#i don't think i can cope with needing to regulate her out of an anxiety response right now and i understand that means i can't need care atm
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I feel like the post I just reblogged pointing out the all-or-nothing in how many people interact with their deconstruction of systems of oppression is resonating for me right now with so many different moments in my life where someone decides that because some part of myself has access to some of the levers of control/influence/etc that come with the relationship to power, and decides what that must mean about all the other parts of me that might be explicitly refused access to those same levers.
It has happened in so many spaces/aspects of my life, and it can be so hard to feel safe and seen and trusting of others when that's my chronic relationship to being perceived - half truths and obfuscation.
It doesn't really change regardless of who's doing the assuming either. Like, where they land in relation to systems of power may influence which direction they lean in their assumptions about me, but even that is often inconsistent. Both sides of the equation (those who share my marginalizations and those who exist in spaces of closer proximity to power) will still do it nonetheless.
When I was doing my liminal social identities work in undergrad, this was actually a big part of the conceptualization we explored of traumtic alienation of self as individual from self as collective, and what it can do to people to exist in this liminal relationship with your environment and the people in it. As I'm starting to gather my thoughts about my stress modeling, this conceptualization is bubbling back to the surface. I'm finding myself meandering through it on both a path specifically my own, and in an effort to better understand what other paths may be available to people during their version of the process/experience.
Selfhood is so fragile, and so in need of balance between self-construction and co-construction for us humans, and that gives us so many beautiful, even spiritual, experiences of meaning making and generativity of self. It also createa many pivot points where we may find room in our path for vulnerability or blurring of self. As much as these pivot points can be distressing, I think they also sometimes become our foundations of change/personal evolution, when we find that through the distress of existing in shift, something meaningful is occurring or observable in our experience of self-in-transition.
I think something I've valued especially about my own relationship with self is its transience. It doesn't always end up somewhere I would be happy to sustain, but it always allows me a degree of comfort in complexity that I think has made my body-mind a safer place for me overall.
#one day i will understand how to convey self in a way that is Mine and also Effective Communication#but lord knows it ain't today#it's always so interesting to me the way people decide to position me in their social/power schema#the funny thing i think is that even as a toddler people seemed to assign me a seriousness and gravity of social value that was both#irrational and inexplicable and in many cases wildly inappropriate#apparently one of my auntie's got in a bad way of 'consulting' me like her personal spiritual guide when I was like#two years old????#and she had to be like#you can't keep talking to my toddler about this stuff#that's an extreme one but like#it's also in line with the trend#i don't think people realize how dehumanizing it feels to be Assigned Moral and Social Weight and Value like that#it makes it so painfully clear to me that i am expected to manage to accommodate everyone's needs while never having#or at least never expressing or acknowledging in the presence of others#any needs of my own regardless of their impact on me#sometimes I think people assume that I went into the fields I did as like. a white knight type motivation#or like#that going into the field is what's made me the way I am#and like.#not really. it's more that I knew my role in life was 'other people's emotional regulation/go-to anchor' as long as I've had self-concept#and at a certain point you've been playing that role long enough that your options are either#become a subject matter expert and contributer to the field#or fucking kill yourself#because you certainly can't keep doing what you're doing#i dunno. i guess i just wished there was anyone in my life i trusted to see me as the fully complexified and messy human I am#i might feel a little less like i'm the only real thing in my life#anyway i think i'm gonna go. dissociate out of existence for a while before i get the kind of suicidal that's going to worry wifey#i don't think i can cope with needing to regulate her out of an anxiety response right now and i understand that means i can't need care atm#you ever just get the feeling that you're drowning under the weight of the needs you just can never seem to meet? i do.
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I had a very good day today.
My support worker came to the house for the first time! It is my first time meeting her in person. Her name is Emily and she is lovely. (She also has very cool hair).
She was here from about 11am - 5pm. I got to take my time and take breaks to swing and rest and be alone. Emily, Mum and I had a chat in my room before lunch. I used my AAC and Mum helped me tell Emily things about myself. Communication is much easier with Mum there - I was a bit worried about getting stuck or having a shutdown and not able to cope with a Person there at all. But I did well, I think!
Then I had lunch and a break for swing and Grey's Anatomy. I was quite anxious in my body - tense, sweaty, a bit shaky. Even if I logically know that everything is fine, my body has an instinctive reaction as if I am in danger and not safe, every time there is a Person there in the house (usually this doesn't include parents or sister, because I am used to them living in the same house. But on some days it is absolutely everyone, no matter who). New People are especially hard.
It is also rather hot weather today (18°C!) so that threw me off sensory-wise. I had to take more time to regulate.
In the afternoon I decided to be very brave and play a card game with Mum and Emily. We did three rounds of blackjack. It was a lot of fun! We each won one game. I was still a bit tense, but I was also very proud that I did so well.
I really like my new support worker and I am happy and proud and relieved that today went so well. I finished off the positive streak with listening to Martin Fröst (legendary Swedish clarinettist) play Brahms and Mozart while in my swing.
Wednesday will be my day with Emily from now on. I am really hopeful that this can help me learn to be less scared and anxious around people. Or at least widen the group of people who my brain recognises as "safe". And it is just lovely to spend time with someone and laugh and smile. And get to tell someone new about my interests!
I also have been texting with my best friend in the past week. That is very nice. They are also friends with my sister and quite often pop round our house to hang out, although not with me (because, y'know, Very Disabled - I am sure I don't need to give the full explanation here!). I hope to work towards being able to be physically in the same room with them and hang out, eventually.
It is different with someone I already know, who knows me for years back. There is different mental blocks and barriers and obstacles for both New People and People Who Know Me. It will be a slow process, with lots of teeny tiny baby steps. But I have to start somewhere! So, next time they come round, if my bedroom door is already open, they will pop their head in and wave. That's it. Just wave.
I hope to write more in detail about my "brain barriers" (just what I call it because I don't have any other words) in general, especially relating to Other People. It is a tough topic, and very hard to find words. I have been trying hard for over a year to write anything about this, but the progress is incredibly incremental.
Anyway, now I will need a lot of rest, I am knackered! My body is still in a heightened state of anxiety from a new situation and New Person and how much stimming I had to do to regulate. Usually in the evening I can finally calm down my body - things get quieter and darker and colder and it is all much better. It takes more time to calm down physically than mentally sometimes.
But it is all so very worth it. And Mum is happy too :D
Time to relax, rest my body, and turn my brain off! AKA: Time to watch even more Grey's Anatomy!
#words from my head#from the chaos of my mind#support workers#autism#autistic#nonverbal#nonspeaking#greys anatomy#aac#aac device#aacdevice#aac user
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🎭 ♾️MIRRORBALL by Taylor Swift is about Autistic masking, struggling to keep up with expectations, kissing up to the neurotypicals and it’s AUTISTIIIIIIC 🙌🏻♾️✨ - warning I fell into a very chaotic mood brace yourself
I will order my evidence from most to least evidence (sort of):
🎵I can change everything about me to fit in - Masking
🎵 I've never been a natural, all I do is try, try, try - MASKING
🎵 I'm still on that trapeze - OMG masking HAAARD
🎵 I'm still tryin' everything to keep you looking at me - MASKING YOUR BUTT OFF FOR SOCIAL APPROVAL u don’t need it Taaay😭
🎵 (For background, don’t @ me) - And they called off the circus, burned the disco down - Disabled people in general were taken to circuses as “freaks” and people would laugh at them. But then they also burned disco, idk maybe they’re just so normal they hate fun😤
🎵When they sent home the horses and the rodeo clowns - YES GO AWAY
🎵I'm still on that tightrope - Nooooo Tay😭😭 She’s still buying into the idea that autistics deserve ridicule because we’re “too dumb” & that we should also try so hard it feels like we’re doing acrobatics in order to MAAAASK
🎵You are not like the regulars - “Wait you’re not ‘normal’ either”??
🎵The masquerade revelers - Love interest is not like the bastard NTs who’d rather see autistics mask💕💕
🎵Drunk as they watch my shattered edges glisten - Either the mask slips (you accidentally don’t mask something) or she’s just hurt from something & it shows because we can’t lieeeee
🎵I'm still tryin' everything to get you laughing at me - MASKIIING to get love interest’s attention BUT I THOUGHT THEY WERENT LIKE THE MASQUERATE REVELEEERS🥺
🎵And I'm still a believer, but I don't know why - She’s thinking a) Maybe I can’t keep up masking, it doesn’t always works, & I might burn out and/or b) What if I don’t need to mask and I was lied to?🤔
I want you to know
🎵I'm a mirrorball - She masks by MIRRORING PEOPLE, ITS A THING & Discloses her autism like “You know that Normie personality you thought I had? Nope it’s just a conglomeration of everyone I’ve ever seen. I’m not like that at all😤😤”
🎵Hush, when no one is around, my dear - Anxiety over people finding out :( Aw Taaay
🎵 Hush, I know they said the end is near - Neurotypicals saying we can’t ever keep a relationship
🎵 You'll find me on my tallest tiptoes - WALKING ON TIPTOE IS A SIGN OF AUTISM
🎵I'll show you every version of yourself tonight - mirroring/imitating as a coping mechanism for masking
🎵I'll get you out on the floor - aka work my brain so hard to get the social & timing right enough for you to actually follow me even though I’ll get an ACTUAL headache
🎵Shimmering beautiful - masking as a Grill (girl)
🎵And when I break, it's in a million pieces - hypersensitivity & emotional regulation, meltdowns
🎵Hush, I know they said the end is near - people thinking YoU cAn NeVeR kEeP a ReLaTiOnShIp
🎵But I'm still on my tallest tiptoes - unmasking bc she’s being vulnerable??
🎵 Shinin' just for you - NO U DERSERVE IT TOO
🎵 Hush, when no one is around, my dear
🎵 You'll find me on my tallest tiptoes - TIPTOOOOE
🎵 Shinin' just for you - NO TAY, LIVE FOR YOURSELF NOT JUST FOR THEEEEM
🎵 Hush, I know they said the end is near - MAYBE ITS NOT
🎵 But I'm still on my tallest tiptoes - YES GIRL YES
🎵 Spinnin' in my highest heels, love - DO IIIIIT
🎵 Shinin' just for you - N O🔥 you were literally almost there Tay!
🎵 Because I'm a mirrorball - BECAUSE I MASK
🎵 I'm a mirrorball - I MAAAAAAASK
🎵 And I'll show you every version of yourself tonight - I MIRROR IN ORDER TO MASK
🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉 *yippeeeeeee*
#actually autistic#autistic community#autistic not weird#autistic culture#autistic pride#autism things#autism thoughts#being autistic#autism acceptance
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I'm reading my new book.
Adult Children of Emotionally Immature Parents.
I was in a freeze state all night and day and slept about 2hrs. I'm planning on getting to bed soon.
This entire book is my parents. Of the 4 subtypes they are a combo of all 4.
The stories in the book much like AA stories almost in a way...they sorta pale in comparison to what I've experienced. I do understand this was written probably for cases a bit less intense than mine.
I was calm most of the day because my partner helped me calm down by "allowing" me to put on my sub collar, wear earplugs, and he picked reading for me. It was extremely helpful. He then had to go to a family gathering and I didn't think I'd talk to him again this evening but he sent me some pictures of the view of where they met up. It was a really sweet surprise that I didn't expect as I was looking at my book and trying to relax some muscles in my back that are locked despite the library of coping mechanisms I have.
I'm still swooning over the pictures he sent. He's not great at taking pictures and I generally hate surprises but this made me happy.
I've called my psychiatrist and left a message to see if they'd call me back. I don't know if they have something temporary till my parents can get me moved that might sedate me enough or perhaps temporarily raise my anxiety med dose. I originally took 4mg and was down to 3on the script but I generally only take 2mgs a day which is a starter dose for my weight. I'm also an ultra fast metabolizer (geneticist tested me, i have the MTHFR gene too and she suspecs more mutationsbut i won'tsee her till next spring) I've tried to explain to ppl before that I'm VERY careful about my meds because I have had to be on them longterm. My now deceased psychiatrist who was also a neurologist explained to me not long before he unexpectedly passed that my brain is on fire from the ptsd from abuse since infancy. It's possible to get me stable if I feel safe etc... and it would be damaging to try to take me off these meds.
You know I'm still grieving my doctor. He was like a father figure that was regulated emotionally and I miss my conversations with him and him telling my own father off. I'm using the weighted blanket he got me as a gift because he had ptsd from war and understood.
I'm crying about it right now too.
I wish my psychiatrist now wasn't so stoic.
I miss being told "we'd work it out, and that I'd be ok" he was really trying to help. He asked about me on his death bed. We were a lot alike. He told me as a patient because I was smart, "too smart" and "very self aware" and tried to help me figure out a safe way to avoid my father who he treated before, who would call his office to bitch about me and demand my meds get changed or would tell my doctor that I was schizophrenic. My dad is fixated on this diagnosis. He says I act psychotic but I wonder if he'd stop in his tracks if presented with a mirror. I'm not psychotic. I'm very dysregulated but lucky to be self aware enough to do what I can.
Basically my living situation is not good. My neighbors are um fucking terrible. My apartment sits upstairs around a big courtyard and pool. It amplifies noise big time for me. I hear the interstate and people talking and screaming and gunshots and children screaming which triggers my Katrina traumas and it's about to be hurricane season coming up and I can't deal. Also the balcony, how I get to my apartment...the beams are rotting and breaking and me and the quiet neighbor are concerned it's all gonna fall on one side and take out the rest.
This is the current picture of the beam but it's getting slowly worse and I'm like HELL NO
I need to bring some coffee to my old psychiatrist's grave. He got told to stop drinking it a year before he passed. I need to visit anyway and let some grief out.
I'm mad because I've gotten so frozen up I have trouble leaving my apartment unless I have a friend with me on the phone or in person.
I hate relying on ppl for support because I'm scared they will get tired of me just like everyone seems to eventually do.
Travis has been a good friend. I hope I'm not causing him trouble. I worry he still is extra nice even when he says he just wants to help.
I have trouble with accepting my partner loves me but he showed surprised me with beach pictures and a video of the waves and a family pet. If i was going by cbt id say that's a hell of a cognitive distortion but it's not completely invalid. If he didn't love me then this would be a horrible elaborate ruse which I often worry about. The man is a very private northerner. I forget about the stark difference in behavior and how freakedout he was when i explained wafflehouse waitresses vs northern diners.
Me and my partner had a really great conversation and I learned a lot about each other. He's really cute. I'm still giggling abt him being with his family and his whole family is busy with this event and he took pictures for me. He told ne about his first jobs. It was cute.
He's a better speaker than me but we still I think had a good conversation.
He told me to meet him at the red house and we both discovered we stalk at the same level. Like we both found the house on Google maps going of the name of the poster. Like I'm impressed. I didn't realize guys did this shit? Do they do this way more than i think? Ugh im disgustedly in love with him like some long distance quirky hipster movie ew. Idk I feel like I may be better at that because one of my hyperfixations is finding things because likely autistic urge to understand other people because you literally feel like you're just an alien (not literally) and idk whatever point is...this man and me got more in common than I ever thought like I can't even explain it's like one of those weird couple things, this is not the first occurrence of us going like OMG YOU DO THE STRANGE THING TOO? Because there's just no unique experiences apparently and no such thing and coincidences imo at this point.
Honestly why even do anything else about that right now. I got way the fuck more to work on. I've typed enough today anyway.
Ok I'm going to bed. I'll try not to go insane.
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I haven't read ACOSF yet, and tbh I'm rather rusty with the characters but it was really interesting to read your opinion on Elain! I feel there's a lot of complexity to her. And how she presents herself as well because as you said we literally have no chapters from hers or Lucien's POV and I think that's the important point to note because right now we're all just guessing and assuming her to be like Feyre, but she's not. People deal/show their traumas in different way and l think people expect Elain to deal with it as Feyre did. But, Feyres trauma and Elains are very different!
I don't really know what I'm saying. But I read your answer and it made me go 'oh... Huh!' in a good way, it sparked my curiosity! So thank you! But I think Elain perhaps is the most complex person with their trauma. I know people say 'oh Nesta is so different' but (I specialised in drama therapy so I love psycho analysis) and what Nesta did is self destructive to prevent relationships to avoid hurt or more emotions that she doesn't want to acknowledge (in my opinion!)
Elain just shuts down. She doesn't drink, she doesn't screw, she just remains in her garden which in itself says a lot! That's a very grounding way to handle trauma and not a lot of people are aware of that side!
So yeah I don't know what I'm saying but I think it's a really interesting discussion!
I have so many thoughts about Elain! This took me a few days to get to because i knew I had a crapton of thoughts. So this is basically me using this ask to explain the way I see Elain post-acosf!
There are three important scenes in acosf off the top of my head: when Elain talks with Nesta and they fight, and then with Nesta and Feyre and she gets mad and leaves, and then Feyre and Rhys talk about her in their chapter. We’re getting a lot more information about her, and for me, it wasn’t so much about who she is, but why we don’t know who she is.
So far, what we’ve had is Feyre’s and Nesta’s POV. Even when Feyre and Lucien tried to help her in acowar, they were unable. So we’ve never had anything about Elain from someone who didn’t grow up with her and experience the same trauma (such as becoming destitute, their mother’s death, their father being beaten, the Cauldron, etc.)
The sisters do handle it very, very differently. And I think that at this point the fandom consensus is that Elain runs away from her problems, but I actually disagree, and partly because of what you mentioned - that she isn’t using those self-harming, destructive coping mechanisms. Nesta was avoiding her problems, hardcore. It’s absolutely possible that Elain avoids things, but I don’t think that she just runs from all of her problems because:
Elain grieves her father. Openly. She tries to accept the fact that it wasn’t her fault and that she couldn’t do anything about it. (See: her going to his grave in acofas, her first talk with Nesta in acosf.) Elain does not run from her grief, she doesn’t pretend it doesn’t exist, and she doesn’t hide it from others. As one of the most defining events we’ve seen her go through in the series, that’s a pretty big deal.
Elain does not cling to unhealthy coping mechanisms. There could be ways that she does this that we are unaware of. She does seem like the type who would be really, really good at making people think she’s okay, all while she’s silently imploding. But we don’t know that yet?
Elain does not isolate herself.
However, Elain definitely needs to deal with some stuff! She definitely needs to deal with Lucien, and she needs to have an actual talk with Nesta because I don’t remember a single satisfying resolution between those two in acosf. Not like Nesta had with Feyre.
I have this idea that is purely based on Elain’s line in acosf:
“I went into the Cauldron, too, you know. And it captured me. And yet somehow, all you think of is what my trauma did to you.” (pg. 233)
And then Feyre tells Nesta that yes, Elain was right.
This is so so so sossosososos important. I cannot emphasize it enough. Elain is used to putting on a fake, smiling face because she doesn’t want the weight of her sisters’ concern. She has been pretending to cope for so long - and tbf, she seems to have been doing better than Nesta - that people not only forget that she has suffered, but she doesn’t feel like she can even express that suffering.
Emotional labor often means negating one’s own feelings in order to acknowledge or tend to someone else’s. And that is Elain’s major role, in the series. Feyre has been caring for everyone’s physical wellbeing (hunting), while Elain’s role has been to care for everyone’s emotional wellbeing. But, like with most emotional labor, it has gone unnoticed.
I’ve made posts about emotional labor in the past (four years ago!!!!) but I’m gonna spare you the link because a lot of it was about a ship that’s no longer a ship, so here is the relevant content:
What I am talking about is the regulation of emotion - any time that you give comfort, are especially attentive to someone’s needs, stop thinking about how you feel in order to focus on how someone else feels, try to cheer someone up, make sure that they are taking care of themselves, try to allay their insecurities, etc. Basically, helping them with any sort of emotional distress.
You know those posts you’ve seen, about women protecting men’s egos constantly? Or about making time for self-care? Or about recognizing toxic relationships? That tell you “if X is being demanded of you in a relationship, get out”? Those are ALL about emotional labor, broadly speaking. They are warning you not to do more than you can handle, more than you need to do, because it can be harmful to you.
If you have ever been expected to make a person or people feel better any time you are around each other (including when they are angry, upset, anxious, ill, frustrated, insecure, etc.), you have performed emotional labor. Pretty much everyone has done this at some point, unless you are a completely insensitive jerk.
Notice, though, that I said expected to and any time you are around them – this is where the problem comes in for YOU. This is not about just being there for a friend.
Making loved ones feel better is fantastic. Seeing people be polite and kind to one another makes my heart shine. That is not a problem in and of itself. That can be seen as emotional labor, but there are no requirements on you in those circumstances. This is something you are doing of your own free will.
The problem, again, is when this is expected, constantly, over time. Now, in my experience, the expectation is not necessarily coming from the other person. One of the problems with this type of labor is that not only do others expect women to perform these tasks, but women expect it of themselves.
It’s super easy to see this – who is expected to take care of a child when they fall? Who is expected to baby-sit? Who did you want when you were sick as a child, mom or dad? Who is expected to be sensitive and pay attention to others’ emotions?
For more info on this idea specifically, read Of Woman Born by Adrienne Rich. As a woman, I realized how much work I had been performing and how much it was harming me and I just… got real upset. She comes at this mostly from what a woman’s role is expected to be within the family, and might actually be a bit outdated in that respect because I feel like family structures and dynamics are shifting (that is a totally un-academic evaluation of the situation, don’t quote me on that), but still, it’s really informative.
While I was doing some research for this post I came across a peer-reviewed article about nursing and basically, high amounts of emotional labor led to anxiety and burn-out in those performing it. It literally will cost your mental health – not to mention your time, energy, attention, and it often requires you to ignore your own needs (this last part came from me, not the article). On the other hand, high levels of emotional intelligence (being able to recognize your own and others’ emotional states) meant less emotional labor (and therefore less anxiety & burn-out). One of the most important things to realize is that while you are taking care of someone else’s emotional needs, your own are frequently unmet. That is why it’s important to recognize this in yourself, not just in these characters.
So where does Elain fit in? Elain is the #1 emotional labor provider of the family, and she is about to freaking SNAP. I know, because once I realized how my trauma was hidden in order to spare someone else its consequences, I fucking SNAPPEd. I’ll also spare you the personal details, but Elain hasn’t been “okay”. She hasn’t been “boring”, or “nice”, or “chosen” Feyre over Nesta. She has literally been unable to express herself because (and I am NOT blaming Nesta or Feyre or her father one bit) her family’s emotional state has been so fragile, there hasn’t been room for Elain to feel or express her emotions in years.
In the feysand short, Rhys says:
I wonder if everyone has spent so long assuming Elain is sweet and innocent that she felt she had to be that way or else she’d disappoint you all.
And that completely tracks. Everyone has gotten used to Elain being not just “nice”, but being the emotionally predictable one. The one they know they can go to for a smile. The one they can count on for never, ever making them realize that she has been through Some Shit Too. And being that person is exhausting.
When Feyre thinks about Elain not using Lucien’s gloves, 1) she still has them, otherwise she couldn’t think about Elain not using them, and 2) I like to see the gloves as something that she will come to use, once she realizes that she can feel and express those emotions without it causing a breakdown in the family. Right now, she just wants to feel. And she can’t do that emotionally, so she’s doing it physically. Once she heals and finds a better balance, she won’t need to resort to physical pain. (Which, lowkey has me thinking some other thoughts, but.... maybe later.) But anyway, once Elain does go through her very own special journey, I fully expect her to welcome those gloves. She won’t need physical pain to feel anymore.
Not to mention my completely unacademic and non-professional opinion that people will judge a nice women harshly for being rude once, but accept a woman with a history of rudeness for just “being that way”. It’s another way that Elain may feel trapped in her “nice girl” persona. I think she started out that way - kindness and light and generosity is 100% in Elain’s character in the first place. It’s not as if she went into the Court of Nightmares and suddenly Cassian thought, “wait, she fits right in to this shithole of depravity”. No, he still thought the literal opposite. It’s just that once people get used to you doing all their emotional labor, they will continue to take advantage of it, even if they don’t realize its cost.
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Perkatory- mental health
my own thoughts:
i didnt think it would happen to me. cancer is something that happens to other people. to my patients that i would encounter. to other people's parents. in kdramas and greys anatomy. cancer was just another disease to learn about in lecture and memorize sxs and
i have always been a mind over matter person. i could push through any discomfort. pain was temporary. grit was admirable. pushing forward when it got tough was something to strive for. to quit is to be weak minded and that was not an option for me. i worked hard and kept working hard until i succeeded. i would not feel proud of myself if i fell short. my ego would shatter if i gave up.
my body couldn't keep up with my mentality.
and even after treatment it still cant.
im tired. i sleep in all the time. i can socialize but im so tired afterward. i cant run a mile at the same pace or distance as before. i ran a half marathon just 4 months before my diagnosis. i was so healthy. i still cant believe this is happening to me.
"the pain of cancer lasts forever" said the moderator. i literally fucking hope not. i would be so pissed if that's true. that will not be me.
what is harder? concurrent high dose IV hospitalized chemo and radiation for 5mo or oral chemo for 3 years.
disservice to myself to tough it out. to think that i am tougher than everyone else. i am not. don't be so vain.
i did not get to choose my path. cancer chose for me. emotionally coasting thru treatment. detached from my life. living my best life > no solid ground to stand on. how to proceed? finishing treatment was the most challenging day. fear. anxiety. unpredictable. who am i now. trying to feel excited. performative for the fam and clinical team who was more excited than i was.
thoughts about the speakers:
Jordan Adams- basic. boring voice. tolkien reference. classic cancer "appreciate the people you love" story. people are like wow, write a book. beautiful way with words. so in touch with your emotions. i would not read it.
Elisabeth Dodd- dad died from cancer when she was in college. depression. acts of care from friends and fam. really perky.
Charles Razook- needing help is shitty. asking for help feels worse. societal expectations. vulnerability. disservice to tough it out. i am tougher than everyone else. i am not. don't be so vain.
Jessica Guerrero- nurse. cancer pt. i did not get to choose my path. cancer chose for me. emotionally coasting. detached from my life. living my best life > no solid ground to stand on. how to proceed? finishing treatment was the most challenging day. fear. anxiety. unpredictable. who am i now. she went to cancer camp. this is your life, health and wellness coaching. interactive workshops. life is precious. no guaranties. enjoy the small stuff. blah blah (www.thisisyourlife.live) (this is your life -the killers)
Cynthia Hayes- older. nice speaking voice. showing emotion is a sign of weakness. emotionally volatile. dx was a relief. now there is a game plan. waiting is the worst. shared emotional turmoil. patterns in the cancer pt experience. what we feel, why, what to do about it. cancer emotions are expected. i am the only one who is so weak and pathetic. emotional recovery only after physical recovery is complete. compartmentalizing. doing stuff to change body chemistry. denial. emotional and physical intimacy is messed up. (the big ordeal - book) (https://thebigordeal.com/) the right way to cope with cancer is the one that works for you. protective armor. there is no plan for survivorship the way there is a plan for treatment. go off the deep end when you are done. not sharing to sometimes portect them and sometimes to protect myself. what works one day might not help the next day. try different things. forest bathing > regulate body and brain chemistry.
Melanie Kent- i read her article in elephants and tea already. her voice is childlike. nah to the aya community. i needed denial at the beginning. i needed distance. i needed people to see me as not a cancer pt but just as me.
Asha Miller- i think she is the one that writes the articles i like on elephants and tea? maybe not. great speaker. v captivating story telling. dx > left my body. slowly coming back to it. (https://elephantsandtea.com/survivorship/theres-a-safe-space-for-you-here/) cancer veteran. i was wrecked yall. i crashed and i learned. started out treatment strong. eyes opened to the reality of what was happening and what will happen. i broke. screaming at myself to get it all out. broke the dam that was building for month. weeping. we are still here against all odds.
Hailey Johnston- lgbtq cancer (https://elephantsandtea.com/survivorship/theres-a-safe-space-for-you-here/)
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