Wednesday, February 2, 2022

Black Holes and Role Reversals and a New Year

 

Black Hole image from EHT

I can’t say that 2021 was a year to forget because there are a lot of things I can’t remember. I don’t remember because I had a huge non-malignant brain tumor that was apparently affecting my personality, my walking gait, my short-term memory, instant recall and most notably I was forgetting my words while speaking. Friends and family are just recently telling me of how they felt I was “off”. Something wasn’t quite right, but they never relayed those feelings to me.

There were apparently several private conversations about me but nobody said anything to me, except my husband Mike who would repeatedly look for some material reason for this ‘slip’ in my usual daily spunky personality. His was the opinion that just one of my many pain medications was the primary cause, either that or early onset Alzheimer’s. I was and still am treating for Psoriatic Arthritis. I have come to realize and reluctantly accept that “Mister Arthur R Itis” and I have an arranged lifelong marriage. There’s nothing to do except to manage the marriage and try to find what works in finding some comfort and ease in daily tasks and mobility. I have resumed my yoga, some meditation and embraced alternative medicine and analgesics and with the start of Medicare pray that my current biologic treatment gets pre-authorized. 

Navigating Medicare is mess. I believe it’s by design to make it difficult.

The Pain management program I was prescribed is no longer the preferred supposed panacea for me.   I   must be able to function.

The Black Holes are just that, blank spots in my memory and recall, some huge, some brief snippets of time, but there is much I feel I’ve lost and have no hint at what it is that I’ve lost. Maybe that is best but it is no less disorienting and frustrating.

Role reversal was something that automatically happened. My husband took the reins I usually held. I often say, He makes things happen, but I make them better. This time he did both. I found after the surgery I was just fine with this. Recuperating from brain surgery was and is major thing, a BIG FFFing DEAL.

I was not prepared to be almost totally dependent on being taken care of by another. That was usually MY job.

Patients with brain tumors usually have to become reliant in a caregiver, because they’re not always able to do as much as they want to or were previously able to do, due to the side effects from the tumor location.

The incision was long around the top of my head, held together with staples. I am a relatively fast healer and was staple free in one short week. I had the mistaken assumption that this was going to be a recovery of a few weeks, not months if not the better part of a year.

It’s a disappointment I still struggle with, but I still move on.  

I welcomed 2022 at a New Year's eve party in the middle of the eastern Caribbean, on a cruise ship appropriately enough called the Reflection. It was a fun celebration, as I remember it

Here’s hoping that I have fewer black holes in 2022.

Happy 2022!




 

 

Friday, December 3, 2021

Gratitude and Appreciation

 

I am thankful for the here and now.

On most weekdays, my house is relatively quiet as everyone but my husband and I has left for work or school. The noise of a full house of people and their day will descend on us in shifts from 2:30 to 6p.m.  Some days I welcome it, but sometimes in what feels like just as many days, I do not. I pine for the peace and quiet.

 The beginning of retirement was not the happy go-lucky days, as in “everyday is Saturday” that friends used to brag about to me. Although I did enjoy a trip to Key West celebrating my retirement, these last eight months were far from anything I thought or dreamed of how the summer of this retirement would be.

I had visions of weekday pool parties with some of my fellow retirees. I planned to spend one-on-one time with my younger grandchildren.

 I scheduled a much overdue knee replacement for the end of April. That surgery was relatively uneventful, rehab was challenging, more so than I and my rehab team could have imagined. Something was ‘off’. But I soldiered on, sort of, hoping to pick up with my summer plans.

Have you heard the saying, “If you want to make God laugh, just tell him YOUR plans.”?

I don’t recall conferring with the Almighty, but my plans were dashed by a Brain tumor. It was the pesky culprit that was making me seem ‘off’ and constantly falling, among other unsavory symptoms.

So, one might ask, “how can you write about gratitude and be thankful with such a scary and potentially deadly episode, derailing your summer of retirement”?

Let me tell you the upside to all this crap.

My family calls me the accidental matriarch. It’s not a role I signed up for or a club I wanted to join, it just happened and with our revolving door, and always seeming to have ‘room at the inn’, it is a place where more than a few have landed and stayed till their world stopped spinning out of control and made their way back into it. It’s what we do.

Where does my gratitude come in?

The matriarch had brain surgery on Friday the 13th and needed constant care and attention and everybody stepped up into some sort of support role. My husband took the over and set up everything he thought I would need, from a hospital bed set up in our living room to a commode with special liners so it could be easily emptied (he was especially proud of his thoughtful and practical purchase). He took over my daily medications and being the Libra that he is, never missed a timely dose.

I am grateful for him stepping up and taking over the care I needed. He is a man that was not used to taking the reins of messy stuff like that, and he did it seamlessly. In all our years together, he never changed a poopy diaper, but never hesitated to empty and clean the commode.

All I had to do was sit back and get better.

I am grateful for the family members who dropped what they were doing and stepped in to do what needed to be done: my brother for making things happen and especially my sister, assuming the unpleasant task of keeping my nethers clean and fresh when I wasn’t able; my kids for always ‘being there’ and assuring I was comfortable and not in need of anything; my older grandchildren and their friends displayed their potential for empathy and caring for another person. It is a very rewarding feeling that our family is who we are and what we do.

I’m grateful that this bump in the road sent a timely message to my family that everybody has an expiration date, and mine came close.

I’m grateful that this episode has made my family realize that as strong as I appear and often hold others up emotionally, sometimes we all have cracks in our veneer, ‘even the tough up the middle’ matriarch.

I’m grateful for people that have offered prayers, sent get well cards and Mass cards. It’s a thoughtfulness that fills my heart.

With this holiday season, I am most grateful that I had thanksgiving dinner at my sister-in-law’s with my 86 year old Mother-in-law, who I am most confident says a second rosary in her nightly prayers, just for me, she has said so every time I see her.

Our annual family Festivus is tomorrow. We are a very boisterous bunch with lots of strong personalities that some might find overwhelming, and it only adds to our reason to celebrate.

I’ll be grateful to be there.

 

 

 

 

 

Wednesday, November 17, 2021

Leaves, Leaves Everywhere


 It's been over a decade since I wrote about Todzilla and
 Leaving the Leaves

It was a day that a rambunctious Toddler, named Meghan but aptly called, Todzilla, got the chance to blow off some of her endless energy and have some messy fun, much to the chagrin of her mother who preferred to dress her little girl like a prim doll. But through the years Meghan, also known as Toddy, has proven her strong will and among other things, dresses as she pleases, and it's rarely prim and polished. That day of leaving leaves in a huge pile and letting a toddler jump into it, tossing handfuls of leaves into the air, was memorable and most of us enjoyed it.

Today Toddy is putting most of her energy towards sports, mainly field hockey and basketball. She's a small person but has the hutzpah and spunk of a beast trapped in that small body. In our family we don't have too many smallish members, coming from 'good peasant stock', and she struggled emotionally when she realized that her lifelong height probably won't go beyond 5'2". She barely reached that height this past summer. It was a time of personal celebration.

She also is growing into a striking beauty. For the homecoming dance she wore a beautiful blue dress, cut high on the thigh hemline, cascading hair, perfect make up and finished off the look with white high-top sneakers. Yup, that's Toddy. 

For me, the beauty of autumn and falling leaves is awe-inspiring as the season changes and staging the finale of warm weather preparing for the short days and long nights of winter.

Meghan noticed that big maple tree the other day and said, "Grammy, look, the tree still has most of it's leaves."


And so it does and Toddy is wearing her white high-top sneakers.


Sunday, October 17, 2021

'Tis The Halloween Season', The Picture in The Pet Store πŸŽ΅π†”π†”π†”πŸ’€πŸ–ΌπŸ˜

 

"How much is that doggy in the window?

The one with the waggly tail."

That song by Patti Page played a constant loop outside the pet store as I walked along Fifth Avenue. I could hear it as I left the Starbucks sipping my $5.25 Pumpkin Spice Latte.

I browsed the pet shop window watching the cute puppies wrestling with each other in their fat fluffy puppy bodies. Knowing it was not wise to go into the shop, I lost my inner argument with myself and went into the store anyway. What harm could it be just to watch them at play?

I went in.

There was a tank full of Clown fish, almost as fat as the puppies. Next to the puppies was a cubby of kittens not as playful as the puppies but just as fluffy and pudgy. A solo bird cage across from the counter held a blue macaw.

Behind the counter was a young woman who seemed to be preoccupied with a program streaming on her tablet and listening attentively through her ear pods.

The Patti Page song continued to play over and over.

I noticed a faded picture was hanging on the wall behind the woman at the counter.

The picture blinked.

I thought it blinked and then it yawned! The macaw started to mimic the picture’s yawn. I looked back to the picture and it began to grin at me.

“Go ahead,” said the macaw. 

I motioned to the woman behind the counter, pointing back and forth between the bird and the picture but she was entranced by what was on her tablet.

All at once the bird began to sing along with the Patti Page. 


"How much is that doggie in the window?

The one with the waggly tail…"

And then the picture shouted, “Oh why don’t you shut up?!” The bird continued, “I do hope that doggie is for sale.”

The picture yelled at the bird, “I don’t want some parrot that talks.” But the bird continued, ”That doggie will have a good home.”

By this time the lady behind the counter looked up, unplugged her ear pods and said, “Can I help you?” Finally, I had her attention but the bird went silent and the picture faded.

I asked what was up with the picture and the macaw and their bickering, not to mention the singing. “Excuse me?” she asked and was clearly annoyed with my question.  The picture winked at me. “Never mind”, I said and skedaddled out the door.

The song still looped outside and I heard her say as the door closed behind me, “Okay, boys. Continue.”

'Tis the season for spooky fun.


Sunday, March 29, 2020

Discretion be damned - Biting my Tongue and it Doesn't Come Easy...


Reading an article in Time magazine about how to support Older Relatives during the corona virus pandemic... 
I am the older relative and understand the danger of a compromised immune system. My real concern is my 23 year old granddaughter who THINKS she is practicing social distancing, but is truly putting her own life at risk as well as the people she is casually interacting with. She has been a lifelong asthmatic. 
If she contracts Covid-19, she could die. But she doesn’t thinks so. And nobody is going to tell her otherwise.
She is considered an essential worker in a healthcare environment, and her workplace is taking precautions to limit her interaction with the patient population. But she still travels back and forth from home to her boyfriend’s family house. She orders take-out meals for the households and to support our local small businesses. It’s all very humane and generous. 
It is the community support that just might lead to exposure. I worry and not needlessly.
At this time, this pandemic has not peeked. The worst is yet to come according to the medical experts. I believe them. I have survived the loss of parents, a cancer treatment, thriving through an immune disease, the betrayal of a family friend and many more emotional assaults. 
I do not believe I could survive watching my daughter lose her daughter because she refused to pay attention to a warning of concern for her own well-being.
We suggested she pick a place to stay until things calm down, the curve flattens out. She dismissed that, repeating “I’m only going back and forth.” That’s not true. She and her boyfriend are doing what they naturally should be doing a young couple in love. I remember all too well the comfort of being in lust and love. I married at 18 and by the time I was their age, I had 2 kids and a mortgage. Life and all the trappings that go with it was all too real.
This is a difficult time on a lot of different levels. With the years of life us ‘old heads’ have under our belt it is difficult for the younger ones to believe our warnings could hold any weight of truth or experience. Life has been very good to this generation. With the exception of 911, many of this generation has not experienced the threat of potential disaster. Staying home is not a hardship if it could be life-saving.
My fear is that has made them cocksure and soft.


Thursday, May 23, 2019

One Step at a Time, Everything Gets Done


I met Mike and his family in 2014. We were attending the annual USA Hockey Disabled festival in Marlborough, MA. Our team, the Wings of Steel Sled Hockey team, needed a goalie. USA Hockey drafted Mike to play for us. 
Mike had just begun to explore Sled Hockey and had not yet played with a team let alone between the pipes. He played with the Wings the entire weekend and returned to Ohio as a Wing of Steel. And we looked past the fact that he and his family are Steelers and Pirates fans.We have followed Mike and his twin from High School graduation to their college experience. It’s kind of like watching a favorite nephew on a rich path of life experience. So as not to wax on too much, after reading the article below I asked him if I could share his piece that appeared in Kentwired
It speaks true from the voice of a person born with a disability who does not live his life as a disabled person. He is an extraordinarily “differently abled” person. 

Kudos, Iron Mike. Thanks for sharing your positive insight.
Here is his article below, and the link , http://www.kentwired.com/article_149c305a-78e3-11e9-9cc6-57809630e31a.html.

Opinion: One step at a time

·         Michael Reiner

·         May 17, 2019 Updated May 20, 2019
My name is Michael Reiner, but my friends call me Iron Mike. 

My family and friends know that I love sports, WWE, and a good cheeseburger. If you have a recliner close by after I’ve eaten a cheeseburger, it’s game over. 

I live with my wonderful family in my hometown of Wellsville, Ohio. My mom, Paula, is my hero and my biggest inspiration and my dad, Bill, is my biggest fan. Then I have my twin brother Mitchell who is my PlayStation 4 partner, roommate, and best friend. And lastly we have our 6-year-old German shepherd, Bell. She protects our house and makes sure to bark at anyone and everything (by the way, Bell doesn’t like hats of any kind). 

However, as the great Rocky Balboa used to say, “Life ain’t all sunshine and rainbows.” Mitchell and I were born three months premature. I was diagnosed with cerebral palsy. It is a condition that tightens the muscles in my body. 

I do not let my disability slow me down. In fact, my family and I say that I am differently-abled because I can do everything in different ways. I’ve gone from walkers, to quad canes, to a wheelchair, all the way to forearm crutches. I went through 12 surgeries in 2010 and I’ve been in great shape ever since. Life has definitely been a journey. 


Here I am in kindergarten standing with one of my quad canes. I feel pretty cool in this photo. We went to go get ice cream the day this photo was taken, so that must be the reason why I felt rather cool.

Courtesy Michael Reiner



My dream is to one day work in Pittsburgh as a sports writer or broadcaster. My family and I love to go to Pirates and Steelers games. I hope to be successful in Pittsburgh so that I can continue to go to more games and enjoy the atmosphere of "The Steel City."

I just finished my junior year in the Kent State journalism program. The experiences that I’ve had with Kent State’s television station TV2 and radio station Black Squirrel Radio have been top-notch. I have learned so many things so far that I will carry with me for the rest of my career. 



I had a great semester as the Tuesday morning sports anchor for Kent State University's TV station, TV2. This coming fall, I will serve as Portage Trail County (PTC) Director. I will oversee all high school sports news coverage in Portage County.

Courtesy: Michael Reiner



Now it’s time to put the skills I’ve learned to good use. I start my internship at a local news station on Monday, May 20, and life is very, very exciting at the moment. 

I will have to add 15 minutes to prepare for my commute in the morning. This won’t be for breakfast, I already have time scheduled for that. The extra 15 minutes will be for me to button my shirt, tuck it in, and adjust my belt. These tedious things can be difficult, but they just take me a little bit of time. 

It took one step at a time during track practice for me to compete in the OHSAA State Wheelchair track events. It took one step at a time for me to qualify for the Scripps National Spelling Bee in the eighth grade. And yes, it took one step at a time to be able to walk on my own two feet. 

Everything gets done, one step at a time. 

I believe that other people with disabilities have the same mindset as I do. We all overcome struggles and move forward in our own way. Even though things can get difficult at times, I wouldn’t have my life any other way. 

Michael Reiner is a columnist. Contact him at mreiner4@kent.edu





Monday, May 13, 2019

What if Game of Thrones is Just a Game?


What was there to be disappointed with Season 8 Episode 5 of Game of Thrones? I was not disappointed. The show went pretty much as I expected.
The hand wringing and wrenching angst of Tyrion and Jon Snow over the last three weeks made it obvious they weren’t as confident as they claimed to be about ‘their Queen’ and her oncoming volatile mental state, which was predicted early on with the oft repeated line of her father, the Mad King before his own death, “Burn them all”.
I won’t wax on about character arcs and how the Game of Thrones writers and company should have played this out. I enjoyed the ride and will see it through to the end and over and over until I cancel my HBO subscription. My personal investment of time with this series has been one of self-indulgent suspension of reality.
 If I find fault with any entity it is with HBO. HBO should have expanded the 6 weeks to 10. The shortened 6 week schedule I believe is partly the basis for the full on fabulous CGI festival that has been showcased – I’ve seen some of the set construction for demolition and the green screen at Titanic Studios in Belfast, it is a mammoth production site. No dialogue or scene set up was ever going to do justice to the special effects work.
So, here is what I am proposing as to how the last episode MIGHT end. Feel free to chime in as to whether you agree or disagree.
If the title of the last episode is titled, “Spring after the long Winter”:
  • Arya will kill  Daenerys for destroying Kings Landing and all the innocents.
  • Sansa will take over the throne, since Jon and Bran don’t want it. Tyrion will be her hand.
  • Arya Stark has a Baratheon baby after her one night stand with Gendry, melding the two houses as predicted in the first season.
  • Brienne of Tarth presents a Lannister bastard baby, a potential heir apparent, but she has no regal aspirations, so she will remain close to Arya and Sansa.
  •   Jon Snow leaves it all behind and return to the rebuild the Wall and the Knights Watch.

·         Throughout the series, women have been consistently some of the strongest characters. That might play out to the end.
At the end, regardless how inane it might turn out, I have enjoyed the ride in suspending reality for and hour or two every week.