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.

TV Psychotherapy

My mind has experienced a lot of shifts recently. I have changed the way I communicate thanks to some insights of the teenager, some stress at work, and a variety of great support from friends and family.

In the midst of all this, there is the Coronavirus pandemic which allows a lot of introspection for those of us who try to be self-aware.

I’m not a big television watcher. I grew up in a rural setting in a valley by the river where we had poor television reception. We didn’t receive access to cable until I was a teenager.

When I left home, my husband and I chose not to pay for cable (and this was Netflix first started and they mailed you discs and prepaid envelopes— streaming was not a thing).

So, Hulu and Netflix on my iPad have allowed me to explore decades of pop culture. And I realize that many of these reality television programs can offer a window as to how we all face our struggles and build our relationships.

While I originally started watching Gordon Ramsay, it was because I love food and he had a reputation that I wanted to understand. I also like big, athletic guys with bad attitudes and exotic accents.

But the more I watched— whether it was Hell’s Kitchen, Kitchen Nightmares, Hotel Hell or other Ramsay programs— I saw people of all backgrounds reaching toward goals of increased knowledge and skills, wanting a better life, and working to impress not only a mentor but a larger-than-life icon, a modern God.

And Ramsay pulls talent out of people and sees something in people. It’s amazing to watch.

Inspiring.

Shows like 90-Day Fiancé show how desperately people want to be loved and the lengths they will go to— whether in hope of love or acceptance or, again, that desire for a better life or a Green card.

Now, I’m watching Hoarders. I watched the first episode because I’ve been in a hoarded house and it is mind-blowing. I wanted to understand.

I have learned how our upbringings and traumas intersect and influence how we communicate and relate. That stuff, shopping, accumulating, giving up and other verbs… it’s a manifestation of our emotional walls. I would classify My Secret Addiction (or is it My Unusual Addiction?) in the same realm—how to cope.

And then you take a show like Transitions, where people explore their gender identity, and I suddenly see how much of a struggle they have to live as the person they really are versus the person they feel forced to be by family and society. That’s strength.

And why you really want a good outlook, and to see hope, enthusiasm and change, you watch Queer Eye.

Tooth Update: ten years of dental drama

Let me pour myself a cup of coffee as I digest the chicken burger with avocado I just inhaled. I will tell you a story as I sit and reflect on one of life’s foremost pleasures: enjoying a mediocre meal that tastes like the most amazing food ever specifically because you had a dental emergency and now your mouth is fixed.

That is a run-on sentence but you can deal with it.

Sidewalk splat

It was May 2011. The teenager was in first grade and I was working very part-time at Target and working on my second bachelors degree at Lafayette College.

I walked the child and a neighbor to the elementary school every day. This day was no exception.

I was almost home. But just like the opening sequence in Ryan O’Connell’s Netflix comedy “Special,” I fell.

O’Connell and I share similar experiences with our cerebral palsy. (For more on that, see my article from The Mighty, Grit and getting published on The Mighty.)

Ninety-nine times out of 100, I get up, brush myself off and keep going perhaps with a scratch or a scraped knee.

This day, I faltered on a bad patch of sidewalk, caught my balance, then stepped forward only to unexpectedly lose my balance again. And I didn’t have a chance to put out my hands or collapse into the fall.

My glasses went flying. My phone also sailed away. My chin was the only thing that hit the sidewalk. This was both lucky and unfortunate.

I stood, gathered my things. I knew my chin was bleeding but when I put my glasses on I noticed something:

There was a tooth on the ground.

I was about four houses away from my domicile. But in my shock, I had no recollection where the accident occurred. I called my husband. He demanded I go to the dentist.

At the dentist, the used butterfly bandaids to hold together my chin as they X-rayed me. They encouraged me to head to the ER next. I ended up with two stitches. (Both the ER and the dentist were utterly impressed I hadn’t broken my jaw.)

Dr. Lorri Tomko

Now, my dentist often has other dentists working in her practice. This particular day I had the true, true pleasure of working with Dr. Lorri Tomko. She went CSI on my mouth explaining what had happened.

When I fell, my bottom teeth and top teeth smashed together and damaged each other. I damaged most of my mouth that day. For the next few years, I had a lot of dental work.

Some of it was hard for me and for Dr. Tomko, but she was dedicated and gentle and it helped my anxiety that she walked me through everything that was going to happen.

She’s my favorite dentist ever.

The tooth I spit out was only half a tooth. It was one of the few cavities I had had and the tooth broke around the filling. A really ancient and in my opinion terrible oral surgeon pulled it, reciting the tooth number the entire time. (#29)

I can’t prove it, but I blame him for a bad mouth infection I got upon receiving an implant. He had missed a piece of the original tooth.

Last night’s broken crown

So last night, I spit out a crown while eating candy from my daughter’s recent Universal Yums box. I was frantic when I saw it was my crown and not my implant crown.

That original crown… Dr. Tomko couldn’t get the tooth to numb and she used laughing gas on me and said something about never wanting to work on that tooth ever again. And that we both needed a glass of wine.

I called her office today, but she doesn’t take me insurance and she couldn’t see me until Tuesday.

My normal dentist got me in at 3 pm, but at this point my remaining tooth is stabbing my tongue when I talk, eat or drink.

My dentist could take the impressions and get the temporary crown on. Thank goodness, but my mouth didn’t want to cooperate. I couldn’t stop my gag reflex for the impressions then I wasn’t biting correctly.

Apparently I kept shifting my bite to the left to bite the stuff in my mouth.

You know what’s worse that doing something that triggers your gag reflex? Doing it seven times! No exaggeration. Seven.

And of course, payment was $394. Their regular price was $1250. But my insurance price was $750. But they would only pay 50 percent and I had a copay.

  • If I look at my American Express bill right now it includes (from the last month):
    • $500 for a diagnostic ultrasound for my breast
      $175 for radiology for that ultrasound
      $400 for the dentist
  • Ridiculous.
  • Go ahead, politicians of a certain type, telling me again that the system isn’t broken. Corporations run this country. And medical insurance is big business.
  • Grit and getting published on The Mighty

    I binge-watched Ryan O’Connell’s Special on Netflix and it resonated with me so much I wrote an essay about it for The Mighty.com, a social media platform for people with disabilities and their caretakers.

    I’ve been so stressed out at work I didn’t notice they published it two weeks ago and that it was also republished on Yahoo News: My piece on Yahoo News

    Today was a not a good day, but with my normal pluck and good attitude I tried. Sadly, I left work feeling like a disappointment and a failure. But I had a nice supper with a friend and my daughter.

    My daughter replaced my chipped phone screen protector so I’ll no longer get bits of glass in my fingers. I have a Bodygardz protector so I ordered a replacement. I can get 1 per year at $8.

    We went to the store for bagels and cream cheese and there wasn’t a bagel anywhere in the store.

    The teenager and I went to the gym. I fell in the parking lot, smashed my elbow and, if you hadn’t guessed it, chipped my new phone case and screen protector.

    I didn’t work out at the gym. Just cried in the locker room and came home.

    Because the stress of my job, coupled with the stress of running the household by myself for the last seven months, is taking a toll. My cerebral palsy is “getting worse.”

    My mind is strong, but my body is breaking.

    Christmas Eve 2019

    I started my Christmas Eve morning trying to make the house presentable for my mother’s Christmas visit, but I also treasured the silence and stillness of the house.

    The teen got up early and finished her advent calendar…

    The final window

    My mom came down around 10, and the teen and I had made Pillsbury cinnamon rolls and some fancy break-and-bake cookies.

    We exchanged presents and my mom left after about 45 minutes and took the teen to her father’s apartment. Apparently, he had intended to have my mom over for a tour and despite the fact that we’ve been separated six months she still hasn’t visited.

    My day was pretty quiet. I did some laundry and loaded the dishwasher and tried to unclog the bathtub drain. At 2 pm, I realized I hadn’t really eaten so I ordered Dominoes.

    I hung out with my three budgies (they do love to fly around my head) and watched two episodes of Jonathan Maberry’s graphic novel, now a series on Netflix: V Wars. I took a writing workshop with Jonathan more than a decade ago when he had just published his first (maybe two) novel(s).

    The teenager just read my signed copy of Ghost Road Blues for her independent reading in English. She didn’t enjoy it. She then purchased his later book, Rot and Ruin, and devoured the whole tome in two days.

    VWars definitely held my interest for the episodes I watched but I think I need to turn to something more uplifting for holiday viewing.

    The teenager is with her dad and paternal grandparents.

    She should be home soon. She wore her new dogs and cats in Christmas hats sweatshirt, complete with blinking lights. We opened that gift on Saturday when my friend and very talented nail tech Beth came over to see my tree and have some wine and cookies.

    The teen’s ugly Christmas sweater

    Holidays often bring a lot of anxiety for me, and this year has had its moments. But sometimes you just have to remember to be kind to yourself and do what seems right for you and your family.

    Initial thoughts on “I am not an easy man.”

    The other night I finally took the time to watch the French comedy I am Not an Easy Man on Netflix.

    I am writing now in a few stolen moments between my nail appointment and my father stopping by to deliver some wood to my daughter. These are my reflections three days later without notes.

    The basic premise is this: a single guy with a rich sexual history with women suddenly wakes up in a world where females are the dominant and stronger sex.

    My almost-fourteen-year-old daughter watched bits of the film with me and I think it made her look at gender roles and gender expectations in a new light.

    Women wore suits. Women initiated sex. Women went topless and didn’t shave.

    Men waxed. Men stayed home with the children. Men carried purses.

    Breasts became the power symbol.

    The script was funny, but seriously thought provoking. I hope to watch it again and provide a more thorough analysis.

    New Adventure: Reviewing Horror Movies with my Teen

    It’s probably been a decade since I met William Prystauk at an after-party of sorts when Kaylie Jones came to the Lehigh Valley to promote her memoir Lies My Mother Never Told Me. My attendance at that book signing was itself a convergence of factors, primarily two: my attraction to Paris and my experiences with parents dealing with alcoholism.

    The party in question was hosted by a former work colleague then involved in an MFA program as one of Ms. Jones’ students. She invited me to her home after the event and that’s where I met Bill, also in the same MFA program. And we discovered we had similar interests and were practically neighbors so somehow we ended up meeting for coffee.

    At some point in the last week or two, Bill suggested my teen daughter write for his web site, Crash Palace Productions, http://crashpalaceproductions.com/, reviewing horror movies. Except, I pointed out, that my daughter doesn’t watch horror movies due to bad memories of The Walking Dead.

    That request got me thinking and I proposed doing a joint review. Last night we watched Netflix’s I am the Pretty Thing that Lives in the House. And this morning, I wrote and submitted the review.

    My next hope is that my daughter will watch the 90s classic The Craft and examine whether it holds up with today’s generation. I might even consider that a project for today.