“#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 ❤

NEVER HIT SKIP: The Albums That Are Too Good To Skip Through…Yes, Even That One Song.

It’s diary time! I wasn’t sure what to write about for a while; I have, however, recently made a playlist of some of my favorite albums: albums that I cannot bear to hit “skip” on. Do I not like singles? Or just one song? No, of course I do! But – liking a whole album in its entirety is a special thing, I think. I’m a big fan of albums that I can listen to from bottom to top, backwards & forwards, through & through & through. To me, it’s the ultimate sign that I will never stop listening to ___ album; that I’ll associate it with important events or people. These albums, in their entirety, provide a rush of emotion & color.

Some other contributing factors? Well, I have synesthesia, though it’s not crazy powerful. I can’t see colors in front of my eyes when I hear a single note, but I associate colors & textures with certain songs, pieces, or albums. If I hear a song, piece, or album & immediately start strongly associating it with various colors, moods, textures, color scales, etc., I know that I’ve found an album that speaks very strongly to me. Same goes with crying, believe it or not – oftentimes, I think one of the best signs that an album is a good one is that it prompts emotion. I’m all about music being an emotional outlet, & I listen to all types. They all provide me with relief, joy, happiness, melancholy…anything that I am feeling, I can find some music that helps me put a soundtrack to my life, no matter how happy or sad it is in that moment.

I listen to all types of music – a lot of classical, really. Makes sense, given my music background, but if I shared a top ten list of classical albums that I like & told you why, you’d be still reading, 12 hours later. It would take forever, & that’s what I use my musicology classes for. However – if you’re interested in getting some classical recs, don’t be afraid to hit me up on my socials! (Instagram, Twitter

Here I present: The Top Ten Albums I Can’t Hit Skip On (& Why) ***in no particular order. Also: here’s my Spotify. Feel free to follow me, check out my playlists, or do both! Or…do none. ALSO: I’ll be putting a few personal photos after each mini review of each album. Some will be photos of me listening to ____ album while doing something; some will be photos of things I associate with ___ album. Enjoy!!!!!!!

Some Nights – fun. 

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I was quite young when this album came out. I remember being at Interlochen Arts Academy Summer Music Camp as a violin student & going to “mixers” (you know the deal) & hearing the song “We Are Young (ft. Janelle Monae.” That’s when I first started associating it with positive events in my life. I continued on to hear the whole album. When I left Interlochen, heartbroken, (as one is after summer camp) the sadder songs served as emotional outlets. The fast-paced ones let me go on long bike rides. It was one of the first pop albums I listened to through & through – & I cried more than once. Okay, maybe I still do…but remember: tears while listening to or playing music are okay!

My favorites? Well…”We Are Young” of course. I adore the “Some Nights – Intro,” & how it seamlessly melds into Some Nights, the song itself. There’s an incredible amount of emotion bottled up in both those songs – both extraordinary opposites when it comes to style, but lyrically, almost identical. “Out On The Town – Bonus Track” is another favorite. One of those melancholy breakup songs you can cry to.

As a whole, this album incorporates a lot of different instruments & sounds, as well as featuring other artists. It works as an album, & all the songs work by themselves, too. It’s emotional, exposed, & I fondly think back to my 15 year old self when I turn it up loud once & a while.

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15-year-old Sofia was a strange bird.

808s & Heartbreak – Kanye West 

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Obsessed with everything surrounding 808s & Heartbreak – did you know that the cover art was designed by Virgil Abloh (designer, DJ, & founder of fashion label Off-White), Willo Perron (a disciplinary director & designer)  & drawn by pop artist Kaws? The album also heavily features the Roland-TR 808 drum machine – hence the inclusion of “808s.” What Kanye didn’t know until he’d already figured out the album’s name, however, was that Hawaii’s area code is 808 – & the Avex Recording Studio in Honolulu, Hawaii is where Kanye recorded the majority of this album.

Everyone fights me on this – but I truly do think that 808s is Kanye’s best album. Again – lots of raw, pent-up emotion. Kanye, for the first time, actually sang…but used auto-tune. This provides a somewhat distant, robotic effect while contrasting with the emotional lyrics & melancholy background music. It’s eerie in the best way possible. My favorites are…all of them, really. “Say You Will” & “Paranoid” are almost complete opposites, but I love the lyrics & drive behind both of them. My favorite, of course, is “RoboCop” – I don’t know what it is about this song, but it speaks to me. It’s very colorful – lots of neon lights, blue lights, disco balls…that kind of a mood. “Pinocchio Story (Freestyle Live)” is also a great one: it truly is a live performance; there are cracks & dips in Kanye’s voice, & screaming fans sometimes make the lyrics hard to hear. Some are annoyed by it. I, however, love it. It reminds me of the sensation of performing; what it’s like to perform at your most raw in front of huge crowds. It’s an adrenaline rush, & it’s bitter-sweet.

I hadn’t heard this album until around November of last year (2016). I was going through a rough emotional time & there were a lot of lonesome listening sessions with this album in my ears. It brings back a lot of bitter memories, with a tang of sweetness. It’s funny how sometimes, frightening & overwhelming things can happen to you…but they turn into an elaborate memory, reflecting feelings, smells, foods, & so many more things that you thought of or consumed or felt at that time. So: I’ll say it once, & I will say it twice – I’ll say it 100 times if I must. 808s & Heartbreak is Kanye West’s greatest album.

Pure Heroine – Lorde 

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Okay. My obession with Lorde started when I heard her first song on the radio, late sophomore year of high school. That song, of course, was “Royals” – I looked up the music vidoe & was struck by this tiny, intense, curly-haired girl with a stare that could kill. The super minimalistic visuals of the video intrigued me, too. Lorde was mysterious, & so was her album – Pure Heroine is a teenager’s album, filled with an assurance, a sense of command, confidence, & times of freedom – & frustration. Her lyrics are rich. There is so much to dive in when looking at Pure Heroine. I dove in, alright. People started telling me I looked like Lorde: greeny-blue eyes, fair skiny, bushy, long hair…I embraced it & started putting on purple lipstick (the cheapest one I could find; a dark violet Revlon lipstick from my grocery shop’s cosmetic aisle), fluffing up my hair by letting it air-dry, wearing black, & developing a resting bitch face. I owe it to Lorde for people telling me I seem scary – I also owe her for helping me win my music school auditions. Songs like “Bravado,” “Tennis Court,” & “Swingin Party” helped me remember that I was worth something – they also allowed me to let my stress & emotions wash through me, rather than consume me. It was the soundtrack on airplanes, car rides – everywhere I went. I had finally found someone who was a “pop star” that I could identify with. She was human, she was odd, she danced weird. She didn’t care – & people loved her for that. Lorde was one of the best musical discoveries of my teenage years – no two ways about it.

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Yup – I dressed as Lorde for Halloween when I was 16. My proudest high school accomplishment? Winning “best celebrity lookalike” & being compared to Lorde. An exciting Moment In History.

Harry Styles – Harry Styles

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Need I say more? I am what they’d call “a Harrie” – meaning, Harry Styles was my favorite One Direction member. I followed 1D’s every move when they were touring & recording – when I got sick, I asked to meet them through Make A Wish…& when I (most luckily) got the chance to do so, I ran straight to Harry. I have a tattoo on me that he drew for me. His fashion is something that truly inspires & encourages me to develop my own style. His kindness & love for the LGBT community is something I hold close to my heart, too.

As you might be able to tell: I’m a big fan, yes. Yes – of course I went to see Dunkirk! (It was good just as a film, too. Don’t worry) Of course I bought his album. Of course I’ll be seeing him on tour next year! 

But, seriously. I was extraordinarily excited for Harry’s solo album. I wanted to hear more of his individual vocals & lyricism – & oh boy, did I get both! Some of the album sounds like classic British pop or rock. Others, like “Carolina” (which is about me, by the way…I’m Townes), are a bit of a tongue-in-cheek country song; “Woman” is an odd yet satisfying experience. Nothing can beat that quack noise in the background (but really, it’s a lovely song). I especially feel close to “From The Dining Table.” The lyrics are simple, but it feels like Harry is very up close to the mic – I almost get ASMR tingles when I listen to the song with the volume up. The subtle harmonies that actually do reach a climax contribute both to the delicacy & the power the song has. As for “Kiwi,” well…need I say it? HAVING YOUR BABY!!! NONE OF YOUR BUSINES-

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Taken while listening to “Two Ghosts.”
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Taken while playing “Woman” – look! I have hair!
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On my IG: taken while listening to “From The Dining Table”

Depression Cherry – Beach House 

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Now…who doesn’t love some Beach House? Yes, some of their songs kind of do sound the same after a while (with some excellent exceptions), but the focus on background music playing just as large (if not larger) a role as the vocalists is extremely striking. Definitely a great album to listen to when crying. The lyrics can be hard to hear at times; the music can really get that loud & sometimes words are slurred for effect. If you really want the real deal, look up the lyrics before bed, then turn off your lights & have some melancholy me time.

This sounds like I’m bashing the album – I swear I’m not! Each of these songs is special to me. Another great album I was listening to through my tough time in November. “Space Song” is on every aesthetic Instgram video ever, but that doesn’t make it not good – I’m still not annoyed! I would say that my two favorites are “Levitation” & “10:37.” In “Levitation,” strings give texture & urgency to the line, while the gentle vocals allow the listener to lay back. The lyrcis are beautiful, but can be hard to hear, like I said. In “10:37,” the gentle but steady drum beat(s) provide comfort & safety; the vocals contribute to it. It’s a warm, gentle song – a beautiful experience.

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Back at home for Christmas break was my prime time for Depression Cherry… 
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….& even before I left, the dark days & oddly glowing sunsets of winter, coupled with my blue mood…made Depression Cherry a soundtrack of my life at that moment in time.

Blonde – Frank Ocean

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The album that made me want to die my hair this color (I’m only kidding a tiny, tiny bit)

Well – of course! I was first sucked into the Frank Ocean hype when “Super Rich Kids” was everywhere – but it’s been years, & we’d all been clamoring for the next album. It even became a meme. The wait was worth it, though: all of these songs boast a variety of styles & effects. In “Nikes,” for example, Frank’s voice is sped up. It heavily contrasts with “Futura Free,” in which Frank sings in his natural voice about how lucky he has been – but also about how hard he has worked, & how he & his family deserve what he’s gotten thanks to the talent he possesses. “Be Yourself,” a track simply consisting of a recorded voicemail message from someone’s mother, calling her child at a university. The mother is telling her child not to “do that cocaine” or marijuana, & warns the child about “weedheads” & the danger of alcohol. Of course – substance abuse is always going to be a “thing” for parents talking to their children…& yes, you should be careful with what you put in your body. In this context, however, the 1:29 track is simply a humorous interlude to some more intense tracks.

Overall, Blonde was worth the wait – truly! It combines angst with humor; rapid sequences of lyrics along with one or two words repeated for a single track. There’s something for everyone in this album – & all of it is for me.

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September 2016 – last year, basically. I even played Blonde in my elevator.

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ANTI – Rihanna 

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Oooh. Yes.

I’ll admit – it took me a full year to really get into ANTI. I didn’t understand the flow of the tracks at first…still, I kept coming back to it. In the end, Rih did not disappoint – when does she ever? Famous features like SZA & Drake pique the interest of other fan bases – & yes, the songs with those two are great. In fact, it’s how I found out about SZA. Songs like “Desperado,” “Needed Me,” “Pose,” & “Sex With Me” are some real anthems of empowerment; of the beauty of independence; of the marvel of self love. Meanwhile, tracks like “Love On The Brain” are for the tenderest of moments; it feels much older than it actually is. Then – what better song to listen to than “Kiss It Better” with your crush, just to give you that extra boost of confidence….? Try it.

It’s a good album. I’m very sorry it took me that long to appreciate. But now, I appreciate it with all my heart. That counts, right?

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The real hours of ANTI – adequately expressed in this sign in a restaurant.

Yeezus – Kanye West 

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I only knew about Kanye West from the Katy Perry song more than a few years back: “E.T.” Oh – I knew about & liked “Mercy,” but he only had a few verses in it; it was more of a collaboration type of deal.

I heard about the Yeezus album on – believe it or not – NPR. Yup! Fresh Air (an NPR show) didn’t interview Kanye, but they did play one song: “Bound 2.” That was the first song that I truly ever heard Kanye as a solo artist, not a collaborator. I was intrigued by the mixing of retro tracks with new verses by Kanye himself. I loved the cover art. I was…taken aback by the music video Kanye made with Kim Kardashian (I was still young…okay?). But most of all, I was intrigued. That’s when I really started getting into listening to beats of songs. Yeezus flows exquisitely well, in my opinion. There are some intense – almost horrifically intense – songs like “On Sight,” or “Black Skinhead.” There are others like “Hold My Liquor” – this song combines some of the melancholy heard on 808s with a heavy, sometimes screeching beat, along with aggressive yet emotionally expressive lyrics. I was intrigued at how “Bound 2” seemed to be a goodbye to the world; a hello to his wife (wait, were they married then?) & the children they would soon be having. I like to think of it as a great depiction of how meeting someone you truly end up loving makes you feel – normal things are beautiful. “Red cups on the lawn,” not telling your mom, speaking about infidelity as well as loyalty. It depicts a faulty yet loving relationship, in my opinion – sure, told from the standpoint of a man, but nevertheless, Kanye’s right – sometimes you don’t remember the day you first met; that’s okay. It’s also okay to write a song about it being okay.

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The days of Yeezus – especially “Bound 2” were in the Adirondack mountains, summer of 2015.

Mind of Mine – Zayn Malik 

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Zayn Malik has not been…the most politically correct these past few years, let us say. He was the rogue – left One Direction, broke all our hearts, & went out & got cozy with Gigi Hadid, reinvented the importance of Twitter celebrity feuds – & released an album that knocked me speechless.

No, I’m not a fan of all Zayn has said & done. But his album is objectively good – “Pillowtalk” was a great single – both visually & musically appealing. His track organization was meticulous; each song flows into the next – literally. Each song ends with the beginning of the next song. Like I’ve already said – I have a weakness for that kind of album style. Each & every song from the album is pleasant to listen to, but all together they are a journey.

“Pillowtalk” will always be iconic for me…but “dRuNk” (thank you, quirky type style), “INTERMISSION: fLoWer,” “BLUE,” “BRIGHT,” & “SHE DON’T LOVE ME” all touch me in different ways. It’s a good album to listen to when you’re in your feelings. Zayn’s been flying quite low since he dropped his album & did a promo tour…who knows what he’s up to? I certainly don’t – but I do know that Mind of Mine is an excellent album with a great flow.

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At arcades, blasting Mind of Mine.

Melodrama – Lorde 

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Okayyyyy. Another album I waited for as eagerly as I did Frank Ocean’s. No…that’s a lie. I waited even more eagerly for this one. Like I said – Lorde is someone I really identified with – I still do. I wondered if she would be able to capture the sensation of late teens & early adulthood. That was the night before she released “Green Light” as her first single. The next morning, I woke up feeling like I should go dance on top of a car, or a roof…a strange bathroom. It was different, it was new, but it was undoubtedly Lorde. It speaks volumes when an artist’s sound changes subtly yet powerfully. There was no major “rebranding” here – no new lifestyle, no drastic changes. Lorde – or Ella – grew up. She cut her hair, she didn’t wear purple lipstick as much. She went through a big breakup. She vomited outside house parties. She was living & dying – every night. I could identify with that – big time. Melodrama was this year’s summer album, & it’s an album I’ll associate with this specific time for the rest of my life.

As for favorites? When people ask me, I have no idea what to say. They’re all uniquely appealing, & at the end, it depends on what I feel like that day. Sometimes, “Hard Feelings/Loveless” is all my soul needs. Other days, I need to cry to “Liability.” Some days, I want to dance on a rock in the middle of a creek to “Green Light” – & yes, I did that the other day…all by myself. It’s what she would do, isn’t it?

Lorde gave me some real material here – coming-of-age, romanticizing normalities, being more open & vulnurable with those around you. Making closer friends, not trying to increase the volume of friends. Realizing that loneliness can be beautiful, & sometimes a walk (or dance) down your beach/sidewalk/street/nearby mountains all by yourself is exactly what you need.

Lorde cut her hair – so did I. We both experienced crushing life events over the past few years. So did all of you. Lorde’s writing is now infinitely approachable – who doesn’t feel like a liability at least once in a while? What college student can’t relate to “Perfect Places” even in a small way? Why wouldn’t you want to feel dangerous & beautiful by turning up “Sober?” Don’t forget about Supercut – it’s raw, it’s real, it is infinitely emotional.

I was lucky enough to have the money to buy tickets to see Lorde – or should I say…one ticket? That’s right! I’m going by myself, I’m sitting in the nosebleeds, & I wil dance my heart out. It has long been a dream to attend a Lorde concert; I was sad I didn’t have my shit together to do it last time she came around. This time, however, will be better. More songs…more to talk about. I can’t wait. & I love Melodrama. Did I say I love Melodrama?

That’s it for the diary – for now! Let me know via social – or the comments! – what kinds of personal entries you’d enjoy seeing. I love being inspired by you, & I love feedback! Also: tell me your top 10 “never hit skip” albums – or just one album. I’m always looking for new ones.

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5:30 a.m…..
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…9:30 p.m.
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A “Supercut”

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!

Diary: My August Was Different This Year, & My September Will Be, Too

August – the month of preparation, excitement, adrenaline! High school students don’t like it; college students are elated to get back to their home away from home.

I never liked high school & always kept myself busy with my violin, focusing on the fact that once I made i through high schoool, I’d be in school doing something I truly loved. My first two years of university were not easy, but I did them – despite being sick, being hospitalized, & dealing with some other personal issues not related to illness. Even though I’d often collapse at the end of the day, it was worth it – I loved every minute.

I’m writing this 2 days before the beginning of September. If I were “normal,” I’d be preparing my things, moving into my place, & getting ready for my courses. This semester, that’s not happening. I’ll be at home, trying to get stronger so that I can come back full-force in January.

I’m not going to lie; it’s been really hard. It’s been hard seeing people I know & love go to university for the very first time. I remember how excited I was, all the good times I had, how hard I worked – & I get sad & angry, because it’s not fair that I’m in this situation.

Seeing people get so excited about school also motivates me. It reminds me that university is the happy part of my education. Sure, I no longer can do what I was expecting to do – but there are infinite possibilities. I can take some of the time I have this fall to narrow some of those possibilities down.

Here’s some love for all the people who have been pushed down this fall – the chronically ill people who can’t make it back to school. I am sorry you’re having to deal with this. It’s unfair to have your plans foiled by your own body.

I’m taking this opportunity to, yes, be sad…but I’m also trying to write more, listen to more music, go for longer walks. I’m taking an online class, & I’ll be keeping up my reading, too.

I’m allowed to be sad about this, because it sucks! I also have to remind myself that it is important I look ahead, too. If I don’t, I’ll just get stuck in a funk. Those are no fun to be in – even less fun than not being able to go to school.

I’m still a music-lover, I am still creative, I still love writing, reading, & I love the school I chose. This is just reboot time. It’s not okay, but it also is – & if I focus on the not okay parts of this, I’ll never feel positive about the situation.

So – love to all of you going away for the first time! You will have a tremendous time, filled with new people & new adventures. Love to all of you returning! I am sure you cannot wait to get back at it.

&, most of all, love to those who desperately want to go back this term, but simply cannot. You are taking care of your health, & it is not an easy thing to do. I love & appreciate you all, & I understand that it’s not ideal. But this reboot might save you – & me! – some serious pain & even hospitalizations down the road.

It’s going to be okay, even when the situation is not.

I love you all! Happy back to school.

Love,

Sof ❤

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.