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 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.
It’s been eight days since I last posted, in part because of the mandatory overtime at the Stitch Fix Bizzy Hizzy. I had some scheduling difficulties regarding the commitment and had scheduled 13 hours of OT this week and 5 next week to meet my minimum commitment of 16 hours. I was told last night that I had misunderstood the communication and we had to work 8 hours each week.
So now I will be working 10 hour days and 9 hour days for the upcoming week of my birthday.
My Silk & Sonder planner which was due to arrive May 7 is still not here with no update to the tracking information. I will probably receive the June volume before the May one. They warned this might happen, but I really really hoped to have it for my birthday. It seems like the right time.
I bought some new gel pens at the Grocery Outlet and it’s been fun experimenting with colors.
Working so much overtime reminds me of the simple pleasures in life—
When you’re working mandatory overtime, it’s okay to buy coffee out. Even better if you find good deals.
Teenager #1 ordered us food from Tic Toc Diner for after her shift and my shift. We had a picnic in the backyard.
I have missed having my nails done. Having them done (currently I have birthday unicorns) bring me joy.
There was a new season of Hoarders on Netflix. That show is mesmerizing and terrifying at the same time. I once went into a hoarded house. I have huge admiration for the people who work with those who suffer from hoarding disorder. That one experience was enough for me.
Teenager #1 introduced my blind friend Nan to Spotify. Hearing Nancy’s enthusiasm and seeing my daughter’s altruism really cheered me.
I had an observation at work where I scored 101%.
Fresca is a fun soda.
I ordered a new pair of jeans. Button fly. Because I love button fly. I hope they fit. I bought myself some things at Rainbeau and Stitch Fix and am slowly transitioning to a casual versus professional wardrobe.
Teenager #2 gave me socks for Mothers’ Day. And even hand-selected every design on them!