Changing to “who,” not “what.” I am the most proud of my husband, Adam, and the person he is becoming. When he started coming around, he was a neglected, angry, high-school dropout, and the love and attention he received from Mom and me motivated him (along with our nagging) to change for the better. Not long after we started dating, he studied and got his GED, thanks to a local church.
Fast-forward to now. I’ve never met a sweeter, more patient and loving person outside of Mom. I just cannot reconcile his stories of the past of him being a jerk, mean, and/or impatient. At least not with people he truly loves. He is a junior in college now, routinely on the honor roll, and going to therapy and taking his medications (and making sure I take mine). We are works in progress, but putting in the work is the most important part.
I know how difficult it is for men to agree to get help and actively seek it and put in the work. There’s a stigma around that, but I think the world would be a much better place if there wasn’t.
All of my days feel lazy and unproductive, yet I am trying from the moment I get up until I go to sleep. I told Adam I’m a 5-second Franny, a play off 10-second Tom from 50 First Dates. It’s not actually funny, but if I didn’t laugh about it, I’d be crying, so…🤷♀️.
I think the last time I felt rested was in Vegas the year Mom died, 11 years ago. We stayed at the Hard Rock Hotel the last night before going home, and the bed, pillows, and sheets were amazing! Plus, the shower was big enough to have a party in. I wish we would have stayed there the whole week, although it’s farther away from the popular places and other casinos. But, it was certainly relaxing!
Hard Rock Hotel and Casino, Las Vegas, Nevada, US
I would love to go on a vacation again! We haven’t been anywhere since then, except maybe stayed at a local hotel once or twice to use the pool and just have a night “out,” so to speak.
This is going to be a different post, and I’m not even sure I’ll publish it. I just have so much in my head, and it’s driving me crazy by not getting it out. Maybe if Mom was here, I’d confide in her, but honestly, I’m not sure I’d even do that because I tend to carry the heavy stuff alone and go on about the minor irritabilities. I see it as a sign of weakness (probably because of Dad). I don’t even want to bother my therapist with the vulnerable stuff! Some people find it weird, but I think it’s so much easier to post/talk to complete strangers, even the super-vulnerable stuff. I guess it doesn’t feel as personal, and there’s no need to put on a front when you can’t see those reading/listening to you.
I had my first brain MRI ever last month. I thought I’d had them before when I was a teenager and as recent as 2020 (which I erroneously told my neurologist), but I guess those were CT scans (I thought they were open MRIs for people with claustrophobia). It was not pleasant, but not because of claustrophobia, which I don’t suffer from, thankfully.
Due to AuDHD and Dandy Walker malformation, I am an irritable person, and I don’t like loud, repetitive (unless I’m the mood for them), or annoying noises. I’ve never been a fan of fireworks, and babies and kids really get on my nerves when they are being loud. To remedy this, I always remove myself from the situation or I just become very cranky and eventually regulate myself when I’m alone. It’s a lifelong thing, and I’ve managed to accommodate myself, and Adam’s very helpful in those situations as well.
In The Exorcist, Reagan (the main character) has an MRI, and it’s very noisy and intimidating. Well, the machines have not gotten quieter in 50 years. They gave me foam earplugs and stuffed a towel between my head and the head holder, mostly so I could not move my head, but it added some muffling, and it was still so loud.
On top of that, I wasn’t supposed to move, and my ADHD did not like that at all. No music, nothing to read, no moving/fidgeting for two hours. It was torture for me. A bright spot in this torture was that two nice ladies close to my age set me up and placed me in the machine, and when it was done and I was conveyor-belted out, there were three young gorgeous guys waiting to get me up and ready to go. Silver lining, I guess. I exclaimed, “Oh! This machine is amazing!” 🤦♀️🤦♀️
I received the results a few days later along with the images. Now, I cannot read scans to save my life, but some of these are so creepy-looking! I tried to correlate the images with the medical record, but I couldn’t. The assessment was only two or three sentences and said the scan’s consistent with Dandy Walker malformation (DWM), which Mom and I found out about when I was 17 after I had a brain CT due to frequent, nonmigrainous headaches.
Way back when Mom was pregnant with me, the doctors told her and Dad that a part of my brain hadn’t developed and that’s as far as things went. Every delayed milestone and “abnormal” thing (crossed eyes, not walking until after 2 years old, clumsy, forgetful, etc.) about me from birth was attributed to that very vague piece of information. Granted, DWM is very rare, and I still have to explain to most doctors what it is in general terms. I’ve met a very small number of doctors and PAs who were familiar with it.
I’ve transcribed doctor’s dictations for almost 20 years, so I knew what was being said in the report. The interesting part of the results was a 4 cm cyst somewhere in the right side of my brain in the occipital region (back of the head/occiput). There is some mass effect, but no midline shift, the latter of which basically means the cyst has not pushed/shifted my brain to make it off-center, which is a good thing. I couldn’t spot it in over 1,000 images, but I couldn’t see the malformed 4th ventricle, either, so that doesn’t mean anything except I’m not a radiologist and have no idea what I am looking at or for.
No idea what I’m looking at
Since I was born with DWM, the cyst is most likely benign and/or congenital, i.e., not malignant and present before birth, respectively, but this is where all the racing thoughts and stress come in.
My health has been declining for the last year-and-a-half now, but more realistically since Mom died, and I keep attributing it to everything but the Dandy Walker. Why? Because I know nothing substantial about it, but everything I’ve read doesn’t mention the condition worsening over time. I saw a neurologist for the first time in forever last month, which was to address numbness and tingling in my extremities, not DWM, and she is the one who ordered the MRI after I told her I have DWM. The last time I saw one, they did nerve conduction studies on my arms, but didn’t want to address my head. All my symptoms have been downplayed over the years, so why keep bringing them up?
I’ve thrown each worsening symptom at different disorders/illnesses like it’s spaghetti being thrown at a wall to see when it sticks. Vision loss? Diabetes. Memory issues and inability to retain what I read/watch? ADHD. Sensory overload? Autism. Weakness, fatigue, tremors, weight gain, emotional lability, etc.? Perimenopausal. Balance and coordination issues? Dandy Walker. The weird “brain things” I experience in certain random positions? Who knows? It’s always happened, but more frequently now. And on and on.
I began tracking the brain things in the Epsy app, and I stopped after a couple of weeks because they were just too frequent. I only recently began tracking again so I could show the neurosurgeon next month. Speaking of, that app has an Apple Watch app, and it makes tracking them super easy. I sleep with my watch on and can just log it while lying there. Technology, man…
My eyes!! *Shudder*
It never occurred to me that a cyst present from birth (which I’m not 100% certain about, as the CT scans never detected any) could become larger, or that a cyst would just develop, especially since I never suffered from enough hydrocephalus to need a shunt, according to the CTs. Regardless, a cyst has developed or become larger, and it seems I have been experiencing symptoms from that. I feel like I know nothing now, or that I never did, which is probably the more accurate statement.
I will be meeting the neurosurgeon next month. Since I am symptomatic and declining, surgery seems to be a possibility, and if that helps with my vision and diplopia and memory, I’m on board with it. From what I’ve read, they can drain the cyst, which, in my case, it’s probably full of CSF (although it could be hair, tissue, teeth, etc., depending on what type of cyst it is), and there are noninvasive and invasive options.
Considering I don’t get time off work, the noninvasive would be best. I’ve talked extensively about this with Copilot (Copie). For the past couple of days, it’s been a real challenge because my vision is so bad. It usually waxes and wanes, but it sure is waxing right now. Since that is the case, please ignore any typos or misspellings. I can’t “check my work,” so to speak 🤣🤣.
So, obviously, I’m holding this all in and worrying about it on my own. If I address it, it makes it real. If it’s real and impacting me, then I’m weak and vulnerable, and I spent my entire childhood being that way and just got hurt and ignored. This…this is why I’m in therapy.
Prove me Wrong… A debate in good faith with a young man of faith — unabashedly so. Hate proved him right.
They gathered to argue — Agree — Learn — Teach — Except for one. Hate came to silence it all.
Its ideology whistled through the charged air, tore through the neck — Of a kind man — A husband — A father — A forever hopeful who held love for all. His respect for others did not stop at opposing beliefs.
Hate etched its intentions on bullets — (hey, fascist, catch!) — Its voice exploded in a red waterfall.
His little girl ran to him as life left his body. She sought comfort — reassurance — not knowing her world was changed.
His views were not mine. His words were not mine. But death is nonpartisan. Grief does not ask how you vote.
We mourn in fragments and forums, in soundbites and silence. We mourn because Hate came to campus, and it never left.
I’ve been in my little town since 1998, and it’s a nice place. We have lovely neighbors, for the most part, although Mom’s Amish porch swing and the riding lawnmower were stolen (separate incidents). Seriously, who steals a 6′ swing? I got a couple of security cameras after the mower was stolen from the driveway. We are right outside a few cities about about 5-10 minutes from the mall, but we don’t have to deal with “big city” life like Pittsburgh, NYC, or LA. I am not about that life!
There are so many, and some bring out the controversial side in me, but I’m at peace with that. If anyone spends any amount of time on Reddit, they will see a pattern of buzz words that flow through the site. Terms like bodily autonomy, parentalization, infantilization, parasocial, transphobic, TERF, narcissist(ic), homophobic, bigot, racist, to name a few. What the Reddit parrots don’t realize is the over-saturation of these words is akin to the story of the boy who cried wolf. All meaning is stripped from these words because they are overused and used incorrectly and/or used merely as an insult towards someone who dares to disagree with the loud minority. Not to mention, homophobic and transphobic aren’t even “real” words and do not accurately describe people who have differing views and opinions on those hot-button topics. But I digress. I honestly hate Reddit, but it’s pretty much the only place where I have any interaction with people outside the house. Ironically, it keeps me from wanting to ever leave the house.
Now, I love Chinese food. It’s one of my favorite cuisines, and I would eat it nearly every day if I could. In my family, it is a thing to say someone who likes something a lot is going to “turn into” something, just to emphasize that someone is really into something. Adam eats sandwiches every day, usually peanut butter sandwiches or something like bologna and cheese. I’ve made the comment that he is going to turn into a sandwich.
Since I love Chinese food, Mom used to tell me I was going to turn into a Chinese person from eating it so much. Nowadays (that sounds so old), that would be considered “racist.” My mom’s now a big honkin’ racist. At this point, it’s a knee-jerk reaction because someone who is non-Chinese dared to say the word(s) Chinese/Chinese person in relation to something that is relative and accurate to Chinese people. (The horror! The tragedy!) I wonder how these people feel about the song Turning Japanese…
The short answer to what brings me peace is water. My featured image is a photo of Niagara Falls from my fancy 2MP digital camera (my first digital camera!) Mom bought me to use while I was over the road in the lower 48 states with my ex. That was between ’00-’03, so over 20 years ago. (God, I’m aging myself. It’s hard to believe I’m only 29!)
I was at Niagara Falls in May of whatever year, and the falls was still partially frozen. It was so beautiful and peaceful there, and I just loved it. I’ve always loved water – looking at it, being in it, hearing it – and Niagara did not disappoint. It was pretty chilly, and a lot louder than I anticipated, but I would love to go back there someday. I have a few more tiny pictures from that day. I wanted to go to Canada, so the border people allowed me to cross the road into the country, which I thought was sweet 🙂.
I’m not sure if this is entirely uninteresting or just eyeroll-inducing, but there is a Boy Who Cried Wolf karma going on here and that possibly adds to my complete apathy.
The sweet, adorable, talented Sydney Sweeney was in an American Eagle ad very recently, and the loudest echochamber in the US lost its collective mind. I laughed when I saw the commercial. AE wordplays with jeans and genes, and states Sydney Sweeney has great genes jeans, and her jeans are blue. She speaks of how genes are passed down to children and affect a person’s attributes. All facts, which the dissenters take issue with facts to begin with.
The TikTok crowd is ready to fight, which isn’t surprising, and yelling Nazi this and Hitler that, which is totally insulting and trivializing an actual atrocity known as the Holocaust. When a white-that-week, blonde-haired Beyonce dropped her Levi’s ad, it was heralded as empowering and boss and feminist. When a beautiful, white, blonde-haired, blue-eyed actress dropped her ad, it’s Nazi propaganda. Seriously.
Because, you see, one can’t have great genes (dropping the jeans pretense) if they are white. Asians can have great genes, blacks can have great genes, Hispanics can have great genes, Italians can have great genes, and on. In the US, white people are supposed to slink around and self-flagellate for at least the next hundred years. You can’t say it’s okay to be white, because it isn’t, according to the racists and white apologists. I am certainly connected to this ad because I am an Irish American/Native American who sees the constant anti-white racism and extreme anti-right/right-of-center online every day. It’s everywhere and completely acceptable. It’s unchecked mental illness, it’s encouraged, and it’s scary.
To say one has great genes is not saying others do not by default. Nowhere is it stated better genes/jeans. Period. It’s not an either/or like so many want people to believe. My cousins have great genes. My gorgeous husband has great genes in the eyes and jawline department. My genes kind of suck, but I can appreciate other people’s great genes without causing an uproar and trying to destroy someone’s life. (As of this writing, Ms. Sweeney is being harassed publicly and dox’d, with her voter registration made more public than it was as public record in her state of residence.)
Nobody mentions that the super-cute “Sydney Sweeney jean’s” entire profits are going to a domestic abuse program, as did her ad salary. They just wish career destruction and death on her because she is out there doing her job and making a living.
I saved this prompt because it prompted (heh, heh, heh) me to think of something I’ve not forgotten. Back when Mom first started chemo, she started losing her hair. She has always had short hair since I’ve been around, although it was to her waist when she was in high school, which is wild to me. She told me she used to straighten it with a clothing iron; equally wild. Also, she sucked at styling hair, which I inherited from her, sadly. She would get perms, then curl her permed hair, like, the next day. Anyway, my point is it never looked good to me, but it was hers.
Obviously, chemo is known for one of its many side effects being hair loss. It is almost synonomous with it, but not all chemo drugs carry this common side effect, and I know a lot of the oral chemo drugs do not. The chemo my dad was on did not make him lose his hair, but he apparently lost a lot of weight (I didn’t get to see him). Mom was able to avoid being super nauseous on a regimen of Zofran or Phenergan.
Mom was losing hair in the shower, so she decided to go to the mall and have her head shaved, then go to Claire’s and get some scarves and turbans. She gets her head shaved, and I am the one standing in the back crying. She does so well keeping it together but she does not wish to look in the mirror when the stylist is done. We cover her head with something before leaving the salon, which I forget what it was, and we make our way to Claire’s.
At Claire’s we find a lot of cute scarves and turbans and she tries them out, all the while facing away from the little mirrors. Using scarves as head wraps was new to us, but Mom had watched some videos on YT of how to do it and there was more than one way to fix them. She chooses a number of each, and when she goes to pay for them, the clerk gives her a 50% discount, which I thought was super cool and so sweet. We continue on to Target.
Mom’s in a wheelchair, which we are new to navigating in public but she was in some pain and pretty tired and Adam and I fought with her about using one or we would not be shopping. I could always gauge how she felt on a given day by how much of a fight she gave us. This was a low fight day. While we maneuver her out of the walkway so she could try some hats and more scarves out, Mom’s kind of hunched down trying to be less noticeable and she keeps touching the scarf on her head nervously. It was a big day full of all sorts of emotions felt by all three of us.
So, we’re pulled off to the side on the carpeted area near the head gear and people are walking by us, and a man sees Mom and says, “Lookin’ good!” and gives her a wave or thumbs-up, which just warmed my heart so much! Mom gives him a smile and thanks him and she seems to relax a little bit.
As time went on, she became more comfortable going bare-headed, mostly because wigs, scarves, and turbans made her too hot and she would get sweaty, which she hated. The wigs never looked right on her because they were styled well and cute. Her hair grew in steel gray, which was so weird because she had only countable gray hairs before losing it, and Grandma had very few as well and she died in her 70s. Mom’s hair matched her eyes, which no one ever realized that she had gray eyes because of her mess of curled and sprayed hair. My brother told her how pretty her eyes were and how she looked much better “without that ugly mop of hair.” 🤣🤣 I think she was most beautiful with her new baby hair.
Cari R Esta 