Another piece in my understanding cerebral palsy series
Technology can offer an opportunity for a great equalizer or perpetuate a divide. In both cases, there is a complexity that arises.
That sounds vague.
But allow me to try and explain.
My friend Nancy, a talented poet and essayist, is blind. She has seen the rise of all sorts of technology from computers, to tablets, to the gambit of “smart” devices. She has experienced that when looking for accessibility, those helping her (whether it be staff at organizations for the blind or everyday customer service employees) view people without what they deem standard technology— smart phones, online banking, PayPal, computers— as lazy, poor or stupid.
I’m thinking about this, in part, because of the podcast A is For Abled. I listened to the debut 2019 episode (recorded on October 6 which the podcaster announced is world cerebral palsy day) at the Stitch Fix Bizzy Hizzy last night.
I am realizing more and more that platforms that YouTube, Spotify, Facebook, etc., provide more and more opportunities to connect with real people so many of the “products” people put out there are amateur. And I am not knocking on that.
But when people talk about there experiences you need to keep in mind that memories are not the best source of fact.
The first episode of A is for Abled discusses the host’s background— Kyle, his sister Cheyenne and his mother have a pretty comprehensive discussion about their family attitude toward Kyle’s cerebral palsy, his upbringing, public vs. private school in regards to disability resources and quality of education, sibling relationships, the various therapy and surgeries Kyle has had and society’s reactions to disabled children and more specifically Kyle’s gait, which they call “swagger.”
Kyle was 32 in 2019, so this makes him more than a decade younger than me. His mother was 19 when she had him and he is the oldest child. They are also African American so they make some comparison/contrast between society’s reaction to the disabled and the reaction to African Americans.
Apparently the show has completed two seasons. And it sounds like Kyle’s condition is very similar to mine.
Between his family, his therapy, his various exercise classes that his mom encouraged him to try (yoga, aqua aerobics, tai chi), private school and surgery, Kyle had a lot of interventions I didn’t have.
Things A for Abled pointed out (I have not fact checked these statements):
Like Karen Killilea (if you don’t know who I am referring to I talk about the Karen books here), Kyle had surgery (twice) for his hips to straighten them.
People with cerebral palsy often develop arthritis in their thirties.
People with cerebral palsy get worse as they age because the muscles and tendons continue to tighten. That’s why physical therapy and stretching is so important.
Hot Yoga not only provides the much-needed stretching and flexibility but also the heat automatically loosens the muscles.
To explore A is For Abled, find their website here.
These books are directly related to my quest to researchcerebral palsy, a disability I have, and chronicle my journey to whole health. With discipline, hopefully I will lose weight, return to strength training and someday pursue my longstanding goals of running a 5K and hobbying as a body builder.
Below please find my original interactions from the first memoir, Karen, by Marie Killilea: Starting the Karen Books.
As I said then, I thought this memoir would be about Karen. And her struggles with cerebral palsy. A condition no one knew anything about at the time.
Now this is not a complaint, but the book is about advocating for a child with cerebral palsy and Marie Killilea’s struggles as a mother— a mother with a history of pregnancy loss, devout Catholicism, children both precocious and sickly.
Karen is merely a two dimensional figure in the background. And the book chronicles many of Karen’s tribulations (limiting fluids to 20 ounces a day to prevent seizures and reduce spasticity, sores and discomfort from what would now be seen as barbaric full-body braces, and despite her keen intellect being banned from school) as well as her developmental triumphs.
The book ends with one such celebratory moment.
In the passage photographed above, Karen tries to navigate a hill. Mrs. Killilea never quiet explains where she was going— to the house? Away from it? Karen throws her crutches down the hill, rolls, retrieves her crutches, falls several times trying to get up, while her family watches and records it on a neighbor’s home movie camera.
This is one of those moments touted as bastions of independence. But how many times do you want someone fall without at least asking if they want help? And this is solely my opinion and my experience, but I hate seeing myself on video. The camera makes the “wrongness” of the cerebral palsy body more exaggerated and severe. Her parents want to record this moment in their Pride, but, to me, and again this is my opinion, to rewatch such a moment is to buy tickets to the freak show.
This family had inordinate health struggles with all of there children and the work Mrs. Killilea did to benefit cerebral palsy research made the world grow exponentially. And I am grateful.
But as I study the first chapter of Mrs. Killilea’s sequel memoir, With Love From Karen, it leaves me feeling that Karen’s condition has led to a 1952-best-selling book that has eased her family’s burdens, allowing them to buy a big, broken down Victorian house and given them a life line after a decade of medical bills for all their children.
I feel like Karen is exploited. Especially upon hearing that the whole family appeared in Time magazine.
Also I note Mrs. Killilea’s writing style has improved. The sentences flow with more artsy grammar and word choice. The description is more detailed. The verb choice strong.
Does she have an editor working for her now?
Bean, the 50-plus pound mastiff mutt puppy, and I are in the hammock. I hope this book presents Karen as a person, not an accessory.
Yesterday I had hoped to do more editing on the bits and pieces left of the near-final manuscript of Manipulations, the first of three novels by me, coming soon from my little publishing imprint, Parisian Phoenix.
But then my graphic designer partner in crime (and this endeavor) encouraged me to start Karen by Marie Killilea. The book was in its 11th printing by the mid-sixties and I am reading a copy from about 60 years ago.
It’s part of my recent quest to understand my cerebral palsy, which ironically led to me discovering that my anemia has reared its ugly head. So maybe this quest isn’t addressing physical needs as much as emotional ones. And the neurologist’s office did return my call. My appointment is January 13. Yes, in six-and-a-half months.
While I certainly understand what these parents must have gone through (Karen was born in 1940 and died in 2020), this certainly was a different era. An era of institutions, a lack of knowledge and families and doctors sitting around smoking cigarettes together.
But so far, and I believe Karen is now 4, Karen is described as beautiful, but presented as a thing in the background. The memoir so far is about the mother and her thoughts and parenting techniques and her interactions with the medical community.
To me, the way Marie describes placing her in the backyard and going in the house to do chores… well, Karen slowly pulls herself by her arms inching toward whatever is of interest. The current chapter describes her playing in a mud puddle. She sounds like a fish caught between land and sea.
Honestly, to me it sounds cruel. I’m sure it fostered independence and strength but damn it sounds grueling for Karen. This is the beginning of the ideology of mainstreaming kids with disabilities— toss them in and let them adjust. And as young people with disabilities, emotions and intellect are still immature. So it is cruel in my opinion to let these children struggle with the physical, too. It’s this weird we get that we are different but we don’t have the life experience to understand why or how and while allowing a child to figure it out raises a fighter and someone not prone to accept help or pity, it would be nice to have some framework other than you can or cannot do something or are or are not like everyone else.
I see a potential multitude of nonfiction book projects in my future. My memoir will need to be three volumes: my childhood, my “squiggly” career (yes there is a term for people with eclectic careers like mine), and this health quest.
Speaking of non-fiction, I would like to publish my honors thesis from Lafayette College and do an anthology where I have select authors/artists to explore what I will refer to as identity politics. I have mentioned it to Nan, my blind friend, and Bill, my horror-loving freak friend, and both love the idea. I encourage you to read Bill’s novels, The Kink Noir series, which blend a dark 1940s detective vibe with kink and erotica while exploring some topics about what it means to be human.
My review of Bill’s most recent book is here: Debauchery
Speaking of Bill, my flower workshop got postponed last night, so Bill, fresh off of jury duty, came down to catch up and have dinner at the always charming Porter’s Pub in Easton, Pa.
Rib eye with Jameson’s Demi-Glace
Armed with the news that my iron is low, he bought me a steak and a lemony-smooth gin martini.
Upon arriving home, I finished taking out the garbage and recycling including two more 13-gallon trash bags from teenager two’s room. It looks like she’s officially ghosted me, and that makes me sad.
And I let the dog sleep with me. And as my room is the front room, she heard every noise in the neighborhood.
This piece will also include discussion of the mental health app Ginger and a review of a probiotic carbonated beverage.
If you’re new here… I am a 46-year-old single mom who volunteers with a local cat rescue, has a bratty Goffin cockatoo, and is currently trying to learn more about my own cerebral palsy.
The Teenager is on Day 2 with her grandmother in Cape May, a trip the teen has been planning since she starting working as a waitress this winter. I am home alone with her dog, our four cats, my birds and five fosters.
Yesterday after weeding, Extra Crunchy thought my sweaty, outdoorsy smelling body was a wild animal. (He is available for adoption; he’s a miracle kitten who survived distemper. And has the most soulful deep grey eyes.) Video: Extra Crunchy Attacks My Dress
Meanwhile the dog ate the case to my air pods while I was listening to Alex Hooper’s podcast Achilles’ Heel and making vegetable stock.
I had my second Ginger session yesterday with my coach. I still had the feeling many of her answers were stock, and that sometimes she may have been balancing more than one client at a time. We ended up talking a lot about how because of a dip in self-worth can cause discipline related and motivation issues— why should I take care of myself and commit to good habits if I’ll still be the same insecure person no one seems to value?
But I did do triceps and shoulders yesterday despite intense heat here.
An old friend popped by for a text last night and the nostalgia made me cry. Perspective is a beautiful thing, and sometimes we all need to remember behavior viewed as “bitter” can come from hurt or anger. Understanding can make a huge difference in an interaction.
By 10 pm, I couldn’t end the circle of thoughts about regret, hurt and the pain of seeing someone you once cared about experience something you know isn’t good for them.
So I texted an evening Ginger coach. At first the answers seemed stock and that she was copying/pasting and distracted by other clients, but that rapidly changed. And she and I had a good discussion. It was only about 20 minutes but it ended the loop of thoughts in my head.
I definitely think this service will help keep me focused with my therapist and allow me to get help for the more everyday issues as a situation is happening. Being the curious type I am, I want to know more about how the system works for the employees.
Of course, with the teen being gone, the dog is sullen and bereft. Last night she kept checking if the teen had come home yet and it was very difficult to get her to go to bed in her crate in the teen’s bedroom without the teen.
At 5:40 am the poor dog starting crying, so I went to her, got her out and took her to the yard and just let her stay free in the house. There was no way I was getting up with only 5 hours sleep.
I woke to find her in my bed with me and I actually liked knowing where she was. We got up for the day at 9.
As I drank my cup of coffee and starting feeding animals, my primary care physician’s office called. They are concerned about my iron and the doctor wants to schedule an appointment to discuss me going for a GI work up.
Now about a decade ago when I switched to his care, I did so because my doctor at the time to refused to treat my anemia. I had stress-induced super heavy menstrual bleeding that had reduced my stored ferritin to a 4. The nurse in the office at that particular doctor said that the adrenaline in my system from the stress is the only reason I was walking around and not in the hospital.
I had a three-month wait to see this particular new doctor. By the middle of the summer I literally could not get off the floor unless my-then five-year-old made me a pot of coffee and brought me a cup.
I called my OB/GYN and begged his staff to help me. The nurse practitioner saw me a day or two later and I left his office with a bag full of prescription-strength, special absorbing vitamin D and directions to take an iron pill with every meal.
So after two years of stress, and my period is still heavy, and eating mostly junk food for the last year, I don’t think we need a complete GI work up to fix this. When I see the doctor, and his residents, I’m going to ask if we can see if diet and supplements will return my numbers to better levels based on whatever deadline he prefers.
But it has me suddenly thinking— the recent falls, issues with hitting my numbers inconsistently at work (I literally said to a supervisor “somedays I just can’t make my limbs move faster.”) I have been blaming being out-of-shape and lazy and my disability for some recent issues, but compounding that is anemia.
And I honestly can’t remember the last time my iron was checked. The only reason he checked it now was because I reminded him of my history of anemia and that if my vitamin D was low, the two go hand-in-hand. And the highest my vitamin D has been in the last decade was 37. 30 is the lowest vitamin D result that counts as normal.
(By perusing my online medical regards I learned I don’t nor have I had HPV, HIV or Chlamydia.)
And this was all before coffee.
After coffee, I put on my favorite sun dress and ventured into the 90 degree heat (at 10:30 a.m. — that’s insane.) I walked over to Nan’s apartment six blocks away to bring her the Seeing Stars super soft lounge set/pajamas I bought her at the Stitch Fix Bizzy Hizzy. Giving a blind woman things with nice textures is always fun.
I walked home, sat for a minute and left at 11:15 to walk to CVS to pick up the teenager’s prescription toothpaste before they restocked it. I treated myself to a Booch Pop withmy 40% off coupon. It’s a carbonated probiotic drink of only 40 calories that tasted like a zesty ginger beer.
There was also a coupon for free candy so I got a generic assortment of Gold Emblem Swedish fish and a trail mix with pistachios and almonds on sale for $2.99.
I stopped at our public library. Our library opened in 1962 so in our archive “stacks” as they are called we have the original hardcovers of the “Karen” books which were bestsellers in the mid-sixties. The adult librarian asked me if I would prefer she find a newer edition and I said no. The originals add to the experience.
I came home with 5,000 steps done from errands and made Bean and I breakfast of chicken, eggs and rice. I put some of my fresh vegetable stock on my rice.
I may have said this before, but even if I have it’s a message that can be said again: I am blessed to have a talented and caring medical team. In addition to this team, I have also been harvesting resources for my physical and mental help.
I am recording this week’s journey so others might consider different ways to find their own resources.
On Monday, the teenager resumed therapy with a new therapist who attended Moravian College at the same time I did and is loosely a friend of my traveling companion M.
I asked if she was comfortable treating my daughter, because we have circulated in similar arenas in the past and my 17-year-old daughter struggles to connect with therapists who work with teens and is too young for a therapist who treats adults.
From what I knew of her personality from the few interactions we’ve had over the years and the information on her web site my gut said she would be a good fit for the teen.
And in my teen’s eyes, I was right.
My daughter is far from a troubled teen, but she has two parents with disabilities, a mother with trauma in her background and an extended family history of addiction.
Her strong empathy and witchy powers can make her experience of the world intense. (Speaking of which— I gave her my tarot cards on her birthday and she cried. I knew she would understand the significance of the gesture but I didn’t expect her to get so overwhelmed she cried.)
On Monday and Tuesday, my work performance wouldn’t crack 88%. I was frustrated and in pain and just moving slowly. After mapping my pain patterns for years, I can say that my back pain is worst when I ovulate and when I menstruate.
Wednesday was, as mentioned in other posts, the teenager’s 17th birthday. I had a tele-appointment with my therapist of about 12 years. Coincidentally I discovered his birthday is the same as my daughter’s. That’s just another reason we get along.
It’s fun to have a professional in your life for a long time like this because I get to see his practice grow and develop, sometimes in parallel to my own life.
I recently took the ACE Childhood Trauma test, which gave me a different outlook on some of my experiences. My parents did the best they could, but they had their flaws and their own battles to fight. So between their own struggles and life events they couldn’t control, stuff happened.
I can’t explain why it’s time to face some of this now, but that’s the way things go sometimes. We all come to certain aspects of self awareness in our own time.
On Thursday, I visited my beloved chiropractor, Nicole Jensen at Back in Line, who leveled things out, told me I was stressed and talked with me about different physical therapy stretches I need to do to fight the pain. We both agree that the pattern of pain increases on those certain days in my menstrual cycle.
I came home and ate cake and ice cream for breakfast. Not the best decision as I have been 20 lbs overweight for a year.
I suddenly remembered that Stitch Fix offers employees access to the Ginger Mental Health app. So I made an appointment for an initial consultation for Friday.
My hope was to use Ginger’s coaching to set goals and recreate/spur my discipline and good habits regarding food and exercise. For instance, I haven’t lifted a barbell in a year. I miss strength training. I still think I could be an excellent body builder.
My Ginger coach is Kathryn, who has a master’s degree in social work. Our session, completely done over text, seemed to be two sessions in one.
The first hour, she asked basic questions about me. The second hour we set up a plan of the topics we’d like to address. This week we will start making and implementing goals. It doesn’t always feel like talking to a human, though the occasional grammar or spelling error reassures me that it is a person on the other end.
Some of her thoughts include: “Sounds like a great idea! So in your case, a plan I might suggest would be to start by addressing your feelings of stress, [being] overwhelm[ed], and lack of motivation by incorporating mindfulness into your daily routine, which can help bring some relief from challenging emotions and help you see more clearly how your thoughts and emotions are impacting your behaviors so that you can feel more grounded, intentional, and comfortable being yourself. This can also include exercises centered around relaxation techniques, positive distractions, mindful awareness, developing awareness of triggers (when feeling stressed and/or overwhelmed, taking time to notice what the root cause is and look for a pattern), pattern recognition, scheduling and time management, and identifying and building on your current strengths and resources. We can also discuss accountability/working with providers (i.e. therapist and coach) and explore sleep/exercise/diet as needed.”
A lot of that feels copied and pasted, but it’s okay in my opinion. Sometimes just having someone help you pick a direction or even commit to a new direction can be the change you need.
Also on Friday, our dog F. Bean Barker got spayed at Canyon River Run, a vet we really love.
On Friday night, I learned a new work center at the Stitch Fix Bizzy Hizzy— style carding. My colleagues cheered me on in learning this new role and I very much enjoyed it, even when my computer monitor broke and I had to use a computer on another line and lean way over to grab my boxes.
Basically, the associates who “style card,” grab all the completed fixes that come off the QC line and use the packing slip to print a style card that includes a personal note from the stylist and lists each piece in the fix and offers examples of how it can be worn.
Working with anywhere from 6-8 fixes at a time, the “style carder” folds the packing slip and style card and places them into an envelope before returning them to the box.
A quick check that the box is correctly wrapped and the style carder lines up the boxes and shoots them down the table onto a metal conveyer line operated by sensors. This takes the boxes to “OB1” or the outbound/shipping department which inserts the return envelope, tapes the box shut and prepares the boxes for mail pickup.
The pickers assemble 920 items a shift, which breaks down to 184 fixes. Each QC associate folds and packages 130 fixes a shift, each style card associate aims for 900 fixes a shift, and the Bizzy Hizzy itself ships about 6,000 fixes a day.
During this time, our tasks are fairly simple, automated and monotonous so we are allowed to listen to podcasts or music. I’ve used the time to explore a lot of topics via podcasts on Spotify.
Spotify is still a new platform for me and it’s slowly gaining exclusive proprietary rights to a lot of the podcasts I listen to. I heard on several news broadcasts that Spotify paid 60 million for Alex Cooper’s “Call her Daddy” where she talks about sex often with an emphasis on blow jobs.
I listen to her because she has some funny stories of the ridiculous escapades she has had: dating a professional athlete, offering blow jobs as a way to sneak into sporting events, etc. But she also sometimes interviews people— like a retired Playboy bunny who left the Mansion and points out the realities of such sexual exploitation. Alex can be really insightful but she also can misuse her vocal range to try and make the podcast more interesting to listen to and that hurts me ears.
In addition to Kristen Bell, Dax Shepherd, Mayim Bialik, and Conan O’Brien (and in addition to the news and fashion), I searched for cerebral palsy podcasts. From TheMighty.com, I learned that the name “cerebral palsy” is an umbrella term for several brain-related disorders. And I don’t really know anything about which CP I have.
I learned CP can interfere with the neurotransmitter GABA which is why our muscles and our brains don’t communicate effectively. I learned that muscles that don’t get used correctly and don’t get the right messages can stiffen and become spastic. This causes pain and lack of control.
The two main classification differences I have heard are hemiplegia and quadriplegia which you may recognize from the words paraplegic and quadriplegic. These terms explain the parts of the brain/body affected. I would assume I have mild hemiplegic CP, as I think it only affects my lower body. But sometimes I think I see it in my hands so I don’t know. And I think I am low spasticity as I seem to have fairly good muscle control for someone with this disorder.
But I don’t know. So I did what I like to do, on Saturday, I called Nan. If you don’t know Nan from this blog, she is often my partner in crime. She has been blind since birth. Like me, we were raised in able-bodied families and never knew life any other way.
Nan is older than I and, despite her disability, has lived independently for most of her life. She attended college. She married. She has a hobby writing career and attends poetry open mics. She was a teenager when NASA put a man on the moon, but despite having never seen the moon, she has been fascinated and following the advances of NASA ever since.
Nan is closer to my aunt’s generation than mine. My aunt has what would now be referred to as developmental delay, but what was called the now insensitive term “mental retardation” in her day. In school, she didn’t learn what the other kids learned. She had basic reading skills and could add and subtract but never learned to multiply or divide. I know because we used to play school, except I really taught her things.
My aunt, then a few years later Nan, and even a few more years later me, we were all part of 20th centuries advances. Medicine had found ways to help us survive, but technology and society had not discovered ways to help us thrive.
None of us have thick medical files that detail the specifics of what is wrong with us. You were thrown into the mainstream to sink or swim. And if you couldn’t swim, you were institutionalized or kept home. Therefore, families didn’t talk about disability as much as they pushed functionality— they urged us to act as normal as possible and pretend the differences about us were not even noticeable.
I mentioned some of this to my primary care physician when I transferred to his practice more than a decade ago (some friends and my therapist recommended him). At that time he guided me to specialists to explain what is wrong with my specific body, but I am realizing now that he might not know that I know nothing about what my disorder is.
So, also on Saturday, I emailed my doctor. I asked him to help me find someone who can talk to me about cerebral palsy. I know children with the disability in today’s world work with a pediatric neurologist.
And it hasn’t all been work and reflection. My daughter and I got mani/pedis for her birthday/upcoming trip to Cape May. It was our last appointment with “Nails by Bethy” at Hyperion Salon. Beth has a new full time career that should offer her more stability and room for advancement.
We met Beth 12 years ago on the same date she ended her nail career. And the teenager and I got to be her final clients.
And yesterday I tried the new strawberry popping bubbles at Dunkin. I had them in an iced matcha latte. I must say, this is the best matcha latte I ever had at Dunkin but the bubbles had such an artificial strawberry flavor it tasted like someone poured chunks of jello in my drink.
If Dunkin’ wants to capitalize on the boba trend they should stick to normal tapioca.
Item one: Mama Periwinkle “Wink” Budgie Bird died probably June 3, in the wee hours of the night. She appears to have died peacefully in her sleep. Teenager #1, with her witchy energy powers, agrees.
Item two: Teenager #2 graduates from high school tomorrow.
Item three: the overtime at the Stitch Fix Bizzy Hizzy has caught up with my body. Last night, the combination of work and the subsiding hormones of my menstrual cycle made my discomfort so intense my knees were shaking as my body tried to compensate for the pain in my lower back. Which, I survived thanks to fun messages from one of my neighbors and photos like this one of my daughter’s dog:
F. Bean Barker
Item four: My supervisor and the person who hired me surprised me with an observation last night. I told her I wasn’t feeling my best but would gladly see what I could do. I scored 144%. I think we were both astounded. She did the observation early as she was taking the rest of the week off for her birthday.
Item five: and somehow, on her birthday, despite still having pain (but now the kind of pain that follows the chiropractor not my everyday pain), I met my QC metrics for the first time ever. That means I folded clothes and prepared 130 different boxes (fixes) for the Stitch Fix clients.
Goal!
Item six: I think foster cat Louise is part giraffe.
I don’t know what’s the better feeling— taking off your socks and shoes after being on your feet all night or removing your bra.
I’m in pain tonight, numerically probably only a six, but the discomfort is debilitating. That does quite make sense to me. I’ve hurt more but felt less uncomfortable.
It’s almost 1 a.m. My S1 joint has been giving me trouble all night so all of those muscles are on fire. I poured the last of the Pink Whitney vodka as I ponder my other aches and pains—my right knee, a pulsing pain in the ankle I broke six years ago. The angle I am sitting at right now hurts. But Fog is curled up against me and I don’t want to move.
But I did walk the dog. That felt good. Stretching all those sore parts.
The dog— her name is Freja but Teenager #1 wants to change in to Bean. I suggested F. Bean Barker. She’s doing well. Went to the bathroom outside for us today and less accidents in the house.
Speaking of accidents, I packed up the homemade ham broth and kept pouring long after the container was full. That made a mess.
Then I tried to fry some eggs and started a small grease fire. I extinguished it, but not before teen #1 yelled, “Mom? Is everything okay? I just saw flames everywhere.”
But back to the Bizzy Hizzy at Stitch Fix. I had a “talk back” meeting with some of my leaders. Again, explaining that QC hurts. Talk of doing 4 hours in QC and 4 hours in pick when they roll out split work centers.
And they want me to hit 130 QC fixes. That’s 3 minutes per fix. Tonight, between meetings and pain I only did 91. I did 104 last night. That is 3.63 minutes per fix. Tonight I ended around 3.8.
In better news, my MacBook Air came. Tomorrow I hopefully can do my local taxes (state and federal are done and filed) and work on Finding Hooyo, the Romance/War/Medical novel I would like to be the second book published by Parisian Phoenix Publishing. Manipulations, the first novel for our little imprint and the first novel of the paranormal/romance/chick lit Fashion and Fiends series should be in design now.
If you want to see me unbox the new Mac, the video is here: Unboxing
Yesterday was the first day of my second full week back to work since having had Covid-19. It was also the first week of mandatory overtime at the Stitch Fix Bizzy Hizzy.
I left home feeling disconnected and anxious. I had volunteered for a 1:30 p.m. to midnight shift, assuming I would be well rested and up early enough to get to work at that time. Some of my peers had taken on a 12-hour shift— 1:30 p.m. to 2 a.m.
They had so many people in the building some of us had to go to pick, which is my favorite role. I haven’t “picked” with any gusto since before my illness.
It felt amazing to be on the warehouse floor. I was peeling off layers and picking at about 21 minutes per cart of eight fixes. Again, not the fastest but decent. I walked 6,000 steps in that 2 hours and there wasn’t a moment of struggle or discomfort among them.
But when I peeled off my top layer, I discovered my tank top was inside out. I had a sports bra on so I decided to fix it. Except I got all twisted up in the pretty straps.
So my wardrobe malfunction impacted my times.
After first break at 3:30 I found myself in QC. I had a hard time getting organized and started— so it was probably 4 p.m. by the time I got rolling. I folded and packed 74 fixes. Which averaged to about 5 1/2 minutes each. I need to get that under 4.
I had told my trainer my goal was 80. I said that because Friday it had been 75 and I hit it. And I felt sluggish on Friday so logically 80 was doable.
My trainer didn’t care. My numbers have been consistent and I feel like my fixes are getting neater, my wraps better and the whole process seems to have a rhythm now.
Thanks to my time in pick, I walked more than 9,000 steps yesterday. I ate deliberately, trying to balance high doses of protein with refined sugary treats so I could get the buzz I wanted.
I took a Tylenol (just one) at one point as I did have some spinal pain. At the end of the night, my favorite nurse commented that I “looked good” and indeed I felt good— not like someone recuperating from a virus and working an 10-hour shift in a warehouse with a malfunctioning body (thanks cerebral palsy). I honestly felt good.
I weigh exactly what I did yesterday after several days of losing weight. I still need to lose at least 15 pounds. Or buy new clothes.
Forgive me if this post contains typos or other errors as it is literally 1 a.m. and a wage of fatigue just washed over me. I think I might be too tired to write this.
Last night, the work center board at the Stitch Fix Bizzy Hizzy proclaimed that I would work QC.
QC is the quality control work center. Once the fixes are picked, the QC team inspects and folds the pieces and prepares them for the shipper.
It is the most stationary, sedentary work center I have worked in so far at the Bizzy. But I like it—except it kills my spine. It causes me a lot of pain to stand still for 8 hours. And yes, the give us mats and offer a variety of table heights to make it more comfortable.
After our two hours in training, I packed 36 fixes at a rate of 8+ minutes per fix.
Tonight when I arrived at work, scheduled for QC again, my favorite nurse asked how I did in QC last night. I told her it was hard on my S1 joint (she already knows I have cerebral palsy) but I liked it. But then I like to learn new things and face new challenges.
Now I don’t remember her exact word choice, but she commented on my good attitude and the fact that I am “always happy.”
I fought years. “Thank you for seeing that, as I’m having a hard time right now.”
And she offered me prayers.
Then she commented on how I try to do everything, and I shrugged and reminded her that this was my whole life— that I’ve always had a disability so things never come easy.
And then she pointed out that in her line of work she’s seen people give up facing less.
With that pep talk, I headed to QC valley 2. Now tonight I was on the right side of the valley and liked it. I QC’ed a total of 59 fixes at a rate of between 5.9 and 7.2 minutes per fix. Only two of my boxes were returned and both were do to issues with the paper. A supervisor told me nice folding! And I even tried to highlight whatever was pretty in each fix/folded item.
One of my early fixes— paper looks loose
One of my very first fixes— and I finally have my own box
Training in the Yuengling room—that rabbit is creepy
I wore my overalls tonight
It peels the stickers!
On first break I took 400 mg of ibuprofen to help prevent back trouble. And it helped! Or maybe I just really am getting stronger post-Covid.
At the end of my shift, I was hungry for chocolate so I grabbed a chocolate chip Pop Tart. As I was walking out, my favorite nurse offered me a cookie.
I didn’t want to touch her cookies, so she piled some into a tissue while using a tissue as a glove.
Best thumbprint cookie ever
And I never tasted anything quite like that thumbprint cookie. I haven’t had thumbprint cookie in years.
I went out to my car and found one final surprise; my mileage was 33399. I like numerical patterns and that number sequence was super cool.
33399
So the day that had a rocky start had a strong finish.
Yesterday I returned to work at the Stitch Fix Bizzy Hizzy after 3 weeks out with the Coronavirus.
I worked an eight-hour shift processing women’s returns. It was a new work center for me and I’m frequently amazed at how many work centers I haven’t learned. It sure make what could be mindless, monotonous work more interesting to slowly learn everything in the building.
I haven’t really got to know anyone well at Stitch Fix though I am consistently surprised by everyone’s kindness. Today I wore a cropped sweatshirt and one of my colleagues whom I don’t know at all chased after me worried that my exposed back would leave me cold. She then realized I had a beige shirt on underneath and chuckled, only to still tuck my sweatshirt under the strap of my little pack.
Speaking of making friends… The nursing staff usually changes over after the evening shift clocks in. The day shift nurse is the sweetest, most outgoing person. I imagine in other settings she would have a wonderful bedside manner. She said she was worried when she hadn’t seen me in so long and me being me said there was merit in her concern as I had Covid.
Then she peppered me with questions about my symptoms and my experience.
But after we clocked in, she didn’t leave. She did the regular rounds through the warehouse. And she made it a point to check on me every time— and make sure I had the stamina to make it the whole shift and that I was drinking water.
I ended up processing 252 pieces which is probably a mediocre number. I felt like I had worked a 10-hour Black Friday shift from my Target days, and all I did was stand there. But standing is hard for me since my cerebral palsy has made my body crooked and led to issues with my S1 joint. AND two weeks ago I felt like I had run a marathon when I walked the 20 feet from my room to the bathroom.
My only Covid complication was having a prolonged coughing fit during our meal break when a piece of Raisin Bran tickled my throat wrong and I couldn’t stop choking!
Today when I arrived she asked how I was feeling, and how I slept last night. My supervisors keep asking how I am as well. They didn’t have me assigned to a department so I ended up in direct-pick. It felt so good to move!
As for tonight’s numbers, I picked 64— which is half the bare minimum number they like. But here is the good news: They let us go early so I only worked half a shift. My step count remained consistent with my pre-Corona figures.
One interesting fact, in addition to my weakened fortitude, is how challenging it is now to wear my mask especially while performing labor that gets my heart rate up. The nurse encourages me to wear the lighter disposable masks so I can breathe easier and not get so “hot” (if that makes sense).
I’ve also kept my calories at around 1500, with a lot of good protein and wholesome foods which, as I increase my activity levels should lead to some improvement in my current weight and fitness struggles.
My heaviest weight ever— not including pregnancy— I hit last week at 154.5. I’m not even 5’ 4” so that is unacceptable. But today I was 151.5. I managed to lose three pounds so far by tracking my macros and calories.
So now, with work done, I am celebrating as only a mom would. I started a load of laundry, fed the cats, ran the dishwasher and while I wait for the wash (which I will need to take down yesterday’s loads and hang tonight’s) I will pour a gin drink and watch The Tudors with my cockatoo Nala.
The teenager should be home around 10 from her pet sitting job. Teenager two will be going to visit her mom to watch the ball drop.
Angel Ackerman 