Welcome 2022

I can’t believe it’s 2022.

The teenager graduates from high school this spring. My baby is graduating in 2022. My baby.

It’s been a good start to the year.

My great grandmother was born January 1, 1900. So every year I think to myself that my great grandmother would be X years old. 122. She died in the 1990s.

I woke up at 4:30 a.m. and cuddled cats until 6ish. And believe it or not, I had a cup of coffee and starting doing chores— dishes, meal planning, updating the wall calendar.

The teenager came home from work around 9 a.m. She and her dad brought my favorite coffee, café con leche, and a Sizzli: pork roll, egg and cheese on a bagel. I have wanted to try the pork roll Sizzli for a while and it was delicious. 19 grams of protein and 400 calories.

The teenager and I went to the gym, where we goofed around during the official Boot Camp class. She loaded 188 pounds onto the leg press! When Boot Camp was under control, we started barbell squats and then Romanian deadlifts.

The teenager squatted 135 pounds! I made it to 115, but I wasn’t comfortable attempting 135. It’s too close to my body weight.

I love to watch her lift.

Then, I went to get Nan as we were scheduled to work. After we finished her writing, I prepared a chicken bone-broth soup and a cheese and pierogie casserole. My Hungryroot is stuck in transit so I rooted through my pantry to see what I could prepare. I had a long overtime shift yesterday and don’t want to spend my day off grocery shopping.

And then we starting reading the upcoming Parisian Phoenix anthology, Not An Able-Bodied White Man with Money. And meanwhile Joan is shooting more photos for Trapped.

I have received several beautiful messages today— from current and former colleagues at work, strangers on my blog, and my psychologist.

And another good thing— I got to laugh heartily with my daughter. Mostly at the expense of her dog.

And this is Bean trying to make friends with Khloe. Video

** P.S. I haven’t done my Cobra pose physical therapy. My spine is hurting. Is this why?

I had a good day

It’s been a while since I’ve had a good day. Sunday was okay, but then Monday was hard. I had to ask the question—

How can one day be so much harder than the day prior? Shouldn’t grief get incrementally easier?

I had either a mild cold or intense backlash from not taking my allergy medicine which really fatigued me. Combine that with my father’s death, no real Christmas to speak of and a formerly good friend reappearing Sunday night to gaslight me, again, hopefully for the last time.

I have been short-tempered, moody and a little meaner than usual. We all understand the reasons why, right? In addition to this very emotional stuff, I am still dealing with what is essentially premature aging in my spine and a new extended work day and a daily schedule that involves flipping my previous life upside down. I used to go to be at 2 a.m. and now my alarm wakes me at 5 a.m. That is, when cats don’t request a cuddle at 4:30 a.m.

The former friend in question here wished me a happy and safe holiday after ignoring me for the last three weeks— which unbeknownst to me was on purpose because I wouldn’t provide this person informative on a quasi-sorta date I went on. This person felt slighted and like they were not valued as a friend because I did not share something I felt was personal and none of their business (I told none of my friends) AND something that didn’t go anywhere worth reporting.

Apparently, this friend— who has a history of gaslighting— stopped looking at my social media, my blog, etc. Not once did this friend say anything to me.

This friend said nothing when my dad passed.

So, being at the end of my rope in every category, I lashed out.

I said mean things. The same mean things I have said to this person before and this person has responded not by addressing those issues but with points on how nasty I can be.

I’m wondering if I need to block this person. I don’t want to, because once upon a time this person was a good friend. But circumstances outside my control have changed my relationship with this person.

And I don’t have the emotional energy to placate people any more.

And in those same terms— I am so grateful for those friends who keep checking on me. You know, the ones that actually pay attention to what is happening in my life.

But anyway… my good day…

I am realizing more and more that stress makes my aches and pains flare. And I wonder if that contributes to the burning sensation in my quads and my instability.

At work, it quickly became apparent that I was hitting my metrics! I texted the teenager and asked if she wanted to have breakfast on my 15 minute break. She made a Dunkin run and brought the dog to see me.

I think I maintained 95% in QC all day.

Lunch was delicious — leftover chicken with vodka sauce and fresh broccoli, kale, and spinach.

And I got to style card, which I also got to do yesterday. It feels good to do something different and work in positions not everyone in the warehouse knows.

It just felt like a normal day, and I felt like me, and not a foggy me.

The UnChristmas

For the first time since December 15, I felt like myself. I’m still grieving. I’m still hurting, but by the time end of today (12/26/2021), the overwhelming hurricane of different emotions had pushed me into its eye. And I felt like me.

Yesterday was a hard one. My mother called early in the morning, wishing me a Merry Christmas. Really, my brain couldn’t even fathom why she would wish me a Merry Christmas when I was home alone and my dad is newly dead.

The holidays are always hard on me. They start with hope and usually end with disappointment. I had often said I wish I could ignore them all together. Just skip. And go to Paris.

There were no presents to open Christmas morning. I let the teenager open hers early when we needed some joy in the midst of funeral stuff. No decorations. I never got the Christmas tree up. I never listened to Christmas music this year— and I love Christmas music.

The world stopped when my father died.

The teenager has multiple pet sitting responsibilities. Something like eight visits a day. And her father just got his new car on the 23rd, so I had expected to have a car to visit family without her.

My nephew came down with Covid so there would be no gathering with that side of the family.

So my little funeral tantrum that led me to spend most of the service in my car apparently prevented my exposure to Covid.

I did have a bit of a something— a cold? A sinus issue? Backlash from not taking my allergy medicine for a week?

And I had hoped maybe I could go have some of Mom’s lasagne.

But by the end of her phone call, I think she hung up on me. I don’t know if she realizes it, but her last words were, “well, excuse me for being alive.”

That stung.

I thought she would understand how much I was hurting. She lost her dad when she was 21.

I spent the day alphabetizing and organizing some cards I’ve been saving. It tools about six hours, while watching reruns of ER and drinking coconut rum and pina colada lemonade.

The teenager brought home sandwiches from Sheetz. Other than that my meals were Christmas cookies and potato chips.

I went to bed around 8:30 pm and woke at 4:15 a.m. I did my physical therapy cobra poses and went downstairs to have my coffee.

When I arrived at work, my body struggled with anxious feelings, trouble breathing, difficulty regulating body temperature. I was no longer sick, though the post nasal drip is still very real.

When we got to Freestyle— our assignment for the day— there was no work for us. So a bunch of us had to transfer to Freestyle Pick and go out into the warehouse to pick our own work. And although the Freestyle carts are 80 items instead of 40 like ordinary fixes, I had a great time. I always liked picking. I arrived back in Freestyle not first but not last.

And I got to see the warming sunrise through the warehouse windows.

My guess is that I performed at about 90% in Freestyle QC/ship.

And then, at the end of the day they asked me to go pick again! And despite my back hurting a bit on the right side, once again I had a great time. The Freestyle/Direct Buy cart took me 45 minutes. I imagine the goal is 40 minutes.

That motion drove the feeling of panic away.

And before I left, I grabbed some hard-boiled eggs to share with the dog. I had asked the teenager to grab some jarred vodka sauce at the grocery store when she was between clients and she one-upped me.

She went to George’s Pizzeria and bought their homemade vodka sauce. My favorite.

And our cat foster godmother, now the teenager’s client and the teenager’s boss at Apricity Pet Care, left her a bottle of wine to bring home to me.

While the teenager finished her afternoon shifts, I made spaghetti. I sautéed a chicken breast and heaps of fresh broccoli, kale and spinach. I mixed it all up with George’s vodka sauce.

We ate like queens.

And then as I cleaned up the leftovers and packed my remaining work lunches for this week (Mr. Accordion stopped by and brought me his scrumptious halupkis that I finished today), the dog grabbed my favorite cat by the scruff of his neck and starting running around the kitchen with him in her mouth.

The cat was fine. The dog just wanted to carry him.

I poured some wine and grabbed some cookies.

And that is my unChristmas update.

Exploring my Disability update and Podcast review: Disability After Dark

I am scheduled for a CT scan of my brain at 1:30 today. The neurologist’s office called at 9 a.m. and warned me that the insurance company has not authorized it yet.

Update: it is now 12:30 p.m. and the neurologist’s office has called and has canceled by CT scan.

I’m disappointed for two reasons: 1. I was excited to have to pay much less for my CT scan because my deductible was met (and do I dare to conspire that maybe the insurance company is dragging their feet so I have to pay for it?) and 2. I want to see my brain.

I would love to see a functional MRI of my brain but that will never happen as I have a dental implant and while that gives me a good structure for my missing tooth, the MRI would rip that metal out of my head.

Cerebral palsy is a condition that occurs when either at birth or after birth the brain doesn’t get enough oxygen and therefore, I am assuming here, dies.

But children are amazing creatures and brains rebuild and rewire as best they can.

In my case, I have hemiplegic cerebral palsy that causes symptoms in my lower body. Quadriplegic cerebral palsy effects both halves.

Cerebral palsy is a static condition, which means it doesn’t get worse or get better. Although, everyday wear and tear on the body can be exacerbated by awkward movements, which causes premature aging.

My neurologist assessed me and came up with some malfunctions, including these:

  • I have spasticity in my legs— specifically in my quads and calves. This means my muscles do not relax. Stretching the muscle groups forces them to move and is as close to relaxing as they get. Stillness often causes stiffness. So literally standing up from my bed and walking after a good nights sleep makes me feel like the Tin Man from The Wizard of Oz.
  • My feet naturally turn inward and I don’t have the range of motion I should have in my ankles. My left foot specifically likes to try and hang out under my right foot when I walk.
  • My feet don’t have the correct temperature sensitivity. This explains why I never feel my feet are cold until they are purple. And why once they are cold, it’s practically impossible to get them warm again.

I’ve been researching everything I can find on cerebral palsy and an interesting podcast is Andrew Gurza’s Disability After Dark. He originally started the podcast as a sex podcast for people with disabilities but, as a disability advocate, has interviewed a wide range of people and covered a wide range of topics. He’s also launching a sex toy line for people with disabilities.

Like any podcast, some episodes are stronger than others based on the guests, but I love his diversity in interviewing people with a broad range of experiences. And he is very honest about his life and brings that same level of truth out of those he features.

Merry Medical Morning

I woke up with not much voice, still not quite right and worrying that maybe I have a cold. I haven’t been sick since I had Covid— more than a year ago— but I drank lots of hot liquids, chugged some DayQuil and ventured out into the cold.

Why?

The teenager had a 9 a.m. greatly anticipated appointment for a hearing aid fitting. When they put her in the test hearing aids, her voice quieted immediately.

Apparently speech tones have been difficult for her to hear for quite some time and the pandemic made it more obvious that she was reading people’s lips.

The doctor was greatly personable and loved the teenager’s enthusiasm.

From there we went to the neurologist— the first time I have ever visited one. This visit was one of many doctor appointments in 2021 I booked as part of my fact finding mission regarding my body and my cerebral palsy.

(My temperature was 97.6, so whatever is making me feel “off” does not include a fever.)

And so I talk with the assistant, the resident and the doctor. I was very impressed with the doctor and even more impressed that she kept checking in with me— “I want to make sure I address any questions you have.”

But honestly I got scared because when she first walked in she said, “so you think you have cerebral palsy.”

As if I had googled it and just came to that conclusion with web m.d.

And I’ve heard other people say it… but never experienced it before today. When you have a visible disability that you often have to explain to people, when someone threatens to change that diagnosis it’s very unsettling. I never expected to feel so uneasy that someone might challenge the very thing that has defined much of who I am, even if I hate the fact that it intertwined with my personal identity so deeply.

But spoiler alert, after examining me and watching me walked she touched my knees gently and said, “I agree.”

Not only did she explain things I already knew about the condition (it’s static and will not change), but she pointed out that I often step on my left foot. I literally trip over my own foot. She also sat on a stool beside me— so the doctor was below me making eye contact upwards. I have never had a doctor do that before.

She referred me to the physiology department, and thinks they may recommend Botox to relax my leg muscles and prescribe braces for my feet to help them face the right direction.

She also scheduled a head CT, warning me that it will show brain damage, but that young brains compensate for damage via their elasticity. (Is that the word?) I’m excited about this because it gives us a baseline image of my brain so as I age we won’t confuse my cerebral palsy brain with, say, a stroke.

And she was impressed with me, as doctors often are.

More on this journey:

Perhaps it’s time for a recap

Perhaps the dog says it best…

It’s been a week since my dad died. And I’m exhausted. We’re all exhausted. I haven’t taken my allergy medicine in a week (finally did tonight) and my head feels congested. I hope I’m not sick.

In news not related to grief, I returned to work yesterday. In retrospect, this was both good and bad. I needed rest after all of this craziness and I didn’t get it.

The checks for the incorporation paperwork and fictitious name registration for Parisian Phoenix Publishing Company have been cashed.

Darrell Parry’s poetry manuscript, Twists: Gathered Ephemera, opened to presales yesterday. And Gayle has been hard at work with cover designs for Not an Able-Bodied White Man with Money. And Joan and the residents of Plastiqueville have been hard at work with the illustrations for Trapped.

Khloe and Louise

Currently I am in bed, under the heat blanket with multiple cats on my lap.

My week has included some beautiful text messages, like one from the administrative assistant at ProJeCt, and heartfelt cards and so many flowers. Phone calls. And sympathy food! Offers of halupkis and coffee cake and delivery of alcoholic egg nog and rum cake.

I have gained back the weight I lost.

My work performance today was almost normal, but my emotional state was… what’s the word? Unstable?

I called my traveling companion and told him all my tales from the funeral— and he told me it sounded beautiful and that he thinks he would have liked my dad and wishes he could have met him.

And a couple times today I folded this sweater, the same style and color I was folding when I got the call.

My days are full of loss and laughter.

I built a little shrine. A place for my dad to have coffee. Because I anticipate that sometime soon I will feel his presence here.

My mother gave me the photo at the funeral. It was from 1975. The year I was born. Probably around the time they got married.

I lost more than I thought

I try so very hard to find something beautiful to say even in the midst of pain.

I try to be grateful.

I try to be humble.

I failed today.

And that’s okay, but it’s also not, but you can’t flog yourself over the past.

So you get stuck.

In the hurt.

We buried my father today. My rock. My daddy. I feel like he tried to temper my flaws, gave me confidence when I had none, and made me laugh when I thought the world was crumbling.

I didn’t attend the services. I arrived eight minutes late for the family viewing time and by the time I made it into the chapel…

I left and sat in my car.

A lot of people loved my dad. He made everyone feel like he was their best friend. He made everyone feel like part of the group.

And he wasn’t there to make me feel like I belonged.

I’m disappointed in myself because I can hear his voice in my head trying to smooth things over, and he hated when I get emotional.

I resurfaced at the diner, with “Smiley” (one of our favorite waitresses) bringing us pancakes and fried food.

My sister Dawn, the back of my brother’s head, and the teenager

The first day of adieu

I spent most of my morning trying to be practical and do what needs to be done. And maybe get some breakfast before heading to my father’s viewing.

My morning coffee companion

The teenager went to her morning job— a cat sitting visit— and then had breakfast with her father and my college roommate.

I finally forced myself to eat an egg with some kale.

And I found myself sitting quietly.

Struggling to find shoes that fit.

We drove up to the funeral home and met my aunt and my uncle’s widow and her family. My older sister and her husband came next. And then my stepmom and her sister (and her extended family).

My uncle’s widow thanked me for my recent writings as they helped her adjust to the reality that my father has left his earthly life.

(Later, my stepmom’s nephew hugged me and his wife told me how beautiful some of my recent writings and reflections have been.)

Together, we entered the funeral home. And the funeral director apologized for being in her slippers, but honestly it brought me a sense of home.

We walked into the chapel, and my dad was surrounded with red and white roses and celebrated with so many flowers from friends, relatives and colleagues (some of whom even signed his nicknames for them instead of their given names).

Photos everywhere.

  • Photo 1: On the top, that’s a photo of my dad and his older brother, Earl Ivan Jr. or “Skippy.” The photo on the bottom right is my dad on microstock race night with my nephew holding the now teenager as a baby.
  • Photo 2: My dad holding the now teenager at the West End Fair, at the tractor pull. It was my first outing with the baby on my own. She was about 8 weeks old.
  • Photo 3: I had to take a photo to remind me of how peaceful Dad looked, with a slight smirk like he got the last joke. He just needed a remote and some pretzels. The teenager said before he passed on Wednesday morning, she could feel his reluctance to leave us, but the calm when he did.
  • Photo 4: My stepmom and my aunt, the last remaining sibling
  • Photo 5: the teenager and her dad
My brother and his dog

My mother came and said some nice things to my stepmom, thanking her for always being nice to myself and the now teenager, and my stepmom said we are easy to love.

My friends and Parisian Phoenix staff — Gayle and Joan— came. (And the whole day was a theatrical farce of people coming and going and not seeing each other.)

My college roommate slipped out with the teenager’s dad to grab sandwiches.

And my in-laws not only came but my mother-in-law, at my request, made chicken and potato salad and brought many other goodies. Including Memmy’s fruitcake and Uncle Lee’s baked beans.

It was a long afternoon — and people kept leaving things in Dad’s casket: cigarettes, a Harley Davidson hat, flowers, a racing patch.

I wonder what tomorrow will bring.

Solstice magick

Before my father’s unexpected passing on Wednesday, the teenager had hoped to celebrate Yule instead of Christmas.

Today is the full moon before the winter solstice. We are approaching the celebration of the birth of the sun, who will, as the time comes, restore life to the Earth.

And today is the day my college roommate arrived for my dad’s funeral. My dad always called her curly.

But within moments of her arrival, I realized— she came to support me and rekindle our friendship now that our children older, but the universe sent her to share her energy with the teenager. Curly had a vibe that the teenager needed. I could feel the difference in the energy of the room and knew that Curly had brought peace.

After all, Curly was one of the women present for the teenager’s one year birthday ritual where she promised to help guide the teenager.

And tonight she did. And it was the perfect time for it.

We spent the night reading tarot cards and charging crystals and telling stories of our ridiculous past together— Curly, the teenager’s father and I— and then Curly went to spend the night in the teenager’s room in her father’s apartment.

It was the grounding and the relief we needed before tomorrow.

*i know the actual solstice is December 21, but to me, the full moon is the start of that celebration,


In other news:

  • I received another gorgeous bouquet, this one from my friends at Mary Meuser Memorial Library.
  • Brigid of the Celtic Pride got adopted today!!!
  • Nala the Goffins Cockatoo got so mad that I wasn’t to bed on time that she broke out of her cage, broke Yo the parakeet out of his cage, and stole his cage and wouldn’t let him back in.
  • Our cat foster godmother stopped by and actually socialized with Touch of Grey— the cat who terrifies her. ToG has come so far! She is 90% normal, friendly cat.
  • William Prystauk released his fourth novel in the Kink Noir series, Bondage.
  • Gayle, my partner at Parisian Phoenix, wrote a fascinating blog post about 2021 book projects.

Defining Friendship

Yes, this is another philosophical piece spurred by the death of my father. And it seems appropriate to use his passing as a reason to explore friendship, as the teenager says, because everywhere he went he made a friend.

One of my fellow crazy cat ladies brought me a matcha latte— having seen this social media post:

And several friends and in-laws have offered food or services (letting the dog out, making cookies trays or fried chicken for guests). I even have a sympathy sushi meal later today.

My college roommate, whom my dad called “Curly,” will be arriving from the Baltimore suburbs this afternoon.

Poppop couldn’t go anywhere without making a friend.

The teenager

So it makes me wonder— and remember— how many people gather around me in a crisis, even if I can’t always find someone for the everyday ups and downs.

Maybe the notion of friendship is not about how available someone is all the time, but who reaches out without prodding when you don’t even know how much you need it.