This is another in my ongoing series about life with cerebral palsy, a disability no one I know seems to understand.
I have eaten thousands of extra calories this weekend. I can’t stop myself. My weight has hit an all-new, all-time high and I am deeply ashamed of my behavior.
I wrote my primary care physician an email midday Thursday after I called out sick from work, but before I slept 12+ hours. I told him: I know you don’t have the answers regarding my cerebral palsy and its long term effect. I know I walk funny and that has caused arthritis type issues in my hip, my SI joint specifically. I understand from working with my chiropractor (Nicole Jensen, Back In Line) who used to be a physical therapist that the instability in my lower body, especially as I compensate when I am pain, comes from these complications. But the only thing that helps the pain is the CBD creams I get online— Charlotte’s Web and CBD Medic specifically.
I have 2-6 bad days a month, usually a couple every two weeks, reinforcing the idea that my late 40-something menstrual cycle is compounding issues. I only get cramps in my back, but I’m also experiencing pain at ovulation.
And it’s bad pain. Just like all my other pain. All in my lower back.
My new gynecologist listened to my complaints of long-term anemia (which makes me too weak to properly deal with all these other struggles), heavy bleeding, pain every two weeks and massive blood clots exiting my body, and prescribed a couple ultrasounds.
The results have been in for almost two weeks and I can see them but I don’t understand them but they did find things, even if not large and scary, but internal organs are small.
I told him, I work with a personal trainer three times a week, and except for stress eating, I eat well and take all my vitamins. I even scheduled my upcoming follow-up bloodwork.
So which doctor do I need to talk to because my schedules anemia follow up is Nov. 2, and I would like to know if any of this can be treated and/or how permanent it is and/or will it get worse?
Meanwhile, my blind friend Nan and I visited Park Avenue Market, one of our favorite places. We both order liverwurst from the deli.
The man slicing our meat, who knows us at this point, comments that he doesn’t know how people can eat liverwurst.
I told him I don’t even like it. It is a little nasty, but that this liverwurst is better than off-the-rack liverwurst. That I’m not a big meat eater and I struggle with getting enough iron as I have a history of anemia. With the right cheese, it’s not so bad, especially with lettuce and good bread.
It’s inexpensive— so if I get sick of it I feed it to the dog and the dog loves me.
“So, you’re buying liverwurst for medicinal purposes?” he remarked.
After working out some delivery issues with customer service, I loved this product. But as lives go, mine got busy and I started using my journaling time as workout time and have been unable to find a time where I am rested enough and still enough to benefit from these activities.
Each month more and more of the planner remains blank because I can’t keep up— and that stresses me out.
I think I can incorporate some of the items I really like— monthly mood and habit trackers— into my current journaling practice.
But I would love if Silk & Sonder developed an annual planner that would allow exploration of this topics without feeling like I’m starting the over every month.
And as my life gets busier, making sure my paper planner and my phone calendar match has been exceedingly difficult.
Next, let’s briefly do a Purple Carrot Update. Today I prepped the matcha overnight oats and made the ramen bowl. (Video of matcha prep here.)
The teenager vetoed the homemade miso broth and fresh ramen.
I had the leftover black pepper tofu for dinner and it was soooooooo good, even leftover.
And most Purple Carrot meals take 30 minutes to prepare, which in my kitchen has been translating to 40 minutes. Much better than the cooking marathon caused when a Hello Fresh box comes.
But now to the Bizzy Hizzy. I finally learned the “mailer machine.” It’s a folding machine. We used it to fold the postal service priority mailers that go in each fix.
We had trouble getting the machine to work— so we didn’t really get started until after first break. We folded 4401 mailers.
Basically we unpack the mailers, sort them so they are less likely to jam the machine, and feed/empty the machine. There is a zen to lining up the mailers on the rolling machine, fanning them and making sure they don’t curl.
I was sent to the mailer machine as part of Stitch Fix’s quest to know what tasks I perform best. I perform regularly at 96% in QC but unfortunately when I have bad day that plummets to 85-90%. They raised the pick goal so I only do 75% of that. Apparently I have shown both potential and inconsistency in inbound processing and returns. I apparently tanked in style carding (66%) which I would like to believe was a fluke but maybe not. And a shocking 29% in NAP binning. It was shoes. And it was very painful.
I’m told they want everyone to have two work centers they can perform 100%.
So now I’m at the mailer machine.
If I’m honest with you, and it is very hard for me to say this in public, what I hear is: “You’re not good enough for us, so since you suck at everything, let’s stick you on this machine back in the corner.”
I feel threatened. And like a failure.
And that is not what they said. At all.
But I have a disability that makes me insecure and makes me feel inferior, unworthy. And certain childhood traumas leave me feeling unwanted, and as if I am a burden to everyone.
So I am being honest. For one reason. In case someone else is fighting a similar battle and needs to know he/she/they are not alone.
When I turned up at the Apex Gym today for my first session of the week, I was accompanied by the teenager and her dog. They were both impressed— and in the dog’s case confused— that my trainer Dan was wearing his baby.
I am always impressed with the different bodies I see at the gym and the attention both trainers give to their clients.
There was a woman at the gym finishing her session when I arrived. She was working hard with some dumbbells, with her back to me. She was older than I was, and overweight, probably at least obese by BMI standards (because I am overweight by BMI standards).
But she was uneven, with 80% of her excess weight in her legs.
And just like with me, Dan supported her and challenged her as if we were athletes. You could tell she was proud of herself, and I was proud of her.
And I couldn’t wait to tell my trainer Dan that I can already feel my body moving better. In his eyes, he calls it “a little increased mobility” and to me, I feel like my knees are moving the correct direction.
I told him that I got to pick at the Stitch Fix Bizzy Hizzy and covered about 6,000 steps and pulled 216 items in less than three hours. Now those aren’t stellar numbers, but I haven’t left QC in months. And I didn’t hurt.
If this Apex experience doesn’t teach me to participate in exercise and strength training daily, nothing will.
Today’s workout t-shirt was “let’s hit the bar” by The Fitness Tee Company and my trainer Dan let out an enthusiastic battle cry. We did hit the bar, and we added weight to it. I really enjoy bench press.
In other news, I listened to the latest podcast from the NYT Daily Sunday Read, “The Man who filed 180 disability lawsuits.” It looked at the “industry” of people hired by lawyers to find non-ADA-compliant businesses. And sue them.
I need to digest this more, but the reporter interviewed a small restaurant that almost lost everything because of such a lawsuit, in what seemed a situation where a new restaurant just had everything go wrong.
But the reporter also interviewed the litigant who said businesses have a responsibility to know the law better (my note: it’s almost 300 pages) and that being disabled is expensive so these lawsuits help pay for his equipment and care.
Well, if yesterday made one thing apparent… it’s that sometimes answers lead to bigger questions.
And questions often shake our foundations.
I have had an appointment every day this week before work. In the last ten days or so, I have seen my therapist, my personal trainer, my chiropractor (who has a background in physical therapy) and my primary care doctor and one of his new residents.
My heart was genuinely excited for the visit as I’ve made a lot of positive health habit changes and my primary care physician and I have a great relationship. Normally my care is a discussion and we work together to resolve my issues.
Since Covid, the practice has seemed much less organized and attentive as usual. They also recently took on some family practice medical residents. I waited in the exam room for 75 minutes.
I went into my phone to record my blood pressure on iHealth. And that’s when I noticed— iHealth has been recording my double support time and my walk asymmetry for a year. (This morning I compared my walking and balance statistics with my teenager’s and her walk is more screwed up that mine! My walk is consistent and consistently “off” but hers gets severely skewed every time she gets plantar warts. Turns out my neighbor has more issues in this area than I do, too.)
So, at 12:15 pm — as I am lusting for a glass of water and breakfast, I had nothing yet but a gargle of purple listerine— the resident enters the room and apologizes for the tardiness. I told her I was about to order GrubHub out of fear they forgot me.
I told her everything about me (as she had never met me before) and relayed that the doctor wanted to see me. I also mentioned that muscle relaxers might be a better fit to ease my periodic pain than ibuprofen or acetaminophen because it might be more due to the stress on my joints and the tightness of my muscles as a side effect of the cerebral palsy.
Now, remember, my anemia started more than 12 years ago with work stress, gaining weight and heavy menstrual bleeding. And I came to my current doctor because my former one refused to look into the source of my anemia. And that doctor made me cry. And I had started having panic attacks.
Now I am back in a similar symptom situation but I have better mental health and a way better doctor.
The resident goes and gets my doctor. I propose waiting several months to see if the anemia improves with the mesures I am pursuing now. He is worried about polyps in my colon. We agreed I will use some stool cards for a home test.
I didn’t feel heard about my request to find solutions for my body pain because then we discussed my mental health.
And he wanted me to visit their new staff psychiatrist to rule out any issues (like bipolar 2) that might require a mood stabilizer.
Now I complete understand why his said this: I had mentioned some dramatic temper incidents previous to some of my recent lifestyle changes, I had asked to restart the prescription for a very low dose of lexapro that had been prescribed for high blood pressure to see if it would even out some premenstrual mood swings, and I had mentioned some highs and lows in the past.
But I also said the isolation of the pandemic gave me the space I needed to deal with some heavy duty stress, and that good things were developing for me and I felt like this was one of the great years in my life. I talked about having rid myself of anxiety and being able to look back at that former period of my life with understanding of myself and pride. And that my therapist and I were finally looking at my childhood trauma as I scored 6/7 on the ACE test.
And he knows I have been in therapy for more than a decade. And that my therapist recommended him. Shouldn’t he let my therapist request that type of referral?
So I felt betrayed and it reintroduced feelings of anxiety and insecurity, not being sure if my medical professional was really paying attention to me and what I was saying. I had just mentioned delving into childhood trauma for the first time in my life. I am having other health issues that I need to address. So now, in my opinion, is not the time for questioning my brain chemistry.
So we agreed to discuss my anemia and my psychological state with my gynecologist (whom I see Monday) and my therapist and revisit the issue when I return in three months to discuss the follow up blood work.
This left me shaken and wanting to scream, “Stay in your lane.” I went to the doctor because he asked me to come discuss my anemia— how did a shrink come into play?
I often think this is how people get misdiagnosed, not by bad doctors, but by doctors trying to rule everything out and in the process convincing patients they need different help that they actually need. Like when people see a commercial for medicine and later “ask your doctor if (this expensive drug) is right for you.”
I emailed my therapist from my phone as soon as I got into my car. By 3:30 pm, he said he disagreed with this assessment— that I should be screened by a psychiatrist— but that we would discuss. Honestly, he is the only person I would trust with a decision like that. We all need to build teams we can trust. And this is how I advocate for myself.
When I got home, around 2 p.m., I finally had my morning coffee and made this— what I would call my “summer vegan sandwich,” courtesy of my stress shopping last week and a Hungryroot delivery. (See the teenager unboxing here.) Lightlife bacon tempeh, Hungryroot lemon tahini, romaine, deli pickle on 12-grain bread.
I didn’t take proper care of the animals (loosing almost four hours of my day to a doctor’s appointment that normally takes one hour).
I QCed 123 fixes, which is far better than the 116 the night prior. When my favorite Stitch Fix supervisor said hello, she asked how I was, I said okay. She looked at me askance and said, “only okay?”
She told me if I needed anything or if there was anything she could do to let her know. But she can’t fix the emotions in my head. So I thanked her and went back to some of my standbys— showtunes!
I listened to the soundtrack of Avenue Q as we used to in the makeshift temporary newsroom of Lehigh Valley News Group, and I can still remember one of my favorite young editors with her big headphones on, fighting her stress and her insecurities with a dose of “What do you do with a B.A. in English/It sucks to be me.”
Speaking of the newspaper days, I’ve reached out to some Chronicle colleagues for help with promoting the FURR Pop Up Cat Café August 15. The man who hired me for that newspaper (the boss of my best boss ever) mentioned that my daughter has grown up in the blink of an eye (which he has seen thanks to Facebook).
And that brought back great memories as I think the teenager was the only baby born to a staff member during the run of those newspapers. I realized I was pregnant while planning a political debate sponsored by the newspaper in Phillipsburg, N.J.
So yesterday was hard, and I managed to avoid slipping into those old panic-prone mentalities. I am drained today but luckily only have a four hour shift.
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.
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.