So, if you’re a friend of mine or a regular here, you know that I have asked my employer, Stitch Fix, for a short-term disability/ FMLA leave to deal with my ruptured tendon (mallet or baseball finger) and its impact on my right hip.
This means I’ve made a commitment to work with my family doctor, my chiropractor (Nicole Jensen at Back in Line Chiropractic and Wellness Center) and Andrew, my personal trainer at Apex Training.
And to keep my hands warm and not use my finger.
Yesterday, I saw Nicole and we discussed the state of my body and the trade-off I seem to be making— working in the Bizzy Hizzy warehouse keeps me active but causes pain, but not being in a physical job makes me stiff and makes it difficult to move, even when I take the same amount of steps I do at work.
Andrew and I are working on strength, mobility, stability and range of motion.
I had lunch with my mother yesterday, who upon her return home had her dog pass away.
In the afternoon, I spoke with my disability claims examiner and gathered paperwork for her. My eligibility confirmation came through this morning, and I think the actual leave is just a matter of paperwork now.
But paperwork sure is sucking the life out of me right now.
So this morning when the weather looked sunny and conducive to a perfect spring day, Nan and I decided to surprise the teenager and retrieve her hearing aids from the ear doctor. Then, we could grab some cold beverages and visit Bethlehem’s Monocacy Park.
The park is quiet, easy to navigate and has a creek. The birds, geese and fishermen would offer entertainment for Nan, as between the water and the animals there would be nature to hear as well as see.
It was a fantastic way to bring some stress-free moments into running errands.
After a modified upper body workout with Andrew, Joan stopped by and brought me an early birthday gift from the residents of Plastiqueville.
The hat was not for me but for my mallet finger.
And for dinner, the teenager made Hungryroot meatballs and cauliflower linguine. We used ShopRite tomato and basil pasta sauce. It turned out so lovely I had to make a slice of butter bread to sop up the sauce.
Thursday is my Saturday for those who don’t know or can’t keep track of my schedule.
Since my schedule change— from second shift to day shift— I have met with my friend Nancy (poet and essayist and blind lady with a wicked sense of humor and simple approach to life’s joys) usually every other Thursday to work on her writing commitments.
Recent changes in her life have made that every Thursday now, as I help her with some errands, and then I changed trainers at the gym and the teenager now works out with us so Nan gets Thursday morning while the teen is at school.
It’s automatic in my brain. As automatic as my standing Friday morning chiropractor appointment.
But what happens when we get together is never ordinary. Or the same two weeks in a row.
Like today we were going to see if our local Family Dollar had the individual creamers she likes. Except they weren’t open. So we opted to go to ShopRite.
And somehow— I got turned about driving there and thought I was on the wrong road but I wasn’t. So we zigzagged all over the place and eventually I had to Google map the grocery store.
We finally made it to ShopRite and the first thing I saw was a single serve bottle of orange juice— which Nancy is always looking for.
Then I saw fried chicken, still warm out of the oven. $9 for eight pieces. I had to get it. And I knew damn well I’d probably end up eating in the car.
Nan and I went through the various salads and deli meats— I picked out some broccoli slaw and ultra sharp cheddar for Nan and some black pepper Cooper for myself.
And next we saw small partial loaves of rye bread in the bakery. And muffins.
And so it went.
We found the items we needed, items we didn’t and a slew of things that we want to buy in the future.
The cashier actually addressed Nancy and understood to speak so Nancy could locate her.
And then we were in my car eating warm fried chicken at 9:15 a.m. Nan hadn’t had fried chicken in ages, and she kept saying she didn’t want any. But I insisted and handed her a drumstick.
She said it was delicious and that she’d forgotten that she likes fried chicken. And I said I’d be good on the fried chicken front for probably at least six months if not a year.
And then she pulled wet naps out of her purse.
After retrieving Nan’s laundry and taking her groceries home, I brought Nan back to my house for chai and well, the plan was poetry. But we got sucked into NASA briefings (crew4 and Axiom) on YouTube.
Nan listened to the briefings and pet the dog while I cooked some random items for her to share with the teenager and I. Nan enjoys my cuisine so when she comes over I try to send her home with a meal.
Sometimes you need to have fried chicken with a friend, in the car, for breakfast.
I often hear people comment about my positive attitude and my ability not to be deterred or disheartened by challenges.
But to an extent, people with a congenital disability don’t have a choice.
In my experience, people with congenital physical disabilities who have the capacity to live independently in the world learn early in life that persistent complaining doesn’t change anything, that there are limits to what can be fixed, and that the only way to succeed in an ableist world is to prove that we can contribute and that we are worthy of space.
To do that, to push those messages and to push those behaviors into the world despite whatever pain or physical challenges face us, requires a lot of strength and energy.
So mood and attitude mean everything. Because if my psychological state fades into grouchy or sad or frustrated, my energy drops. My concentration dissipates. And it’s on the subconscious level.
And it takes more energy for a disabled person to navigate the world.
For instance, my blind friend Nancy doesn’t necessarily move from point A to point B in a straight line. Often, she is having a tactile interaction with her environment that requires extra steps and physical behaviors whether that be using her white cane, trailing a wall, or following the body movements of a sighted guide. Hell, if she’s with a sighted guide she can’t even determine her own walking speed. She has to match her companion.
But this also applies to me and my cerebral palsy. Because of lower limb spasticity, my leg muscles don’t relax. I have to concentrate on my body, my posture and my movements with every step. This is exhausting.
A 2010 study by Bell and Davies concluded, “that children with mild CP had a lower physical activity level and lower energy requirements than typically developing children. However, during walking the children with CP expended significantly more energy.”
And I honestly believe I that when my “good attitude” shifts into a darker place, I don’t have the energy for that level of focus and my body revolts.
This weekend was hectic and quiet at the same time.
Saturday Nan and I canned some corn relish/salsa with some farm fresh corn on the cob. My mother-in-law, having grown up on a farm, knows her corn and has a gift for picking delicious corn.
Nan, as a lifelong blind person, has a fascination with all things cooking. She always says that she doesn’t understand how people learn these things. I told her I don’t quite remember how I learned to can, though I do know I always had an interest in gardening and in preserving the rich variety of foods we have in this region.
But it was fun to see Nan respond to the tools involved in canning.
Yesterday, Marsand Minerva attended an adoption event with our cat rescue group Feline Urban Rescue and Rehab. Meanwhile, the teenager and I volunteered with the FURR kitten event and backpack distribution through the Verizon Store in Forks Township. Our foster Touch of Grey came from there. They actually have foster cats free roaming the store!
The teenager and I finally got our FURR t-shirts. I’m very excited. The teenager looks really good in hers.
Meanwhile, at home, our foster tripod Louise has been very cuddly and at my side relatively non-stop.
AndI finished the proof for Manipulations. The book designer (my partner Gayle) will check out the file tomorrow.
My friend Bill sent me the manuscript for his next book in the Kink Noir series, Bondage. I’ll start my review sometime this week.
And finally, I made a list of all the authors and books that I hope to publish via Parisian Phoenix.
I was shocked how many titles were on the list. I hope I have the resources and the marketing prowess to do these books justice.
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.
Second week of Band Camp for the teenager and somehow I not only volunteered to drive her and the marching baritone to the high school but I also conned my good friend Nan, my crazy blind compatriot, into breakfast before our regular work session.
So I got up at 7:10 a.m., after the teenager did all the work with the menagerie, slapped on some clothes, took my last antibiotic and headed out the door by 7:40 a.m.
The routine with Nan is simple, yet deliciously complex, I pick her up and we drive to a shady spot in the parking lot of her apartment building to peruse coupons and loyalty deals on the various apps.
Now, Nan loves chai. We both love food, the worse for our health, the better. Okay perhaps that is a joke. Maybe. It’s free coffee Monday at Dunkin. And we have coupons for $2 off a breakfast combo at Wendy’s.
I plot a plan.
I really want to try the chicken biscuit at Wendy’s. Nan and I know we love the seasoned breakfast potatoes at Wendy’s.
So, our first stop was Wendy’s. We ordered a chicken biscuit with honey butter combo, making the potatoes a medium (which honestly was too many potatoes even for the two of us) and an unsweetened iced tea. The bill was $3.70. I had $3 cash and Nan had the 70 cents.
Now, I know, that’s only breakfast for 1 person. We then headed to Dunkin for my free medium iced coffee and to see if they still have chai— you see they took it off the menu.
We got the iced tea in case Dunkin really didn’t have chai.
I used the Dunkin mobile app to order the 2 for $3 sausage-egg-and-cheese wraps because Nan likes them. They are easy to eat in the car. And then I could get my free coffee. So that was $3.18. We saved the last egg wrap for the teenager.
Then at the speaker of the drove-thru we asked if they still had the chai, and they did. We ordered a medium hot chai and a cup with ice so I could ice it for Nan. That cost $3.79, as they had to charge us for the second cup.
They total for all the food was about $11 and we had breakfast for three people.
I loved the chicken biscuit with honey butter.
Phase One of our morning complete. Nan and I returned to my house to submit some essays and strategize future creative endeavors.
And then our friend Joan joins us. Neither one of us has seen Joan in a decade. Joan is another wickedly smart and multi-talented woman, dabbling and exploring the so many ways to express the beauty of this world: short stories, photography and music.
Joan, Nan and I all met as members of the Greater Lehigh Valley Writers Group when the teenager was still “the baby.”
A lot of my good friends came from that group.
And Joan also brought the sweetest, ripest smelling melon I have held in my arms in months. Did she notice how much fresh fruit cup I ate in the hospital?
The teenager came home for lunch break (from band camp), Joan departed and we crated our three male fosters for neutering tonight. Except Zeus looks like a girl now.
Apollo and Hermes both still have infected eyes and coughs so we were told to bring Artemis instead since she was ready for a forever home.
I went into the teenager’s room and Hermes had escaped his crate!
I let Apollo out, and cleaned cat boxes while on hold with Capital One Auto Financing to finish my application to refinance the last 40 months of my auto loan and drop $50/month from my payment without extending the life of the loan. I owe $7,690 and some odd cents.
With my auto loan approved, I slipped sweet little Artemis into the crate. Remember if she charms you, you can apply to adopt her through Feline Urban Rescue and Rehab.
On the way to Artemis’ rendezvous point, I received a phone call from Capital Blue Cross, my medical insurer. This was my second medical phone call of the day as the hand specialist overseeing my case called me to request a follow-up even though my hospital discharge instructions said I only needed to see my family physician at Medical Associates of Bethlehem.
I have that appointment scheduled for Wednesday, and now the hand specialist for the following Monday. On the phone was my case manager from the insurance company. She sounded pleased that I was healing well and on top of everything. She will call again next Tuesday.
Upon delivering Artemis and retrieving the teenager, we came home and I finally had Brussel sprouts. When I was admitted to the hospital last week I had missed them by a couple hours as part of the Monday lunch special.
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.