Why I need my lucky shirt: a typical day when you’re eccentric and have cerebral palsy

The best stories start with “it began as a typical day,” but in this case it did not.

The teenager turned 16 on Tuesday and my employer had scheduled our annual meeting for Tuesday so I planned to take off today and tomorrow to celebrate with my offspring.

With Coronavirus changing everything I could have taken Monday and Tuesday instead.

Last night, I curled up in bed with a gin cocktail and watched some more of Harlan Coben’s: The Five on Netflix. (Mini review: my friend, brow maintenance person and nail tech Beth recommended the show—and I am enjoying what I feel is edgy cinematography, rapid paced story telling, complex writing, and realistically complicated and tragic characters. It’s like watching a comic book.)

So I got to bed later than I normally do and I slept a little better than I normally do. I fed the kittens, made coffee, started laundry and finagled a cake carrier into the dishwasher.

After a cup of my favorite Archer Farms Direct Trade Cafe Mosaica from Target on my breezy enclosed sun porch, I slapped some clothes on… and ended up trying to accessorize a basic outfit.

Which is funny because I was going to pick up Nan, who is blind and won’t see my efforts anyway.

And then I was surprised to find out that the teenager made me breakfast— a mini bagel with greens, cucumber and fresh bacon.

After we worked on some poetry, Nan and I went to Lidl. And I took her home.

When I arrived home, the teenager informed me that her plan for today involved not wearing pants. So after a brief respite, I went to Wendy’s for a Frosty-ccino.

That was when the real adventure began.

I decided to take Nala, my four-year-old Goffin’s cockatoo who joined the family in January. Now, recently we took Nala to Dunkin Donuts to try hash browns and that went well.

And this is how she did: Nala at Dunkin

And we had taken Misty, our kitten, to Wendy’s (Kitten at Wendy’s ) so why not a bird?

So I ordered my Frosty-ccino and a junior fry for my baby girl bird on the mobile app and got into the drive thru lane. And then I did what we all do in this day and age. I took a selfie.

That’s when I realized Nala had pooped on me in fear. And I had no wipes in the car. Green bird droppings now stained my white t-shirt and Nala was walking in the mess.

But everyone in the drive thru window loved her— three employees cooed at her from afar.

I pulled into a parking space and offered her a French fry and she was too scared to eat it. I drove her home, put the car in the garage, gathered the waste and the food and started up toward the house.

Now, the teenager’s father moved some heavy original doors from the house across the garage so he could use my great grandmother’s hutch in his apartment. He did this a couple week’s ago. The doors block a portion of the stairs.

I got tangled up on the stairs/with the doors and fell, to the left onto the doors to avoid smashing Nala who was on my right shoulder.

I almost spilled my coffee and French fries fluttered like hail.

But luckily Nala is a bird, and a forager, so she doesn’t mind a little dirt. I gather them all carefully and climb up from the floor, some contusions and cuts causing minor pain.

I bump the doors and they almost fall on me. This time the French fries scatter to the four winds.

I notice how much blood and dirt cover me and I head inside to discover Nala has pooped even more.

I set her down.

I remove my shirt. White tee shirt. Vivid blood. Green poop.

I wash up and count my blessings— I was very close (too close) to breaking an arm.

I put on my lucky shirt once I cleaned up.

Addendum: I posted this link on my LinkedIn profile and wrote this introduction as to why I felt this piece was important especially as part of a discourse on social justice.

I don’t like to admit I have a disability— #cerebralpalsy. But it’s important to note that with all the stereotypes and institutionalized ideas people have about “others,” whether other cultures, races, religions, sexualities, identities, educational or social class (the list goes on and on), for those of us who have tried to “pass” as “normal” or “mainstream,” our experience is difficult. As all life is difficult to one degree or another. But if you are obviously “different” and you can’t “pass,” those notions of who you are based on quick judgments can be catastrophic. Or lead to people doing harm to you or someone you love. #blacklivesmatter

In that context, allow me to share with you what a typical day looks like for me. Warning— I end up bleeding by the end of it. Different isn’t inferior. Or threatening.

Highmark Walk for a Healthy Community ProJeCt 2020

On Saturday morning, the teenager and I went down to Easton cemetery to support the Palmer Kiwanis team as they participated in the Highmark Walk for a Healthy Community to support my employer, ProJeCt of Easton.

For more on that adventure, click here: Cruising the Cemetary with the Palmer Kiwanis

Today, I took a slightly elongated lunch break to take my team to the Karl Stirner Arts Trail. We started at the Silk Mill.

Me and My Team
Me, Buddy Eddy (dog of Team Member Sarah), the teenager and my good friend Gayle who writes a blog Fat Girl Walking

We headed down the trail and enjoyed the various art, the breezy trail, and the picturesque creek —all on the way to the dog park.

And then to end the outing, we let Buddy play and we got ice cream at Ow Wow Cow.

To register a team or donate to my team: Highmark Walk

For Gayle’s blog entry visit: Fat Girl Walking

Our previous visit to the arts trail: A walk on the Arts Trail

Cruising the Cemetery with Palmer Kiwanis

This morning I forced the Teenager out of bed, bribing her with the prospect of a dog (which happened to be a Newfoundland) and a doughnut (from Easton Baking.)

The Highmark Walk for a Healthy Community has gone virtual this year and typically we raise almost $10,000 at the office for our nonprofit. The Palmer Kiwanis are our largest/most lucrative fundraising team. They are organized by Debbie Ashton-Chase, a ProJeCt board member and one of the lovely people who own and operate the Ashton Funeral Home.

Today, on this lovely summer solstice, the Palmer Kiwanis hosted their version of the Highmark Walk at the Easton Cemetery.

At the Chapel

The weather held out and the group was jovial. They cemetery provided historical guide books which made my history nerd self very happy.

A Foggy Itch

This post is about some some difficulties…

Nothing serious. The day-to-day realities of life.

As I mentioned in an earlier post, the teenager had some medical issues. I have a dental appointment for an adjustment to my crown that was a mild nightmare before the Coronavirus pandemic. That’s on the 17th.

My favorite kitten got out and was missing for 24 hours this week. Thanks to all my neighbors who offered to help or kept and eye out for Fog.

So his brother, Misty, and I went walking in case Fog was afraid to come home.

Fog found his way home on his own, as cats often do. But he no longer had a collar.

In Nala news, (for those that don’t know, she’s my four-year-old Goffin’s cockatoo who joined our family in January) she has stopped plucking and has started barbering. This means she was pulling out her feathers, which, like with a teenager who “cuts,” releases endorphins that soothe. But barbering is the habit of eating the feathers but not removing them.

I hope this is a sign of progress.

This morning, the teenager and I went to Petco to get Fog a new collar (and we made sure all critters had tags with their name, address and phone—except Opie who eats his collar and since he’s microchipped AND is an amputee, we hope the neighborhood would “know” he belongs to us. He does have a tag, he just refuses to keep it on).

And we dognapped the neighbor’s sassy Maltese-Yorky for the day.

Lastly, I’m still struggling with some rather difficult itching. It’s a stress thing. The heat, stress, and my already overactive immune system (due to a myriad of pollen allergies and history of contact dermatitis) is prompting random hives. One or two, here or there, which despite daily antihistamines is getting worse not better.

Once a hive pops up, if I as much as touch it, it will stay and itch for days. I have some that won’t go on my belly, arms and butt right now. My thighs come and go.

So I post this things just to remind every one that despite what perfection people post to the internet, there are always struggles we all face, small and large.

The generic weekly update in the midst of (much needed) George Floyd inspired social unrest and dialogue

It is 8:30 a.m.

Saturday morning.

The house remains still and peaceful except for the whir of fans and the occasional vocalization of a kitten, probably Misty (Mistofelees) looking for his brother, Fog. He’s distraught because I almost closed his tail in the door.

Several times today I have paused and interrupted my normal routine— to text a friend, have a Twitter conversation, drink coffee on the couch instead of in my bedroom with Nala, my Goffin’s cockatoo.

One voice in the back of my head says, “You slept in, so now you’re an hour behind. You need to start that laundry and get it on the line, and that includes stripping your bed, and probably the cover on your weighted blanket. Just about every floor in the house needs to be washed with Pine Sol too. And the teenager never cleaned the cat boxes yesterday like you asked her to.”

Man, it’s exhausting just listening to that voice.

And already this morning I managed to stab myself.

I have this very basic practical set of Chicago Cutlery knives that for the first 20 years I never put in the dishwasher. Somehow, in the last day or two since I did my traditional hand wash dishes, every knife from that set is dirty. Six steak knives, the mini cleaver, the paring knife, the tomato knife, the kitchen scissors, all of them.

And last night, after a long work week where I never quite knew if I would ever receive the respect I deserve in the midst of some major ordeals, I just threw every knife in the silverware basket. Point up. The way every home ec and kitchen safety teacher tells you never to do.

I even looked in the dishwasher and chastised myself and said I should stop being super lazy and reload the top shelf so I could at least use that plastic flap that holds the knives.

But I didn’t.

Because this week brought me to new places. Another grant came back with with the largest award we ever received from that funder. Our Pennsylvania county finally went yellow. The primary happened.

But just like at work where I often feel like my voice is not heard and my experience and work style is not respected nor appreciated for what I can contribute, everything seems to stay the same.

George Floyd is still dead.

The two party system defends only the elite and anyone outside of that elite will always be marginalized.

So I slammed my dishwasher door and ran it not only with my “good” knives inside but also with them point side up.

And somehow, when reaching for a clean coffee mug that I never put on the bottom shelf but I did this time, I gave myself a superficial stab wound in the middle of my palm.

Probably because I was distracted by a long list of housework and not staying present in the moment.

This is not how people should live.

I gaze out the front window (oh, damn, I need to trim the roses too). The birds chatter and chirp outside oblivious to how humans destroy each other and our shared habitat.

But Space X Dragon launched successfully. So we have reached phase 1 of our transition into the society we glimpsed in Wall*e.

Which coincidentally was the first movie the teenager ever saw in a theater. I believe she was 4, and I recollect that it was somewhere around this time (must google). She wore a cute dress. We saw the movie at Bethlehem’s Boyd Theater. I didn’t want her first movie to be in a modern boring theater.

She was transfixed.

So now it’s 9 a.m. and I think back to my transformative experiences this week.

  • I lost 4 pounds in the last day. (Amazing what happens when you resume drinking water, eating fruit instead of candy and chips, and stop eating half a pizza every four days.)
  • I started baby steps toward making my body work effectively again.
  • I filled out a self evaluation form at work, which I think fairly depicts my successes and my struggles. I was trying to be honest and transparent but I feel I will be viewed as scathing.
  • I had a good visit with my doctor, noting that my blood pressure is going down.
  • In conjunction with those previous two bullets, I video chatted with my therapist who specializes in work stress and it was an intense appointment. I was drained for the rest of the day and ate nothing but a handful of cashews until 5 p.m. That was my most recent bout of binging half a pizza and Little Caesar’s stuffed crazy bread. Which was a disappointment. Stuffed crazy bread tastes nothing like real crazy bread and the cheese inside was weird. The bread itself was soggy. The outside tasted like a soggy Olive Garden breadstick without the addictive outer coating and the inside was overloaded with a heavy but tasteless mozzarella.
  • I didn’t vote in the primary. I always vote. But I researched all the candidates and in the races where I wanted a voice there was no opposition. It bothers me deeply that I did not vote.

And George Floyd.

And the struggles of every “minority,” every person labeled for their skin color, their body shape or function, their religion, their choice of dress, their economic status, their sexuality, their gender, their resistance to be the status quo, their inability to be the same, the non-conformists, the thinkers, the doers.

George Floyd is dead.

Let me make a promise

I saw a picture of myself from 4 years ago, at least ten pounds lighter. I think I’ve been in a bit of denial.

That woman didn’t have a loose belly like might. That woman had some gorgeous abs.

But this girl today has some other awesome features— like a tight and curvy backside.

But with Covid-19, my pants won’t button and my muffin top is bulging into a Bundt cake.

I’m eating too many refined white carbohydrates and indulging in too many pizzas. I never realized how much my pathetic efforts at going to the gym made a difference.

Yesterday I tried to eat better. I have stopped snacking. I’ve tried to move more.

But yet I gained another pound.

Even more than weight, my stamina/ endurance has decreased. My butt hurts from all the sitting. I don’t even understand how I sit so much. Going to the office makes that much difference?

So today the teenager and I got out the Instafitness app and did an easy ab routine. I make mine harder by doing two sets of every exercise.

I was sweating by the end, but my S1 joint didn’t feel nearly as sore as it did after my evening walk.

I went to the Grocery Outlet and bought lots of weird things I will share with you.

Potential breakfast: cheddar cheese with cranberries in it, fig-black sesame chia crackers and maple glazed pecans.

This time I have to get my good habits back.

Five years ago I lost thirty pounds in six weeks and gained a ton of muscle. But I got too thin.

I’m not up to the original weight that scared me thin then. But I’m too close for comfort.

So listen up self, I want you to promise:

  • I will make better food choices.
  • I will eat more fruits and vegetables.
  • I will exercise daily.
  • I will not mindlessly snack.
  • I will drink more water.

And I want you to try very hard to:

  • In addition to your body weight exercises, start lifting again.
  • Consider running or boxing with the teen for cardio.
  • Hit 10,000 steps a day. You used to walk 15,000 steps a day.
  • Pizza goal—once a month
  • Alcohol goal—once a month
  • Sleep well
  • Drink herbal tea before bed
  • Moisturize
  • Floss

Health & blood pressure update

Nala, my Goffin’s cockatoo, and I are sharing a juicy bowl of watermelon.

I went to the doctor today for a follow up on my high blood pressure. My original appointment was April 1, but the pandemic moved it to today.

As they directed me last week, I arrived in the parking lot prepared to call them and wait in my car. (See Medicine in the time of Covid for the full prep phone call, which I also submitted to the Mighty and should be available on their platform soon.)

But they called me as soon as I pulled into the parking lot!

The nurse came out for me and brought me into the office vestibule where she took my temperature. From there, we went into the lobby where she had me step onto the scale. Imagine my surprise when I saw I was lighter at the doctor’s office than at home.

I had horrible, emotional nightmares last night and they left me shaken this morning. I had a raging headache, which might have been dehydration but it could have been stress as I knew I had to do a self-evaluation at work and my boss only gave me 24 hours to do it.

I thought my blood pressure would be awful. My pulse was racing. I felt it.

But even that riled up, my blood pressure had dropped 10 points! Even with the work stress growing, the Coronavirus and all the other issue’s on my plate, my blood pressure went down.

I meant to ask her to take it again before I left because I bet “the good news” made it go down even more.

And according to them, I gained less than 2 pounds during Covid. My records and my clothes disagree.

But I felt really good after that visit.

Medicine in the time of Covid

I slept this morning until 8:30.

I never do that. I think the animals had started a plan as to what to do if I were dead. The three-legged cat had slowly but surely opened my bedroom door. The kittens came in and hung out in my open windows.

Last night, the teenager and I watched most of the documentary A K A Jane Roe on Hulu. The format distressed the teen as they presented Norma McCorvey’s story in her words and in the words of others (including the reverend who might be seen as her biggest adversary in the beginning)—including historical footage.

The teen found it disjointed and hard to ascertain what was “truth,” so I said with a sigh that I guess I don’t have to worry about her becoming a journalist.

We had a fantastic discussion about “when life begins,” eugenics, abortion and patriarchy and then had a little passive-aggressive disagreement about what happened to the potato chips. (Two binge eaters in the house = bad news. By the way, I’ve lost a pound. Not enough, but it’s a great start.)

This morning, the doctor’s office called me about my blood pressure check scheduled for Tuesday. They wanted to know if I still planned on coming. I said it didn’t matter to me as they had already refilled my medication.

It’s a shame my appointment isn’t today as then they might have gotten a good blood pressure reading.

And they won’t be happy about the weight I’ve gained.

So they asked me every question under the sun about my health and possibility for Covid-19 symptoms. They confirmed my medical insurance. Asked if I had a mask and if I’d be coming alone. They asked what I drive.

I am to complete my check-in online.

They will call Monday afternoon to confirm my medications.

On Tuesday when I arrive I am to call from my car. The physician’s assistant will escort me into the office when they are ready for me.

Medicine in the era of Covid-19.

Our own Walking Purchase: Forest Bathing

I asked Gayle if she could think of an outdoor, quarantine-appropriate activity for the three of us— herself, me and the teenager.

She suggesting “forest-bathing” at Salisbury Township’s Walking Purchase Park.

According to Gayle’s research, forest-bathing is:

Forest bathing is the practice of slowly moving they the woods involving all senses. As you gently walk you breath deeply and it reduces stress, increase positive thinking, and energy levels.

Why not?

The park features several trails. We walked part of the yellow “Sweet Delight” trail and part of the red “Lenni” trail.

Gayle was disappointed we only walked about 2.5 miles, but I think the last mile was straight up hill— about 18 flights of stairs according to the Apple Health app.

Forest-bathing yielded a very Thoreau sounding journal entry for me.

I am surrounded by unblooming May flowers hearing the buzz of gnats as they swarm into my ears. There are birds chattering like squealing monkeys. The train hollers in the distance: a choo-choo bird.

A breeze cascades across the woods, a floral wave of rain drops and sunlight. I revel in the stillness.

The woods around me has a conversation, but as a human, can I learn the language?

When we got home, the teenager baked her grandmother’s famous corn bake— a recipe I believe she got in high school home ec classes. So it’s got to be 50+ years old.

Unwinding (vacation day 4, grilling day 2)

I woke today with no clear idea of what I wanted to achieve today except that I promised my teenager that we could go to Lidl and get supplies to grill again.

I even called my blind friend Nan (who’s now on twitter and just published a NASA poem as a tweet) and got her shopping list.

  • Macaroni salad
  • Peanut butter cookies
  • Riced cauliflower
  • Ice cream

I got up and fed the menagerie. One quietly sad little leftover tidbit of having formerly feral kittens is that sometimes they really do eat anything.

Fog, who was on his own a month longer than his brother Misty (Mistofelees), tends to eat the cockatoo’s kibble.

But I do feed them— as I grind my whole bean espresso blend and feed it into my little espresso machine.

This morning I started laundry, washed the bathroom floor and reassembled it now that it’s been thoroughly scrubbed. I had my last birthday cupcake for breakfast.

I saw a got the last of my anticipated packages, a shirt and necklace from Doll’s Kill. (Unboxing here: My last birthday package.)

I also got two pairs of slacks and a purple tunic from White House Black Market. I thought the necklace would look amazing with the tunic. (Another unboxing here: New Pants)

My Goffin’s cockatoo, Nala, had her morning talking session and woke the teenager up at 11 a.m.

The teenager and I went to Lidl and the Dollar Tree. Our finds at Lidl included super cheap scrapple and super cheap hot dogs and super cheap maple breakfast sausages. We got two bags of instant light charcoal. Dill pickle pita chips. Some varieties of veggie burgers. Provolone because it was on sale and the teenager adores provolone. The teenager even got break and bake chocolate chip cookies to make in her father’s new toaster oven. (His apartment does not have a stove/oven.)

At the Dollar Tree, I got tuna. A vase because for the life of me I can’t find the one I made in college that I use to display my roses. Frozen appetizers. A can of corn so we can make my mother-in-law’s corn bake. A can of Chef Boyardee Beef Ravioli because it might be the second time the teenager ever had it. Some grill utensils. Matches. And Ajax. Because the teenager wanted Comet for cleaning but the Dollar Store only had Ajax. And instant decaf coffee. Because Lidl didn’t have any decaf coffee and I need to detox.

Nala got really hot this afternoon and started swimming in her water bowl.

The teenager started the grill again. This time we were more determined than ever to succeed. Read about last night’s attempt here: Yesterday’s BBQ

We even invited her dad for dinner. And do you know what? Those cheap hot dogs were really good.

And I had a library board meeting at 7 p.m., so I poured a Diet Coke and mango nectar.

I can feel my tension fade away and it feels delightful. I ate well today, though I’m hungry now. I even had a ton of fruit. A serving of cantaloupe. An apple made in the grill like at Girl Scout camp. And probably 8 pieces of watermelon.