Somber thoughts on disability and reliability

So I had a somber thought this morning about disability…

How does disability color our view of the world, security and life?

Over the weekend, my daughter and I went to visit my dad, while my neighbor shopped at my step-mom’s store (The Flag Store, Rt 209, Sciota). My daughter and Dad were spying on me from the security camera.

“You know, Mom,” the teenager said, “Your CP is a lot more noticeable on video. Because when you look at you when you are with you, it’s just that you walk a little funky. But looking from the camera it’s obvious that bodies shouldn’t do that.”

My initial thought was relief because I thought everyone saw me as I appear on video.

It’s the whole reason I refused to allow anyone to video my wedding.

And smart phones weren’t a thing back then.

So today— while pondering recent stresses in my life— I had a sober thought.

Does disability teach you to rely on others and therefore make it easier to ask for help?

That’s how I see my friend, Nan. She’s been blind since birth. She never had children. She’s outlived her whole family. Yet, she has this amazing network of friends who are also helpers. And we all love her sense of humor, her adventurous spirit and of course her practical approach to everything.

But for me, disability has intensified my insecurities to the point where I think no one, and nothing, is reliable. I know there are a lot of other factors that contribute to that in my mind, but I wonder if my disability “tightens the screws.”

Because I can’t even rely on my body.

Will it be an easy walking day? Will I trip and fall? Will my S1 joint protest? Will aches and pains plague me? (Or will my allergies make me nuts as if I don’t have enough health issues?)

Just a somber thought.

Rainbow Mac and Cheese and my thoughts on privilege and racism

I am saddened that in the 21st century this nation has not made more progress into equality and basic needs for all people.

Having visited different countries in the industrialized and in the developing world, having studied the history of colonialism and prejudice in Francophone Africa, the basic reality that as humans we continue to judge each other and care for ourselves and our own whole ignoring the pain of our neighbors pains me.

I have studied France’s relationship with its colonial history and its institutionalized prejudice against Muslims as a critical theory model for what I see with American imperialism and what I see with our own world legacy of hatred.

Race always enters into these studies because the African American experience shares a lot of commonalities with the French of Muslim Descent community; neither population asked to be enslaved by an empire. Yet, both populations are now belittled and mistrusted by their historical populations.

And both populations are judged and denied opportunities based on their appearance, on something genetic.

It’s so sad.

It’s 2020, America. We have outdated social classes, corrupted government systems, unsustainable consumption, unattainable educational opportunities, a capitalistic drive that values the work over the person, and a healthcare system that threatens our financial wellbeing more than it helps.

So it’s hard.

And I am fortunate to be white. But I am a woman, and I am a woman with a disability, so I understand the lens of judgment. I live every day wondering if I will be judged inferior or incapable because I walk a little funny.

But at least I don’t have to live every day in fear that I may be perceived as dangerous, or manipulated into a situation where I am suddenly an enemy merely because of the color of my skin. I won’t be killed for being dark skinned and being in the wrong place at the wrong time.

Or near the wrong people.

It’s so sad that some of the best, most helpful people I know have to live in this reality.

That Black men have to swallow their fear.

That Black parents have to hope their sons come home.

That people with power

  • whether the power of law (the criminal justice system which favors the white),
  • the power of occupation and authority (police officers, prison guards),
  • the power of messaging (advertising, media, even entertainment)
  • or the power of mass control (our government and the systems perpetuated by it)

can continue this nonsense of us against them is a classic battle of the “haves” and the “have nots.” It’s really time you listened to your mama and started to share.

Anyway, on a much lighter note, I made macaroni and cheese for the teenager.

I used rigatoni and made a sauce of mostly cheddar and 1% milk, with a chunk of Monterey Jack and a chunk of dill havarti.

I put the rest of my fresh spinach in there, put some smoked paprika, purple peppercorns, and smoked provolone on top and it was amazing.

I called it rainbow macaroni and cheese which got me thinking of the larger racial and prejudice issues.

And that made me sad.

But I did have a very heartening conversation with the teenager today. She’s cleaning her room because, as she told me, she needs to get her act together to be able to help me more.

Tartuffe at DeSales

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.

To purchase tickets: DeSales Calendar: Tartuffe. Show runs next weekend as well.

Tartuffe tonight

Lots of Sunshine

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
  • Evita

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.

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.
  • Stamina and challenges

    My daughter has rediscovered her love of the treadmill.

    She has rekindled a dream of running in the spring with her very own dog by her side.

    “Hey, Mom,” she calls to me after an afternoon with her grandparents, “I want to go to the gym.”

    I don’t. But I’m stubborn and a lazy bodybuilding princess so I go. Because if she wants to go that’s a challenge to me.

    I like challenges.

    I even do the treadmill with her. I hate the treadmill. I hate the treadmill because with my cerebral palsy, the treadmill requires all my concentration.

    But today, as she did walk/run intervals on her treadmill, I had a realization.

    I’m not sure I know how to run.

    I set my treadmill to intervals, too. My intervals were 3.5 miles per hour and 4 miles per hour. But that difference was enough that I had to run on the higher setting. It was hard to stand upright, run, and not use my arms against the handles to keep my balance as I ran.

    That was interesting to learn.

    I’ve always wanted to run a 5k, and the last time I tried I did all my training and the actual race with a broken toe.

    So who knows.