May, 1974. Jimmy Washburn lives in a sleepy small town with a beautiful wife he adores and his almost two children. He works at the small auto body …Big Butch debuts this week, free now on Kindle unlimited
Saturday (December 3, 2022) was International Day of Persons with Disabilities.
Coincidentally, today I am watching Hulu and catching up on ABC’s The Good Doctor. I started losing interest in the show when the characters starting experiencing once-in-a-lifetime traumatic events every season. The show seems to have become surgeons trying to save each others’ lives instead of the patients.
The main premise of the show is that Dr. Sean Murphy is on the autism spectrum and uses some special effects to show the audience how his mind works (which reminds me of the early seasons of House MD when they relied on special effects to show what was happening inside the patient, but more bookish).
Sean leads what I think everyone would agree is a normal life. And his journey to fit in and live that normal life is central to the program. Did the creators/writers make him a doctor so that people’s lives rely on him? Or is it to show that this is an amazing use of his unique mind?
SMALL SPOILER AHEAD
Regardless, the writers place his social struggles amid these high stakes events that really don’t depict ordinary life. In the current season, Sean’s supervisor Audrey Lim finds herself lucky to be alive but in a wheelchair. The initial quandary about this is Sean’s role in the surgery that left her paralyzed.
The first couple episode of the season address Lim’s adjustments to life in a chair, and this includes her trying everything she can think of to return to her life as a stellar surgeon at the hospital. And she does. And even while achieving these milestones, she is angry and dealing with disability grief. I would also venture to say that at some points she almost says she’d rather be dead than living this disabled life.
Now I’m on episode 4 or 5 of season 3, and now the team thinks they can find another surgery to cure Lim.
Why does Lim have to be fixed?
Once again, the mainstream media is showing us that disability must be fixed. I was so impressed with Lim’s balance of frustration and determination to regain her prestige as a surgeon. I don’t want to see her fixed.
I guess we’ll see where it goes.
But I also wonder what young people who rely on wheelchairs and other mobility devices would feel if Lim walks again. If a gifted medical professional can’t feel whole and productive without her legs, what does that say about the value of disabled lives? What young person needs to see representation of someone accepting their new abilities?
The Christmas season, in general, makes me anxious and uncomfortable. The reasons for this don’t matter. Just accept the statement. I spent Thanksgiving alone this year, though I know I could have gone to my in-laws. This year has been a year of firsts, first everything without my father. And spending most of my holidays home alone has been part of my grieving process. A great big letting go of all the expectations and obligations.
It’s the first weekend in December. The Teenager has asked to give up the Christian trappings and embrace our pagan side. So, we intend to celebrate Yule. She wants a small tree covered with pine cones and other items of nature. I’d like to make a dinner that includes rabbit or venison.
Yesterday, we ended up in Bethlehem– The Christmas City– and stopped to see The Teenager’s grandparents (in part because The Teenager added the grandparents to our phone plan since a certain phone service that focuses on seniors has sent phones Grammy cannot use and that don’t dial 9-1-1 when her husband is having diabetic seizures in a stranger’s driveway. Good job, Consumer Cellular.) Grammy is learning how to use her iPhone 13 and even FaceTimed her sister who lives six hours away. Even if the FaceTime was an accident.
I got to see Grammy’s tree and train, and eat the last slice of Grammy’s shoofly pie. While Grammy comes from Pennsylvania Dutch stock, she struggles to make a wet bottom shoofly pie. So she’s been working on it. And we brought the dog, so the dog got to see Grammy and Poppop and the squirrels in their backyard.
Then the teenager and I spent some time doing chores and resting before embarking on the one totally ridiculous thing that is our holiday tradition: watching Denis Leary in The Ref. And this year we watched it sipping chocolate laced wine, eating dusty road sundaes without the chocolate syrup and waxing our legs.
Every day I see more and more ways The Teenager has absorbed the values of my estranged husband and I, and the things that make us uniquely us are important to her. And that makes me happy.
And it’s not easy to be happy these days, under the weight of grief and the stress of disability.
Half way through the movie, The Teenager wanted potato chips. So she called her dad. He happened to be in the middle of Target. He brought us two bags of Doritos, one original red for The Teen and one Cool Ranch blue for me.
Because we’re all still family.
I heard the murmurings about Tim Burton’s Addams Family dark academia adaption, Wednesday, and I had to binge-watch ASAP.
You see, I remember watching The Addams Family on the floor of two different trailers, my grandfather’s when I went to visit my Aunt Sharon or Wicky’s, an elderly man who lived near my grandfather in the trailer park. My mom used to help James Wicks as he grew older. My mom and dad had lived in the trailer between my grandfather and Wicky when my they first got married.
I adored Wednesday and grew up to idolize John Astin as Gomez and later as Buddy on Night Court. I lost my mind when “Gomez” turned up on my current favorite show in the later part of the 1980s. To see a 2015 interview of John, click here. John Astin is still one of my greatest heroes on-screen. He even discusses working with cartoonist Charles Addams. If you haven’t seen the original Addams Family cartoons, I encourage you to check them out. Here’s a book that traces the history of the iconic Addams Family.
When The Teenager was four, our entire family dressed as The Addams Family for Halloween. She was Wednesday, her father was Gomez and I, of course, was French-speaking Morticia. The Teenager had a headless doll, I carried a deflowered rose, and we even had a silicone replica of my hand we cast as Thing and took turns carrying.
We purchased the original black-and-white television program on DVD. I loved the first movie of Addams Family reboots, especially Christina Ricci as Wednesday asking the Girl Scout played by the actress Mercedes McNab who was also Harmony on Buffy and Angel. Ricci returns as a house mother and horticulture teacher in the new Wednesday series on Netflix, though I did not recognize her.
I have very mixed feelings about this show, and the Teenager tells me I am not the intended viewer so that might be some of the problem. To lessen the pressure to rate this program with a definitive reaction, I’m going to present my reactions in pro/cons list.
WHAT I LIKED:
- WEDNESDAY. The casting of Jenna Ortega as Wednesday Addams could not have been more perfect. Her acting surpassed my every expectation.
- The costumes. Especially Wednesday. According to Variety, Colleen Atwood (who has impressive credentials) did the work– and wow did the costumes from the school uniforms to the styling of the individual characters pop against the setting.
- Pugsley. Played by Isaac Ordonez, Pugsley did an excellent job of fading into the background yet adding to the comic relief and the family dynamic all at the same time. Ordonez played Pugsley (originally Pubert in the original cartoons, a name that couldn’t be used on 1950s television) with just the right blend of seriousness and subtle “camp.”
- The Writing. In general, the dialogue pleased me. The character interactions were top knotch.
- The Addams Family Hearse. At first, I thought it was a Rolls-Royce, but then I had to smile when I realized what it was.
- The Cello. It was just cool.
- The Poe-themed boarding school. A boarding school for monsters just should have an Edgar Allen Poe theme.
- Enid. She’s adorable.
- The overt theme of unconditional inclusion.
WHAT I DIDN’T LIKE:
- MORTICIA AND GOMEZ. Catherine Zeta-Jones seemed flat as Morticia. She was okay. Luis Guzman does a superb job with the role he is given as Gomez. His acting– perfect. But this Gomez is not charming. This Gomez has rotten teeth and a weeble-wobble shape and reminds me more of the Penguin from Batman.
- NO FRENCH. Morticia does not speak French.
- Four houses of monsters. Like a direct rip-off of Harry Potter, the occult boarding school of Nevermore has four houses (werewolves, vampires, gorgons and sirens) and then those who don’t fit in one of those groups. I’m not impressed with this social construct. I personally wouldn’t have groups of monsters and would focus instead on the individuals. And the fact that we have werewolves, vampires, gorgons and sirens just seems random. And I can only think that the only reason there wasn’t a group of witches is because of… you guessed it… the success of Harry Potter (which I still believe is a rip-off of one of my favorite childhood books, The Worst Witch).
- Wednesday appears to be a psychopath. The Addams are certainly counter-cultural, but a scene toward the end of the first season dips into torture. And not the kind people consented to.
- The plot. The story itself was meh. The familiar tropes played out in the anticipated way.
That title stinks.
But I’m exhausted.
The euphoria of today is wearing off after miles of traffic, construction zones in the rain, and accident after accident at the roadside.
I got up with my 4 a.m. alarm after an uneasy night of sleep, primarily because I knew I was driving down to Susquehanna Service Dogs’ new training facility about 75 miles away. Alone, as the Teenager had clients. Which made her very unhappy because DOGS.
Took a shower. Drank some coffee. Even did some work on my novel, Road Trip, the next volume in the Fashion and Fiends series.
Went to work. Only performed about 89% despite getting the refixes. My toe was burning, my neuroma pain was back at between a 6-8 and my hip was uncomfortable, feeling like it didn’t want to bend. I didn’t want to take my Baclofen, because even though I have had success taking it in the morning… it felt like tempting fate in a bad way to take a muscle relaxer before a solo road trip on a rainy day.
I opted to wear my Kassy Boot by DV/Dolce Vita from Stitch Fix. I agonized a bit over which shoes to wear. Did I wear my work shoes so I could walk as I do in flat soled Vans? I decided on my cowboy boots because it shows how I walk in public. And I can always take my shoes off.
The drive to the facility was boring thanks to the rain. I had hoped to stop for coffee once I got my bearings near them, but I had forgotten how much nothing there is in the area around the Rt. 78/81 split.
When I arrived, a service-dog-in-training came to greet me, as a test of his interaction and focus with new people around. I was told to pet him only when he successfully remained in his “sit” after his trainer told him to “stay.”
We tried three times, but each time he stood. So we didn’t get much petting done.
I read some of my book, made some notes in my journal and willed myself not to look so red. I got very nervous when the candidate before me seemed much older than I am and had a cane. Of course, my immediate thought was, “I’m not disabled enough to be here.”
I got to meet the woman I have been working with so far, but at this stage of the process I will now be working with someone new. The interview team included a volunteer, a handler, the administrator in charge of dog training and the person who I will be partnering with for the next stages of the process.
Today allowed them to ask me questions about my condition, what I think a dog could do for me, about me in general and I got to work with an ambassador service dog. She showed me all the tasks she could do and I got to walk with her using different techniques: just a leash, a soft strap, a stiff mobility harness and a leathery mobility harness that is softer for me to hold but more snug on the dog.
They videotaped me walking, with shoes and without, with the dog and without. The dog was such a goof and a show-off. I think she knows her job is to make people at ease and happy as much as it is to show people what a dog can do. The staff and volunteers complimented my boots.
The drive down took 90 minutes, but the drive home took almost three hours. But you know what? It was an amazing experience. To work with a trained, experienced dog and get a feel for the people– paid and volunteer– that do this incredible work.
A dog is an incredible commitment, but I also see how much the dog can do and what a valuable relationship a service dog and handler team can have. I’m so glad to have had the opportunity, and if the day comes that Susquehanna Service Dogs can place a dog with me, I’d be very grateful.
I had a loaner car from Kelly Nissan so The Teenager could drive my Jetta SE 1.8tsi while her 2012 Nissan Rogue was getting some serious repairs. She’d not older enough to drive the loaner.
I was very excited to hear I was getting an Altima.
When our 2000 Saturn SL2 blew a head gasket (that my father insisted I have repaired and he later sold the car so my husband and I made a healthy profit), my husband and I found ourselves on the Young’s Volkswagen lot looking at used cars around the Fourth of July weekend. I want to say it was 2012.
I spotted her immediately. Shiny dark red with a sunroof. 2005 Nissan Altima 3.5 SE. Beige leather interior. Sunroof. Low mileage. Maybe 22,000. I want to say every car I ever bought was around $15,000, even my 2015 Jetta was no exception.
My Altima was basically the Altima with all the features of a Maxima. My daughter named her “Beauty” the moment they met. Which was a better name than the poor Saturn. The teen, as a preschooler, had named the Saturn “Herbie.”
At first I hated the new Altima. Too many buttons, lights and features that I couldn’t decipher because the user’s manual was still sealed from the factory. It also didn’t have the power of my previous Altima or my current Jetta turbo.
But it was smooth and quiet, and had unobtrusive but very noticeable blind spot alert lights. A backup camera with resolution higher than some televisions and a rear sensor that did not trust my skills to parallel park. On the highway, I discovered she may not be a racecar, but she was steady and slick and handled easily. Her “naught to zero,” as my British car expert Mike Brewer likes to say on his Wheeler Dealers programmes that I watch on Motor Trend streaming, might be nine seconds but once she gets there she keeps going. Her price starts at $25,000 the internet tells me.
The internet also told me that my 2015 turbo-charged Jetta also takes nine seconds 0-60. I didn’t think to challenge the teen to a race.
But by the time I returned her to the dealership, I had grown comfortable in her spaceship-feeling cockpit, thinking maybe I should be shooting aliens out of the sky. She was a comfortable car, in a cozy way, making me feel relaxed as I drove (until I accidentally engaged some driving assistance that made random lights that looked like colliding cars light up and I screamed while driving down country back roads in the dark, “What are you trying to tell me? Did someone hit you?”).
She felt way smaller than my previous Altima and averaged 30 miles per gallon on my day of use. She also handled tighter than my Jetta, which I believe is because the Altima has all wheel drive now.
It makes me want to drive the 2023 Nissan Z, which, as you may guess, Mr. Brewer would call the “Zed.” Car and Driver didn’t seem impressed with the latest sports car from Nissan, which makes me sad.
Meanwhile, we see what the Jetta feels like tomorrow.
Fosters kitten Jennifer Grey and tripod Louise woke me up at 2 a.m. to play “let’s compete for attention.” Now I love these two cats, and even in the middle of the night I don’t mind giving some half-asleep snuggles. But this went on for at least a half an hour as they each crept closer to me, until Louise was in a ball in my armpit and Jennifer was on my chest.
The Teenager needed to take her car to Kelly Nissan for major repairs. So she drove me to work and kept my car and Southern Candy agreed to bring me home, meet the menagerie and have dinner with us. I’d been looking forward to it. I even bought a chicken. A cute little organic chicken that was the size of a Cornish hen but a chicken nonetheless.
Work was work… I was actually doing okay and hitting my numbers. I took a Baclofen at 6 a.m. and that seemed to loosen everything. The other people stationed around me made me feel a little out-of-place, but that’s fine, especially since one of the people on my roster was delivering work and I got a refix cart. Which is the work that is easier for me to do. And most of my carts were medium, not 1X or 2X like usual. And then around 9 a.m. it started.
The internet started going down. And it looked pretty random. A station beside me. Two stations in front of me. But not me. Half a row over there. So they started having half the people fold and box and those with a working computer scan– except even then I only got about 5 boxes and still had to QC out of the cart.
At ten a.m., the powers that be at work called Voluntary Time Off. I said I would stay, as I felt good and Southern Candy usually tries not to take VTO, but her computer was down and in her department, things weren’t moving as smoothly as ours were so they were destined to run out of work. We left around 10:30, which would at least solve one problem: I would be home when Kelly Nissan called with the Teenager’s car and I would have more flexibility to get her to the dealership.
Southern Candy meets everyone. The elusive Louise makes an appearance. Foster Khloe, our Bean dog and the crazy Goffins cockatoo Nala immediately love her and the Teenager demonstrates probably a full 30 minutes of Bean dog’s tricks.
Kelly Nissan calls. The teenager’s Rogue will need another day in the Service Department. They offer her a loaner. She asks if she can drive a loaner at her age, figuring the policies are similar to rental cars. They assure her that she only has to be 21, and she’s 21….
Um, she tells them, I’m 18.
Oh, they say.
I guess they’re not used to 18-year-olds dropping off cars for $2,000 in repairs.
Kelly Nissan gave me the loaner. Now any dealership worth its salt will lend you a car better than yours to entice you to buy. And one of my dream cars is a Nissan Z. They aren’t going to lend you a Z, but I used to have a Nissan Altima with all the bells and whistles and the big 3.5 liter engine. That’s the car to which I compared all the cars I test drove when I bought my Jetta turbo. I hoped they would lend me a 2022 Rogue, which would be the same car but a decade newer than what the Teenager brought it for repairs.
They brought me a 2023 Altima. I got a little tingle when I heard Altima, but to my disappointment (but meeting my expectation), it was the base model. It handled fine, drive smoothly, felt like I was in a fighter jet cockpit instead of a car. But it had no real power. No sunroof. No heated seats. And it was grey.
They had given me a perfectly boring car.
The back-up camera has better resolution than a lot of televisions, and the warning beeps for parallel parking are annoying.
Once I return home, Southern Candy and I start the chicken. It’s 3 p.m. and the chicken should take 45 minutes to roast. Unless it’s still frozen in the middle. The chicken still has its neck. Southern Candy points this out and I try to cut it but all it does is make her laugh. She tries. She’d not getting anywhere either.\
So we ask Chef Google.
Together we de-neck the chicken. Makes me miss my vegetarian days.
Chicken in the oven, my neurologist-physiatrist calls. She’s filling out my intermittent leave paperwork and wanted my input. I mentioned I have the outside firm’s analysis of my job, and that I planned to give them to her for the upcoming accommodations paperwork. She says she’d like to have those, so I run upstairs and scan them.
I also show them to Southern Candy as we are on the same roster at work and we all technically could be assigned to do any jobs in outbound.
We check the chicken, it needs more time.
The partnership specialist at Susquehanna Service Dogs calls. They have a last minute cancellation for an in-person interview on Wednesday. Can I make it? I ask Southern Candy and the Teenager: Do I want the slot? Work prefers 48 hours notice for requested time off. And this would require a half day as the agency is 90 minutes away. And I’m not sure I have paid time left.
“How bad do you want it?” Southern Candy asks.
“Badly,” I said.
I accept the interview and email my supervisor.
We check the chicken. It needs a little more time. It’s 4 p.m.
The teenager mentions Chinese food. Southern Candy makes a yummy noise. But she tells my daughter we have chicken right here.
“It’s fine,” I said. “We can have the chicken tomorrow. Or pick on it cold.”
We order $50 in Chinese food. We eat like kings.
Then, Southern Candy and I say our goodbyes and I head to the gym. Where Andrew puts me through a core workout. I gave it everything, as I always try to do, but those side planks were murder on a belly full of Chinese food.
I went to bed exhausted– and had to type this blog entry in the morning, which I rarely do.
Great news for local fans who might find themselves in downtown Easton during the holiday season: Book & Puppet should have books from Parisian …The Success of Indies First, an appearance on the news
Tomorrow I will be attending the Lehigh Valley Author’s Event at Book & Puppet around 4 p.m.
In this post, I also start a series of reviews of books by bookstore co-owner, Andy Laties.
The first half of this post targets Lehigh Valley locals, whereas the second half offers a book review. Based on your interests, skim accordingly. If…Indies First at Book & Puppet
I woke up by my alarm at 4 a.m. yesterday, and for the first time in days, I thought I could actual get out of bed. My body has been heavy with fatigue and a steady post nasal drip. I suppose that might be from closing up the windows with a bird, a dog, and 11 cats in a house desperately in need of a vacuum.
But even so, I laid in bed until about 4:20 cuddling the FURR fosters in my bed: tripod Louise and kitten Jennifer Grey.
I drank two cups of coffee, one Supercoffee and one Dunkin Polar Peppermint.
I even wrote about 500 words on my next Fashion and Fiends novel that I have been struggling with for months.
I was stiff and my back was achy and yesterday I noticed some of that burning in my toe but I thought perhaps I could blame my shoes.
I saw the chiropractor the night prior, the amazing Nicole Jensen of Back in Line Chiropractic and Wellness Center. Nothing really seemed amiss and things were moving well.
Yesterday at the warehouse I performed 97%. So I thought… why not… let’s take one of my baclofen pills to see if looser muscles might mean less stiffness and aches. It was the first time I ever took one in the morning. I’ve taken them in the evening and slowly taken them earlier.
The pill helped. It felt like I could swing my legs again.
The medicine reminded me that I never heard back from the neurologist’s office about the appointment they needed to move and the paperwork I submitted. So I emailed. Now, the portal that allows patients to email medical staff has a strict character count. While in the newspaper business, I had a nickname: the word count goddess. This was in the pre-Twitter days when no one cared about character counts.
I composed a masterful email that addressed all my concerns succinctly, but maintained a polite air. I love this doctor and truly want to make her life as easy as possible.
I performed most of the day at 100%, by my employer’s numbers, which don’t account for our ten minute breaks. Their numbers suggest we do 16.25 units per hour, but don’t change during the hours we have break, which is twice a day. Their default calculation means the computer thinks one unit should take almost 3 minutes 40 seconds. So a ten minute break (and a small amount of time to move to and from a work station) reduces the potential productivity of that hour by about 3 units. So to compensate for that difference, if you wanted to keep every hour equal, the units per hour should be 17.
My first hour, I completed 18. My second hour I only completed 16. Then we had break, (and my neurologist had sent an encouraging email back by that point and her nurse had suggested a time for my next appointment) and I completed 5-6 in the twenty or so minutes before we had a department wide “power hour” in which I completed 19. So by the midpoint of my shift, and even when I clocked out for lunch, I was at exactly 100% with no accommodations for my disability. But by lunch, my ability to bend was decreasing.
I felt like the Tin Man in the Wizard of Oz when he begs Dorothy for oil.
I had a cheerful lunch with my friends, and went back to work, still maintaining the official numbers for 100%. Even by our last break at 1:30, I was still 100%. But I was stiff. And feeling sluggish. So for the first time ever, I took a second baclofen in a day. My doctor suggested up to 3 a day.
My toes were burning at this point, making me wonder if my pain from my two Morton’s neuromas had returned. OR if my toes were rubbing because I forgot my toe separator doo-dad. OR if my toes rubbing (because later I saw and felt the bony, protruding tender spot where it hurts) impacts my posture and triggers the neuroma(s).
If the issue continues, the neurologist wants me to call the podiatrist. I stopped by his office last week to drop off $11.32 in cash for my copay and his office was unexpectedly closed. In the old-fashioned manner, I slipped the envelope in the door.
I worked as hard as I could the remainder of the day, now trailing behind because of my ten-minute break and at 2:30 p.m., 30 minutes from quitting time, the support team brings me the “easy” work and tells me it’s a priority. I end the day one unit away from 100%. One unit.
And somewhere around 2 p.m., the neurologist had called and asked for $30 payment for the form fee for my FMLA paperwork. I apologized and said while I completely would pay the fee, I was at work and didn’t have my wallet on me and I would get back to them before the holiday. I called them at 3:10 p.m. from my car, and was added to a call back list, because the wait time was 40 minutes.
I hope including this much detail might show how difficult it is to pursue medical care and to pursue official accommodations in the workplace. Medical care itself is a labyrinth. Navigating your way to a provider who not only cares but has the knowledge to help, maintaining the patience and persistence to pay the fees and follow the paperwork, and taking responsibility for lifestyle changes that only you can make. I’m fortunate that I can do these things myself. What if my disability prevented that? Would I be treated the same way?
Just throwing that out there.
So now the happiest part of my day— hanging out with my blind friend, poet and essayist Nancy Scott.
She needed to go to the bank and she wanted to go to the Dollar Tree to check out the Christmas decorations. We had a great time roaming the aisles with me describing all the goodies. Nan fell in love with an elf.
I said to Nan, “my leg is not working.”
I meant it off-handedly but I checked my phone later. And sure enough— my walking asymmetry was way off. Normally I fall when the spike hits 10 percent. It was 50 percent.
Hopefully today will go smoother.