not the best news

i’m not super-stoked to talk about this, but here goes: i got the results of my disability review back the other day. they claim that my condition has improved, i am able to work (specifically, they say i can “walk, lift, stand, & learn new things” & therefore can find gainful employment; apparently the fact that i actually can’t walk, lift, or stand without significant & debilitating pain doesn’t matter? but anyway), & my benefits will be discontinued in august.

this isn’t what i expected & i am pretty shocked. i plan to appeal, even though the idea of wading through that sea of red tape makes me feel…well, panicky isn’t even the word. about one thousand steps beyond that.

i really don’t know what happened. & i’m reluctant to speculate too much. i could be mistaken, but what i gleaned from the letter is that i was primarily approved in the first place due to mental health issues, & since i stopped taking any kind of psych meds, they decided those issues have improved. even though i told the social security doctor that things haven’t been going so well on that front recently & that i planned to track down a psychiatrist & try an anti-depressant again. he asked if i was experiencing any suicidal ideation & i said, “not right this second, but within the last week, yes.” he specified, “but not right now?” & i said, “no, not right this very moment as i sit here.” apparently i would have had to slash my wrists right there in the office to be listened to? but again, this is just speculation. i haven’t seen his report yet & don’t know exactly what he noted.

i did end up going to the ER a few days ago to expedite the process of getting some legitimate help with this depressive episode. it’s been lingering for months now & it’s become a lot worse in the last few weeks. i tried to talk to my current therapist about suicidal thoughts, but she deflected it & told me i was “doing great” & that it’s “been a long time since [my] depression has flared up”. i said, “what about right that this second?” & she insisted, “you’re doing fine!” so…i think that’s that. i always knew she wasn’t great with big stuff, but this is a few steps too far. i’m going to interview new therapists this week, i hope.

so yeah. quite a bit of not-so-great stuff happening here. when i think about it, i get upset with myself for how long i’ve been sitting here keeping a cap on how depressed i’ve been feeling. i didn’t even talk to jared about it until a week or two ago (though he confessed he could tell that something was going on–i guess my occasional bouts of sudden, uncontrollable crying did not go unnoticed). a few years ago, i was a lot more open about this stuff. i was kind of crusader, i guess. & i got so much offensive push-back from people, people saying things like, “well, then you must be crazy,” “if that’s how you feel, it’s probably not right for you to have a boyfriend/have a child/mix in general with normal society,” etc etc, that i just started keeping it to myself. years of therapy have outfitted me with a lot of useful coping mechanisms, but i’ve also learned not so great ones, like compartmentalizing, & using humor as a defense mechanism to the point that people think, “she’s cracking jokes, she must be perfectly all right.” even at the ER, i was making jokes. when i wasn’t crying or staring at the wall. i’ve just had so many bad experiences where i was honest with people about what was going on & they were like, “oh. OH. i thought you were all right. i’m just gonna back away & try to disappear from your life now…”. it’s a big challenge to be going through a rough patch, to bring someone into your confidence about it, & then to rebuild a rapport once you’re feeling better.

on a practical note, my disability status being up in the air like this means our financial situation is tenuous. i can choose to continue receiving benefits until the appeals process is over (& if i lose, i would likely have to pay those benefits back). i crunched the numbers & there’s just no way we can get by on jared’s TA salary. & i literally cannot work. i can’t be on my feet for longer than half an hour at a stretch, i can’t lift or carry heavy things, i can’t sit at a computer all day…one of my friends suggested that i try to turn my sewing into a home business, since i “have a lot of free time” (suffice to say this friend does not have a baby), but as much as i love to sew, i am not physically capable of doing enough of it to make a business of it. i’m still recovering from making my swim bag last week. it’s physically hard to sit at my sewing machine for that long.

plus, sewing can be kind of expensive. if i lose my case on appeal…well, i still won’t be able to work. we’ll probably have to take out loans to get through jared’s last year of school. we’ll be living even closer to the bone than we do already (& we already live quite frugally–ramona is 18 months old & we’ve spent less than $100 on clothes for her, including shoes, coats, etc, in her entire life), & i’m not going to have the extra money to buy new fabric, thread, etc.

i feel bad that this entire post seems like a litany of complaints. very personal ones, at that. but this is what’s going on. i’m just going to leave this here & hopefully not talk about it again until things are resolved one way or another. i don’t know how long that will take.

Published by Ciara

Ciara Xyerra wrote zines for the better part of two decades. She has a brilliant & adorable preschooler named Ramona & sews as much as she possibly can. She lives in Lawrence, Kansas with her boyfriend. She enjoys catching up on "The New Yorker", meatball subs, keeping it cranky, intersectional post-third wave feminism, dinosaurs, & monsters. If you have nothing nice to say, she recommends that you come sit here by her, so you can say not-nice things together.

13 thoughts on “not the best news

  1. Oh no! That so totally blows. I really really really hope you win on appeal.

    I know you don’t have time to sell big stuff like skirts or dresses on Etsy, but could you supplement your income a little with smaller stuff like sun bonnets? Something that doesn’t take a lot of time or raw materials, but relies on the fact that you have more sewing skills on the average bear. I feel like Etsy is full of stuff that people just whipped up in the hopes of cashing in (just do a search for tulle tutu and you’ll see what I mean), but I’m sure there is stuff that people want to buy that isn’t totally over-saturated.

    I feel bad that we haven’t had more hand-me-downs for you. My kid just decided to stay tiny. She’s almost 2 and can still fit into some 12-month stuff. When we move up to the next size, I’ll see if there is anything we have doubles of (I get hand-me-downs from two different people, so there is sometimes overlap). I really should have sent you guys one of her coats last year.

    1. well, even making a bonnet takes a good couple of hours. if i wanted to pay myself for both materials & time, we’re talking about maybe a $30 bonnet. i know people pay that much for, like, urban baby bonnets, but…it seems like a lot of time & money to sink into a project that may not pay off at all. i’m also still tinkering with the sizing. so i’d probably have a lot of grumpy customers complaining that their bonnets were way too big for their babies. (i tend to err on the large side.)

      if there was some way i could make a living off sewing, i’d do it in a heartbeat. especially because i’d love to attend quilt market, which is a trade show not open to the general public. that would be motivation enough right there! but it’s just not terribly realistic. it would maybe be a way to earn some “pin money,” but not enough to pay my share of the household expenses.

      no worries about hand-me-downs. ramona currently has more clothes than she needs. it’s really not difficult to find perfectly cute kid stuff at clothing swaps, thrift stores, or discount shops. we don’t make any effort to dress ramona in, like, matching shirts & pants or all-organic cotton or anything, so we’re doing fine. even though she is giant. i thought for a while that maybe we could get some hand-me-downs from the other moms in our playgroup, because all those kids are at least a couple of months older than ramona (gestationally, anyway). but she’s one of the biggest kids in the group. so we just buy her pants that are slightly too big & she wears them until they turn into bermuda shorts. she’s the only baby i know who has actually worn holes in the knees of her pants from crawling on them for so long.

  2. I’m still thinking about you! I hope things improve and I’m really glad to hear that you’re going to look for a new therapist. Seriously, that is not an appropriate response to someone who going through what you are describing. She really dropped the ball.

    I’m keeping my fingers crossed that you’re benefits will be reinstated. Given what you have described, that is clearly the right thing and hopefully the bureaucrats who decide these issues will see it that way. I like to think that people who work on benefits programs do so because they believe they are important and want to help people. Hopefully they make the right decision in your case.

    I saw that comment about you starting a sewing business, and I thought it was totally unrealistic. I mentioned about knitting for money once before, and it’s just not really a feasible business even for someone who doesn’t have chronic pain! But I was thinking that with your excellent writing skills, you could do some proof reading, technical writing, English tutoring, etc. My husband does that for a living, and I did it part-time for awhile. It’s something you can do from home. Anyway, email me if you have any questions about it. Hopefully it won’t come to that because it does require spending a fair amount of time at the computer & sitting. I also — and this is maybe way out of left field — think that you would make a good accountant. You’re good at budgets, you seem attentive to details, and I bet you can keep good records.

    But first things first, take care of yourself and put your mental health first. If there’s anything I can do to help you, please let me know. (And if you want some comforting knitted stuff, I can knit Ramona a winter sweater — my treat!)

    1. the thing is, if i felt like any of those ideas were real options for me, i would pursue them. i would have pursued them at some point in the last 14 years. as far as education goes, i only have a GED & a year & a half of college under my belt. very few places are going to want to hire even a part-time freelance copy editor with no formal education, regardless of how good her grammar is. from a practical standpoint, i have never pursued any kind of freelance part-time work (& you are allowed to work, even on disability; there’s an income cap for keeping your benefits, but it’s entirely possible) is because i don’t think i am capable of it, both from an anxiety/depression standpoint, & from a physical-toll-of-sitting-in-front-of-a-computer standpoint. i have often thought i would be good at accounting for the same reasons you mentioned, but again: education. accountants have degrees. i lived in boston, i could have taken classes at harvard extension or somewhere & polished off my bachelor’s, but i didn’t. not because i’m lazy or a quitter, but because of depression & panic attacks.

      in the event that i am denied at all levels of the appeals process & kicked off disability once & for all, i honestly do not know what i will do. i have jared & the hope is that he’ll be able to find employment that will take care of us all, but if he wasn’t in the picture for some reason, i would be well & truly fucked. disability exists exactly for people like me: to enable us to live independently even though we are not able to sustain long-term gainful employment. i haven’t been coasting along for 14 years thinking, “this is a sweet ride, but if it ever stops, i guess i will go be a sixth grade teacher or a paralegal.” i’ve been thinking, “thank god i have this because i don’t know what i’d do otherwise.” i’ve had many years to ponder my options & the bottom line is that i don’t have many. & trust me, i don’t enjoy acknowledging this. not only is it terrifying, but it also makes me feel unbelievably shitty. how much less guilt would i live with on a daily basis if i could feel that i was truly a productive, contributing member of society? this is exactly why i talk about my issues/being on disability as little as i do: it straight up makes me feel like shit.

      1. I’m sorry, Ciara. I feel like a dolt. I do hope you get your benefits back because I know that you need them. My suggestions were meant to be reassuring and complimentary, but I see that they were pretty clueless. For what it’s worth, you are a productive and contributing member of society regardless of whether you are part of the workforce.

        1. it’s okay. i totally understand where you were coming from. i’ve been hearing a lot of that kind of sentiment: “you’d be really good at X, Y, or Z! you’ll figure this out!” & i know it comes from a place of people wanting me to feel less scared & more hopeful. which is not a bad thing.

          i feel like i need to think a lot about the ways i have masked my disabilities over the years, trying to blend in & portray myself as…i was going to say “a normal person”. which is kind of fucked up. i’m not sure how else to phrase it. i almost never tell new people that i am on disability & when they asked what i “do,” or what i did before i had ramona (because the assumption nowadays is generally that i chose to be a stay-at-home mom), i vaguely mention things about writing & let them assume that i somehow had a writing career that generated a living. because being honest feels like complaining, or being “too intense,” & i am terrified that if i talk honestly about my struggles with anxiety & depression (especially–but also the physical stuff), people will think that i must be a bad mother.

  3. See, as a professional editor, you would correct my you’re/your mistake, and probably countless others!

  4. that’s awful. I’ve had a lot of shitty experiences navigating social security too, and it’s one of the most fucked-up, anxiety-inducing experiences there is. Good luck.

    1. thanks, i appreciate that. the funny thing is that everyone at my local social security office was wonderful. one woman was like, “try not to worry too much, it will get straightened out,” & another was like, “you mean you haven’t experienced miracle faith healing?!” but they’re not the ones that make the decision. oh well. at least they made the appeals process easier/less stressful.

      1. Yeah, my problems have generally been less with individuals and more with the overpowering bureaucratic awfulness of the system. Sometimes it helps when I think about it as a particularly draining job! Sometimes not.

        1. yes, the bureaucracy is terrible. the paperwork is so exhausting & awful. i am finally starting to come out of my latest bout of depression, but having this shit hanging over my head is making me stall out. a lot of social security workers don’t even seem to completely understand social security’s rules.

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