The Teenager and I left for a bizarre mini-round trip down to the atrium outside the Bass Pro Shop at the dying Harrisburg Mall. I say dying, because the folks at Susquehanna Service Dogs reported that they will soon have to find a new spot to do their evaluations as the mall will soon be razed, except for the Bass Pro Shop.
The mall provides an open but indoor public environment for service dog trainers, handlers and dogs themselves to work with people who may wish to pursue a service dog. These dogs are commitments, and the idea of navigating in the world with a large dog can be overwhelming.Therefore, it’s logical to let people considering a dog the opportunity to see how it feels, in public, to work with a dog.
I had to bring a support person with me today, and that was The Teenager. I worked with the trainer and the dog, Katydid, the same dog I worked with at my in-person interview in late November. The Teenager walked behind with the case manager, who asked questions about what I could use in a service animal and filmed my interactions with the dog.
I thought my right leg was being obstinate, it felt stiff and rickety. The Teenager reported that the right leg looked great, even faced the correct direction, whereas my left leg “looked like a worm on a string.”
Everyone had a great time, and I walked about 4,000 steps with my friend, Katydid, exploring the different between leash walking, strap walking and a hard harness. The hard harness makes it really easy to feel my place in the physical space and match the dog’s gait with more confidence than with the leash or the strap, but it may also be just as good to have a thicker, sturdier strap on the dog that could give the same feel as the harness and be easier for the dog to wear. And I bet over time, as the dog team works together, both the dog and the handler develop a rhythm.
The dog can be trained to counterbalance, to retrieve things, to find help, to empty the dryer, to bring your phone, to help you up, etc. Your dog can learn where your first aid kit is and to bring it when you fall and need to clean your wounds. It’s truly amazing to see these animals excitingly perform tasks, especially these ambassador dogs who will gladly work with anyone who has treats.
The Teenager and I made an adventure out of the day– stopping at Sheetz for drinks, where we discovered this Sheetz had an entire aisle of slushy machines. We loaded up on slushy and sodas, ranging from cherry Coke Zero to Mango Pepsi to Cheerwine.
The mall itself also fascinated The Teenager, with its taxidermy animals and its creepy trees in the Enchanted Forest children’s area. The creepy tree looked eerily similar to the one in The Teenager’s bedroom.
We also visited 2nd and Charles where she read The Unofficial SIMS cookbook and had to buy a new floormat for the porch, a Dungeon and Dragons mat that reads, “Roll for Initiative.” She is her father’s child.
And then on the way home we stopped at Cracker Barrel, because that’s just the tradition when this family goes on any sort of road trip. I think we had the sweetest waitress ever. And The Teenager picked out a gigantic jawbreaker and a roll of Bubble Tape bubble gum that came with a label maker emoji toy. And I picked out the butterscotch peanut butter cups which I shared with The Teen in the car.
The Teenager is on an overnight for a client, petsitting. Her dog is sleeping in her crate in the living room below my bedroom. I have Louise, the sweet foster tripod cat, sleeping in my arms. Bean, the Teenager’s dog, whimpers.
You see, I normally get up for work at 4 a.m. She knows this. I fall back to sleep and wake to barking at 5 a.m. Poor Bean thinks no one is home and she will be left to rot in the crate. So, I get up, let the dog out, and make coffee.
I struggled with my mental health yesterday. I was prone to depression, anxiety and even anger. I had to see some people whom I no longer trust, and whom I feel betrayed me. I’m stressed about some recent financial upheavals: an unexpected medical bill that I should have expected, uncertainty about heating the house and the borough announcing that the garbage service we have used for the last 20 years has changed, the rules have changed and the days have changed and the rumor is that the price has tripled– starting tomorrow.
All first world problems. Except for the relationships gone wrong. It hurts when people don’t listen to you or respect you.
I hit a new PR on the squat at the gym yesterday, 145 lbs. Everything felt like it was moving well, and I even did impressively on my hamstring curls (and my right hamstring is reminding me of that fact today.)
Our New Year’s Eve involved finally remembering to retrieve our medicines from CVS. I grabbed a couple of clearance Russell Stover Christmas hearts with three milk chocolates inside. And I used my 40% off coupon to buy a Duncan Hines EPIC Fruity Pebble Cake Kit. The Teenager was soooooo excited she baked it right away. We washed down the cake with some leftover Jewish Christmas cookies from Little Dog’s Mom. She makes incredible cookies.
Little Dog Sobaka, Little Dog’s Mom and I listened to the recent Christmas episode of This American Life, where comedian Alex Edelman discusses his first and only Christmas. It’s a great story of experiencing Christmas as an Orthodox Jew. It also looks like Little Dog’s Mom will be able to accompany The Teenager and I to the Harrisburg Mall on January 25 for my Canine Therapeutic Evaluation with Susquehanna Service Dogs.
I also made this weird little treat: I took a sprouted flat bread, spread it with vegan cashew cheddar, sprinkled it with organic parmesan and herbs de provence and drizzled it with cold-pressed extra virgin Lebanese-imported olive oil and toasted it.
But this morning, things took a turn. I texted the Teenager about a run to Dunkin on her way home. She arrived with her tea, my bagel and some hashbrowns.
“Where’s my coffee?” I asked.
But quickly it became apparent that the Teenager was doubled over in pain. I have never seen her like that. On Monday, the Teenager and her uncle came down with a fairly violence stomach bug that seems to have originated with the Christmas Eve gathering at my mother-in-law’s. The Teenager’s cousin and her family got it. My husband got it. I did not. Though I did fart heavily most of the week. My guts did churn a bit so I think I managed to fight it off.
As a consequence, the Teenager did not eat for about three days and her meals since then have been tiny but frequent. The smell of the hash browns in the Dunkin bag triggered intense pain. The Teenager nibbled a protein bar with her hash browns and laid down for a nap. I am waiting for her to come back downstairs. Here’s hoping she’s okay.
Of course, her dog became extremely distressed that The Teenager was not well. And the Teenager did not want to dog all over her in her discomfort. So, I opted to take the dog and run to Dunkin to get my missing cold brew.
“Bean,” I said, “Do you wanna go for a ride?”
The dog looked at me confused, as if saying, “did you say what I think you said?”
“Do you want to go for a ride?”
The dog leapt to her feet and ran to the front door and then the back not sure if we were going to the garage or the street. We headed into the garage. Bean hopped in the car. Dunkin made me a fresh cold brew and I bought the dog some munchkins which I fed her at every stop sign along the way home.
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.
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.
Yesterday Nancy (my blind friend, poetry editor and my sassy mentor/ partner in crime) and I were in her bank. The other local branch of this big name bank had had some sort of building emergency. That office was temporarily closed, so the customers were lining up with us. The bank was understaffed (the man in charge had a lovely amiable personality and told us all if we wanted a job he needed two tellers immediately. I turned to Nan and asked if she wanted to apply. She laughed).
We were fourth in line, with a small brown man with an accent in front of us. He overheard me tell Nan something indirectly about my weight (the fact that I had worn jewelry made me jingle and I had on heels so I was unusually tall). And I said something about finally having the mindset to make an effort even if I hadn’t lost any of my stress-induced pandemic weight.
The man in front of us softly said, “you look great” (and when we left I got cat-called so it had to be true, I suppose). A few minutes later the man mentioned that seeing Nancy reminded him of the story of Jesus healing the blind man.
Now, before I continue this story, picture us in the chaos of an old-fashioned bank building, the arched ceilings and the old mega vault. Picture the long line, socially-distanced. Picture awkwardly-gaited me and the little old lady with the white cane on my arm.
I have heard the stories of disabled people dealing with religious folks who want to pray for them or with them. And this man muttered something about blindness being a blessing. And Nan mentioned something about disability teaching lessons to those around us and reminding us to have patience.
“It’s a blessing,” the man said.
Easy for him to say. It reminded me of something I heard on a podcast interview with a martial artist who has cerebral palsy. “I can do anything anyone else can do,” he said.
I mean, it’s the crap we always hear. And we can do anything anyone else can. But we also can’t. There’a footnote to that statement no one ever told me: you can’t expect to do it the same way they do it. You won’t look like them or necessarily achieve the same things in the same order. The able-bodied will never understand how different simple tasks that come easily for others can feel impossible to us. I spent my whole life trying to do what everyone else did, they way I saw them do it. But I didn’t understand that the physics of my body is very different from anyone else’s.
My legs and arms are often covered with brushes and scratches from bumping into things. I stumble and fall. But, I haven’t had a serious fall since August 3. That’s exciting. My average since the mallet finger has been every two weeks. I’ve now made it almost three. Today, I have my follow-up with my doctor, and I had called his office when I started the application process for a mobility dog through Susquehanna Service Dogs.
I’ve blogged about this most recently here. I connected some of my earlier posts about the process and decision here.
I asked his staff if he could fill out the medical form, because if he didn’t think he was the right person I could call my neurology physiatrist. She was/is amazing but I only met her once, two months ago. I have been with my primary care physician for 14 years.
His staff checked with him and they assured me that he not only fill out the form but that he would do it at my already scheduled appointment today. I normally see my doctor twice a year, in winter for my physical and in summer to review bloodwork and health issues that may pop up during the year.
When I ruptured my tendon in April, I visited him because my entire system was thrown off balance with the injury and although the specialist had allowed me to return to work (rightfully so), my hip was in pain and I was falling all the time. He signed me out of work for a short recovery leave of about three weeks, so I could work with Andrew, my strength and fitness coach at Apex Training, my occupational therapists at The Institute for Hand and Upper Extremity Rehab, and my talented chiropractor and physical therapy guruNicole Jensen of Back in Line Chiropractic and Wellness Center.
I have documented this journey and have started writing my cerebral palsy memoir, Gravity is a Harsh Mistress with clever title by my estranged but still strange husband. Blog posts with connections to cerebral palsy are listed here.
My primary care doctor followed up with me after my specialist visit and allowed me to return to work at the end of May, even though my finger was still in a cast. We made this decision because the effort I gave Andrew had paid off and my hip was no longer bothering me. In addition, I had my first meeting with my physiatrist a few days later and I wanted to see how I felt after a week back-to-work to relay that information to her.
Anyway, point is, I haven’t seen my primary care doctor since May. He hasn’t seen my healed finger. He hasn’t heard about some of my rather dramatically majestic recent falls.
My weight today was 155, which is more than five pounds less than what it was at the gynecologist’s office last week.
I arrived early. I was in my exam room before my appointment time. My friend Gayle was bringing me her laptop so I could work on the cat book edits. I told her to put it in my car as I didn’t have time to run to her house and didn’t know how long my appointment would be. She ended up at the wrong medical practice. There are two similar St. Luke’s affiliated family practices in neighboring buildings.
I was texting her and making notes waiting for the doctor. I noticed my phone buzz again. My mom had sent a photo via text. That’s odd, I thought to myself. Mom hasn’t said much to me since the Teenager and I surprised her companion on Father’s Day. She didn’t even text me when she went to Florida to visit family. So, what was this?
I opened it.
I shouldn’t have. It was my father’s tombstone. My mother, despite having divorced more than 30 years ago, visits my father’s grave regularly. She’s grieving him, as many people are, and she is also grieving two of her brothers who died in the weeks before my father.
I couldn’t hold back tears. I have not visited my father’s grave since the funeral, and even then I did not get out of the car. I don’t see the point. The funeral had alienated me, and I didn’t feel like I “belonged,” and that’s not due to my family. But my father wasn’t there anymore. It was a corpse. And I had no need to see it formally placed in dirt. He was gone. And no ceremony will change that. Even now, I’m crying again.
Several times I regain my composure and several times I lose it, until eventually the doctor knocks on the door. So, I had to explain.
I mean, I suppose I didn’t have to, but it seemed only fair.
That meant we spent the first ten minutes of my appointment talking about boundaries, grief, and therapy. I’ve been with my psychologist even longer than I’ve been a patient of my doctor and the two of them know each other and speak so sweetly and kindly about each other.
We moved on then I think first to my recovered mallet finger. We reviewed my bloodwork. I told him I had to go get more iron, as my previous bottle had run out and I was using a different iron that didn’t seem to be working as I told Nan yesterday that I “almost bought a pair of potato chips.” Now, when you’ve had a history of iron issues and anemia, word confusion is a symptom. And I have been using wrong words in speech for at least a week. So either the iron is dipping or I should be screened for early onset dementia.
I almost bought a pair of potato chips.
I used this opportunities to ask if there were any other adjustments he wanted to make to my vitamin regimen. He suggested sticking with the 2000 ius of Vitamin D3 (which I take with calcium).
Next, we tackled the form for the service dog. Much to my relief, he thought the dog would be extremely helpful for me. And he also commended me for the work I do to take care of myself. In the evaluation for the service dog process, I was telling stories from the gym and mentioned how my ankle finally popped for my chiropractor Wednesday night, and how after my last fall I asked the Teenager to evaluate my walk, then she told Andrew this info at the gym, and he monitored my movement, until the next day I went to the chiropractor and she had to maneuver my hip back where it belonged.
She said I needed to do more single leg muscle stability work, which I then told Andrew, and I relayed to the doctor the horrible exercises Andrew made me do. And my doctor chuckled.
He once told me that he doesn’t worry about me because he knows if he tells me to do something I will do it. And I think Andrew and Chiropractor Nicole see the same commitment in me. My doctor today said this is why I am in better shape than many of his patients, despite my issues.
He handed me the completed form, which is the type of thing the office signs decry “requires 7-10 days” and payment of form fees. I am so grateful for my team, their respect and their guidance.
Meanwhile, while I am setting up my annual physical for February 2023, I see a text from Gayle. Remember Gayle? Apparently, she forgot my current car was a Volkswagen and was wandering in the parking lot looking for a silver Nissan. (My last car was a red Altima.) I didn’t have my Stitch Fix parking permit on my mirror. The car was clean because The Teenager has her own vehicle now. And there were four silver cars– none of the Nissans– in the parking lot.
She meandered around so long that a staff member came out and asked if she was sick or needed help. When I left the building, Gayle was next to my car. I had been with the doctor for an hour.
“You’re still here?” I said.
“I’ve been out here 45 minutes,” she said. “So when you replied to my text I figured I might as well stay and say ‘hi.’ What’s five more?”
“You better put in that application for a service dog.”
We hadn’t even made it half-way down our block and I already stumbled and fell. The teenager, her dog, and I had left our house at 7 p.m. on just another high-90s day. We were headed to CVS for ice cream.
The CVS is a 2,000 step walk— there and back— so we thought it would be good exercise for the whole family.
Plus, I had about $3.75 in Extra Bucks and a 40% off coupon. A pint of ice cream is $6.99 at CVS so I grabbed a whole bunch of singles and a handful of change.
The dog behaved really well on the walk, but my left foot did not— it kept twisting under me. I felt like I had to lift up my feet in exaggerated steps not to fall. Like high knees marching.
I stumbled twice on the way home but did not fall again.
The teenager made her remark about the service dog. I’ve spent a lot of time with her dog this weekend and thought… just imagine if this dog were useful.
I already did 90% of the 54-page application packet. I talked to those people I want to be my support letters (the teenager and my neighbor, as they would be my literal supports) and my references: the teenager’s father, cat foster godmother (who used to be a social worker) and my long-time therapist (whose wife is a physical therapist).
That leaves one thing: the medical evaluation. My own insecurities make it very difficult for me to ask for help. And it’s taken a long time for me to learn to speak up and out and advocate for myself.
I am nervous to ask my doctor— my family doctor of more than a decade— to do it. Part of me wants to wait until my appointment on August 19. But if he says no, that only leaves me two months to find someone else.
I think I need to call the office tomorrow and leave him a message to ask if he’d do it if I bring the paperwork August 19, or sooner if he wishes.
Again, I have doubts. What if I’m not disabled enough? I don’t want to waste anyone’s time. I don’t want to take a spot away from someone who needs a dog more than me.
But I’m struggling and I’m scared and I’m getting older. And I can do so much on my own but a dog would give me that much more.
I spent a lot of time on the application. Pretty much a whole day. What do you want the dog to do? What’s your typical day? Do you work? Do you volunteer? What are your interests and hobbies? Do you own a home? Do you have pets? Who lives with you? Do you drive? Can you handle travel? Can you take care of the dog? Are you able to train the dog?
If I can get ahold of the doctor’s office, as soon as I know someone will fill out the papers— I will tell my letter-writers and references to do their thing.
My therapist and I had a chat about it. His professional association discourages therapists from doing medical evaluations for service dog applications, but since I was asking for a reference, he was okay with that. He had no idea how many things a mobility dog could do.
He mentioned that in our current times, the emotional support animal and assistance dog phenomenon seems to be getting more and more prolific but that in my case, I’d obviously put a lot of thought into it, done my research, and found a program that could really benefit me.
Fingers crossed, I guess.
Oh, and the ice cream… it was $1.86 after my discounts. I had a $5 bill, five singles and 87 cents in my pocket. I paid exact change.
I have been trying to cook a cabbage for weeks. I envisioned fried cabbage and this fancy edamame and rice ramen I had in the cupboard from a past Hungryroot shipment.
The cabbage was bigger than my head and had a bit of mold on it, so the teenager said I couldn’t eat it. I cut a huge chunk out of the side and sautéed it anyway.
“Mom,” the teenager said, “that doesn’t solve the problem.”
I wanted cabbage. I’m the one allergic to penicillin and molds. So if I’m willing to eat it, I’ll live.
But I was not willing to feed it to Nan. I called her up to tell her the story, and I knew I’d either missed her birthday or it was coming up in the next few days and I had to ask.
I’m terrible with birthdays.
It turns out it’s today. Happy 69th, Nan! You’re still my coolest blind friend (and my only blind friend).
The teenager and I hopped in her Nissan Rogue and took Nan out to DQ for blizzards— we offered to take her for fancy ice cream but she wanted Dairy Queen.
It turned out the teenager had Avenue Q in the compact disc player and Nan had never heard it, so we listened a while and now Nan plans to look up the rest on Spotify.
Wait. What? The teenager is using discs and the old lady is using Alexa to stream music on Spotify?
In other news, I’m 85% done with my service dog application. I’m about 85% certain I want to do it. Several people have expressed support whom I did not expect.