmas and pistachio for spring. These flavors now only come in peppermint mocha or pistachio mocha. I don’t like mocha in my coffee. Unless my friend and colleague Mary Barnes, now deceased, was the barista making a salted caramel mocha about eight years ago before everything came in salted caramel mocha. Starbucks always introduced it for the holiday season. But back to Dunkin and Brown Sugar Cookie, the teenager compares it to gingerbread. I didn’t get the spice of ginger.
  • The bacon cheddar egg bites… these were expensive but at 17 grams of protein and 280 calories they can substitute for a meal. But $4.99 for two miniature donut shaped eggs? Cute, definitely. Firm and crisp on the outside. Soft on the inside. Smoky, cheesy flavor. Again, boring. Strange mouth feel. But a very practical and utilitarian option.

Forgive Yourself

I believe it is Wednesday. I’m fairly sure because the teenager keeps talking about taking the garbage out, and I had a chiropractor appointment this morning.

She and I talked a bit about the mental component of health and wellness.

My blog post yesterday reinforced it for me. The “do one more” mentality.

But at the same time—

No matter who you are:

  1. Forgive yourself when your house is dirty. Sometimes you don’t feel well; sometimes you are emotionally stripped; sometimes you are busy living life and enjoying the ephemeral moments.
  2. Forgive yourself when your values and what is important to you doesn’t line up with the rest of the world. Yes, I’m a crazy cat lady and I work in a warehouse even though I’ve had a professional career and lots of education.
  3. Forgive yourself when you can’t keep up. Yes, people want you to do things and people need you, but sometimes you can divide a project that you could do in one day over four days.
  4. Forgive yourself when you feel needy. Sometimes you have to ask for that hug or for help.
  5. Forgive yourself when you want to be alone. Don’t guilt yourself if you need rest or merely some quiet time.
  6. Forgive yourself if you aren’t where you want to be. Sometimes the journey goes unexpected places. Embrace it.