I am determined this year to explore new Christmas traditions, so when my Jewish neighbor invited me to deliver Christmas cookies to her deceased family members in the cemetery I said sure. And even though it’s 9 degrees outside (yes, that’s Farenheit), I had a great time.
The neighbor in question is “Little Dog’s Mom,” who made a reservation for my dear Sobaka to visit in April. This is exciting! We always love to have the Morkie (maltese-yorkie) come to spend the weekend. She’s such a fun little dog. And total side note, speaking of dogs, I have been scheduled for my Canine Therapeutic Evaluation with Susquehanna Service Dogs on January 25.
This means The Teenager and I, because you must bring at least one support person, are heading to Harrisburg Mall to work with a service dog. It’s a test to see if the dog helps me or provides a challenge. And also gauges how I will interact with a service dog in public.
The three of us— Little Dog’s Mom, myself and The Teenager— bundled up and piled into Little Dog’s Mom’s car for the ride to nearby Easton Cemetery.
Parents and SisterAunt and Uncle
Little Dog’s Mom carefully explained each cookie, and lined them up nicely, while explaining that the squirrels and other animals would get a nice treat.
She tried to give everyone their favorites, and having lost my father last Christmas— which to me still qualifies as “just last Christmas”— it touched me to commune with relatives who have left this Earth even if they aren’t mine.
The outing had some levity after that as Little Dog’s Mom told us about a flamingo Christmas sweatshirt she had contemplated buying with her 40% off coupon at CVS.
We stopped to look at it, and The Teenager surprised her by buying it for her with our 40% off coupon. Then Little Dog’s Mom let me use her 40% off coupon to buy one for us.
To thank us, Little Dog’s Mom took us to McDonald’s for diet cokes.
I have faced challenges recently unlike the previous difficult times in my life. I no longer live with my husband. My father passed away a year ago this past Thursday. I don’t hear much from members of my family. The health issues that come from aging with a chronic condition like cerebral palsy, while my prognosis is static, present their own difficulties. My cerebral palsy will never change, or get worse, but the complications from having spastic muscles, scissoring legs, years of toe walking and leg bones that don’t sit where leg bones were designed to sit are very real.
This week, for many reasons ranging from family stress to communication difficulties and new and old volunteer commitments, pressed my mental health beyond the point I like to go. I watched a lot of TV.
I also spent much time cuddled into my new Stitch Fix zipper hoodie. But I did peel it off to wash it today, and put it right back on my body.
And my curls came out nicely today. Thank you, curls.
Television viewing
I caught up on The Good Doctor (and while YES! Audrey Lim decided to accept her disability rather than go through a risky surgery, at the midseason episode now the team decides she has recovered some movement on her own and a new less risky surgical plan might restore her mobility. Even her new boyfriend in a wheelchair says she has to do it, and he proposes, to prove to her he’s there whether she can walk or not. The episode ends with her in surgery. If the surgery succeeds, I will be pissed. Will they then feature an interabled relationship? Why must she walk again? Why can’t we have an able-bodied fancy surgeon become a wheelchair user and excel at it? It’s ridiculous that mainstream television starts to show an able-bodied person accepting a serious disability and then again reverts to the idea that she must walk again. And disabled people know, no one complains louder, no one takes adjusting harder than an able-bodied person suddenly rendered less able.)
Wow. I didn’t expect that tangent.
With that caught up, I tried Little Women: LA and a few episodes of Little Women: Atlanta. I learned some of the varieties of dwarfism, and was forced to thing about discrimination in hiring, but as with most reality series, the focus seemed to be on drama. The Atlanta spin-off really heightened the drama. Within two episodes, we had a pregnancy with an indifferent father and jealousy and cat-fights in the clubs. Because if you use Little Women: Atlanta as a source (which I would not) apparently stripping is a great way to make a living and still collect your disability checks. I was not born with that kind of disability.
I heard a podcast featuring Randall Park and thought I would try his Netflix series, Blockbuster. That was also a disappointment. The humor fell flat for me, and I struggled with the concept. There is one Blockbuster video store still in existence, in Bend, Oregon, and USA Today wrote an article comparing the fictional last Blockbuster and the real one and honestly that just confused me more.
So, I went for Hoarders season one on Hulu. It’s amazing after having binge-watched later seasons during previous times of emotional crisis to see how unpolished the initial season is. You can see the crew determining what works and what doesn’t. The cinematography is more dramatic, but the professional only have two days to clean massive hoards and they slowly tack on more time.
At this point, I renewed my Motor Trend streaming service and will stick with Mike Brewer and Marc “Elvis” Priestley on Wheeler Dealers.
Rocking New Boots
I finally got to wear my new Marc Fisher over-the-knee boots! The Teenager worried about me leaving the house in higher-than-usual heels. They were so much fun to wear and didn’t feel any more uncomfortable than other boots.
I left my house around noon. I had promised to bring Maryann some books as her tavern is featured on the cover of The Death of Big Butch. I delivered her copies, visited for a moment (but not as long as I thought I would because the traffic and road closures in downtown Easton made it impossible to drive the three miles to her. It took FORTY minutes.), and heading for my lunch with Bill Prystauk, the author of the Kink Noir series and a long-time writing friend.
We had a lovely meal at Gap Diner in Wind Gap, Pa., a midpoint we select between his location in Stroudsburg and mine in Easton. He had a spinach and feta omelet where the rye toast had this perfect dark line around the edge but the bread remained flexible. The potatoes were also picture perfect. They had this crisp outside and looked soft on the other side. I had pepperpot soup and the buffalo chicken Caesar salad. I was a tiny tiny bit disappointed that the chicken was chicken fingers cut into bite sized pieces but honestly, the beauty of the shredded romaine and its luscious green color won me over.
It was a good eating day as the Teenager brought home fresh bagels from the bagel deli and I had had a salt bagel with piles of kale and spinach and hummus for breakfast, an iced coffee for an afternoon treat, and a dinner of heaps of vegetables (kale, squash, potatoes, sweet potatoes, cauliflower and zucchini), a vegan chicken tender and a token amount of pork.
Much better than yesterday when I ate a double steakhouse cheeseburger from DQ, cheese curds, pretzel sticks with queso and a blizzard (snickers/brownie) so large in came in a medium soda cup.
Visiting her Ladyship Maxine
From Wind Gap, I traveled out to Point Phillip through some scenic roads to visit photographer Joan and deliver her copies of Big Butch, which apparently I would trade for celery and pears. Joan and I are often trading edibles.
I met the younger stepson, the grandson, and even got to pet the adorable Maxine, a striking cat of great renown. As soon as she heard that I was the one who alerted her people to the existence of Tiki Cat cat food with shrimp, she sniffed and rubbed against my boots providing me with the ultimate blessing.
And Joan gave The Teenager, myself and her own self a Yule present: a game called Ransom Notes, basically Cards against Humanity but with magnetic word stickers. The Teenager cannot wait to play.
All in all, I think I put 50 miles on the car.
I received a phone call from a journalist trying to convince his editor to write a story on Big Butch. And I participated in a speaker phone call with The Teenager and her grandmother (my mother-in-law). She revealed that she would be having fried chicken and potato salad among the offerings on Christmas Eve so I may now have a social obligation that night. I love my mother-in-law’s fried chicken and potato salad.
I ran out of juice yesterday. Fatigue, lack of good sleep, adrenaline from publishing Larry Sceurman’s The Death of Big Butch (see a post by Larry on the Parisian Phoenix website today, click here), anxiousness regarding doctors’ appointments and my service dog application, the toll of my various foot and leg issues, and the excitement of my traveling companion, M, coming to visit all caught up with me.
Let’s start with a joke. Because it’s Monday. And we can all use a laugh. And this is clever.
What’s the worst thing you can read in Braille?
Emma Tracey, the Blind Co-Host of the BBC All Access Podcast
Before work, I went through my collection of protective toe devices. The little foam doo-dad the podiatrist gave me is looking rather worn and tatty, especially since or perhaps despite the fact that I’ve been hand-washing it.
The larger gel separators I wore over the weekend, held in place with the bunion wrap, seemed too big and the pressure hurt my toe more.
So, today I tried out the gel-line toe protector sleeve, which, according to the instructions, they make long enough for your finger. Doesn’t that make it a digit sleeve?
As instructed on the package, I held it up to my toe and then used scissors to trim it to the right size. And I wondered if the piece that remained after the cut might be large enough to use like a toe right to cover the damaged flesh and the portion of toe that rubs. This wouldn’t actually separate the toes, but it might eliminate the friction.
I decided to try it.
It fit! “Waste not, want not,” after all.
I wore my obnoxious patterned Vans sneakers (that came in one of The Teenager’s fixes. She proclaimed them hideous but I fell in love with them.). Ready for work.
We won’t talk about the fact that I struggled hard to get my socks on this morning. Sometimes my lack of mobility makes be feel like a T-Rex when I need to do stuff with my feet.
Today I handed my doctor-filled-out, official form for workplace accommodations to my supervisor.** Now my supervisor has been working in the other side of the warehouse. He will be there relatively long-term. This had me nervous, and I kept checking my work email seeking some sort of acknowledgement. None came.
Until first break, I clocked in at 100% of the Daily Minimum Expectation. But I fell behind after break. The official numbers don’t account for our 10-minute paid breaks. By official numbers, I was probably 102% or more before first break. By my numbers, I was around 98-99%. My numbers account for the breaks.
Around the halfway point of my shift, I had fallen to 97%. And then I got a phone call and Siri read me the voicemail. My examiner had called, stating that she would be denying my intermittent leave request if she did not get my form from my doctor by 5 p.m. Apparently, she’s in Arizona. Her 5 p.m. and my 5 p.m. are two different things.
I had filed for intermittent FMLA leave November 9, because the shift change I was forced to make in late October has made scheduling my doctor’s appointments nearly impossible. The company that administers the claims for my employer sent a form to my doctor, but it took nearly a week for me to find out which doctor, because I had given them the name of my primary care physician and my specialist.
The neurologist received the form November 12. (I know because the neurology office sent me a receipt and the parent hospital sent me a bill, which I had to scan the receipt and mail to the hospital over the weekend.)
My specialist couldn’t start the form until I paid the fee. For some reason, the office did not tell approach me about this until November 22. They called me while I was at work and I had to call them back once I had my wallet and was off the warehouse.
When I called them back, of course I was placed on a call-back list. I received the follow-up phone call mid-shift the next day (November 23), but luckily I had my HSA credit card in my pocket and I answered the call. I paid the $30 with funds from my HSA.
Now, the paperwork had a due date of December 9. But remember, November has a little holiday called Thanksgiving. Thanksgiving occurred on November 24 this year. My physiatry/neurology specialist called me around 1 p.m. Monday November 28. We had experienced computer problems in the warehouse and I had come home early. She spoke with me while she filled out the form and promised her nurse would fax the forms by the end of the week.
I had an appointment with my specialist December 9, so when I hadn’t heard from the examiner by the end of my work day December 8, I emailed her. I wanted to confirm she had the paperwork. And I wanted to file an absence for December 9, as I had two doctors’ appointments that day. She did not response until today, December 12, because she had been out of the office December 9.
Because she had been out of the office, she gave me the extra time to file the forms. But that extra time was four hours. I can’t even reach my specialist within four hours.
I emailed both the examiner and the neurology office, but heard from neither by the time the neurology office closed today. I guess this means my claim for a leave will be denied. I hope I can open a new one and either resubmit the prior form or ask the specialist to update the date on the form, or worst case contact my primary care physician and have him do a form and also attach the specialist form. “Luckily,” I’m still having issues with my toe which means I will probably see plenty of doctors.
Sigh. I mention this because this is what I’m obsessing over while I’m struggling to get my numbers at 100%. And I’m mentioning this because I am capable, and I can often find work-arounds other people don’t think of. But what if I were a disabled person that relied on caretakers and support staff? What if I had to rely on more people to coordinate these things? What if I had communication difficulties? It is exhausting to advocate for oneself.
Fast forward to lunch. I want to say my stats were at 96% or so. Our employer offered full day Voluntary Time Off for tomorrow and at this point I was stressed out enough to apply for it. I don’t have the money, but I also don’t feel like I have the stamina.
After lunch, my stats kept falling. They had reached 94% when someone “in charge” approached me to ask what my accommodations were because one of my peers (my sassy friend) had mentioned it to her. My supervisor had mentioned my accommodations to this person but she misinterpreted his concern to be about something else, until my sassy friend inquired about me. I think my sassy friend has become our elected leader.
After our final break, one of my teammates (who always supported me when we were on our own shift) brought me the easier work for me to do. Basically, he brought me the work already in boxes so I didn’t have to retrieve the items in the cart. I finished the day at 98.4% of DME which is amazing when you consider that about 75 minutes earlier I had been on track to complete 94%.
In addition to all of this, I never did hear back from the neurologist nor the examiner. The neurologist’s office is closed now. And when Arizona time reaches 5 p.m., my claim for intermittent leave will be denied.
And remember my toe? I had substantially less toe pain today than over the weekend, and no general foot pain.\
And I got the VTO for tomorrow.
Now the answer to our joke…
What’s the worst thing you can read in Braille? Don’t Touch!
Emma Tracey, the Blind Host of the BBC All Access Podcast
And yes, I called Nan and asked her if she had ever heard this joke. When she heard it, she nearly bust a gut.
** If you’re new here, I have diplegic cerebral palsy and have worked in a warehouse folding clothes for two years. Today they changed the system of how they measure our efficiency. We used to get our weekly numbers averaged into our performance figure but starting today, they evaluate the figure daily. Without official accommodations, I won’t meet the daily figure. My typical performance is pretty similar to last week, when I did 101%, 101%, 101%, 94%, and 100%. When you average that, my performance is 99.4%. But I miss the mark usually one day a week. Now they only give us two days to miss in a month.
Today is the day The Teenager planned to work on the downstairs bathroom, installing a new floor and finishing the paint. Our fellow cat foster has agreed to help her with this project, which is very kind of her. Originally, The Teen had off today, but at the last minute her boss added some clients to her roster.
So, as I write this, I have a belly full of pleasant Middle Eastern food after going to Allentown with M to visit the restaurant Damascus, which was once the establishment of our college peers whose parents emigrated from Syria.
My washer, dryer, toilet and floor have been removed from the downstairs bathroom and I have a burning, burning toe.
Where to begin…
I think the logical start might be our meal.
We arrived and inquired about the history of the restaurant, only to learn that the cousins who lived down the hall from me in college did indeed come from the family who founded and operated Damascus for 25 years.
We also learned that the family sold the restaurant about 7 years ago, but they still made amazing food.
I ordered the falafel sandwich and M ordered the garlic labneh, hummus and zaatar/oil.
My falafel came in a tight cylinder of pita, stuffed with crisp lettuce, hot peppers, tomato and dripping with tahini. It was lovely brown and crusty (in the good way) on the outside of the falafel, but soft and flavorful on the inside. They put a few hot peppers on, just enough to give the tahini some zing but not too many, protecting the flavor integrity of the falafel.
The hummus was smooth. The labneh creamy and rich with garlic. And as M loved to point out, the zaatar had the sumac he loves.
After our lunch, we shared some of the most photographic baklava I’ve ever seen and sipped Turkish coffee. I don’t know about you, but I love a strong Turkish coffee so rich it almost reminds one of chocolate. I didn’t add sugar, preferring to alternate bites of the succulent, picture-perfect baklava with the coffee.
The man behind us explained to his date in detail how they make baklava which involved lots of repetition of “they crush pistachios” and “they layer phyllo dough and honey” over and over and over.
M and I talked for a while sipping coffee in tiny cups and then drove to the Parkland area to see the new mosque under construction a friend had told him about when they met overseas.
On the drive home, my damn toe started burning again, so badly that I could not wait to get home and rip off my socks and remove my new toe separator. I believe I mentioned yesterday I bought each variety of toe separator available at my local CVS: the gel separator, the bunion wrap with toe separator and the gel toe protector.
My toe no longer looks inflamed, but the skin is still painfully tender and red with skin peeling all around.
I decided to wear gel separator with the bunion rap today. The gel separator felt much thicker than my normal toe separator cushion from the podiatrist. I really liked the wrap, but I really think the gel separator might have put too much pressure on the toe.
My traveling companion M is in town so I stopped very briefly to say hi. He’s staying at a hotel between Sheetz and Wawa, and he’s never been to either, so I have a Pennsylvanian duty to educate him.
His hotel has a few artisanal touches in an otherwise uninteresting and rather lackluster environment.
I received a message from M last night while I was at Barnes & Noble at the Noble Quills poetry open mic where Darrell was featuring. (See YouTube video below.)
My most-exhausting-work week ended with a few lessons. I noticed that no pair of shoes I own will alleviate the foot pain I am experiencing, though experimenting with different tape/toe separator arrangements I can select the type of pain I prefer to experience. With this in mind, I have purchase three different varieties of toe separators from CVS today. ($22 worth of merchandise that I got for $15 and I paid with my HSA debit card.) I achieved 101%, 101%, 94% and 100%.
I had my follow-up with the neurologist-physiatrist today. The Baclofen appears to help my stiffness, and though I do experience a weird jerky stiffness at the end of the day after I sit and then get up, I have not fallen and I seem to move easier. She filled out my accommodations paperwork… so hopefully I will get a share of the easier work. I offered several ideas of how to provide easy accommodations. (I shared the same letter with my doctor and Stitch Fix.) The doctor remarked that my gait had noticeably improved and I think she laughed when I told her I preferred walking in cowboy boots because of the sound and the feel. (She was wearing a mask, so I can’t be sure.) She also seemed to make a quiet noise of approval upon the mention of a service dog.
I had an hour between appointments and in that time, I hung out with The Teenager’s dog (F. Bean Barker). It was Festive Friday at work so I wore my favorite “Fleece Navidad” Christmas sweater.
I then met with my therapist. He was one of three people who served as references for my service dog application and because I mentioned I had a therapist on my medical team, they sent him a psychiatric evaluation to fill out. He wanted to review it with me, because he wasn’t sure of the weight of his role in the whole process. He was much relieved to hear that I had had the in-person interview last week (read more about that here) and that I had received the email an hour earlier stating that my home visit and canine therapeutic evaluation would be scheduled early in the new year.
So I said I would approach the paperwork as if they just wanted to know if I was stable enough to care for myself and the dog.
By the time I returned home from that appointment, the UPS man had left a special package on my doorstep. It was Larry Sceurman’s debut novella, The Death of Big Butch. And some other books from Parisian Phoenix Publishing. As is my custom, I did an unboxing on film.
The Teenager and I did some chores around the house and loaded up the car with the dog and the books and made deliveries: to the author (where books were signed) and to people anticipating the release. And, because Larry lives near a 7-Eleven, the teenager needed to stop for a Mountain Dew Slurpee.
She happens to have one of her new sweaters on from her latest fix.
And the joy of bringing Larry his books warmed my Grinchy heart.
And watching Larry decide how to sign his books, debating which of his signatures should be his author-specific nomenclature, also had an impact. I’m proud of his book. I’m proud of the product the Parisian Phoenix team made– and I’m told the effort and the quality of the book are more than Larry had ever expected to see from his stories. After all, when he pitched his stories to me, Larry had figured he had a short story anthology to offer the world.
And poor Larry, I told him he had a novella in Big Butch, and still had enough stories for the anthology, and that one of the longer anchor stories in the anthology really should be a full length novel. He’s stuck with me for a while.
Barbara gave us some cut-out cookies. Buttery, not thick not thin, with a lemony or vanilla-y hint of something so scrumptious. Roll-otts as my Pennsylvania Dutch in-laws would say.
Larry and Barbara also gave me a large bag of cat toys, which we gave to foster Khloe for right now. She’s protecting them and sleeping with them like a dragon hoarding treasure.
Maybe I’m naive or egotistical, but I really love the craft model of publishing I’m creating– including my authors in every stage of the process and creating a book we all believe in, from the author to the publisher, the artists to the designer. I never thought publishing could empower, but I’m learning so much that I never realized I wanted to explore. Talents always feel better when you share them.
Good morning. It’s Thursday morning as I write this. I have hit more than 100% at work all week. I’m exhausted and behind at chores at home which appears to be my natural state these days. On top of that, we have no caffeinated beverages in our breakroom at work due to a countertop upgrade. I think we’re all about to mutiny.
Yesterday, The Teenager did a Dunkin run for our lunch break and made me and several of my friends very happy. Today, we all pledged to bring Thermoses.
I called my podiatrist on Monday and left a message with his answering service. According to the service, they should have returned to the office Tuesday afternoon, but I have not received a call.
I have been experimenting with shoes and toe arrangements. This had yielded less pain in my foot. I have found using the toe separator between my big toe and the next toe and taping both toes together has decreased the workload of the troublesome toe. My data might be too preliminary.
The pain from the neuroma only acts up about twice a day now. When exactly depends on which shoes I wear. And what type of pain the rest of my body experiences also connects to the shoes. Do I want generic foot pain? Hip pain?
Big Butch officially releases tomorrow. The print copies have left the printer, Amazon (and probably Barnes & Noble) will accept preorders, and the ebook is live on Kindle.
My diet has been a mix of trash and veganism, thereby counteracting the recent weight loss I had when I initiated eliminating potentially inflammatory foods from my diet.
This weekend I hope to edit the Parisian Phoenix website and take kittens/cats to the adoption meet-and-greet, while the Teenager works on the downstairs bathroom project.
Tomorrow is my big appointment with my absolutely amazing neurologist/physiatrist where she will fill out my official work accommodations form. Speaking of which, the hospital just billed me a second time for the intermittent leave paperwork I asked her to file.
And I still haven’t rescheduled last week’s chiropractor appointment.
Oh… and the Teen got a fix yesterday. Unboxing here.
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 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.
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.
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.
Angel Ackerman 