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.

Friday Adventure: Slateford Creek Falls

One of the women I went to school with took her kids to Slateford Creek Falls, a place about 5-6 miles from my childhood home. I have never been there. Her pictures left me captivated.

How could something so beautiful exist so close to my former home?

Gayle joined the teenager and I for a morning walk. We did a little web research— apparently not enough.

Gayle drove and I took her on a scenic detour to my childhood home between Tuscarora Inn and Driftstone Campground in Upper Mount Bethel Township.

We arrived at the main parking lot on National Park Drive in one of the first parks that make up Delaware Water Gap.

And we knew from our research that the falls weren’t by the main parking lot but we decided to follow the main trail anyway. Maybe we thought the falls would move just for us.

We were rewarded for our adventurous spirit by seeing two very large woodpeckers with vivid red heads.

Arrow Island Trail Head

Someone gave us helpful directions that the falls were across the street and by the “pull off” between the guard rails. I remembered seeing the pull off on the way in, and I was sure it wasn’t that far.

I was wrong. We followed the road, on foot, down the steep, windy road. And we almost made it, but we weren’t sure how far it was and wasn’t sure we could walk to the falls AND make it up the hill.

Gayle offered to get the car, which didn’t make much sense because Gayle doesn’t do well on hills. Her knees have aged faster than she has.

The teenager volunteered me to go get the car. I asked if she was coming too— she said no, that I would only slow her down. Apparently, the now-16-year-old can’t keep up with me on hills. And I have cerebral palsy!

So I hauled my butt up that hill, huffing and puffing. Gayle and The Teenager almost made it, too!

I didn’t move Gayle’s seat so I was sitting on the edge barely reaching the pedals and then I couldn’t get the doors to unlock but Gayle took over and saved the day.

And when we found the trail, it was intimidatingly vertical. I’ll let Gayle’s blog entry cover the specifics of the trail:

Click here for Gayle’s blog entry .

My Photos

The teenager got to play in the falls, and Gayle and I didn’t end up on the wrong side of gravity although Gayle did bump her head on that tree.

It occurred to me— as the teenager and I gathered slate for future spiritual purposes, climbed among the rocks and fallen trees in the middle of the creek, and enjoyed the peace of the rumbling water—that this moment was full of freedom, nature and life giving resources.

The stats on this hike weren’t accurately counted. The teen got 4 miles, I got 2.5 and Gayle’s numbers were different from those. I got credit for 3 flights of stairs, Gayle got 14.

And perhaps it was no coincidence that I had received notice that I am losing my job with the full moon and “Independence Day” approaching.

With this in mind, I arrived home in time to meet up with our favorite little dog, Sobaka, who is hanging out with us while her “mom” is at a picnic.

Sobaka laid at my feet while I did some public relations work for upcoming events hosted by Aspire to Autonomy, Inc.

I am constantly blessed to work with such a wide range of people with different outlooks and different strengths. I learn something from everyone of them— admiring one person’s brilliance, another’s kind heart, and yet another’s passion and willingness for boots-on-the-ground work.

It’s a lot to think about.

Maybe I’ll get out my tarot cards tomorrow.

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.

Realities of lemons and tandem bikes

Yes, I know the title is nonsense— but the world has turned a tad upside down as the world tends to do as having billions of people and billions of animals on a planet will erupt into some unexpected situations from time to time.

The teenager loves to eat lemons. I love to cook with lemons. For a while, especially when I first discovered Gaz Oakley the Avant Garde Vegan (Check him out on YouTube—amazing falafel, his own recipe for peri-peri sauce) I always kept fresh lemons in the house.

That was also about the time I would have lemon water first thing in the morning. The juice of half a lemon with tap water.

I did that again this morning. First time in probably a year. Or more.

Today was also the first time in a week I haven’t gained weight. The first month of this pandemic, I was eating better but stopped because… Easter… or so I claim. I am a jelly bean addict and once I start eating the jelly beans I launch onto a sugar and caffeine roller coaster.

This was breakfast. Not ALL of them.

So maybe this post should be called “bad habits.” I originally lost about 5 pounds due to stress in the beginning of the pandemic, but between beer, pizza, Easter candy, homemade cookies and triple jalapeño bacon cheeseburgers from Wendy’s they have found their way back.

But look— I got a salad

It’s been rough. More pressure than ever at work. A good friend walked away coldly without even saying goodbye. A work colleague who often made me smile left unexpectedly. Medical bills still coming in.

But in the end, I still feel inside these struggles help us grow and bring us to the next level— as another work colleague likes to say— we don’t age, we gain experience like in a video game. So I’m less than a month away from my 45th Level with the teenager two months away from Level 16 and a drivers license.

Designated Driver AND babysitter, mom friends out there!!!!

Yesterday was a sunny day amidst a forecast of rain. Last week the teenager did not complete her three weekly gym assignments and she told her teacher in her log that she “got lazy” and he wrote back that sometimes he gets lazy, too. This is a great lesson for our (older) kids in communication and work ethic. Those of you with younger kids, God Bless You and Keep You.

I would be screaming every day if the teenager were, say, six. Our brains are wired too differently.

But back to gym. We got out the tandem bike. (Yes, we have a bicycle built for two— it was a gift.) I wanted the teen to “win” gym this week. And she should get extra credit for captaining a bike with her mom, who has cerebral palsy and no real balance skills.

Then her dad came over and brought his famous hot buffalo chicken dip for dinner, at the teen’s request, and included beer for us grown-ups. And he even got on the bike! (He doesn’t ride bikes.)

I excused myself to work on some more chapters of Bill’s novel Debauchery (and reached the first sex scene— those characters are so in love it hurts). Please don’t be scared by the violence and BDSM in this novel/series. The real theme here is the beauty of acceptance no matter who you are.

And the first of several pet related packages came. So here is a Petco unboxing and some animal videos:

Petco unboxing
Nala eating pretzels with the teen

Let’s see what adventures today brings! Stay well, friends! Let’s crush this day!

Saturday rumination—how do I move forward with athletic aspirations?

I woke. My birds started chirping about 6:30 a.m. due to the light that creeps around the edges of my black-out curtains.

I had coffee, started some laundry and dishes and came up to clean the bird cages and touch up my room.

The lack of activity is causing more discomfort in my S1 joint. It makes me think about how my awkward gait from cerebral palsy might be destroying what fitness I have. For a while, I was quite athletic.

The issue is on my left side. It started when I started working more or less full time at my retail job which was a few months after I broke my ankle.

I wonder if I will ever be able to fulfill my dream of running a 5k or if my body just can’t handle it.

After I broke my hand, I started weight training to regain strength. I added cardio and walks of 2-4 miles a day (in addition to working on my feet/walking a mile an hour at the cafe) when my weight became an issue.

Life has changed— and my job leaves me sedentary, the gym is closed and I just don’t seem to have the energy to work out at home.

But before I started working so many hours, I was muscular and my back rarely hurt. Only twice a year or so when I “threw” my lower back out.

And sometimes I did that sneezing or standing up from a chair.

Just something to think about— how to rebuild a strong body from an aching one. Or do I attribute it to my age and move on…

Do I have high blood pressure?

As we age, it starts to feel like we all gain a plethora of medical conditions and for most of us they are connected.

Maybe that damage you did to your knees playing football impacts you a whole lot more than you ever imagined it would when you were 20.

Or, as my dad—now approaching 72—says,

“If I’d known I was going to live this long I would have taken better care of myself.”

(my dad)

I know I’m at a stressful point of life. Almost one year ago I left my job of almost ten years, I job where I was surrounded by dozens of other people everyday and working intimately with a close team. Some of them became good friends but there’s a phenomenon when you work retail. Those relationships fade once you’re “out.” And sure, I have friends outside of my former employer but some of these colleagues spent more time with me than my family.

Some close colleagues have gone on to better things. One I was very close to died of cancer. Another moved to Florida. Some just get harder to stay in touch with.

So that’s a change.

My husband moved out eight months ago. Eight months.

I got a promotion at my new job in late August, that’s six months ago. And I have no experience in my new job. That’s daunting.

When I went for my annual physical in late January, my physician was concerned about my blood pressure at 142/85. He told me to keep an eye on it and if it doesn’t go down to call him.

I called him. I’m working with a therapist to combat the stress. I mentioned to him that stress, to me, was different from anxiety. Anxiety comes when you are worried about the things that might happen. Stress is dealing with what is happening.

“What an interesting distinction,” he replied.

I am trying to do better about the gym, my diet, my rest and my frame of mind. I go see the nurse practitioner tomorrow.

My mother has been on 5 mg of the same blood pressure medicine for about 20 years.

And I know 142/85 is not really high, but I’ve learned from my chiropractor that high blood pressure will effect my balance issues from my cerebral palsy.

The stress dreams happen every night. The worst one— yet the one I feel has more meaning that the others—was “The Jar.”

I consider it a variation of the classic “buried alive” dream. I was sitting in a giant jar of nothing but black void. An ominous voice told me that the jar was a waiting room to house those people about to die, very temporarily as they passed on.

But I didn’t belong there as I wasn’t scheduled to die for another 40 years. But no one left the jar once you entered it. I was cursed to sit there in the empty, dark jar for 40 years.

Yes, I woke to my dark room fearful that I really was in a jar. As far as nightmares go, I’ve had much worse.

But it hangs with me. As important.

Maybe I need to embrace nothingness more.

Maybe I have a lot of life left to live and I need to be sure I live it.

Maybe I will die at 85.

We shall see.

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.
  • A chat with my Chiropractor

    When you have a condition like cerebral palsy, sometimes it’s difficult to determine what’s an average ache or pain, what’s normal for you, and what’s an actual problem worth seeking help for.

    I’m too tired today to rewrite that sentence so it doesn’t end in a preposition. Deal with it, grammar police.

    I’ve been falling a lot lately. It started before my annual physical, the one where my blood pressure was so high the doctor threatened to medicate me. I fell just walking down the street. I’d lose my balance on the stairs. On Sunday, I stumbled while doing laundry and managed to stab the ball of my foot with the corner of a concrete slab.

    Since I walk a little funny, and I’m a little crooked and I have a little trouble with my S1 joint, my chiropractor has worked wonders.

    She also has extensive knowledge of physical therapy, so I tend to pick her brain.

    Today she told me to do balance exercises, like standing on one foot; calf stretches and anything for my ankles.

    And my past experiences in physical therapy for balance came flooding back.

    I stood on each leg for at least 10-15 seconds four times; I bent one knee and pushed the wall a few times; did calf raises, toe taps, some side steps and matching.

    She also told me to get that blood pressure under control because that also affects balance.

    My chiropractor’s web site

    PS: I destroy shoes. I wear heels at an angle. This weekend I spent about $80 on new shoes for myself. That will help the falling problem, too.

    Stress

    I’m exhausted.

    Obviously stress is in the air today. Nala ate through her perch in her cage. She has two, but only one runs the whole length of the cage and she ate the end off it.

    She played with a bunch of her toys, so I don’t know whether to chalk it up to boredom, anxiety or rambunctiousness. But she’s been here about 16 days and she ate her perch.

    I guess I need to find her some more toys. Although she does have a bunch.

    She seems to be talking more and dancing more. Her favorite song is Angelina by Harry Belafonte.

    Today I went through some medical bills, tax paperwork, a school fundraiser and some band trip stuff with my soon-to-be ex-husband. We all had dinner together. He brought a pizza.

    Then I finished my chores. Laundry. Bird cages. Some vacuuming. The roomba would not go to home base. After an hour and with the battery almost dead I discovered why… the roomba had unplugged its own base while vacuuming.

    And to make my day a little more demoralizing, I tripped over my own two feet walking between buildings at work. The administration offices and the literacy center are a block apart. And I just fell. I was hungry, probably worn thin from too much stress.

    Someone across the street saw me, and yelled to see if I was alright. She was walking a very large dog. I got up and said I was fine. Barely even scraped my hands.

    “Darn ice,” she said.

    There was no ice. Just me and my faulty legs.

    Sometimes I feel so healthy and strong.

    Some days I feel so broken.

    That is what it feels like to have cerebral palsy. Sometimes your body works, sometimes it doesn’t.

    The joys so easy to miss

    If you’ve read some of this blog, you probably know that I have a relatively new job in a brand new field that is giving me tremendous potential to grow as an individual and a professional. It’s challenging and rewarding and it allows me to do some good in the world.

    But in any new job there comes a learning curve and change can be exhausting. On top of my career change, my husband and I separated six months ago.

    So that’s another part of my life in flux.

    Last night, I went to the podiatrist as my toe has been bothering me. It’s the same toe on which I dropped a 15-pound dumbbell almost 2 years ago. I also broke that ankle 4 years ago now.

    I was fairly certain I just had a blister in a weird spot that went a little wrong but with my cerebral palsy I didn’t want to take chances.

    When I got to the doctor, after waiting a week to get the appointment, I realized I forgot my wallet. Luckily I had ways to pay them and my daughter texted me the information in my wallet but that stressed me.

    And then the doctor trimmed my toe nails and removed all the pretty nail polish from my recent pedicure. Now I know that is something he needed to do, but it made me very very sad.

    Then he prescribed me an antibiotic because it looked like the toe did have a blister, got infected, and maybe it was going to be fine but why take the chance.

    So I had to go home, get my wallet, and go to CVS.

    My daughter came with my and as we waited, read this joke book to me:

    I laughed at a few, despite my best attempts not to.

    When they built the Great Wall of China where did they go for supplies?

    Wall-Mart

    And then she begged for the book, and the cashier pointed out I had a 30% off coupon on my CVS card so now we own a $3 joke book.

    And she’s been reading me jokes ever since.