Another piece in my understanding cerebral palsy series
Technology can offer an opportunity for a great equalizer or perpetuate a divide. In both cases, there is a complexity that arises.
That sounds vague.
But allow me to try and explain.
My friend Nancy, a talented poet and essayist, is blind. She has seen the rise of all sorts of technology from computers, to tablets, to the gambit of “smart” devices. She has experienced that when looking for accessibility, those helping her (whether it be staff at organizations for the blind or everyday customer service employees) view people without what they deem standard technology— smart phones, online banking, PayPal, computers— as lazy, poor or stupid.
I’m thinking about this, in part, because of the podcast A is For Abled. I listened to the debut 2019 episode (recorded on October 6 which the podcaster announced is world cerebral palsy day) at the Stitch Fix Bizzy Hizzy last night.
I am realizing more and more that platforms that YouTube, Spotify, Facebook, etc., provide more and more opportunities to connect with real people so many of the “products” people put out there are amateur. And I am not knocking on that.
But when people talk about there experiences you need to keep in mind that memories are not the best source of fact.
The first episode of A is for Abled discusses the host’s background— Kyle, his sister Cheyenne and his mother have a pretty comprehensive discussion about their family attitude toward Kyle’s cerebral palsy, his upbringing, public vs. private school in regards to disability resources and quality of education, sibling relationships, the various therapy and surgeries Kyle has had and society’s reactions to disabled children and more specifically Kyle’s gait, which they call “swagger.”
Kyle was 32 in 2019, so this makes him more than a decade younger than me. His mother was 19 when she had him and he is the oldest child. They are also African American so they make some comparison/contrast between society’s reaction to the disabled and the reaction to African Americans.
Apparently the show has completed two seasons. And it sounds like Kyle’s condition is very similar to mine.
Between his family, his therapy, his various exercise classes that his mom encouraged him to try (yoga, aqua aerobics, tai chi), private school and surgery, Kyle had a lot of interventions I didn’t have.
Things A for Abled pointed out (I have not fact checked these statements):
Like Karen Killilea (if you don’t know who I am referring to I talk about the Karen books here), Kyle had surgery (twice) for his hips to straighten them.
People with cerebral palsy often develop arthritis in their thirties.
People with cerebral palsy get worse as they age because the muscles and tendons continue to tighten. That’s why physical therapy and stretching is so important.
Hot Yoga not only provides the much-needed stretching and flexibility but also the heat automatically loosens the muscles.
To explore A is For Abled, find their website here.
This will be another long day-in-the-life style blogs. I never seem to know what will resonate with people so have it all, right? I’ll bold key words to allow easy skimming.
Adult FURR (Feline Urban Rescue and Rehab) fosters Louise & Khloe are still competing for my attention and unsure if they like each other. Two very different cats with very different personalities. Both really cuddly and are going to be great additions to any household.
Parker and Extra Crunchy of the ten little kittens that got sick with distemper are now neutered and ready for adoption. They are such loves, especially fond of human snuggles as they were syringe fed.
And of course Touch of Grey (another adult foster) still thinks she’s the boss. She definitely is more cat than dog and we have good reason to believe she has neurological issues which may contribute to her agressive mood swings but the teenager is working with her.
My original Saturday morning plan was to prepare an outline of the coffee and kittens fundraiser, but our cat foster godmother had two kittens for us. One black kitten from a very feral litter, but he was not hissy spitty and one who turned up with a litter of small kittens who obviously was older than them and had been on his own. That one looked a little like Crunchy but was feisty.
I nicknamed them Fuzznuts and Fluffballs in my head, not knowing their gender. I also considered our “cats are gods” theme, but these two were not a litter so we didn’t want to use a whole pantheon for them. I considered Elohim and Yahweh, but my daughter vetoed it. I worried someone might get offended.
But foster godmother said, “people always get offended.”
A DMX song came on the radio in the car on the way home. DMX passed away recently and rappers also have that badass cat attitude. We knew the black kitten was a girl and the grey a boy.
“What about DMX and Diam’s?” I suggest.
“Mom, no one knows who Diam’s is,” she replied.
Latifah? Salt and Pepa? Then it him me.
“Eminem and Slim Shady,” I said.
“Mom, they’re the same person.”
“It doesn’t matter. The black one can be Shady and the other can be Em.”
So now we literally have a cage of two kittens, Em(inem) and (Slim) Shady in our living room.
The teenager went to work at Tic Toc Family Restaurant at three, and I went for Nan, my blind friend. We had plans to visit Park Avenue Market for deli salads and meats and the Lidl for boring things like milk, cheese and half and half.
I casually walk through the store explaining every item I see, from snack items to spices to peanut butter in squeeze tubes and olives in plastic snack cups. I love food and I love weird so this is why Nan and I consider grocery shopping fun.
At Park Avenue, Nan indulged in some meatloaf and ham. I got the pickled Brussel sprouts, liver wurst, bacon maple potato salad, cranberry horseradish, and violet candy. And crab stuffed flounder we had for dinner tonight.
These will resurface tomorrow when Nan and I work and have lunch together.
At Lidl, Nan got yogurt, lemonade, milk, Mac and cheese and those amazing home baked cookies. I got produce, cheese, breads, chips, seltzer, butter and Brussel sprouts among others.
And when I brought Nan home I discovered someone hit and run my car. This happened in July 2019, too. But that was a full side swipe. At work. In a church parking lot.
Nails and fun with Beth
I came home and put the groceries away and got ready to leave for my friend Beth’s house, formerly Nails by Bethy at Hyperion Salon. She recently started a new career in commercial insurance (I think) and so won’t have time or stamina to maintain my fingers and toes.
But tonight I was headed to her house for “cocktails, dinner and board games.” She agreed to have my pineapple coconut rum drink ready when I arrived. I met some of her friends. Beth made chicken poblano with black beans, rice, coleslaw and pickles. And as I mentioned yesterday, we all played Cards Against Humanity when my family arrived. Her father brought the teenager over so she could be my designated driver.
Brunch with Mom
My mom and I have a tumultuous relationship probably due to trauma we’ve experienced in our lives. My mom has not had an easy life. Let’s face it, most typical folks don’t.
We had a talk last weekend and I agreed to visit her today. She offered to take me out to a swanky breakfast and let us stay for the parade for IndependenceDay that would be passing by her house. I don’t really like parades, and I’m sick of eating out.
So I requested a grilled cheese on rye instead.
It was delicious.
The teenager brought the Bean dog to visit Mimi and Mimi’s dog, Dog, was a gracious host. Dog is a miniature poodle.
Once we arrived home, I read a little more Karen by Marie Killilea before I opted to take a nap. I then stripped my bed, worked on the fundraising outline and went for a walk with Buddy and Sarah.
I stumbled on the sidewalk, but did not fall. Knowing I had borderline anemia made me feel better that my cerebral palsy wasn’t running amok.
For dinner, in my continued effort to eat more vitamin rich food to combat anemia, I made the crab-stuffed flounder, brown rice with pistachios, and sautéed some leftover green beans and the cabbage, kale and carrots in a Green Goddess Salad I bought on clearance at Lidl yesterday. I topped it with some rather stale sesame sticks purchased at Forks Mediterranean Deli at our last visit (which was too long ago).
My goal for the rest of the night is to work on the Wheel of Life in my July Silk & Sonder planner and finish Karen.
Happy Independence Day.
Remember that the founding of this country can be seen from many perspectives: as destroying the lives and cultures of indigenous populations, as a place to promote white Christian values, and/or as a place where people came to live according to what they felt was right.
So, I have come to the conclusion that all I have to do is call Nan and ask, “Are you busy?” and she will grab her white cane and meet me by the door.
Unless NASA has something going on— like a hatch opening or a spacewalk or a launch or a capture.
Today the teenager got up early, at 8 a.m., which in teen time is somewhere between “I had no idea the sun came up this early” and “wow, I can eat breakfast at actual breakfast time.”
Speaking of breakfast, the foster kittens have learned the word “breakfast” and their little ears perk up when you say it.
The teen wanted to go to Petco and Dollar Tree, while Nan and I had our eye on a brief trip to Grocery Outlet to look for smoothies and lentil pasta. Their circular advertised Bird’s Eye steam-in-bag lentil pasta, which Nan and I both like, for 99 cents.
It normally runs $3-4 per bag.
As a blind person, Nan likes the fact that she can make lentil pasta without dealing with boiling water as one has to do with traditional pasta and it’s not a mushy mess of preservatives like canned pasta.
We were both disappointed to discover that they only had lentil/zucchini pasta with olive oil, as opposed to the “sauced” varieties.
But I get ahead of myself. As I mentioned yesterday (see Growing Up), the teenager is now driving. This trip with Nan— because of course she said yes she’d come— would be her first trip with the teen behind the wheel.
Yesterday, we not only drove several highways but I took her to Wendy’s to try the drive-through. She aced that.
We set a rendezvous time with Nan for 10 a.m. and head to the car with a sneak peak at the garden. My fancy little imported peppers have started to grow, and the massive pumpkin vine that originated in my compost heap has started to yield pumpkins not on the ground but on my fence.
Petco passed without incident and Grocery Outlet had minimum disruption as well. But the teenager found Maple Doughnuts (as a brand name) in an unlabeled decadent 12 pack that weighed at least four pounds for $1.99.
“Quality you can see since 1946,” I chuckled while reading that to Nan.
The plan quickly morphed into a trip for coffee at Dunkin’ and doughnuts from Grocery Outlet. The teenager helped us load up the car and she headed to the Dollar Tree and we contemplated beverages.
Except McDonald’s was closer and cheaper. By the time the teen returned we were still deciding because I had a coupon for “buy one milkshake and get one for a penny.” But we had doughnuts.
Nan wanted a chocolate shake but protested that she was pretty sure drinking milkshakes before 11 a.m. was frowned upon, in the same manner as day drinking.
I assured her it would be 11 by the time we received the milkshakes.
So I ordered one small chocolate and one medium strawberry milkshake and one large Diet Coke.
One of us had to pretend to be sensible.
The drive thru is ridiculous. But that’s how it is now. The line at the McDonald’s is like a trip to the DMV whereas getting your learner’s permit at the DMV is relatively instantaneous. Another Covid-19 reality.
11 a.m. — to the minute— we receive the shakes. Nan and the teenager split a chocolate doughnut. I eat a cake doughnut with icing and crystallized sugar. And then a glazed donut with chocolate icing and a thick layer of maple icing.
A relaxed and joyful start to a sweet Saturday morning.
Sometimes I am reminded of my age— when I think of those summers of my girlhood circa the 1980s, when Pennsylvania experienced temperatures that averaged in the high seventies/low eighties and for about 2 weeks every August a heat wave of around 85 degrees.
It also snowed a lot more, and I can’t say I miss that.
Now I won’t be naive enough to suggest this pandemic has been fun. Some people have gotten seriously ill, others have died. Luckily in my circle, those who contracted Covid-19 survived and none ended up in the hospital.
But as I said in the beginning of the pandemic, the Coronavirus has forced us to look at our health system, our purchasing habits, our supply chains, what we need and what we don’t. I have found a more relaxed pace of life, and while I have lost my job, I have found some inner truths that bring me hope. Perhaps that is where my naïveté lies.
Yesterday, I had a business meeting with my first client as a partner in Thrive Public Relations. Thrive is the brainchild of a friend— who has been searching for someone with media, print and editorial experience to complement his digital marketing, strategy and networking expertise. I have agreed to help him, and hopefully this will lead to some paying work that could help keep me afloat and allow me to rebuild my career portfolio.
I spent much of the last year as a grant writer, and would love to highlight some current public relations work to augment my grant writing potential.
So I was asked to attend a business lunch at Sogo Asian Fusion yesterday in one of my favorite environs, downtown Easton. I thoroughly enjoyed, despite the 95 degree heat, dining on the patio. It felt lovely to build an outfit, put on make up and head into the world.
Then later that evening, my propensity for stress-related binge-eating led to me eating most of a jar of “trail mix” — I put that in quotes because it had walnuts and almonds but was mostly butterscotch and white chocolate chips— that my blind friend Nancy gave me for Christmas. I had it on my desk at work and it was one of my possessions that Mr. Accordion drove to my house.
And then my daughter cornered me. She started reciting old bits from Brian Regan, one of my favorite comedians (from the golden age of the early 1990s, before I graduated high school and Nirvana changed the world).
Finally she got tired of her delivery falling flat and we spent an hour watching Brian Regan clips from YouTube on my phone. I grabbed a Diet Coke and finished the rest of the vanilla vodka from County Seat Spirits.
The teenager’s father, my husband of 20-years whom I separated from last summer, does not like stand-up comedy. But a good stand-up comic (like Regan, or Trevor Noah, or for those who have thicker skin and/or less sensitivities Denis Leary and George Carlin), can lift my darkest spirits. So I love the fact that our daughter inherited my taste in comedy.
And when I got up this morning, as mundane life started to overwhelm me with chores and commitments, Nan called.
The Mighty.com had published her piece on our summer picnic and shared it with Yahoo News. It features me, and the teenager, so I got to enjoy reading about my life.
I found out today that my blind friend Nan likes horseradish, would like to try Fireball whiskey and has never had a margarita.
Today, as it is the start of weekend and expected to be the hottest day of the week, Nan and I planned to head to Park Avenue Market to use some hoagie coupons from The Teenager’s marching band fundraiser.
But Nan hadn’t listened to the rest of my message— she was already distracted by thoughts of cucumber salad.
So we’re standing at the deli counter and I order a 10” Lebanon bologna hoagie with bacon lover’s cheese and lettuce, tomato and pickles for the teenager and I to share. And I order Nan’s turkey hoagie with bacon lover’s cheese, mayo, lettuce and onion.
We’re scoping out the salads and I ask her if she planned to take me up on my offer of coming over to eat our sandwiches together and mix up the apple pie cocktail from the ingredients I ordered from County Seat Spirits.
The teenager always likes to get one of the massive deli pickles. So as Nan was realizing we were about to have way more of an adventure than a simple trip to the grocery store, the teenager is pointing out to me that one giant pickle is 99 cents whereas two are $1.69.
Now no one needs two giant pickles.
But I say yes, get two.
She turns 16 Tuesday, I can’t deny her pickles.
So Nan excitedly accepts my offer to stay for dinner and promptly tells me that we need to buy apple juice.
While we wait for our deli orders— summer bean salad and cucumber salad for Nan and slab bacon and liverwurst for me—Nan and I explored the $1 bags of chips.
Apparently Nan loves horseradish so we picked up the horseradish cheddar potato chips for us and Jalapeño Popper Herr’s cheese puffs.
The teenager also wanted tuna salad, so I bought some celery and tuna.
And me, being me, I bought a cow tale and a coconut candy watermelon slice. You gotta have dessert.
We unpack the sandwiches and chips on my dining room table, and the chips were just like horseradish, some bites were just right and some the fumes went straight up your nose.
And then, we started mixing.
I get the vanilla vodka, cinnamon vodka, wine glasses, shot glasses, trays of ice and a cocktail shaker.
Nan is impressed that I have a cocktail shaker.
We pass the bottles around so everyone can smell the vodka. I usually hate vodka. This vodka is distilled from cane sugar and impresses me. The cinnamon vodka smells like Christmas.
2 ounces vanilla vodka
2 ounces cinnamon vodka
4 ounces apple juice
I add two more ounces of apple juice to the cocktail shaker. Nan approves.
I am merely tasting as someone has to drive Nan home.
I slice the candy.
Nan has never had a cow tail before.
The teenager tastes the alcoholic beverages and approves. We have a discussion about her 21st birthday.
Nan and I plot a trip to the liquor store and mixing Fireball with diet ginger ale.
I mix a batch of the cocktail which I put in a quart mason jar with a plastic screw lid so Nan can keep it in her fridge.
I drove Nan home as the rain started to fall. I had slipped a cocktail into the freezer for myself. This is good vodka.
County Seat Spirits (they have a really yummy Instagram account) has been tempting me with their exotic to go cocktails for quite some time.
Lavender Lemonade with Gin.
Some orange drink called a white bronco.
Apple Pie cocktail.
So I splurged this morning and I ordered the 4-pack of the lavender and the hibiscus— two of my favorite flavors. I ordered a single serve watermelon margarita and a single serve white bronco.
I called up my blind friend Nan as I suspected the pandemic had made getting out of the house for social visit more unlikely. I asked her if she wanted to come over for cocktails and my Asian fusion cuisine.
Nan rarely refuses my adventures.
Nan joins me to run down to County Seat at the Silk Milk. I’ve ordered curbside pick up.
Then we stopped and put gas in the car.
Once we arrived at my house, the teenager put the drinks in the fridge and we put out some nuts and cranberry cheddar (read more about the cranberry cheddar here: Cranberry Cheddar Review) to munch on.
Now Nan, though blind, loves to watch me cook. I poured her a glass of my mint green tea and she enjoyed my narration.
I was making spring rolls/egg rolls. First I showed Nan the wrappers and explained how I mixed the filling.
Low sodium soy sauce
Canned white chicken meat
I let Nan smell the smoked paprika, the ras-el-hanout and the purple peppercorns.
I warmed my big cast iron skillet with coconut oil and sesame oil.
I stuffed, rolled, and sealed the wonton wrappers and fried them. I garnished with egg drop ramen noodles in a mild coconut curry sauce with a side of Korean barbecue pork jerky. (This was the jerky: Korean BBQ pork jerky.)
After some scrumptious egg rolls, we broke out the ‘lemonade.’
The gin made it super refreshing.
The teenager decided to make edible cookie dough. She forget most of the flour in the first batch, but Nan and I loved it. We dubbed it “chocolate chip cookie sauce.”
Nan tried the hibiscus drink. It was much heavier than the gin drink.
Still good, but the gin really tasted good on a lovely sunny summer day.
And the mailman came while I was driving Nan home— I got an Ipsy bag and the teenager got a rather unusual letter. But that’s for my next post.
I mentioned to my blind friend Nan, whom I help with typing and submissions in her writing and poetry career, that this pandemic was an opportunity for her to write about maintaining her independence without family.
We typed the piece last night, and in the quickest acceptance/publication sequence ever, The Mighty had it posted within 8 hours.
Last night, I attended the audio-described performance of Tartuffe at DeSales University last night. The teenager and my blind friend, Nancy, accompanied me.
Act I Productions always does a fantastic job and at this point, I know the staff almost as well as Nancy. (I wrote more about this yesterday, Tartuffe tonight.)
I was technically an English Literature and Language major in college for my first bachelors degree, but probably three-quarters of my degree was actually theatre classes as “Doc” Jack Ramsey was my favorite professor and I was active in the theatre company. I was also technically a French minor, but I was only one class shy of a double major. About a decade after I graduated, I did take an additional French class at my alma mater (Moravian College) and several more at Lafayette College when I earned my second bachelors in International Affairs.
That’s a long-winded way to say I’m a huge nerd who has studied Moliere.
DeSales University has a great theatre department offering majors in various forms of performing arts, so their shows are always top notch.
They offer one performance of every major production as an audio described show for the visually impaired. As I mentioned in yesterday’s post, this is a great way to include everyone in theatre.
I also provided my companions with a mini-lesson in farce versus comedy, where farce is quicker paced, has more characters entering and exit, and includes more physical humor than mere comedy.
Additionally we discussed Moliere and 17th Century Drama in general. This particular play is almost 400-years-old. It tackles heavy themes, philosophizing about religion and God (or perhaps religion versus pure spiritual intentions), gullibility, and how to change someone’s mind when they can’t see the truth.
Moliere is only slightly more modern than Shakespeare and, and this is totally my opinion, I find the French drama more accessible, funnier and more sexually-charged than Shakespeare’s canon.
The basic premise, and one that angered the Roman Catholic Church, is that a wealthy man invites a beggar into his home. The beggar, Tartuffe, has demonstrated piety that has impressed the master of the house. Tartuffe then tries to win over the master’s goods and family, and almost succeeds. The family would have been left in ruins, if not for a convenient intervention of the king, which of course, was Moliere’s way of keeping in the good graces of the crown.
The production at DeSales included a brilliant set, the paint hues of the set walls shifted colors based at the lighting. They created the illusion of a huge estate house on a small stage with an amazing display of perspective. They designed a set with six doors, about twelve stairs and three levels in a comparatively small space.
I only noticed maybe two line mix-ups. Acting was solid. I’m starting to recognize some of the actors. I think the daughter and the stepmother might have been my favorite.
I thoroughly liked the translation. It maintained much of the original rhyme without sounding forced in English. And some of the word choice was very rich. I very much enjoyed the vocabulary.
The costumes deliberately code the characters. The daughter and her suitor, as young and naive lovers, wear pink and pale blue. The stepmother wears an elaborate gown of pale blue and a light turquoise. The father wears various shades of blue and purple, but the hot-headed son wears vivid orange.
The religious themes, and the theme of being suckered in and acting stupid, still hold true today. I feel like the American political climate also seems like a “Tartuffe” story.
I’m very excited about going to see Tartuffe at DeSales University tonight. They have a strong college theatre program. They offer a program for visually and hearing impaired theatre-goers so my teenager and I attend with our blind friend, Nancy.
The program is a great way to expand my daughter’s horizons as they select great plays and adapt the presentation for other-abled patrons.
For the blind attendees, the cast comes out to introduce themselves. The staff pass out props and discuss how the stage is set.
As someone with a theatre background, it’s an exciting way to connect the experience of the viewer with the technical and magical side of how theatre works.
Some of the shows we’ve seen there:
Arthur Miller’s The Crucible
Chekhov’s The Cherry Orchard
Tennessee William’s The Glass Menagerie
This morning, the teenager is with her dad and I’m doing some household chores. I took down my bedroom curtains and washed the windows. In a few minutes, I’ll be retrieving the curtains from the laundry and hanging them up to dry.
Today’s big adventure might be trimming Nala’s nails.