A visit to Susquehanna Service Dogs for an in-person interview regarding mobility assistance

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.

Computer chaos, extracting a chicken neck, medical and service dog updates and a 2023 Nissan Altima

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.

WTF? (or ‘Another Cerebral Palsy aware day.’)

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.

The Highlight Reel of the Ides of November

It is 6:45 a.m. I went to bed around 11 p.m. last night, after a long conversation with an old friend whom I haven’t had a chance to truly connect with for years (and while we “caught up” last night as if no time had passed, it didn’t feel like the happy reconnection I thought it would), and the dog woke me up at 5 a.m.

At 6:15 a.m., after loading the dishwasher and starting laundry and trying to snuggle dog into a nap with me on the couch, I finally made coffee figuring sleep would not return.

Now, the dog is gently snoring on the other couch.

I definitely would prefer to be a cat versus a dog. The dog seems an anxious and needy creature, where the cat has an attitude and most of them act like they have their shit together.

I haven’t written much this week because my physical and emotional struggles have left me in a survival mode, and upcoming changes at work have me concerned for my long-term success at mastering my cerebral palsy and achieving work/life balance that includes leading Parisian Phoenix Publishing.

And I’m okay with these struggles, they mean I’m human and I’m alive. And I guess I want other people to know that in an age where we “social media” ourselves to death and we’re exposed to worldwide turmoil and glamour, that I’m here with you in the trenches, surviving.

So, Wednesday turned out to be a hard day. We received the official word that starting some time in December, our performance metrics will be judged daily instead of by their weekly average. And that we can miss the daily minimum two days a month. I had already turned up to work crying because of stress in my everyday life. (Which only my friend in the parking lot saw. Speaking of my friend in the parking lot… she needs a nickname as she will play a larger roll in this blog post and hopefully appear more. I think I shall call her Southern Candy, because her roots are in the Southern United States and she likes to pass out hard candy.)

Now, after my neurologist/physiatrist appointment on November 9, (see Is it Time for Botox), I filed for Intermittent Leave from work which would allow me job protection if my work missed increases due to complications from my disability or more doctor’s appointments. I now have a lot of doctor’s appointments. With recent changes at work, I seem to have triggered a couple neuromas in my right foot, which my podiatrist shot with cortisone (See The Stabby Toe and the Challenging Gait), and unbeknownst to me, as I had never had cortisone to me, this transformed my good leg into a second bad leg.

It absolutely removed all my pain, but — and this is probably why my podiatrist asked when I planned on returning to work and seemed satisfied that “tomorrow” would give me adequate time to recover– it made it impossible to control and rely on my right leg as I typically do. BUT I can also say it made me acutely aware of how I use my legs and unfairly make my right leg carry more than its share of the movement burden which is why my right hip has issues.

My left leg “scissors” causing my left knee to pretty much cross in front of my right leg when I walk (and yes, that is as awkward as it sounds) but now my right foot drags, causing my toes to curl under my foot. I have compensated for this change in walking pattern by buying cowboy boots. Not real ones, but ones we sell at work: the Kassy boot by DV by Dolce Vita. (Unboxing on YouTube here.) They allow me to hear my walk, feel my foot, and not step on my toes.

At our weekly meeting, our supervisors announce the metric change. I understand their logic. They plan workloads daily so they should measure results daily, simply put. And as this change rolls out, I’m confident the company will “do the right thing” in implementing it. I’ve been there two years, so they have investment in me as I have investment in them.

On my good days, I average 101% to 103%. But on my bad days, without some extra support that minimizes my physical struggle, I average 95%. So with the weekly average system, I’m still a “fully performing” employee. On a really bad day, which happens ironically about once or twice a month as their new system will allow, I give everything I can and sometimes only hit 85%.

Now, unlike some of my colleagues, I am also on a work roster that has changed shifts twice in the last calendar year. Yes, I have had three different work schedules in the last year: Monday to Friday, 3:30 p.m. to midnight; then Sunday to Wednesday, 6:30 a.m. to 5 p.m.; and Monday to Friday, 6:30 a.m. to 3 p.m. All very different.

Add a neurological condition to that and it’s hard to adapt. When they offered Voluntary Time Off on Wednesday, allowing us to leave three hours early, I took it. My emotional state would best be labeled as frazzled and my right hamstring had started bothering me, probably because it felt like my right leg was a useless tree trunk.

Here is the happy part. The kindness part. The part where the light shines from one person to another. Thursday morning, I get a text from Southern Candy at 5 a.m. “Stop by my car when you get to work.”

She gave me a cat figurine. A cat in frilly dress with pink bloomers, staring into a goldfish bowl that even included a goldfish.

“I know you had a hard day yesterday, and it made me think of you.”

I brought it home and placed it on one of my Parisian Phoenix bookshelves. A place I can see from my workspace at the table and/or when I’m having dinner.

To skip ahead, I’ve been thinking it’s time to record and place a request for permanent accommodations at work. By Friday morning, when one of my colleagues said he’d like to help me out with the easier work but too many people had doctor’s notes, I decided to email my supervisor. So he and I now will try to make that happen. Around the same time, my neurologist’s office called to see if they could move my December 6 appointment to December 9. The times they offered overlap with a preexisting doctor’s appointment I have.

And my intermittent leave needs to be certified by December 9. I returned their call, expressed my regret that those appointments would not work, and asked the person on the phone to please leave a message for the doctor and her nurse that my employer had sent paperwork and that I would have more paperwork and that I would gladly pay any associated fees.

I also wanted to mention I am trying to eliminate inflammatory foods from my diet, but that can wait until I see her. I am wondering if I should request to work with a dietician and get a new set of bloodwork to check not only the standards like iron and cholesterol but also vitamins like B12.

I’ve done really well not stress eating in the ten days since I’ve seen her, eating vegetarian baked beans at work yesterday while my colleagues ate piping hot pizza. My weight is slowly dropping.

I’ve eaten no junk food in the break room, choosing fruit leather and yogurt over Cool Ranch Doritos and fancy fruit snacks. I even reduced my caffeine intake. Yesterday for dinner I made thick egg sandwiches with eggplant, mozzarella and extra sharp cheddar on my favorite multigrain buns and a little chipotle mayo and avocado hot sauce. One for dinner and two to go in the freezer for work lunches this week.

Although I know my perceptions are faulty, I feel like my only success this week has been with Andrew at Apex Training. I got my gym sweatshirt, and the dog immediately jumped on me and coated it with mud so I don’t have a decent selfie… yet. But these guys at the gym have been a lifesaver. Andrew works so hard to meet my needs and come up with innovative exercises to challenge me and train my muscles to cooperate. I did a seated shoulder press this week with 30 lb dumbbells, which ignited my inner strength as my lower body becomes more useless.

I discussed my hamstring troubles and we did some balance exercise yesterday. Andrew thought I was going to stand on the balance trainer and hold a weight on one side to create instability in my stance. Then, he saw me try to stand on the ball. And we opted to practice that first.

Finally, I asked The Teenager to check on Foster Kittens Jean-Paul Sartre and Giorgio in their habitat at Petsmart. I will see them today but it brought my heart joy to see that they are doing fine.

Small goals for a rainy day

I don’t have the energy and the endurance that I once did. I can no longer drive myself to clean the house in a frenzy or bake all my bread from scratch.

I’ve gotten older.

My… constitution?… does not maintain consistency. Whereas it used to be my moods that swung, now my body’s functionality waxes and wanes.

So far today I have:

  • Folded laundry, and done another load
  • Did the hand wash dishes
  • Cleaned most of the stuff off the corner table
  • Had a glass of water, and a glass of iced tea
  • Cleaned the cat boxes in my room
  • Fed the bird
  • Vacuumed
  • And made amazing vegan flautas with Hungryroot cashew cheddar

I started Five Days at Memorial on Apple TV while I hung out with the dog.

And made great strides cuddling foster Jennifer Grey.

FURR Foster Jennifer Grey

With my walking being so unstable, I’m extra proud to announce that Friday night I squatted 135 lbs.

I started taking the Baclofen my neurologist prescribed and we’ll see if that makes walking easier.

And I’ve been sleeping 9-10 hours a night over the last few days so hopefully that also means my body is getting some recovery time.

Last but not least, I’ve been trying really hard to reduce sugars, refined carbohydrates and processed foods from my diet to test if that will lower the amount of inflammation in my body.

Is it time for Botox… in my hips?

Before I get rolling on this, my second blog entry for the day, let me show you Jennifer Grey (Dixie), the foster kitten who still doesn’t trust people much. Here she is, nestled in my sock bin and hiding from the world. And another photo of her with her brother Giorgio. Giorgio is the sweetest, quietest boy and looks gigantic next to her. But then, I think foster Jean-Paul Sartre, two months her junior, is also bigger than her.

So, I went to my specialty neurologist, the physical rehab doctor. Who laughed at my “Emotional Support Animal” t-shirt with the image of Animal from The Muppets.

She thanked me for being flexible and moving my appointment, and we started chatting. She agrees that some of my problems may have resumed with the recent shift change at work, and that Morton’s neuromas make sense after decades of toe walking.

My primary care physician had prescribed me Flexeril to try when my body felt stiff. My neurological physiatrist switched it to Baclofen and suggested I might take it up to three times a day when I feel stiff.

She was impressed when I showed off my quad stretch without leaning on anything.

But she studied my shoes and watched me walk and noted that my right leg is sliding more, that I’m not lifting off the ground like I should, and that my left leg scissoring is more pronounced. I also have less mobility in my right ankle than my left. She’s concerned about the increase in my spasticity and wants to see me again in a month.

And if my gait and spasticity doesn’t improve, I may need botox. In my hips. I’m not real keen on the idea of injecting neurotoxin into my system.

But my curls were sassy!

And then I came home and made sandwiches for my work lunches. With spinach and Hungryroot spinach artichoke dip.

Eating of the things, talking about politics, etc.

First, let’s celebrate that I have no pain today.

Second, let’s celebrate that it’s sun-shining gorgeous out.

Third, let’s celebrate that that damn race between Dr. Oz and John Fetterman is over. Talk about two bad choices.

But it sure was exciting to take my freshly-minted 18-year-old to vote and even more exciting to hear her rant about international politics after she took my out to dinner.

M and I took her to Paris, Moscow and Kazan the summer she turned 12… and while it was a whirlwind visit, she had the brain-expanding experience I hoped she would have.

Because she knows how little of the world she’s seen, but also knows how little she can trust depictions of other cultures perpetuated by the mainstream.

I often wish I could see Russia how she sees Russia. I imagine it’s similar to my view, but also very different because I have seen parts of North and East Africa and even Yemen. But just that little pop of Russia six years ago altered her perceptions forever.

If you want to read more about that trip, click here to start in the middle.

The beginning of the trip is here.

So, last night, The Teenager took me out to dinner— at Applebee’s, she loves the fiesta lime chicken— and we tried the Cheetos cheese curds and the slamming reindeer drink.

The cheese curds were strange, super greasy and very addictive.

Other foods I have taste-tested recently include the cookie butter doughnut at Dunkin which I mention here and some new flavors of delicious Blue Diamond almonds which we bought at QuickChek, video here.

I ended up calling out sick from work today— in part because of my hip and in part because I didn’t get to sleep until 3.

I see my specialist today, and my body is definitely stiff and angled but I’m not in pain. What a thing to say— but I wanted to be in pain to explain how I feel to the doctor.

I’m trying to motivate myself to give up sugar and do a 30 day elimination diet via Whole30 as I think reducing food-related inflammation in my body could go a long way. And there are others who would like to see me try medical marijuana.

A reset? The NaNo Dilemma, a podcast/YouTube interview, and some disability philosophy

I signed up for NaNoWriMo 2022, in part because deadlines and challenges and what feels impossible sometimes motivates me. But between foster cats with diarrhea, work shift changes, health issues and mood in general, I’m losing my focus and drive. I need a reset and an evaluation of my goals more than I need a push.

I have learned in the last five years or so as I’ve “come out” of the disability “closet,” is that when you have a disability or a chronic condition you have a choice: you either withdraw from life or you become tenacious and stubborn and adaptive. I think the majority of those of us with congenital issues, especially when our parents didn’t make our physical difference the center of our existence, tend to be the latter to the point of ridiculousness. We want to do things, whatever they are, and we don’t want our bodies to hinder us.

I think people who came to body differences later in life might be more prone to accept “well I just won’t do that anymore” while younger people with catastrophic injuries have the will to keep on going, and those with issues since birth learn that if they want to experience certain things they have to work harder but in reality we need to work creatively. So the 20-year-old proclaimed paralyzed as the result of a sporting accident will be more motivated to walk again than the 60-year-old who had a car accident.

But these are really complex topics to ponder and very personalized to the emotional and financial resources a person has to support them.

If you read my personal blog, you know I have diplegic spastic cerebral palsy. If you get tired of hearing me day that, I don’t care. I’m 47-years-old and like many Generation Xers out there I’m wondering how the hell that has happened so quickly. But more importantly, and I write this without judgment, I had no real medical treatment between the ages of five and twenty.

I realized– because of my job working in the warehouse at Stitch Fix of all places– that not only do I know nothing about cerebral palsy, but my medical team might not know much either. So no wonder I have a lot of unanswered questions. This week I celebrate my two year anniversary with Stitch Fix and my journey to understand my own body will be forever tied with my warehouse job with them.

Up until December 2021, I had never seen a neurologist. Until that late December visit with a neurologist, I never even had a diagnosis on my file.

And to think, now I have TWO neurologists. I guess I just want to remind everyone, and this is why writing a cerebral palsy memoir will be one of my next projects, that we tend to view our doctors as people in a hierarchy above us and we approach them for answers and with hope of relief. Instead, we need to approach them as peers with education and insight and it’s our responsibility as patients to ferry information between them and do what we can for ourselves.

I had a fall Friday night, after a week long battle with nerve pain in my foot and leg. I agreed to cortisone shots in my foot to see if that would curb the pain in my foot (and it did) but the resulting change in sensation and muscle responsiveness has made this leg (which happens to be my good one) less reliable. Throw in lack of sleep, not enough food and a cocktail and down I went. As someone with cerebral palsy, I need to remember that normal side effects for people who have proper muscle control may manifest differently in me.

So, Saturday morning, I nestled under my new Dad blanket (if you need to hear more detail on any of this about Friday click here) and planned to work on my NaNoWriMo project. Even though I had the time, and the healthy start needed to get a flow going on the project, I didn’t write a word. And I’m wondering if, already having one novel underway and past deadline, if starting another is merely destroying any chance of focus I have.

I have 4,000 words on the NaNo project, which if you don’t know is National Novel Writing Month, and I should be at 12,000 words by now. I had hoped the new project, a new idea which is nothing like anything I’ve ever written, would shake off the bad habits of an editor/publisher debating every word and allow me to write freely. That impetus would revive my ability to write quickly and without overthinking.

And strengthen writing habits.

The jury is out.

I may abandon official NaNo in favor of sticking with a strict writing schedule of rising at 4 a.m. daily before my warehouse shift and writing from 4:15 to 5:15 a.m.

The Teenager has had two overnight clients and I think at last count it had been 16 days since she slept in her own bed. When she arrived home yesterday morning, she looked at me on the couch and her dog lazily dozing and decided we both needed fresh air. So she mentioned key words: “walk,” “ride” and “window.” The dog lost her mind.

The Teenager knows how to bribe both of us.

She recently bought a new harness and long line for the dog. So we went to a small park to try it out. The park outlaws tobacco, alcohol, fireworks, drugs and golf. But dogs are okay.

There’s a cute video on YouTube of F. Bean Barker enjoying the outdoors.

And then we went to “the Window.” Which in this case meant Dunkin as it was still early and we sampled their new Cookie Butter offerings, the cold brew and the doughnut. Both were dangerously decadent. The doughnut is 370 calories so I’m hoping it sells out to the extent where I can’t get my hands on it.

I went to the park and the window in my pajamas, because it was a gloomy Saturday and I didn’t see the point of fancying myself just to hang out with the dog.

I spent a good portion of the day doing dishes and laundry and watching “Wheeler Dealer Dream Car” on Motor Trend’s streaming channel. I subscribed to Motor Trend last month so I could binge watch the Dax Shepard redo of “Top Gear America” and I may hang on to the subscription as I enjoy the content. The Teenager finds this perplexing as she knows I have no mechanical aptitude.

She classifies my car knowledge as “it looks pretty” and “it goes fast,” but I suppose my interest is similar to my fascination with haute couture sewing. I have read my haute couture sewing guide cover to cover (and yes there is such a thing) and I can’t sew to save my life.

I suppose I am a true academic. Reading and obsessing over knowledge of things I will never have the skill to do.

Then, the Teenager found “her box” on the doorstep, her third fix from Stitch Fix!!!! So we opened that bad boy.

I think The Teenager is disappointed that her box doesn’t have more flare, but the staples she receives is really improving her day to day look. As a dog walker, I am now seeing her in these Stitch Fix selections as a way that she can maintain comfort and still look put together.

If you watch the YouTube review, you’ll see more of The Teenager in what she calls her new “math teacher sweater.” It’s a keeper. It’s about 16 hours after she received it and she’s still wearing it. Stay tuned to see if I steal her shoes and keep them.

Later in the day, I had an interview with David Figueroa of David’s Cerebral Palsy and Fitness Channel. I have explored his YouTube content and I listen to his podcast. I am working hard to take charge of my aging process and I hope my message of the importance of strength training and my approach to medical advocacy resonate with people.

We talked for an hour and a half. I’ve included a link to his YouTube channel below. Let’s hope the chaos of my house wasn’t too distracting! But one disruption I welcomed was the motorcycle that passed by while I was talking about my father.

I ended up sleeping more than nine hours last night, and woke up this morning covered in cats. I hope your time-change-hour served you as well as mine did. Here’s a photo of me with the fosters, and it’s blurry because I took it without my glasses.

The celebratory and the reflective

My neighbor and the pet mama of my favorite little dog, Sobaka, had a birthday yesterday and her 700th Peleton ride. Another friend had a birthday Thursday and by happenstance I had that podiatrist appointment in her town and stopped to see her. She insisted I had to have done it on purpose, but I am terrible with birthdays. I know they are coming. I make plans days in advance but somehow, they slip by without me recognizing them.

The Teenager decided to take the bull by the horns and go shopping for our neighbor’s birthday and collected all of her favorites: Diet Coke in 20 ounce bottles, Cheez-Its and various flavors and sizes of M&M chocolates. It’s something the teenager learned from the maternal side of our family, because when my mother runs out of ideas for what to buy someone she either finds something completely ridiculous (like the whole chicken in a can that she bought my husband for Christmas one year) or stocks up on their everyday favorites. (The chicken in a can stemmed from my husband’s love of chocolate pudding in a can. Things escalated from there.) It’s like a care package, but more festive.

Now Sobaka turned eight this week so The Teenager also bought a corresponding gift bag for the dog. With extra tissue paper as Baki loves tissue paper, some treats and some little stuffed toys Baki will probably ignore because she’s too hoity toity to play.

My family has lived in this neighborhood for 20 years. Some of my neighbors have lived here their whole lives, like Little Dog’s Birthday Girl Mom and my neighbor to the right who cuts my lawn every time he cuts his. Most of my neighbors have been here as long as I have, and so we have adopted an informal mascot of the Flamingo and have the occasional girls night.

The Teenager is very excited to be old enough to attend. Last night was the Flamingo Birthday party. I was very very much looking forward to it, and very excited to share the slow progression of my service dog application with my neighbors. Very excited also to see what cocktails would be served as this particular host does not disappoint. (I ended up with a Jack Daniels canned cocktail of lemonade and honey whiskey, delicious.)

I suspected this was a recipe for disaster, but was so looking forward to relaxing with neighbors and laughing after a hard week. I had been up since 3 a.m., worked almost a full day with odd results on my metrics, went to the gym at 5 p.m. and inadvertently skipped dinner. The party started at 7, but I opted to wait for The Teenager to get home from work at 7:30 pm.

I’m skipping around chronology here, but my brain was doing this same jumps for much of the day, fatigue leaving me not quite here nor there. When I left for the gym at 4:40 — it’s about a 10 minute walk — I discovered a package from my stepmother’s business.

How honest should I be? This package struck fear into my heart. I didn’t want to open it. But I had to open it. I haven’t heard from anyone in my family for months and it seems like some people in it are getting harder to get a hold of, but I know rationally it’s a busy time of year and we’re all still recovering from the loss of our patriarch and trying to figure out how to fill that void. So of course I open the large but light box.

There is a beautiful card inside with a thoughtful inscription from my stepmother. She had a quilt made for me of my dad’s things. I cried. Because this week has been hard for me and I’ve been trying to hide just how hard and wishing I had my dad to listen and make me laugh. And not many people other than my mother and I would care, but Tuesday was my parents’ wedding anniversary.

I almost carried the bulky blanket with me to the gym because I didn’t want to put it down. Luckily, the Teenager got home in the knick of time to take it away from me.

We did a fantastic upper body workout at the gym, with some core exercises that used the legs which I very much needed. I had skipped Wednesday’s workout not knowing the source of the nerve pain. The workout pushed my arms and stretched out my extended person, who was very stiff.

Once I made it to the party, I sat by the fire pit in the yard (wearing the Teenager’s Stitch Fix mock leather jacket because I didn’t want to fight the kittens in my room to get my very stylish jean jacket) sipping my cocktail. I had rejected my first seat because the Adirondack chair made my back and hip very uncomfortable. All day my right lower back muscle had been straining oddly, and I thought maybe the cortisone shot in my foot had caused me to move my body differently.

We moved into the house for ring bologna, cheese, pretzels and chocolate-on-chocolate cake. If you are looking for me in the photo, I am second from the left with the Teenager beside me. My exhaustion kicked in high gear. The Teenager had to leave for work at 8:45 p.m., another overnight dog-owning client, so I thought it best to follow her home. Which, for the record, is across the street.

Now, I attend these parties barefoot as long as the weather allows. The Teenager and I leave the house, descend the front stairs, and reach the sidewalk. I think I took two steps on the old sidewalk and I lost my balance. Badly. Tried to regain my footing and couldn’t. I fell onto the Teenager who allowed me to ricochet off her without budging. Like a mighty tree.

And then she looked down and said, “You okay? You getting up or are you dead?”

If you don’t live with someone clumsy or someone with a condition like cerebral palsy prone to these kind of incidents, you might find that cold and cruel. It’s not. It’s practical and allows me to retain some dignity as I collect myself. My daughter knows I don’t need fuss, that I’ll let you know when it’s time to panic. It might be a little later than it should be, but eventually I’ll let you know. We might stop at the Chinese Buffet with a broken ankle, but eventually I’ll end up at Urgent Care when I need it.

I knew I stubbed my toes and my palms and my elbow was screaming, but I was praising whatever entity was watching over me that I had the heavy jacket to protect my arms. My glasses were still on my face. My face never hit the cement. We were good. I just hoped the jacket had survived.

“It will make it look cooler,” the Teenager said.

I crossed the street and took inventory. My elbow was bleeding and was very tender to the touch. My other scrapes were inconsequential. I checked my phone for clues as to what might be happening.

Holy shit.

Let me just start my saying that even with the explanations offered by Apple and Google, I don’t understand exactly how to analyze double support time, walking steadiness and walking asymmetry as recorded by my phone. I look for patterns. I know my phone does not consider me a fall risk, so I rule that algorithm-based tool out as useless for me.

I know, in general, that when my asymmetry reaches 10% or more I tend to fall. This shows two spikes, one at 53% on the walk to the gym, and another at 58% on the way to my neighbor’s house. As best I understand, this means one foot is walking faster than the other. Did the cortisone shot make it so I can’t feel my foot enough to use it? Is this foot unable to keep up with the other? This idea terrifies me.

I cleaned up as best I could and collapsed in bed struggling to get comfortable with my elbow bothering me and my back hurting worse. My brain was calculating and worrying and fighting the downward spiral.

That’s where I’m at. Except I’m cuddled on the couch in my dad blanket.