Last week, I went to the doctor for my annual physical. The following day I went to the gynecologist for the same.
Between the two appointments, one of the medical professionals listed me as two inches shorter than my average. That led to my status as overweight being upgraded to class one obesity.
I have been struggling for months to resume exercise and return to healthy eating. I go back and forth with losing the same five pounds, based on what I choose to eat.
A lot of my issues with mobility and my heart stem from my extra weight. No doctor has said that to me, but I know based on how I feel and how my body reacts. I need to lose thirty or forty pounds.
About the same time my primary care physician quietly labeled me as obese, murmurings happened on the internet that suggested that the BMI was an imprecise and outdated model of determining health. The suggested replacement is a roundness index, which looks at how much weight people carry around their middles.
If I felt good, I wouldn’t care what they labeled me. But I don’t have the stamina I once did. And that has an impact on my activity which causes more issues.
I think as a society we should promote different body types and multiple standards of beauty, but if I know my weight causes a decrease in my quality of life, it is nothing more than denial to say that weight doesn’t matter.
I don’t know about you, but as I grow older, routines become more and more important to me– because otherwise I simply don’t squeeze all the tasks and items into my day that I think I should. That’s how things I enjoy, like updating this blog, get neglected.
For instance, I never wrote an entry about my single-shot marathon drive from Atlanta home.
But I was working with Nancy yesterday (and she managed to submit something like four poems and an essay while I was with her) and she nudged me in that subtle way. I mentioned that I had gone to the cardiologist the day prior, and that led to a discussion of the fact that most of my current writing time has been dedicated to my medical advocacy/ disability memoir.
“Good,” Nancy said. “I think that’s an important one. Because unlike so many people that write disability books, you’re a normal person.”
I had to pause for a moment and I almost laughed.
“Because so many books by disabled authors come from people with resources?”
While that statement is not 100% true– I know several disabled authors who use the Amazon platform to promote and distribute their fiction– it says something about disability-themed literature and memoir of past generations (I am Generation X and Nan is a Boomer.)
Spending some time in the Barnes & Noble database
For fun, I just searched DISABILITY on the Barnes & Noble website. The search yielded only academic titles. I searched DISABILITY FICTION and got only 22 results, mostly academic books, and one book only available in ebook, published by Draft2Digital, and clicking on the author’s link led me to believe he is an independent author who has published at least twelve titles only in ebook format. The author is also a horror filmmaker, nearing 60-years-old and appears to be white and able-bodied.
When I search DISABILITY MEMOIR, I find twenty results– many of them self-published, several by Boomers (on topics like polio, at least three of those, hey GenZ have you heard of polio? Another on surviving Tuberculosis and living in sanitariums), many on parenting, and many on learning disabilities.
MEDICAL MEMOIRS yielded more results (50 instead of 20) and the boldest words that popped from thumbnails were cancer and survival and the occasional miracle. When I entered my own condition, CEREBRAL PALSY, the search returned more than 130 results– most either children’s picture books or academic books.
Now, I know some of you are thinking, “Why is she looking at Barnes & Noble– everyone knows there are more books on Amazon.”
Barnes & Noble, as the remaining giant big-box book retailer, offers a standard on what can be considered mainstream and the minimum threshold of “wide” versus Amazon-only distribution. And Barnes & Noble has started doing some more gatekeeping as to what self-published or print-on-demand titles can appear on their web site.
Resource #1: Time
Anyone who publishes– even if self-publishing– has a certain amount of financial or support-system resources at their disposal. It might be as simple as the self-published author who solely uses Amazon has a live-in caretaker, which could be a family member or a paid staff person, which allows them the extra time to sit at their computer and write. As a person with a disability, whether that be a mobility issue, a congenital limb difference or vision and other sensory impairment or something else, it takes a lot longer to do basic tasks alone. Ever try to button a shirt alone with a broken arm? It takes longer to bathe, to cook, to eat, to use the toilet. The whole day just takes longer and takes more energy.
And that’s without considering what it takes to monitor and take medications, how often one needs to attend physical therapy appointments or doctor visits, and potential nuisances like arranging accessible transportation, buying supplies like incontinence supplies or feeding tubes, and monitoring one’s health.
Resource #2: Knowledge/connections
There is a profoundly different experience for disabled people based on socio-economic status. There is also a gap between experiences for those people who qualify for public services, those who have private resources and those who fall in the middle.
During the pandemic, I qualified for Medicaid for the first time in my life pretty much because I lost my job at the height of Covid and did not receive any unemployment because only workers displaced by Covid made it into the system. I did eventually receive unemployment, but it literally hit my bank account two days after I started my job at Stitch Fix. Because I had zero income, I qualified for food stamps and Medicaid. My Medicaid kicked in November 1, 2020 and my job at Stitch Fix started one week later and they provided health insurance on day one.
I submitted all my paperwork. My food stamps ended, but Medicaid did not, because of the pandemic. Despite me periodically sending updates reinforcing that I had private insurance, my Medicaid remained. Do you know when they canceled it? When Stitch Fix laid me off. I submitted my application to renew my Medicaid and they denied me because their system hadn’t uploaded my daughter’s prove of being a college student and I didn’t notice. The system didn’t send me a notice that said, “Hey, this item is missing.” Just denied the whole application. So, I have spent the last year as a disabled entrepreneur with a high deductible medical plan which means I recently paid $2,000 out of pocket for an MRI. It also means I am not seeing my specialists as often as I should.
Meanwhile, I know someone who recently not only qualified for Medicaid but also receives government disability payments, also an entrepreneur, who probably makes more money than I do. I have an Office of Vocational Rehab Counselor who has listed me in her highest category of disability, but in the last six months, I have received nothing actionable as support.
Access to social workers, whether professionally in a hospital or even through friends or non-profits can help make sense of what is possible, but without guidance it’s really hard. Another barrier is technology. That one might make a reader bristle, but not all technology makes life easier. Sometimes technology requires practical or financial resources to be useful. Nancy, as a blind person, has struggled with internet access. She has never owned a computer, and she has tried various ways to use the world wide web. Her Fire tablet worked well until the charger failed way too quickly. She has a Blindshell cell phone she uses on wi-fi to check her gmail account, and an Alexa device to handle music, time and reminders.
But recently, NASA discontinued its TV station, guiding viewers to use the NASA Plus app instead. Alexa does not have a skill for NASA Plus. Her Blindshell can’t open links from NASA Plus. And she can occasionally stumble upon a usable link for NASA’s videos on YouTube, but not reliably. She’s now considering a Fire Stick, but she’s considered she won’t be able to easily scroll the thumbnails to find the launches that interest her.
I mention this because the resource of knowledge and connections, many of which we consider technology-dependent, will change the disability experience. The people who will produce memoirs will have more access to knowledge and technology. Even in able-bodied households, not everyone has access to these items.
Resource #3: Money
A lot of the memoirs I have read come from households with financial resources. It could be as simple as having a stay-at-home mom who could be a caretaker. It could be as complex as a disabled person having access to expensive custom schools or having enough savings to take time off work for long treatments or training opportunities. These advantages lead to better education, better adaptability in the world and also empower the person who had these opportunities stories they can share with the world.
Not to mention many disabled authors work with specialty editors or vanity publishers to create their work and that requires cold, hard cash.
Resource #4: Support
Similar to the time resource, support covers the system that helps a person on a day-to-day or as-needed basis. The support of family, friends and caretakers contributes to a person’s time, their skill and their self-worth to lead them to write a book. That could also include a teacher or mentor. Some disabled people might need a typist, or an outside researcher, to help them with their tasks.
For disabled people who use most of their time and energy on survival items, writing a book might not be a possibility. This also covers the emotional support– I would guess that most disabled published authors are people who have been told they have a message worth sharing.
Resource #5: Past Experience
Finally, I consider past experience a resource. This may pertain more to medical memoirs versus disability memoirs, but that is my gut feeling and not fact. Most people want to read “hopeful” stories with happy endings. And therefore I wonder if memoirs that feature “miracles” or “cures” might be more appealing and accepted than chronic illness/lifelong disability books.
If an able-bodied person experiences an illness or an accident and writes a book, he or she will write with their previous experience in mine. The journey present in the story will be “before,” “accident/diagnosis,” “after,” and “end,” whether than end is death, healing, or acceptance. Stories with this framework will inadvertently compare the disability or medical part of the story to the unhindered before time, and the goal will always be to regain what was lost.
For most disabled people, the reality is learning to live with the condition and doing what is needed to prevent a decline in quality of life.
Regardless of what resources or goals a writer has when dealing with their own disability or medical situation, it’s important to remember when we read memoir that everyone’s lives have different challenges and their are many ways to deal with any situation.
Earlier this week, I got a text message from Mr. Accordion.
Mr. Accordion and I were roommates during my tenure at a certain nonprofit that suffered from toxic management. It’s funny though how life leads a person on a meandering path, and we end up gaining things from experiences that hurt us at the time. I have current clients who connected with me because of that job. I ended up at Stitch Fix because of that job. And I published my novel as a distraction when I lost that job. So many of the circumstances that led to the success of Parisian Phoenix Publishing launched from a very stressful and agonizing work environment, where I shared an office with Mr. Accordion.
Mr. Accordion retired, and he has spent the last four years at various part-time jobs and spending time with his family. I have only known him about five years, but in that time he has always had a joke to share, leads on good food, and a genuine care for other people.
And the other day he invited Eva-the-no-longer-a-teenager and I for pizza and mini-golf. And who am I to say no to pizza and mini-golf? The venue in question was Lucky Strokes mini golf and driving range and Isabella’s Pizza.
They had a strange, vintage upholstered chair in the parking lot with a “free” sign and a school bus with a giant target painted on it in the back of the driving range, if I saw correctly at 175 yards.
The no-longer-a-teenager and I arrived and ordered a medium pizza with capicola and artichokes.
And after some conversation with Mr. Accordion, Eva and I hit the golf range. Now, I did set my Apple Watch to “golf” (and Omada gave me credit for “sports”). It took us 37 minutes to play all 18 holes. (In part because the people ahead of us where having some intense discussion about his marriage and how his wife wasn’t taking the couples counseling seriously. At least, that’s what Eva heard. How she heard that without her hearing aids, I don’t know.
It looked to me like the worst first date ever. She looked disinterested with her back turned, sipping her soda. He would not shut up about himself or his wife. And every time you looked at them, he was standing over to the side with his putter over his shoulder and his ball on the other side of the green.
Immediately, Eva noticed two things:
I don’t even remotely line up the putter correctly.
I was swarmed by small harmless bee creatures.
And then while following my little pink ball around I fell up an incline and ended up crawling around the artificial turf on my hands and knees. Speaking of my knees, my knees and legs refused enough to let me get the ball out of the hole at each green.
Instead of keeping traditional score, we kept score of who landed each hole first, and who won each hole. We ended up trying, 8 holes each with two ties. None of which would have been possible without Eva’s golfing lessons. And her tendency to sometimes hit the ball so hard I feared she might have landed it on the next green.
And I think I had a hole in one, but now I don’t remember.
On the way home we stopped at The Spot for ice cream. I haven’t been to The Spot since my Stitch Fix days.
Yesterday, my friend Gayle and I embarked on an adventure. I wanted to motivate myself toward more movement and healthier living and Gayle enjoys visiting new towns via self-guided walks designed by local clubs of the American Volkssporting Association. Gayle has wanted to hit the Ephrata, Pa., walk (which is about 90 minutes away from our homes) and I love a day trip. The walk is maintained by the Susquehanna Rovers.
Gayle packed lunch. I packed sunscreen. I even tossed some electrolyte powders packets in my bag, knowing it would be a sunny summer day. I took my muscle relaxers.
Off we went.
The background
Now, as someone with a mobility disability (cerebral palsy, spastic diplegia), I suspected– or perhaps even knew– that this would end with some sort of injury or discomfort. I had hoped that having this walk, a 5K by design, would motivate me to get away from my desk and wander around the neighborhood.
That didn’t happen. I could blame the heat wave, but in reality, I doubt I would have changed my behavior even if the weather were nice.
In the end, I said to myself, “Anyone can walk a 5K.”
And in one respect, I was correct. I did it. On the other hand, it was stupid. And I’m suffering because of it. But that’s getting ahead of myself.
I wanted to use this walk to see how my movement was in a more long-term commitment. I wanted to test my breathing and my heart rate. I suspect a lot of my health issues will not resolve until I lose at least 20, if not 30, or even 35 pounds (at which point I ask myself– how did I gain this much weight so quickly?)
So this walk would help me evaluate my true status and make health-related goals.
That was my logic. Was it a tad reckless? Maybe, maybe not.
The Walk
Ephrata has a lovely main street, historic buildings and apparently monuments– none of which we saw because the 5K was mostly through residential neighborhoods. And we missed a turn somewhere and ended up shaving off about a half mile. Our time for our 2.8 mile 5K was about 31 minutes a mile, and we periodically stopped to enjoy the shade, look at weird buildings, and sometimes cuss about hills.
AVA walks are rated, and this was a 1B which means it was supposed to be easy, with sidewalks and the occasional hill. But if you looked at the “fine print,” the walk was rated “medium” for strollers and “hard” for wheelchairs. I think for the foreseeable future Gayle and I need 1A walks that are easy for wheelchairs.
So here’s my analysis of what we saw in Ephrata on the 5K:
A gnome garden. I like this tiered design of outdoor knick knacks. I’m not sure what sense it makes, but it seems like a concept the no-longer-a-Teenager would embrace.
A neighborhood egg stand, that was closed.
Your going to have to google this for yourself. “Best Kept Secrets Tour.” “Shopping, Food & Fun adventures.”
The strangest “double” homes I’ve ever seen. The walk took us through an entire neighborhood of attached, split-level homes. I own “half a double,” and some neighborhoods in my area are row homes that expand an entire block. But I have never seen neighborhoods like these. I fail to understand the logic. There are two reasons to “attach” homes– one is to lower the cost by sharing a wall, and the second is to squeeze more people into a smaller space.
These homes have the space to be detached. They are on suburban lots. So, if you are going to invest in a suburban home, why would you want (or even accept?) being attached to your neighbor. There were also attached ranch homes, with the same concept, but just without the extra stories. And some had a strange shared doorway in the middle, like a breezeway, so they were both attached and detached.
We did see a lot of great distant views. Mountains in the distance. Clear skies.
One of the first things we encountered was the Anne Brossman Sweigert Charitable Foundation, with a family sculpture out front and a sign engraved on a grave marker. (They also have not updated their website in almost 10 years according to the “grant history” tab.) Why did they place their sign on a grave marker? So it didn’t blow away? Fade?
Around the two-mile mark, we realized we had missed the turn and reached our threshold for the residential tour, and ironically, we ended up taking a street parallel to the main drag back to the hotel where the walk-box is stored.
Interlude: Early in the walk, I noticed my right leg was pulling in toward my left leg. So, minding my fitness and strength coach’s advice, I led with my knees to make sure I wouldn’t end up tripping over my own legs due to my knees facing inward. I tried stretching, to see if I could get my hips and thighs to move more outwardly, but I couldn’t come up with the right movement.
Nothing hurt, but damn everything was tight, and my legs fought me with every step.By the time we climbed the hill and stairs by the hotel, my back was starting to feel the stress. My legs didn’t want to lift. So I made it to the car and popped another muscle relaxer.
Step count: about 8,500
The Ephrata Cloister
We went to Ephrata Cloister, driving down the main drag and wondering why the walk couldn’t have shown us all these lovely local businesses and perhaps led us to a cafe where we could have rested. We had a savory-and-sweet vegan chickpea and carrot salad with a side of grapes for lunch. From there we headed into the gift shop.
At the gift shop, I found an impressive collection of wood crafts, paper folding kits for Moravian Stars, quilted cards, replacement ink for quills, Amish novels and a nice selection of Pennsylvania Dutch nonfiction books.
The no-longer-a-Teenager is mostly Pennsylvania Dutch on her father’s side. One paternal great-grandfather was Welsh, but all of her other paternal great-grandparents were Pennsylvania Dutch. Her paternal grandmother’s father spoke Pennsylvania Dutch (Leroy Buss) as his first language, learning English at the one-room schoolhouse he entered at age five. I would have loved to buy her a Pennsylvania Dutch to English dictionary or Superstitions and Folklore of the Pennsylvania Dutch, but the budget did not allow.
We visited the museum where we learned that the Cloister was a spiritual community with roots in Germany that came to Pennsylvania, just like the Quakers and the Moravians, in the early 18th century for religious freedom.** They had strict beliefs and practices, one of which was celibacy so it became impossible to keep the community alive. (The “householders” later became the German Seventh Day Baptist Church. Householders were the families on neighboring farms who supported the community and their religious beliefs without going all in on the celibacy, vegetarianism, and sleeping on a wooden block disciplines.)
We also saw a really long glass horn.
** 1720. That’s more than FIFTY YEARS before the Revolutionary War.
The tour
Gayle and I like to support local history and nonprofits, and who doesn’t love the story of a good old colonial cult. So, we embarked on the tour.
First, we watched a really information-packed but poorly acted and filmed movie. You can watch it online here. (This was where Gayle thought she lost her phone and I got a text from a client who needed me to do something later that day.) We were told the tour was 45 minutes to an hour long, depending how many questions people had, and that we should be on our way at 3 p.m., 3:15 p.m. at the latest.
Gayle was hoping the tour would send us all over the grounds walking from building to building. I was suddenly starting to hurt and could barely stand. Neither of us voiced what we were thinking to the other.
“You’ll love the tour guide,” the volunteer at the desk said. “He’s really knowledgeable and passionate.”
Our tour guide took ten minutes to get us out the door because already other members of the tour were asking stupid questions covered by the movie we had just watched. We walked out to the middle of the yard, not even a half acre away where the tour guide announced we had reached the village.
We stood outside for a long time, at first talking about architecture, then the idiots with us had to debate how old the trees might be, and whether they were “original.” I was mesmerized the whole time by a man who looked very Mennonite/new order Amish/”Dutchy.” You don’t think the Pennsylvania Dutch have certain genetic “looks,” but they do.
Now, somewhere around this time, it became difficult to know when the tour guide was telling us historical fact, and when he was expounding on his own “theories” (his word). He talked a lot about significance of numbers, how the triangle formed by the Village served as a reminder of our path to God, and the powers of the mystics. This is where I, as a journalist and a historian, started to get annoyed. He provided no proof of the sources of his ideas. (Here are some of the official lectures on the topics.)
We stood in the main living area of what became the Sister’s House. Eventually we ended up in the Meeting Room. We were *locked in* the building, so strangers who had not purchased the tour could not wander in. I know this because the Dutchy man needed to leave and he could not without interrupting the tour.
I faded in and out of the door mentally because my legs were hurting at about an eight. When we left the meeting room and entered the add-on kitchen, I was ready to fight the sweet little old ladies for a space on the small bench. My heartrate had been soaring since we started the tour (130s when standing and 110 when seated) probably in response to the pain. There was room for all of us.
Interior of the Meeting House (saal, meaning “room.”)
At this point, my plan was to sneak out of the tour when he let us out of the building and to tell Gayle to take her time as I would sit outside and read my book. But it turned out the tour was only to this building.
Our tour guide unlocked the door at 3:40 p.m.
The repercussions
By the time I went to bed, my pain levels had reached a nine. They are between a six and seven today and I’m taking it easy. I think my body has forgotten how to walk. As a person who deals with spasticity, which means my muscles in my legs never relax, I have a theory. This is the first long walk I’ve taken probably in years, certainly since I started taking muscle relaxers. It’s the first long walk I’ve taken since I started fitness training with Andrew, and even more certainly, the first I’ve taken since he had to pause our sessions several months ago. And I sit at a desk now, 8-10 hours a day, seven days a week, and walk 3,500 to 5,000 steps a day.
So, sure I overdid it.
But I still maintain that I have never moved the way I moved yesterday. I fried my adductors.
Hard to believe for several months from 2020-2021 I was a picker in the Stitch Fix warehouse where I walked miles and miles and miles every night, five days a week.
For more about this trip and some discussion of books, printing and those arts at the Cloisters, see ParisianPhoenix.com.
This year’s Greater Lehigh Valley Writers Group THE WRITE STUFF Conference came and went in a flurry of excitement and camaraderie (in the middle of Mercury retrograde to boot). I gave myself Sunday off–and swore I would stay in bed all day watching Grey’s Anatomy, which didn’t happen, in part because I started reading books and talking to my authors and associates at Parisian Phoenix Publishing about the conference.
I attended all three days of the conference, as I am president of the group, and I treated myself to a hotel room at the venue Friday night so I could stay and enjoy the social. My friend William Prystauk and I keep saying we’re going to book a hotel room and sit at our laptops all weekend, so I invited him to join me. I figured we could have a nice dinner between events and catch up.
Yes, you read that correctly. We are writers, after all, so we want to book a hotel room and hide from the world at our keyboards.
Some history… and notes for memoir.
Anyway… last year’s GLVWG conference happened not long after I was released from the hospital after the scariest series of falls in my life. (If you’d like to read more about that, you can read it here. I have to say, I was reviewing it this morning, 13 months later, and my sense of humor amazes me. This was the second fall I had last March, the first of which happened at work on the first day of Cerebral Palsy Awareness Month. That fall is memorialized here.)
(One of the sessions I attended at this year’s conference was Jordan Sonnenblick’s session on memoir writing. I have known Jordan for 20 years and I did not know he wrote memoirs, but it turns out this is a recent turn of events so then I felt better. What I find fascinating about Jordan’s memoirs is that he writes them like his middle-grade fiction, but with his as a protagonist. I bring this up because one of his techniques for recreating his past was to map the scars on his body. I finished The Boy Who Failed Show and Tell last night, and I reviewed it on Goodreads. Some people classified the book as historical fiction and slammed Jordan for “promoting toxic masculinity” — as if in 1978 there was a universe without toxic masculinity.)
Joan & Bill at work
Last year, the conference occurred during the same weekend as The Lehigh Valley Book Festival, where I had volunteered, but I was nervous to attend the event, alone, after so many medical incidents. Joan asked me to be her photography assistant and so I did. This year, Bill ended up working as her assistant since he was in the building anyway. Joan provides author headshots at the event for a $40 charge. It’s a bargain, and the photos have many versatile uses that I don’t think writers consider.
So this year’s conference had not only a great conference line-up, but many of my friends milling about as extras. And I had the naive idea that I might have time to connect with some old friends I hadn’t seen in a while and connect with some new folks. That did not happen.
A hotel with history
Bill left work a little before 5 p.m. to meet me at the hotel. My daughter had stopped by at 4 p.m. at the end of the workshop with Jonathan Maberry to have him sign her battered copy of Rot and Ruin. We are slowly collecting the whole series, as the last books of the series seem to be harder to find. We currently have books one through three of the series, and I have ordered four and five, but I’m not sure I have the Texas bits…
The Teenager with Jonathan Maberry
A bunch of conference attendees and presenters were meeting at the hotel restaurant for a light dinner before the evening events and the social. I encouraged as many as possible to line up in a big, long table that we kept adding squares to the bottom. Bill arrived in time to join us.
Now, here’s where things get very interesting from a writer’s perspective. More than a decade ago, during one of my previous incarnations as the group’s president, we used to flip-flop between the current hotel and the one by the airport. Both were mid-range hotels with plenty of space for a large keynote and enough smaller rooms for break-out sessions. As prices would go up, we would pit the two hotels against each other and the venue that gave us the best deal won.
I’ve been away from the group for almost a dozen years, and a pandemic happened which made the conference virtual only for a while, and now we are building up the GLVWG conference game again, last year with Maria V. Snyder and this year with Maberry.
The hotel though has seen better days, in part because for more than a year now the owner of the land has submitted a proposal to the township to knock down the hotel and build a warehouse. As a consequence, the maintenance on this octopus of a hotel (the floor plan has arms jutting out everywhere) has been minimal.
Jordan Sonnenblick said his wedding used the venue in 1994, and nothing has changed since then. Well, except the name. I think that hotel changes names every other year. The toilets run and/or have low water pressure. Some areas of the hotel smell like “weed and old people” as The Teenager puts it. The restaurant is small. The food is limited. The coffee is terrible. And while the staff is delightful and they keep the place clean and functioning, there were a lot of small but important mishaps probably due to being understaffed. The parking lot is always full of trucks and there’s what appears to be a much nicer Hampton Inn right next door.
But amidst all of this– Bill knew the bartender from earlier in the hotel’s history and apparently she makes good drinks. So after dinner, we stayed for a beverage and heard from a staff member that they have been told the hotel is closing for good in December 2024. We shall see.
The Social
William Prystauk, Marie Lamba, Dianna Sinovic, Jonathan Maberry, & Jordan Sonnenblick
From there, we moved down to the social. Mark Twain was kind enough to visit and I noticed a lot of people in literary cosplay.
I had a lovely time surrounded by friends and some of my favorite writers.
Jonathan Maberry at his table at the keynote luncheon
[I had intended this blog entry to be about my personal life, but I didn’t quite get there. I wanted to at least mention my OVR planning session yesterday. Better luck next time I guess.
PS–I still don’t like Grey’s Anatomy, and with every episode that passes I like Meredith Grey less and less. And I was so excited to get to Derek Shepherd’s death. But man– the whole arc of Meredith disappearing for a year to have another baby. So dumb.
And I cannot believe how you never see the kids, and Meredith never has any paid help, but yet she’s raising three kids as a single mom. And Alex just sells her her house back because it’s important to her to be at home and not in her family house.
Meredith is a spoiled, entitled brat who thanks to her past traumas believes she can behave however she wants and rules don’t apply to her.]
I have been staring at this blank screen for two days– staring at nothing but a title. Yes, the one you see up there.
As many of you already know I am a perpetual fall risk.
I have been trying for about two years to study and track when I fall. I have monitored the effects of my blood pressure, my allergies and even sodium, and now upon looking at the fall data from my Apple Watch I suspect hormones and the full moon may have an impact. Like the ocean and the tides, I suppose.
Sunporch as a cat haven
It has been almost a year since I bought this Apple Watch and it has been a year, a week and a couple days since I was last discharged from the hospital– my first ever hospitalization for a fall.
On Sunday, I went out to my sunporch, and a cat had vomited on one of my new chairs so I went to clean it. And after scrubbing the cat vomit out of the chair, I went to throw it into the garbage can that we keep on the porch as part of our package opening station.
Now, this is where I understand but I don’t understand. I knew and saw that the metal supports for one of the dog’s place-stay platforms were in front of the garbage can. Somehow, I caught my foot on it (Can we blame cerebral palsy or could it have happened to anyone?) and I tripped. Unable to catch my balance, I fell.
Sunporch last Christmas
I landed with my hands in fists against my sternum, as if giving CPR to myself. I landed on a large block of stone that forms the step to my front door. The edge of the stone block hit underneath my breasts at the spot where a bra band should be, but I was in my pajamas.
I knocked my elbow pretty badly (it’s bruised and bumpy) and I cut my leg and bruised my foot. But that blow to my chest– my full body weight– knocked the wind out of me. I walked into the house slowly and somehow ended up on the floor curled up against the dishwasher crying in pain as I pulled up my pajamas to see if I had any visible damage.
I did not.
But it hurt. It left my nerves shaken as these falls often do and it was VERY uncomfortable to sleep that night. I woke up in the morning curled up on my side so I took that as a good sign. It hurt mildly to stretch my arms or cough or laugh, but all-in-all I felt okay.
Today, I woke up feeling worse. I put on a workout top that supports everything so the weight of my breasts doesn’t add more discomfort. But it definitely hurts worse. And walking is uncomfortable. Walking fast enough and long enough to increase my breathing often makes me stop and wait.
On top of all that, I got on a scale today. I’ve gained another 10 pounds. I wish I could say I didn’t know how that was possible. But I know. I can’t believe I’ve gained another 10 pounds in about three weeks.
So I went back to calorie counting today. And more importantly nutrient and macro “counting.”
Hopefully tomorrow will be less painful– because I have a job interview for a little something that might fit nicely into my life.
Yesterday, I visited my primary care physician. He was thrilled because my blood pressure has stayed at 100-110/70 for the last six months. I am disappointed that my weight has not budged.
Around the last snow storm, I noticed my sinus troubles got so bad that only a day of Sudafed would stop my sneezing (see more here or via the publishing company’s Substack newsletter here) and that since then the mild lightheadness and congestion have not abated. And since I took a flying leap out the warehouse door March 1, 2023 and following that with stair acrobatics at home March 13, I had to ask my doctor– could my sinuses be contributing to my fall risk more than we realize?
So, he changed up my allergy medicine to move me from OTC remedies to prescription medication.
I also mentioned that my heart rate has been stable, even when I have no caffeine or overindulge in the stuff, and that salt has a strong effect on my heart and my weight. But I was no closer to keeping my heart rate under control first thing in the morning.
He asked me to tweak my beta blocker routine to take it before I get out of bed in the morning. And to be completely attentive to it at night. For a month, I am to take both half-pill doses as close to 7 o’clock as possible to see if that prevents my heart rate from jumping from 60 to 80 when I sit up, and then from having another jump from 80 to 100 when I stand. If that balances out my heart rate, he may move me to an extended release medication to maintain my heart rate. Especially since I have a small aneurysm in my brain.
The new allergy medicine he put me on– shifting me from Zyrtec and Flonase to prescription strength Claritin and Nasonex– was ready at my pharmacy by dinner time last night.
“It’s a preferred medication of your insurance,” my doctor said, “so it shouldn’t cost you too much.”
So, the teenager and I took the dog on a walk to CVS this morning where the generics of these two medications, for a one-month supply, cost $93. I know my Zyrtec and Flonase probably cost similar– but I never pay full-price. I use coupons and extra bucks and buy the generic, and on top of all that buy the twin pack and split it with my friend Nancy.
We walk home, and I don’t really complain about the price because I need to know if sinuses are increasing my fall risk and I want to know if I can reduce that risk so the investment is worth it.
On the way home, the dog was frolicking on a small hill, and she came trotting down to catch up with the teenager. She misjudged or maybe lost her footing and raced down the hill right at me, hit me in the legs and sent me flying. I landed on the sidewalk. My knee has a hearty scrape, my hands are sore, and my nervous system is done for the day.
It’s been an emotionally hard week– in the anxiety-inducing way. Not in a bog panic attack way, but in the quiet worry eating you up inside way.
Tomorrow is Friday and out of my five goals I set for this week: I achieved one, ignored one, did the bare minimum on another, devoted 90% of my attention to the one and the final… Somehow, I forgot and thought I would do it tomorrow all at the same time.
So, I think tomorrow morning I’ll head over to Panera, have a good cup of coffee and force myself to do an hour of work on the project that I’ve been procrastinating and two hours-ish on the one I could have done more on.
I went grocery shopping yesterday. It’s probably not what everyday people consider grocery shopping but I went to Grocery Outlet and used their $5 off a $25 order coupon on $50 worth of groceries, half of which were for the Teenager who now has an ear infection after attending her first college fraternity party Friday night.
I snapped this photo while I was there because Stitch Fix always had these cookies in the breakroom and I got my trainer Andrew kind of hooked on them.
It felt good to at least get a few things into the house.
When I arrived home, I got the auto insurance bill last night and was shocked to learn my premium had gone up another 400– so that now for The Teenager and I it would cost $3785 for six months of car insurance.
This morning I had to call my former insurance carrier and see if they could beat the rate from my current one and they dropped it to less than half of what it was, though I took an increase in homeowners to do it but I now have better coverage. But that was a relief.
I also got a letter last night from OVR– the state Office of Vocational Services– confirming that I did indeed qualify for services and that I was classified as “most significantly disabled.” That’s merely a classification among the disabled people applying for service, which are also people looking for help with finding a job, receiving training or acquiring assistive technology. So, it’s a category within another specific category in a way.
But there’s a certain dehumanizing that happens with paperwork and services– and it doesn’t matter whether you are applying for a job, for disability-related services or care, or for food stamps. Just like in grant-writing, people and programs and outcomes are reduced to statistics and outcomes. Things that are measurable. Not the personalities or the feel-goodedness.
But then I look back to that photo of the cookies in Grocery Outlet and I can’t help but smile, because these are the moments of life that seem magical.
I didn’t realize– or perhaps deep down inside I did– that I did not write in this blog at all in the month of January. I have written in the Parisian Phoenix blog, on my Substack, for the Lehigh Valley Armchair Substack, for Kiss and Tell magazine, for press releases and social media…
But not here.
I have spent much time applying for jobs, going on job interviews, and following up with second interviews, and working with my authors at our small publishing company, attending networking events, meeting with other writers and professionals, and grocery shopping at discount retailers like Grocery Outlet and the Dollar Tree.
(Grocery budget has been $25/week, but this week I splurged and bought a baker’s dozen bagels for $9.50 at Panera because they have a sale on Tuesday, and I used my CVS coupons and their sales to buy 2 boxes of KIND breakfast bars, a box of Grape Nuts and a box of Cocoa Krispies for $13.)
My personal favorite cheap meal this month has been these gnocchi from the Dollar Tree, served with a cream sauce I made with butter, lemon, and some artichoke hearts (using the oil they were marinated in). The artichoke hearts and the Barber Foods Chicken Stuffed with Broccoli and Cheese came from Grocery Outlet. The whole meal cost me about $3 per serving. And I used up some half and half that was on its last leg.
If it weren’t for car insurance for the teen and heat (I’ve been keeping the house at a balmy 60 degrees since I had to pay for $600 in furnace repairs in December), I have enough clients to keep me afloat indefinitely even after unemployment runs out in about six weeks. But the uncertainty of it all is hard. My biggest faux pas since my lay off was dropping the oil cap into the engine compartment of my car while topping off my fluids before a winter storm.
Luckily, good old Southern Candy and her son came to my aid and he fished it out for me– took him 45 minutes and the promise of the $50 cash I had in my wallet. I could hear my Dad laughing the entire time. I swear he’s been playing practical jokes on me from the afterlife with all of these little mechanical problems.
Like he’s checking to make sure I can take care of myself.
Sometimes, Daddy, I don’t know.
We had two snowstorms in January. During one of which, the first actually, one of the Teenager’s college friends spent the night. (Photo: Here they are at about 10 p.m. having a snowball fight with one of our neighbors, a high school friend of the Teen.) The College Friend hails from Los Angeles, so this was her first snow. And we bundled her up in home-knit hats and gloves and sent her out to shovel and play in my snow boots. Because Lord knows I am not going out in that if I don’t have to.
I drove over to the Bizzy Hizzy, the now nearly empty Stitch Fix warehouse, to show my daughter the old Freestyle and Pick carts that had been set out for the trash. The carts are laminated, corrugated cardboard so I imagined they deflated pretty badly in all the rain. I explained to her how we used to pick, and showed her the pencil cans we used to hold our water bottles and the heavy-duty page protectors that held the pack slips after installation of the Big Ass Fans blew them out of the carts. Three years, evaporated and erased.
I’m still working out with Andrew at Apex Training and meeting my strength goals even if I am failing at my weight goals. The Teen says I need to be more body-positive, but I know I am regularly showing more than 500 garbage calories into my body for the emotional sensation of it. And I also know that as someone with heart and mobility issues, being overweight is not helping.
In good news though, because I share so much about my journal both as someone with cerebral palsy and someone who finds strength training cool and empowering, several other members of my gym are now setting strength goals and strength training into their routines.
While visiting Nan the other day I got to meet a really cute dog. She’s a French sheep dog. Nan and her owner both told me her breed and now I don’t remember. I asked Siri and she suggested a Wheaten Terrier or a Goldendoodle and both of those are wrong. So, I googled French sheep dog breeds and it suggested a few and I immediately recognized the word “Briard.” And it is indeed a dog that would get stuck in briars.
And last week, the Echo City guys and I went out to Pints & Pies for burgers for the guys and pizza for me. It was a very tasty pizza. I have been dreaming of it and the cold Yuengling draft I had ever since.
Today I had a lovely day with the chiropractor, then the dentist (then an iced coffee at Panera) and email exchanges with my OVR counselor.
So this will be a discussion of health, disability and my job search. I’m at the midpoint of my unemployment benefits and I’m freaking out a little.
Let’s back up…
I have only been visiting my beloved chiropractor (who used to be a physical therapist) Nicole Jenson of Back in Line Chiropractic and Wellness Center every three weeks or so, in part because without the physical labor of my warehouse job and without any complications in my gait I have not needed her. (And that’s kind of great because I also have terrible health insurance right now and no job.)
But today I went to see her, and she was very relieved to hear that my condition has been good and I have not had a fall since Sept. 30. And this was my second visit in a row with no symptoms to report. She was also very impressed with my progress with my fitness and strength coach Andrew at Apex Training. He has been pushing me hard with the weights and the core exercises all because of some pre-New Year’s resolutions we made at the gym.
Get weight under 150 (oh, how I was so close and failed so hard. I got down to 156 and stress ate my way to a new high)
Bench press 100 pounds (and I’m at 95 with more than a week to go)
Squat 150 pounds (Andrew sneaked this one in, and I have no idea if I’m near it)
Plank for 2 minutes (personal best currently at 1:10)
A dear friend pointed out that some of my exercise-induced asthma symptoms might actually be connected to caffeine intake, and Nicole definitely concurred that I needed to watch that also because of my balance issues.
And I’m still doing really well with balance and walking thanks to Andrew’s “lead with the knees” guidance.
After leaving Nicole’s, I headed to my six-month check up at the dentist. My dentist recently sold her practice– and she’s been my dentist for almost 35 years– but luckily the new dentist seems personable, smart and efficient. The staff complimented me on taking care of my beautiful teeth, to which I laughed and said, “really, let’s thank genetics because my dental habits are not what they once were.”
Then, at 1 p.m., I grabbed a KIND breakfast bar out of my bag for breakfast and headed through the Panera drive-through for an iced coffee. They offered a $3 per month subscription to their unlimited sip club for three months, and I love Panera’s iced coffee. So I treated myself. I had a meeting at Panera with the Echo City Team on Friday and I subscribed Friday a.m. I have since gone two more times.
By the time I got home, I had an email waiting from my OVR counselor. I decided that since I have some disability-related concerns about finding the right job for my next move, I would apply for assistance from the Office of Vocational Rehab. That way, the state knows I am doing everything I can to find a job. I spoke with my counselor on the phone yesterday, and had her chuckling. She said I am not her typical client, and in a way, it sounded like she was intrigued by seeing what she could do for me.
I compiled all the initial paperwork, and gave her another round today based on her subsequent requests. She’s had some interesting ideas on what her office might be able to do.
Then tonight at the gym, I was doing dumbbell rows with a 40-pound dumbbell and doing incline presses with a 35-pound dumbbell in each hand.
Angel Ackerman 