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pitiless-achilles-wept · 3 years

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Not dead yet!: Marking my 2-year anniversaries

On Sunday I marked my two-year “cancerversary” of my diagnosis and on Tuesday a member of the support group I co-founded (for young women who are stage 4) died. Like me, she had triple-negative breast cancer. Like me, she was diagnosed stage 4 two years ago. Like me, she had exhausted several types of treatment (because triple-negative is a beast) and was looking for the one that would work. She asked me about Saci (Sassy!) and proposed trying it to her doctor less than a week before she died. Nine days before she passed she joined our Sunday cancer yoga group from bed at the hospital to join our meditation exercises. Like me, she remained confident and positive and absolutely refused to give up hope. (Like me, she also wore her hair purple sometimes.)

There were many things that are unlike about us too. She had two teenage children who now don’t have their mother. She was twelve years older than me and had had Hodgkin’s before she had breast cancer--even worse luck than mine, to triumph over one cancer only to get this diagnosis. Unlike me, she wasn’t strong enough for Saci, the only targeted triple-negative line of treatment, because her body had reacted badly to immunotherapy. She was in the hospital for two weeks with somewhat mysterious symptoms all of which added up to her body shutting down. On Saturday she went home with her family in hospice care. 2 days later she was gone.

It’s not usual for things to go so fast. Typically, doctors, patients, and family members all have some advance warning and patients spend a solid amount of time in hospice care. I am sure that people will ask me why it went that way for her. I’m asking myself why too, since it is so shocking and so entirely unfair. The fact that it can happen that way at all is frightening to me as a fellow patient since it’s the scenario of nightmares. That really could someday be me. No one ever wants to think that--and I cannot live my life focused on it either--but it has to be acknowledged as a possibility.

[More below the cut about memories from 2 years ago today and hopes for the future. Also, an invitation to contribute to some writing if you want.]

Today, January 28th, is the 2-year anniversary of my stage 4 diagnosis. In a way, it feels more significant than my initial cancer news. I had four days being horrified, but thinking that I would get through this as a phase in my life. It would be terrible--I’d have a double mastectomy, scorched-earth chemo, radiation, anything to get rid of the cancer--but then it would be done. On the Monday following my first set of CT scans I learned that that was not true. My lungs were full of tumors. (Later, after lots of waiting, MRIs and biopsies, I'd find that my lymph nodes, spine, and liver were affected too. I still have tumors in all those locations, but no new ones.) I wrote a description of getting that news in an email to a friend over the summer, after I had read Anne Boyer’s "The Undying”:

“The worst part about the lung tumors for me was that my dad had gotten a very early flight and I learned the news while he was in the air. My mom told me we could not text or tell him on the phone, that he would need to be with us both. So I drove to Newark straight from the doctor's office. It was in the teens outside and windy as we slogged to the baggage area where we were to meet. I saw my dad in his warmest and ugliest puffy orange down jacket, looking small in it, forlorn and horribly vulnerable. I fell into his arms, thinking at least that airports were such horrible places, so impersonal and banal, that no one would look twice. 'It's in my lungs,' I said into his shoulder so that I would not have to see his face. I was crying into the jacket that somehow smelled of winter cold even though he had been inside for hours. 'Please, Daddy. Fix it, please.' I spoke like a child because, on some very deep level, I think I really did still believe that my father could fix anything. I was embarrassed, though, and so I tried to stem my tears as he put his big hand on the back of my head and said, 'Oh sweetie, we'll get through this. We will.' I knew that really he could do nothing--and that this was his nightmare of powerlessness--and so I sniffed and blinked and I did not let myself cry again until June.”

Two years later this moment seems as if it just happened. The impact of my diagnosis on everyone dear to me, and especially my parents, is one of the worst things about it for me. We all know that there’s only so much “better” I can get, with the current science, and we’re all playing for time while the research moves forward towards something better, something that would make this a treatable chronic condition. I go back and forth, emotionally, on how likely I think that is and how good my position is for the future. Right now, comparing myself to the group member who died, I feel relatively fortunate, even as chemo exhausts me, I lose every scrap of hair that was ever on my body, and I spend half of my days being almost unable to eat from nausea and loss of taste. I feel glad that I was able to get Saci, that my body has so far stood up to the ceaseless trials I have put it through, with four treatments and surgery (and full-time work and living alone etc. etc.). I feel strong, not scared, even as I feel the emotional toll of terrible loneliness from covid isolation, winter, and carrying a sick body through my days alone.

I do not love the “fight” metaphor because so much of having an illness is completely out of your control and I never want to take myself (or anyone else) to task for “losing.” And so instead I will praise my body for enduring. I will praise myself for my enduring also, in both an emotional and physical way. I checked back in on how I was feeling as this anniversary approached last year and was pleased to see how much better I feel about it now, partly as a function of being in a treatment that is (likely) keeping me stable rather than in the midst of choosing another new one. Here is what I wrote back to my group of friends in November 2019, the run up to the one-year mark:

“I’m feeling like I can’t plan and don’t want to celebrate, like I can’t perform “fine” for the people in my life to spare them from the pain I’m causing by not doing better and feeling horrible about it. Perhaps it would help if I let them know that they didn’t need to perform “fine” for me? I understand the desire to protect me from the obligation to take care of them and appreciate it. But sometimes it can feel like I’m the only one experiencing anger or grief or pain, though I know I’m not. Feeling so isolated in my emotional response provides no catharsis for it. Compassion and sympathy function on the notion of “fellow feeling.” If you’re just out here, feeling by yourself, you can’t expect any comfort. As always, I think of the moment in the Iliad when Priam and Achilles cry together over dead Hector. Grief (and you can grieve for many things aside from a death) is something explicitly to be shared.” So I guess I’ve shared it here. I can do that. And I can do another thing, which is to tell you I love you. People don’t really say it enough and reserve it too entirely for romantic contexts. It’s weird--it’s not like we are wartime rationing love! And every time anyone says it to me it helps. It’s an affirmation that I am integral in some way to people’s lives which, in a society that so greatly valorizes marriage/partnership and children, is something I can be in doubt about.”

There are some things I like here, though, and that I would now like to reiterate and invite you, my far-flung friends, to do for my 2-year milestone. Never has the notion of “fellow feeling” in times of grief and depression hit harder or been more important than during covid. In a way, the nation (or even world) was forced into much the same position, emotionally and practically, that my cancer put me in. People are isolated, unable to perform “fine” and wondering if other people feel the same way, or even if any of us can take care of each other at all. I am here to tell you that you can. Maybe not immediately but--sooner than you think--you can. Emotional reserves may be low but reaching out to support someone else can actually replenish them. You do not have to feel alone, or to feel, alone.

And for me, for this milestone and for the cancer-related depression that I certainly do have, I’d like to invite you to help me, so that I can do the same for you. I invite you to write something about how this milestone feels for you (either about me or not), how it relates to all the other insane things going on in the world or with you (not about me at all), how you felt on the original day when I shared my stage 4 diagnosis (definitely about me)--really anything that is on your mind or in your heart.

“Oh great,” you may think, “the English PhD has asked us to do homework!”. But no! It's up to you what you do. Write in whatever form you want, however long, even anonymously. And if you do I will write you back! Not with grades or comments, but with something to connect to what you shared. It is a way to create fellow-feeling; to open up, connect, heal. With me, yes, but also as the group of extraordinary people who have gone with me so far on this hard road. It’s a very different proposition to support someone through time-limited treatment with a good outcome than it is to sign on for whatever comes next. You are all, truly, pretty extraordinary.

Anyone who wants to send a note or reflection can email me or drop a file or post in this Google drive folder. Like I said, feel free to share whatever and do it anonymously if you’d rather. You can also askbox me here (better than DMS) or submit a post to this blog. (I'm taking a chance with open DMs for now...we'll see if that needs to change.)

I am grateful for all of you every day, but especially today.

Love, Bex

p.s. The title of this post refers to the cinematic classic "Monty Python and the Holy Grail," a film my high school self and friends loved. They, along with other wonderful folks. gave me a "cancerversary" cake with "Not dead yet, motherfucker!" on it this Sunday. p.p.s. The average life expectancy for people who get this diagnosis is 18 months to 3 years. Hitting 5 years would be extraordinary. Starting Year 3 is a huge deal and I have every intention of being extraordinary. (Never been average at anything in my life...I either succeed spectacularly or fail epically!)

#my life as a cancer patient #cancerversary #stage 4 #mbc #metastatic breast cancer #personal #memories #bex writes #writing invitation #quarantine life

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surveys-at-your-service · 3 years

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Survey #301

“i was waiting for my chance to find the light”

Did you like the beach a lot more as a kid more than you do now? Why/Why not? I did. Everything was more fun as a kid. I never REALLY loved it, though, because I did and still do hate the heat and walking through sand and getting it stuck all over you. It's pretty much torture now because I have extreme difficulty walking through sand. Has there ever been a time where you just couldn't stop crying? Explain. I know I've had days many years ago when my PTSD was truly awful where I'd sob multiple times a day. What's your least favorite time of day? Why don't you like that time?Late afternoon, like around 3-4 or so. By that point I'm usually bored senseless and going downhill. Do you like your lips? Do you enjoy kissing? They're fine, ig. And I mean yeah, if I'm really into the person? Do you like any music from the American Idols? Which ones? Ngl, I don't even remember any besides Kelly Clarkson, and who the FUCK doesn't like "Breakaway." Do you like when people challenge you? If so, in what? No, I get nervous about embarrassing myself. Personally for you, is falling for someone way beyond your control? It is entirely out of my control. What's something other than a fruit that you love in milkshakes? (Ex.twix ) Mostly chocolate stuff, haha. What is your all time FAVORITE milkshake? Ever tried the Reese's Blast from Sonic? That's some A+ shit. What's the latest you've ever stayed up reading a book? No clue. When having a peanut butter & jam sandwich, what is the best kind of jam? Grape. Do you like to write poetry? Yeah, but it's been a long time since I wrote anything. I used to do it aaall the time, but now I have to be seriously motivated and dedicated to the idea. When you get mad do you cry? Absolutely. Would you ever consider modeling? No. I do think one or two model-esque photos of myself would be nice and possibly help my self-confidence, but it's not something I'm seeking out and paying for. Are you scared of crossing bridges? Not very, no. If they're kinda sketchy-looking, I might feel a tad tense, but I'm not really scared of them. Would you consider yourself clumsy? I am unfuckingbelievably clumsy. Ever bought ice cream from an ice cream truck? Yeah, sometimes Mom would let me and my sisters do that as kids when one came through our neighborhood. Have you ever had a poem or story published? No. If you had/have a kid would you ever let them get a tattoo? If they were of the appropriate age, of course. And if they were getting it done professionally and not at some party drunk with friends. They better be in a sterile environment with someone who knows what they're doing. Do you love guinea pigs? Absolutely. I had three or four as pets when I was a kid. What is the worst thing you ever did that got you grounded? Probably run away from home. Have you ever been chased by a snake? No... and this is a misconception. Snakes don't chase. They go for what they see as the safest escape route, and sometimes they identify your own chosen direction as where they wanted to head, too. Where do you wanna work? I want to be a freelance photographer. What awards have you won? A lot of "A honor roll" trophies through school, among other academic awards. I seriously don't know what happened to that intelligence. I also have dance awards and lots of childhood sports team stuff. Would you consider yourself good at taking care of kids? I don't think I am, no. I'm way too nervous and awkward around kids. I've had to babysit for my sister twice though, and Ashley told me the kids had lots of fun and had no complaints. I guess like... I can do it, I am just very, very uncomfortable taking kids under my wing. I worry about leading them in the wrong direction. How old would a guy have to be before you wouldn't date them? I don't know, it would really depend on how much I was into the person. I generally stick with the approximation of a ten year gap though being my limit, so I think maybe him being in his mid-30s would make me feel a bit too weird. Be honest, have you ever tried weed? No, but quite honestly, I'd probably try an edible. I refuse to smoke anything for my lungs' sake. I'm curious if medical marijuana would actually be beneficial for me. Has anyone ever broken up with you with a note? No, but uh... I have, lol. It's how I broke up with my "puppy-dog love" boyfriend in middle school. Literally after he asked me if I was thinking of breaking up with him, and I said no before handing him the note because I was just too scared to do it to his face. I know, that was absolutely awful. Never, ever do that to the most innocent boy ever, kids. He didn't deserve that. Do you have sensitive teeth? Kinda. What was the worst thing you ever did to get detention/suspended? I've only ever had detention once for having too many tardies to my first class of the day in high school. We'd frequently arrive to school just a few minutes late because I was fucking impossible to drag out of bed. Have you ever suffered from post-traumatic stress disorder? Yes. Do you suffer from nasal allergies? Yes. What's your favorite kind of pudding? I only really like chocolate pudding. Have you done anything really interesting lately? I guess you could consider starting a virtual partial hospitalization program "interesting." It's not the intensive version like my first was, but rather being shorter. I just really need something to get my mental health back on the tracks. What’s the latest really fun thing you’ve done? REALLY fun? Hell if I know. I don't experience "fun" a lot at all anymore... I only ever feel like, this watered down, unenthusiastic sorry excuse for it. Have you discovered any good music lately? Oh yeah, I've found lots of 3TEETH songs I'm mad into. "ULTRAnumb" by Blue Stahli is also a total bop. How about any good new television shows? No. Or perhaps some interesting books? Nothing new, no. Have you picked up a new hobby or learned a new skill? I mean, within what timespan? Nothing lately, really. Has anybody ever done your makeup for you? Yeah. Do you own any sparkly items of clothing? No. What’s the most colorful accessory you own and use? *shrug* Do you enjoy drag artists’ work? If so, name some of your favorites. Oh yes, I have wild respect for drag queens. I don't know enough of them to have a fair favorite, but I do watch Trixie Mattel on YouTube and he is a goddamn hoot. What, right now, is the best thing in your life? Um. I don't really know. Probably the fact my mother still lets my too-big-for-the-nest ass to live with her... I don't want to picture how my life would be if I didn't have her still essentially holding my hand. What’s a place you like to go to when you need to get away for a bit? I actually love car rides for this, so long as I can ride passenger and just blare my music and not talk. It's so odd, being afraid of driving but finding great freedom and comfort in just... going. Do you like apples? I love apples. Anything exciting coming up for you in the near future? I paid the deposit for my tattoo appointment, so it was officially scheduled in May!! I was expecting an open date to be kinda far with just how amazing this parlor is, so I wasn't too shocked to hear I have to wait a few months, but man I can hardly wait. When you get an account for something, what's the first username you try? Unless it's for a "professional" site, in which case I'd use my actual name, I just about without fail with use "Ozzkat," or replace the "o" with a zero if that's somehow taken. Would you be okay with a friend wanting to date one of your exes? Which ex? What kind of accent do people typically have where you're from? Southern. Does history interest you at all? Can't say it does. What's something you wish you could do-over? There are many things, man. Is your hair in layers or is it all the same length? Neither, really. The left side of my head is very short/shaved, and as the hair goes around to the right, it gets longer. There aren't "layers," though. Is there anyone who you're afraid to be in a car with, if they're driving? I wouldn't say afraid, but with my sister's road rage and serious tail-gating issue, riding with her can make me nervous. What's something you're very good at? Um, I guess creative writing. Do you like sour gummy worms? oh FUCK yeah Would you pick up a hitchhiker if they seemed harmless? No. I am way too paranoid for that shit. Would you be bothered if your boyfriend liked to bite you? Uhhh I'm going to assume you mean this in a sexual context, in which case I don't care so long as it's not in a visible spot. How often do you get the opportunity to be completely alone? The answer used to be a shitload, and seeing as I'm in my room most of the time, I still feel like that's kind of true, but since Mom's cancer diagnosis and she had to stop working, she's usually home with me. I like it that way, though. Total isolation is bad for me. Do you have a trampoline? Nah, haven't in many years. What's your favorite Pixar movie? Finding Nemo. What is the strangest thing you've been asked? Something sexual that made me extremely uncomfortable. What’s the weirdest thing about life that people just accept as normal? The fact we put so much worth into pieces of green paper. What's the most random thing you've done out of boredom? *shrug* What show did your parents not let you watch as a kid? There weren't any specific shows that we even wanted to watch that Mom forbade us to see... I mean she certainly wouldn't let my sisters and I watch something like South Park as little kids, but none of us really sought unsuitable shows out. We were all about Disney, Nick, and Animal Planet in my case. What is the most pleasurable feeling that doesn't involve anything sexual? What comes to mind first is a big hug from someone who makes you feel safe when you don't anywhere else. What was your last "oops, wrong person" moment? I'm going to assume I sent somebody a text meant for another person. I'm super careful about avoiding stuff like this because I get horribly embarrassed, so it's difficult to recall the last time I slipped up. What do you find attractive that isn't considered "normal" attraction? Having a broad imagination and drive to create. What’s the dumbest thing you’ve done drunk? N/A What's something you really enjoy, but can't have? A pet tarantula because Mom refuses to let me lmao. I'm so into them now and desperately want a Grammastola pulchra. What Wikipedia article have you recently read? I haven't read any recently. What subject should be taught at schools, but isn't? Basic adulting and financial skills. What is the worst game you've ever played? I dunno. I've played sooooo many video games throughout my life. What tragic event was coincidentally beneficial to you? My overdose because it led to an intensive partial hospitalization program that totally changed my life. What did you think was cool when you were younger that you now think isn’t? Good question... What are your favorite or most memorable lines from any movie/show? I vaguely remember the concepts of some quotes, but not well enough to recite them. None that are seriously memorable or heavy pop up in my head now. What's a good example of 'Don't knock it till you try it'? Putting peanut butter on top of waffles with syrup. It is fucking delicious. What's your go-to get pumped up song? 5FDP's cover of "Mama Said Knock You Out" is badass HYPE. What's the dumbest thing your parents have said or done? Well, through a family assessment before my current partial hospitalization could begin, I very recently learned my dad fucking did drugs before my sisters and I were born, including shit like cocaine. That was great to suddenly learn. As for my mom... probably have a kid too young? She doesn't talk very much about her eldest daughter's history with (and without) her, but I know enough to know that was a very rocky time in her life. What are some things you wish existed? Cures for countless illnesses, and I also have SUUUUUCH a yearning for some kind of technology that could copy an image in your head onto a drawing device. If only I could draw how/what I see up there... Which person shaped you the most? Jason. Or Mom. What’s the one movie you couldn’t finish? Why? Couldn't tell you; I just haven't watched enough. What's a small thing you have a big passion for? Meerkats, quite literally with "small" lmao. What change have you made recently to help the environment? I have metal straws I try to remember to bring with me if I go out to eat. What was the hardest thing you've ever had to forgive? The way Jason left. Is there anything or anyone you're angry at, that you haven't forgiven yet? I sometimes question if I truly have forgiven Jason. I lean kinda heavily towards yes, I have, I'm just bitter about it all regardless. Have you ever plotted revenge against someone? No. Have you ever done anything to get revenge against someone? I can't think of anything off the top of my head. What is the greatest longing of your heart? To feel purpose. Who was your first love? Some guy in high school who "had" to talk to me upon seeing me the first time, only to wind up wanting to hear nothing from me later on down the line. What denomination is your church (if you go)? N/A What was the first year you voted in a presidential election? This most recent election, actually. Have you ever been afraid of the world ending? I used to worry it would happen in my lifetime, but now I don't. If it ends, it ends. I ain't got much to lose nowadays. What is unfair about your life? My mental health. My financial position. I'd rather not focus on the billion shitty things going on in my life rn, so next question. Did you write love poems when you were younger? ugh Who are you jealous of and why? There's a lot of people I'm in some way envious of, honestly. Have you ever had an account of yours hacked? Yes. Thankfully nothing major happened. Have you ever been a victim of police misconduct? No.

#survey #surveys #questions #questionnaire #lyrics: ''creatures x: to the grave'' by motionless in white

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marvelingjules · 4 years

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My dad wanted to get a video from a text sent to him sent to his email and facebook.

I was showing him how because he - well, he didn’t ask, he said “One of you’s going to have to help me.” From that alone, you might guess how this is going to go.

So I show him that first, he needs to save the video from the text onto his actual phone. He says he wants to send it to his desktop computer, so I said he can email it there but it depends on how big the file is (I was hoping it’d be short enough to email, because downloading is going to be Too Hard for him to bother to learn). I’m showing him and he walks away, talking about how he wants to send more than one video, blah blah, and I mutter to my mom about how am I supposed to show him when he doesn’t actually pay attention?

So she says “(Dad) you need to come here so she can show you.”

And he just SNAPS at us both about “Fuck, I was just taking care of a the - just one thing I was doing, jesus christ you two!”

So I put the phone down.

And he got even angrier, snatched it up, cursing at us as he did, and stomped into his room and shut the door loudly.

So I took a breath, bit back the first thing I wanted to say, and instead said very calmly, “Figure it out yourself Dad. But if you need help, come ask me when you’re ready to be polite.”

Because I’m very tired of how the past year he’s used the fact that he’s on a lot of meds and getting chemo as an excuse for losing his patience and snapping and snarling and treating all of us poorly. And my mom’s always got an excuse for him - and no. You know what. NO. He’s a grown-ass adult. He is 66 years old. He knows how to fucking ask politely and use manners and how to treat people. And before his diagnosis of lung cancer, you know what? He was actually doing better about apologizing after snapping at us, and trying to be calmer and more polite, and after he just stopped and has backslid so much. And I get it, it’s stressful and meds fuck with you so bad - hello, I’ve been on a few of his meds for his COPD for my asthma my whole fucking life. I have LEARNED how to cope and deal with the irritation and agitation and the way it makes you sometimes feel like it’s all Too Much. And when I mess up and lash out, I apologize. I say “I shouldn’t have done that, I’m sorry.”

So he can damn well learn to do it himself. Especially since all my life he’s always claimed that meds are no excuse for acting like that (he said that a lot when my little sis was on her depression meds).

So if my mom’s not going to step up and call him out on being a shitty person to us, then fuck it. I will. And you know what, he can get mad and yell at me all he wants. He can get petty and passive aggressive and ignore me for a week or more again because I called him out on something. He can try to act like nothing happened later when he’s cooled down, realized I’m not backing down, and that yeah, he messed up.

I’m still not going to stop. I’ve always tried to not call him out too much because I have to live here. I have to live with him, and my mental health takes a serious hit usually when I have to deal with him really being an asshole, cruel, and passive aggressive at me. (And yes, when he’s particularly upset with me, he lashes out with very cruel words. Usually unexpectedly. Twice it’s been something bad enough to send me into some form of anxiety/panic attack. No, he never apologized for the things he said.)

I love my dad. He’s often a pretty good person, and a very supportive dad. I know if I need him, he’s got my back.

But that doesn’t mean he’s infallible, and it doesn’t mean I have to tolerate him being a jerk to all of us.

So yeah. I’m going to call you out on being rude, Dad, and I’m going to walk away, and I’m not going to just silently let you talk to me or mom or little sis like that when you want us to do something for you.

Fuck being the “better person” or “more understanding”. There’s a difference between being patient with someone and being a doormat, and lately it’s veered too close to the latter in this house regarding him than the former.

#Jules rants #do not reblog #I'm fucking serious do not reblog if you do I'm gonna block you #family issues

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ahrensarchive · 4 years

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Tell Me I'm Dreaming ; Self-Para

—> where: HOAG Presbyterian Hospital

—> when: December 7th, 2017 —> Part 1 of ?

Beeping. Buzzing. Humming. Ringing.

All of these noises had become so familiar by now, Ahren could hear them even in his shallow state of sleep; another frequent familiar that he'd grown to stay zeroed in on. Tonight seemed to be no different.

How did it get to this? Why her? Why now? Why so fucking soon?

Those questions plagued him as he gripped his mother's hand–half-asleep at her bedside half crumpled up in a cheap reclining chair right next to the hospital bed. The sound of the oxygen machine was what woke him up this time, the soft sound of his mother's breathing enough to have him sitting up in a panic and searching for the source of the sound and if it was bad or not before slowly coming out of the groggy half-sleep he'd been in just moments earlier. A heavy, exhausted sigh left him as he rubbed his face with his free hand, the other still wrapped around his mom's before giving it a gentle squeeze; coupled with a kiss to her knuckles as he muttered 'I'm just going to have a smoke, Ma. I'll be right back, okay?'

By now, the hospital staff on that floor knew Ahren by sight and his mother by her first name. Two months prior hed brought her in for one of her follow up appointments, only to end up practically living there while he did what he could to help her. Some days she would be sitting up and talking, but other days she was distant- weary and standoffish when Ahren would try to hold her hand or talk to her, and some days she just slept. Today had been one of the better ones, but as much as Ahren would deny it, sometimes those were the hardest days of all. The ones that gave him hope that maybe, just maybe, she could beat this– maybe it hadn't spread like they thought, maybe she would be okay, maybe he wouldn't have to give the universe the last piece of his heart… Ahren felt as if he was drowning in 'maybe's and 'what if's that seemed to have no end to them.

Through his haze he'd made it to the end of the hall and outside, digging a cigarette out of his pack and lighting it once he'd pinched it between his lips. No sooner did he get a drag off his smoke, as he exhaled his first puff his eyes began to sting with the threatening prick of tears. All he could do was try to steady his breathing, but the more he tried, the more he failed to keep his composure. As his back found the brick wall behind him he slid down it -or as best as someone could against brick- and sat himself on the ground as he continued to take puffs off his smoke; sniffling and wiping his eyes as he finally let himself acknowledge the anxiety that had been stewing inside him for months now since his mother's diagnosis. To watch the hardest working, strongest person you know wither away into a shell of who they once were was something Ahren was never really prepared for– at least, not like this. Not with his Mom of all people. It had always been him and his mom for as long as he could remember before she ever married again, just the two of them taking on the hardships and downfalls life always seemed to throw at them but they always powered through together; his mother always made a point of explaining that life never gave anyone a handout if they were meant to be here. Everything came with nothing short of busting your ass to make yourself comfortable for the rest of your life, and even then that never came easy to maintain. But no matter how much life had thrown at them prior to this, nothing could've really prepared Ahren for that diagnosis his mother received that day two months ago.

'Stage 4 lung cancer'.

It rang in his head like a busted alarm clock, ticking and ticking away the time he had left with the only person he truly showed unconditional love to. The only person he still called his best friend after the people who had come and gone throughout his life. The only person who would truly have an impact if he had to lose her…

The anxiety of it all gripped him by the lungs, forcing the air out in a shaky breath in his throat as he sobbed quietly into the heels of his trembling hands; part of him glad he could fall apart alone outside without someone asking if he was okay or trying to comfort him. At this point, there was nothing that could comfort him, nothing that could make this better in any sense- and he knew that. Out of everything, Ahren was a realist, and reality was hitting him like a freight train to the face now that he was finally letting himself feel any of it. He even sat there for a little while after he was finished his smoke, just to sob it out; not wanting to drag any of those negative thoughts and feelings back into the room with him when his mom had had a good day today. Instead, he finished his sobbing fit, wiped his face, went back inside and pushed his emotions aside with a small smile as he walked back into the room and sat himself back down beside his mother; though like always, she immediately called him on it.

"why's your face red like someone just told you 'no'?" she asked softly as Ahren slipped his hand back into hers. A soft, genuine chuckle left Ahren as he smiled at her for real then, shaking his head a little to try and dismiss the leftover tear stains on his face.

"Ah, nothin' Ma.. I'm alright, don't worry. Are you good? do you need anything?" Ahren tried to turn it around but Margret never took too well to that.

"you could make me a cup of tea and tell me what's wrong, maybe get me another blanket," she hummed with that smile she always gave him when she was just going to keep badgering him for an answer—which she always got out of him anyways but she always threw it in the middle of something he could do for her when he asked. He couldn't help but smile and nod, squeezing her hand before he got up to grab another blanket to put on the bed and turn on the little kettle he'd been allowed to keep in her room along with all of her things. He sighed as he thought about how to talk to her about it, knowing the idea of dying scared his mom just as much as it scared him. As far as she was concerned, she was going to be fine and be back at work like she had a bad case of the flu and the last thing Ahren wanted to do was shake that confidence in her; everyone telling him that the confidence and positivity was a big part of her recovery.

"I just… what am I gonna do if something happens to you, Ma? I'm not sure if I'm ready to lose you to this shit…" he muttered as he unfolded the blanket and flicked it through the air before laying it over her entirely, tucking the sides in around her to keep warm before turning back to the kettle when it finally clicked and shut off when it was boiled. "I may be a grown man but I'm not ready to lose you."

She was quiet for a moment, but she was still smiling warmly at him like she always did when he had a hard time talking about something.

"The same thing you did when you first moved out, same thing you did when we lost Caleb, and the same thing you'll do when and if this does become too much—you're going to carry on like the man I raised you to be. Even if this gets to be too much, you're going to be okay. Don't doubt yourself so much, honey." she waved her hand a little in a dismissive tone as if they were talking about losing a job or something as casual as the weather. Ahren finished making her cup of tea and set it on the small-wheeled table and pulled it around to the bed for her before holding his hands out for her to take and pull herself up properly.

"You have too much faith in me, Ma. I'm still going to be lost without you, y'know.."

"I'm your mother- of course you're going to feel lost. I was the one finding your socks for the first fifteen years of your life," she chuckled softly, coughing a little in between before sipping her tea gently to help her dry throat. "it will be hard, but you'll get by. don't you worry about me, love. Just spend this time with me. Turn on the laptop and set up my show, come watch it with me." His mother was always so dismissive of the topic when Ahren brought it up, and all he could do was sigh and grin at how she just smiled at him and told him to put her show on for her. He chuckled softly and reached for the laptop in the bag next to the bed, turning it on and getting everything ready so she could watch All My Children like she would have if she had been at home.

"No problem, Ma. Whatever you want, you got it."

#“ ━━ ◤ rulers make bad lovers - better put your kingdom up for sale; self-para. ◢#cancer tw #“ ━━ ◤ rulers make bad lovers - better put your kingdom up for sale; ams. ◢#edited*#[ self para ]

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mellenwood · 5 years

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Grief is the Fuel of Writers

In class on Tuesday, we watched an interview with William Maxwell, who wrote So Long, See You Tomorrow and many other works. The interviewer asked him what makes a good writer. His response is what struck me. “Deprivation or some loss makes a good writer.”

As a young boy William lost his mother and he drew from that in So Long, See You Tomorrow. He went on to explain that he couldn’t put his life back together or the way it was before, so he put it together in the pages of a book.

As an amateur writer, I often think of writing about what I have lost to make sense of it. On one hand, I know there is a goldmine of information in my head about it, but on the other, I am terrified of all the feelings that I buried will come back up. It is seldom that it gets brought up and I don’t cry. I don’t like to talk about it. In fact, not many of my college friends know about it.

When I was in the 7th grade my aunt was diagnosed with Stage IV ovarian cancer, it was absolutely devastating. She had surgery and they got it all, but of course, that doesn’t mean it won’t come back. About two months after that my grandma was diagnosed with Stage IV breast cancer. She also underwent surgery and it was successful. They both recovered and spent about two years in remission. Then it came back for both of them. My aunt’s cancer was in the lining of her lungs, and my grandma’s cancer was in her bones. Another two surgeries between the two of them and many late hospital nights later they were both in remission again! Then came the five-year mark from the fateful diagnosis day, and cancer reared its ugly head and came back with vengeance.

It was my senior year of high school when it attacked my grandma’s brain and took her from reality to some alternate world. I was the only one who could comfort her when she became afraid. There were many nights spent at her house helping my grandpa and staying up with her till she fell asleep. She fought though. I will never deny that fact. She wanted so badly to stay with her grandbabies, but on September 30, 2016, the cancer won. It attacked my aunt’s organs and stomach lining. She was tired all the time and didn’t want to be a burden to anyone. She was the most gracious, servant’s hearted person I have ever known. She was in the hospital at the very end because she couldn’t eat or swallow. On November 14, 2016, it beat her too.

I, unfortunately, do not remember most of that year because I was just trying to get through it. My brother was the only one who truly understood what I was going through. My friends and teachers tried to help with their words of comfort, but when grieving those words fall flat. I know I read a lot of books. I do remember reading The Fault in Our Stars by John Green at least 5 times during my senior year. I know that is a lot, but it was the only book that touched on the topic that was realistic. I also remember going to the gym a lot with my volleyball coach and just hitting balls over the net on repeat and shooting hoops with my brother. No talking just leaving it all on the court.

Looking back now it is still really hard, but I am in a much happier place. As my mom says, I got my laugh back.

Not everything about my senior year was totally crappy. I started dating my now husband in 2017, got accepted into Bethel, and had the first winning season in girls’ basketball in the history of the school. I also started healing.

Now that I put all of that on paper, I do feel a lot better. It is off of my chest. The words just kept flowing out of me. I have to agree with William Maxwell if writers didn’t have any loss their books would fall flat. They wouldn’t connect with the readers because it would seem fake.

Although happiness is generally the preferred emotion, grief or loss is what fuels us to write something meaningful.

#grief #loss #writing #William Maxwell

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unhinged-diaries-blog · 6 years

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Does she or doesn’t she: 6 letter silence

My SIL S told me she thought everything was good and once my brother J got home he told her about the mass and at that point she wanted him to call or my mom to speak. I don’t think Mom understands the gravity that she has cancer. We’re trying to get her on Obamacare but it’s difficult because she makes too much and they count her social security, dads social security and pension (she’s making about 30K) a year.

She officially has moved in with J which is a god send because she has a real bed, somebody to help her with doctor appointments etc. I’m sitting here studying for a quiz tomorrow and all I think is if the appointment she just went to said it was sinus infection which caused her to lose 10% of her normal voice and if it hurts to swallow which is causing her to lose weight and if there is a small mass in her long to me that is potential he saying it is metastatic cancer and if there is cancer in her long it could potentially have spread to her throat which is causing her to lose her voice

This to me means in all theories it is metastatic cancer. My brother and his wife have diligently looked into this without any confirmation from the doctor and it is quite difficult to go to a doctor especially when one does not have health insurance especially when one does not intend to pay the bills due to limited funds etc. my brother is trying everything he can to get her on Arizona’s government insurance but they drag their feet and less you are counting at their doors and we are in a time where we feel well rather I feel we don’t have the time to fuck around and we are in a position where my mother desperately needs Health insurance to get the scans read and to diagnose if it is cancer which more than likely it is

if there is a black mass in her left lung from years of smoking etc. that it’s telling me it is cancer and with the CT scan she has already taken and from gathering information my brother mentioned at stage to because when taking a CT scan they cannot diagnose it stage one with the scan because it is too early in stage one; however with stage two it tells the doctor through scans that this is where were at

Months ago maybe even weeks ago I had spoken with my mother and I said let’s start over I know we have a shit relationship because your alcoholism and your disease and I want to put this behind us and I want to start fresh but I knew last month she didn’t have a lot of time left it wasn’t a good feeling but it was a feeling that you need to take a video and pictures of your mother because you don’t have long. I don’t understand it when it comes to my family because when my grandmother was diagnosed with cancer he had seven months with radiation and if we can afford radiation which we clearly cannot how much time does she have left without a diagnosis

We were talking weeks it’s not the fact that I want celebrate another birthday with her and it’s not the fact that she won’t get to see my children or see me graduate from University it’s the fact that you’re growing up we wasted so much fucking time dealing with her alcoholism her anger her nastiness her outburst and now here I am sitting at almost 33 to break down and cry because if I break down and cry am not gonna stop in if I can’t stop I can’t continue doing this no cards and studying for this fucking quiz I have tomorrow I can’t just sit here and do nothing but I am at a point where I cannot save her I’m not God oh I can do is fucking wait that is the worst fucking feeling in the entire world is just waiting for a phone call just him and my mom dies should be more emotional and when I’m speaking about this voice is shaking my leg is shaking and I feel like I’m in a bad fucking dream

My husband, sister-in-law, and brother say not to freak out but how can you not freak out when one and likely my mom has lung cancer I might possibly have COPD and my mom possibly more than likely has emphysema - I can’t go on without her how I feel I’m in a relationship is so fucking complicated I’m not looking at the past I’m looking at right now and right now she’s 500 miles away I am completely fucking broke and I want to go see her I want to talk to her but what do you say when someone is dying when someone has a death sentence of how much time you have I can’t really speak with her because her voice is pretty much gone so I’m basically back almost 5 years ago when my grandpa and I chose not to go see him I’m choosing not to speak with her because it hurts me when it really is killing her

My oldest brother called me and he said he probably heard the news we talked I stayed very emotionally distant to where I don’t give a fuck about work or his finances and I asked him why are you still borrowing money from Mom and he said I’m not making as much as I did last year and if you’re not making as much as last year and you just brought a new child into the world and you’re still borrowing money from your very sick mother in my eyes you were a piece of shit and in my eyes you need a new fucking job

I asked him if his wife is working and he said no she’s on a brand new medication for her postpartum and I’m just thinking if her postpartum is this bad after your third child why the fuck would you have another child? I know I shouldn’t judge but if you are clearly mentally sick and clearly not doing your job on how to make your mental health better for not only you but your children when she take the proper precautions to maybe you know he’s fucking birth-control or tire tubes or even had your husband snapped and I know it’s not my body it’s not my choice and I shouldn’t be judging but this is going to impact for small children’s lives

I didn’t touch him I didn’t tell him how I felt I straightout asked him why are you still borrowing money when you are working why aren’t you making your bills and he’s like here’s the thing no motherfucker here’s the thing our mother is dying doesn’t have a lot of time left get another fucking job it’s what I wanted to scream at him I mean this dude just turned 44 with four kids and a bat shit crazy wife is trying to score drugs via mail what it’s going to happen when mom dies? You’re going to get elected? You gonna have to find a new apartment because you made the bonehead decision of staying in a luxury apartment where you are clearly making enough money, you have a mentally sick wife, you have a newborn and three additional children and you are basically living in a roach infested luxury apartment

Obviously comes from emotion and all this comes from anger but he continually makes these boneheads I’m sure he may have the weight of the world and he’s the only one working and he has a family to take care of but he’s clearly not taking care of his family if he is still borrowing $1000 a month from my mother when she makes between two and 2 1/2 thousand dollars a month

I could hold this against him but what’s the point it’s not gonna change the fact that my mother has a mass in her left long and has lost 10% of her regular voice it’s not gonna change the fact that my brother is a piece of shit and shouldn’t be borrowing money and should be taking care of his family and his bat shit crazy sick wife

This is why I just want to burn down Facebook and all social media because I can’t do this I can’t think how much pain my mom is in and if she can’t smoke for her medical marijuana for her glaucoma how was she going to deal with the pain? There is CBD oil’s, there is edibles and if it gets to the point where we have to make her comfortable how can we make her comfortable if my brother is still borrowing money?

This is why it is so important for cannabis reform. If you have any type a thing that aids in helping someone’s pain why would you not regulated? If you see someone dying of cancer or some god awful genetic disease and the only relief they have is from cannabis and state you were living in is making it illegal to attain it we clearly do not live in a free country if this is the war on drugs that we have here which is complete and utter bullshit

So please try or do keep me in your prayers keep my mom in your prayers ... I don’t know how long she has but we just got to make the best of this winter

#emphysema #Small cell lung cancer #lung cancer #glaucoma #mother #alcoholism #personal #how do you cope #mine #s #perspective

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thelordice · 3 years

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Hi, I’m Going Mad

I have to talk about this.

This is going to be long. I’m going to ramble. Rant. Possibly even have a miniature breakdown before your very eyes as I set to words the thoughts that have hounded me for the last hour or more. Naturally, if you’re prone to being triggered by major depression, self-harm, cancer, and the like, you may want to steer clear.

Because this is me.

I desperately want to try to make someone understand who... understand what I am. It’s a long-accepted fact that I’m not human - we’ll get into the logic of that later. But I need to know what I am... to figure out what I’m missing.

My young life... I mean, it wasn’t great, but it could’ve been worse. I never got kidnapped or molested, only broke one bone - a leg over summer break being a stupid kid. But it was lonely. I was raised in a trailer park full of older folk. Occasionally they’d have grandchildren my age over and I’d be able to socialize. But that wasn’t often, and I wasn’t well liked in school. Not that it mattered, because friendships outside school were impossible - both my parents worked and alternated watching me, so I could never go anywhere. My dad was 43 when I was born, and my ‘Mom’ was an Italian alcoholic that got custody of me through a screwy situation the likes of which you’d only ever hear in Florida - she had no biological relation to me. She was my godmother by sole virtue of being my alcoholic mother’s favorite drinking buddy. I had a friend... then he moved away. And then a year later he died from an infected cut at the ripe old age of 8.

But for the most part... I had my Bionicles, I had my imagination, I had basic cable. It was okay. Mom busted her ass to keep food on the table. Never really realized how until she finally called it quits at 61. She had been getting sick for a while, but always put me first. Always refused to go to the doctor. And then she went. By then it was far too late. Stage 4 lung cancer, it had already metastasized to her brain. The X-Ray of her lungs looked like Swiss cheese. Sure, she smoked a pack a day for almost 50 years, this was bound to happen. But that didn’t make it any easier as I watched a combination of radiation therapy and chemo literally melt the woman that raised me before my very eyes. She died a month to the day after the diagnosis. When she went to the hospital, she was... not great, but she could walk. She could keep her chin up. When she died... she was hairless, so frail, and so pale... hadn’t risen from a bed in two weeks, hadn’t spoken intelligibly in a week and a half... dad pulled me out of school early one day to go see her. I guess he must’ve known. Maybe the VNA called him. I don’t know. But it was Friday, April 25, 2008. I was 14, in eighth grade. We went in, sat with her for a while. She woke up a few times, looked around... and she tried to speak. “I am not,” she said. Trying to say “I am not home.” Because she wanted to die at home. But we couldn’t take care of her, with everything going wrong. So she didn’t even have that in the end. We stayed a while longer, then my dad asked if I was ready to go, and I said yeah. We drove to the place a friend of Mom’s lived, dad told me we were staying the weekend. Unusual, we never did this. And when we got in the house...

The VNA had called her not long after we left. Fifteen minutes... she died fifteen minutes after we left. And it still hurts - the thought that I should have somehow known to stay longer, to at least not let her die alone, far from home...

Thank God I’m typing this.

Not long after that, the trailer park went under because the landlord was a cheap bastard, and we moved to the other side of town. I started high school... trends held. I had a few acquaintances, maybe even something approximating a friend or two. But I was bullied a lot, not well liked, you know how it goes. Of course, it usually doesn’t go to the point that you have a kid a grade higher than you tell you right before graduation that the only reason he started pretending to be my friend was because he thought I’d go Columbine and didn’t want to die. Senior year, I ponied up the pretty penny for a yearbook, and when it came in I set myself a task. I’d get the same few jibes yelled at me every day, from every direction, almost any time I was in the halls. So I put names to the faces, listed them all, just out of curiosity, to see how many. There were 126 that did it at least once a week - of all grades. My school had a population that year of 1,996. That’s 6.3% of the entire school population. Most kids with bully problems just have a few really nasty ones. I had dozens.

So I learned to push other people away. Because I knew I was a target, and I knew why. Because I always believed them when they said they wanted to be my friend, right up until the punchline came in. I was too gullible, too trusting. I cut myself off from everyone, walled myself off from emotion and human interaction as much as I could. I retained a circle of people I thought were friends - each wound up betraying me in the end, of course. But as I’d been building up all those nice safe walls... I had failed to know myself or my enemy, and I have lost the battle now.

Because I am an inherently loving person. I grow fond very quickly. I trust very easily. I care very deeply. And only very recently have I even started to form bonds that aren’t merely based on my being useful, or momentarily amusing. I hope.

But I’m so god damned scared. I know I’m not human. Humans are a communal species, if I were a member of them it wouldn’t have taken me 27 years to find a genuine friend... much less have been so thoroughly rejected in the one way that most hurts. Because I’m a very affectionate person. I want to love... and be loved.

I know, it sounds absurd. Stupid, silly, childish. But I’ve seen it - two of my current adoptive family have it (my brother who literally saved my life - mote on that later- and his wife), and I helped two of my friends in college meet each other - far as I’m aware they’re still together some seven years on. And... it’s what I want. It’s what I need. It’s what makes me ache when I see it, what makes me cry when I imagine myself having it because it seems so impossible. I can’t even get a human to like me, and now I expect to be genuinely loved? What fucking hubris...

But, I was naive, and gullible. I found someone I thought cared. That I thought did love me. And that led to the Four Years War. My first relationship... nearly ended with my death. My now-brother literally saved me from a death as a homeless penniless bum 700 miles from everything I’ve ever known. And now, because of that, because of the gaslighting I went through... my ex always used to throw up that I don’t know what love is. I’ve never had a real relationship, I don’t know what it’s like. What it feels like. And I thought I did. Now I’m so fucking scared that she was right. I’ve barely ever even had friends, how the fuck do I know what love feels like? And now, how can I trust what I thought was love? I’m so terrified to try and get the thing I need most because it could turn out just as bad or worse. And what if I’m just too damaged by all this shit to be loved now? What if I’m too crazy, too mentally broken for anyone to ever tolerate me? What if everything I feel is a lie? God damn it I’m praying for true love while questioning the very reality of my existence. I’m just so scared. I just want one person. I’ve been so scared to say that out loud for a long time because I don’t want bullshit pity dates that wind up hurting both parties. But there it is: I want to love. I want to be loved.

But I don’t know if that’s possible. If it will ever be possible. If I’m too far gone... or was never even close to start.

#depression #depression posting

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ellaintrigue · 4 years

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Here is a word I don't use often: "evil." Frankly, because it's kind of an old, mythical sounding word, at least in my opinion. Now, I haven't seen much of my dad's side of the family in years but a couple of years ago two of my first cousins added me on FaceBook. There were spats over politics that I have since realized were petty, with me as the instigator. The rest of the family I stopped seeing when I was a teenager and started working. I just didn't seem to have anything in common with them. My aunts are nice people but I've always preferred my mom's side of the family, and my dad's mother was abusive towards him although he'll never admit it. He says that her splitting his mouth open numerous times when he was a small boy kept him in line. I cannot imagine punching an 8-year-old in the face...

All of my cousins (there's like 5 total) seem like family people with good morals and I was talking to one on a regular basis but I've officially reached the end of the road with her. My parents told me to block her but I'm a big girl and come to my own conclusions. She can stay on FaceBook, and we can send each other Christmas cards if we want because I'm actually pretty relaxed when it comes to it. But I cannot forgive.

In the first screenshot, a few months ago, she hits me up complaining about something my mom posted on FaceBook. Then she proceeds to imply mom could have prevented her current cancer diagnosis.

That was hard for me to swallow. Her saying that, not about testing. Everyone knows that if hey, cool, you get checked for cancer soon enough then you'll probably be okay. But that just isn't how life works or no one would die of cancer. When Cousin Charles and his wife died months apart from each other of lung cancer all I thought was how sad it was, not "OMG WHY DID THEY SMOKE OMG THEY SHOULD HAVE GOTTEN CHECKED SOONER." That line of thinking doesn't do any good.

My cousin's words hurt me, and I didn't want to repeat them to my mom because they would hurt her, but almost a month later, I did, because I felt mom had a right to know. My cousin argued with mom on FaceBook over politics, which I saw as harmless. Politics bring out the worst in people but if they want to go back and forth, then whatever. But then my cousin said this crap to me, then she started bashing my mom hard on FB in their discussions before I told mom what she said. So mom took her off of FaceBook since my cousin was mocking her and calling her stupid. (This cousin is in her mid-40's by the way.)

My cousin then proceeds to message mom asking her why she was unfriended and mom called her out on what she said to me. At this point my cousin tells my mom she thought my mom was so smart she knew to get tested for cancer. Mom cut her off totally and I was further enraged.

Now a couple of months later I hadn't forgotten those two attacks on my mom but didn't raise a stink. This cousin has been very kind to me personally. But then I told her and my mom that I was worried about my best friend because she seemed overwhelmed by life circumstances. Mom said it sounded like my BF needed some help around the house and with her kids, my cousin said "it's not your problem."

That rang in my ears... if you care about someone they're not a "problem" or not "your problem," you reach out to them just like how they're reached out to you to help you in the past.

I ended up pretty sickly and it turned out to be a pelvic infection. Which is my exact wording when I posted on FB after coming back from getting urgent medical treatment. I have 31 friends on FB but also don't mind opening up. Except when you message me saying "IS IT GONORRHEA?!" which is exactly what my cousin did. I just typed "uhhhhhh" and she says "the fucking asshole that didn't tell you!" Now, I'm a pretty non-judgey person and I've posted before that people can get STDs from long term partners, or even while being responsible, etc. But I've had gynecological problems for years and I was sitting there sick and tired wondering WHY the fuck my cousin would just instantly conclude that I have gonorrhea. And why/how the fuck would I have gonorrhea? (And for people as daft as my cousin: I don't have it. LOL.)

This interaction comes after she tried to hook me up with a drug addict for two months (she kept messaging me about him) and I got in it with her over that (I wrote about that on my last blog). She even admitted she didn't know he had a criminal record after the fact. She just thought the glowering, grey-skinned, toothless middle-aged grocery store stocker would be a good match for me. But, hey, maybe I shouldn't be so sensitive and defensive. I took a deep breath and told myself, "Ella, you need to calm down, she's probably not even making assumptions about your lifestyle. She's probably just gotten gonorrhea a lot from making love to methheads and was just trying to relate to you. Stop being so harsh on her."

So, I let that go even though I was starting to foam at the mouth at that point. Must. Not. Be. Petty. But, I have to think, if I shouldn't worry about my best friend since age 5 because she's "not my problem" then how is my health my cousin's problem? And if I got with a drug addict she suggested, then wouldn't he be my problem?

On Sunday my cousin messages me, attacking my mom again, which is the 2nd screenshot pictured. Again, totally random, I had just mentioned in my last blog that people thought I was fat. And I am, I write about anything. BUT HERE WE GO. HERE WE FUCKING GO AGAIN, JUST FUCKING BASHING MY MOM. At that point, as you can see, I straight out called her out and I'm just fucking done. Not blocking her but I don't want to talk. She can just exist and I wish her the best but here is where I use the word "evil." And she can read this too, but it won't hurt her like it hurt me when she bashed my mom for having cancer. Just leave me alone. I don't want to hear that messenger ding unless it's someone with nice things to say or a cute guy that wants to buy me ice cream.

You can call someone ugly, attack their politics, say their dog stinks, or tell them to jump off a cliff. And you shouldn't do any of those things but I think one of the lowest blows you can do is attack someone with cancer and judge them for how they handle it. To say they should have gotten tested sooner and to completely disregard their feelings and what they're going through is unforgivable and inexcusable. And she did it twice, with me, and with my mom.

This is proof that you can't pick your family, that you shouldn't open up to everyone, and a prime example of a toxic human. An evil human.

Now, I'm done ranting and have things to do. Those things are not smoking meth, crack, or shooting heroin and I'm not going to go contract gonorrhea, I am going to work this morning. Yep, I'm that boring. Peaaaaaaaaaaaaaaaaaaaaaaace the fuckkkkkk out.

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buckybarnesappreciationsociety · 7 years

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“I Can’t Do This Without You” Part 1

Summary: The Barnes family is shaken to the core by Y/N’s cervical cancer diagnosis. This series chronicles their struggles and after care.

Word Count: 1,767

Pairing: Bucky x Reader

OFC: Izzy, S.J (Steven James), Tony, Sam. Steve, Clint, Nat, Wanda, Bruce, Dr. Cho, Dr. Patricia Traver.

Warning: Discussions about menstrual cycle and cervical cancer.

A/N: Any form of cancer is devastating and I am NOT making light of anyone. I was diagnosed with a cancerous ulcer that spread to my cervix, uterus and fallopian tubes at 24 years old. The doctor froze the cells before they spread further. I’ve had 2 surgeries to remove the aforementioned female parts. The downside to having a hysterectomy is menopause. I experienced it at 24 and it was pure hell!!!!! To anyone who has a relative, friend, or themselves are dealing with cancer, I’m praying for their or your recovery.

Y/N Barnes became alarmed when her menstrual cycle became heavier than normal and coupled with excruciating pain. She didn’t waste any time making an appointment with her gynecologist and longtime friend, Dr. Patricia Travers.

What she wasn’t prepared for were the findings of the transvaginal ultrasound (TVUS) and CA-125 blood test. The findings shook Y/N to the core.

Cancer.... cervical cancer, stage 3. Y/N felt the color drain from her face and the air from her lungs. She started hyperventilating. Dr. Travers coached her through breathing exercises. After her she calmed down, Y/N sobbed as she held onto her friend like a lifeline.

At home, Bucky helped S.J. prepare for soccer practice. Sam volunteered to drop him off at the field.

With time to spare, Bucky turned on the t.v., grumbling about some reality show. Glancing at his phone, no call from Y/N. Of course, the first thing came to mind was HYDRA.

Noticeably upset, Bucky pressed speed dial #2 for Y/N’s phone, he practically lost it when Patricia answered.

“Pat, where’s Y/N? Why are you answering her phone?” The tightness in his chest restricted breathing.

“Hey James. Y/N is here in my office. Would you come down ASAP? We have some news and she wants you here.”

Already upset, Bucky hung up, running down the corridor shouting for Steve.

“Hey Stevie!!! I need ya.” Bucky bellowed.

Stumbling to his bedroom door, Steve was taken aback by Bucky’s urgency.

“Buck, what’s going on? Jeez you scared the shit out of me.” His disheveled hair indicated Nat was over.

Out of breath, Bucky nervously tried to explain the news he’d received. Shocked, Steve agreed to pick-up S.J. from practice and take him out for burgers and a chocolate shake.

“Thanks pal. I gotta get to Y/N. Just don’t say anything to S.J.”

Taking two steps at a time, Bucky ran to his car. Running a few traffic lights, his mind was a jumbled mess. “What the hell is wrong with my Doll?”

Coming to a screeching halt, the unsettled super soldier almost punched a hole in the elevator wall because it was moving too slow.

Finally reaching the 14th floor, he made a mad dash for Dr. Traver’s office. Once inside, the receptionist ushered him in the back, where Y/N and Patricia were waiting.

When the door opened, Y/N threw herself into Bucky’s waiting arms. Patricia thought it best to leave them alone. This was too much to fathom all at once. Y/N needed her husband for morale support.

Gripping his blue henley, Y/N found it difficult to form a sentence. “L-let’s sit down.”

“You’re scaring me doll. Please tell me what’s going on!” Tears welled up in his cerulean eyes.

Taking a sip of water, “I have Stage 3 cervical cancer Buck. Oh god, I can’t believe it.”

The salty liquid streamed down his chiseled jaw. Unable to speak, Bucky simply held his wife, as they cried together.

After 15 minutes, Dr. Travers entered the room, sitting behind her desk.

“I know this is a lot to take in, but there are options. We would do what’s called a radical hysterectomy and oophorectomy. The hysterectomy will remove the uterus and tissue fibers; the cervix and maybe an inch or 2 of your vagina. Also, your ovaries would be removed as well. After surgery, if we find anymore cancer cells, a low dose of chemotherapy will be administered.”

Bucky gasped as Dr. Travers showed them on a model of the female reproductive system what would be removed.

Shifting in her chair, Y/N held Bucky’s hand. “Pat, what will I become? I’m not having anymore kids, but I don’t want to feel as if I’m not a whole woman.”

“Y/N, you’ll still be a whole woman without your reproductive organs. After you’re healed, I don’t see why the surgery would dampen your sex life.”

“I don’t care about that sweetheart, all I want is my wife healthy and cancer free. I’ll be with ya through it all.” Bucky lovingly held Y/N’s trembling hand.

As Y/N gazed into Bucky’s’ eyes, her lip trembled, as she mouthed ‘thank you’

“Um doc, how soon will she need surgery?,” Bucky inquired.

“I’m not going to sugar coat anything. The sooner, the better.” Dr.Traver’s was forthright with her answer.

Inhaling sharply, Y/N mentioned Izzy and finals. “Izz is taking end of semester finals. We’ll wait until she’s home and talk then.”

“Alright. Today’s Wednesday. When will she finish her finals?”

“On Friday evening. James and I will talk to everyone at the same time.”

“I’ll wait for your phone call. Just know, this is serious. The sooner we get in and remove the cancerous cells, your chances will be higher to avoid chemo.”

Standing from his chair, Bucky thanked Dr. Travers. Helping Y/N steady herself, they thanked their friend and headed towards the car.

“I love you so much James. You’re home to me.” Y/N held Bucky’s flesh hand.

“Dollface, I’ll be right by your side through all of this; so will the team.”

Wiping her face, “How are we gonna handle this? Everyone needs to know.”

“What about a family meeting? Izzy and S.J.’ll need a strong support and they have that. How about Saturday afternoon?” Bucky nodded ‘yes.’

When Bucky pulled up to the Tower, he and Y/N attempted to calm themselves for the sake of S.J. and the team.

From the garage to inside should be an easy 3 minute jaunt. To Bucky and Y/N, their steps were marred by today’s report from Dr. Travers.

The weight proved heavy on Y/N’s shoulders and her tears flowed like heavy raindrops. Bruce, Nat, Wanda, Clint, Tony, and Vision were in the common room debating some stupid game show.

Wanda felt pain radiating from Y/N. She stopped talking and pulled her into a hug. Everyone else didn’t know what to make if the sudden shift in the atmosphere.

Tony quipped, “Hey Popsicle, what’s going on?”

Sitting on the plush sofa, Y/N and Bucky prepared to tell the team. The pain evident on Bucky’s face, he held his wife close.

“I have Stage 3 cervical cancer. I’m having surgery before the end of the month.”

Nat didn’t try to stop the tears; neither did Tony and Wanda. Bruce and Clint were numb.

Y/N laid out what type of surgery she’d have and impending chemotherapy if all the cells aren’t removed.

“Listen, we don’t wanna tell the kids yet. Izz is taking finals and S.J. needs to focus on his studies and soccer game. I’ll tell Steve and Sam, just not right now.” Bucky choked back tears.

Tony was adamant about ensuring Bucky and Y/N will have everything needed for after care. “You and Bucky concentrate on the surgery. I’ll handle after care. Whatever it takes you’ll have. I’ll have contractors come in and turn two rooms into a medical suite, complete with chemo equipment and anything else.”

Y/N pulled Tony into a hug. She and Bucky were overwhelmed by his gesture.

Tony and Bruce excused themselves and headed to the medical bay. Dr. Cho was briefed. She sprang into action researching all Y/N would need after surgery.

Clint, Nat, and Wanda pulled Bucky and Y/N into a group hug.

Wanda pulled Y/N into a hug. “Me and Nat are here for you always.” Nat nodded ‘yes’.

Clint patted Bucky on the shoulder. The distraught super soldier nodded as he and Y/N headed to their apartment.

*************************

Y/N sat on the sofa, patting the space next to her. With a heavy heart, Bucky joined her.

“James, please hear me out. In case something hap-” Bucky abruptly stood, covering his ears.

“STOP IT!!! I’M NOT GONNA LISTEN TO THIS! WE’RE GONNA GROW OLD TOGETHER. SEE IZZY GRADUATE COLLEGE AND S.J. GRADUATE HIGH SCHOOL!!”

Reaching out for his hand, Y/N tried to calm Bucky down. “Baby, please. I need to get this out. Come sit with me please.”

Bucky slumped down on the sofa, holding his head. He openly sobbed. Y/N rubbed his back. “Doll, I wouldn’t be able to do this without ‘ya. It’s unreal baby. You can’t leave me. Please don’t leave me,” he begged.

Laying his head on Y/N’s lap, she gently ran her fingers through his hair. “Babe, IF it happens, Izzy and S.J. will need you more than ever. Please try to stay strong for them. Please James, stay strong for our kids. Promise me.”

“I promise dollface.”

Y/N heard S.J, Steve and Sam return. Bucky went to the bathroom and washed his face. Trying to hide behind the pain with a forced smile.

“Hey mom, guess what? Uncle Steve and Uncle Sam took me for a burger and chocolate shake. It was so cool. We had fun!”

Bucky greeted S.J. with a hug. “Hey buddy. Did’ya have a good time after practice?”

“Yep. I’m full. Uncle Steve ate more than me and Sam. You should’ve been there.”

************************************

Sam didn’t say anything but he knew something was off. “Hey Buck, wanna join me and Steve for a drink or three?”

“Go on sweetheart. Maybe you can find where Thor hid the Asgardian mead.” Y/N stood up and kissed Bucky.

Pushing them out the door, Y/N turned her attention to S.J. He was so excited about soccer practice, his next game and spending the afternoon with his uncles.

Sam, Steve, and Bucky went to the rooftop to talk.

“Hey Barnes, what’s going on man? You look like you’ve lost your best friend.” Sam wondered.

“Y/N has Stage 3 cervical cancer.” Before he could finish, tears rolled once more. Bucky had no idea he cried so much! He was devastated.

Sam was enraged. “Shit shit shit!” His hurt led to anger. He flipped over 3 chairs and a table.

Steve put his arm around Bucky as they cried together.

Once the anguish died down, Bucky asked his friends not to mention it around S.J. When Izzy comes home for fall break, they’ll get everyone together and tell them.

Steve and Sam vowed to be there for him, Y/N and the kids.

Life is a precious commodity, so cherish it while you can. Tomorrow’s not promised to anyone!

@omalleysgirl22 @rebelslicious @pegasusdragontiger @magellan-88 @shy2shot @papi-chulo-bucky @bolontiku @beyondbarnes @goodnightwife @this-kitty-has-claws @not-moose-one-shots @buckyohh @captnbarnesrogers@sgtjamesbuchananbarnes107th @supersoldierslover @irene-rogue-adler @3brosangel @promarvelfangirl @theimpossibleg1rl

#this is serious #family and friends #support network #praying for a cure #i'm praying for you

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captainjackfuckingbarakat-blog · 7 years

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So I’m working on an Ian/Mickey fic, but refuse to post it, until I’ve got a rough draft completed. Now, I’m not very far in it right now, but with college right now, motivation dwindles. So, I thought I’d post a snippet (ok, not exactly a snippet, it’s a few thousand words long...), and hopefully get some feedback on it.

Enjoy!

Felicia’s hand was flung in front of her, the diamond on her finger glinting with the sunlight beaming through the window and reflecting off it. Ian dug into the depths of his memory, for any recollection of a boyfriend, but he found none. He’d known the fiery auburn haired girl for three years – their first meeting definitely left them a story to tell. Despite the length of their friendship, Ian could only remember Felicia single, even last night she’d been eagerly grinding against some guy. “Oi, don’t be thinking too hard there.” She spoke with a thick British accent; she’d only moved to the states three years ago, shortly before meeting Ian, and she did nothing to cover her origins.

“You’re just telling me about this now!” Ian seized her left hand, eyes glazing over the rock that took up half of her finger. Felicia had been a mysterious woman from the beginning, and had no problem constantly throwing him for a loop – like the ex-boyfriend she’d left behind with their infant daughter when she was 18.

“He only proposed this morning. Sorry I decided to have celebratory sex with my fiancé to tell your sorry ass.” Felicia yanked back her hand, flashing one more adoring smile at her ring finger before shoving it into the pocket of her black romper. “Oh come on, I’ve told you about Mickey, dark and handsome. Haven’t I?” Felicia threw a gob smacked hand to her forehead and her face flushed. “Ey Ian, forgot to tell you, there’s this bloke I’ve been seein.”

“Well jeez Felicia, surprised you didn’t wait until I was walking you down the aisle.” Ian had always been one to tell her about his latest fling, however he’s pretty sure she stopped paying attention at guy number 5, and that had only been a month in. He used to believe every guy would be the one, but after a harsh break up with a guy he’d dated for a year, he jumped off that train.

“Who says you’re givin me away?” She put on a serious face, arms crossing across her chest in dismay, but they both knew that unless she was having the wedding in London, Ian was the only one that fit the job. Felicia’s mom had passed years ago, and her dad was barely hanging on since then, cancer eating away at his lungs. Her only brother stuck around to care for their father, while she’d run away at 16, and only went back for her mother’s funeral – he hated her. “I wanted to wait till it got serious. It got serious, then I forgot.”

“Probably a few too many lines of coke. I told you that shit isn’t good for you.” Ian tutted his best friend – she was a party girl, but Ian figured out how to maneuver around it. He always let her do her thing, and did a good job at standing up to peer pressure. He had a lot more restraint than his older brother Lip, who was 24 and already a raging alcoholic. Ian was past his party days, and had enough on his plate these days without the booze and drugs plaguing him.

“Good thing my fiancé don’t care how dumb I am. He loves me regardless.” Felicia flashed her ring again, if only so she could stare longingly at it, as if the man who’d given it to her would appear upon her wishes. “Tomorrow,” she pointed adamantly at Ian. “You’re taking me out for a celebratory drink.”

“It’ll have to be an early drink. I go in at five, won’t be off until well after midnight.” Ian’s work hours were shit, and the job mundane. He crossed his arms all night as he worked as an intimidation technique at the fairytale, a gay club in Boys town. That’s how he’d met Felicia, a rowdy patron who was way too drunk, and he hadn’t taken a single step up the latter in three years. At least he still have a steady flow of cock, his one remaining vice – he’d even given up cigarettes along the way, allowing his lungs a break from nicotine and weed.

“Pick me up at two for an afternoon cocktail.” Felicia shook his hand as if that were normal behavior – what, were they setting up some sort of business deal – the two friends had been more of huggers. “Tonight, it’s back to my fiancé, so you’ll have to party hard without me.” For Ian, that meant one beer in the privacy of his crappy apartment in the heart of Chicago, streaming Netflix through the night.

“So, you have got to tell me about this guy.” They had been at the bar for all but ten minutes, with Felicia trying to distract him with crazy coworker stories – she worked reception at a law firm. The girl was already sipping her way through her second glass of whiskey, while Ian had taken a few sips from his Coca-Cola. The bartender had given him a dirty look when he turned down even a beer with minimal alcohol content. He was ready to find it a maddening bar like in the movie Coyote Ugly that would spray him down with water for his choice. “Come on, what’s his name again?”

“Mickey,” Felicia said with a slap on his shoulder. “He’s the one.” She had always claimed not to believe in love, always cynical about the future, which likely explained why she’d kept this quiet. Boyfriends had only fucked her over in the past. “He’s fucking short, only an inch taller than me, but he never complains when I wear heals. He’s got these stupid tattoos on his knuckles, but somehow I find them endearing.” She went on, and Ian admired the look of love glowing from his best friend. He used to dream about something like that for himself, before he learned that no one would really care about a lunatic. He thought he’s had it with Jacob, but a year into their relationships, and Ian’s meds went haywire, and he was committed for a week. He returned to an empty apartment.

“I think I’ll ask his sister Mandy to be my Maid of Honor. She’s a kickin girl. Maybe you can be a bridesmaid! We’ll deck you out in a pink frilly dress.” Ian rolled his eyes, because no matter how gay he was, he wouldn’t be caught dead in a dress. “We’ll make you look so good, Mickey might even take his eyes off me and find you so attractive he leaves me at the altar.”

Ian waved his hands in refusal. “I don’t want your straight fiancés affection.” There were enough guys that wanted to fuck him not dressed as a girl. He didn’t need to dress in drag to attract men’s attention – oddly enough, gay guys still seemed to dig that.

“Whatever. You don’t know what you’re missing. He’s got a great cock. He’d tear your ass apart.”

“Oh come on, I don’t need to hear about your sex life. Now I’ll be staring at his dick when I meet him.” They both knew that Ian was a top, not gold star, he’d fucked around more than he wanted to admit sometimes, but straight cock in his ass was repulsive. For all the guys Felicia never told him about, Ian told her in gory detail about the guys he’d fucked – she was the only person he ran to when he bottomed for the first time without getting paid for it. She always drowned him out with alcohol.

“Who ways you’re meetin him? You ain’t even invited to the wedding Ian Gallagher.” Felicia waved to the bartender for a refill on both of their drinks, even though he wasn’t quite halfway through his soda. “Fine!” She cried as if Ian had been begging her for the last second of silence. “You can meet him. But no acting all high and mighty just cause you can attract classier guys than me.” This fiancé of hers was Southside, one of the few things he managed to catch while absently watching her lips move. Ian had been born and raised in the Southside of Chicago, but ran and didn’t look back much after he joined the military at 18 – even if that hadn’t worked out for him.

“Oh come on. That’s a low blow. Just because I hate my family doesn’t mean everyone from the neighborhood is like them.” Ian was 23, not some baby that didn’t understand how the world worked. He had his qualms with his family, but kept it between them. Felicia knew as little as he could get away with telling her about the other five Gallagher kids, and the only thing she knew about the deadbeat parents, was that Monica was dead. “I’m sure he’s a great guy.” He better have been good to Felicia, because she never deserved an asshole for a husband.

“I’ll set something up when he ain’t working. He works construction; it’s fucking shitty, but as least he makes money.” Ian understood; before he’d gotten the job as a bouncer, he’d sifted through some pathetic jobs that paid the bills, and allowed him to live as far away from his siblings as he could. He hadn’t wanted to chance running into them after he’d left for good when he was 19, upon his diagnosis of bipolar disorder. They looked at him the way they looked at their mom – he was fucking insane.

“Mickey will hate you. He thinks straight edge guys like you are pussies. Guess he’s not exactly wrong, with you at least.” Felicia knew better than that. Ian had a lot of demons that followed him, but mostly his mental illness; it made him weak in too many ways. It stopped him from partying along with his best friend, and left him home most nights. “We’ll have to get you to help with the wedding, god knows I don’t know shit.”

“And I do?”

“Duh, you’re gay.” Ian had never been a stereotypical gay man, but that didn’t make him any less of a fag. He’d never fucking paint his nails, or where make up. Ian would rather spend a day bulking up at the gym; all this after hiding his sexuality for a good chunk of his life. In the Southside, with all the uneducated bigots, racists, and homophobes, it was a death sentence for a gay man to even walk down the street.

“Hey, shut your face. You’re on your own with the wedding. I’m just showing up to make sure you don’t trip on your dress. Wouldn’t want to make a fool of yourself on your wedding day, in front of your husband to be.” Ian finally managed to finish off his coke and put down money for both of their drinks. “Good talk. Can’t wait to meet the guy that puts that smile on your face.” He hugged her tightly as a formal goodbye, and headed out into the burning Chicago cold, and his beat up red Ford that barely ran anymore.

Felicia and Ian hid together in a dimly lit corner booth, both drinking a beer, albeit Ian was a lot more cautious with his beverage. The brit had insisted they go to a steakhouse, and fill up on a twenty-five ounce steak, and one of each of the deserts for the three of them to split. The best friends saved eating out for special occasions, so that when they did, their bill was well over one hundred dollars, accompanied with a twenty dollar tip. It was just like when he was a kid, and Fiona would run into a bit of extra cash – usually they stuck with buffets. The restaurant was far from fancy, but it was their go-to place, and a couple waitresses recognized them – they only went about four times a year, but they’d been doing so for three years now, and the staff seemed pretty consistent. The booth they sat in was busting apart at the seams, and Ian pressed himself to the wall to avoid sitting on the slash across the middle of his side.

“So, is Mickey just imaginary?” Ian pointed to the empty spot beside Felicia, and the third, unmoved menu. They’d waited an hour, and his best friend insisted they wait to order, because he promised he’d come, and Felicia still had faith in him. So Ian filled up on the bread the waitress kept bringing buy, and finally ordered himself something other than water. He’d done his best at attempting to not point out Mickey’s obvious tardiness, how bad of an impression Ian was getting of the guy.

“He’s jus’ runnin’ late. He’ll come!” She was adamant about it, and Ian had no choice but to shut up and sit back with his nearly wasted friend. Felicia was moping, but refused to lose hope on her fiancé, and ordered herself another drink every time the waitress came back. There was a full glass of beer at the seat beside her that she’d ordered along with her first drink, but she left it, because he was fucking coming. Felicia pulled out her phone as her mope broke out into a fattening grin. “He’s jus’ parked. I told ya ‘e was comin’.” He was glad to be wrong.

Ian hadn’t even seen a picture of the guy, so he hadn’t realized it was Mickey headed their way, until he slid in beside Felicia. His arm fell over her shoulder, and Ian recognized the knuckle tattoos, the only physical attribute she’d given him – this hand read fuck. Their lips slotted together in a brief greeting, and Felicia followed it with a hard punch to the shoulder. “That’s for bein’ late dickhead.”

“Fucking bitch.” There was a small amount of scruff on Mickey’s chin, and his mop of hair was black, with a hint of something lighter there, and those eyes were a stunning shade of blue – Felicia’s dreamy talk hadn’t done them justice. “I’m sorry,” he spoke softly and ran his thumb over her cheek. He spared a glance across the table to Ian, directing his apology to the both of them. Mickey kept his right arm securely around Felicia’s shoulders, but reached his left out for Ian to shake. U-Up was scrawled across the four fingers in the same unsteady spray of unprofessional ink. “You must be Ian. This one talks about you a lot.”

The handshake was strong, but not threatening, like he’d gotten from other guys when he’d befriended their girlfriends – if Ian was straight, he wouldn’t have a hard time stealing someone’s girl, the amount of times he’d gotten punched assure that. “You’re Mickey,” the redhead pointed out. “Can’t say I knew much about you before, but she’s talked non-stop these last few weeks.”

“I wasn’t sure she’d ever let me meet you. So, what is it? You don’t seem like someone she should be hiding.” Mickey didn’t say a word when he picked up the lukewarm beer, and finished it in a few long gulps, slamming it harshly back to the table and motioning his finger at someone walking by for another. Pothole duty must have really done a number on him. “I thought my family was crazy, but this girl’s just as batshit insane.”

They put their orders in five minutes later, and another round of bread was brought around to their table. Ian laid off this time, but Mickey was quick to slather butter on a slice and shoved it down. “This bitch packed me an apple for lunch, can you believe that. How is that supposed to stop my stomach rumbling while I pour concrete into holes? I’d get it if she was a health nut, but an apple is like two fucking calories and no protein.”

“If you wanted a cook, you shouldn’t be marrying her.” Felicia had tried to make Ian a can of soup one time when he was low – she hadn’t realized that it was a lot different than the flu at the time. She got him moving pretty quickly when his microwave exploded, and she’d tried to heat it up, can and all. “She’s also a slob. Glad it’s you she’d marrying and not me.”

“Doesn’t sound like you swing that way anyways.” Felicia had always mouthed off about how much a fag Ian was, which usually led to her attempting to set Ian up on dates. He wondered if Mickey had almost been the culprit of the setup, before she realized he was straight and falling head over heels for her. “Must’ve been hard. Southside ain’t the breeding ground for pride parades.” Ian wondered what had been done right for someone that was so obviously dragged deeply into the drugs and violence of that neighborhood, to turn into a guy that could casually sit across from Ian. He still didn’t feel safe walking in his own neighborhood without a knife in his pocket – everyone knew that the redheaded Gallagher was batshit crazy and gay, because the drunks liked to talk.

“Did you get out?” Ian wasn’t doing much better than his siblings, but he could at least say he managed to move a few blocks away, and officially out of the Southside, even if his roots were still bred in his bones. He avoided that old rickety house on North Wallace, and the memories that dragged with it. The last time he’d gone home was when their mom died, otherwise he made everyone come to him.

“Kind of. Spend a lot of time back there. My sister’s still there, with our older brother, but I don’t really live there.” Ian recognized the pain their upbringing instilled on everyone, and they could easily swap war stories. They could decide whose parents were worse – he knew Frank and Monica were tame compared to others, even with both of them fucking off all the time, the drugs, and the bruises Frank occasionally gave Ian. “Of course, this girl had her life set with a rich daddy in London.”

“My father’s money doesn’t say shit about me,” Felicia quipped – she’d never gotten a penny. Each person at the booth was equally broke, despite her background. Felicia had ran off at sixteen, and had only seen her father a handful of times since. “In fact, thing we might have to dine and dash.” They’d done it once, but Ian had felt so guilty, that he’d gone back and left a hundred dollar bill on the hosts’ podium, because he’d had the money to pay. It was a lot different from when he was ten, and Frank and Monica took the five kids they had at the time to some fancy restaurant. Their mom had just come back, after she’d left five years ago, and the group of them obviously didn’t belong – should’ve been kicked out right away for their appearance, because they were definitely too poor to afford it. Frank had ushered him, Lip, and their five year old brother Carl through a window in the men’s restroom.

“Need I remind you, the cops hate me enough,” Mickey announced, easily dismissing Felicia’s possibly serious idea. “Southside, man. The Milkovich name is akin for trouble.” The last named sparked familiarity in Ian, not that he remember any of them, except maybe the father.

“Any relation to, uh…Jerry?”

“Terry,” Mickey nodded. “Afraid to say I’m his blood. I’m his son.” Ian didn’t remember much about the guy, but Ian had seen him hanging around the Alibi, and Frank slurred about plenty of their fights, Monica might have fucked him too. Kev told horror stories about the different shenanigans the Milkovich patrons had gotten into, none of them the innocent childish type.

“Seem like a handful,” Ian nodded in sympathy, but didn’t spill into the dramatics about their asshole fathers. Frank was a pathetic drunk that left his oldest daughter to raise five kids, and Ian would never forgive him. Even if Ian had found out that his biological father was one of Frank’s brothers, rich and everything, the real dream for anyone that grew up like them. Ian had learned of this when he was fifteen, and much to Lip’s dismay, he refused to confront his father, because he already had his family. Ian Gallagher was never one to take the easy way out. “So, you were unlucky enough to fall for Felicia,” Ian commented with a breathy chuckle. “Are you sure you know what you’re getting yourself into?”

“Couldn’t ask for a better girl to spend my life with.” Mickey’s right arm had still been comfortably around Felicia’s shoulders, and he squeezed her close as he gushed about her. “I’ve lived with a girl like this one all my life. Guess it was just a test run, so I was ready for the real thing.” Mickey seemed genuinely happy, and it shown in the way his smile sparkled in those ocean blue eyes, and his face split as he let out gentle laughs. Everything told Ian that that was the kind of relationship he’d been dreaming of since he’d understood what it meant to be in love. He was glad Felicia was getting her fairytale ending.

The arrival of the food halted conversation, as the couple seemed starved. Ian had made the mistake of filling up on the complimentary bread, and instead pushed his food around while participating in the conversation between bites. He laughed along with the jokes, and hung off Mickey’s childhood stories, sharing some stupid comments of his own. Nothing was really serious at the table. Ian knew as soon as Mickey stepped in, the dynamic between them would be changed, and they’d now be a trio. It wasn’t something he was ready to give up.

Ok, if you made it through that, please shoot me a message, or reply to this post. I’m just looking for either reassurance that it’s good, or ways to improve.

#gallavich #fanfiction #my writing

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eds-zebra-warrior · 3 years

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2021 Ehlers Danlos Society Awareness Month (Day 9 Prompt: Inclusion)

Inclusion is a difficult topic for me as it's very difficult to feel included. This actually comes hand in hand with discrimination, segregation and inequality, especially being someone with EDS who can’t walk. When it comes to family, I can go into my own house and into my neighbor's house and that's about it. I grew up in the invisible illness community, eventually making me part of the rare disease community. As my symptoms progressed and I was paralyzed, becoming a permanent wheelchair user, then fell into the visible illness community. I will explain my lack of inclusion not only among the community, friends and family but also exclusion I face within the medical system and law enforcement.

I have been excluded by all outings and holidays by my extended family. My aunt likes to have holidays at her house and had a wheelchair ramp installed when her mom got older. Not long after the passing of my grandma, I was paralyzed, going into a chair. Being in a chair and my aunt knowing I cannot walk soon after removing the ramp from her house with little to no consideration of my needs so now when she has holiday dinners at her house I cannot go. I brought up the ramp once and she said “Well I didn't think about you” then later I realized how hurtful and mean what she said was so I sat down asking questions like “So you can't walk at all? “Have you ever tried to see if you can stand up?” “Well what about physical therapy?” “Well, I went to physical therapy when I had cancer and it helped a lot so I don't know why it didn't help you.” Which honestly was even more hurtful because I am not even a candidate for physical therapy after being paralyzed during physical therapy.

With cancer going rampant in my family somehow when family members ask about me and how I've been, they somehow seem to turn the conversation into cancer. “Trust me I know what pain is, I had cancer and if you ever get cancer you will learn what real pain feels like.” of from those older than me saying “You're too young for pain, Wait till you’re my age, then you’ll know what real pain is”, failing to even research EDS, Multiple Neuropathies, Complex Regional Pain Syndrome or any of my other conditions. The McGill Pain Scale has recently been challenged with a study done on a cohort of EDS patients. It was found that EDS is more painful than Complex Reginal Pain Syndrome which originally took the top place on the chart as the most painful condition with Cancer pain hitting around the mid range area of the scale. Some tend to downsize EDS and make it sound like I’m just a wimp for needing medication for my pain. I always hear things like “Me and my daughter were sick and we are both doing great now. Why aren't you getting better? Again, this relates my condition to cancer and other long term conditions that are a lot more common and have treatment and/or surgery that can put them into remission.

EDS has no remission. It doesn't magically go away. I have a gene mutation and as of now, you cannot repair a broken gene so this is forever. There is no remission but society is raised to believe cancer is the worst thing a person can ever go through and cancer is also one of those conditions where there are two outcomes. You go into remission and get better, living life normally or possibly on several meds to keep you functioning well, with the exception of younger children or some adults who have organ systems permanently damaged by chemo but even then they are much healthier and have a much more normal life than they did with active cancer. There's also the other side of the spectrum. You die. There are so many conditions that, depending on the type of cancer or hormonal mutations can easily be much worse than cancer leaving people much sicker than chemo patients but with no chance of remission. Imagine being on chemo for 50 years straight.

I have learned to hate the discussion of cancer when others compare pain and symptoms because many with chronic and/or rare diseases like Ehlers Danlos, Lupus, Muscular Sclerosis, Lateral Sclerosis, Rheumatoid Arthritis, Osteogenesis Imperfecta and many more are also very dangerous, have a lot of serious symptoms and comorbidities, risk the person's life and can very well cause more pain or more systemic symptoms than cancer. I am not saying cancer is not important, I am just saying people with these conditions are also compared with people who have cancer with most people who do this not knowing anything about our condition, just going off of the assumption that what we hear about most in the media, what has the most fundraisers and financial backing and what has the most attention has to be worse. Many more will get offended if you explain or give them information relating to the pain levels found in EDS mad that you would ever compare your own medical condition to cancer even after they just did the exact same thing by invalidating your pain and saying something like "If you think you're in pain now you should experience the pain that comes along with cancer. Now that's real pain" Its as if its okay for them to compare but not you making it automatically wrong for you to stick up for yourself when they try to invalidate your pain. The worst part is when they do this day in and day out without even noticing they are doing it. It gets exhausting and frustrating when someone is always trying to tell you why you are weak and spread the misconception that all cancer patients are much sicker than these other conditions, downgrading you. This leads to a lot of people giving unsolicited medical advice, telling you all the reasons why you aren't getting better knowing nothing about your condition so it really does go both ways and gets old to hear.

Another issue I had with inclusion was when my cousin got married. I have food allergies and couldn't eat anything they were serving. At the time I was a teenager and couldn't drive so my mom told my aunt she was going to go to Wendy's and get me a baked potato because I needed to take my medications and needed to take them with food. We were at the reception and next thing I knew my aunt was literally screaming at the top of her lungs at my mom about how she wishes my dad had never married her, she cant stand her and I’m a spoiled rotten little brat. My mom kept trying to get a word in telling her I have food allergies and can't eat what she has so it has nothing to do with being spoiled and it's not that I don't want what they are eating and honestly would probably rather have what they are eating but that I can’t because before my diagnosis gluten put me in multiple organ failure. My aunt was yelling about how she will not take my mom leaving and coming back and me eating Wendy's at their beautiful wedding and continued saying, if I’m hungry enough I will eat what they have and she needs to quit spoiling me and allowing me to have a different meal than everyone else was eating like I was a picky little kid instead of someone who if I ate what they were serving I can go into organ failure or anaphylactic shock. If she didn't think a Wendy's baked potato fit into her daughter's wedding décor scheme she would have really not been happy to have an emergency squad backed up to the door, a gurney and a bunch of paramedics so my mom, myself and my dad didn't understand why she was making such a big deal out of it. My dad then told my aunt we are going to leave and apologies to my cousin for leaving the reception early. After he did this my aunt started calling my mom and I derogatory terms still yelling while my mom was simply talking and trying to keep it quiet so it wouldn't be a big deal but she started calling me and my mom derogatory names and didn't talk to my mom for two years all over a baked potato and my food allergies.

Outside of the family also have little access to inclusion as I have not one friend with a wheelchair ramp or no steps going into their house so zero access to visiting friends as well as family. The lack of understanding crosses over to friends as well and I have lost most of them. I’m not the best when it comes to visiting friends as my health is so unpredictable and many people take this as me being flakey or not wanting to visit when most of them knew how timely and never canceled on them when I was healthier. I also had two friends who used me and manipulated the situation to make it sound as if I was the reason we never hang out. One of these people, she and her husband did a lot of traveling and it seemed like every time she was out of town she would contact me and ask if she and her husband could come visit me when they came back. I would agree and when she was back in town she would usually ignore my messages until a day or two before leaving again and say “I wish you would have said something sooner. We’re packing up now and about to leave to go to Florida now. They would leave and she would message me saying they were on a Disney cruise but when she comes back they wanted to visit me if I was up for it. Again she would either not tell me when she got home or I would message her that day or a day or two later telling her if they want to visit it's fine with no response and no response until right before they were about to leave again saying something like “Oh, well we're about to go to California. I wish you would have let me know sooner, not acknowledging the message was originally sent a week or two prior. When I finally asked if they really wanted to visit or not and what was going on, she then responded saying, well every time I ask if you want to hang out, you never do which was far from the truth since she would only talk about visiting when on vacation or while packing to leave the state again.

Another friend of mine since high school did something similar. She would call or text me and ask if I wanted to hang out the next day and of course sometimes I said no but a lot of the times I said sure because it was something low key like she would come over here to visit or just meet at the dog park or something. If I said yes she would say “I know you have good days and bad days and your health can change so if you are still up for it call me at 10:00 in the morning and let me know what you want to do. Well 10:00 am would come around and I would call her and say I was up for hanging out and she would say “well, I’m actually at my sister in laws now so can we do it another time” another time she would call and tell me if I’m up for it call her around noon and I would call her at 11:30 or so and tell her I’m up for it and she would say “Oh, well I didn't know if you would be up for it or not, I actually took my daughter to the park so we will have to get together another time.” Next time she would call me that morning and tell me she was going to be in my area and asked if I wanted to meet her for lunch. I would agree and she said she was going to take a nap and to call her at noon. I would call and she would say “Oh, well I’m at the mall with another friend, can we meet up another day”

Don't get me wrong, she was like this before I got sick and when we were kids where she would cancel a lot but when I got sick and she was calling me at least once a month to hang out and after two years went by and every single one she canceled out on me to hang out with another friend or go somewhere else and only two of those were because you had a doctor appointment or something and declined on your own there's a problem. I asked why she didn’t seem to want to hang out and she said “What's the point because every time I call you say you're not up for it. When I only said I wasn't up for it twice and she canceled more than 20 times in a row, having no problem telling me she was hanging out with a friend from work or someone else making plans to replace the plans she made with me so this is another struggle I have faced since getting sicker.

The people I used to think were my friends who obviously don't like me because I’m boring and can't go out and party, run around the mall for 8 hours or go to the fair and ride all the rides with them but now can only handle the low key stuff like lunch, going to watch a movie, stay here and play cards, go to one of those paint with a friend things or something low key like that and I know the fact is that they don't like these low key activities and think I’m boring to hang out with but don't want to tell me this and I truly believe they don't want to admit to themselves that they don't like me anymore since I’m now disabled so they try to push the blame on me and throw it into the pile of problems I already have lol so friendships just don't work out well for me either.

Now that we have covered inclusion with family and friends let's talk about the community. I have always said, even before I was disabled that the communities that face the most inequality and discrimination are the communities you never hear about when discrimination and inequality is brought up. The Deaf Community, the Disabled Community, the LGBTQ+ Community, the Rare Disease Community and the Invisible Illness Community are the communities who I believe have the most severe lack of inclusion, face the most discrimination, face the most prejudice, endure the most physical, verbal and emotional abuse and have the fewest rights many take for granted. Black Lives Matter has really made me realize how severe these disparities are. Being in a chair I can’t just go to a small town. If we are going on a trip to Cleveland Clinic or the University of Toledo and we are driving through a small town with a lot of small, mom and pop businesses I can't stop and shop at one of those stores. If I have to go to the bathroom they don't have a wheelchair ramp going into their building so not only can I not go into a single store but I am unwelcomed by the entire city.

With ADA being signed in 1990, 21 years later the Columbus Police Department says and I quote “ADA laws aren't real laws and shouldn't be treated as such. Our own police have left me outside on the second coldest day of the year in January when two cars parked illegally in front of both handicap curb cut ramps going down to a parking lot. Instead of enforcing these laws and punishing those who illegally parked in front of these ramps or taking the time to send an officer out to help get me and my chair off of the curb they told me it was my problem and though every building in the strip mall had closed down that it was my responsibility to sit out in the cold with pure autonomic failure and the inability maintain my body temperature indefinitely until someone came back for their car which resulted in me going into hypothermia.

With BLM coming to the surface the disabled are seen as weak and also are essentially the punishing back for the black community now just because we are seen as weak and easy targets to take their anger out on. I have been through the illegal parking issue time and time again. Another time a black man parked in front of the curb cut. My dad kindly asked him to move his vehicle and he told us we had to wait while he finished his conversation with his friend which took about 20 minutes. We were in a bad area of town and my dad and I were the minority so there wasn't much we could say or do or we would be seen as the ones who were racist. This 20 minutes was one of the scariest times of my life as a woman overheard my dad asking him if he would mind moving his vehicle so I could use the ramp. She came up to me and pointed to my dad who is a senior citizen, asking why he can't lift me up in my chair and off of the curb. This area was old and fan down so the sidewalks had been done multiple times so the curb was quite high. It was about 10 inches up from the parking lot so not a little bump I can just back off of and I was 112 lbs., sitting in a 39 lb. wheelchair with a 17 lb. service dog and I didn't understand what she was talking about because she couldn't possibly mean for him to lift all of that weight himself and put me onto the ground plus the wheels spin and even with the wheels locked the wheels will still move so you need two people to lift a person in a chair without flipping it. Anyhow, kind of confused I said “No, I don't think so”

She then went off yelling about how I'm an overly entitled white bitch who thinks she can get whatever I want handed to me on a golden platter. My family probably owned slaves and how I have a lot of nerve to ask a “N word” to move their car so I can use a ramp that belongs to the community and doesn't have my name on it. How he can park wherever he damn well pleases and white bitches like me need to be shot thanking we can get all our NEEDS met when we don't even know what needs are because they “N words” have had to go without their needs for 400 years now calling me multiple swear words and derogatory terms as well as saying multiple times that I need shot. After about 20 minutes of her in my face screaming at me during Covid and me saying please, I have a compromised immune system or I’m sorry, I just can't get to my car the guy finally said he would move his car for us to leave. It was terrifying but things like this happen all the time.

Another incident happened in Aldi near the beginning of the pandemic. The checkout line was massive and stretched ¾ way down the second isle. And there was one of those electric pallet jack things they use that can't be moved because you need a key to start them on the right side of the isle so no space to get through I just waited at the back of the line until it got past the pallet jack so I could get by which wasn't an issue because the line always moves really fast at Aldi and there were only two people with carts in line behind the pallet jack so I got in line behind the last woman in line and locked my breaks. I put my smaller service dog on my lap because the isle was really crowded and I didn't want her to get stepped on.

Next thing I knew there was a black woman coming around the corner yelling everybody move, get out of my way slamming her cart into the back of my nearly new $7000 wheelchair and $7000 smart drive so hard that she shoved me in my chair, with the wheels locked about two feet forward and my foot plate into the ankles of the woman in front of me and kept pushing her cart yelling at me to move. I was still shocked at what was happening so all I could do was say “I can’t” because of course the line ran beside the pallet jack which couldn't be moved so there was only about 4 inches between the edge of the fork of the pallet jack and everyone's cart. The woman let go of her cart and walked up to the side of my chair, grabbing my right side push rims and tires and yelled “I SAID MOVE!” and pulled up flipping me and my service dog out of my chair and onto the ground with my body hitting the shelf to my left and dragging a ton of baking products off the shelf and on top of us. A bunch of people turned around and gasped when she did this and the woman's teenage daughter embarrassingly yelled “MOM NO!” then ran up around her mom and flipped my chair upright.

I was sitting there on the ground so shocked I still didn't know if I was hurt being someone who is prone to dislocations, traumatic brain injuries and having multiple spinal cord manifestations. The woman's daughter was almost in tears from embarrassment and reached down to grab my arm to try to help get me back into my chair when her mom yelled at her to get over there The girl said “but mom” and she said “get your ass over here now” and turned around her cart to start to go around the next isle. The girl then let go of my arm, her eyes still all watery because she was about to cry, she mouthed to me “I’m sorry” and ran around to the other isle where her mom was. Of course I didn't blame her daughter. She tried to help and I felt bad for her too. She tried and proved she was different from her mom.

After they went down the other isle the woman in front of her and the woman in front of me started helping me. I was checking my service dog Maggie to make sure she wasn't hurt and she seemed fine, just had eyes as big as saucers like she was kind of in shock over the whole thing too. The lady in front of me picked Maggie up off of me and held her in one arm while both picked up all of the cake, brownie, cookie and powdered sugar laying on the floor and all over me and put it on the shelf. She then put Maggie down on the floor for a second while they both helped get me back into my chair and then the one in front of me picked Maggie up again and put her on my lap. The Lady in front of me pulled up her pants leg to look at the back of her ankle where my foot plate slammed into her and she was bleeding. I apologized and she laughed sarcastically and said “It's not your fault, trust me, you are not the one who should be apologizing for this.

The three of us started talking with the one in front of her talking about how disgusting it was that she did that to me when right then the woman who slammed the cart into the back of me came up the front of the isle yelling at everyone near the front of the line to get out of her way. She didn't physically assault any of them like she did me but she was yelling at everyone to get out of her way, shoving her way between carts to try to get things off of the shelf and throwing it into her cart. There were only two employees working that day, one ringing people up and one trying to stock all of the shelves that were being picked through faster than she could stock so I can't blame the employees either because they were grossly understaffed.

I have had so many experiences like this since Black Lives Matter took off, a lab core worker talking bad about me because I showed up without an appointment when their door and website says “Walk ins welcome” and I tried to make an appointment but the captcha was down on their website so I wasn't able to confirm that I wasn’t a robot in order to submit my appointment and purposely showed up at 11:30 am because you could see already claimed appointments and 11:00, 11:30, and 12:00 were all open appointments. To make things better, My doctor had already sent the request and I scanned it into the tablet they had there as well as scanning in pictures of my license and insurance so everything was filled out and all I needed was to pick up two plastic, half gallon jugs for a 24 hour urine test.

She was in the back calling me similar names to what the woman did at the eye center when the guy was illegally parked, bringing up slavery and how my grandparents may have been able to get away with whipping “N words” to get them to do what they wanted but I can’t, how inconsiderate I was for walking in and who did I think I was thinking I can just walk in all unannounced without an appointment. She said “I ought to slap that bitch! Girl, you gonna have to hold me back before I slap that bitch” talking to the other phlebotomist. I could hear everything she was saying after she closed the door and she went on and on, came out and asked for my paperwork so she could put it in the system, ripping it out of my hand, kept going on and on saying nasty things about me then finally came back out and nicely said “Oh, I didn't know you already put all of this in the system for me. So you’re just here to pick up the jug?” I said “Yeah, I've done one of these before so I don't need any instructions or anything, just the jugs. She went back and still talking nasty about me came back a minute later with the jugs and said nicely have a nice day but still her body language wasn't nice and you could tell her friendly voice was sarcastic.

That's when I decided to stick up for myself and stopped her before she closed the door again and said, “Did you know your walls aren’t sound proof? I heard every word you said about me while I was back there and just so you know, I tried to make an appointment before I came here. The captcha is down on your website; you know, the little thing you have to click online to prove you’re not a robot? It wasn't working so I couldn't click it to submit my appointment request but it said online and on your door that walk-ins are welcome. I saw you had empty appointments from 11-12. I didn't know if anyone else would be here since the site was down but that's why I chose to come now because I didn't think you would be busy because of Covid and all but I did try to make an appointment. Her facial dropped.

She then started kissing up to me saying “Oh sweetie, you are totally fine, that's what we're here for, come anytime you need to, she walked over to the double doors and opened the first one saying “Let me get that door for you sweetie.” pointed to the floor and said “Do you see that spot right there with no carpet? There used to be a big lip in the door right here and I personally had it removed just for people like you who are in wheelchairs so your wheels won't get stuck on it. Would you like me to get the other door for you?” I said “No, that's okay, It’s not that heavy, I’ve got it” she then said “No, no, no, I insist. I’ll hold it open for you, I’m here to serve you. She then followed me outside where my dad was parked which was awkward and said “would you like me to help you into your car?”

These are the more major examples but I’ve had more minor interactions too such as trying to buy vinyl for my Cricut maker from a black small business owner to be told “Sorry, I only buy from and sell to black people” I had a dental appointment and Medicare and Medicaid is a death sentence for those with rare diseases with only two dentists that took my insurance within a 30 mile radius. I settled for Refresh Dental in Hebron, Ohio which was quite a drive but none that took my insurance were close so I made an appointment. When I called I asked if they were ADA accessible because I’m a wheelchair user and the receptionist said yes. I then asked about Covid and the precautions they take because I’m immunocompromised. She said they are very careful, told me they wear full PPE, mask, face shield, smocks, they have updated their HVAC system and are really clean. She said none of their staff had contracted Covid so I made an appointment.

When we got there we parked at a building that looked like it was about to fall in. Termites had eaten all the way through the window ledge, and you could see the studs behind it. When I went up to the door I was relieved to see a sign saying to go to the white building behind that one, surrounded by a bunch of orange stickers which looked like condemned stickers. Their driveway was gravel and anyone who is in a chair knows, a gravel driveway isn't easy to roll on at all so though it was cold outside I was getting myself into a sweat going back to the building behind it. The first thing I saw was a staircase with about 9 steps up into the building and I was thinking uh oh. I hope they have another door. I went around the building and found another door and this one had two steps into it. It was a door with a step into it, you walked about 5 steps and stepped up another step into a second door. I called the office and no one answered.

I then called my mom who was in the car by the first building and asked her to come over there. She saw the steps and said “You’ve got to be kidding me” and went into the building to talk to them and then came back out and told me what they said. She asked the receptionist if they had a ramp or another way into the building for people in a wheelchair. The receptionist pointed to the door that my mom just came in and said “That's the door our disabled patients use” My mom told her I’m in a wheelchair and called ahead of time and was told they are ADA accessible and the receptionist said “We are ADA accessible.” My mom followed up saying “Then how can someone in a wheelchair get in here? The receptionist said “Can't she just walk in here?” My mom said “No, she’s paralyzed” The receptionist then said “Well we have other patients in wheelchairs and they just leave their wheelchair outside and walk in here. It's only two steps.” My mom then said “So, we just drove 40 minutes here and you’re not ADA accessible?” The receptionist said “Yes, we are” my mom said “but you don't have a ramp?” She said “When your daughter called she asked if we are ADA accessible. We’re ADA accessible, not wheelchair accessible.” My mom said “First of all wheelchair accessibility is part of being ADA Accessible, you don't have wheelchair access you are not ADA Accessible and second of all, she told you she was a wheelchair user so I don't know what else you could have thought she meant by ADA accessible. The receptionist said she had to go speak to another staff member. She then told my mom to have me go back up to the front building and they would bring supplies from this building and meet me over there to see me.

We went back to the first building and I had been sitting out in the cold all this time. We sat outside the building for 20 minutes waiting for someone to come unlock it. I then called their office and this time someone answered and I said “I’m really sorry for bothering you but will it be a while before anyone gets over here? The reason I’m asking is because I have Autonomic Dysfunction so cant maintain my body heat well and was wondering if it was okay if we go back out and sit in the car until someone is ready for us” She said “stay there, she should be there right now” I said okay and waited, finally about 5 minutes later someone came to the door and opened it. The concrete wheelchair ramp was so old that it had sunk about two inches into the ground so I still had to pop a wheelie and push on my wheels while my mom pushed the back of my chair to get up into the door.

When we got in there it was filthy, every surface was covered in dust, dirt, wood chips and dead bugs. It smelled like the moldy basement of my sisters 1890 house. It was so dirty that I put my service dog in my lab because I didn’t want her to sit on the floor. I could see a trail from my wheels and my mom's footprints in the coat of dirt on the floor. The receptionist brought out paperwork for me to fill out and while I did she and the hygienist were flipping breakers to turn on electricity to one of the rooms and were bringing over a laptop, air purifier and some dental tools. I could see them in the room. The hygienist took a dry paper towel and brushed the dirt off of the chair and edge of the countertop onto the floor, not using any chemicals or even moisture to clean anything. The dirt started floating around in the air which was when they brought in the air purifier to suck some of it up. She sat the dental tools straight onto the counter she had simply brushed the dirt and dead bugs off of. I watched them do all of this while I filled out my paperwork and sat in my chair waiting for my appointment. They eventually called me back, now well over an hour after my appointment time. I gave my service dog to my mom because they had to do x rays and went back.

I got in the dirty chair and the hygienist only had a mask on and nothing else. She wheeled in an old x ray machine that looked like it was jimmy rigged to a sawed off IV pole. She put the bite wings in my mouth and tried to take the image and nothing happened. She yelled at the receptionist to hit another breaker and took the first image of the tooth that was bothering me. She then pulled the bite wings out of my mouth and that's when I noticed that they were reusable bite wings and having a lot of medical knowledge I knew those cannot go into an autoclave and was horrified when I saw that they didn’t have the clear sanitary cover bags on them to prevent the spread of disease but at this point I had already had them in my mouth and the damage was done. Having no clue if I had just essentially French kissed a Covid patient while being immunocompromised myself and having a condition that so far no one with it who has contracted Covid has survived it was too late so I didn't say anything. She put it back in my mouth for another image. Once she was done she grabbed a camera made for taking pictures of the inside of the mouth. It also had no sanitary covering on it and she took pictures of my teeth and said we have to wait for the dentist to come over.

I looked around the room while waiting and it was totally empty except for the chair I was sitting in. There were no pictures on the wall, no curtains, no TV, no pedestal where the little sink you can spit in usually is and where the cleaning tools and suction hook up, no chest of drawers with toothpaste or other supplies. They didn't even have any light in the room, just a light fixture with wires hanging out of it. Just a very thick coat of dirt, dust and dead bugs everywhere and a window letting light in. When I looked at the window I noticed there was light coming in around the window where termites had eaten holes all the way through the wall around the window casing. There were brown streaks running down the wall where water had come in the holes which I was assuming explained the moldy smell because if there was water getting all the way inside through the swiss cheese termite walls then there is probably a ton of water and mold behind the walls. I I continued scanning the room while talking to the hygienist about my dry mouth and she told me she was going to give me some jell to trial for dry mouth. Soon after, the dentist came in and was very cold. He said nothing to me at all but said to the hygienist “Cavity on 15 and 16” and left totally ignoring me when I said hi. The hygienist told me to go to the front where the receptionist was to schedule a filling and a second appointment for a comprehensive dental since they refused to do them the same day or do the imaging of my whole mouth when doing the images of the one tooth.

the receptionist had brought over a laptop of her own and tried to schedule my filling for two days after I got the second Covid vaccine and I told her I didn't think that would work because I would get the vaccine less than 48 hours prior to the appointment and I didn't know if it would make me sick or how long your sick for when you get it but I know my nurse didn't feel well for about a week after hers. The receptionists said “You’ll be fine” and scheduled it anyhow making sure to tell me about their cancellation policy and fine which she should know with the vaccine I wouldn't know how it effected me until the cancellation policy had passed. She then went on to tell me that she cant get it because she has a heart problem. I told her I couldn't either at first either but not because of my heart problems but because I'm a high anaphylaxis risk but my doctor came up with a concoction of meds that we can take starting two days before the vaccine, the day of and three days after that has shown to prevent full blown anaphylactic shock in most of us. She said we would have some kind of allergic reaction and still can go into anaphylactic shock but it will reduce the chances so hopefully the allergic reaction is tolerable and we won't need to go to the hospital. So I went that route and got the vaccine at a place close to the hospital. I then said, It's too bad that more healthy people don't consider people who literally can't get a vaccine or are immunocompromised and won't get the full benefit, or any benefit at all from the vaccine before they refuse to get it. She said Actually, I can get it, I just dont think I should get it. My dad got it and my sister and I tried to tell him not to get it but he didn't listen to us and got it anyway but I guess when you're old or sick like you guys are and are going to die sooner than later anyhow you don't really have much to lose.”

I felt like she was throwing me in the grave. She then said “you know that they chop up aborted babies and put them into the vaccine right? I said “Nahh.. that's just a rumor that went viral on Facebook that was originally created by some college freshmen. There's no fetal tissue at all in the vaccine. Where the fetal tissue comes from was in the 70s and 80s two women voluntarily donated their aborted fetuses to science. No other fetuses have been used since then because they have replicated the cells over and over again. Think of cloning. They do this so they won’t need any more fetal cells. The replicated cells aren't used in the vaccine, they are used in the early states of testing potential vaccines before they even start conducting studies on animals and after the hypothesizing stage to see how human and living cells respond to benign injected with the possible vaccine to ensure it doesn't harm the cells and does what its supposed to, which not only saves money because the cells can be replicated over and over again but it also helps save animals because its a way to test the vaccine before moving on to testing on them. Of course a lot more can be found on living animals than just in cells so things can still go wrong in the animal phases but there is no aborted fetus at all in the vaccine, it's simply used as a cell to test the vaccine on.” She said Well I’m a nurse too, not just a receptionist so I would know.

I then thought this would be the perfect opportunity to change the subject and said “Oh, really, I am too. I graduated from Columbus State, where did you go to school?” She changed the subject back saying, I know a lot of nurses and none of them have gotten the vaccine. Only a few people here have gotten vaccinated and this place has been riddled with Covid. Almost all of the ladies have had it at least once and they all are okay now. How many people do you know who have gotten vaccinated? I said “When I called to make this appointment I asked about Covid because of being immunocompromised and the person I spoke to told me no one had gotten it. Why would they lie to me? She said “I don't know who you spoke with but that's not true. This place has been riddled with it” At this point I was letting what she said simmer a bit and sink in, honestly not happy at all that they had lied to me more than once at this point and about very important issues.

She then went back asking me how many nurses I knew who had gotten vaccinated. I said all of them and not even just people I graduated with my home health infusion nurse got hers but she ended up getting Covid too. Idk if you saw on the news about the senior husband and wife that got Covid and the nurse arranged for them to be put in a room together and they died within minutes of each other? Well the nurse who set that up, her name is Mariah and I went to high school with her. Just a fun fact I guess.” She said “Well did she get vaccinated? I said “yeah and right then the hygienist came back with the dry mouth gel so I cut the conversation off and said I needed to go because my mom was out in the car. I couldn’t believe they had a halfway decent office for their able bodied patient but put their patients in chairs into a filthy, condemned building that is moldy and about to fall in from termite damage. If that's not discrimination, I don't know what is. and to top things off, I put the dry mouth jell into my mouth and it tasted awful. I looked at the expiration date and they had just given me and it had expired over a year prior. I saw another dentist and also found out that I never had a cavity at all and my wisdom tooth was coming in.

I do not feel included when it comes to my extended family, friends, community or country. Most things labeled handicap accessible aren't including the Franklin County Social Security Office which slaps a handicap sign on their bathroom stall which the door is so narrow that my tiny wheelchair for my 112 lb. self rubbed the edges of the door trying to get into it, not meeting the 32” door clearance standards listed in the ADA laws nor did it meet the minimum 5’x5’ size limit in order to be ADA accessible so most people in chairs cant use it at all and even those with tiny wheelchairs like mine cannot get their char in far enough to close the door so are forced to use the bathroom with the door open, on their period while people walk past and see everything. It’s disgusting that we live in a society where people in wheelchairs, even if they can hold their bladders are forced to wear adult diapers or map out every public facility, only going to ones they know are accessible enough because here in the US we are so welcomed and marginalized that we don't even have access to about half of the businesses in the US let alone a bathroom that everyone else in the world who is not a wheelchair user takes for granted and when we are lucky enough to find a palace that has a toilet we can use, it's always the filthiest ones, the ones that able bodied people use as their private pooping palace believing that just because it’s two or three feet wider that extra three feet will make their fart inaudible.

This is a country where an able bodied person can buy a new car for $16,000 and a used one for sometimes less than 2 grand but if you’re disabled your new accessible vehicle costs around $75,000, a used… well many states you can’t insure a van that is more than 5 years old and cannot convert one more than 4 years old and it has to be less than $50,000 miles and fit a bunch of other criteria so used isn't much less. We live in a country where you are not allowed to pay an able bodied worker less than minimum wage yet SSDI comes out to $2.60 less than minimum wage and employers are allowed to pay disabled workers less than minimum wage. We live in a country where ADA laws were passed but police officers don't have to enforce any of these laws. Here in the US they have schools for girls only, boys only, black only, deaf and blind but no special schools for children with physical or developmental disabilities, just life skills training for adults so education is still not equal. A country where if the Black or Asian Americans are brutalized by the police or community members and it is broadcasted on the news even though more than 70 percent of police brutalities in fact occur to those who have physical, psychological or developmental disabilities but this is never mentioned even if the person fits into two minority groups.

This is a country where if you have a service animal that you rely on you still don’t have the freedom of religion because a church can legally turn away a service animal. A country where if you are a drug addict you can get 50 mg of low dose naltrexone free and go to suboxone clinics free of charge but if you are a chronic pain patient you have to pay over 300 for 2 mg of naltrexone to control your pain and stay off of opioids which are oftentimes the only things covered on Medicare but also the same medications being cracked down on not by people who need them for chronic pain but by addicts in turn putting limits on opioids so drug addicts can live and chronic pain patients who are in so much pain they have seizures and go into organ failure to live in agony and possibly even eventually die weather it be suicide because they cant stand the pain or from organ failure that results from the pain.

A country where doctors are taught “if you hear hoof prints on the ground think horses not zebras'' meaning when a patient presents with a symptom consider common conditions that can be associated with these symptoms not rare diseases allowing doctors to abuse and neglect patients and slap psychological diagnoses on them so they don't have to jump into the rare disease realm of medicine or even learn about it in school. This results in more than 250,000 deaths each year from medical neglect alone and that's not even the people like my mom who wake up on life support to find out days of their lives have passed and they are now living with permanent disability. A country where there are still states like ohio where you cannot sue for medical abuse and neglect unless someone died or comes out essentially a vegetable and if this results in disability where you are in a wheelchair or have limited cognitive impairment but can still speak and think to some degree, yet still resulting in permanent disability, it's just too bad, so sad for you because sure you went in for a simple gallbladder removal and came out needing the blood in your body replaced 4 times, going into exploratory surgery with a 5 percent chance of survival, split from your breast to your pelvic bone to have all of your organs removed, your liver repaired which fell apart multiple times in the process of trying to sew back together your liver the other doctor cut open and tried to hide for 9 hours while you bleed to death, sure you came out on life support after being deemed legally dead multiple times and had four brain aneurysms because of this trauma, which resulted in cognitive impairment, missed months of work only to get laid off, now deal with chronic pain, fatigue and weakness for the rest of your life and will never be able function like you once did ever again but you didn't die and you're not cognitively impaired enough so that's on you, the doctor on the other hand can keep operating on people as if nothing ever happened.

America is where people on Welfare, who are poor and in many cases don't want to work, make more money and get more financial benefits than someone on SSDI who is disabled and literally can't work. A country where people on Medicaid who are poor get better healthcare than the sick and elderly on Medicaid and if you qualify for both Medicare and Medicaid you might as well forget it because your insurance isn't much better than having no insurance at all regardless as to what special programs you fit into, where the Medicare formulary trumps the Medicaid formulary and if Medicaid for the poor covers a service but Medicare doesn’t, what Medicare says, goes and you simply don't get coverage for your needs. A country where a president cuts funding to the Orphan Drug Tax Credit, oftentimes the only funding that most rare diseases have to study possible treatments for these diseases while cutting taxes multi billion dollar industries have to pay in taxes such as his hotels and golf courses and every time they send out a relief check during Covid they make up for it by cutting funding to either schools or Medicare, particularly Medicare recipients with rare diseases, removing them from the formulary and allowing them to die to pay for these checks, hitting those with rare diseases because they are just that rare, meaning less people to complain so it's less likely there will be large riots for these people. This essentially reversed the act put in place ensuring those with preexisting conditions can get insurance leaving us so underinsured that many will likely die because they cannot get their medical care covered and can't afford it.

A place where those with disabilities are still not accepted, ADA is not yet being utilized in many areas or even seen as real or legitimate leaving us to be isolated from all aspects of our lives. We have very few rights, access, equality or inclusion more than 20 years after the signing of ADA into law. This leaves a lot of people like me to live lonely lives where we have no chance to succeed or in some cases such as those issues related to Medicare, not even a chance to live. By law an insurance company cannot deny you insurance based on pre-existing conditions however they can deny you coverage of the vital care you need once issuing you a card leaving insurance virtually useless with many rare diseases making survival of the fittest a terrifying reality. Welcome to America. The home of land of the free and home of the brave.

#MyEDSChallenge #MyHSDChallenge

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