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 one brings to mind memories of my mother’s flower gardens during my childhood— her lovingly tending her petunias, impatiens, zinniasand marigolds. I begged for straw flowers, snap dragons and “blue angels.” I thought of my mother’s gifted green thumb while frolicking in these fields.
Last week, knowing my teenager had left me home with no car, my sweet friend Joan had invited me to a pick-your-own-bouquet workshop at Terra Fauna Farm. Joan is a member of their CSA.
For those who don’t know, like the teenager, let me explain the concept of CSA or “Community Supported Agriculture.”
First, some history. Our area (the Lehigh Valley/Slate Belt of Pennsylvania) is traditionally primarily rural, with a few small cities scattered here and there and one of the largest cities in Pennsylvania on the one side (Allentown) and the Poconos on the other. New Jersey lies to the east and more rural areas to the West.
I once served as an advisory board member for the Penn State University Cooperative Extension. I completed six years, many of those as Secretary. I never realized how passionate I was about the area’s agricultural heritage until I had this opportunity. I took it for granted.
I grew up in the rural Slate Belt in the 1980s where most of my neighbors were dairy farmers. One literal neighbor had a green house business. And our school bus route cut through a pig farm. Pig farms smell bad, by the way.
Corn fields. Horses. 4-H. Farm Shows. Future Farmers of America. Horticulture and Agriculture as high school science electives. I took horticulture one and it was an amazing exposure to organic gardening (in 1990 before it became trendy), flower arrangement, and gardening. You haven’t lived until you’ve washed a greenhouse of poinsettias with lye soap to kill the white flies.
At that time your parents were either farmers or blue collar workers. My dad was a diesel mechanic.
During the last two decades, farm land has given way to suburban developments and warehousing.
And to compete with large commercial farm and maintain some smaller farms as viable, farmers have embraced the CSA model.
In a CSA arrangement, when selecting his crops and ordering his seeds, the farmer also contacts those who have expressed interest in supporting the farm. These supporters then purchase a share of the season’s crops by sending money in advance. There’s usually a “full share” customarily enough for a family of four and a “half share” for those who don’t have a family or are timid about how much produce they can use.
The farm typically shares what crops they want to plant and the supporter can usually cater their share to their likes and dislikes.
The farmer uses that money to buy his supplies and pay his bills until the crop is ready. And has a guaranteed market for some of his crop.
Terra Fauna (located in Northampton, Pa.) planted a flower and herb garden on what I believe they said used to be their cow pasture. For $5, you can pick a bouquet.
As I mentioned, they had planned a workshop for last week but the heat and the threat of thunderstorms made them postpone until July 5.
Joan took photos and the teenager and I indulged our witchy senses and gathered blooms and herbs from the rows.
We spent $26.50 on extras— a farm fresh cucumber, two zucchini, a quart of new potatoes, a pound of local honey harvested this past Saturday, some garden herb cheese spread and a coffee flavored yogurt smoothie which I think tasted like a milkshake.
The teenager came home and spread her cheese spread on some crisp fresh cucumber and for the sandwich effect added “chicken in a biskit” crackers I bought over the weekend. The juxtaposition of ultra-processed and farm fresh was not lost on her.
Perhaps before the end of the summer, Joan and I can “do lunch” at the farm on one of her weekly CSA pick up days. Which, as a country girl, let me tell you this one truth:
The only way to eat sweet corn is fresh off the farm. If you’re buying sweet corn at a local big box grocery store, I’m sad for you.
These books are directly related to my quest to researchcerebral palsy, a disability I have, and chronicle my journey to whole health. With discipline, hopefully I will lose weight, return to strength training and someday pursue my longstanding goals of running a 5K and hobbying as a body builder.
Below please find my original interactions from the first memoir, Karen, by Marie Killilea: Starting the Karen Books.
As I said then, I thought this memoir would be about Karen. And her struggles with cerebral palsy. A condition no one knew anything about at the time.
Now this is not a complaint, but the book is about advocating for a child with cerebral palsy and Marie Killilea’s struggles as a mother— a mother with a history of pregnancy loss, devout Catholicism, children both precocious and sickly.
Karen is merely a two dimensional figure in the background. And the book chronicles many of Karen’s tribulations (limiting fluids to 20 ounces a day to prevent seizures and reduce spasticity, sores and discomfort from what would now be seen as barbaric full-body braces, and despite her keen intellect being banned from school) as well as her developmental triumphs.
The book ends with one such celebratory moment.
In the passage photographed above, Karen tries to navigate a hill. Mrs. Killilea never quiet explains where she was going— to the house? Away from it? Karen throws her crutches down the hill, rolls, retrieves her crutches, falls several times trying to get up, while her family watches and records it on a neighbor’s home movie camera.
This is one of those moments touted as bastions of independence. But how many times do you want someone fall without at least asking if they want help? And this is solely my opinion and my experience, but I hate seeing myself on video. The camera makes the “wrongness” of the cerebral palsy body more exaggerated and severe. Her parents want to record this moment in their Pride, but, to me, and again this is my opinion, to rewatch such a moment is to buy tickets to the freak show.
This family had inordinate health struggles with all of there children and the work Mrs. Killilea did to benefit cerebral palsy research made the world grow exponentially. And I am grateful.
But as I study the first chapter of Mrs. Killilea’s sequel memoir, With Love From Karen, it leaves me feeling that Karen’s condition has led to a 1952-best-selling book that has eased her family’s burdens, allowing them to buy a big, broken down Victorian house and given them a life line after a decade of medical bills for all their children.
I feel like Karen is exploited. Especially upon hearing that the whole family appeared in Time magazine.
Also I note Mrs. Killilea’s writing style has improved. The sentences flow with more artsy grammar and word choice. The description is more detailed. The verb choice strong.
Does she have an editor working for her now?
Bean, the 50-plus pound mastiff mutt puppy, and I are in the hammock. I hope this book presents Karen as a person, not an accessory.
Today I have a paid holiday from the Stitch Fix Bizzy Hizzy and I’ve tried all weekend to eat more fruits, vegetables and iron rich foods. My lingering fatigue is an anemic battle only won through supplements and self care.
Nan, my blind poet friend, and I do writing stuff every other week. I spoil Nan with chai and often lunch. Since we went grocery shopping together Saturday, we got a lot of “fun” things to combine into a strange picnic. (See more here: Happy 4th.)
I roasted some carrot sticks in the oven with olive oil, harissa spice and ras-el-handout. I also made carrot chips with smoked paprika. That would serve as french fries.
I made sandwiches on pretzel rolls of brown mustard, sharp cheddar, liverwurst and green butter leaf lettuce.
The other sides were dill pickle potato chips, pickled Brussel sprouts, sliced pepper turkey with cranberry horseradish, and maple bacon potato salad. All tasty.
I put the leftover chai in a mason jar with Italian Sweet Cream non-dairy creamer amd a shot of sweet tea vodka, a shot of honey whiskey and a shot of Irish cream.
We both submitted Covid-related works to Blood Pudding.
Nan had a great time with me searching the internet for info on rocket launches, meeting the new kittens, petting our personal cat Fog and giving him treats. He took them out of her hand with his paw, which cracked her up.
That got the dog’s attention so Nan found herself alternating treats between the two.
After I took Nan home, I buffed the scratches out of my car.
This had to have happened yesterday because look at how the fender has already popped into place more.
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.
This will be another long day-in-the-life style blogs. I never seem to know what will resonate with people so have it all, right? I’ll bold key words to allow easy skimming.
Cat Stuff
Misty
FURR Louise
FURR Louise
FURR Louise & Khloe
FURR Louise & Khloe
FURR Louise & Khloe
FURR Khloe
FURR Khloe
New Kittens: Em & Shady
Adult FURR (Feline Urban Rescue and Rehab) fosters Louise & Khloe are still competing for my attention and unsure if they like each other. Two very different cats with very different personalities. Both really cuddly and are going to be great additions to any household.
Parker and Extra Crunchy of the ten little kittens that got sick with distemper are now neutered and ready for adoption. They are such loves, especially fond of human snuggles as they were syringe fed.
And of course Touch of Grey (another adult foster) still thinks she’s the boss. She definitely is more cat than dog and we have good reason to believe she has neurological issues which may contribute to her agressive mood swings but the teenager is working with her.
My original Saturday morning plan was to prepare an outline of the coffee and kittens fundraiser, but our cat foster godmother had two kittens for us. One black kitten from a very feral litter, but he was not hissy spitty and one who turned up with a litter of small kittens who obviously was older than them and had been on his own. That one looked a little like Crunchy but was feisty.
I nicknamed them Fuzznuts and Fluffballs in my head, not knowing their gender. I also considered our “cats are gods” theme, but these two were not a litter so we didn’t want to use a whole pantheon for them. I considered Elohim and Yahweh, but my daughter vetoed it. I worried someone might get offended.
But foster godmother said, “people always get offended.”
A DMX song came on the radio in the car on the way home. DMX passed away recently and rappers also have that badass cat attitude. We knew the black kitten was a girl and the grey a boy.
“What about DMX and Diam’s?” I suggest.
“Mom, no one knows who Diam’s is,” she replied.
Latifah? Salt and Pepa? Then it him me.
“Eminem and Slim Shady,” I said.
“Mom, they’re the same person.”
“It doesn’t matter. The black one can be Shady and the other can be Em.”
So now we literally have a cage of two kittens, Em(inem) and (Slim) Shady in our living room.
Grocery Shopping
The teenager went to work at Tic Toc Family Restaurant at three, and I went for Nan, my blind friend. We had plans to visit Park Avenue Market for deli salads and meats and the Lidl for boring things like milk, cheese and half and half.
I casually walk through the store explaining every item I see, from snack items to spices to peanut butter in squeeze tubes and olives in plastic snack cups. I love food and I love weird so this is why Nan and I consider grocery shopping fun.
At Park Avenue, Nan indulged in some meatloaf and ham. I got the pickled Brussel sprouts, liver wurst, bacon maple potato salad, cranberry horseradish, and violet candy. And crab stuffed flounder we had for dinner tonight.
These will resurface tomorrow when Nan and I work and have lunch together.
At Lidl, Nan got yogurt, lemonade, milk, Mac and cheese and those amazing home baked cookies. I got produce, cheese, breads, chips, seltzer, butter and Brussel sprouts among others.
And when I brought Nan home I discovered someone hit and run my car. This happened in July 2019, too. But that was a full side swipe. At work. In a church parking lot.
Someone hit my car. Sigh.
Nails and fun with Beth
I came home and put the groceries away and got ready to leave for my friend Beth’s house, formerly Nails by Bethy at Hyperion Salon. She recently started a new career in commercial insurance (I think) and so won’t have time or stamina to maintain my fingers and toes.
But tonight I was headed to her house for “cocktails, dinner and board games.” She agreed to have my pineapple coconut rum drink ready when I arrived. I met some of her friends. Beth made chicken poblano with black beans, rice, coleslaw and pickles. And as I mentioned yesterday, we all played Cards Against Humanity when my family arrived. Her father brought the teenager over so she could be my designated driver.
Brunch with Mom
My mom and I have a tumultuous relationship probably due to trauma we’ve experienced in our lives. My mom has not had an easy life. Let’s face it, most typical folks don’t.
We had a talk last weekend and I agreed to visit her today. She offered to take me out to a swanky breakfast and let us stay for the parade for IndependenceDay that would be passing by her house. I don’t really like parades, and I’m sick of eating out.
So I requested a grilled cheese on rye instead.
She obliged.
It was delicious.
The teenager brought the Bean dog to visit Mimi and Mimi’s dog, Dog, was a gracious host. Dog is a miniature poodle.
Once we arrived home, I read a little more Karen by Marie Killilea before I opted to take a nap. I then stripped my bed, worked on the fundraising outline and went for a walk with Buddy and Sarah.
I stumbled on the sidewalk, but did not fall. Knowing I had borderline anemia made me feel better that my cerebral palsy wasn’t running amok.
For dinner, in my continued effort to eat more vitamin rich food to combat anemia, I made the crab-stuffed flounder, brown rice with pistachios, and sautéed some leftover green beans and the cabbage, kale and carrots in a Green Goddess Salad I bought on clearance at Lidl yesterday. I topped it with some rather stale sesame sticks purchased at Forks Mediterranean Deli at our last visit (which was too long ago).
My goal for the rest of the night is to work on the Wheel of Life in my July Silk & Sonder planner and finish Karen.
Happy Independence Day.
Remember that the founding of this country can be seen from many perspectives: as destroying the lives and cultures of indigenous populations, as a place to promote white Christian values, and/or as a place where people came to live according to what they felt was right.
The last 48 hours since the teenager arrived home from Cape May have been a blur. The fosters Khloe and Louise from Feline Urban Rescue and Rehabilitation are very glad to have the dog out of my room so they can compete for my attention freely.
The teenager brought me some breakfast coffee from Cape May Roasters. I normally don’t like breakfast blends as they are typically light or medium roasts and I like my brews dark. Maybe it’s just because the teenager bought it for me or maybe it’s just good coffee, but I really like it!
Author’s note: I started this blog entry in the wee hours of Saturday July 3 after my Friday July 2 shift, after having three days off for teenager’s beach vacation. Someone had to watch the menagerie.
I have tried several times over the last 24 hours to finish this entry, but it is now 23:55 (or 12:55 p.m.) with cool air filling my room and idiot neighbors having fun with firecrackers.
And I’m no closer to posting.
But back to the Cape May souvenirs, which for me include a mini retro Pac-Man Arcade Game!
So we spent Thursday evening catching up and I almost finished Karen by Marie Killilea. Marie Killilea raised a daughter with cerebral palsy, took in a neighborhood teen, raised another daughter who had repeated bouts with illness including rheumatic fever, and later had a mischievous son.
I would say I’m 50 pages from the end of the book. It is Marie’s memoir about her work to champion cerebral palsy, promoting knowledge and encouraging research, while raising her sickly children. These children never seem more than cardboard cutouts.
On Friday, I returned to work at the Stitch Fix Bizzy Hizzy. I didn’t get to Style Card. I QC’d something like 36 fixes the first two hours, but by the half way point of my shift only hit 63. And continued to decline with only 123 for the night. The goal is to quality control check, fold and box 130 fixes per 8-hour shift.
Meanwhile, the cat group is discussing giving us new kittens and developing a new kitten-cuddling and coffee fundraiser that my daughter, my former employer from ProJeCt and myself are brainstorming.
So I guess I’ll have to revisit this tomorrow and introduce you to our new kittens and tell you about my evening with my friend and former nail tech Beth at her home with her friend Barb and eventually the teenager and my estranged husband. We played Cards against Humanity and I drank four very stiff pineapple juice and rum drinks.
Yesterday I had hoped to do more editing on the bits and pieces left of the near-final manuscript of Manipulations, the first of three novels by me, coming soon from my little publishing imprint, Parisian Phoenix.
But then my graphic designer partner in crime (and this endeavor) encouraged me to start Karen by Marie Killilea. The book was in its 11th printing by the mid-sixties and I am reading a copy from about 60 years ago.
It’s part of my recent quest to understand my cerebral palsy, which ironically led to me discovering that my anemia has reared its ugly head. So maybe this quest isn’t addressing physical needs as much as emotional ones. And the neurologist’s office did return my call. My appointment is January 13. Yes, in six-and-a-half months.
While I certainly understand what these parents must have gone through (Karen was born in 1940 and died in 2020), this certainly was a different era. An era of institutions, a lack of knowledge and families and doctors sitting around smoking cigarettes together.
But so far, and I believe Karen is now 4, Karen is described as beautiful, but presented as a thing in the background. The memoir so far is about the mother and her thoughts and parenting techniques and her interactions with the medical community.
To me, the way Marie describes placing her in the backyard and going in the house to do chores… well, Karen slowly pulls herself by her arms inching toward whatever is of interest. The current chapter describes her playing in a mud puddle. She sounds like a fish caught between land and sea.
Honestly, to me it sounds cruel. I’m sure it fostered independence and strength but damn it sounds grueling for Karen. This is the beginning of the ideology of mainstreaming kids with disabilities— toss them in and let them adjust. And as young people with disabilities, emotions and intellect are still immature. So it is cruel in my opinion to let these children struggle with the physical, too. It’s this weird we get that we are different but we don’t have the life experience to understand why or how and while allowing a child to figure it out raises a fighter and someone not prone to accept help or pity, it would be nice to have some framework other than you can or cannot do something or are or are not like everyone else.
I see a potential multitude of nonfiction book projects in my future. My memoir will need to be three volumes: my childhood, my “squiggly” career (yes there is a term for people with eclectic careers like mine), and this health quest.
Speaking of non-fiction, I would like to publish my honors thesis from Lafayette College and do an anthology where I have select authors/artists to explore what I will refer to as identity politics. I have mentioned it to Nan, my blind friend, and Bill, my horror-loving freak friend, and both love the idea. I encourage you to read Bill’s novels, The Kink Noir series, which blend a dark 1940s detective vibe with kink and erotica while exploring some topics about what it means to be human.
My review of Bill’s most recent book is here: Debauchery
Speaking of Bill, my flower workshop got postponed last night, so Bill, fresh off of jury duty, came down to catch up and have dinner at the always charming Porter’s Pub in Easton, Pa.
Rib eye with Jameson’s Demi-Glace
Armed with the news that my iron is low, he bought me a steak and a lemony-smooth gin martini.
Upon arriving home, I finished taking out the garbage and recycling including two more 13-gallon trash bags from teenager two’s room. It looks like she’s officially ghosted me, and that makes me sad.
And I let the dog sleep with me. And as my room is the front room, she heard every noise in the neighborhood.
This piece will also include discussion of the mental health app Ginger and a review of a probiotic carbonated beverage.
If you’re new here… I am a 46-year-old single mom who volunteers with a local cat rescue, has a bratty Goffin cockatoo, and is currently trying to learn more about my own cerebral palsy.
The Teenager is on Day 2 with her grandmother in Cape May, a trip the teen has been planning since she starting working as a waitress this winter. I am home alone with her dog, our four cats, my birds and five fosters.
Yesterday after weeding, Extra Crunchy thought my sweaty, outdoorsy smelling body was a wild animal. (He is available for adoption; he’s a miracle kitten who survived distemper. And has the most soulful deep grey eyes.) Video: Extra Crunchy Attacks My Dress
Meanwhile the dog ate the case to my air pods while I was listening to Alex Hooper’s podcast Achilles’ Heel and making vegetable stock.
I had my second Ginger session yesterday with my coach. I still had the feeling many of her answers were stock, and that sometimes she may have been balancing more than one client at a time. We ended up talking a lot about how because of a dip in self-worth can cause discipline related and motivation issues— why should I take care of myself and commit to good habits if I’ll still be the same insecure person no one seems to value?
But I did do triceps and shoulders yesterday despite intense heat here.
An old friend popped by for a text last night and the nostalgia made me cry. Perspective is a beautiful thing, and sometimes we all need to remember behavior viewed as “bitter” can come from hurt or anger. Understanding can make a huge difference in an interaction.
By 10 pm, I couldn’t end the circle of thoughts about regret, hurt and the pain of seeing someone you once cared about experience something you know isn’t good for them.
So I texted an evening Ginger coach. At first the answers seemed stock and that she was copying/pasting and distracted by other clients, but that rapidly changed. And she and I had a good discussion. It was only about 20 minutes but it ended the loop of thoughts in my head.
I definitely think this service will help keep me focused with my therapist and allow me to get help for the more everyday issues as a situation is happening. Being the curious type I am, I want to know more about how the system works for the employees.
Of course, with the teen being gone, the dog is sullen and bereft. Last night she kept checking if the teen had come home yet and it was very difficult to get her to go to bed in her crate in the teen’s bedroom without the teen.
At 5:40 am the poor dog starting crying, so I went to her, got her out and took her to the yard and just let her stay free in the house. There was no way I was getting up with only 5 hours sleep.
I woke to find her in my bed with me and I actually liked knowing where she was. We got up for the day at 9.
As I drank my cup of coffee and starting feeding animals, my primary care physician’s office called. They are concerned about my iron and the doctor wants to schedule an appointment to discuss me going for a GI work up.
Now about a decade ago when I switched to his care, I did so because my doctor at the time to refused to treat my anemia. I had stress-induced super heavy menstrual bleeding that had reduced my stored ferritin to a 4. The nurse in the office at that particular doctor said that the adrenaline in my system from the stress is the only reason I was walking around and not in the hospital.
I had a three-month wait to see this particular new doctor. By the middle of the summer I literally could not get off the floor unless my-then five-year-old made me a pot of coffee and brought me a cup.
I called my OB/GYN and begged his staff to help me. The nurse practitioner saw me a day or two later and I left his office with a bag full of prescription-strength, special absorbing vitamin D and directions to take an iron pill with every meal.
So after two years of stress, and my period is still heavy, and eating mostly junk food for the last year, I don’t think we need a complete GI work up to fix this. When I see the doctor, and his residents, I’m going to ask if we can see if diet and supplements will return my numbers to better levels based on whatever deadline he prefers.
But it has me suddenly thinking— the recent falls, issues with hitting my numbers inconsistently at work (I literally said to a supervisor “somedays I just can’t make my limbs move faster.”) I have been blaming being out-of-shape and lazy and my disability for some recent issues, but compounding that is anemia.
And I honestly can’t remember the last time my iron was checked. The only reason he checked it now was because I reminded him of my history of anemia and that if my vitamin D was low, the two go hand-in-hand. And the highest my vitamin D has been in the last decade was 37. 30 is the lowest vitamin D result that counts as normal.
(By perusing my online medical regards I learned I don’t nor have I had HPV, HIV or Chlamydia.)
And this was all before coffee.
After coffee, I put on my favorite sun dress and ventured into the 90 degree heat (at 10:30 a.m. — that’s insane.) I walked over to Nan’s apartment six blocks away to bring her the Seeing Stars super soft lounge set/pajamas I bought her at the Stitch Fix Bizzy Hizzy. Giving a blind woman things with nice textures is always fun.
I walked home, sat for a minute and left at 11:15 to walk to CVS to pick up the teenager’s prescription toothpaste before they restocked it. I treated myself to a Booch Pop withmy 40% off coupon. It’s a carbonated probiotic drink of only 40 calories that tasted like a zesty ginger beer.
There was also a coupon for free candy so I got a generic assortment of Gold Emblem Swedish fish and a trail mix with pistachios and almonds on sale for $2.99.
I stopped at our public library. Our library opened in 1962 so in our archive “stacks” as they are called we have the original hardcovers of the “Karen” books which were bestsellers in the mid-sixties. The adult librarian asked me if I would prefer she find a newer edition and I said no. The originals add to the experience.
I came home with 5,000 steps done from errands and made Bean and I breakfast of chicken, eggs and rice. I put some of my fresh vegetable stock on my rice.
This is the second in what will probably be a babbling series of updates about the interactions of many areas of my life.
My new quest is to understand more about my disability— cerebral palsy— since my generation and certainly those before learned not to question these things. In the early to mid-twentieth century those who couldn’t pass as normal able-bodied people were institutionalized and parents of such children told to forget they ever existed.
I did receive a referral from my doctor to call the neurology office and explore this and I suppose I should put down the blog post and call before I forget. I wasn’t told to call a certain person so I am left with questions.
Does anyone in the office know CP? Like really know it?
Will this be a nice consultation or a medical appointment where I become an experiment?
Will I have the nerve to ask these two questions?
I did take the time to call, and I put on my “journalist voice” as my daughter calls it. I explain that I am a 46-year-old woman with Cerebral Palsy and while my medical team has done a wonderful job treating my body and helping me understand my physical defects, no one has ever explained the brain-body connection or what kind of CP I have.
And I emphasize that I want to understand so that I can age as gracefully as I am able, since some issues might reside in my brain and physical therapy won’t fix that.
A very nice person put me on hold. Time passed and with each minute I filled with fear. What if they don’t have someone? I chastise myself for the thought. It’s a neurology department at a major regional hospital network— someone should have some experience with CP.
But somehow, it doesn’t settle the fear. I think that’s another disability-related trait. Because some of us were taught to “pass” as able-bodied we don’t want to break the illusion and we certainly don’t want to bother anyone when obviously these medical professionals have real sick and injured patients who need them.
So while I was on the phone debating whether or not they just didn’t know how to help me or whether they just didn’t want to be bothered with the pesky person who had questions, I unloaded the dishwasher. And reloaded. And made iced tea. Because it took ten minutes.
And then all of a sudden a person from the hospital central scheduling answered the phone. Turns out I had been lost in the phone system.
After a charming conversation with the scheduler, and bidding her adieu hoping I have no major tests in my future that require her services, I called the neurology office back.
I introduce myself again and say there must have be an issue on either my end or their’s as I ended up transferred to central scheduling. I repeated my cute little tale and the person answering the phone— it was either Megan or Lisa (the other was the lovely person from central scheduling)— said she’d send a message to the physician and when he found the right person they would call me back.
If I could back up for a moment, today the teenager left for her Cape May vacation with her grandmother, her father’s mother. They took my car and I am so excited for them. The teen has worked so hard to pay for this trip for her grandmother. She took my car so I’ll be home alone until Thursday night, caring for the menagerie and getting caught up on housework and hopefully putting the near final touches on my debut novel.
That’s a lot for three days. Tonight I plan on doing my yard work and tomorrow I need to gather some more of the teen’s birthday bomb as it is garbage night. I will also continue taking garbage from teenager two’s former room as she no longer reads my messages and left a room full of garbage, dirty dishes and about 30 empty cat food cans and a dirty cat box with cat waste also on the floor. I think I found all the partially consumed (human) food, and I also found some broken dishes and destroyed linens.
She did thank me for everything I did, but I’d still feel better if I didn’t have to clean up her filth.
Many more of these to come.
There’s a heat wave browbeating everyone so I’m filling a lot of water bowls and passing out ice cubes. These new Feline Urban Rescue and Rehab tumblers make it easy to stay hydrated.
Yesterday before work I went for my follow up blood work. I always get blood work done before my annual physical. This year’s January blood work showed low vitamin D.
He asked me to start taking vitamin D, which isn’t unusual. Most people don’t get enough. He asked for a follow up in six months, and, because of my history of anemia (which was very severe when the teen was in kindergarten) I suggested he check my iron. My vitamin D has increased by 10, but I’m seeing that both D and iron are low/normal. We’ll see what he has to say about that.
And some fun stuff related to my previous blog post… I know it was long and rambling but I want people to experience the string of connections as I feel them. My stress regarding being on hold with the neurologist may resonate with someone. And two of my friends did point out some connected resources. I do love resources.
First, a good friend mentioned she used to read and reread the memoir/biography Karen by Marie Killilea (and there’s a sequel From Karen with Love) about a mother’s journey mid century with her daughter’s CP, when mom was told to institutionalize the child.
Another friend mentioned the podcast Achilles’ Heel hosted by a close relative. Alex Hooper on the podcast interviews guests on a wide range of topics from empaths to panic attacks encouraging listeners to tackle head on their own Achilles’ Heel. I listened to enough last night to know this will be fun.
I also had another Ginger coaching session, but that’s going to have to wait as my typing fingers are tired.
Angel Ackerman 