I don’t even know where to begin. So I’ll just say what I feel: Eat a bowl, haters
The last few days have been epically bad. First I went on nortriptyline, then I got notice my divorce forms had mistakes, then I went off nortriptyline, then Rudy got mad at me, then I had a neverending panic attack, and then I got brain zaps. And I still can’t feel my hands.
To deal with panic attacks, my primary put me on nortriptyline in addition to the Lexapro. Mom is pretty sure I had a seizure on the nortriptyline, which I’ve taken before. I didn’t anticipate a problem except for being groggy.
It was a problem though—I couldn’t remember how I got into a wheelchair—and I feel like I have regressed, not improved. Logical Me knows that’s not how any of this works and recovery is not a straight line but Reactive Me is worried that this is permanent. That I will never get better.
In the middle of all of that, I got a notice from the divorce people that stuff was wrong with my paperwork, and in trying to fix it I kept creating more problems. So I’m in limbo until I hear back. The last I heard was something like “will mail these to you if all looks good.” That if is doing some seriously heavy lifting.
After 2 weeks of giving nortriptyline a shot, it was clear it wasn’t working so I went off of it. And like going off of all antidepressants it wasn’t a lot of fun. My blood pressure bottomed out to the point I was fainting just trying to sit up. Of course no one believed I was that sensitive to that little dosage, so I had to overexplain myself and not say “fuck you” to everybody who was worried. The restraint nobody knows I’m spending energy on y’all.
Then the other night Rudy got mad at me. He said “f [my] attention” which he explained away, but it’s just not sitting right with me. I have a standing agreement with myself not to make any regretful life decisions on weed or suffering withdrawal from antidepressants, so I’m biting my tongue.
But it feels razor sharp in my mouth right now. If there’s one thing I can still cling to, it’s my impulse control. I think that comes free with every anxiety disorder. That whole fawning to save my life thing.
Speaking of anxiety, all of this chaos has given me one rolling panic attack. As soon as one clears, it feels like another is on its way. It’s disheartening because I was actually doing quite well…
I’m sorry, I must interrupt. My blood pressure is still really low, but I pooped! This calls for a celebration! Please happy dance in place.
The Brain Zaps were intense and numerous yesterday. They have been weaker and fewer so far this morning. I’d like for them to have not happened, but it’s not for nothin’ I’ve been called hypersensitive to drugs.
And last but not least, my hands. I can’t feel a damn thing with them right now. So it’s super hard to use my phone and eat. Trying not to get trapped by anxious and depressed thoughts with all of this going on?
Today is a little bit better than yesterday. I started virtual EMDR therapy this morning, and it helped. By the end of the 30-minute session, I went from seeing double to seeimg a single dot.
In Nystagmus Land that’s quite a feat actually, and I’m proud of it. Plus I sat up the whole time, which was an extra bonus for my circulatory system.
I ate lunch without choking. When I enter panic mode it’s really hard to swallow sometimes, so an uneventful meal is something to cheer about. The last thing I need is a phobia about eating.
In general I’m steadier on my feet and less likely to tip over. That’s reassuring. These constant changes in my physical abilities are one of the things that makes me so sure this is panic. (It helps that when I had scans done for brain stuff, they turned up nada.)
Still no cathartic cry, but I’m ready for it when it happens. To be honest I’m exhausted always being on the brink. Just wish it would happen already.
Last night was particularly hard on my mom. Things were rough, and she is a sympathetic crier. That’s how I know I should have been crying. I had my relaxation playlist on and “You Can Do This Hard Thing” by Carrie Newcomer played. I think it was the first time she’d heard it. It kind of hits hard for both of us.
It’s warm enough here but very gray and cloudy, which has my spirits down a little more than usual. Going to rest and meditate now and see if that helps.
There’s a drafted email in my folder spelling out all of the good things about Dan. Because panic attacks do a number on my memory, I wanted to make sure I remembered all the things. I wrote them down in an email draft dated August 2024. That’s how long (that I have documented anyway) I tried to wake him up to what was happening.
So to say that it irritates me when people think I’m jumping into a new relationship so soon, is quite the understatement. By the time I let people know what’s up, it’s way past the the time the trouble started. Also I tried to get him to leave several times, and he wouldn’t. That’s not on me.
I’m just going to let people think what they want. I simply don’t have enough fucks left to give. I get to be happy now.
The day before he left, Dan startled me and I fell, hitting my head on the barhroom tile and on the cabinets on my way down. He helped (I used the term loosely) me in his usual hasty manner, hitting my head on the cabinets again.
Really helping me would have been accepting my boundaries and staying away, caring enough not to send me into a panic in the first place. Like I asked of him more times than any wife should.
Anyone who thinks I have grieving left to do over this relationship, including myself, is expecting blood from turnips. I’ve been over this shit for a long time.
Another thing I want to get off my chest is that it irks me that he uses depression as an excuse for everything bad he ever did to me while my anxiety wasn’t real. I was just mean.
I learned a long time ago not to expect apologies, but it’s hard for me not to be pissed off when the non-apologies flow so freely.
One of the things that I am realizing is that Dan was always in a rush to get me up off the floor when what I needed was for it to be okay that I was on the floor.
The bed became my safe space because if I was in bed, then maybe he would leave me alone. I thought letting him do things his way meant that his anxiety wouldn’t become my anxiety, but I was wrong. He’d come in and prod me raising my angst and priming me for another panic attack. He never had a good thing to say, and it hurt.
I know caregiving isn’t easy, but neither is being a patient. I told him we just weren’t compatible anymore. But even that was a fight I didn’t have energy for.
Living my life in bed all the time to avoid needing his help made me more anxious. I was taking up such a small space in my own home, and it was profoundly damaging to my physical and mental health.
What I wish I knew sooner was that I was making things harder for myself trying to appease him. As they say, I should have been putting the oxygen mask on myself first.
It feels foreign to me to be listened to now by my family. I would ask Dan for passive help like telling me “it’s going to be okay” or just listening to the way I wanted to handle things. But I was never given that agency and it did a lot of damage. Everyone now seems to be listening. It feels remarkably safe.
My panic attacks are so bad now though that they are stroke-like. But I’m getting better, and it is empowering to see how quickly I am getting better. I already feel like I’ve made huge progress and it’s only been a couple of days since Dan left for Las Vegas.
I can do hard things. As Carrie Newcomer sings “Impossible just takes a little more time.”
In November I wrote an email professing my love for Rudy. I don’t know what came over me. I just know that my feelings were strong enough to override the Feelings Kill Switch that my brain thought it needed to rely on to protect me. So my fondness was intense.
I’d already told Dan I wanted him to leave, and he promised he would, but he never followed through. I found myself thinking constantly “I don’t want to live the rest of my life like this. Whatever time I have left.”
***
Cancer made me bolder. Plus I’d spent a lot of time learning to reflect on my feelings while trying to cope with GAD.
Something that sticks with me from Tara Brach’s podcast is the self-reflective question “What am I unwilling to feel?”
I was unwilling to feel a lot of things, but mostly I was unwilling to feel happy. It seemed like as good a time as any to stop the self-destructive bullshit. To my surprise, Rudy’s response to my confession wasn’t “You’re cool and all, but…”
***
Rudy and I had been casual online friends for years because the Brain Tumor Fairies sprinkled us with similar dust. We started talking everyday, though, when the cancer went all in for another round of “What could possibly suck worse than this?”
When I did a thought experiment considering how I would feel if I never spoke to him again, I knew for certain how I felt about Rudy. And although things are messy, I think they’re beautifully messy.
***
Anyway I want the world to know that a new main character dropped.
On Saturday Dan left for Vegas. He is staying with family, has quit smoking, and has started therapy. Call me conceited, but I think I saved him. He said as much, but I don’t have a lot of confidence in him meaning it. I, however, whole heatedly believe it.
The last month has been hard but it could have been harder, so I’m just counting my blessings. Mom is taking care of me and my brother and sister-in-law are taking care of the cats. Dan will come back in about a month to pick up his things and do whatever he’s going to do next.
I’m going to get better.
I’m too tired to write much more than that at this point. I’m not feeling angry or bitter. I’m just taking care of myself the best way I know how, and that’s to rest during tumultuous times. Which means if you want to stay updated watch this space, because I don’t have it in me to repeat myself.
In sixth grade science class, we were sitting at our assigned tables watching a video about Galápagos tortoises. Or we were supposed to be anyway.
Brad and I were playing football with one of those origami footballs. I don’t know which one of us folded it anymore, but we were giggling and having fun and not being studious in the least.
The origami football was lost to some classmates at another table when I attempted a field goal and missed colossally. Undeterred, Brad decided to make one of those origami fortune teller things next.
For the uninitiated, origami fortune tellers are little papercraft games where a player picks numbers, the folded paper is shuffled a few times, and then the player picks a random flap to open, revealing a fortune, or a joke, or whatever the maker decides to write.
For some reason, I got a feeling deep in my toes that Brad was into me, and he was going to use this game as a way to tell me. I looked across the table as he filled in the game with the requisite numbers and fortunes and became nervous.
Suddenly I was very interested in the video about Galápagos tortoises. I focused on the hundred-year-old creature as the narrator droned about evolutionary science. Even though I was into Brad too, I was, I don’t know, scared of my feelings or something.
Adolescence is weird. Leave me alone.
A couple of days later, curiosity overtook me. I had a chance to sneak the game from Brad’s desk and read the fortunes he’d written while he was out in the hallway. Seven of the eight fortunes he’d written were innocuous. Stuff like “this class is so boring” but one fortune said “I like you.”
So I was right.
Last night a fellow cancer survivor and I were chatting about edibles when he started sending me DMs. He was high. I was high. And his messages got vaguely suggestive. My self-talk is crappy enough that I sometimes miss more subtle cues because I don’t think anyone could have any interest in a woman with a brain tumor. But sometimes things finally register.
I was like “Oh shit, he’s about to send me dick pics.”
In his defense, he was not menacing or aggressive. Sometimes people with cancer need to feel good and feel alive. I don’t judge. Sexting folks halfway around the world though? Not my thing.
He was merely trying to gauge my interest, and I was suddenly 12 again not knowing how to simply be like, “Naw, dawg. Thanks though.” So I blocked him.
Cancer is weird. Leave me alone.
This morning I fell* trying to brush my teeth. The toothpaste was near the end of the tube. I looked down, trying to force out the last bits of Crest. However, I looked too far down, and my nystagmus kicked in.
The dizziness and struggle keeping the toothpaste on the brush led to imbalance and a panic attack. I tipped over when my muscles and my brain stopped communicating, but not without yelping a frightened, “Help!” on my way down.
Instead of being mean to myself about falling again, I stared at the bathroom ceiling and laughed about how hot I must look sprawled out on the cold tile floor.
It’s not my fault I’m a thirst trap. Leave me alone.
I had an oncology visit this morning. The MRI results came in Saturday and had me anxious. The report said the tumor showed slight growth. I don’t fear death, but I do dread me some chemo, and my mind was stuck running through all the prep and barfing in my future and internally I was screaming “no chemo!”
Basically, I was worried I’d worry and lose my progress with PT and anxiety if I had to endure treatment right now.
Turns out the radiologist was just thorough. My oncologist said it was compared to a 2022 MRI not the last one, and it wasn’t significantly bigger anyway. I don’t have to go back for an MRI for six months or see the oncologist until January.
[Insert giant exhale here.]
This was a very significant test of my progress handling anxiety. I learned two things: 1.) when things are hard, I need to up my dosage of weed, and 2.) I have made a shit-ton of progress recognizing and allowing panic attacks.
Yesterday was one of my best days in a long-ass time, and with an oncology appointment on the brink, that’s saying something.
I took a few stair steps getting to the car this morning. They weren’t as smooth as I would have liked, but I did them. That’s like twice now. Go me!
I think the AFO brace I was fitted for last week will help with that stair stuff too. My right ankle needs to feel secure so I can feel safer on my feet. That’s a few weeks out though. And I’ll keep doing what I can in the meantime while the brace is being fabricated.
That’s all. I finished the last of the apple cider gummies, so it’s time to pick a new edible to try. I’ve got pills, a snickerdoodle, and a drink mixer. Decisions, decisions!
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.
Sometimes I chastise myself for overthinking things, especially when it comes to anxious thoughts. However, I’ve realized that no one else is going to analyze this stuff for me.
I do self-guided therapy because of the expense (financial and otherwise) of traditional therapy. So thinking about things deeply is to dwell in the belly of the beast. It is not pleasant, but feels necessary.
And that’s about all the context needed for readers of today’s blog therapy session.
When I was very young, like maybe four, we went on a vacation with my grandpa that included a family reunion in South Dakota.
Somewhere along the way we stopped at an indoor water park. My grandpa was supposed to catch me coming down a short slide into a pool that was small and maybe four feet deep. At my age, it might as well have been twenty feet deep.
As I was going down the slide, my dad was launching off of a trapeze in the big pool. Grandpa turned to look at his son as I was coming down the slide and didn’t catch me. I was in over my head, and I couldn’t swim. There was much coughing and sputtering complete with the burning sensation of chlorinated water in my nose and lungs.
After all the warranted fussing, the adults tried to coax me back in the water with a flotation device, but I would have none of it. My lizard brain figured my odds of not drowning were better if I just stayed out of pools.
(I hated pools until junior high, and probably would have hated them longer if I was OK with my classmates knowing I was a big weenie.)
For reasons that seem obvious to only me, anytime Dan looks at something shiny when I am trying to keep my balance, I flip the fuck out and have a panic attack.
Falls are the new drowning.
On my way back downstairs after a recent session of occupational therapy, Dan looked away from me as I white-knuckled the Rollator from carpet to vinyl. Seeing him distracted while I felt unsteady, I said, “My brain needs you to pay attention to me!”
Onlookers may have been shocked at the terror in my voice. I wasn’t.
It’s been about 24-hours of barely speaking to Dan since yesterday’s stalemate. I’ve decided that I don’t want the burden of his anxiety when some days I’m barely capable of handling my own.
He can face his anxiety or not, but I don’t feel calm. And the only way I see to avoid serious regression is to minimize the number of panic attacks I endure.
Unfortunately, while the quiet tension mounts, I remain in a cycle of disordered panic. I can’t sleep, my feet are cold, I spend hours at a time curled up in a fetal position. I recognize the physical pain of being tight and closed, but it’s involuntary. It seems as soon as I stretch out, I find myself in a ball again. With no idea how I got there.
So I went all of today not asking for his help with anything. That way I don’t have to navigate the guilt of his sighs or listen to him remind me that he’s been in pain for 30 years now.
To be clear, I am not dismissive of his chronic illness. It’s just, to be perfectly blunt, his PsA doesn’t cure my fucking cancer. I keep reminding myself I didn’t choose this tumor. But I don’t want to have to keep reminding myself. I’m tired of reminding myself. I feel like I’ve earned a little tantrum, as a treat.
For eight years I’ve been saying to anyone who will listen, “I want one thing not to be a fight.” And my progress with PT? Well, no fight! It was glorious!
But here I am fighting again when I feel pretty strongly I shouldn’t have to. I can be stubborn and entitled too. Like, dude, work on yourself because your anxiety and depression clearly affect me. And I DO. NOT. WANT.
Ninety percent of the anxiety I experience now is me trying to determine what my giant man-baby needs so his fee-fees don’t get hurt.
Because he won’t just say it out loud. And he acts like he’s doing me some big favor by holding everything in.
