I believe it is Wednesday. I’m fairly sure because the teenager keeps talking about taking the garbage out, and I had a chiropractor appointment this morning.
She and I talked a bit about the mental component of health and wellness.
My blog post yesterday reinforced it for me. The “do one more” mentality.
But at the same time—
No matter who you are:
Forgive yourself when your house is dirty. Sometimes you don’t feel well; sometimes you are emotionally stripped; sometimes you are busy living life and enjoying the ephemeral moments.
Forgive yourself when your values and what is important to you doesn’t line up with the rest of the world. Yes, I’m a crazy cat lady and I work in a warehouse even though I’ve had a professional career and lots of education.
Forgive yourself when you can’t keep up. Yes, people want you to do things and people need you, but sometimes you can divide a project that you could do in one day over four days.
Forgive yourself when you feel needy. Sometimes you have to ask for that hug or for help.
Forgive yourself when you want to be alone. Don’t guilt yourself if you need rest or merely some quiet time.
Forgive yourself if you aren’t where you want to be. Sometimes the journey goes unexpected places. Embrace it.
My daughter and I used to binge-watch the reboot of Queer Eye on Netflix— she loved the home makeovers, Bobby’s energy and style; we both loved Antoni and the food. Tan was adorable. And Jonathon is just a lovable force. And then there was Karamo, orchestrating something not quite identifiable as “culture expert.”
When his memoir, Karamo: My Story of Embracing Purpose, Healing & Hope came out (pun?) in 2019, Karamo Brown visited Lafayette College. The teenager’s father had him autograph a book for her and we excitedly attended a public lecture he gave on campus that night.
Almost two full years later, I finally finished the book.
I have recently resumed reading in general so the fault does not lie with Karamo.
The book is light, simple in phrase, and mimics Karamo’s speech.
It’s a coming of age story. It’s the experience of a Black gay man, son of immigrant parents, struggling to find himself, share his voice and help people.
He has handled so many situations others know well— issues of addiction, relationships, family, sex, parenting. He spent so long yearning to reach out into the world that he nearly self-destructed in the process.
He’s very respectful of other people, only talking about himself— not violating the privacy of his kids, his extended family or fiancé. He doesn’t share glorifying tales of his wild boy days, focusing instead of why he was behaving that way and what he learned.
He structures the chapters not chronologically but thematically which makes it easy to understand the building blocks of who he is and how he came to be.
And even before George Floyd and #BlackLivesMatter, he begged us as a society to listen to each other and be kind.
Author’s Note: This is the next inaseries I tend to run indefinitely on my quest to understand my mind, body and disability and how they interact as I age.
Also: This post is merely me pondering “out loud” andbased on my experience. I might be completely wrong with some of my ideas. That is why I consider this a quest and not something I can answer with a quick internet search or “Hey, Siri” request.
Finally, please understand that I am hesitate to discuss this topic as I don’t wantmy family members to be hurt or feel responsible. Especiallymy parents. My parents have some wonderful qualitiesand their flaws because they are, after all, human beings. My parents experienced their own hardships and traumas and they have both dealt with issues with their own parents, alcoholism, etc. Plus, my childhood encompassed much of the 1980s and they were young adults in the seventies. The world, as they say, was different.
As I have mentioned in early posts, disabled children of my generation and the one prior were the first to escape institutionalization or being kept hidden away at home.
Many parents of disabled children (like Marie Killilea of the Karen books) focused on raising their children to master independence and to “pass” as normal when possible. This can lead to a desire to not call attention to oneself and in many cases avoiding (instead of attempting) activities where our difficulties become obvious.
Instead of talking about our ailment(s), we try to fit in and not be a burden. We want to seem worthy of our place in a society where if the conversation turns to eugenics, we’ll, we’d be the first people edited out of existence.
But add childhood trauma to this mix and I wonder, do disabled people with this type of trauma exponentially feel more of a need to be invisible?
Mommy and Daddyhave trouble getting along and sometimes hit each other when Daddy gets home from the bar— I don’t want to be another problem for them.
Am I a victim of sexual misconduct because I was a good kid who would listen to her elders or because I was already broken?
No one wants to see me cry. They get upset when I fall down and cry. Mommy teaches me to laugh when I fall. Does this cheapen the legitimacy of the pain, the bumps and bruises.
None of my childhood trauma happened because I have a disability, but it’s another truth no one wants to talk about.
I ordered my first Silk & Sonder planner in May as a birthday present for myself. My June one got held up at the post office so July marks the first month I could fully use the planner to, uh, plan.
(To read about my previous Silk & Sonder experiences and their amazing customer service:
This month I have done less of the exercises, read less of the text and gave it less of my attention. Yet, I think the habit has rooted in making me deliberately cognizant of my routines and needs.
I’ve been slipping with making and tracking clear weekly goals for my mini habit trackers, and I don’t always fill out “one thing” or the weather, but I like seeing the monthly tracker as a method to chronicle what vitamins I take and studying the patterns of color on the mood page.
My friend and publishing partner Gayle mentioned last month that she had did a “wheel of life” exercise and in July’s courage-themed wellness planner I found the same exercise.
I was surprised by the results and what they show about me. My highest satisfaction level was in the adventure category. I thought about my travels, my fondness for road trips, my love of new cuisines and testing new restaurants. I love reading books about new topics, learning new skills, and stepping outside my ordinary routine.
My lowest rating fell in the relationships category. That’s where my biggest insecurity lies. I have troubling opening up and even more trouble trusting though I will answer any question you ask me. I’m fiercely loyal and very generous but can also be stubborn, brutal with my honesty and frugal. So with my frequent dips in self worth (probably the result of childhood trauma and life with a disability), I can be distant because I fear being left behind. The people I love and/or trust most are often the ones who are cruelest to me.
Meanwhile, education seems misleading because even though I have two bachelors and a quarter of the work done on a masters degree, I really want a Ph.D. in African Studies. And if I’m honest an MFA in creative writing. I want to learn everything and share what I learn with everyone through my writing.
Romance and family present themselves as areas of struggle. But I’m strong in my spirituality, finances and home environment probably because those are the silos of my life where I feel in control.
Health and Career are mediocre, but I do not strive to have a career.
I value my freedom and living more than my career. I have no desire to make my mark on the universe through my career.
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.
This is (kinda) my first full month with a Silk & Sonder planner. I say “kinda” because it arrived a week into the month.
But I realized today, that even if some of my prompts are empty, and even if I stare at the same exercise day after day, that I am still performing the reflection actively and being present for/in myself.
The new July planner is, according to a tracking email I got this morning, out for delivery today. This is very exciting as I feel like now I can perhaps slowly ease into the upcoming them and actually use the planner as a planner.
I’ve experimented with various ways to log what’s important to me and honestly I still struggle with “what should be where.” I can’t determine what should be on my monthly habit tracker versus my weekly goal tracker.
I have quasi-decided that my monthly habit tracker reinforces habits I have established and the weekly goal tracker helps me tackle specific projects or establishing/renewing habits.
The other “problem” I have is using the weekly health planner— it’s been blank each planner I have received. I don’t meditate, never have and don’t intend to. I haven’t reliably reconnected with flossing. I haven’t lifted a dumbbell in months. Once upon a time I did yoga…
But that also brings up the idea of how many times can you list something as a goal and/or put it on the tracker and not do it at all.
My new Silk & Sonder planning arrived today (no wait, yesterday) after some mishaps with the postal service. To read more about that, Silk & Sonder’s marvelous customer service and my previous experience with the product, allow me to direct you here: Silk & Sonder posts.
I already did the boring stuff— the data transfer of dates already scheduled and associated what not like what Hello Fresh meals we still have coming. Now I will sit with the book for a while and interact with it while blogging my feelings. I received the May journal late in the month and used the time to experiment and test how I wanted to use the book so I feel ready to commit more fully.
So let’s open the book.
1. I find the space “if lost return to” a tad silly and makes me feel five. As in five years old.
2. Table of contents.
3. Editor’s letter. Let’s actually read it this month. Meha, the author of the letter, does a really great job articulating why June is a great month for this theme of “play.” She also has a great thought that addresses my fear of play. “Play can be nurtured in seemingly ordinary ways, but it’s up to us on how willing we are to open ourselves up to new characters, stories, and settings in the midst of our chaotic schedules.”
Play can be nurtured in seemingly ordinary ways, but it’s up to us on how willing we are to open ourselves.
Meha, Silk & Sonder creator
Calendar stuff…
4. May reflections: wins, hiccups, favorite moments, hard moments, changing habits… I feel like I can answer these now and my answers will help frame the month ahead.
And coupled with this… on the same two page spread is space for June intentions.
So let me fill this out and I’ll be pausing there for right now. Until next time…
Greetings my readers — apologies for the lackadaisical level of blogging but in addition to mandatory overtime at the Bizzy Hizzy my life has been a tad repetitive.
I ended a beautiful work week with hitting my QC quota not once but twice, learning that my favorite nurse is leaving to take a job in hospice, introducing my daughter to some of my Stitch Fix colleagues, finding out I have to get the Covid vaccine* and wear a special sticker in the warehouse if I want to work without a mask this summer, and binging on fried food and a Swedish fish milkshake at Sheetz.
Midnight with teenager #1 at Sheetz
The new Swedish Fish milkshake at Sheetz (my favorite junk food spot in the middle of the night — scrumptious jalapeño poppers and Wisconsin-style cheese curds) topped off my night although I was a little “drunk” on sugar when I got home and slept like garbage because of it. But the sweet flavor and the tiny gooey chunks were a lot of fun.
And to make life exciting, my replacement Silk & Sonder June journal arrived. The excellent customer service made right for the difficulties incurred by the postal service. My original June journal has been sitting in the regional post office 8 miles away for two weeks and at one point did arrive in my local post office two miles away only somehow to be rediscovered at the regional post office yesterday. The post office claims it will be delivered today.
If I end up with two I will give one to my friend Gayle who is often my partner in crime. She’s a graphic designer, a college professor and, in my opinion, a professional and talented doodler. So if we use this “self-care” journal together, it could lead to some interesting feedback.
Another random side note, teenager #1 is considering returning to therapy. She has struggled to find a good match as she is a teen but an unusually mature teen with more adult than teen problems. I have reached out to a friend of a friend (we all went to college together) about the prospect of her professionally seeing my daughter and I was suddenly struck by the notion that I am now old enough that my friends have such fully developed skills and careers that we are, well, the grown-ups in the room.
Anyway, back to Silk & Sonder, the June 2021 theme is “play.” I am numb with fear. My mother and estranged husband all insist I don’t know how to play. I had carved away this small block of time before dinner to explore more of my June Silk & Sonder planner…
I transferred the June-related notes from my May planner. The basic layout is the same but I see they do try to change up the mood tracker and some of the pages. I didn’t try last month’s recipe or complete all of the “creativity” exercises.
But I was surprised at how distressed I became when I no longer had it. I’m a little behind on all my hopes for today so as I start working with it more there will be another post. Or many.
* Now, please don’t lambast me for not wanting to get the Covid vaccine. I am very glad there are products available for those who need it or would feel safer with it. But the research on this virus is still happening, the current products on the market are not approved by the FDA and the mRNA vaccines are new technology (using the same techniques developed by crispr to genetically modify mosquitoes so they can’t carry disease and the same technology was used by a Chinese scientist to modify a female baby so she can’t catch HIV) that is not a vaccine at all.
I had an appointment to get the Johnson & Johnson vaccine as that is a more traditional (do they call it viral vector?) product. My appointment was on the same morning the FDA called for the pause, so it was canceled, not by my choice. I don’t understand the fuss about blood clots when plenty of women get blood clots all the time from hormonal birth control pills.
And if that wasn’t enough to make me think twice, the new guidance from the CDC suggests that natural immunity generated by the body after contracting and recovering from Covid, which I had in December 2020, should last for at least a year if not for life.
So I probably don’t need an experimental vaccine product, not yet.
And, I have anecdotal reports from a friend who works in Washington DC as a medical technologist who has attended events at the CDC regarding this virus, that the next round of vaccine products, boosters as it were, may allow those who have not been vaccinated to receive only one shot instead of two.
And, I think finally, I am concerned that since I had Covid, the vaccine may cause a reaction on the first dose and since I had Covid once, I’m not ready to volunteer to repeat any of that experience. In addition, vaccinated people often test positive on Covid tests when they don’t have Covid and this can cause unnecessary quarantine and prevent travel and delay necessarymedical procedures as one friend can attest.
Earlier this week it was 90 degrees and sunny. Yesterday was 60 and cloudy and prone to dramatic cloudbursts of dramatic rain.
Today, the high was around 45.
My knees ache and my ankles keep giving out. I collapsed on the floor at one point, scraped my knee and tore my fancy, super soft and cozy joggers I bought at Stitch Fix’s Bizzy Hizzy employee pop-up store.
So I’m currently in bed with my electric blanket and two three-legged cats.
Louise, one of our fosters
Tomorrow I will finish my May edition of the Silk & Sonder wellness/self-care planner. Even though June starts on Tuesday, apparently Silk & Sonder starts all of its planners on Monday, so Monday May 31 is part of the June planner.
The June planner shipped in mid May, with an anticipated delivery date of May 24. According to the tracking information, it arrived at our regional post office about 10 miles away in the early afternoon on May 18, but didn’t arrive at our local post office 2 miles away until 4 days later on May 22.
It has languished there for a week.
Now, in the great scheme of life, this planner is not vital. But it is rather pricey, and I find a weird emotional sensation in stressing over planning my mental wellness strategies because my calendar is lost in the mail.
Receiving a calendar that suggests you plan for the future with reflection and mindfulness AFTER the month starts defeats some of the purpose.
And if there are problems with the United States Postal Service, shouldn’t the merchant find a new method of delivery? The product is time sensitive.
Honestly, I find it difficult to evaluate if the planner has allowed me to plot a calmer and more mindful future/existence because I’m too busy freaking out that tomorrow is Sunday, that I have to not only work Monday but work day shift, and I can’t even fill out my to do lists, meal plans and other Silk & Sonder pages.
As you may know, I am a daily journaler. What I journal from volume to volume may change, as I have been doing this for 30 years, but I have filled hundreds of notebooks.
Thanks to social media targeted ads, I discovered the Silk & Sonder planner, a self-care tool. Every month they will mail new a new planner with a new theme.
My subscription was due to start in June, but as tomorrow is my birthday I thought it would be fun to request the May book. I ordered it Saturday night. It was scheduled to arrive Friday, May 7. My mandatory overtime at work began May 10, so this would be the perfect way to organize my mental health.
Except it arrived Monday, May 17.
Regardless of this, and what feels like a very hefty price tag for an aesthetically pleasing but, in my opinion, cheaply manufactured spiral bound book (it’s not cheap, but I struggle to find the right words— the paper is not thin, but it’s also not as heavy as I would expect for the price).
For instance, it’s flimsy. You can’t write on your lap. You have to have it on a hard surface. For $20 a month, the cover at least should be a cardboard consistency to ensure it will withstand travel and daily use.
The interior is lovely. Ninety percent contains elements I already do in my journal, financial book, and/or on my phone: sleep tracker, expense tracker, habit tracker, mood tracker, meal planner, to do list, etc.
There is a weather tracker, goal lists, coloring pages, thought/writing prompts, and poetry and inspirational quotes.
My journal should contain what I have done and my Silk & Sonder should foster my goals, I suppose.
I’m definitely going to experiment with May and then decide on a system for June, which the company has already shipped.
Angel Ackerman 