As a writer it’s a special kind of disabling to not have the right words to communicate how profoundly impairing it is to have an anxiety disorder.
Not being able to explain myself is a very real fear of mine. Mostly because of medical trauma thrust on me by lazy-ass doctors who wouldn’t listen and made me feel like I wasn’t being clear.
The PT at outpatient today knew anxiety, though, and she explained things that I thought I’d conveyed a hundred times before to Dan.
But somehow when a medical pro is explaining what’s going on he believes it. I don’t think he does it on purpose—if I did this relationship would have ended long ago because I have no tolerance for wilful mistreatment—but Jesus H. Christ on a Bike! Being doubted about my own experience makes me feel like shit.
Like when you’re a woman in a meeting and someone with a nutsack repeats what you just said but suddenly everyone at the table understands because it came from someone with a nutsack.
I’VE SAID WHAT THE PT JUST SAID HALF A DOZEN TIMES IN THE PAST COUPLE OF MONTHS, AND I GOT NOTHING FROM YOU, I thought.
Doubt about my experiential observation of symptoms is why it took me two and a half years to get a diagnosis. It’s kind of a big deal.
But I’m too tired to rehash all that right now.
Bottom line is this: Dan told the PT he thinks I’d benefit from restoration of confidence. It’s true in many ways. But also? I don’t know that I’m not the problem here, and that has nothing to do with my weak hip flexors.
Believe me, jerkface. Understand that my confidence wouldn’t be shaken if I weren’t doubted all the motherfucking time.
My PT seems great. I am not frustrated with her at all. I think she will really help me. I just need to vent because this gaslighting stuff makes me feel like they’ve been voting on a new pope in my ears for 11 years.
I want good things to stay. Why does that feel like it’s too much to ask?
I got a letter in the mail saying that my primary doctor is leaving and they’ve assigned me a new doctor a couple of towns over.
I’m not just sad. I’m heartbroken. Again. I want to sob into a package of Oreos. This is not helping my abandonment issues or anxiety at all. Why can’t I have a doctor who helps me?
Why?
Dr. J has done so much for me, including switching me to Lexapro, hearing me loud and clear when I said no mammograms, encouraging me to try PT, scraping me up off the parking lot, and telling me at every visit to do something fun every day.
As opposed to the absolute cunt before her that berated me in writing for not making appointments and getting the labs she wanted.
My oncologist is fine. A good doctor and a stable fixture, but it’s complicated because his existence reminds me I have cancer. He can’t make the brain tumor go away. He probably looks at me and sees a time bomb.
Even though I don’t see that in the mirror, lots of people reflect that pain onto me. It’s excruciating.
There’s an episode of Glee I carry around in my head where Jane Lynch’s character, Sue Sylvester, is confronted about treating a cheerleader with Down’s Syndrome cruelly.
She replies by saying she has a sister (I think) with Down’s and all she wants is for people to treat her like they treat everyone else. Bottom line: Lynch is as an asshole to everyone.
Can’t argue with that logic.
I want to be treated like everyone else too. Healthy people could all die at any moment too. Stop pretending they’re different than me. I can still have a heart attack or get hit by a bus. Treat me like that.
Treat me with care, not caution.
So I must start from scratch with a new patient appointment. And my medical history is complicated. And the brain fog. And the anxiety. My last “get to know you” appointment was two hours long.
One very good thing about Lexapro: my highs are as high as my lows are low.
I made it to my doctor’s appointment today—the one that was supposed to be Friday—and let me just say what a difference a business day makes. I got the order for my AFO brace. WENT. DOWN. THREE. STAIRS. and walked up an inclined ramp, all without a panic attack!
My doctor was happy for me and asked if I needed orders submitted for outpatient physical therapy. I’m content to wait a little bit on that. I’d like to have the foot brace, and I’d also like a little break.
I keep up with my PT exercises, so I’m not concerned about regression if I wait. I’m motivated simply by doing things I haven’t done in ages. I won’t press the outpatient PT issue either because if it doesn’t happen until after MRI and CT imaging at the end of the month, that’ll be much easier on me in terms of managing the angst.
If someone calls to schedule PT before that, I might opt to go ahead. Don’t need to make that decision now, though.
Saturday I took a shower and walkered myself back to bed instead of being wheeled. I know for mobile people, this sounds like nothing. But for me it’s a big fucking deal.
Suck it, Benny Hinn.
I’m still working on my non-dominant, left-handed writing and drawing. I’m really proud of how neat my penmanship has gotten. I’m nothing if not tenaciously disciplined when it comes to self-improvement. I like the way this neat and orderly page turned out:
Sometimes I’m really tired, though, and my brain wants to do more Zentangle-inspired practice
Still raising money for dental work. Remember that small donations matter. Shares matter. It all matters!
I didn’t have the best week. Of four appointments this week, I had to cancel four. An MRI, a CT, a dentist appointment, and a primary doctor appointment. And because those scans didn’t happen, my oncology appointment next week was moved to next month. All of this finagling of my medical calendar is fallout from panic attacks. They literally immobilize me, and I can’t do what I can’t do.
After I flopped and flailed trying to sit up in bed at lunch time, I gave up, and decided nothing was happening today. I figured I’d eat some of Dan’s birthday cake and watch Murderbot to console myself.
All the rescheduling feels heavy, but particularly the appointment with my primary doctor today. I don’t just feel like I’m failing myself by not being perfect, but also because it delays my getting a foot brace. I really, really want that foot brace.
I want to walk outside on a sidewalk, and I believe the brace will help me unlock that ability.
Physical therapy has helped me a lot. It has given me hope that I can be much more independent again, but it hasn’t exactly made me patient. This impatience is deeply embedded in my personality. I was the kid sister who learned to read and write because my brothers could. I wanted to do anything they could, just without waiting until I was their age.
On Wednesday we drove all the way to the hospital in O’Fallon for my regularly ordered imaging. After an ORDEAL™ getting into the car, I cancelled in the stinking parking lot, convinced I was a total failure and bummed I put everyone (OK, just me) through all that for nothing and inconsolable that I’d have to try again later. With no promise that any future attempt would be fruitful either.
That night I did that breath-catching sobby thing that toddlers do until I fell asleep. Hyperventilating, basically. Very few actual tears though, because panic attacks get me stuck in a prolonged freeze response. There’s no actual crying when your brain is convinced you’re dying. So it just gets lodged in there.
The more you know. đźŚ
i haven’t had a real cry since my dad died four years ago. Which is very not me. I’m an out-and-proud crier. A sympathy crier. A happy crier. An overwhelmed crier. A proud crier. Time was you could boil pasta in my tears.
Odd as it sounds, dry sobbing is an improvement. I get the sense I’m climbing up a scorching metal slide with my feet buttered, and eventually I will reach the summit where the waterworks will go nuts. Then I’ll have all of me (if not my body) back in working order.
I never really understood emotional repression of this magnitude before now. I am the kind of person who just leans in, usually when I’m alone. I am never alone now. I don’t let myself work through anything because I’m worrying my sadness will be contagious and so then I repress to save others from heartache and in the process fuck myself up.
God, this fucking cancer. The tumor isn’t half as problematic as knowing I have one.
But being unable to ugly cry and feel my feels feels awful. I want to purge it all. Why is that so hard? It’s like when my stomach turns sour and I start fantasizing about a good vomit.
Yes, that’s a Napoleon Dynamite reference. Yes, I’m one of like three people on the planet who thinks that movie is hilarious.
Midwesterners are traditionallly not very good at goodbyes. The Midwestern Goodbye™ is a thing where someone doesn’t leave until at least half an hour after they’ve announced their intention to leave.
In some cases, it might be a result of heartbreaking feelings about leaving. In other cases, someone might feel it impolite to tear the bandage off too quickly. Most of the time, though, I think it’s just customary.
There are always exceptions to the rule. Medical appointments, or appointments in general, spring to mind. In an effort not to make someone late for the next thing, goodbyes are wrapped up pretty painlessly.
I mostly feel like that’s how it should be, everyone respectful of everyone’s time.
But today was my last session with Pedro (not his real name) and the goodbye wasn’t Midwestern enough for me because I knew he had to get to the day’s next patient.
If I’m honest, a lot of that angsty sadness has to do with how I experience anxiety right now. I’ll be moving on to outpatient PT just up the road, and I have to leave my safe space for that. Both physically and emotionally.
Credit where it’s due, Pedro was a safe place.
I think back to the time when I did the Couch to 5k and ended up with pain in my right hip and leg.
The sports medicine doctor didn’t see anything glaring on my X-ray, and recommended I start PT to strengthen that leg and fix my minor gait issues. I dutifully obeyed, and the PT I saw at the outpatient clinic noticed my IT band was tight.
He did the thing where he tried to get my muscles to let go by scraping the outside of my thigh from hip to knee with his forearm. I screamed out in excruciating pain, and everyone there—about 20 people—stared at me as I curled up in the fetal position on the table.
I hate being the center of attention in a group.
I also hate feeling weak.
To be fair to that PT, none of us knew what we didn’t know.
I didn’t cry that day because I didn’t want to cause a scene, but I was weeping on the inside.
It was traumatic, the bolt of hurt that shot up the offending nerve and lodged for years in my brain. As the incubator of a slow-growing astrocytoma, there was probably some tumor stuff going on already. There was absolutely repressed anxiety.
In contrast, the first time Pedro stretched my right foot I said, “That feels good.” I was shocked, and because I was emotionally a little raw, I was also surprised I was surprised. My shock probably registered on my face. I have a hard time controlling my expressions now that I’m working on feeling more feels.
That’s not a bad thing, just not historically a thing I do. I’m still working out the kinks.
Anyway, for something like eight weeks, Pedro has been helping me regain the muscle strength I thought was lost forever. And while it’s very empowering to stand at the sink and brush my teeth again, it’s a million times more beautiful to feel the fog of depression clearing in such a profound way. In hindsight I can see how depressed I really was.
I’m independent to a fault, but need help with so much. That’s left a mark.
Naturally I’m a little scared about what physical therapy will be like without Pedro. A little scared I’ll backslide. That I’ll end up in the care of a professional asshole and flip out.
Even Dan was like, “Can you have another surgery or something so Pedro can come back?”
I didn’t have a chance to tell Pedro all of this because there were other patients to be seen and there wasn’t really time for that Midwestern Goodbye.
I’d have probably been weird and got teary anyway because at the end of sessions I’m running on fumes and emotionally as raw as uncooked ground beef.
Odds are good that the Midwestern Hugger in me would have forgotten that some people* don’t want to be squeezed and you don’t always know who they are.
Bottom line is I’m team Pedro. When medical procedures lurk in my future**, I will remind my anxiety and depression that Pedro offers me his protection.
* Like the doctor who robotically puts a hand on your shoulder. You know the one. The one that says “I was taught that touch conveys empathy in medical school, but I maintain detached indifference. This gesture is a pointless ritual.”
** Next opportunity to practice being chill are the routine MRI and CT on June 4th. So scanxiety can suck it.
I’m feeling better today, pain-wise. So much better, in fact, that I have had my bra on for eight whole hours. Usually the bolts of pain in my neck and shoulders have me feeling like I can’t go a minute longer in discomfort, but today has been good enough that, if I could work, the bra would’ve stayed on until I was driving home down the highway.
Just pictured myself driving I-465 in Indianapolis on my way home from one of my crappier jobs holding a bra out the sunroof as it flapped like a checkered flag and chuckled. That might really fix me. If I could drive.
It’s been a beautiful day. In fact, we’ve had a couple in a row. I’ve been using the Merlin app to track the birds migrating the last couple of weeks, but those good ol’ Song Sparrows are a gosh dang delight. Other birds are more colorful and more exciting to ID, but the Song Sparrows are consistent comfort. I dig that about them.
Next week is my last scheduled week of in-home PT. Am I ready for outpatient therapy? Probably. I mean, they know better than I do, and I suppose it’ll be good for me to move on. But I can’t take my PT with me, and that has me feeling ways. I know it’s a job for most healthcare workers, but sometimes as a patient one just hits different. The anxious me is on the inside like a toddler having a meltdown, “I don’t want a different PT! I like this one!”
Change is hard. I’m trying to strike a deal with myself that I can have an ice cream if I’m brave.
The anxiety compounds the problem and I’m forgoing cognitive therapy until the dentist stuff is paid off. I’ve come a long way, especially where panic attacks are concerned, but I don’t want to stall out yet worry that I will.
What if I don’t trust the next PT?
Now I’m thinking about those ridiculous trust fall exercises that were so popular and seemed so harmless. The best way I can sum up my GAD for those not in the know, is that I’m a literal fall risk and I don’t trust me to catch me and I’m convinced I’ll take out every one in my path on the way down.
“Don’t worry, you’ll fall on me if you go down!” Everyone says that. Inside I’m like, “OK, but that’s also what I’m afraid of!”
When I buckled in my primary doctor’s office parking lot the other week, Dan asked what my doctor said about them scraping me up off the asphalt.
“They told me to stop apologizing.”
“See,” he said.
I need to come to terms with self-blame, but I haven’t figured out how yet.
Sometimes I feel sorry for myself and eat Oreos. Today is one of those days. Relative to recent feelings of accomplishment, today sucks. I know that comparison is the proverbial thief of joy, but that doesn’t mean my brain can stop comparing.
I want every day to be a little better than the one before, but that’s not how it works. And the recent weather changes, what with the storms and tornadoes and all, have landed me in the land of elevated pain levels. Which makes me not want to move. Which depresses me.
Shoves Oreo in mouth.
Part of my problem is that I’m fundraising again. I don’t have words to describe how exhausting and demoralizing it is to need money to live while asshat billionaires have asshat far-from-billionaires convinced I’m the useless eater.
At times like this my mind goes back to the insurance company peon who said I didn’t deserve health insurance (and therefore healthcare). I know it’s bullshit—that she’s the reprehensible one—but that doesn’t mean that I’m unaffected. And that doesn’t mean there aren’t days when the bastards get me down.
I hope one day the brain tumor cells I donated to science save someone she loves. Partly because everyone deserves a life free of cancer, but mostly for spite. Because fuck her for living rent free in my head. The astrocytoma takes up enough space.
Eats another Oreo.
Another thing: some days I feel like an untouchable. Though I have plenty of evidence to the contrary, being 8 years out from diagnosis leaves the brain to wonder why I’m not dead yet. And if I wonder that, what must everyone else be wondering? Of course I don’t know, but my brain is very good at imagining people are tired of me existing.
Maybe it’s survivor’s guilt. If so, it’s more self-centered than I thought.
Maybe this Oreo will help.
The forecast says the barometric pressure should stabilize soon, so I hope my complex migraine will fuck off with the storms. It makes me crave sugar, and I feel like everything inside my skin is three sizes too big. I feel like the undersides of the skin of my left side have suffered rug-burn.
It’ll subside, along with the tongue swelling caused by black pepper and the oversensitivity to light and fragrance when the inflammation recedes. But until then, I’ll just have another Oreo.
I’ve been eating and brushing my teeth left-handed. How about learning to write left-handed too?
When I went to the doctor last week, I filled out the laminated anxiety assessment form. Standard procedure for most primary visits these days, but particularly for a patient on Lexapro.
“You’re using your left hand!” Dan said.
My right hand is simply too weak to hold a pen, and has been for a while, but wielding that dry-erase marker in my non-dominant left hand was possible. So I gave writing with it a shot. A few poorly drawn circles and a legible “7” later, I was like, “Hey, maybe I can just, like, write left-handed.”
So I’ve been practicing and posting my progress on Bluesky. If you follow me there, you probably know how far I’ve come already.
My maternal grandmother had the most gorgeous handwriting. The script she learned in school was different, more elegant than the D’Nelian I learned as a kid. But she had a beautiful flourish on top of it that I wanted so badly to mimic.
I never achieved her level of penmanship, but all those years of trying did help me fine tune a neat and tidy style of my own. Trying to transfer that from my right to my left hand is challenging. I have to take great pains (and I do mean pains) to be slow and mindful with each stroke.
I’m not displeased with my progress at all, but I will continue trying to improve my speed and legibility. My first goal is to be able to fill out my MRI form myself in June, when my next regular MRI/CT is scheduled.
Here are the other practice sessions I’ve completed, including trying some Zentangle patterns on Day 7, which I’m thinking of making a thing—to give myself a different challenge so things don’t get too boring.
Someone wondered if workbooks for writing would help, And that sounded like a pretty good idea to me. So I’ve added a few things to my wishlist and for now I will keep practicing with unlined paper. It’s more difficult to maintain even spacing, but that’s part of the challenge—and the fun!
Some of you will recall that my old blog from a decade ago was called Two Write Hands. Self-fulfilled prophecy, baby!
As the anxiety subsides, I’m feeling more and more like doing stuff. Here on the blog, and in real life. So I’m circling the block, looking for a place to park the struggle bus. More on that in a minute. First, how I’m doing:
I’ve been taking Lexapro (escitalopram) 5mg for a little over three weeks now, and it’s working in a cascading fashion. One good thing clears the path for another good thing, and I’m here for it! The most significant good thing I notice is that I’m sleeping so much better. I was depressed for sure, likely due to the constant anxious thinking and lack of sleep.
With anxiety down, I don’t buzz with panic as soon as I turn the lights off. Instead I feel sleepy. I have weird SSRI dreams*, and I sleep through the night (when my bladder allows, of course). Even Mom was like, “How’s that Lexapro working out for you?”
Yes, folks, I have reached the portion of the anxiety deprogramming where other people are noticing.
I’ve started virtual EMDR therapy** and continue to use the Unwinding Anxiety app. Major muscles that were once in perpetual spastic contraction have started twitching. (Once upon a time, I would have considered the twitching an annoyance, but now it feels so good.) Overall I feel like things are unspooling nicely. I still have panic attacks far more frequently than I’d like, but I don’t feel helpless about them.
With my new moments of mental clarity, I have decided that I want to make this blog and website more for me. I love you all and enjoy thinking about what my audience wants as I was trained, but I need an outlet for my stress and to give myself permission to play. It may not be noticeable to you, but it is a seismic shift in how I think about what I do here***.
So without further ado, here’s what to expect going forward:
transitioning my memoir chapters to personal blog essays, published at regular intervals
functional and aesthetic updates to the site
continued guest posts on related topics
continued day-in-the-life, review, and chronic illness ramblings
Earlier this week I took a normie shower (as opposed to bathing with cleansing cloths) and a few hours later I was mulling over how it went and the progress I was making when I realized the water didn’t feel like razors cutting me open. I thought to myself, “That was so normal I didn’t even notice how unpainfully normal it was!”
I’m amazed at myself. People, including me, who thought I had strength and resilience when I was diagnosed with cancer should be in awe right now. GAD and panic attacks are the hardest things I’ve endured to date. They make the existential crisis of living with an inoperable brain stem tumor seem trivial. When people tell you they deal with anxiety, I hope you’ll be the kindest person you know how to be. TGIF, kids!
** I have thoughts. I’ll probably blog about them in a future post. For now I will say that I thought EMDR was just woo but it’s not, and it’s helping.
*** For example, I remember (wrongly) thinking to myself many years ago, nobody wants to read about good things. I need to make this blog all struggle bus, all the time.
Three days in a row I had to deal with some stressful things. This is my anxiety progress report on those things: showering and a haircut Sunday, cleaners cleaning Monday, and an oncology appointment Tuesday.
First, before I take on these things individually, I need to take a moment to remind myself that doing three days of stressful stuff before now would have been unthinkable, but I’ve been doing virtual, self-guided therapy and taking Lexapro and things are changing for the better.
It’s amazing that I attempted them. Before-Anxiety Disorder Emily wouldn’t have thought much of any of this. However, the Emily that has panic attacks just because would have needed days between each thing and will still feel horribly incapable.
Whew! I was having depressed, anxious tantrums a couple times a week. I’m so glad something gave, and it was the anxiety—not me.
Showering
Mom buzzed my hair for me. A completely passive and calm experience under normal circumstances, but with panic? Totally draining. And then there’s the shower.
This is still quite difficult for me, but there were moments the running water felt good, and that is huge.
Before, the water stung and I could barely move. Now I get a few minutes of “Hey, this experience isn’t a sensory nightmare!” before the awful sets in. Which may not sound like much now that I’m writing it, but it is significant. I promise.
I slipped getting up which caused all my muscles to seize panfully, but when Dan wheeled me back to bed I didn’t shiver from panic and recovered quickly. I also stood up and transitioned to the bed smoothly.
Cleaners
Every two weeks a lovely crew of about three or four cleans the stuff we just can’t: floors, the shower, etcetera. We round up the cats and get out of their way so they can work efficiently.
In the past, this has triggered panic attacks that basically paralyzed me. I could barely get in and out of the king bed. I often tell Dan I feel like a beached whale when this happens. I can’t move my arms out of my body’s way. I can’t reposition myself. I can’t roll over. He’d have to help.
Then that level of immobility would create a feedback loop of anxious thoughts in my brain that would cause my freeze response to double- and triple-down on the terrorizing, panicky spiral.
I’d worry I’d be stuck there. Worry Dan would hate me. Worry I’d hurt him somehow with all the physical help I needed.
Worry. Worry. Worry.
Yesterday, though, I got into and out of bed myself.
Oncology
I went down two steps into the garage yesterday instead of using the ramp—with a lot of help. It wasn’t at all pretty, and there were a couple times I lost my balance and Mom said “whoa!” as she looked on. But I tried.
The attitude of “let’s see if I can do this hard thing” is its own step in the right direction.
At the cancer center follow-up (which only included routine stuff, yay!) the phlebotomist noticed it was a couple of days past my birthday. We discussed cake—always a pleasure—and she gave me a toy ring as a present. I’ll leave you all with a very short video of the light-up ring in action.
(There are flashing lights, so if that’s problematic for you, don’t press play.)
And that’s my anxiety progress report. More about the various treatment thingies I’ve been trying, too, in a future post. I’ve been trying EVERYTHING.
