Why I Went for the “G.I. Jane” in 2017

I’m a 90s kid, but I don’t remember 90s culture – I’m only 20, so I was born in ’97 – by the time the 90s had closed, all I remembered was that I wore a lot of cute rompers.

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I’m on the cusp of the turn of the century, so while I’m categorized as a “90s kid” I wasn’t aware of the culture, fashion, & political issues going on at that time. That’s because I was under 4 years old.

The 90s were groundbreaking in many ways – & I won’t turn this into a history class, but hear me out: the first supermodels were born, universal healthcare became a widely discussed topic…& Natalie Portman shaved her head for the role she played in “V for Vendetta.”

Natalie Portman was not the first woman to get her locks chopped; she most certainly wasn’t the last, either, but she was one of the first people that popped up on my Google image search when I looked for buzzcut inspiration back in 2016. Charlize Theron, Natalie Portman – two powerful actresses that shaved their heads in the 90s for film roles.

But…how about we skip back a few years, to a name I never heard (I know…shame on me) until I started really looking into buzzcuts: Sinéad O’Connor.

Sinéad’s buzzcut was done a few years before Portman or Theron made the call to go bald – & she didn’t do it for a film role, either. O’Connor’s look was admittedly “edgy” – the singer/songwriter burst in on the scene, looking like someone no one had ever seen before…& love it or hate it, O’Connor was different. She garnered attention for her buzzcut. She was “more interesting” because of it.

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After I buzzed my head, I got a lot of “you look like Sinéad!” comments. I don’t really see that close of a resemblance; Sinéad & I don’t have the same face shape or eye color, & while we’re both fair-skinned with brunette buzz cuts, I wouldn’t call us twins. Still – the continued comparison to O’Connor picqued my interest, & I looked a little further into what Sinéad was all about. I wasn’t around in the 80s, & I never listened to O’Connor. I came in pretty unbiased; all I knew was that she was bald, & that she liked being bald.

I saw that O’Connor was extremely open about her mental illnesses & her past with sexual harrassment & assault. It seemed evident to me that her shaving her head (& continuing to do so) was one of many ways to cope with her traumatic past – but it was also a way for her to break barriers; a way for her to assert herself in Hollywood, an industry that we all know by now is rife with misogyny.

I came across an interview O’Connor did for “Oprah: Where Are They Now?” One of the questions addressed her being a young woman in the Hollywood/music industry, & how her buzzcut helped her “keep safe”:

“They wanted me to grow my hair really long and wear miniskirts and all that kind of stuff because they reckoned I’d look much prettier,” she told Oprah – “so I went straight around to the barber and shaved the rest of my hair off.” O’Connor went on to say that she felt as though her buzzcut protected her in many ways. “I always had that sense that it was quite important to protect myself — make myself as unattractive as I possibly could,” she finished.

A couple things here: I don’t think Sinéad for one moment felt “ugly” when buzzing her head – at least, that’s not what it seems like to me, particularly because she’s been very vocal about continuing to shave her head…perhaps until the very day she dies. In a 2010 interview with Patrick Barkham for The Guardian, she said: “I don’t feel like me unless I have my hair shaved. So even when I’m an old lady, I’m going to have it.”

Clearly, O’Connor enjoys the way she looks with no hair…& I do as well. In researching O’Connor’s past, how/when/why she shaved her head, I found a lot of parallels between the two of us.

I initially shaved my head in the summer of 2016, when I really wanted a tattoo. At the time, I couldn’t get one – my blood counts (thanks, chronic illness!) were too low to ensure that I wouldn’t get an infection. I was frustrated by this; it felt like just one more affirmation that I was not in control of my body, & it made me feel incredibly angry & sad at times.

I came across a few models on my Instagram explore page with freshly shaved heads around that time. I looked, & I flipped away. I went back to look again. & again. By the end of June 2016, I was heading to Supercuts.

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The initial buzz – June 2016

The initial reception I got from my very short hair wasn’t all positive. Many were confused; a few were angry. That made me confused – all of a sudden, I was wondering: is my beauty/value placed solely on how much hair I have or don’t have? After all, my face looked the same. I had no permanent ink on my body. I just had (very) short hair.

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Because of the somewhat mixed reception, I shaved my head two more times that summer (just to touch up) & let it be by the time I went to school in September of that year. By the end of the year, my hair was curly/wavy, & I looked a bit like Finn Wolfhard (yes, from Stranger Things).

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September 2016
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November 2016
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December 2016
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January 2017 (starting to feel like Finn Wolfhard)
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March 2017
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April 2017…
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April 2017…
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…& April 2017

I didn’t consciously make the decision to grow out my hair; I think that I subconsciously told myself: people don’t think this is attractive. You’re probably going to get weird looks. Just grow it out – it’s hair, it’s not a big deal. So – I grew it out.

Don’t get me wrong: I didn’t feel as though any stage of my “growing-out process” was awkward or ugly. I enjoyed seeing my hair change – & it changed quite quickly. First it was a fluffy pixie, then it was a flat pixie, & by the time February 2017 hit, I could pretend as though I was just slicking back very long hair (thanks to lots of bobby pins) I could make a quiff, or I could leave it be & look like Harry Styles, 2013 era. I didn’t ever hate my hair – let me make that perfectly clear.

But – but! June came around. It was summer 2017, & I’d just had a very scary doctor’s appointment on my birthday (fun, I know). The information I was given was incorrect, & I was in a full-fledged panic attack. I was told that if I didn’t have X surgery or Y procedure, I would surely die. This was incorrect, but a doctor was telling me that. It wasn’t something I could just brush off – lots of research & careful decisions needed to be made before I “broke up” with that doctor.

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Early June 2017

In the meantime, my mind was in shambles. I wasn’t really sure what to do with myself in the days between that initial appointment – & the decision I finally made (which ended in me departing from the practice). Not everything is 100% clear in my mind around those 10 days or so, but I remember sitting in the car on the way back home (my mama driving) both of us crying, & me thinking over & over again: I need to shave my head. I need to shave my head.

That evening, my mama went out with a friend (it’s what she deserved) & I went to supercuts. I took a before photo – my eyes look sleepy & dull, & I look very sad. Then there’s an after photo, taken the moment I walked out of Supercuts (I was sitting on the curb when I took it). The outfit is the same, the photos were taken 30 minutes apart – but I truly believe my eyes look happier & brighter once my hair was off. You can see:

At that moment, getting rid of my hair was one of the most empowering decisions I could have made. It was me telling my mind that no matter what happened to me, I still had some control over my body. My body is my body, no matter what – & I am in control & ownership of it.

I’m not sure if people knew I intended on keeping it around this time, but it was my full intention to do so. In fact, about a month later, I bought my own clippers & started shaving my head myself. Initially, it took about three hours – the end result was uneven (& that’s me being kind) & my parents were mad, because I left a big mess in the bathroom. I don’t blame them.

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I’m better at shaving my head now. I’m also better at cleaning up the mess.

I kept redoing my head, & as with most things, it got easier. I kept getting asked why I wanted to keep doing it. I was often asked if I shaved my head because of my illness, or whether the medications I was on caused hair loss.

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The answer to that is no! I do not shave my head because of my medication side effects. I do shave my head because of my illness (at least, it’s one of the reasons why) but it’s not because I would have a patchy head of hair if I didn’t shave it.

Another question I get: Did you “pull a Britney? Is this a mental breakdown?”

First of all – no, I didn’t “pull a Britney.” Even if I did, it’s insulting to use an actual mental breakdown as an expression/jokey slang. Spears clearly was going through a lot when she shaved her own head, & perhaps it helped her cope – perhaps it didn’t. That’s not the point, though. Although I shaved my head to cope, it wasn’t because I was in imminent danger. It was simply a way for me to replace past negative coping mechanisms with a positive one.

I had a lot of unhealthy coping mechanisms for the past two years when trying to wrestle with my illness. Some of them fall under the category of self-harm. Others just made me feel badly about myself. I tend to fiddle with/twist my hands or fingers when anxious. That only made my arthritic symptoms worse. I would have panic attacks, & would not know what to do with myself – so I would run around, I’d hit the floor, I’d punch my stomach, hoping that something bad would happen.

Thankfully, nothing did. I’m lucky nothing did – but that’s just a small peek at some of the very unhealthy ways in which I “tried” (& failed) to cope with my illness. Self-harm only brings greater mental anguish; sometimes, it can be life-threatening. I’m lucky I’m alive today, & I am grateful that I’ve moved past that toxic mindset & replaced those toxic behaviors with healthier ones.

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Now, when I’m anxious, I rub my head. It feels velvety & soft; it’s like having a stress ball – except the stress ball is my head. I’ve found that I do this more now. I don’t twist my hands. I don’t hit my stomach. I just “fuzz my head,” as I call it.

So – one of the biggest reasons I shaved my head in the first place (& continue to do so) is because it helped me find a healthy coping mechanism; one that would soothe me rather than harm me. I find now that shaving my head is very ritualistic. Since I do it myself, I have a whole routine. It used to take three hours; now, it can take 30-45 minutes if I do it right. I like to shave my head the evening before some serious testing or a big medical procedure. It’s a reminder to myself: this is my body, & no one can take that away from me.

Let’s move back to Sinéad for a second.

When I read that O’Connor shaved her head to protect herself; to make herself look as “ugly” as possible – I started seeing a lot of parallels between my behavior & hers.

As someone who now ID’s as lesbian, maintaining my buzzcut makes me feel “gayer.” Does one need to have a shaved head to “feel gay?” No – absolutely not. Personally, however, I feel more confident, more assertive, & more myself. I feel comfortable with my identity, & my very short hair helped me come to terms with my sexual identity. Sinéad’s explanation pretty much nailed it: I wanted to avoid the male gaze. Cishet men do not typically find women (or non-binary folks) with buzzcuts sexually appealing. Never say never, of course – & I’m not trying to imply that it solves the problem of being approached in a sexual way by men, because when a man wants to catcall, he will – but it helps. It’s an outward way for me to say: Hey – this is who I am. I feel very comfortable like this. 

Would I be any less gay if I didn’t have my head shaved? Of course not! If I grow out my hair in the future, will I be less gay? Of course not! Right now, though, it’s what I need. With the help of my $50 WAHL clippers purchased at Walgreens, I’m maintaining my own G.I. Jane, reaffirming my identity to myself every time I look in the mirror – & I think I look pretty great, too.

When asked: Are you keeping your hair this way forever? I don’t have an answer, because I don’t know. I do know that every single time I shave my head, I feel comfortable, calm, & at peace with myself. It’s an incredible coping mechanism for me – it’s a healthy one. It’s not putting me in danger. It makes me feel freer, more assertive, & more willing to put myself out there. It’s been integral in helping me feel more comfortable with my identity as a chronically ill lesbian.

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Post-shave (just a few days ago)

Buzzcuts have been breaking gender norms on & off the runway in the past few years. Although many of the models sporting a buzzcut identify as cisgender heterosexual women, just as many do not. LGBT model Ruth Bell got her career kickstarted when she shaved her long blonde hair. Adwoa Aboah (model of 2017) has had a buzz for quite a while, & Sudanese models (& runway icons) Ajak Deng & Grace Bol have had them for even longer. Off the runway, Rihanna & N.E.R.D. “broke the internet” with the music video Lemon. The song Lemon (by Pharrell) features Rihanna rapping (the first time we’ve ever heard Rihanna rap) & the music video (watch it here) features Mette Towley, a dancer who got her head shaved on camera by Rihanna (!!!) who proceeds to dance for the remainder of the video. That sparked even more interest around the buzzcut. When Rihanna’s involved in a project, the people pay attention. I have no doubt we’ll continue to see even more buzzes pop up after this.

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The acclaimed hair stylist Guido Palau had this to say on the return of the buzzcut (as told to Allure): 

“[A buzzed head] makes you feel that a woman is strong, she has her own mind, and wants to let people see her the way she wants to be seen.” says Palau. “I often find that when I do buzz cuts, girls would change the way they dress, the way they stand, their whole attitude.”

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A sentiment I’m on board with – followed by a video of Mette dancing for a Beats x Nerd advertisement 

I couldn’t have said it better myself. My fashion, my stance, & my attitude have made leaps & bounds ever since I consciously made the decision to maintain my buzzcut. As someone who struggles with body image, thanks to chronic illness, that’s incredible to experience. It’s an incredible existence to live. & it makes me feel more comfortable with my sexuality.

So – sorry, everyone! If you don’t like my buzz, it’ll be staying around for at least a little while. I don’t have any plans to grow it out at the moment. Who knows what the future will hold, right? In the moment, I’m grateful to my clippers, my own personal growth, & my Instagram explore page for initially introducing me to the style.

Have any of you thought of buzzing your hair? Let me know if you have already done it, if you’re planning on doing it – or if you’re just not sure! I do get this question a lot: “Will a buzzcut look bad on my face shape?” To that, I say:

Do men wonder the same thing before getting a buzzcut? Do little boys? There are always a few exceptions, but the overwhelming majority would probably not worry about it. Remind yourself of that – & if you still want the buzz after that, go for it. Be free.

Check out my YouTube video on shaving my head here – & check out my other video on why I did it here!

Stay bald.

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Love,

Sofia ❤

#TopTenSeries: Finale! Ten Things I Wish I’d Believed in Early 2017

Welcome my final piece of #TopTenSeries! It’s December 31 – so Happy New Year (Eve) – that means it’s time for my top tens to end. I thought I’d end it on a more personal note. This is more of a diary entry than a review post or an advice post.  It’s about how I got to the mental space that I’m in now: I’m not always happy, but I’m always happy to be alive. That’s a complete 180 from the beginning of this year. I was very depressed about my health, someon else’s health, my hands were starting to fall apart & I felt as though my life was, too. It was a dark, sad time, & I wish I could go back in time to January 2017 Sofia, just so I could tell her: it will be okay. 

Photographs by me!

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I can’t time travel, so this is the best thing I can do – here’s a list of the top ten pieces of advice I wish I’d known about/been ready to accept at that time.

  1. You will find joy & happiness in existing. I know that doesn’t seem remotely realistic right now – just keep that in your head. Be patient; I know it’s hard…but you will be able to live a happy life. You deserve that.
  2. Do not dangle your feet over the edge of that building. You have so much to show the world; you have so much time to express your true identity, be happy that you’re alive…don’t let that go. So many good things are coming.IMG_5604
  3. You will lose your ability to play violin at university – a career in violin performance is something you’ve dreamed of forever. For a little while, you will feel numb & angry; emotionless & depressed. Listen: your last concert will be the best one of your life. You sound beautiful. I can’t believe we did that with our hands, despite the arthritis making my fingers swell; despite my achey knees. It was worth it. I’m infinitely proud of the emotion you put into that. When watching that performance after it was taped, I knew that it was the best I’ve ever given. The most painful? Yes. Most beautiful? Yes. You’ll be crushed by this, but you will forever remember that concert.
  4. Keep making those little videos. They’ll get better in time. Film/photograph anything that you see beauty in.IMG_5595_Facetune_08-12-2017-17-27-05-1
  5. If they say your buzz cut doesn’t look good buzz it shorter. You will look incredible. Know your worth & beauty.
  6. You’re currently feeling confused & lost with who you were/are. You feel very lonely. You are afraid of the word lesbian. This will come easier in a while. I promise.
  7. It’s okay to like girls.IMG_5583
  8. Dance in your room, dance while you’re going on a walk, dance anywhere where there’s space. Dance down the street in a busy downtown if you must. It’s a magical feeling; you’ll feel very much yourself.
  9. Surround yourself with people who will stick by your side. It is okay to have chronically ill friends; in fact, it’s great! You don’t have to be friends with someone simply because they’re ill. You’ll find some great people who will be of great help to you; you’ll share a lot in common because you have the same interests. Chronic illness doesn’t have to be the root cause of any friendship – just know that if you find a chronically ill person you can relate to on many levels, it will be a beautiful friendship.IMG_5578-1
  10. You deserve to be alive. You deserve to feel proud of your identity. You are much more than your illness. No one can ever completely understand your situation…but keep your treasured people near you. They have & will continue to light up your life.

Happy New Year! Let’s make 2018 a good one. I’ll be optimistic this time. & please trust me: it will get better – it really will. It may become different, but it will get better.

Love,

Sofia

“#DisabledAnd” – SOFIA.

“#DISABLEDAND”

hello,

it’s sofia. if you haven’t come across me before, it’s nice to meet you. let’s get into what all this is about, yeah?

i am 20 years old. i have a chronic invisible illness: severe crohn’s disease, with complications of inflammatory arthritis in my hands, knees, & feet. it caused me to put a halt to my plan of becoming a professional violinist.

when i was first diagnosed at 17 (almost 18), i was incredibly ashamed of my illness, & did everything to hide it from people. i’d been experiencing symptoms for years, but hadn’t really said much – until things got bad enough to get me hospitalized.

now, at 20 years old, i am open & honest about my illness. i have used my pain to relate to others; i’ve started making “art” centered around my illness, the person it’s made me become, but also emphasizing my multi-dimensionality as a human being. my illness doesn’t make me one-dimensional, just as being healthy wouldn’t make me one-dimensional.

ever since i’ve had to stop playing violin, i have been writing more. i have been taking photographs of myself at vulnerable moments. i have been making videos, sharing my story & hoping that i’m able to be relatable to other chronically ill young people out there. i know they exist – i am one of hundreds of thousands.

i try to show my strengths as a chronically ill person. i don’t share my vulnerability as often. this is probably the most in-depth i have been to a “larger audience” – & i am incredibly grateful to myself, my friends, & my family for getting me to this point.

i’m also grateful for social media. it has helped me find people who go through similar things; it has helped me spread my message; it has helped me become more comfortable with sharing more, as i saw people responding in a positive manner chronic illness-centered to things i shared. it’s been incredibly validating & encouraging, & i am very grateful for that.

so – you’ve seen some positive videos & pieces that i’ve written. you’ve seen me smiling in hospital beds; now, i’m going to share a more painful, vulnerable moment

i have been nervous about sharing this, but i think it’s valuable – both to me, & to others experiencing similar things – to do this.

i don’t speak as well as i write, but i tried to incorporate a lot of different mediums into this project. there’s photos, there are some “diary entries,” & there is even a video.

before i share everything, let me explain the hashtag “DisabledAnd.”

#DisabledAndCute is a hashtag used on twitter & other social media outlets to raise awareness for those with disabilities, chronic illnesses, & terminal illnesses. it is one of many ways that disabled/chronically/terminally ill people share their stories with the world. it is incredibly important.

however – i am not always “disabled & cute.” sometimes, i am disabled & sad. other times, i could feel disabled & ugly. maybe i wake up one day feeling disabled & powerful. “cute” is one of many ways to describe a disabled person, & i think that the original hashtag is incredibly important, because it shows that disabled people can be beautiful, ethereal, breath-taking…you name it.

i am multi-faceted, & my illness(es) do not make me one-dimensional. “#DisabledAnd” is me sharing more about my illness & how i deal with it. it is me being “disabled & frightened.” it is me being “disabled & vulnerable.” it is me being “disabled & in pain.” it’s also me being “disabled & funny.” it is a lot of things. i took a semester off of university because i wasn’t well enough to attend. that made me feel disabled & weak. it made me feel disabled & tired. it made me – & still makes me – question my future.

i thought it’d be appropriate to share all of these things with the world, as i prepare to return to school in january. i am very proud of myself. i have a lot to work on, but i have overcome a lot.

this is quite frightening to share, but it’s something i have been working on for a very long while – consider it my “final project” for the school term i didn’t have.

i hope you can take the time to look at the “full picture.”

much much love,

SOFIA.

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instagram “live.” 11.22.2017 

VIDEO – RIGHT HERE 

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Stop, Drop, Go Get Your Damn Flu Shot

Before you start reading this, go to your local pharmacy/primary care physician & get your seasonal influenza vaccine.

I’m kidding. Read this first, if you feel like you could use some convincing. But please – when you’re done reading this…go get your damn flu shot. Let me explain why, okay? Let’s do this! For health! For less fatigue! For overall contentment.

Okay. First off, what is the flu, & why is it a big deal?

We could get into pages upon pages of articles, research, history books, & a whole lot more material – but let’s keep it short & sweet. If you want to know all about influenza/the flu & its history, it’s right at your fingertips – trust me. But here’s what I think we all need to know.

“The flu” is short for influenza, which is a virus. It’s been around for a long time (ex. Spanish flu) & tends to morph from year to year.

The flu is short-term; it usually resolves within a matter of days/a few weeks, can be treated quite easily, & can, of course, be prevented with a flu vaccine.

The flu spreads VERY easily – according to the CDC (Center for Disease Control) there are over 3 million cases a year in the United States alone. That’s a lot of people. The flu will vary in degrees of severity, but officially, it affects 3 million people per year…in the U.S. alone.

The flu attacks the lungs, the nose, & the throat; these are all mucous membranes, & viruses can spread more quickly & easily through these membranes. For most, the flu is treated with either over-the-counter medications like Tylenol/Aleve for the fever, or prescribed antibiotics. The more hydrated you are, the better – the flu dehydrates your system, so keeping up on fluids is important if you do have the flu already. Rest, drink water & juice, & rest. Of course, check in with your PCP (primary care physician) if your fever is too high, your symptoms are starting to get weird, etc. In my opinion, you should always go to the doctor when you’re not feeling well (if you’re able). This way, you could possibly nip something like the flu in the bud, & not have to pay more for antibiotics/Tylenol/etc. It could save you time, money, & trouble – that’s what I call a win/win/win.

Like I said, the flu always changes, which is why it’s important to get a vaccine every single year. This isn’t like a MMR shot; it’s not a one-&-done, it’s a long-term affair. Yes – that’s inconvienient, but once you look at the symptoms of the flu, it’s a small price to pay.

The most “normal” or “common” flu symptoms will most likely be some of (not always all!) of the following:

  • fever
  • chills
  • muscle aches
  • cough
  • congestion
  • runny nose
  • fatigue

There are more symptoms, & obviously they’ll vary from person to person, but these are, across the board, most common. They’re experienced by “healthy” individuals – people who may not have a fun time with the flu, but will not experience severe side effects if they’ve caught it. That’s the majority of the population; they’re called “low-risk” patients.

There’s another, smaller group that is the opposite of low-risk patients in most ways. They’re called…high-risk. Creative! The high-risk patient category includes young children, those who are pregnant, older adults. Last (but most certainly not least), it includes: those with chronic illnesses/conditions &/or weakened immune systems. Hey! That’s me!

What makes me (personally, I mean) a high risk patient? My chronic illness, the medications I am taking for my chronic illness, & my weakened immune system, which is all thanks to the low-dose chemotherapy medication I have taken & will continue to take – it helps my body accept the drugs I need to treat my illness, but it weakens the immune system. It weakens it a LOT.

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Flu Shots Can Be Sexy

I had a normal blood panel before I was hospitalized for the first time (in March of 2015). A normal blood panel means…that everything in your panel is in the normal range. Now, two years after diagnosis & various powerful medications, my white blood cell count is very low. That makes me prone to infections of any kind, & puts me at a higher risk of catching the flu than your average Joe. It gets better – like I said, the high-risk category faces all the symptoms low-risk category does…but we have even more! Best of all…these side effects are very dangerous!

So – what kind of symptoms could you experience if you’re a high-risk patient like me?

For high-risk patients, flu symptoms can trigger pneumonia or a blood infection, it can cause diarrhea (which causes dehydration…which causes you to feel even worse) seizures, &…death. Yes, death! A high-risk patient can catch the flu, get an infection, & die…because of the flu.

For those of you thinking thank god I’m not in that category: great!!! I am happy for you, of course. Health isn’t to be taken for granted. But…but! That doesn’t mean you shouldn’t get your flu vaccine. There’s less fear for those who are low-risk, because getting the flu wouldn’t be that big a deal. There’s a lot of fear for those who are high-risk, because I know that even if I get my flu vaccine, I’m still in greater danger of catching the flu than the average Joe – that’s because the flu has a lot of strains, & the vaccine might not cover them all. The average Joe would be able to shake off an unexpectedly severe case of the flu; I, however, wouldn’t. So – if a healthy person hasn’t gotten their flu vaccine, they can still be a carrier, even if they themselves don’t have many (or any!) symptoms. That means that I & many others are still at risk for catching the flu.

Last year, I got my flu shot at my specialist’s clinic – like I said, the flu vaccine is an absolute must for me – no “ifs” here! Still, I got a really bad throat infection, had to come home from university for a few days, & was on steroids for 10 days. I’d gotten my flu shot & taken all precautions – but was still in the ER. This was probably due to catching something laying around…most likely in a public bathroom/classroom.

This brings me to my next point: what (aside from getting the vaccine) can we do to keep healthy this upcoming flu season? The flu is an airborne virus, so it’s pretty easy to catch (remember: 3 million people per year get a case). These are some great tips that should be followed by high & low-risk patients alike:

  • Wash your hands. Wash. Your. Hands.
    • I cannot tell you how many times I see people using a public restroom & then just leaving without washing their hands. That’s…not okay at all! There’s no excuse to not wash your hands. The soap is there, the sink is there, & the paper towels are there, too. Please use them.
  • Use hand sanitizer.
    • Hand sanitizer isn’t as good as washing your hands, but it’s a good on-the-go way to keep clean. I don’t use any particular one – just whichever is in the drugstore checkout line.
  • Try to avoid hanging around people you know have the flu. 
    • Let’s face it – it’s plain stupid to hang out with someone you already know has the flu. Healthy people, please don’t do it! Sick (chronically ill) people: don’t feel like a bad person for not being able to bring a friend or S/O food or drink. You’re protecting your health, & if a friend or S/O gets mad about you saying you can’t come over until they’re better…they’re not a good friend or S/O.

If you still feel like your immune system is invincible, take some time to read this:

Basically, by getting the flu shot, you’ll be saving yourself a lot of potential grief. You’ll be saving yourself from getting the flu. You’ll be able to have one less thing to stress about during an already stressful time of year, & you will be helping prevent actual death among the smaller part of the population who are at greater risk for catching the flu – catching more dangerous strains of it, no less.

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Okay…what’s the grief you’ll be saving…other than avoiding the flu? Well, like I mentioned, even those at low-risk can still get a bad case of the flu. This can sometimes (not always) warrant a hospitalization, if the flu you happen to catch carries extra risk of pneumonia/other complications. If you get the vaccine, you’re already taking a big step to save your money for something other than potential hospital bills. Hospitals are expensive. Trust me! Please do. In the hospital, you’ll be charged for anything from a bag of saline solution to a few shots of IV medications to a bedside doctor’s visit. Then, you may be sent home with prescriptions to keep your flu under control. All these things cost money – no matter your healthcare situation (co-pays can be expensive, too).

Now that we have that covered, why does one need a flu vaccine every year, & why don’t we get the flu from the vaccine itself?

Like I mentioned several times, the influenza virus morphs; it’s a shape-shifter, if you will. It figures out ways to become stronger in different ways so that it will continue to thrive. So – last year’s flu shot is invalid, because there are different strains being added to the flu vaccine every single year. The flu this year will be different from last year’s; you still may get the same symptoms, but it’s delivered in a different way – again, this is why we need one every single year.

As for catching the flu from the vaccine, there’s almost (I’m speaking “scientifically” because there’s no always; this, however comes pretty close) zero chance that that will happen. The flu vaccine doesn’t contain a live virus; because of that, it can’t give you the flu. There used to (& perhaps still is…I don’t know because I never had that option) be a nasal “injection” that acted the same way a flu shot did…at least, it was supposed to. The CDC no longer recommends getting the nasal method of vaccination, because it contains a live virus. This increases chance of feeling quite sick afterwards, & yes – even catching the flu from it.

No, you will not get autism from the flu vaccine – or any other vaccine, for that matter. To say otherwise is uninformed & insulting to those with autism!!!

Check out this great page “Key Facts About Seasonal Flu” on the CDC’s site – it answers a lot more questions than I did, & does in a more eloquent manner.

So – here’s your push. I hope that if you haven’t gotten your flu shot yet, this little post convinced you to do so. Remember – you’re saving yourself money, maintaining your own health, & helping protect the health of those around you with compromised immune systems. Like I said: win/win/win. Stay safe, wash your hands, get your vaccines, & be careful around those with supressed immunity if you do end up getting the flu. Here are some more ways the flu can be spread:

  • By airborne respiratory droplets (coughs or sneezes).
  • By skin-to-skin contact (handshakes or hugs).
  • By saliva (kissing or shared drinks).
  • By touching a contaminated surface (blanket or doorknob).

Alright…NOW you can go do it! Go go go!

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Flu Shots CAN! Be Sexy.

Love,

Sof ❤

Illness Is Not A “Fetish,” My Illness Has A “Fetish” For Me: Looking At the “Fetish” Music Video By Selena Gomez – & How I Think It Relates To Chronic Illness

NOTE: Before I begin, I’d like to say that I am very well aware of the…lack of social awareness Selena Gomez has had (“all lives matter” statement & so on). I still think it’s important to hear this out. Selena Gomez may not be likable to you, to me, or anyone else; she may have offended you many times; she could be the worst friend or just bad at conversation. That does not, however, make her chronic illness go away. It furthers my point that chronically ill people are not your angels – chronically ill people have said & do say offensive things. They are not all “good.” They are all not “correct.” I think it’s important to acknowledge that. I hope that Selena’s illness has given her perspective on marginalized communities – because being chronically ill does make you part of one of those marginalized communities, like it or not. Regardless – I think this music video & her latest announcement carry a lot of weight. I hope it will inspire people to speak up about how they feel. I hope more celebrities will continue to open up about chronic illness. Chronic illness (invisible or not) is present everywhere. Either you are ill, or you know someone who is. This is not “rare.” This is common – yet it’s treated as though it has never been heard of. 

I wish every single day that more people will continue to learn more, & that chronically ill people will feel confident to speak up for themselves, about themselves, & share other things about themselves, too. Remember – we are not only our illnesses. One more side note: although Selena Gomez & I do not have he same illness, we both have “invisible illnesses.” I think that if you believe this music video has metaphorical significance to chronic illness, it’s quite relatable across the board – no matter what illness you have. For context (in case you didn’t already know) mine are Crohn’s Disease & inflammatory arthritis. This past summer, Selena Gomez released a cheeky single: “Fetish,” featuring Gucci Mane. Initially, there was a lyric video. It is focused only on Selena’s lips, in sparkly gloss. She smiles, bites her lips, & plays with her elegant, almond-shaped nails. It’s undeniably sexy.

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Selena’s Instagram, however, hinted that something else was coming – a project with Petra Collins. It was only right to assume that it’d be a full music video. The sneak peeks at the cinematography were…very different, let’s say, than the images provided for the lyric video. Selena looks somber; vague. She doesn’t look as though she’s completely aware of her surroundings. It’s misty. She looks as though she’s trying to find something she’s lost.

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I remember the day the video came out – I talked with a few friends about it. We admired the video as well as the photographs (also taken by Collins). My sick friends & I talked about how eerily relatable a lot of the video was. This was not your run-of-the-mill “sexy music video.” There are no bikinis. The almond-shaped manicure, if it is there, is not emphasized. Neither is lip gloss. There are scenes of Selena in a freezer. She looks robotic; it doesn’t seem as though she knows what is going on. She looks in the mirror; she sticks her tongue into an eyelash curler. She’s sprawled on the floor. Sometimes, her hair is soaking wet. There isn’t much smiling, but when there is, it’s eerie – it doesn’t seem to be from happiness.

Confusing, right? People had speculated that this song was about past relationships. After watching the actual video, I didn’t think so. Neither did my sick friends. We thought it was about the relationship between a sick person’s body & mind – & how it is a continuous push/pull, love/hate relationship. You do odd things & scary things. You don’t always know what is going on. You can come across as being scary, when in reality, you are trying to stay alive. Your normal is someone else’s nightmare.

This is in no way meant to glamorize illness. I don’t believe that was Selena’s intention, either, if my theory is correct…maybe I’m completely off the mark, but I don’t think that I am.

But why do I think that I’m right in assuming that Selena’s “Fetish” video is about her illness? Because of an Instagram post she made very recently:

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Selena’s fans have been speculating about her absence from the pop culture world. She hasn’t been promoting many of her new projects – she’s been recovering. From a kidney transplant.

When I saw this post, I had to sit back for a second. I truly do believe after seeing this that Selena’s song is about dealing with her illness. After sitting back for a while & tying my own experiences into what I took from the music video, I came up with this:

this past year i was VERY sick – whole sophomore year of university. i lost about 20 pounds. i was on chemo pills. at one point, i was having surgical procedures every 4 weeks. i woke up from one feeling like my throat was on fire; i couldn’t breathe. i was confused because the procedure had nothing to do with my throat. i asked the nurse why. she said that i was so thin, my heartrate scared the doctor. they were afraid i’d die on table. so they intubated me; hence the sore throat.

i remember being in my bathroom at school, on the floor at 3 a.m. sobbing, SCREAMING. once, my mama was afraid because i’d texted her that i wanted to die, but i fell asleep before i could tell her i was ok. she thought that i was dead. i woke up to the cops at my door.

i did very weird things with my body. i still do. i move & dance in odd ways. in march, i stared at my naked body in the mirror & i PUNCHED the right lower side of my abdomen. i punched hard. that’s where my disease originates. i secretly hoped something would rupture. i wanted to die.

i have memories of being zoned out on pain meds; listening to the doctor telling me that my disease had given me arthritis. i would no longer be able to be a violinist. it was this weird, hazy, dream-like state. sometimes i feel like i am still in it. my illness is still here, after all.

in this video, selena’s staring at herself in the mirror. she’s on the floor a LOT. she’s almost always inside/near a bathroom. she’s sick; she’s twisted, yes. she bites a lipstick; she puts her tongue in an eyelash curler just because. when your body is going to shit, your tongue doesn’t matter. who cares if you’re in a subzero freezer, eyelashes brittle, smile frozen, when it doesn’t matter in the end?

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you can try to push away illness out but it WILL come back. chronic illness has a fetish for your body. it will always be there, no matter what.

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i don’t know how to close this. i’m trying to say that this is a very raw perspective on chronic illness. it’s an ugly, twisted, experience. on the floor in a beautiful dress – that’s wet from a shower you were too weak to undress for. you can still throw a party, though – & you will be the life of it. 06-fetish

i read selena got a kidney transplant this summer. i cried. then i wrote this.

“Can’t see a point in blaming you/If I were you I’d do me too” is probably one of the most significant lyrics in the song (for me). Why?

First off, the song in no way glamorizes sickness or illness. We see Selena in despair, we see her in distress, we see her in pain. There is no implication – at all – that Selena’s “experience” inside this random house is enjoyable, glamorous, or, God forbid: “cute.”

However, those lyrics are the ultimate sarcastic laugh at one’s own illness – something I can relate to in some capacity. Of course you picked me, I think. Why wouldn’t you? That’s because the way I look today…I’d pick me, too.

I am sending my best wishes to Selena as she recovers. A transplant is a devastating shock to the body, & it is an extremely difficult thing to recover from – both physically & mentally.

However, Selena speaking so frankly about her illness (& transplant) brings me hope – hope that more celebrities will speak up about their illnesses. AS more celebrities speak up, more “ordinary” people will speak up. I have hope that chronic illness – invisible or otherwise – will become more widely discussed in the upcoming years. I want to be part of it. I am trying my very best to do so.

Love,

Sof ❤

Side note:

THIS IS IN NO WAY MEANT TO GLAMORIZE CHRONIC ILLNESS. As someone who has spent many nights on the floor of their bathroom, crying in pain…I promise you that. I don’t think this music video glamorizes it, either.

I am self-injecting the 4th dose of my medication this afternoon. My blood levels were dangerously high or low when I was on other medications. This one is seeming to do the trick. My blood has stabilized. I am working on gaining energy & weight. This will take time, but seeing public figures speak so frankly about their personal experiences with illness – no matter how small or severe! – helps remind me that I am not disgusting, weird, or odd for having what I have. I got a wild card. So did Selena – so did thousands…millions!!! of other people.

-S

Diary: I AM VERY SICK! & Now That I Have Your Attention – Please Read This! (No, It’s Not Clickbait)

Hello friends! This is just a short diary post & a quick life update.

I am still working! Still working hard at a “real” job. It is very hard; I’ve had some issues with fatigue & treating my hands properly. Since I am now arthritic, it doesn’t take much to get me into an arthritic flare. Usually, I am triggered by cold temperatures. Right now, my circulation in my hands is very bad because of the flare – the inflammation cuts circulation off to my fingers, so they look white or blue much of the time.

Why am I telling you this? For pity? Clickbait? No, definitely not. I’m trying to speak candidly about my illness(es) & raise awareness for them.

I just put out a few resources last night: here’s my YouTube video, titled “My Illness Is Not Your Inspiration!!!” Here’s a short introductory clip – click here to watch all of it. I really hope you do. Disabled or abled, young or old, I hope all of you can either learn something or feel like you can relate to what I am saying (here is a link to the full thing).

Have you heard of Hospital Glam? If not, you should check them out here (on Tumblr)

What is #HospitalGlam? According to the Tumblr:

“#HospitalGlam is a movement for and by people with invisible disabilities that started by appropriating fashion imagery and reinserting it into medical environments using bodies that don’t outwardly present as sick or disabled. #HospitalGlam is about contextualizing ourselves inside an often alienating environment in order to assert our rights as patients & better our treatments. By taking #HospitalGlam photos and posting them on social media, patients increase awareness in their communities and with doctors.”

I cannot emphasize how much#HospitalGlam has given me confidence even when I felt like I had none. It allows you to pretend to be confident. By pretending, you become more confident. This is something I truly believe. Here is something I wrote a while back, pertaining to #HospitalGlam:

“i have crohn’s disease & inflammatory arthritis. these illnesses have crushed some dreams & have ruined many a date/outing/even a vacation. i am not proud of my illness, but i am proud of how i have come to deal with it. every day is a learning process. i still cry many tears over it – i still get angry about the cards i was dealt. but if someone had told me two years ago that i would have shaved my head, dressed up in high-heeled boots & fancy sunglasses to go to a doctor’s appointment – then POSED in front of a chart of the digestive tract…i would have laughed in your face. this seems to be a common thing. the old me would have laughed at the thought of me even daring to do such a thing.

i am proud of the progress i have made – if not physically, then mentally. these are issues that will affect my personal life, my careers, my schooling, my relationships…for the rest of my life. i get joy & confidence for a moment when i make a “glam” pose in front of something that is so funny! no! crohn’s is not a “bathroom disease” – it is a serious, sometimes life-threatening one. some things are getting better, others are not. but my mind is healing, & every day, i learn more about myself, my illness, & how to deal with it. i am grateful for the friends & connections i have made. i am grateful to have a family that supports me. i am grateful to have gotten out of a situation with a manipulative doctor. i am heartbroken over a diagnosis i got over two years ago, but i am still grateful for what i have today. it has shaped me as a person. like it or not, i will give my disease that. for better or for worse, i have learned to be as unapologetic about myself & my illness as possible. & i love myself for it. thank you for creating a platform that inspired me to flaunt my beauty – because beauty is present…even in chronically ill or disabled people! how about that. much love.”

I hope you check out #HospitalGlam’s Tumblr! They are an amazing resouce for people with invisible illnesses. I also encourage abled peopel to take a peek. We can’t continue to raise awareness without abled people listening, learning, & sharing our experiences.

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Much love to all of you! I’m continuing to learn & I hope you are, too. Stay tuned for some posts containing my own writing – mostly pertaining to chronic illness, but also on other topics! Remember: I’m more than my illness & all that, yeah?

Also: check out the hashtag #DisabledAndCute on Twitter – it is filled with lovely photographs of chronically ill/disabled people showing off their beauty – whether in a hospital or out. It’s a great movement, & one I always talk about when I can.

 

I am trying to remain positive despite everything. September will be a hard month. I should be at school, but I am not. That sucks – but I’m making a great effort to make connections with people, meet new people, love new friends/people – & old. I know that I will come out of this a better person.

Have a lovely Friday (& stay tuned for Fenty Beauty reviews when my products arrive).

Love,

Sof ❤

P.S. Don’t call me strong 🙂 or inspirational 😉

P.P.S. I am trying to make more YouTube videos, but have no earthly idea of what topics I should cover. Suggestions appreciated!

It’s Been Two Years Now, & Things Are Different

Hi, it’s me.

I don’t have much to say here; there’s not anything that requires analyzing or detailed explanations, because it truly boils down to a few things.

The first surgical procedure I had was in May 2015. While in the OR, my mama called Make A Wish. She asked them what they could do for me. I woke up with no knowlege of her asking them.

I wonder why, sometimes – but others, I don’t. Make A Wish is associated primarily with kids with cancer. No doubt about it…pediatric cancer patients make up a huge portion of Make A Wish’s grants. But cancer is not the only illness someone may have to “get the Wish perks” – which, by the way, is a gross statement. It implies that someone’s physical suffering they’ve endured for years can be made up with a single “wish.”

I think that if my mama had asked me if I wanted to apply, I would’ve said “no, absolutely not.” I got diagnosed a few days after my procedure; everything went on hold & a lot of things happened at once. I was angry, sad, in denial – going through the first large grieving process of my life. I didn’t want to be associated with my illness. I was ashamed of it, & I was angry at it for taking away things that I wanted.

But – my mama did not ask me if I wanted to apply. She did the paperwork, got a doctor signature, & presented me with the open option: want it, or not? I thought for 12 hours; I really did!!!

I didn’t know how to feel about being “a wish kid.” Was I sick enough? Was I delicate enough? Isn’t this just for people who have terminal illnesses?

First of all: Make A Wish is not only for children/teens that have terminal illnesses; others can include Crohn’s Disease or any other progressive, degenerative or malignant condition currently placing the child’s life in jeopardy.” AKA: you’re eligible for getting a wish if you have any life-threatening condition & are between 2 12 – 18 years old.

At the time, I still was unsure as to whether I should accept. There was guilt, there was denial, there was fright. But for God’s sake, I wanted to meet a band who’d brought me joy & laughs when I was in hospital beds. I especially wanted to meet Harry Styles.

By mid-summer, I got a phone call that left me crying – I would go to a concert to see & meet them backstage.

What I experienced that day was a whole 24 hours of pure, unfiltered joy; excitement, nerves, & happiness.

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I stayed in the room with the boys for about 15 minutes. That was more than I’d ever thought I’d get – & I left clutching a piece of paper with a doodle on it, after gifting Harry a scrunchie.

Today’s the 2-year anniversary of the day I met One Direction (sounds like a YouTube storytime title). I am a very, very different person.

I’m skinnier, I have less hair, I feel like I’m being crushed sometimes. But I have the same smile, I have the same flashes of joy, & I am years wiser. I have grown to love & accept my sexuality. I’ve learned not to even blink when an IV needle is threaded. I go into surgery with no problem (I do come out crying). I’m more world-weary, I’m tired, I’m sad.

My illness took a lot from me the past year. It took some relationships, friendships, & dreams right out of my hands. I can no longer play violin professionally (see why here). That broke me. Many things have broken me the past two years. It is why I dance outside in the sunrise; it is why I stay up at night, wondering what will become of my future.

Like I said – things have been snatched from me these past two years. I was violently dropped on the floor of adulthood at age 17 when I was hospitalized then diagnosed. It’s influenced the way I behave, the way I act, the people I associate with, & a lot more.

People have told me pain gives you an old soul. Maybe so – maybe not. But something that’s kept me going these past few years is bringing my mind back to those photos in that special file on my computer. I see how happy I looked in the photos; I can sense how joyful I felt. Every time I remember that, I am reminded that life can be cruel, horrible, terrible…but there will be flashes of sunshine. Some will last a long while. Others will be brief. But the 24 hours I spent preparing for “my Make A Wish” & then actually experience it are hard to beat.

I felt joy, love, & acceptance from people I’d never met before; from people who hadn’t known I existed. These people were ones I looked up to, & they treated me with the utmost kindness & respect.

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Before I left the room, I asked for Harry to draw me a small tattoo. He did. I fought for about a year to get it, but I got it. It’s a positive reminder on my body that this was something that happened…to me!!!!!

Don’t get me wrong: I know I’m still sick. That wish did not cure me – no wish can cure anyone.

However…I felt the thing that I believe Make A Wish wants the children & teenagers to experience: happiness, no worries, & yes, pure joy for however long their wish lasts.

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I have a reminder on my body, but I have more vivid ones in my head. I don’t believe that I would be sat here writing this if I hadn’t had a wish – I don’t know what I’d be doing at all, actually.

That’s kind of my point, though: I know some of you came for the One Direction photos. They’re amazing photos & I love them. But it means a lot more than some posed photos – it means that I can experience horrible things & still have joy in my life – & that my life is worth living because of those fast, fleeting (or beautifully slow) moments of joy.

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So, thank you to those who’ve followed my journey these past few years. It is still very surreal to me. Thank you to everyone new who found me through chronic illness, photos on Instagram, or any other social media. I hope I’m able to provide you with some comfort by trying to reassure chronically ill people of their worth, especially young women. If people hadn’t initially reached out to me on social media because they found out I was a “Make A Wish Kid,” who’d met One Direction, I highly doubt I’d be speaking so openly about my illness. I felt like I had something I could give to people; something that would help people. It took a lot for me to step up, but again – in time, I was able to proudly say I’d met them through Make A Wish, after working hard & trying to accept the labels “chronically ill” & “disabled.” Thank you for listening to me & reaching out for support, or giving me support. I appreciate it so endlessly!

Thank you to One Direction! Thank you to Harry Styles. Thank you to Make A Wish – I needed what you so graciously offered me, & I am so glad I accepted it. It’s something that has a special space in my heart.

I’m just very glad to be sitting here writing this right now. Thank you, thank you, thank you. To all the sick people out there wondering if they deserve a wish, let me answer the question: Yes, you do. You deserve that times a million.

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A special thanks to my mama, who knew exactly what she was doing when she secretly called Make A Wish. It would not have happened at all, were it not for her phone calls & endless support. I love you.

Love,

Sof ❤

If you’d like to donate to Make A Wish, you should do so here! If you think you’re eligible, trot on over here.