This is an informal update vaguely and disorganizingly (that’s probably not a word, but I like it and it’s how I’m feeling) connected to my series about my cerebral palsy.
It’s not as “official” and well-crafted asI would like as some household/parenting issues greeted me as I walked in the door and I found it hard to recover once the dog started refusing to get in her crateand I discovered the teenager’s floor with multiple piles of kitten vomit, into which I stepped barefoot.
I finished the sequel to Karen by Marie Killilea today— With Love From Karen. That is another blog posted which I started but have postponed due to other events of the day more personal.
Late last night, I reached out to a local personal fitness trainer.
For those of you unaware, the average physical therapy can cost $350 per session, with the uninsured paying $125. If you have, like I do, high deductible medical insurance, this can add up to several thousand dollars in as little as a month.
Been there. Done that.
My amazing chiropractor (Nicole Jensen, Back in Line Wellness Center) bills me $125 a session when she gives me some brief physical therapy, advice and cracks every f*cked up bone in my body.
The high end of average cost for a personal fitness trainer is $70 per session, according to Google.
Six years ago almost to the day, I embarked on my first weight loss journey and shed 30 lbs in six weeks and looked like a skeleton.
By autumn, I looked like this:
Yes, the shadow of a person lifting two pound weights with me is the now teenager as an eleven-year-old.
I have two fitness dreams:
To run a 5k
To be an amateur body builder
A local business, a fitness trainer only a few blocks from my home, has a summer special and good reviews on the internet.
Goofy crop is to obscure the identity of the trainer until I get permission to post.
I reached out with this message:
“I have quite the history of on again/off again weight training.
I went through a very emotionally traumatic loss of job experience in 2020 and turned to stress/comfort/ just plain bad eating and have gained 20 pounds. And stopped training.
I need to regain my discipline so I am hoping to see if you might be a good fit as a personal trainer— theoretically one session a week and I could maintain the effort at home.
I have already improved my diet, but the damage includes anemia so that makes it hard to work out especially in this heat.
I work second shift in a warehouse.
And perhaps the most important issue— I have mild cerebral palsy in the lower body so it’s super important that I keep my body strong and flexible.
I have two dreams— to actually run a 5k and to perhaps pursue amateur body building.
Please respond if this is something you might be willing/comfortable with/knowledgeable enough to undertake.
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.
I (and teenager #1) started the day receiving our newest foster cat, Touch of Grey.
So, here’s the thing about cats. Dogs are lovable, forgiving and devoted. They want acceptance, love, and structure. Cats don’t forgive. They are more aloof and nervous and neurotic.
The same cat— example: Touch of Grey— will react strongly in different environments and will remember whatever you do to “wrong” them. She is approximately four years old, FURR had her spayed. She is a newer addition, an owner surrender because of a move.
She has had a couple other placements. She seems happy here. Cats really a lot on body language to communicate. Her signals are very strong. If you heed those warnings, life is good.
I haven’t seen her bitchy side yet, but others at the rescue have. I don’t relish the day I have to crate her.
But this is her a few minutes after we spent our first time together: Play with Grey
At 10:30 I had my regular chiropractor appointment at Back in Line Wellness Center with Dr. Nicole Jensen. For the first time in ages, I was pretty much level and because I haven’t been dealing with constant pain she was able to stretch out my hips more than ever before.
And Thursday night, I reached a new career personal best at the Stitch Fix Bizzy Hizzy. I QC’ed 116 fixes.
When I arrived at work Friday night, I felt powerful and amazing. I looked forward to knocking out the shift and getting my nails done in the morning. My favorite nurse, my favorite QC/Style Card peer and I started talking about places open late at night, Waffle House, and potentially going out one night after work. Am I making new friends?
Even if nothing else comes from it, it felt good to be included in the discussion as a newer employee and in the Covid age.
Maybe I got a little cocky with the universe, because within a few minutes at my QC station, I moved wrong and post my chiropractic adjustment my body just said “nope.” I spent the rest of the night in pain. At about 4-5.
There’s someone at work who physically reminds me of a friend whom I’ve not seen in a while. That was bothering me. Not that the person can control their appearance.
And we had these new stickers that made the night chaotic.
To counter some of the chaos, the leaders hosted a “power hour.” This meant the different QC valleys would compete to see who could get the most work done in the hour. They blasted 80s music throughout the warehouse.
I knew every word to every song. And I didn’t even remember the songs. Isn’t that funny the way that happens? A lot of the music brought me back to childhood, and to middle school, and different events of the past. The emotional fugue dulled my senses.
The music included the song Elvira by The Oak Ridge Boys. That song, and I am sharing this video from a Grammy performance in 1982 (Elvira), used to be a favorite on the jukebox in every bar my parents used to frequent. I think the experience tapped my feelings of helplessness.
Between the pain and the new stickers, I only QC’ed 99 fixes. Though I did speed up as the night went on.
But then I got home— cuddled the dog, laughed at some comedy, made Mac and cheese. All is good.
Today turned out to be a completely ordinary but yet amazing day. I owe much of that to my chiropractor, Dr. Nicole Jensen of Back in Line Wellness Center.
I have been working with her more often since I started at Stitch Fix as I don’t want to live my life in constant pain as I did toward the end of my decade working for Target.
Nicole has a background in physical therapy so she can deal with my cerebral palsy issues, messed up S1 joint, and get all that tension out of my neck. (I never even told her about my tendency to hold all my tension in my neck— she noticed.) She also gives me ideas on what to do at home (like which of my physical therapy exercises and what new stretches).
And funny story— she’s even worked on one of my fingers (after my cat bite/hospital stay for cellulitis this past August) when it wouldn’t bend and once she adjusted a toe for me. I can’t quite remember why…
So today Nicole did what she termed some agressive work on my hips as my main complaints these days are more about stiffness than pain. Now don’t get me wrong— QCing (standing still folding clothes from 3:30 pm to midnight) makes me hurt. And picking also makes me hurt. But both those pains usually fade by morning leaving behind stiffness that can be quite uncomfortable.
I am very grateful for Nicole, as she has done more than any other person to help me understand how my body works because of my disability.
When I left her, I felt like someone had popped off my legs as if I were a Barbie doll and popped new ones on. They didn’t feel bad, they just felt loose and new and weird.
And I didn’t experience any pain at work, at least not the bad kind. I definitely experienced the discomfort of a good workout. Even bending down at the end of my shift wasn’t nearly as intense as usual.
And I walked more than 26,000 steps (but only picked 693 items).
For Saint Patrick’s Day, Wawa had given me a free matcha drink. There happens to be a Wawa across the street from the chiropractor so teenager #1 picked up a matcha mint latte for me.
I seem to be one of the first people posting on YouTube about Wawa’s matcha, so here is today’s installment: Matcha Mint latte from Wawa. This particular video has 18 views. Yesterday’s has 118. Spoiler alert: it was tasty but I gave it to the teenager as the fact that I couldn’t taste the matcha ruined it for me. But I would rate Wawa’s matcha better than Dunkin’s and akin to Starbucks.
Next, I took the teenager to the bank to open her first checking account. Even though the small bank I used has been gobbled up by a larger bank, I took the teenager to the same branch where her father and I opened our checking account in the late 1990s. I still have the account, in part because I am incredibly fond of my account number.
When we got home, teenager #2 asked me some questions about the differences between savings and checking accounts so we discussed banking. Teenager #2, a friend teenager #1 made in marching band who came into our home when she needed a place to stay last fall, turns 18 in about a week. Holy crow. A week.
In my household, birthday children get $100 and get to plan a day. I saved up $100 cash to give her— and, knowing this was my custom, she asked if she could use that money to open her own checking account. I responded, “of course.”
After all that, I made some ravioli and we all took turns cuddling with the dog.