Category opinion

The fire that proved local news coverage is garbage

Angel Ackerman Leave a comment

Once upon a time, as the French would say, “il etait une fois…” I was a newspaper reporter. It’s a rare breed of professional that existed before the internet made the job so much easier, before the best news coverage was the team who did it most completely and factually, not the people who got it to their public first. So much “news” is a person standing around reporting what they see, versus doing the research to tell the story. We’ve lost sight of the full story.

This morning, as my alarm went off at 6 a.m., I read some posts on social media that read that people all over the Lehigh Valley were seeing (and posting their views of) a fire in tiny West Easton, a borough nestled among Easton proper, Wilson borough and miniscule Glendon, all part of the 18042 zip code.

I put on my glasses, as dawn threatened to break, and I thought about how bright the sky had seemed when I woke about 40 minutes before my alarm and went back to sleep. With my glasses secure on my face, I saw black smoke and orange glow billowing in the distance.

I walked to my sun porch and surveyed the scene before returning to my lap top to seek reputable news coverage. WFMZ was the only local media outlet who had any coverage of the three alarm fire (which if you know the area, it logically has to be a three alarm fire because West Easton has, depending on the website and the census attributed, about 1200 residents. That’s according to the 2010 census, and other less easily confirmed statistics credited to 2019 don’t seem too different.

So, West Easton has what is common in small communities around Pennsylvania– a volunteer fire department. With fire of this visible magnitude, even without getting the other facts: that it’s an industrial fire, that it might include propane or chemicals, it threatens multiple buildings, it is near the river, etc… (This is also a town that has disbanded and reinstated their police department to save money.) They are obviously going to get assistance from the two professional fire companies near the site.

Both Wilson Borough and Easton City have professional fire stations about a mile away.

This is an expanded version of the original news coverage produced by WFMZ, and they did a decent job. Probably because they are the only local media with a morning show, so they had bodies in the newsroom at 5 a.m. No one else locally does.

Now, I had an 8 a.m. appointment on the other end of the valley. So I called up Google maps to see what businesses were in the area reported by WFMZ. They had mentioned “large warehouse” and “Main Street and Lehigh Drive.” That’s about all the info you need to pinpoint a location in a town as small as West Easton.

The map suggest that the warehouse complex itself contains several businesses: Johnson Motor Lines, Sandt Honey, Lehigh Custom Components and Ferocity Metal. A different map shows Latro Cellular Forensics Lab and Xtreme Custom Coatings.

But the next news “update” was from the new news organization, LehighValleyNews.com, which does not have a print operation, only online, but has recycled many familiar faces from the Valley’s daily print journalism past. I found this post around 7 a.m.– two hours after the fire started– and much of the so-called reporting focused on what casual observers had posted on Facebook and other social media sites.

Speaking of social media sites… There are reports of hazmat crews, exploding propane tanks, air quality issues and, of course, parents terrified to send their kids to school both in the community where the fire is burning (Wilson Area School District) and the one next door (Easton Area School District). There were also unconfirmed reports of fire hydrant failures in West Easton (which, I can’t imagine they have many of them in that general area to start with) and rumors that firefighters had to rely on water from the Lehigh River and pumper trucks from various area fire departments.

From the bevvy of amateur drone and street photography from the fire that I have seen, I have noticed firefighters using river water on the fire, but regardless of the status of the fire hydrants, this makes sense.

Also around 7 a.m., a news helicopter appeared above my house. I assumed, correctly, that it was a news helicopter because 1. it retreated from the smoke instead of going deeper into it to fight the fire. I also guessed it was from Philadelphia, about 60 miles away, because none of our news agencies have the resources for a helicopter. Not in today’s world. It appears that original helicopter was from CBS, followed by two news helicopters for the lunch broadcast. One of which was ABC. Seriously? A fire in a small town in Northampton County warrants this much attention?

The Morning Call, who used to employ me as a print community reporter for its weekly paper and allowed me to freelance for the daily, followed with their piece by 9 a.m. Again, no real news added to the situation, they all appeared to be recycling each others’ coverage.

By the time I returned from my appointment around 9:30 a.m., the view from route 78 suggested that the fire had blanketed the county in a layer of smoke and ash, but the color had already started to pale. In the photo, taken at the route 33 exist, the plume on the right is the smoke, and one can see it traversing the nearby municipalities.

The electricity is out for a wide range of people, creating a lack of traffic lights in busy 25th Street intersections, like by the Aldi and Lidl. It looks like Freemansburg Avenue may be the dividing line for those with power versus those without. And, for the record, the average local driver seems to have forgotten that busy intersections with no signal become a four-way stop. But what I witnessed was a great big game of chicken.

I haven’t called any mayors, or police departments, or fire departments. And I didn’t attempt to get to the scene. Which are all things I would do if I were still a reporter. And I’d call council members if I had to.

And the web reveals that Latro is a lab that helps law enforcement extract data from cell phones. Sandts sells multiple varieties of local honey. According to the Federal Carrier Motor Safety Administration, Johnson carries a little bit of everything and has an unblemished safety record. Ferocity Metal’s Facebook page calls them a metal supplier, though the pictures imply the business is small and specializes in artistic, individualized pieces. Xtreme Custom Coatings is a powder coating business with many positive Google reviews.

It’s now 12:30 p.m. The helicopters have departed and the skies look normal, even if the air does have a strange ash smell to it.

Kudos to the Express-Times for putting a real reporter on the story.

Reflections on Roe vs Wade

Angel Ackerman 1 Comment

I spent 15 years of my working life as a print journalist and often I still look at the world stifling my opinions in order to present fairness, equity and facts.

It’s not dissimilar to what some of my small, family-oriented business owning friends say: that you don’t want to alienate those who trust you.

But I grow more and more disheartened by our country every day. With the Supreme Court overturning Roe vs. Wade 6 to 3, abortion will be legislated by the States.

“Conservatives” (I say that because America has a long history of not really using the terms conservative and liberal correctly) and pro-Lifers will rejoice. But I am agitated at the illogical rhetoric that our country throws out there when we, as a society, need to tackle important issues. And both sides seem ridiculously unwilling to compromise in any way. Cooperation is a dirty word to our leaders.

All of this is my opinion and here are my lamentations:

  • The logic of changing (and probably eliminating) the right to abortion is usually centered on protecting the unborn. Who is clamoring to take care of all of these unborn? What if the fetus has serious complications? What if the parents are severely impoverished or facing homelessness or addiction? What if the parents are unstable emotionally? We are a society that traditionally does not have the kindest or most efficient or even equitable healthcare, foster care or support for the disabled.
  • So, when we start talking about abortion, it’s an issue of individual rights, isn’t it? And a couple years ago when we started talking about a public health crisis— the pandemic— a lot of people who are probably very keen on pro-life sentiments also balked about the prospect of wearing a mask or mandating mRNA vaccines. Now I still don’t like mRNA technology but I understand my responsibility as the member of society and the philosophical concept of the greater good, so I got the damn “vaccine.” But the same people who say it’s a violation of personal rights and bodily autonomy to wear a mask or force a needle often think it’s perfectly okay to interfere with a woman’s bodily autonomy and health when it comes to abortion— and these same people have no concern or interest about what happens to the woman during pregnancy or to the baby upon birth.
  • This baby, this unborn life, is protected but we live in a land where guns are easily available and shootings are becoming as commonplace as Starbucks. Children can find guns and shoot other children. Teachers die in mass shooters in classrooms. Worshipping people die in churches but we value the sanctity of unborn life. To have a gun is a second amendment right. So protecting life against guns cannot by done, or so they say.
  • The big problem in this country stems from ignorance and poverty. Corporations and politicians, run by those who have financial assets, decide who has opportunity and education. Schools are woefully unequal even a mere mile apart. So while we are taught to work hard and we might achieve anything, it’s just not true.

Exploring my Disability update and Podcast review: Disability After Dark

Angel Ackerman Leave a comment

I am scheduled for a CT scan of my brain at 1:30 today. The neurologist’s office called at 9 a.m. and warned me that the insurance company has not authorized it yet.

Update: it is now 12:30 p.m. and the neurologist’s office has called and has canceled by CT scan.

I’m disappointed for two reasons: 1. I was excited to have to pay much less for my CT scan because my deductible was met (and do I dare to conspire that maybe the insurance company is dragging their feet so I have to pay for it?) and 2. I want to see my brain.

I would love to see a functional MRI of my brain but that will never happen as I have a dental implant and while that gives me a good structure for my missing tooth, the MRI would rip that metal out of my head.

Cerebral palsy is a condition that occurs when either at birth or after birth the brain doesn’t get enough oxygen and therefore, I am assuming here, dies.

But children are amazing creatures and brains rebuild and rewire as best they can.

In my case, I have hemiplegic cerebral palsy that causes symptoms in my lower body. Quadriplegic cerebral palsy effects both halves.

Cerebral palsy is a static condition, which means it doesn’t get worse or get better. Although, everyday wear and tear on the body can be exacerbated by awkward movements, which causes premature aging.

My neurologist assessed me and came up with some malfunctions, including these:

  • I have spasticity in my legs— specifically in my quads and calves. This means my muscles do not relax. Stretching the muscle groups forces them to move and is as close to relaxing as they get. Stillness often causes stiffness. So literally standing up from my bed and walking after a good nights sleep makes me feel like the Tin Man from The Wizard of Oz.
  • My feet naturally turn inward and I don’t have the range of motion I should have in my ankles. My left foot specifically likes to try and hang out under my right foot when I walk.
  • My feet don’t have the correct temperature sensitivity. This explains why I never feel my feet are cold until they are purple. And why once they are cold, it’s practically impossible to get them warm again.

I’ve been researching everything I can find on cerebral palsy and an interesting podcast is Andrew Gurza’s Disability After Dark. He originally started the podcast as a sex podcast for people with disabilities but, as a disability advocate, has interviewed a wide range of people and covered a wide range of topics. He’s also launching a sex toy line for people with disabilities.

Like any podcast, some episodes are stronger than others based on the guests, but I love his diversity in interviewing people with a broad range of experiences. And he is very honest about his life and brings that same level of truth out of those he features.

The notion of emotional support and work in American society

Angel Ackerman 1 Comment

Yesterday left me thinking a lot about the notion of friendship and emotional support. As I continue to navigate the death of my father, the gestures I see from those around me touch my broken heart in ways I never imagined possible.

And recent events, from how Stitch Fix handled the recent shift change to how they handled my father’s death, shows me that successful businesses— even American ones with an international presence and millions of clients— don’t have to be jerks.

The dog and I were sitting on the sunporch yesterday waiting for one of my crazy cat lady friends to stop by. She wanted copies of my novels to give to her sisters for Christmas (and I need more fans) and she once cared for Mars and Minerva while they were on their pet store tour.

(Speaking of Mars— he has the prettiest purr. Check it out here. And maybe adopt him. Feline Urban Rescue and Rehab.)

While Bean and I were waiting, an older man pulled up in front of my house and starting rooting around in the hatch/cargo area of his SUV. And he gets out a big bouquet of flowers.

Did someone send me flowers? Who do I know who is fancy enough to send flowers?

They came in a big glass vase with white roses and baby’s breath, and these lovely periwinkle filler flowers that I know I should know the name of because I did take high school horticulture.

I struggle to unfold the card. And I discover it’s from Stitch Fix. So I know I have a warehouse job. I know I fold clothes with everybody else. I am considered an unskilled worker, over educated for my position.

But I feel like Stitch Fix is the first company I’ve worked for to treat everyone of us like we are people, and not just interchangeable bodies in a process.

My warehouse job has paid the same amount of money as my last professional job— and removed so much stress and feelings of inadequacy from my life.

Professional positions or even common retail positions have controlled my life— constantly making it clear that “they” feel it is my privilege to work for them.

When my cat Opie had cancer I went into the computer system and requested to use some of my accrued paid time off so I could be at home after he got his leg amputated. I was working for Target at the time, about 36 hours a week so of course I didn’t qualify for medical benefits or anything because I was “part-time.” I had worked for Target for almost a decade.

They didn’t know it, but I had already accepted a professional position at a local non profit, but because of Opie’s surgery and other home circumstances, I had asked to start on the first day of the next month.

Now, after Christmas a few months prior, a guest had called the store and accused me of a racist act the day prior. This person of color had gathered all of the remaining food from the cafe, set it aside for 20 minutes, and not paid for it. She spent the entire time on the phone. I finally asked her if she was ready to pay for it and she left the store angry. Her husband called the next day. She never went to a supervisor, never said anything to me, just went home.

And the investigation determined that because I talk with my hands, I was angry and threatening with her. Despite witnesses saying the contrary. Despite almost ten years with the company.

So I got written up. This means if I did anything else wrong in the next year they could fire me. This meant I couldn’t apply for any promotions (despite the fact that my supervisor had left and I had been running my department during fourth quarter).

This is why I finally had enough and looked for a new job. And my marriage was in trouble and I needed to make more than $12 an hour.

I mention this because one of my Target friends just got fired for a similar incident where a customer was clearly out of line, and Target took their side. Even though this employee had been with the company since 2009. Just boom— fired.

And do you know what happened when I requested off? My manager denied it. I was too important to take time off.

But not important enough to pay a living wage.

But not important enough to defend when a customer was out of line.

But not important enough to provide medical insurance.

I went back to the computer and gave my two weeks notice. Except the store manager begged me not to go. And we agreed I could have the time off and I would work Saturdays to help train my new supervisor. Who turned out to have no interest in our department, ignored our breaks and wouldn’t listen to anyone but herself.

And when I called her out on it, because my peers wouldn’t do it because they needed the job, the same manager that denied my time off tried to fire me.

It didn’t work, but I never worked another day at Target, so they “got their way.”

And don’t even get me started on my experiences in “professional” employment.

If you have a job where you like going to work and your boss is a human, treasure it. It’s getting rarer.

So, yes, even though Stitch Fix is metrics driven and can be physically taxing, I have felt more like a person in their employment than I have in years.

More to come on the definition of “friend” later. So many generous acts have happened since my father’s death.

Surviving Day 2: First Day Shift with Day Shift

Angel Ackerman Leave a comment

The teenager got up a little before 6 a.m. to drive me to the Bizzy Hizzy. Her father had a car accident yesterday and she needed a ride to her therapist appointment after school.

For those who don’t know me, I am a former journalist and non-profit communications/development professional with mild cerebral palsy working at one of Stitch Fix’s warehouse. For the most part, I fold clothes for a living.

I like the concept, always have since I first read of it in Vogue a decade ago. The company itself has what I refer to as a California culture, which can be a little ridiculous but makes me feel like a person at my job in addition to being a cog in the wheel.

Why am I working at Stitch Fix instead of in a “nice professional job”?

  1. I make as much money at Stitch Fix as I did in my professional jobs, with better benefits and paid time off and proper holidays.
  2. I have less stress.
  3. Although the job can be monotonous at times, it allows me to think throughout the day. I plot my novels. I plan for my business. I guess in a way I meditate.
  4. Although with my health issues, the job can tax my body but it also keeps me more active than an office job.
  5. Until recently, the convenience of second shift hours allowed me to live my own life during the day and work at night. This allowed me to launch my publishing company, Parisian Phoenix Publishing Company. (Please consider purchasing my novels Manipulations and Courting Apparitions. New titles in other genres coming soon. Titles not by me.)

Which brings me full circle. Stitch Fix started second shift (3:30 p.m. to midnight) to split the number of workers in the warehouse during Covid. But now, thanks to the success of experiments with what was “Direct Buy” and is now Stitch Fix Freestyle, the company has transitioned from operating Monday through Friday 6 a.m. to midnight to seven days a week, 6 a.m. to 5 p.m.

From a transportation logistics standpoint it makes total sense. The business model was originally set up to provide customers with a custom-curated box of five items based on their selections on a computerized survey and the input of a personal stylist.

The idea was to combine items selected with your preferences in mind with the element of surprise, making it like receiving a gift in the mail.

But now people can also order whatever they want. And when people order it, we can ship it and have it to them within, in most cases, a day or two.

On the Monday to Friday model, which the employees loved, the person who ordered a shirt Friday at lunch time might not receive it until the following Wednesday.

I respect the company for adjusting its behavior to capitalize on current trends.

Stitch Fix has truly gone above and beyond to make the transition as comfortable as possible for second shift employees. For instance, we got priority for new shift assignments— we got to pick what shift we wanted to work. And we could request our preferred roles, too.

I wanted Sunday to Wednesday, 6 a.m. to 5 p.m. (Well, actually I wanted Wednesday to Saturday, because having Saturday night through Tuesday night off seems like a cool weekend. But my commitments made that impossible.) And I opted to stay in Women’s Outbound.

Today was our second day of this new schedule and our first day overlapping with “traditional” day shift. There were only about 35 of us, and a couple hundred of them.

Day shift is way different from Midnight Society. They have so many people that the jobs get very specific and everyone has an assigned location.

Things I normally have to do for myself, like gathering extra supplies, now get delivered to me.

And the day shift people, who, in the past were rather particular about everything and could be quite mean, now seem curious and even helpful— just like we would be on Midnight Society when someone new joined the team.

The day went just as quickly as yesterday but one BIG thing needs to be addressed.

Someone needs to tell the cleaning crew to adjust their schedules as old cleaning routine has them cleaning the ladies room at our first break and at end of day.

It made sense to clean the bathroom at 5 when we had our first evening break at 5:30, but now? It’s a little cruel.

Review: County Seat Spirits and the gems of the Silk Mill in Easton

Angel Ackerman Leave a comment

As mentioned in yesterday’s post, William Prystauk and I ventured down to Easton’s Silk Mill. We had enjoyed a lovely sushi dinner and wanted to imbibe a classy cocktail and some decadent ice cream.

Our plan was to hit County Seat Spirits and Ow Wow Cow. Neither Bill nor I had ever been inside County Seat Spirits as I had discovered them during pandemic “lockdown.” I ordered quite a few of their to go items during last summer. (More about my history with County Seat Spirits here.)

So Saturday was my first visit inside the venue and I was not disappointed, especially in the afternoon light.

I had the Mint Condition and Bill had the Pommes 76 while listening to a talented female soloist.

We later grabbed some MIXO gin lavender lemonade to go.

Bill and I meandered around the Silk Mill as he had photographed it when it was still abandoned and later he visited when it was unfinished and hosting a film festival. He marveled at the transformation as the complex came alive with various live entertainment at many of the businesses.

William D. Prystauk

At Ow Wow Cow, I enjoyed the apple caramel cashew and Bill partook in the local peach pie. I do love the early summer flavors, like strawberry rhubarb crumble, but the autumn flavors are delightful, too.

Meanwhile, Tucker and Easton Wine Project spilled over with patrons (more on Tucker here). My experiences with Tucker again stem from the pandemic and using their online grocery service to procure some amazing produce.

I’ve visited Easton Wine Project when a local citizen hosted a fundraiser for ProJeCt of Easton there. I was still in the development office at that nonprofit and Easton Wine Project perfected a classy vibe and delightful vintages.

But there are several new businesses at the Silk Mill that I have yet to try, so this might be the perfect place to have a middle-aged date night.

Stories about cats, cat rescue and health insurance

Angel Ackerman Leave a comment

The pandemic has prompted a lot of discussion about job loss, job growth, and changes in the economy. Other discussions have talked about the impact of various lockdowns and work from home situations on animal welfare, adoption and rescue groups.

** disclaimer: I am not an expert on any of these issues and the following blog post is a collection of my anecdotal experience during my life and in the last year.

In mid-July last year (2020), I lost my job at a small local nonprofit with an operating budget of more than two million dollars annually. My job loss stemmed from my supervisor’s dissatisfaction with my performance after she asked me to move from a job I was extremely good at to a job I had absolutely no experience in. (Forgive these excess prepositions because this experience was so stressful I don’t want to waste time perfecting my grammar because even writing about it gives me great anxiety.)

Around the same time, we had asked Feline Urban Rescue and Rehab for help neutering the two about 9 month old brothers, Misty and Fog, that we had trapped at our neighbor’s house.

Now, during my newspaper layoffs and even when I left other jobs, my health insurance lasted until the end of the month as the premium at been paid. Forgive my snarkiness, but at this particular human services non profit agency, the powers that be (as there is no human resource department or trained human resource professional) cancel your medical benefits on your last day to save money for the agency, because if they dispose of you before the 15th (or so I was told) the insurance agent refunds the monthly premium.

As soon as I learned I was losing my job, I asked my husband (at that point we had been separated for a year) if he could put me on his medical insurance as of August 1. After all, my July premiums had been paid.

So you can imagine my surprise when I was suddenly without medical insurance for two weeks.

Now, from what I understand, COBRA benefits can be purchased retroactively. And our local hospital has a good charity care program.

But still.

So that’s the background. We’re in a global pandemic, I’m unemployed and have $5,000 to my name, no medical benefits, and two male kittens coming of age.

Enter FURR.

When they helped us get low-cost neutering for our “greybies,” we thanked them and I said the fateful words, “I wish I had the money to give a nice donation but I just lost my job. But if you ever need a foster, I’m willing to help.”

Foster cat godmother gave us our first batch of kittens July 31.

Yes, we have been fostering with FURR for a year and a week. Foster cat godmother can’t believe that and says it feels like we’ve been around for an eternity.

Now, if you are one of my friends or a regular reader, you may recall that on August 1, our sassy little black kitten, Hades, bit me as I tried to medicate her infected eyes.

I went to urgent care that day as the finger was growing redder and redder. This was the very first day I had medical benefits and honestly I was scared that they might give me trouble as my insurance had lapsed. Was that fear rational? No. But was in understandable in American society? Hell, yes.

About six a.m. August 2, I went to the ER because the finger had swelled (despite antibiotics) and I could no longer bend it.

On my second day of renewed medical insurance.

I was in the hospital for four days. First time ever, other than during childbirth.

My neighbor— an economics professor at a local community college— and I had the discussion this winter: Who should be responsible for healthcare?

I abhor the idea that this is the domain of the employer. Your access to affordable medical care should not be tied to your job. I believe— even without “socialized medicine” (which I 100% believe in but think certain improvements are attainable without it)— with proper regulation from the government and this system abolished, individuals could find their own health care.

Insurance companies would have to shift their market to individuals instead of employers, and they would have to adapt and market more affordable products but would make their money by attracting as many individuals as they could.

Anyway, the teenager and I were talking about insurance and I was thinking about all of this.

Level unlocked: Bench Press

Angel Ackerman Leave a comment

I have been strength training on and off for the last 20+ years. It definitely makes my muscles easier to manage and allows me to fight the control issues and long range effects of cerebral palsy.

Today I did my first bench press in my session with Dan of Apex Training.

And that’s my first bench press ever.

At other gyms, with other trainers, we never did bench press. At home, I never had the equipment to bench press.

I found it exhilarating— I never realized how much coordination and full body balance a bench press requires. I always thought it was purely upper body.

I can’t wait to do more.

We did various upper body exercises including some newer movements I hadn’t seen before but I am perpetually pleased with Dan’s knowledge. And he has chickens and we share some tastes in food.

Occasionally during the workout, he asked if I could do one more.

I can always do one more.

That isn’t bravado — that’s my mentality for life. That’s how I survive my disability. I have to push my body to do what it needs to do.

My success and “feel good”-edness continued through my work day. I QCed 132 fixes (goal is 130).

I suppose there are two ways to approach life with a disability… One is to do nothing, and give up.

The other is to do one more. And grow stronger.

I chose one more.

Review: With Love From Karen by Marie Killilea

Angel Ackerman Leave a comment

Marie Killilea, mother of Karen Killilea and champion for research and improvement in medical treatment for those with cerebral palsy, wrote two memoirs and a children’s book about her daughter. She also wrote another book— though I don’t know the content of that one.

I’m puzzled by the title of this second memoir, as it refers to Karen’s correspondence with some American service men during the Korean War.

But the book focuses not on Karen, nor that correspondence, but family. The text itself is more beautiful and structured like a novel. Members of the family are cast with richness, though I think sometimes “Big Marie” (the author as her first born daughter is also Marie) gives the various pets in the household more literary attention than Karen.

Marie says she wrote the book in response to the huge volume of mail she received asking what happened next.

The second memoir focuses on all the children growing up, struggling with their futures and leaving home. Well, except for Karen, who, at least until she started showing Newfoundlands in dog shows, just exists in the background doing her physical therapy and for more than a year carries some unknown demon that she is wrestling and the family just lets her sulk. For a year.

The older children get married. A seven year quest for an annulment is chronicled. And elder Marie Killilea’s long-awaited miracle baby is conceived when she is 43. And then she is confined to bed.

Karen’s triumph is learning to put her own shoes and stockings on.

And in the end of the book — Karen reveals the source of her depression and her decision on how to approach her “freedom.”

I’m so disappointed not to know what happened to Karen. Remember Karen? I thought this was a book about Karen, not her damn dogs, the 80-year-old obstetrician, or what a holy Catholic family and their brood looks like.

Disability Pride Month

Angel Ackerman Leave a comment

This is part of a continuing serious about my journey even though I am more than midway through my 40s to understand my disability—cerebral palsy— after a lifetime of pretending it doesn’t exist

Since the teenager subscribed to the family plan of Spotify, my horizons have expanded.

I’ve found so many more podcasts, playlists and music than my 40-something brain can handle. But this allows me to learn new things.

For instance, that July is Disability Pride Month, but not Disability Awareness Month. And there is a Cerebral Palsy Day in October.

Disability Pride month started in 1990 to celebrate the updates to legislation mandating accessibility for those with special needs. And it even has a flag— black with rainbow zig zigs like a child’s depiction of lightning bolts.

How can you be proud of a disability? That sounds like it is anthropomorphizing the disability. Like it has a life. It does something.

I’m not proud of my disability. And I’m not proud to have it. It’s embarrassing and frustrating and, as I mentioned in my review of Netflix’s Special (read it here), when you have a mild disability people can’t see the depth of your struggles.

But I am proud that I get my ass out of bed every morning and do what has to be done.

And for the record, today is a hard day.

And one action I took, although small, I feel is mighty. I added a disability category on this blog and I organized it under the parent category “fitness.”

I started opening old posts and adding the tag, but I had to go get my second Covid shot (Pfizer) and then my neighbor accidentally cut the cable wires so now we have no internet.

And on our phones, the teenager and I share three gigs of cellular data. #singlemom

Anyway, no amount of stretching made my body relax. My back and lower limbs throbbed most of the day. And then after the Covid shot, my arm slowly got heavier and more sore. Now I hate to lift it.

The person who gave me the shot told me to use the arm and drink lots of water. I worked in women’s returns processing at the Stitch Fix Bizzy Hizzy where I opened and hung clothes from more than 100 priority mail envelopes. More than 500 items.

The warehouse was probably 90+ degrees but thankfully not too humid.

When I have these days, I tend to bend by doing lunges (to stretch my body and redistribute my weight), do calf raises in place, stand on one foot, and try to stretch my hips and back as much as possible.

But still the pain level seemed to keep increasing.

So in the car I turned on the heated seat and blasted the air conditioning while drinking some cucumber flavored water.

And took two Tylenol PM to ease the pain enough to sleep.

Funny part is— yeah as if it is funny— I don’t think it’s my cerebral palsy causing the pain. My period is due in four days. I think it’s menstrual cramps.

Everything wrong with my body seems to start in my lower back and hips. Hell, my daughter came into this world through back labor. Is that focus on my back part of the CP?

I used to take a lot of ibuprofen, then Aleve, then meloxicam. After a while, I realized. None of it helped.

I was listening to Dax Shepherd’s Armchair Expert last night and they did a special episode on medical misinformation. They had some pretty rough feelings toward chiropractors. They pointed out that chiropractors can be good or bad, but that the field itself isn’t very regulated or science-based. They turned the conversation to physical therapists. They liked physical therapists.

What about chiropractors who have a physical therapy background? My chiropractor can find muscle tension and stretch out things I didn’t even know I had. And my body seized up from being crooked and she straightens it out.

I guess I have a good one.