Two Movies I’m Glad I Saw This Summer

~If you don’t like spoilers & haven’t watched Baby Driver or Dunkirk yet, this probably isn’t for you. Scroll on!!!~

I love movies! I am very picky about the movies I love. That’s why I was so surprised to see two really enjoyable movies (only one day apart) this summer. I usually skip out on theater hype, since, in my experience, it’s not really been worth it.

Baby Driver

The first movie I saw was Baby Driver. I went in without really knowing what to expect – I just knew it had Jamie Foxx & Ansel Elgort…& Kevin Spacey. I read a tiny bit on the concept of it & found it a bit eye-rolling: kid uses music to cope? Okayyyy…

But truly: it was done very well. Almost every shot in the movie is coordinated to the drop of a beat, the high note of a song; it’s almost like you’re watching a music video…except it’s an hour & a half. I mean this in the best way possible.

I also really enjoyed how Baby was just kind of doing his own thing, dancing to his own music & tunes. It’s something I’ve started doing (I mean dancing in the street or in the car, not doing criminal getaways) & have found that it’s an amazing positive stress reliever. I loved how perfectly the soundtrack coordinated with the mood & action of the movie. I love the soundtrack, period! Seriously: download it on Spotify; it’s a winner.

Overall, I think there was some potential character depth that could’ve been explored – but the visuals & coordination to music was what made this movie so unique & worth watching. Ansel’s cute!

(Lily James though…oohhf!)

Dunkirk

I am not one for war movies. I’m not one for Christopher Nolan movies, to be quite honest: I never got into The Dark Night, etc. But when Christopher Nolan pairs with some of Britain’s most renowned actors to recreate a battle from World War II…on location….IMAX 3D….Hans Zimmer on the score…& Harry Styles as a supporting act.

Would I have seen this movie if I knew Harry Styles wouldn’t be in it? Good question. He definitely made me seeing Dunkirk a priority – I was curious about how he’d perform & interact with the cast (I wasn’t let down!). I doubt I’d have seen it opening weekend if he weren’t in it…but who knows? There were several other actors – Kenneth Branaugh & Mark Rylance – that I really respect & enjoy watching. With the good reviews it’s been getting, I probably would’ve liked this one.

I really enjoy accurate detailed historical documentation of certain events; I think it’s how I get to learn & store a lot of things in my brain. I have to say this was a reenactment that felt very raw; very real. Of course, there are explosions – it’s a war movie – & of course, there’s drowning & bombing & running & all that. This is just done somewhat differently.

There’s a lot of helicopter shots of the beaches of Dunkirk; there’s also a lot of amazing footage taken in a fighter cockpit. Truly – seeing the cruising plane near the end of the movie, with the skyline tipping back & forth, beautiful soundtrack to support – it’s an emotional experience. The film relies heavily on these visuals to provoke emotion, in my opinion. I’m not complaining, don’t worry!

What did I enjoy about Harry Styles’ performance, you might ask? Well – I’m glad he had an acting debut with a part like this. Styles is absolutely not the epicenter of the film. We don’t get those sexy close-up shots paired with winks, sexual implications, or love interests. Styles is just playing Alex, a soldier, who wants to survive the situation that he’s been thrust into.

I’d go so far as to say Styles’ character was extremely unlikable – & to me, it is a testiment to Styles’ acting that I truly did dislike the character. It didn’t feel forced or overdone. It was done really well, in a convincing manner. & it’s hard to dislike Harry Styles – even when he’s not playing Harry Styles. I disliked Harry Styles in this situation.

I think Styles has some great potential that Nolan (& the casting director) clearly recognized. But there was no “Harry Styles” overload. I think he was treated the same as the other actors in that role type & it shows.

I think this was a great way for Styles to show off his acting chops without having to say (lines) too much. My mama described him the other day as a Renaissance man! I have to say that after seeing his performance, I might believe that.

Overall, however – Harry Styles aside – I truly enjoyed the movie. I’m glad I went to see it. Some of the plane footage reminds me of Roald Dahl’s chronicles of his time in the U.K. airforce – these books were read to me as a child so it was somewhat nostalgic to see this kind of activity displayed on screen, not paper. I think the visuals are incredible; the active is decent at worst; the setting is beautifully accurate: Nolan did most of the filming on the actual beaches of Dunkirk.

I’m wondering if this one will turn up at the Oscars. I’m hoping to see soundtrack nominated; I don’t think Best Picture or Actor(s) are really in the cards. I do think it’s an absolutely worthwhile movie to see. I learned a lot, got a close-up look, felt very emotional at times. It did all the things I want a movie to do…with some amazing actors stuck in there.

That’s all I’ve seen this month! Well, going out to see, anyway. I don’t watch many new films/movies at home, Moonlight being an exception. I tend to rewtach old things- so, I often am behind on the newer movie trend. Seeing two very enjoyable two movies in two days, however, reminded me to keep checking my Fandango. There’s always something great out there – & I want to be some part of it.

What’s next on my list? Not sure, but the film Detroit looks incredible.

What are the movies you’ve been loving this month? Old or new? Why? Let me know!

Love,

Sof ❤

I AM NOT YOUR INSPIRATION!

"You're so strong!" "Thank you for staying so strong!" "I seriously don't know how you do it!! If I were you I'd just wanna be dead oh my god!" "How do you do all this? Superwoman I swear!"

*Record scratch*

Okay, so those are all actually comments I have (unwillingly) recieved from people in real life & people on the Internet.

Look: I know that I may seem strong. Every chronically ill person may seem that way. It sounds like a lot to put up/cope with, none of it is fun – & all of it is stressful. But guess what: I'm not an inspiration just because I'm ill! Neither is any other chronically ill person.

Ever since I revealed that I'd been diagnosed with a chronic illness, people would never fail to say "stay strong!" "get better" or: "You're so strong. Keep it up."

This has always rubbed me the wrong way. Why?

Well, it's because I'm not always strong. Some days, I'm just existing. Others, I'm making the most out of the body I have. Sometimes I will stay up til 3 a.m., crying from pain or frustration – & then I'll see a comment about how strong I am.

It's funny, but when you're clutching your abdomen, lying on the cold tiles of your bathroom floor at 3 a.m., "strong" becomes less & less encouraging to see & more irritating. "DO YOU NOT SEE ME THIS WAY!" I want to yell. But I can't, because they don't know what I do at 3 a.m. or 3 p.m. They see the parts of my life that I broadcast on social media.

Have I cried before a surgery or an IV? Of course! Does that make me weak? No!!! Why on earth would it be weak? It's a genuine reaction of fright – one that is completely understandable & valid.

If crying over an IV isn't weak, then me simply existing as a chronically ill person isn't strong.

I decided to write this piece when I came across the lovely Instagram account of artist Mari Andrew. She posted two pieces of art in quick succession. Here was the first:

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When I read the remarks made on the illustration, I wanted to weep. It was extraordinarily relatable. Because…guess what? Mari Andrew is right. Some days, I don't feel like myself at all. I can get brought down, or I can get bad news from my doctor – & at the same time I'll be getting messages about how strong I am…as I'm sobbing my guts out in the doctor's waiting room.

Basically: this illustration is showing how disabled people become props or medallions to abled people. I've gotten people saying how my illness was a reminder of how lucky they were. I was a reminder that they're privileged.

Uh…news flash: I don't want to be reminded of my own physical & mental illnesses by someone who is able-bodied & of sound mind – someone telling me that my suffering is a cause for their inspiration.

So, if we're really getting savage, that's why calling a chronically ill or disabed person "strong" isn't the right word. No one is strong all the time – I know I'm not. Being sick & getting treatments or surgeries isn't something I do electively. I either put up, or I die. Which one would you choose? Probably the first one. & you probably wouldn't think that you were "being strong" to pick that option, right? That's how it is for me. Some days, I just want to collapse – that's normal. Some days, I want to go out with friends – also normal.

I know that I myself am not "normal" but being told that I'm "strong" implies that I'm a robot; that I'm nothing but some images you can send to friends to talk about my inspirational qualities (if you want to send pictures of me to your friends to tell them how hot I am that's 100% okay). It implies that I'm either more or less human. Neither option is an appealing one.

I also find the statement: "get better!" very very odd. Chronic illnesses are…chronic. There is no "get better." Sure, I can be stable – but after I was diagnosed, there bbecame a whole new normal – & its as difficult & dark & big to navigate through as The Upside Down in Stranger Things. So. Don't call me strong, & don't tell me to get better…because we both know that's a lie!

If you're abled, reading this, & feeling umcomfortable about having described me or some other disabled person as "strong" that's okay. I know that people mean it only with their best wishes & intentions. I know they mean well, but that doesn't mean that it is well. If you've told me this/something like this before, don't apologize or feel badly! Here's a follow-up to the first photo & the story behind it, also by Mari Andrews:

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Again, she says it better than I do. But seriously: the "therapy method" works. I do it with my chronically ill friends all the time! Listen! Say that you care about them & that you're sorry they're going through this. Ask what you can do to help; what you can do to make them feel more in control of a situation – or at least calm them down.

I also love the "no need to respond" text. I do this all the time with my friends. If they're not feeling well, I'll send them something nice but include a reminder that they don't need to respond…because guess what? Some days, people are too sick & not "strong" enough to answer. Sometimes responding to people takes up too much energy & too much of your mental capacity. It's okay not to engage with people – look for friends & lovers who understand that kind of need.

Let's be real: I've been in a bad place before, gotten a few "I love you" or "I am so sorry & I am thinking of you" texts…& started bawling…in the best way possible. These kinds of out of the blue messages are incredible, because they remind me that I am surrounded by people who care about me. That gives me incentive to keep crawling.

Let me just be clear. If you're chronically ill, I won't be offended by any "chronic illness jokes" that you tell me or share with me. I try to find as much humor as possible in certain situations. I share them with friends. My friends share theirs with me. It is a great way to laugh together about things you both relate to. I believe that if I didn't insert at least a little humor into my life, things would be horrifically drab & sad! Sometimes it's fake – but even fake fools me for a little bit.

By the way: I am not saying that people in a dark place about their illness(es)/bodies can just force themselves to be funny. Some people can't – that sucks, but it's also okay. Just know that if you're chronically ill & you want to connect with someone to make a light joke, I'm here for that!

If you're an abled person messaging me about how strong I am to get a painful IV placement, an abled person trying to be relatable & joke about chronic illness, or an abled person being generally insensitive about my condition…bye! Blocked. Reported. Not to say you can't relate…but you really can't relate. That's okay!!! Feel glad that you don't have to relate.

I think sometimes, people believe that I have this extremely positive view on my future & my life; that I have loving relationships with people & that things are always joky, & light-hearted. This perception would probably be described (by the layman, at least) as "being strong."

Let me spill the beans & let you know that you're not missing out. Not one bit. In fact, you're winning!!!!! Big winning. So. Much. Winning.

Here are things you can say to me (regarding my illness)that I would appreciate:

  • Being told that I've helped someone deal with their chronic illness. That's such a great feeling to have!!!
  • Being told I'm cute or hot – but not like "aw it's okay you're cute no matter what you're sick with." We all know THAAAAATTT!!! Just tell me I'm cute. No need to put my illness in there. Being cute or hot doesn't have to be "in spite of anything." Nope – I can just be cute!!! & you can tell me so
  • "Is there anything I can do for you?" "Do you want to just let it out to me?" "I love you, & this is a bad day, but maybe it'd be better if I sent you this playlist I made for you!"

Simple things like that. They don't require much effort. In fact, it's the same amount of effort to say "sending you good thoughts today!" as "you're so strong I could never do it" – & I feel really good about the first one, & really annoyed about the second one.

I'm not your inspiration. I'm not always strong. I've danced on tables, I've gotten too drunk at a party. I've made bad choices. I've made people cry. I've made people scream. I'm not always "a good person." My mama still yells at me for leaving empty cups in my room – that didn't change when I got ill. If my mama can still yell at me about my empty cups, you can definitely just…not…say "the s word" & say "I hope you're doing well today, & if not, I hope tomorrow will be better."

Listen to me. Listen to us. Remember that disabled people are the root cause of so events that have occured throughout history. Remember that we are PEOPLE. We are not flawless. I still make people mad, just like you. I don't always bite my tongue. & all of that is absolutely okay. Trust me – I'm not strong. You can start fresh by saying "you don't have to be strong, you just need to know that I can care." You can start fresh by not saying "oh no!! You're so strong, trust me!" You can start fresh by saying nothing at all.

I will continue to uplift & support women & girls who are chronically ill. I have spoken to so many wonderful people with illnesses. I've also spoken to mean people with illnesses. Just because you're sick doesn't mean you're an angel. For some reason, people still seem to think this – & it's just not true.

I find relatability by making friends with chronically ill young people. But I am not automatically your friend if I'm chronically ill & you are too. That would negate my whole point: I am a complex human being!  I've done mean things & embarrassing things. I'm a person. I have no problem talking to people who aren't chronically ill; just because someone's chronically ill doesn't automatically make me their friend…& that's normal. In fact, it's humanizing disabled people. It's making us more than bodies examined by doctors, nurses, or curious physician'a assistants.

So, next time you see me – or any other chronically ill person- talking about not feeling so good, say "I'm sorry." "I'm thinking of you." When I or another chronically ill person have something to say about ableism; have something to say about our treatments; have something to say about our life…listen. Just listen, open your ears. Provide love & support. Be a reminder that they don't always have to be stone-faced.

Being chronically ill is a huge burden. It never fails to make those who are chronically ill feel guilty, weighed down – & also feel like they're a burden to others. Calling chronically ill people "strong" is putting more pressure on us. It's making our burdens harder to carry. So: call me hot instead. Call me interesting instead. Ask me a serious question about my illness instead.

&, you know. "I love you" is always great, too.

Love,

Sof ❤

#JulyPlaylist: Some Thoughts. & Tunes, Of Course

Fast, Sof! You don't have time! 

I actually do, but I think it'll be better for all of us if I explain why I chose some of these songs – & then we get to actually listen to them.

I saw Baby Driver. I related to it a lot – soundtrack to my life to cope with experiences. That's why you see a lot of it scattered on here. There are some good, old-fashioned bobs like A$$ – there's also new, like SZA & Kendrick's duo track. Harry Styles' album is all about missed connections; missing & yearning for what one can no longer have. Lorde's latest album & Dua Lipa's latest single are about taking independence – while also revealing their raw emotion. They're two very talented women that are very relatable to me right now. Creep? This is a cover by the Vega Choir. If you watched The Social Network, you'll have heard it. I hadn't listened to it in ages; found it, played it. Keeper! Aminé's album came out only a few days ago – I already loved one song enough to put it on my monthly playlist.

This choice makes sense, though. Wearing yellow, being happy, laughing more, dancing more. Those are things I need to work on. This playlist is about old & new people & things; it's about people I can relate to; it's about just really liking a song; it's as good a description of my month as I can give. Let's get to listening. I'll link something special at the very bottom.

Love,

Sof ❤

  1. bellbottoms - the john spencer blues explosion
  2. harlem shuffle – earl, bob
  3. chinatown – girlpool
  4. new flesh – current joys
  5. water - jack garratt
  6. doves in the wind – sza, kendrick lamar
  7. fetish – selena gomez, gucci mane
  8. new rules – dua lipa
  9. drowning - a boogie wit da hoodie, kodak black
  10. dance (a$$ remix) - big sean, nicki minaj
  11. creep - vega
  12. yellow - aminé, nelly
  13. from the dining table - harry styles
  14. supercut – lorde
  15. debora - t. rex

Here's a video of my month of July, in 55 seconds.

Gender? I Don’t Know A Gender!

Hello there! It's been a while since I've done a diary post. I figured I might as well update all of you!

Since I shaved my head, I've gotten called young man on the sidewalk a few times; I've been asked if I want different pronouns; I've been asked if I'm transitioning; I've been asked "are you a boy now?" or "what are you?"

Most of that was online, by the way. No, I haven't been approached by strangers in real life asking me what my gender identity is; I don't expect to, either! But I thought I might as well address some of the questions I've been getting quite frequently as of late.

Do you want different pronouns?/Do you not want to be called "she/her"?

You can call me whatever the heck you like! It really doesn't make a difference to me. In my mind – & me shaving my head (both this summer & last) helped me figure this out – I'm just Sof, I'm just doing my thing. How I identify can change & that's fine! I spent way too much time & energy agonizing over my sexuality/other identities. So: no, I don't WANT different pronouns. Wanna call me they, he, or she? Go for it! It won't offend me. You can call me pretty, you can call me handsome. In my mind, they both apply to me (sorry). & nothing has changed about me! I'm still the same person! In many ways I identify very strongly as a woman, particularly with issues surrounding reproductive rights. On the other hand, I don't always feel traditionally feminine or "girly" – & that is fine, too. So call me what you like! Doesn't matter.

Are you transitioning? Are you non-binary?

I am NOT transitioning. I am NOT on hormone therapy. I don't plan to do either. Am I non-binary? I'm just Sof. Sorry for all the vapid answers…but it really is how I feel!

Are you a boy now?

Nope!

What are you?

I'm me! I'm Sof. I change frequently – that goes for mood, attraction, appearance, & a whole lot of other things, too. It's something I beat myself up over – a LOT. It's something I've come to realize doesn't matter. Not to me, anyway – some people identify very strongly with a gender or sexuality & that is great & amazing & I support & uplift those who identify that way…it's just that I personally don't!

Also, I don't think this is me "coming out" or anything because I don't have anything to come out about. I'm truly, truly just Sof! I'm trying to make a mark in a few areas & make things better for some people. I like music & animals & taking care of my skin. In the end, it does not matter "what" people think I am. I am just me! I change a lot. & that is okay. If you feel that way, too…that's okay!!!!

This is all a bit up in the air; I think it's kind of hard to explain how I feel because it truly is very vapid for me. I'm better at skin care reviews. But if you want to watch a video of me talking about this, check it out here – & to update the end, yes, I did buy clippers, & yes, I shaved my own head 🙂

Love you all! Be yourselves, & label yourself the way you feel most comfortable – or don't label at all. That's cool, too.

And: Mama, if you're reading this…I'm still your daughter & baby girl. Don't worry!

Love,

Sof ❤

My Tattoos: Why, How, When, Where: Diary

“Never. No, I really don’t think I ever will. It’s just not my thing. Plus, it might affect my performances.”

That’s what I had to say about tattoos for a good long time. A good long time = 17 years. I wasn’t interested in getting one, I didn’t know what I’d get, & yes, I did actually worry about it affecting my career – both as a music student who would perform frequently in sleeveless clothing, & as a professional violinist in the classical music world, where tattoos are, for the most part, taboo.

Not interested, didn’t really care. “I just don’t know what I’d put on my body!” I’d tell everyone who asked if I would ever get one, & to those who would show me theirs. I genuinely wasn’t interested.

Then I got sick. After I got sick, I went on immunosuppressants pretty quickly – about one and a half months after diagnosis, to be more specific. That meant that my immune system was now weaker, & wouldn’t be able to fight off infections, bacteria, viruses, or foreign objects (such as tattoo ink or a piercing) as easily. Immunosuppression shouldn’t be taken lightly; it’s killed people & continues to do so. Before I went on these drugs, my doctors told me to get all my vaccines finished up (vaccines can be dangerous if you’re immunosuppressed, since you are technically being injected with a small dose of the bacteria/virus that is the root cause of whichever disease the vaccine targets), to read some articles on immunosuppression & what precautions I could & should take, & to basically tread carefully wherever I went.

So, I was pissed. I was pissed about my diagnosis, pissed that I now had “rules” to follow – even though I was now almost 18 – & just pissed in general at the world, because now, all of a sudden, tattoos were forbidden fruit. No fruit is sweeter than that of the forbidden.

I started to look up cool tattoos. This was, coincidentally, around the time when Buzzfeed released a few videos of people getting tattooed for the first time, & when “Tumblr tattoos” (small, abstract designs, two or three words, or, yes: That One Picasso Sketch) became the new trend. I was seeing very cool body art for the first time, & now, I “couldn’t” get one.

Then, my mama surprised me with some news: she’d contacted Make-A-Wish, & since I had not yet turned 18, I qualified. I was…pretty overwhelmed. Before this, I didn’t actually know that Make-A-Wish was for any child or teenager with an illness – I just thought it was for children or teenagers with cancer. Not so! Make-A-Wish people came to my house, sat down at my table, & asked “what is your wish?”

Well…it was to meet One Direction, yup. Nope, I’m not ashamed of it anymore! I used to be super embarrassed about telling people that I wished for that. Why should I be? I loved those boys all through high school, & their music kept me cheerful for those two & a half-ish hellish weeks in the hospital in March of 2015. They made me happy. I’m not embarrassed to say so anymore; what’s the shame in loving something that makes you happy? Anyways, I digress! My point: my answer was already on my tongue by the time I was sat at the table.

It took about a month, & I got a call: my meeting with One Direction was arranged for August 29th at one of their concerts, & I’d be able to spend actual time with them. After the initial shock, disbelief, & happiness, I started to think. Harry (my unashamed favorite) was actually a big style inspiration for me – fun fact, he continues to be! Those black jeans with every shirt, pointed-toe cowboy-esque boots, coupled with some seriously lovely tattoos. We all know his vibe. Even if you don’t like Harry Styles, you’ve seen him around town (or your screen) & I know you’ve looked at him & thought he looked stylish & put-together more than once. Don’t deny it!

I really liked Harry’s tattoo style. They were mostly abstract doodles – sure, there was his big (nude) mermaid on the forearm, & that big butterfly on the chest, but although they looked beautiful on him, I wasn’t planning on getting a nude mermaid any time soon. It was those little careless doodles that really appealed to me. That got me thinking: what if I got Harry Styles to draw me a tattoo?

Well, spoiler alert: he did. & he did it beautifully, & when he asked what he should draw, I told him to make the call – so it really is made up by Harry Styles’ mind. I won’t get into more detail, because that’s not the point of this post! But it was a wonderful day, he is a wonderful person, & I left starry-eyed, clutching a small piece of notebook paper on which I had a doodle written in black Sharpie marker.

A few months passed. I went to university. I decided to get my tattoo. I was barred – by my mama. She couldn’t physically stop me, of course – but she freaked me out enough by talking about risks due to my immunosuppression that I let it go. But I didn’t actually let it go: my tattoo stewed in the front of my mind for months, & months.

Maybe everyone hoped I would forget about it? Maybe I’d lose interest? Who knows. But I kept asking my doctor. I kept asking my mama. I kept getting my blood drawn to check my white blood cell count, to see if it was safe.

Many months (& tears) later, I had my mother’s blessing, as well as my doctor’s. I walked into the tattoo parlor, ready to go. About 20 minutes later, I walked out – big smile on my face, & a bandage on my left “side-boob.”

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All ready to go, sitting on the table

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An EXTREMELY gleeful & ecstatic Sof, outside the tattoo parlor, post-tattoo
(I know, you’re probably wondering why I’m not showing the world – I just choose not to, that’s all!) 

So…why was I so insistent about this? Why didn’t I just let it go?

Well, for one, it was a drawing Harry Styles made specifically with my body in mind – I didn’t want the drawing to go in a cupboard…I wanted it on me. Like I mentioned before, fruit is sweeter when it’s forbidden, & the tattoo situation was no exception. &, finally, here’s the biggest reason:

When I was diagnosed, put on medication, subjected to countless procedures, infusions, exams, & doctors, I felt like the control I had over my life was slipping out of my hands. I had scars I didn’t ask for; scars I hated. I felt like I was completely at the mercy of my illness. I felt like I wasn’t really my own person. I desperately seeked for ways to reclaim my own body. This tattoo was one of them. I figured that if I had some scars that I hated on my body, I might as well make some permanent marks on my body that I actually liked.

If you’re wondering if I had any issues with healing: no, I didn’t. Well…that’s not entirely true. A few weeks after I got my tattoo, I was in the hospital overnight for a high fever – however, I’m still unsure whether the tattoo was the cause, as it was many days after I’d been tattooed. Regardless, the skin healed just fine, I had no other issues, & it sits happily on my left side to this day.

So, it sat for a few months, & I was all good & happy. By this time, however, I already knew I wanted more. I didn’t know when, or what, but I knew that I would get more.

Not many months after (about 5) I got another. This one was without the blessing of my doctor or my mother – in fact, it was without their knowlege, as well. This one is one you’ve probably seen if you follow me on social media – I don’t hide it, & am, in fact, very proud of it. You know the one: those two pointy things on my right inner upper arm. Some people thing they’re knives (??) others think they’re claws. They’re actually a pair of cat fangs. I decided on this because we’d lost my childhood cat in January (we had to put him down as he had an uncontrollably large tumor). I figured it would be a good way to pay homage to the cat who’d gotten me through my childhood, solidify my status as a cat lady, & also look very cool – fangs are edgy.

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The man himself: Pimpuś, a Siamese cat with a loving, social personality, beautiful blue eyes, & the loudest meow of all. Seriously. Pimpuś is the name of a cat in a children’s storybook in Poland (name credits to my tata)
So, I saved up some money, called a place a block from my residence at school, & trotted on over one cold evening. I was done, & I was happy. It felt…very good…(sorry, Mama!) to do something so spontaneously.

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Still on the tattoo table, with my just-finished pair of fangs

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The final result
Did I know the risks? Yes. Did anything bad happen to me, like a fever, a skin infection or the link? No. Did my mother get furious at me when she found out abou 3 weeks later? Yes. But it was already there. Do I regret it? No, I do not.

Maybe I would’ve regretted it if something bad had happend…but I still don’t think I would. Call me irresponsible; it’s fine. But I think it’s hard to make people understand the mindset of a sick person without actually being a sick person. Like I mentioned before: sickness = lack of control. Lack of control = frustration, anger, sadness, & the feeling of helplessness. I hate those feelings. I wanted to feel normal for an hour or two. So, yes – I pulled a rebellious teenager & went out to “get inked.”

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About a month ago (via my Instagram), showcasing it loud & proud
My parents were not very happy & actually quite concerned that I’d done this. I get it – from a parental perspective, it’s probably nerve-wracking to have your chronically ill, mentally unstable (at the time) daughter go out & get a tattoo without your knowlege. But…I did it, & it took a long time for me to explain why I did it, but they get it. My mama has literally told me “I understand.” They’re glad I’m okay, they’re glad it went safely & that I was as responsible as I could be for doing something so irresponsible – & that’s the end of it.

So, now for the questions: the usuals are “what do they stand for?” “how many do you have?” & the big one: “how much did they hurt?”

What they stand for: My “Harry” tattoo marks an extremely happy event in my life that occurred after I was diagnosed, when I was still very angry & sad about my illness, still in stages of denial, & convinced that I would never be truly happy again. Meeting One Direction – especially Harry, who’s inspired my style, helped me come to terms with other parts of myself, including my sexuality – was one of the purest days I’ve had. I experienced nothing but raw, unfilitered joy & happiness…something that I didn’t think would be possible after getting diagnosed. Now, whenever I feel bad, I try to look in the mirror or down my side at my tattoo. It really does serve as a reminder that despite all the fear & pain I experience, there have been & will be days that make being alive a hell of a lot of fun. So that’s that. My fangs tattoo is kind of a symbol of me taking control over my own body, a reminder that in the end, I actually do hold the controls – I can stand up to a doctor, I can refuse treatment, I can decide not to take a medication. It’s a reminder that while I have the authority to end my life, I am actually choosing not to. It’s a reminder that I am actually choosing these treatments, even though they’re no fun at all. It’s a reminder that the disease I have was absolutely not my choice – but I can still do things that help me cope with the things I have to put up with.

How many do you have? Do you want more? As of right now, I have two: the two I talked about in this post. Yup, I do want more! & I will get more. Right now, I don’t have the desire or inspiration. But when I do, I will get another one. Maybe even two more. Or three. I don’t know! But I do want more.

How much did they hurt? For me, not at all, honestly. My pain tolerance has been distorted thanks to my illness – I don’t blink at IVs anymore, & I can even inject myself with my own medications – & they both hurt way less than an IV, in my opinion. Remember: everyone’s pain tolerance is different, & different people have different opinions on what hurts more. I was warned that a tattoo on my side would be very painful, & that the upper inner arm wasn’t a picnic, either. But truly – I didn’t have an issue with either of my tattoos. Granted, they’re both small, & granted, I can usually tune out pain pretty well…but still, even if I weren’t ill, I don’t think I’d be bothered. I was nervous for the first one, yes, but once the gun got going, I was completely fine. I’d best describe it as a cat scratch! It hurts a little more in some places, & less in others, but either way, I would never describe it as a painful experience – uncomfortable is what I’d call it. Both of mine were over very soon, too. After my first one, I was a tiny bit nauseous, & needed some sugar. After my second one, I waltzed out the door, ran to my place to grab my violin, & sprinted to an evening dress rehearsal I had for a concert the following evening. I played difficult music under hot lights for two hours with no issue. No big deal – at least not for me!

By the way…to all of the chronically ill people who might be reading this: I understand your craving for the sense of control. I get it, I really do! I would encourage you to be as safe as possible if you do want a tattoo, a piercing, or some other form of body modification, especially if you’re on immunosuppressants. I actually did wait it out for my first one, & I had good blood levels – good enough to be classified as “normal.” For the second one, my white blood cell count was quite low…& I still went ahead & did it. I’m not saying “don’t do it” because I’d understand if you did. I’m just going to go on the record, be a mom, & say: be careful! I do owe you that.

If you’re not chronically ill, I hope you’ve still gotten something out of this post! I hope I answered the constant question (that I also kept asking) of how much a tattoo hurts as clearly as I could. It’s hard to describe; it’s easier to actually feel it yourself. “Cat scratch” is the closest thing I would pin it to.

People always say: “imagine what that’s going to look like on you when you’re old!”

Guess what? Age is going to affect me no matter what. Even if I’m a tattoo virgin, my skin will still wrinkle! I’ll notice my boobs are drooping; see some age spots pop up. I already have some scars on my body that I didn’t ask for. I don’t care how wrinkly my fangs get, & I don’t care what my left side boob looks like at age 75. I really don’t. Those other scars will be there, & they’ll be a reminder of bad, painful things I went through; the tattoos will serve as a reminder of some happy memories or events that I experienced throughout life. That’s what I like to call tattoos: happy scars that I chose to recieve. I like that…& I like my tattoos. No…I love my tattoos!

Love,

Sof ❤

Whoops, I Did It Again! Why I Shaved My Head (Again): Diary

Here we are again. I’m bald! History truly does repeat itself.

“Why’d you do it again?” Okay. Well…I had another post all ready to go about shaving my head & how the experience was & how I did it. I didn’t really plan on doing it again so soon (though I knew I would again sometime in the future).

Here’s some backstory on why I shaved my head in the first place (about a year ago: late June of 2016): I really, really wanted a tattoo. I wanted a tattoo so badly!! (side not: stay tuned for a post about my tattoo experience) Thanks to my medications that suppressed my immune system, however (making it difficult to fight off infections), my doctor & my mother (especially my mother) told me to wait. Tattoos don’t have to come now, I was told. Tattoos could wait.

It’s not like I didn’t understand why it would have been unsafe to get a tattoo at that time – I “got it.” But…I was angry that my illness was making it harder for me to do things that I wanted to do. This is just one of many things that is a constant annoyance for me. Yeah, not being able to get a tattoo at that time was super frustrating & I was very mad & sad about it…but it was also the perfect reminder that my illness was stopping me from doing things that others could go about doing without even blinking. Yes, it was just a tattoo…but it was also symbolizing all the other things I couldn’t do without first checking in with my doctor to make sure it was safe. Mostly, the answers to these questions would be “no” or “not yet.” I was a teenager who lived in the moment…so, I did not want to wait.

I kept griping about the tattoo, kept getting blood draws to check my white blood cell count…but nothing. I continued to be grumpy. I was sad about it. Worst of all, I felt helpless & out of control. Like I mentioned before, my illness so often dictates my behavior. That makes me crave (positive!) control when I’m able to get it.

So, June of last year, I was scrolling through my Instagram discover page & started seeing a lot of models – even high fashion ones! – with shaved heads. It immediately clicked for me: this was something I could do to show myself & others that this was still my body & that I still had some control. Plus…it looked really, really, really cool.

Not long after, I grabbed $15, headed to the closest Supercuts, & told the girl to “take it all off.” I got a lot of adrenaline. I got a bit nervous. But did I have second thoughts? Nope!!! As soon as I felt clippers on my head I felt lighter; more carefree. It was amazing.

A few months later, I checked my blood results & saw that…my counts were high enough to get my tattoo! Of course, I did it ASAP – also something I have no buyer’s remorse over. I started to just let my hair grow (without trimming it or stressing over it) & even got one more tattoo.

In terms of health, I’ve been in quite a bad condition since March – even before. In addition, I was diagnosed with inflammatory arthritis related to my Crohn’s Disease – something that took away my first & foremost dream: to finish a degree in violin performance & go on to be a professional musician.

That dream was yanked from my hands (read my piece about it here if you have further interest!), & I was heartbroken about it. It is probably the largest, most important thing that my illness has taken away from me. I stopped playing in April, once my semester was over, & slowly but surely began to feel lost, unlike myself, unsure of my future, & a whole lot of other things. None of them were good.

A straw broke the camel’s back this past week. I had 3 appointments with 3 different doctors – & I got some very frightening news from one. I was reminded by this doctor that “Crohn’s has taken everything from you” (no shit!) & that she, the doctor, would make it better if I would listen to the frightening & overwhelming advice she hit me with.

I cried all the way home; I got into a screaming match with my mother. I was in quite a state. I felt like yet again, I’d had my own life & body yanked from my hands…by both my illness & by the way my doctor presented me with options. I felt empty again. I felt sad. I felt scared. Sounds familiar.

So, once more, I grabbed $15, went to my local Supercuts, & shaved my almost-bob-length hair down to a 2”. It was like I could feel stress, worry, & sadness melting away from me – dropping to the ground like my strands of hair. I left feeling worlds better. Did I forget the stress of the previous days? Of course not. I did, however, feel less stressed about the previous days.

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A post-buzz (this time around) selfie immediately after – so, right on the curb outside Supercuts

Again – it was like I was telling the world: “Hey!!!! This is me! This is my body, my hair, & my illness. I can do what I like.”

That seems unrealistic, but honestly, it’s true. I could stop taking medications tomorrow. I could get a tattoo whenever I wanted. I could eat the foods that aren’t healthy for my digestion. I could do all of that. I might become more ill because of that behavior, but I could do it if I wanted to.

Knowing that, & rubbing my hand over my velvety-soft head, I started to feel calmer. I could think with clarity. I started approaching my situation with a more objective, rational mindset. All in all, the feeling of control I got from buzzing my head reminded me that, no matter what, I hold the reins.

That’s some pretty heavy stuff! However, shaving my head isn’t entirely because of my health situation. Although I did it because I felt frustrated by the lack of control I possessed, once I shaved my head, I also started to enjoy how it made me feel, how it encouraged me to stop stressing over the way I choose to label myself (I just say I’m LGBT!), & how it allowed me to play around with makeup & clothing in new, experimental ways. It changed my style, & it even changed my demeanor. I loved it. I feel the same way this time around.

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Hospital glamming it up in a surgeon’s office. No hair, lots of confidence

So: I’ll always feel helpless in some situations, thanks to my illness…but I’ll also always have the option to express my frustration, my anger, my sadness, my joy – any emotion! – with my hair. Because it’s hair. It doesn’t hurt or help me. It’s just hair.

You might ask if people judged me, called me ugly, or something along those lines. The answer? I was asked a couple times: “did you do a Britney?”

…Maybe? Britney Spears shaved her head when she was in a bad mental place. I would guess she craved control, too. I don’t really have the answer to that – but I can say that both times that I’ve shaved my head, I, too, was in a stressful mental (& physical) situation. I did it to release, & I have had no regret over how my release turned out.

My family was a little confused, but they came to understand. I got some rude anons in my inbox (who doesn’t), I got some double takes from people I passed on the street, & I was called “sir” a few times. None of that bothered me. I felt free, I felt like myself – & I had some control.

It’s just hair, & it also is more than hair. My hair, or lack thereof, is a reminder that ultimately, this is my body, my choice. I call the shots. Whether the result of the shots I call are harmful is my business, & no one else’s.

I have a lot of decisions to make in the next few weeks (even days). Right now, though, I’m living in the moment, content with the fact that I could go out & do something dramatic, expressive, & liberating without having to worry about how my body would react to it.

Bald Sof is Sof at her most vulnerable, most emotional, most confident. “But you looked so pretty with all that hair!” Guess what: I did! I also look very pretty without “all that hair.” Hair isn’t what defines my beauty – it’s how I express myself, how I behave towards others, how I can lift up & support my friends & family, & so much more. Buzzing my head makes me feel most like myself. It even makes me feel like no matter what, I will always have my body, my emotions, & my mind. If it takes me being bald (& beautiful!) to feel this way…I’ll do it until the day I die.

Oh! & I made a YouTube video about this topic that sort of goes with this post – it also talks about why I shaved my head, & how it makes me feel. Perfect for all you lovely people who like to snack while watching YouTube & going 1000 feet deep at 3 a.m. You know. Check it out here!

Sof ❤

 

It’s Lonely in Here…& That’s Okay 

Hello! Here I am, hitting you with another personal post.

Some of you might ask: “Why don’t you take these issues to your friends?

My point exactly. being chronically ill is a lot of things. It’s different for each person. But one thing goes across the board: it’s lonely. Being chronically ill is lonely. 

Why? Well, because you feel like no one understands you. That’s true. No one will ever completely understand your pain, your struggles, your experiences. That’s something only you can carry with you. That sucks.

Being chronically ill makes you guarded. You’re wary of doctors, of visitors that come with smiles & flowers when you’re in the hospital – but not present when you’re at home. You’re wary of friends who’ve said too much, or said nothing at all when you needed them most. You’re wary of your own family. You wonder if you’re an inconvenience to them; whether your being too ill for that one birthday dinner harbored some resentment. Some of this is untrue, & you know it – but there’s some part of your mind that is always fearful of what might be the real truth. 

Because you’re guarded, you lash out. Or you draw inwards. You sit on your bed for hours…sometimes because you’re too tired or in too much pain to get up; sometimes because you’re afraid that if you go anywhere you’ll face rejection.

I know that being sick is lonely. & unfortunately, I have this for the rest of my life…so, I’ve learned, for the most part, to embrace my solitude; to even find some joy in it. I enjoy spending time by myself & with myself – but when I forget that I cannot lean on others, that I am sometimes too much for others…I get hurt again. And again.

This has happened several times now. I’m getting better. I know I am! & I can’t always be the perfect judge of a person or a situation. Chronically ill people gravitate towards other chronically ill people; it’s because we share experiences & jokes & sorrows. This is great & also terrible. Sometimes those people are not capable of being there for you. It’s something you need to be aware of. I try to be…but that still doesn’t make it hurt less when I’m “forgotten.”

To those who cry at 3 a.m. over pain – whether it’s physical or emotional – it’s okay to cry. It’s okay to be sad about your loneliness; it’s okay to feel angry about a situation, a relationship, or a friendship that did not work out.

Be gentle with yourself. Try to be gentle with the other person/people. Be gentle to your body (You can yell at your doctor, though). Understand that others are fighting their own battles. It’s not an excuse for their behavior, but it makes you more empathetic; gives you context; lets you let go. & once it’s all over & done with, it feels good to let go. Write it out, talk it out, cry it out, paint it out, stare at your ceiling for hours on end. It’s okay. Those are all ways of coping with rejection, loneliness, & unkindness without hurting yourself. Do them. They might even feel good. Some of the best things I’ve ever created/some of the best concerts I’ve ever performed were in situations of extreme emotional or physical pain/stress. I work well when I’m in pain – it gives me something to distract myself with – so that’s when I am busiest. You might feel differently. It’s still okay to stare at the ceiling, you know. I’ve done that too. It’s okay.

It will feel good to be alone. I love being alone. I love spending time with myself, with my animals, going for walks at all hours of the day or night (if I am able). I love crying and dancing to music in the shower, on my bed, on my floor.

That’s what I’ll be doing tonight. The new Lorde album was made for this, did you know? It’s made for the lonely ones. It’s good to be alone. Love your silence, love your solitude. Forgive the people & things that have hurt you – including your own body.

Remember that you’ll always have yourself. I am me. I am no one else’s. I look like me, I am me, & I will always be me. The same goes for you. I promise. I’m here. You’re here. We’re all here. We are taking up space. & we are doing it all by ourselves, in one world.

(Sorry for all the jumbled thoughts – this is a diary, after all, & I’m trying to put all my thoughts here so you can get in my head for just a brief moment. This was written when I was sad, & lonely, & tired. But I will remind myself that being lonely is okay. There’s comfort, & romance, & beauty in being alone. Remember that as I try to remind myself of that.)

Stay lonely, & be loving.

Love,

Sof ❤