More unintended advocacy and nursing a bruised soul

Three more days.

Three more days and Mercury comes out of retrograde.

Three more days and my tenure at the Stitch Fix Bizzy Hizzy comes to an end.

I had a job interview yesterday that led to a second interview Monday.

And yesterday was the two year anniversary of Parisian Phoenix Publishing, and I found out yesterday that Parisian Phoenix did not make it to the finalist round of the Innovative Voices program of the Independent Book Publisher’s Association.

What do all these things– well, everything but the whole Mercury retrograde thing– have in common?

Me. Still talking about disability.

I’m struggling. Change happens. I get that. But I just feel like everything I’m trying to do becomes a pile of various obstacles, so am I on the wrong path? All summer I felt like maybe I was finally headed toward new beginnings and small successes, but now I have my doubts.

And even things that should be success feel like delayed failure.

I’ve gone over the finalist list for the IBPA Innovative Voices program twice now, and I asked The Teenager to take a look. And she confirmed what I thought. Every finalist is a person of color/BIPOC or representing the gay/LGTBQIA+ community. Not a single disability voice among them. And then the teenager said it, “Well, Mom, color and sexuality are how most places do their DEI.”

It has taken me 40 years to accept and embrace my disability, and now that I have not only accepted it but worked to be a voice of advocacy, I open myself up to a whole new level of hurt.

Which brings me to work today.

Monday my table got moved. Today it moved again. But surprise, surprise, I liked today’s table (even though the air was stale and hot). And then… it happened. Because I was on a different line, I had different support people. And the support person on my line did a very sloppy job of presenting my work. Meanwhile, on the other line, a different support person presented someone else with similar medical accommodations a cart that was tidy.

It might sound petty. But because the company allows each individual to work such situations out with their peers, this leads me to feel like the person who brought me my cart resents having to help me.

And so I went to my supervisor. And I reminded him that all I wanted was to be treated the same. This other person has a temporary (and technically voluntary) disability that has lasted about six weeks. I have been dealing with this for more than a year. I have been disabled and will be disabled my whole life. The person with the temporary disability gets fawned over by her peers– including one peer who literally marches up and down the aisle telling all of us to help her.

So today, she gets the work from the bottom of her cart placed into boxes with pack slips placed neatly on top, and I get my work thrown on top of the boxes which are placed on their side on the top of the cart in a great big heap.

And once again, I ask my supervisor to help me find out if Stitch Fix has a policy in place to promote consistency between disability and medical accommodations. He promises me a chat later.

I go back to my table. A lead brings my next cart, and she doesn’t address my accommodations at all.

When the outbound manager walks by, I mention this to her.

And in the afternoon, I sit down with my supervisor and a manager and we discuss again:

  • how my accommodations have been inconsistent and I don’t receive communication about how or if they will change.
  • how other people with what appears to be similar accommodations receive “better” or “more” attention than I do.
  • how too many people are given the power to make decisions about how their peers will be treated
  • how disability is an issue for any workforce, whether a person has a disability, ages into a disability or has a temporary disability.
  • how Stitch Fix’s approach to inclusion for disability (and their ‘communities’ to support such efforts) focus on mental health and neurodivergence
  • how Stitch Fix has made it difficult for me as a person with a permanent disability, especially since I was moved from the job I was hired to do and they changed how our job performance was measured.

Tomorrow I am sitting down with the health and safety manager for our facility, as he will be moving to the Phizzy in Phoenix. Whether you call it favoritism or discrimination, my experiences have been frustrating. The company maintains that medical accommodations are extremely personal, cannot be policed by leadership, and rely on relationships between peers which assume people will do the right thing.

So, what if they don’t?

I have been working with the same people for more than a year. They know. And I feel like this work-it-out-amongst-yourselves approach has led to people claiming medical accommodations when they don’t actually have then.

Random Thursday nonsense: a trip to the neurologist, strange items brought home from a warehouse, the start of goodbye… and caramel apple coffee.

I feel a little guilty right now because The Teenager has a sore throat and what appears to be the start of an ear infection. It’s a common occurrence for her and nothing says “back-to-school” like an ear infection on a 95-degree September day.

I had a good day, and despite my ongoing sensation of exhaustion (none of us who work at the Stitch Fix Bizzy Hizzy sleep well these days) I am experiencing an emotion I think I recognize as joy. It is bittersweet as I had to say goodbye to two work friends today, and many more will go tomorrow.

Speaking of the warehouse closure, I’m starting to feel unsure whether we are closing a business or a preschool. Today’s free pile included lanyards, insulated branded lunch bags, gift bags, inflatable guitars, bingo cards, and raffle tickets. Yesterday I brought home stickers, pipe cleaners, serving trays made out of cardboard-ish, egg carton material and I almost had a collapsible storage cubby but a random elderly colleague came over, took it out of my hand and said, “excuse me, that’s mine.” I handed it over because 1. I’m not acting petty over free things and 2. I was taken aback (but not surprised) by the gall.

My neighbor whose nickname I can’t recall had the other cubby and she offered hers to me, but I declined. She picked hers up fair and square. And really, I don’t need more random stuff.

I’m going to bounce around in this blog post, but I’ll try to use subtitles.

Sharing my words

So I went to my neurologist/physiatrist today and I gave her one of the Parisian Phoenix books, Not an Able-Bodied White Man with Money. We had talked about it the last time I saw her and she told me to email her the info because she wanted to buy it. No one has ordered that book since the last time I saw her, therefore I thought it was safe to bring her a copy.

She started flipping through it right away. She teasingly chastised me for distracting her, and I told her that next time I would save books for the end of the visit. She also mentioned she had a patient whose wife was considering approaching a breeder about a mobility dog prospect for her husband, and she (my doctor) wanted to know the name of the program where I am on the wait list.

My doctor believed it would be too much expense and too much of an undertaking for this couple to buy a dog and have it trained as a service dog, especially since they don’t even seem confident that a dog is right for them. My doctor suggested looking for a program, and I offered to speak with them if they so desired.

When I left the office, I discovered organizers of the Artful Dash on the Stirner Arts Trail here in Easton reached out via Instagram to ask if they could use photos from my blog to promote this year’s 5K. I, of course, gave them permission.

Medical stuff

Today was my last specialist appointment before my benefits change. My team and I seem to be on the same page, and they appreciate the fact that I pay attention to my body and try to implement lifestyle habits to counteract any health issues.

My gynecologist, primary care physician and my neurologist/physiatrist all agree that some of my current stiffness and bladder issues may stem from a combination of stress and change in exercise habits. Now that my increased sodium intake seems to have eliminated my orthostatic hypotension and decreased my fall risk, I am working on losing weight (ten more pounds off by Christmas I hope) and paying more attention to my urination issues. My current management of my potential incontinence symptoms includes using a toilet every time I see one, and honestly, unless I start having recurrent issues in public I’m not concerned. It could be, my neurologist said, that my theory that my days of bad spasticity means my bladder might be having spasms, too.

And the random tingling limbs so far is not a cause for concern. But, as always, I have a list of symptoms to watch for.

Random Caramel Apple Iced Coffee

We received Wawa gift cards at work last week and I stopped yesterday and got a caramel apple iced coffee. Now, I don’t normally like Wawa’s iced coffee. It’s too weak for me. But the cold brew was a $1 more and I’m cheap.

It was delicious, though I do wish the coffee were stronger and they never put enough ice in there so it’s always warm by then end. Because I don’t normally drink sugary coffee I was buzzed by the time I got to the gynecologist.

7 more days

I wake up at 4 a.m. It’s ridiculously early, but it allows me a bit of writing and thinking time before delving into my day. And the reality is here that I only have to do it seven more times. Some of my friends are leaving Stitch Fix this week, one is done tomorrow. We are all human so some people leaving tomorrow I won’t miss, and many I’ll never talk to again.

Every job loss experience is different– and no matter how much warning you have or how prepared you think you are, it takes a toll.

People will offer advice, or enthusiastically recommend avenues of employment that won’t work. Some people begin to critique your finances, which isn’t any of their business, as they gently suggest maybe you shouldn’t have taken your daughter to the movies last week. (We saw Strays and the Barbie movie, because both have some significant statements on society’s behavior while maintaining humor and also, well, being a certain level of amusingly dumb.)

My daughter started college at Lafayette, and I wanted to celebrate this milestone with her, but we both have more commitments than time and sense. So to sit in the dark together and laugh seemed a good use of our time and money.

My doctor sent me a note that he’s concerned about my elevated cholesterol, total 183, “bad” cholesterol 107, which has me a tad perplexed because it’s been at this level for three years and we all know my diet needs work and has had some recent challenges, especially when I’ve used fast food to quickly raise my sodium levels.

I reviewed my food diary from this summer and there were only two instances all summer where my daily cholesterol was more than 200 mg/day, when the daily recommendation is under 300 mg/day. I think as I focus more on returning to a better weight, as I work to improve my mobility, this situation should improve. Probably more than half my diet is plant-based.

Speaking of health and mobility, Susquehanna Service Dogs sent me my paperwork for my six month check in. Everyone on the wait list must check in every six months.

Today I go to the gynecologist for my annual. Tomorrow I have my final check-in with my neurologist/phsyiatrist before losing my insurance. (We’re going to discuss my increased stiffness and recent reliance on my chiropractor and my urinary issues.) And Friday I visit my chiropractor.

I also received my first shipment of products through Amazon Vine. Amazon contacted me since I tend to leave reviews on the products I buy and offered to make me an official product tester. They asked me to test a purse organizer, which seems a strange product to offer, but The Teenager has put the item to work. We also received a pair of pet nail trimmers, which were very nice, and a bird toy which the cats loved but Nala is not so sure yet.

A day with the firecracker (some fun at the warehouse, and a trip to the doctor)

Work

I came into work today feeling my oats for some reason. I don’t even know why, but I quickly got sassy and playful. I started my day with strong numbers– but immediately I noticed one of my peers running support kept coming into my valley to give her friend work, when she wasn’t really in charge of our valley.

And the work she was bringing her friend was the easy work, the work I’m supposed to have access too and this support person didn’t share any with me. Just took it all to her friend– who has no reason to need the work that requires less bending.

I look around and I see other who have been given the same accommodation I have, but mine have not been adjusted for the day. And I don’t think the person I saw with three carts adapted has official medical paperwork. Yet, I had to trade work with a neighbor because my work did not meet my documented needs.

So I mentioned to my supervisor, maybe we could sit down with P&C (People and Culture, Stitch Fix’s HR department) to offer some final insight that the company does not seem to have appropriate, consistent policies in place to meet workers’ needs when it comes to reasonable, official ADA protected accommodations.

Not even thirty minutes later, the person who brought preferential work to her friend (who is the same person who messed up my fix last month if you were here for that saga) brought another cart of that work to my neighbor, I can’t recall if she has a name in this blog, so I’ll just call her my neighbor and fan (as she is reading my Fashion and Fiends novel series. Please buy books. I am losing my job after all.) My neighbor gave her the nastiest glare, and she walked off the floor and went to someone to complain. Then, she gave me the work.

The person who brought it to her apologized, and my neighbor explained to her very politely that I have documented medical issues. She said she didn’t know, but that’s malarkey because she told me to my face that she would only give me the work when she was certain she had enough for everyone else.

So she knows better, because she was admonished before. Even my neighbor mentioned that is really is ridiculous that every day I have to advocate for myself. And they had a really good system in place in the beginning, but too many people complained that they didn’t think it was fair.

But on the happy side, we had a popcorn chicken luncheon and left work at noon so that gave me a chance to rest before my physical and keep editing Road Trip, the fourth full novel of Fashion and Fiends.

Medical

When I arrived at my primary care physician’s office, half the office had lost power. Mercury is indeed in retrograde. I have lost four pounds recently. My blood pressure is good. I had no new complaints and I thanked the team for being so diligent and willing to listen to me throughout the craziness of 2023.

And to think– salt may have been the culprit all along.

My primary care physician read my neurologist’s notes and called her “smart” and “good” and liked her assessments and her approach to my care. So I mentioned to him that I have two questions I ask every new doctor.

  1. What do you see when you examine me?
  2. If I add you to my team, when should I call you?

This allows me to digest their observations and learn from them and know exactly which doctor to call and under what circumstances.

Then my doctor and I discussed medications, and I confirmed that I’ve felt great since weaning off my SSRI and that my new cardiologist and I agree that once I get through this job loss and transition into whatever else is next we will probably discontinue the beta blocker.

It’s always a good idea, he said, to minimize one’s medications.

I mentioned that I just didn’t think it would be a good idea to have an SSRI, a muscle relaxer and a beta blocker in my system. That’s why when he called and told me to stop the SSRI, I had already been lowering my dose.

I added to the conversation that I knew I had a responsibility to do what I could to solve the problem, because the medical establishment would eventually start throwing more pills at me if I didn’t improve. And that that is not a criticism of doctors, but an admission that I felt something was off so if I did everything I could do to give the doctors more clues, it would hopefully lead to answers.

He paused for a minute, and agreed with me, and basically thanked me for taking responsibility for myself and my health.

The Gym

Today, Andrew tried to cripple me with a leg workout. I can feel him challenging my range of motion and I love it. I did manage to deadlift about 120 lbs.

Another day in a sad warehouse

At the Stitch Fix Bizzy Hizzy, the facilities crew is quite literally taking the warehouse down around us as we do our jobs. Bits and pieces of the warehouse are literally left on a “free” pile for employees to cannibalize– plexiglass, craft paper, pvc pipe, stickers, lanyards, pins. You never know what bits and pieces will turn up on the pile.

This week started early dismissals, where they let us go while paying us for the whole day. They already diverted the bulk of our work to the remaining warehouses– the Hoozy (Indiana), the Phizzy (Phoenix) and the Breezy (Atlanta). The company didn’t expect so many of us to stay so long. Tomorrow we have our final employee appreciation luncheon.

Today we received tickets for a raffle for some of the larger items left and some random prizes (outdoor chairs, air fryers, speakers, a shop vac) and furniture, decorations, and a bidet. They set up the items in the back of the warehouse, where we crossed an empty central zone where the facilities team has been stacking empty work tables, unneeded conveyer belts and pieces of racks in large cardboard gaylords.

And even amid this, and as I interview for new positions that range from professional to freelance to more warehouse work, I struggle to make my numbers. I almost wonder if my body is saying, “What’s the point?”

And today I realized, as we still struggle with “us against them” mentality in a warehouse full of cliques, that everyone is eager to help a friend with a temporary disability– like pregnancy, childbirth, surgery, an accident or an injury. But if people are asked to help a stranger or a peer with a permanent disability, especially if its something alien or scary to them, some will be reluctant or resentful. And some, if faced with someone who may have an invisible disability, will behave in a manner that is judgmental and without grace.

So, as I step into another sad day in our warehouse, I ask all of us to extend grace and kindness wherever we can.

Everything Wrong with America

I miss my more carefree days– which didn’t seem carefree, until now, when I have several appointments after each 8-hour workday in the warehouse, health issues to sort, a job hunt and debt to pay. Life is never simple or easy for most of us, but 2023 has, for me, felt like eternal optimism and hope while being bludgeoned. I get my proverbial sh*t together, and something outside of my control decides to parachute into my life.

When Stitch Fix announced closing the Bizzy Hizzy, they scheduled all sorts of guests and workshops for us as displaced employees. My separation date is September 15, so I have four more weeks, or two more paychecks, depending how you look at it. One of the workshops Stitch Fix hosted, and paid us to attend, was a visit from the state “Rapid Response” team to explain how unemployment and career services from the state work. They handed us a booklet that told us how to survive our layoff. (Surviving a Layoff: Your Guide to a Soft Landing and a Smooth Re-entry by Harry Dahlstrom. Mr. Dahlstrom, I’m sure you’re a very intelligent and likable person, but your advice is written for middle class Americans with two cars and their own house.)

“Remember that emergency fund with three-months pay stashed away…” Oh, Mr. Dahlstrom. Do you not have a child going to college this fall? Or medical debt? Or a used car that needs constant repairs? Or a teenager whose car insurance costs $500/month because of an accident? That’s just me. Others might have a disabled or unemployed spouse, student loans, bad credit that led to predatory loans for everyday items… or maybe they just recently got this job and had been using their credit cards to survive.

“Reduce your thermostat to 68 degrees.” Oh, Mr. Dahlstrom, mine has been at 64 for two decades.

“Trim your entertainment.” I don’t have cable. I don’t have any streaming services (though the Teenager has Spotify, which she pays for, and she also bought HBO Max and made for the year upfront.) I don’t even have home internet, relying on my phone’s hotspot and public connections. I think the last time I went to a movie was two years ago.

“Prepare a weekly menu” and “put back 10 percent of the things in your [grocery] basket.” Oh, Mr. Dahlstrom. I spend $250 on groceries for myself each month, that does not include the Teenager as she buys her own groceries. And I do get coffee or a donut out, which adds up to about $25 a month, which I consider reasonable as, as you mention, I search for discounts.

Other advice includes: “collect old debts,” “turn unwanted things into cash,” “change your lifestyle,” and “bring in the paying customers” using a talent or skill. Because my half-a-double home that I pay about $900/month for is full of useful items? I haven’t even had a vacation in about five years. And my talent? It brings in about $150/month on a good month.

“Unload the family jewels.” Mr. Dahlstrom, I’m so frugal I wouldn’t even let my husband buy me a diamond for my engagement ring. When we got married, we used Irish claddaghs so all I had to do was switch it to the other hand. I don’t own a single piece of jewelry or any item worth anything. My car is a 2015, my computer is a mid-range model, even my Brooks Brothers suit is 15 years old at this point.

But this is what’s wrong with our country. As a society, we assume everyone “poor” or experiencing financial trouble or unemployment is in that situation because they are irresponsible, stupid or did something wrong. And sometimes that poverty or situational bad luck is due to society’s expectations.

For example, starting with my generation (the GenXers) we insisted that our kids go to college and saddled them with loans to do it. Then, we flooded the market with bachelor’s degrees, which rendered them meaningless, and started pumping up the value of master’s degrees. For those of us associated with the arts or wishing to pursue an academic trajectory, a Ph.D. is now required and some perfectly talented individuals with MFAs are now trapped in a life of eternal adjunct status.

And the poor Millennials also fell victim to this higher education fiasco except the cost has skyrocketed and these poor kids are starting their lives with student loan payments that rival my mortgage and they can’t land a job with a living wage so they work in warehouses with the same people who skipped the education in the first place.

Now, add to that the way the medical system works. In my opinion, and this is just my opinion, more people than ever need some sort of medical support in their life. Whether it be disability, illness, mental health struggles or maintenance medication, it seems like more people than ever spend a ridiculous amount of their income on healthcare.

I have been extremely fortunate that my mathematical brain allowed me to calculate costs and I determined that the free to me high deductible health plan, when you included the employer contribution to my health savings account and a $50 contribution from me to that same HSA each paycheck, paid for most of my medical costs this year (except for my mental health therapist, who for some reason, the medical insurance company likes to pretend doesn’t exist. They just won’t communicate with him or pay him).

Now, before I continue on this rant, I don’t understand why healthcare in this country is primarily connected to employers and employment. Why is it an employer’s responsibility to provide access to healthcare? Eliminating this ridiculous practice might be a good first step to getting healthcare under control. If you meet certain criteria, you can qualify for government-sponsored insurance, which also dictates the level of care you receive, and the open marketplace for healthcare is expensive.

I just don’t understand why everyone isn’t pushed to the open marketplace OR why everyone can’t qualify for government insurance. If everyone went to the open marketplace and insurance companies had to compete for individuals instead of corporations perhaps the access to care would change. In other words– even a company like Stitch Fix– has thousands of employees. If insurance company had to court those individuals and families, they would have to work a lot harder to court them versus convincing one corporation to allow them to insure a large group of individuals.

I missed a month of wages after my hospitalization, which due to the one week waiting period, even with my employer-sponsored short term disability insurance, only provided three weeks of wages at less than 67% of my normal wage, and on top of that the company administering those payments misplaced my paperwork which meant I had to repeating submit paperwork and did not get the last week of those wages until one full month after I returned to work. And my doctor had to submit three sets of paperwork. Which, technically, costs $25 a form for the doctor to submit.

And because I have a congenital and permanent mobility disability, I always need physical therapy. But physical therapy sessions cost hundreds of dollars and insurance companies limit access to them. So I hired a personal trainer and pay him $25 a session (which bless him, he has now reduced his rate to contribute toward my fund to pay for my service dog which is another $5,000) and I bet Mr. Dahlstrom would say I should eliminate that from my budget as an extraneous expense.

But Mr. Dahlstrom, I imagine, does not live with a disability and has probably never experience what it’s like to have a leg that just suddenly stops working or a hip that feels like it’s waving to people from my butt. And since my muscles and my brain literally cannot communicate, I have to physically show them what to do so that movement is reduced to muscle memory and does not have to include the brain.

In closing, I’m going to end this long and winding blog post with a celebration that also highlights everything wrong with America. My friend Southern Candy from Stitch Fix turned 65 yesterday and she asked to go to Shady Maple Smorgasbord. That place was SO BIG, I think my whole d*mn town could have dined together. They had so much food and so many cooking stations I think we could have fed a village from a developing nation for a week.

The staff was amazing. The food was quite good. The gift shop was enormous. And in general, it looked like people were only taking what they could eat. But we all ate too much. I had three dinners and two desserts and spend several hours thinking I might vomit. The cajun catfish and the carrot souffle were my favorite. And I really wanted to punch an old man in the face because as I was reaching for the last piece of coconut custard pie, he snatched it away from me.

And the reality of how much food, how many steaks, how many excess calories we were all consuming filled me with such guilt and shame. Our culture, and you can disagree with me, is so centered on gluttony and selfishness. So while I was happy to spend time with my friend, and take a road trip with her, and laugh with her– I have to ask: how can such a place exist? I’m sure the intent, because Shady Maple started decades ago, was to provide a place where people could dine and have a wide variety of choice and not have to chose, or for families to dine together while pleasing difficult eaters. But this was insane.

I had a bladder and kidney ultrasound today

It’s definitely Monday. You know those Mondays when you can’t get motivated and the day drags on forever? Yup, one of those.

I mentioned to my neurologist/physiatrist that sometimes when my body gives me trouble I can’t feel when I need to pee. She tested my urine to see if I had some kind of infection (and I didn’t think I did as this started more than a year ago). When my urine came back clean, she ordered a bladder and kidney ultrasound.

The test begins with an ultrasound of a full bladder, so I had to drink 20 ounces of water an hour before the test and not use the bathroom.

I selected a facility near work, so I could head over directly after my shift. The lobby was loud, and it seemed like every female patient had a two-syllable name that started with A. And then, an old lady stumbles awkwardly through the waiting room, bent strangely, a heavy purse dangling from her arm and, even more maladroitly balanced below her stomach, a toy poodle.

Yes, a poodle.

She practically falls into the chair at registration, and soon after completely her paperwork, releases the dog on a retractable leash and it’s running all over the lobby. It’s certainly not working, and it’s certainly not wearing the appropriate gear to be a service dog.

The ultrasound tech did a magnificent job and we talked at length about Stitch Fix, my publishing company, higher education and then she asked me about my educational background. Maybe she’ll buy some books.

What makes today a good day might change tomorrow

This week presented many challenges. Monday I was hurting, probably from too much computer work during my 10-hour weekend editing sessions each day. I survived Monday, but barely, only to learn that Tuesday I would be moved to a different station in the Stitch Fix warehouse.

Change is never easy– but in this particular instance, as a person with a documented disability and doctor-derived medical accommodations, I struggle in my normal environment to perform at the same level as an ordinary employee. And that’s my job, to do the work, with a reasonable amount of help.

The main consideration used by management to determine assignments on the warehouse floor is table height. Is the work surface the appropriate height to match the ergonomic needs of the employee? In my case, my performance also relies on which side of the line I am on and who is “on support” that day. I work on “the B side” which does not mean I am not a radio song. It means the conveyance system that moves the fixes to the next stage of the process is on my left side.

I rely on my left side for balance. Therefore, to minimize potential issues with my hip and ensure my balance and stability, I need to work on the side where I turn to the left to put my boxes on the line.

My original table assignment for Tuesday was on the right, or the A side.

Requesting a B-assignment got me moved from line two to line four, which meant I would no longer have my regular support team. (That’s the role of the people who deliver work and supplies to those of us who fold the clothes.) I have been told that it’s my job to remind these folks of my medical needs. And they don’t always like that. So it makes me uncomfortable. Because in my view, it’s not my job to tell someone else how to do their job.

And to make matters more fun, it’s up to the individual to decide how to provide my accommodations. The deviations are small, but the impacts are major. The cart typically arrives with eight fixes on four shelves, with five to eight boxes lying horizontally on top of the cart. Most people move the boxes (I often take them) and pile the work from the bottom of the cart on the top. Some people even put the fixes from the two bottom shelves and place them in boxes on top.

I don’t even ask that pack slips be placed with them. I have myself trained to flip them to match the new order. Which confuses everyone but me.

This particular day, my support person, who I believe is a delight, so this is no reflection of who she is as a person, decided she would place the clothes around the boxes without moving the boxes at all. She tucked them all over the boxes. Which meant if I moved the cart to my station or reached for the boxes, the clothes fell on the floor. How does this help me? Keep in mind– I go through three carts an hour.

I eventually complained to a supervisor and said something like this:

“I know it’s too late now, as we’re closing, but there really should be a system in place where Stitch Fix defines what the accommodation is for the doctor’s orders, because it really shouldn’t rely on individuals who don’t understand the disability. And maybe it’s a violation of privacy, but those of use who need the extra attention should be arranged together so support automatically knows if we’re in that section, we have an accommodation and it would also cut down on people requesting accommodations when they haven’t done the paperwork.”

The supervisor said that was a great idea and lamented that I hadn’t mentioned it earlier. I didn’t mention it because it’s basic logic.

Somehow, I survive, and I make numbers. My body is so twisted I can feel that if I move wrong I’m going to pull a muscle in my lower back. But it’s okay because I have the chiropractor on Wednesday.

And then I get the table from hell on Wednesday. It’s the right height, right side, good support people. But it’s a front-of-the-line table, so I have to keep pushing the boxes toward the end. The fan keeps blowing my pack slips, which means I need to tuck them under my craft paper roll instead of on my laptop keyboard. But I keep forgetting, which means every cart I repeat chasing a paper, and tucking the others under my craft paper roll. My scanner keeps disconnecting from my computer. And if I need to go get a large box, which is common now as we are transitioning into winter clothes, I have to walk to the back of the line to get it.

These things add ten to thirty seconds to every fix. That’s 40 minutes over the course of the day. And I finished at 91% which is bad enough to get me a warning. And so I’m stressing, which tenses my muscles, and since my neurological condition already creates issues with my muscles not relaxing just makes everything worse.

And midday, the leaders got out an inflatable beach ball so every one could bounce it around to each other. That upset me more because I don’t have time to have fun. How dare they think I might be able to survive this and have fun?

Nicole Jensen of Back in Line Chiropractic aligned my lower body and stretched out my legs and I left her able to stand up straight and move my legs without stabbing pain.

This is where the difficult mental part of disability takes over. It’s so much easier to give in, to rest, to eat ice cream and watch TV and be done. But I knew my body needed to stretch and move in order to correct whatever issues had been caused by my misalignment and muscle tightness.

My brain and my muscles don’t have good conversations– so it seems like I can to manually perform a motion for a while to teach my body how to do it, even if that is reminding it how feet go or how a gait is supposed to work. That’s why I go to the gym. Not just so someone forces me to exercise, but also so someone can make sure I am using body parts correctly.

But I have to tell you, I dreaded going to the gym. I had been in pain all day. I wanted to take a hot shower and go to bed.

Andrew texted. He had a situation at work. Maybe the universe thought I needed a break. When Nicole works on me after such bad body pain, I’m often achy the next day.

Then Thursday went fine. Great even. But the pain crept back Friday, not nearly as bad but it took me most of my day to get my metrics at work to solid ground. And Friday night I went to the gym, and despite how I was feeling, I had fun and did well with some heavy weights.

I made some salmon and trendy smashed potatoes with vegan tzaziki sauce for dinner and the Teenager loved it. I fleshed out the writer’s proof for the erotica book. And went to bed feeling like I had been successful.

This morning I got up, discovered I had low blood pressure after I took my beta blocker (oops) and had a light breakfast– coffee with PB2 and cream, PowderVitamin Electrolyte Powder Plus in strawberry cucumber and these breakfast biscuits from Olyra. I thought they’d resemble a Reese’s peanut butter cup or a Tastykake Kandykake.

They were hard, dry and the peanut butter cream was minuscule and didn’t even moisten the cookie. Terrible. And I love their yogurt breakfast biscuits so how could this taste like someone managed to shape chocolate-flavored protein powder into a cookie?

Anyway, the moral of the story is: sometimes what you can achieve one day is much less than what you achieved on a different day.

Who are these descriptions for? A rant on internet image descriptions (endorsed by a blind person)

There is a new accommodation popular on the internet– image descriptions. Nancy and I were talking about it last night, because she has her cell phone now and is receiving email and interacting with the web it new ways.

She asked a question that has bothered me about these descriptions since I first encountered them– who benefits from them? Depending how the description is written, it doesn’t help and if the text near the image is well written (in an email, newsletter or blog) a description should be in the text. (But I’m also trained by my experiences with Nancy.)

If I described a selfie of me as a woman about 5′ 4″, brown eyes, glasses and brown hair in a floral dress many of those details mean nothing to a blind person. Details that matter would be I have wild curly hair that flows past my shoulders, I have uneven fingernails but smooth skin, and a long sundress with ruffles and a kick pleat on both sides. And when I walk, my gait has a scuffle to it due to my cerebral palsy.

See the difference? Pun intended.

Most of the images I see described feel like they were written for someone who had seen at one point. A congenitally blind person does not attach meaning to colors or conjure the same connection to concepts like “sky” that a sighted person does. Just like when I interact with darkness, while I use techniques Nan taught me as to not harm myself, my concept of that condition and hers are different. When the electricity goes out at night, nothing changes in Nan’s world except the television won’t work.

I feel like too many attempts to acknowledge and address the needs of the disabled focus on the experience and needs of the able-bodied who become disabled which are often different from the needs of the congenitally disabled, even if the impairment is the same. In my experience, the able-bodied community wants to fix disability and would rather see the disabled person function in the same manner as the “normal way” rather than adjust their expectations and methodology to accept a method easier on the person with the disability.

Again, in my experience, people with disability learn the “right way” and must struggle with the “right way” and even accommodations can focus on allowing the person to perform the task the “right way,” until the disabled person, a clever occupational therapist, or empathetic mentor finally discover an alternative method that might not look like the right way at all.

And sometimes that makes the able-bodied community uncomfortable. Consider the brouhaha one can often encounter when dealing with handicapped parking spaces and who deserves them and the “rules” regarding having a service dog in public.

And on top of all this, we have the able-bodied community who experiences temporary disability or permanent disability. When these people can’t go of their “right way,” that is when we start to see efforts to make the disabled experience feel more like the able-bodied one. It’s actually person who went blind at 30 or the person slowly experiencing vision loss who wants to hear about the color of my hair.

And those seem to be the type of accommodations that “catch on” and “stick.” Because it’s an activity easier for the person extending the gesture. The sighted person writing the description looks at themselves as if looking in the mirror instead of imagining how someone might find him in a dark cave. And the answer is not “with a flashlight.”

In more personal news, thanks to the hard work of my chiropractor, Nicole Jensen, and my trainer at Apex, Andrew, my body might be overcoming its last episode. It’s annoying to think I must maintain three workouts a week to keep my body from seizing up and forgetting how muscles work.

Yesterday, I could feel my leg pulling and turning wooden as I like to say. I can only describe it as I can feel it pull away from my body. It no longer listens to my nervous system and it feels like I have to pick it up and drag it with me as if it were a prosthetic.

So, after Nicole got everything aligned Wednesday, and an upper body/core session with Andrew after chiropractic care, and some reflection Thursday from my new cardiologist, I walked to the gym Friday. We did legs and some barbell squats. And some planks. I haven’t done planks in ages. Held steady for a minute.

Andrew asked me functional questions about what my legs were doing and I had to remind him, “I can only tell you what it feels like, I really on your observation to tell me what’s actually happening.”

Because with cerebral palsy, my muscles rely on repetition and routine to remember how to function. As I understand it, my brain’s instructions just don’t make it there. So my lower limbs just do what they want, until I consciously connect them all and just like learning to fold clothes into perfect little 9×9 squares as I do at Stitch Fix– it only works when the action is embedded into muscle memory and the thousand steps it takes to execute just happen without thought. THAT is what I am hoping to achieve. But as I learn what to correct and how, someone (and that’s Andrew) needs to observe me to make sure I don’t miss anything.

Just some Saturday musings.

Feeling heard (and a week gone by)

Folks, I don’t feel like writing this. I’ve had so many demands on my time that I don’t even think about what I can write or when I might have the time to do it. I’ve had one job interview, told one I wasn’t interested and have a third coming up Monday. Today was the first day at least this week that I didn’t feel like my leg would fail to support me.

I had some incidents last week where my overscheduled life led to idiocy (like leaving the rats in their play area, leaving the house and driving 20 minutes away before I remembered them) and some joyful times too, but honestly I feel like I write my calendar out on Sunday and don’t even have a chance to look at it until Thursday.

I gave my doctor the new paperwork for the absence management company last Thursday and I haven’t seen any evidence that they received it. I continue to struggle through my issues at work (though today was the day where I didn’t feel like my body was falling apart all day but more on that in a minute) meanwhile… I have a hard time keeping my feelings in check when I see others milking whatever they can to get special treatment at work.

One woman had a migraine all week but did her job.

Today we had a massive barbecue at work, and an appreciation luncheon yesterday, as the local managers rush to spend their budgets before we lose our jobs. Despite this feasting, I have lost 2 pounds according to the doctor’s office (and I hope that it might be more since I have increased my sodium so much that their should be some water retention with that).

In the photos, you can see some of us going through the food line, my friends concentrating on their bingo cards, and a friend’s demolished plate.

After all of this, I went to a new cardiologist. A female. I swear I know her from my nonprofit work and I have to wonder if she served on a board somewhere I worked. Yesterday, I went to the chiropractor, my beloved Nicole Jensen of Back in Line, and then went to work out with Andrew at Apex Training.

So, I told everyone my theory. And to date, no one, including the new cardiologist, has disagreed.

Fact: In January, my blood pressure went up. I don’t know why. I was taking Lexapro at the time to try and keep my blood pressure lower, because it was due to stress (and I had lost my father a year early and don’t hear from my other family members, even when I try to reach out so the idea of a low dose SSRI didn’t seem like a bad idea). I had been on that medication about a year. I also take baclofen to help my legs move better, which I started more consistently in November, but had been taking since May. My doctor advised me to watch my diet and my sodium.

Event 1: March 1 I dove down the eight concrete stairs at work, smashed my finger (in a bad sprain that has left it still quite bent) and almost passed out after the event. My blood pressure was fine.

Anecdotal evidence: I had eaten a lot of fast food that weekend.

Sidenote: Saw the hand rehab specialist/occupational therapist for the first time during the day March 13, went to work late, and had set up balance physical therapy to begin March 20 at the request of my doctor.

Event 2: At the end of the day March 13, about 7:30 p.m., I fell down the stairs going up to my room after a big meal. I had had Little Ceasars and Taco Bell that weekend. The bruising on my back knocked the wind out of me and my face was gushing blood where I had slammed it into the air conditioner that my daughter had rested on the floor. Went to the ER for stitches, found out I was in afib.

It took some time after that to get the results of the heart monitor back (I’m fine), and it took some dickering so the beta blocker didn’t give me low blood pressure and postural hypotension. But I kept having episodes of each.

Later, in June, I was told to stop taking the SSRI because I had a risk of fatal arrhythmia.

I asked my doctor to see the nutritionist and she said I was not eating enough salt because of the cardiac diet recommended and washing what sodium I did eat out of my system. Within three days, I felt 90% of myself.

Now, I mention all of this because one of my original theories about why this had happened addressed salt. I had thought the universe was punishing me for eating all that bad food, and my first cardiologist whom I saw in the hospital, pushed the idea away. And that’s why I went to a new doctor.

I also believe the afib could have been caused by the bodily trauma of my fall down the stairs. And that I feel so awful when my blood pressure is 110/60 because of my cerebral palsy– that my body just needs more than that to make this body move.

And my new doctor believes that I’m on the right track. That:

  1. Lack of salt might have initiated the symptoms which led to the falls in the first place.
  2. I might never have an incident of afib again.
  3. And — when I’m ready– we can potentially change or eliminate the beta blocker.

Honestly, with losing my job this fall, I’m not sure now is the time to take my heart off anything that helps keep me calm. She also mentioned that I might do better on an extended release formula.

That’s all I got. And this took up the last of my free time. Sigh.