#brief life update i am struggling a lil bit | Explore Tumblr Posts and Blogs

dear--charlie · 3 years

Text

Dear Charlie,

July 14th 2021

It's been a while. A lot has changed. A lot has happened. A lot of thoughts.

I'll give a brief update. Kicked out roommate for cheating us out of money, moved to a cheaper apartment, got two raises, have three cats, got rid of the puppy (the generous girlfriend couldn't keep him after they broke up), one partner got breast reduction surgery (had several health issues that revolve around the weight), quarantines are up and I'm still so busy that I don't have energy to get the vaccine. I'm still bottling up emotions, and it's becoming easier to switch on and off certain ones haha. I've even started itching and scratching when I'm anxious or stressed!

Um. Oh! My parents split up- for a bit. My dad was cheating on my mom with two different women, one left him and he's still with the other one I think. Which… I want to say I was surprised when my mom told me, but I had found out when I still lived with them. I didn't want to believe it when I did so I didn't say anything. I thought I processed it, but I'm still not sure how to feel. Numb about the situation. But I'm an adult who has her own life, I shouldn't be caught up in my parents life, right? Oh who am I kidding, I'm practically my mom's listening buddy. She tells me things and vents and gets advice from me. And dad… I barely hear from him anymore. Don't know if it's because of his night shift job or because he's ashamed. My partners were pissed at him for obvious reasons, but brushed it off when I told them it was actually happening. I want to say that it didn't bother me.

What else… I found out something from my childhood that makes me want to do nothing more than cut my older sister from my life. Makes me question my whole life. Makes me… realize that one regret could have prevented so much from happening to me and my lil brother. He basically is dealing with imposter syndrome from this. When I was told I honestly didn't know how to react other than stay calm. Now that it's been several months since I'm not coping well. I can't talk about it anymore to my partners as it made them even more pissed and not listen to how this is making me feel.

I guess that's a running theme, not listening to me. It's fine. They both have other things to deal with. They also have repressed emotions that are budding out. Bigger things to worry about. My emotions need to be set aside to build them up.

Speaking of things to worry about, it has now been almost two months without a working car or without another income. I've been making the situation worse by fretting about money and talking about my budget plan- or I feel like I have because both partners are thinking of outrageous things to do to make money or keep apologizing. I've been able to support us so far. I'm worried and I don't know how to be less outward about that.

I'm rambling. I can't keep a straight thought when writing to you Charlie. There is so much to say and explain. I don't talk to people outside of my home or work anymore. It's hard when I don't want them to be biased towards me or to just sound like I'm only talking to vent and not be friendly. It's hard to bond over things with others because I've lost interest in most everything. Charlie, I don't want pity. I don't want to be "woe is me". But I want advice. I need some comfort with these intrusive thoughts. I swear I have good days where everyone is good. I'm just struggling right now.

Signed,

Xeana

#dear charlie #Xeana

3 notes · View notes

whyhellomynameismary · 5 years

Text

Where I’m at: progress update

You’ve probably noticed I’ve been… fairly inactive. Haven’t posted any new videos, haven’t done too much other than occasionally shitpost with anons.

I promise you, I haven’t abandoned this series. Other things have been going on. A lil’ bit of whining ahead, so I’m putting this in a read more. A bit of a content warning: depressy stuff, brief weight talk

Since I moved back home in august, I’ve been seriously struggling with motivation with basically everything in my life. I have a job, so there’s that, and I’ve been doing an online course as well, but I’m struggling with even that. I can’t seem to bring myself to DO anything, and I’m so frustrated. I’m supposed to love animating, and I’m supposed to love making this series, but I just can’t focus on/motivate myself to do anything and it sucks major ass. I’ve been neglecting cleaning my room, taking care of my body, working on the hobbies I care so much about, and basically most things. I’m losing weight without trying and breaking out like crazy. It took a damn intervention from my parents to clean things.

Since moving back home, I’ve also been pretty much isolated from ALL of my friends and close relationships, other than online. One of my best and longest friends is spending a year working in France, and everyone else is either back at my college or somewhere far out of state (2/3 hr drives for most of them). Not to mention, my boyfriend is far away too, and just made a big move far away for a job, so we’re gonna be long-distance for a good while until a make enough money/have a job out there to join him. We’re very committed to each other so I know we’ll be just fine doing long distance, I’m not worried, but it sucks not being near him physically. I’m a ghost in my own house. I leave for work, eat dinner with parents, and retreat back up to my room to “work” aka plan on working and get nothing productive done.

My job is proving to be far more boring and sitting at my desk with no work to do than it was made out to be, and I swear it makes my brain hurt. I’m thankful that I HAVE a job, but I can tell from multiple factors that it won’t be a forever job. The insurance it gave me isn’t great, so I keep hesitating to even make a doctor’s appointment let alone a therapist.

I’ll be honest when I say that a lot of hiimmarymary is written unfortunately from experience. Both mary and I are a little stuck right now. I’m plodding along with editing, but very slowly. I’m trying desperately to summon that love I had, and excitement for editing and finishing this story, but it’s kicking my ass a lil. Not to mention, I keep tearing everything I’ve already shot to shreds. I think I want to reshoot one sequence in particular, because I’ve come to HATE it. Everything is wrong and nothing like how I envisioned it, so I’m just going to do it again. I should mention this sequence has already been reshot once. I want it to be perfect. I’m going to fucking finish mary’s story no matter what.

I feel like, by holding myself accountable and being honest with you all, it might help actually to motivate me. Maybe, by acknowledging hey, this does kinda suck, and now people know that I’m trying but not neglecting it deliberately, than I will feel more comfortable just sitting down and opening up my editing suite. I don’t know. But I feel like, since you guys have stuck with me so long, I owe you at least a bit of an explanation. And a sincere thank you, for dealing with the hiatuses.

Here’s what I can promise. There’s two videos left. I am working on them simultaneously. When they are complete, I will publicly announce when to expect them. HOW I will announce it is yet to be determined. What I’ll say is that when one drops, the other will follow within the week. I have a date set in my brain, but I don’t know if I’ll make it so I’m not going to announce anything yet. But I will try to stay as transparent as possible. I might even try to do some sneak peaks if I can. There’s a reason when I first started this series I said never to expect consistency from me, in the event this kind of crap happens. But I WILL finish it. For SURE.

Thank you. Seriously.

-k.

52 notes · View notes

iamsashagay · 5 years

Text

RP Month 2019!

Those of you who have had the (mis)fortune of following me on social media for a while, you know February is Retinitis Pigmentosa Awareness Month. Which means I get to write a bunch about myself and my life and nobody can judge me too hard about it! Yay! I thought this year I’d try to be a bit more #enlightened and talk about language surrounding visual impairment and the ableism that is so persistent in our lives. (For reference, I’ve already written a bunch about my diagnosis and what dealing with it has been like). If you don’t want to read a whole lot of words, here’s a brief summary and some updates.

- I was diagnosed with retinitis pigmentosa in the fall of 2015 with an approximately 60 degree field of vision (180 degrees is ‘normal’

- I was told I would likely be legally blind by 40, if not by 35

- I was referred to the CNIB and started accessing their services (such as orientation and mobility training, getting a CNIB bus pass) in the spring/summer of 2016

- In 2017, my peripheral vision continued to erode and I lost roughly 1/3rd of my visual acuity in my right eye

- As of my most recent eye appointment, my field of vision has degraded to about 25-30 degrees (combined). I have no peripheral vision at all at this point. - Based on the rate of my vision loss since my diagnosis, I’ll probably be legally blind far before my doctors’ initial estimation (legally blind is defined as an individual having a 20 degree or less field of vision)

- I went back to school (yay me!) last month and I’ve been *pretty* good about using my white cane to get around and forcing myself to get more comfortable with my reality as a ~blind~ person

And that’s what you missed! I’m also gonna sprinkle in some of my favorite RP Truth memes because they’re wonderful and make me feel seen (no pun intended). So having lived in this shit for the past few years and having to…let people know what’s going on, I’ve heard a lot said about my vision loss from (often) well-meaning people. Probably my biggest pet peeve re: vision loss talk is the initial conversation I have with people when they either find out about my condition or when they feel comfortable asking me about my blindness. Inevitably, the first question people leap to is “is there a treatment? Is there a cure?!”It’s an innocent enough set of questions, and I truly believe there’s good intent behind asking them.

The issue I have is that, with my condition, there…isn’t. There is no viable course of treatment, nor is there anything resembling a real-world cure. Which inevitably leads to “well they’re doing great things with rats and genetics and science is wonderful I know they’ll have a cure for you soon!” Which, again, is meant to sound supportive, encouraging, and positive. It’s what people have trained themselves to say when they’re confronted with something like blindness.

Think about this conversation for a moment. It is inherently ableist. The entire sequence (and it’s a very predictable one once you’ve sat through it a few dozen times at minimum) suggests that the only response to losing one’s vision is to immediately *fix* the problem. It tells people like me that we’re broken. That we need to be solved. It tells me that a reality where I just *accept* my genetic coding isn’t a viable one. That the thought of existing while blind is so disturbing that it should be completely leapt over to fixing the problem so that scenario never happens. Sure, it’s not intentional. That doesn’t change the meaning behind those words, well-intentioned as they tend to be. The words are ableist because they imply that I could not be productive, or valuable, or happy the way I am. They say that I must want to change a fundamental part of my existence. Why? Why is the default not to ask

- How are you handling this?

- How can I make this easier?

- What are your plans for the future?

- Do you have the support you need?

- Can I make this space more accessible for you?

Those questions don’t spring into people’s minds because our society has so deeply ingrained ableism into our vocabulary that we act on the presumption that it is the disabled individual’s existence that needs to be altered, and not the environment that sets them up on an unequal playing field.

Telling me that I should hold out hope for a cure that may never come, or may never be accessible to me, is akin to telling me that I should just lay down and let the world do her thing and passively accept whatever comes. I understand fully that when people have this conversation with me they aren’t *actually* trying to make that statement. Five years ago, those are the questions I would ask. I struggled for a really long time (fuck, I still struggle) to just accept my reality- to accept that this was simply something I was going to live with and that I needed to work within the circumstances I had been given. That, however, does not absolve people from the responsibility to look at why they are so uncomfortable with the thought of someone not being wholly invested in being “cured” or why I might not be interested in investing my energy into hoping and dreaming for science to bring back my vision.

Why do we think a life with vision loss is such a devastating notion? Why is my lack of peripheral vision such a scary thing people to think about? When we skip over these questions, we skip over what really matters: that the society we inhabit is not designed for people with disabilities. We focus all our energy into fixing disabilities because we’d rather ignore how poorly individuals with disabilities are treated and how inaccessible we have made the world for them.

I’m not able to speak for people who have other disabilities than mine, or even those who have different forms of vision loss than me, but I encourage you to seek out their work if you’re so inclined. We all experience our environments differently, but I think it’s safe to say the consensus is that living with a disability isn’t necessarily the problem – the problem is how we are expected to behave with our disabilities. We are expected to return to an “able” state as quickly and inspirationally as possible, or to step back and become passive members of society so as to not trouble the abled people around us.

Existing as someone who is blind is not revolutionary. I am not revolutionary for returning to school for a career that is more in line with the abilities I have now and will have in the future. I am not revolutionary for navigating downtown streets with a white cane. I am not revolutionary for holding down a job – and being *good* at that job (although given 80% of people who are legally blind are unemployed…it’s easy to see why that’s an assumption). I am not revolutionary for getting coffee from Tim Horton’s in the morning. I am not a token for you to look at and say “and we think we have problems” while gesturing to your coworkers. That’s some next-level ableist bullshit. All I wanted was a double double that morning, and that lady at the counter thought it was acceptable for her to treat me as an example of how cruel life could be. She dehumanized me. Fuck that shit.

I’m going to go a little bit off on a side tangent here; feel free to skip down a lil’ if you’d rather not read this rant. In addition to the above, you know what else is not revolutionary? My love life. It is not revolutionary that I have a partner who loves me. It is not revolutionary that Joey deems me worthy of his time, or his respect, or his love. He does not get an award for being audacious enough to be in a relationship with someone who is disabled. He does not get to be the ‘better’ partner in our relationship because he is willing to somehow be chained to my crippled existence. We joke about it, because humor is how I cope with a lot of things, but at the end of the day, he is not *brave* for “seeing past” my blindness. So when you see us looking cute on the gram or him by my side at the mall when I’ve got my cane out – don’t chalk him up to being a wonderful supportive partner because he is willing to accept my disability. Joey is a wonderful and supportive partner because he gives me space to explore who I want to be. He is a wonderful and supportive partner because he is without fail by my side even when I do a shitty job of prioritizing him. Joey is a wonderful and supportive person because he wants me to be independent. His love has been unconditional for over seven and a half years, and my diagnosis did not change his love for me. Do not disrespect his loyalty and love for me by suggesting he is the best example of what a man can be because he doesn’t treat me differently for my blindness. That’s the goddamn minimum. That is the lowest bar to meet. I am fucking worthy of love with or without my vision, with or without my hearing. My value is not tied to how able-bodied I may or may not be.

My abiity to pretend to be able bodied is not something to applaud me for. I am very good at pretending to see more than I often can – to the point where I’ve had people who’ve never seen me use my cane be shocked when they find out how little vision I have left.

I am not revolutionary for giving back to my community through my volunteer work. Blind people are not heroes for doing the same things you and the able-bodied people around you do.

Do you know why inspiration porn exists? It’s because our world expects disabled people to fail. It’s because deep down, you know how little thought is given to making accessibility the default. You know that disabled people have to work harder and do more to be “normal” just because of the way things are. That’s why you ask me when I’ll be cured.

The idea of someone being visually impaired and not having an escape plan from that reality is deeply uncomfortable, because it means confronting how basic things are designed to be exclusionary.

It means realizing how shitty this city is to navigate as a pedestrian. It means noticing that we’re okay with people placing any and all manner of obstacles in the middle of sidewalks, from signs, to bowls of water, to clothing racks. It means recognizing how little people give a fuck about others. Just today as I was making my way downtown (walking fast, faces past) on the subway, a man with a seeing eye dog got on the train. Who do you think was the only person on the entire train who thought to give him their seat? It was me and my white cane who gave up their seat – while the lady next to me bent over in her fucking seat to pet the man’s SERVICE DOG. I was livid.

We pretend to be doing our part to be ‘inclusive’ and ‘improving accessibility’ while avoiding doing the actual work. The TTC for example, gives the CNIB transit passes to distribute to their clients so they can access public transit for free. I’d love to applaud them for that. I cannot, however, because they apparently forgot to train their employees on how to deal with visually impaired people who use the cards. It is *not*, as occurred the other week, to berate riders about not “showing the card properly” or “not waiting for an empty bus” and then getting on the intercom to lecture said rider about how “if they were smart enough to be going to school they should be smart enough to ride the bus” in front of sixty people. That is no accessible. It is not accessible when I complain both publicly and privately to the TTC about said incident and their initial response is not to be outraged that the incident took place, but rather to let me know their vehicle operators are “trained in how to accept fares”. (It’s been over two weeks since I submitted an official complaint. I’ll let you guess if I was graced with any formof a response other than a “we received your complaint” form email). The TTC is ableist. The TTC is a problem.

The problem is not my vision. The system is designed to burn us out so we don’t scream about the injustice of how we treat people whose DNA skipped a few lines. It’s exhausting trying to keep up with people who don’t have to give a second thought to where curbs are, or which seat on the subway is the easiest to get off from, or remember which set of stairs has the awkward landing on it, or how to hold a cane and a backpack and a phone at the same time. I’m okay with that though, because I’m learning to adapt. I’m unlearning a lifetime of ableist thinking. I’m proving my worth to myself. I’m doing good.

Just please stop asking me about a cure. I don’t have the time, because I’m busy trying to get my coffee (probably).

#retinitis pigmentosa #RP #blind #blindness #retinitis pigmentosa awareness month #ableism #rp truths

3 notes · View notes

rimofwell · 7 years

Note

hi, you haven't posted in a bit and since things seem to have been a little rough lately from your last posts. how are you doing? how was your day? remember to pet a lil animal if you're feeling down :)

hi, there! i appreciate you sending a message checking in! it’s always heartwarming to know people still keep up with my blog from time to time, despite the inconsistency with which i post on it ha

i’m going to put this under a cut because what started out as a brief synopsis turned into a long personal update (what’s new lol)

yes, things have been all over the place this summer. i was struggling a bit being home in may; then i went back to my college to do research for the majority of the summer, which was a good reprieve; and then i went back home for the month of august. for a while some of the obsessive tendencies i used to have came back in a more extreme manner than they have in a while, but i think a lot of that was due to being home and the chaos there, so once that settled down the behaviors followed suit. altogether, it was just a lot of shifting back and forth for me, and toward the end of the summer i still felt like i was in this frenzy of thoughts/feelings/mental spaces. consequently, i left for school in a weird headspace. looking back on the summer, i definitely could have used a few more weeks or months of therapy (my sessions are usually a bit inconsistent when i’m back at school due to a variety of things). but it is what it is, and i’m glad that i had the research experience i did. toward the end of the summer i talked a lot about feeling like i was constantly trying to catch up with life, and that it would be ideal to just take a bit of a reprieve from it all in order to be at a calmer/better place mentally. realistically, however, i don’t foresee that happening anytime soon and i’m trying to be okay with that. letting go of some of the perfectionism i have, as well as the belief that everyone has it more together than i do has been hard. but i think i’ll get there (hopefully).

i still do feel like i’m in the same weird headspace i was in. but i’m trying my best to compartmentalize things and focus on the tasks at hand. usually, once school picks up this isn’t a problem at all for me, and the ease with which i compartmentalize can actually be an issue.

i started dating someone back in february (though i’d only consider us ‘seriously dating’ since may) and that has brought up a shit load of emotions and memories of the sexual traumas i buried pretty deeply. that has all definitely been unpleasant, and quite frightening honestly. i made a very blunt/honest post about an experience i had (which i subsequently took down) and if that is what you’re referring to with my posts being a little rough, just know that i did talk about it and i am working on what to do when flashbacks come that intensely. it’s both a blessing and a curse that things have paned out the way that they have. i truly love the person that i am with. he really is the kind, persistent, patient, and stubbornly loving presence i didn’t know that i needed. this is in a lot of ways hard to accept because it forces me to question the belief i hold that i am fundamentally unlovable. it’s also forced me to be vulnerable, and open — two of my least favorite things. this has undoubtedly contributed very much to the chaos, and breakdowns/mixed emotions i had during the summer. but i know that all of these experiences/emotions have existed underneath the surface regardless, and having a person to be intimate with both physically and emotionally has opened the lid that i’ve kept tightly capped for a very long time. this has been quite a challenge, but i think it’s one i’ll hopefully grow from

in terms of academics, i am incredibly wary for this upcoming semester. i’m taking genetics, organic chemistry, honors research for credit in biology (which is essentially the exact same thing as regular research for credit lol), and intermediate spanish 3. genetics, and obviously organic chemistry are known to be the two hardest classes i’ll take for my major so i’m nervous about how i’ll do in them, but i’m trying my best to remain calm and not get overwhelmed. i realize also that i hate studying on a daily basis but i know that that’s what’s ‘highly recommended’ for both of these classes so i’m trying to suck it up lol

this fall is when i’ll start applying for summer research experiences, and preparing presentations for conferences which makes me both nervous and excited. truly, i can’t believe that i’m a junior and i feel both unprepared and thrilled to be leaving college so soon

i don’t know—things are (of course) all over the place, in a way that’s different than they’ve been before, but i’m trying to keep everything in perspective and not react as impulsively as i sometimes want to to spurts of intense feeling and fears of losing control etc. also trying to not drive myself crazy with school work! and not pull away in the relationship i’m in so we shall see!

anyway, thank you for your kindness. i hope you are doing well too!

4 notes · View notes