~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.
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!)
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!
"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!"
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.
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:
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.
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.
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?
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!
We all know that some high-end skin care really isn't all that. At least, I know it…I hope you do. We've all seen beauty gurus doing their "hot or nots" on Youtube, trying out $200 face primers, $100 face masks, & $60 lip balm by La Mer (Jackie Aina says it's not worth the money; I'll trust her).
All that sounds super appealing – I mean, the thought of putting a gold leaf sheet mask on my face just because of the aesthetic concept. But…I know that some of my dirt-cheap, K-Beauty face masks will do more than any gold leaf ever could. I know that oftentimes, I'm just paying for packaging when I buy a higher-end product. However…there are some that are worth the money, just like there are some that are not. I'm going to give two of my top high end skin care products, & two of my top low-end skin care products – & provide reasons as to why they're worth it, or why they're so cheap & still so good. Read on!
I've purchased this only once (in early March) & I am not close to being finished with it – even so, I know I will be buying it again. One of the reasons I'll be buying it again is because I'm still not done with it! A high-end product's longevity is a huge concern for me. Yeah…the full-size Caudalie Beauty Elixer is beautiful & wonderful & I adore how cooling it is on my skin – but I cannot drop $50 on a facial spray, no matter how much I love it (I get the $18 travel size when I want to give my skin a special treat). So, since I only need 2-3 pumps of the Babyfacial – not more than two times a week – I can justify the $80 price tag.
Also: the Babyfacial has drastically improved my skin, & continues to do so. It's a powerful, effective detox – I always have softer, clearer skin after using it, & despite my sensitive skin, I've never gotten a bad reaction to it (like a burn or a rash). Plus, Drunk Elephant's super hygienic packaging (Babyfacial comes in an airtight container that doesn't expose it to the light) is just one more reason for my immunosuppressed skin to love it. I'm not ashamed to say I bought the Babyfacial, & I'm not ashamed when I say I will continue to buy it. This stuff lasts, it's effective, &…yes, it has beautiful, pale-pink packaging.
Eye creams don't really…work on me. I have dark circles constantly – thanks anemia! – which I'm not really bothered about. I think they give dimension & contour to my face & have come to accept, even love them. However, what I do not accept or love about my under-eye area is the puffiness I wake up with in the morning. This is all thanks to late nights – thanks chronic pain! Thanks anxiety! – & even though I tried a couple eye creams before this one, they didn't do anything to help my puffiness. Sure, my skin under my eyes was softer…but that didn't make me look any less sleep-deprived.
Literally the next morning after I used this cream for the first time, I woke up with absolutely zero puffiness. Yes, I was still tired, & grumpy, & wanted to get back in bed – but it didn't look like I felt that way. I was truly shocked. I don't expect most products to work overnight; I understand that sometimes, skin takes a while to get used to/garner full effects of a product…but this one wasted no time. Now, I use the Saturday Skin cream every night, paired with the Milk Makeup Cooling Water Stick (also a great product that I adore – just not truly categorized as "high end") & (eventually) fall asleep, content with the knowlege that no matter how tired I am when I wake up, I sure as hell won't look that way. This will keep being refilled on my top shelf. Thank you x 10 to Saturday Skin for keeping me looking fresh!
Truly ride or die. This isn't just good because it's cheap…it's good because it's good. I have backups of this absolutely everywhere; I use it as a toner, as a light hair fragrance, as a refresher in the middle of the day when I'm feeling parched & dull, & as a setting spray. It's so multipurpose, so effective, works for all skin types – & you can purchase it in the tiniest little 1 oz. bottle (at Ulta's checkout) for your weekend getaway for $5, in the 4 oz. version for $8, or the jumbo 8 oz. bottle for $12. I have it in all three. You'll always catch one in my purse, two on my top shelf (one for a backup, one for use) & probably another tiny one in my bag – just in case. Are you afraid it's going to smell like your grandma's potpourri? Don't be – it's fresh, light, & absolutely not grandma-y. No offense to grandma. Mario has treated me better than any man ever has – & he'll be here with me til the day I die.
You know the Sunday Riley Good Genes Lactic Acid Treatment? The one that costs $105 for 1 oz.? Try this lactic acid, instead. You get 1 oz. for $6.79. No, it's not as good as the Sunday Riley – but it's nearly as good, & is more than 10 times cheaper for the same amount of product. The 5% version made Into The Gloss'sBeauty Editor's May Favorites article – I initially used the 5%, then worked my way up to 10%. I can't say that the 10% is significantly better than the 5% (10% does tingle more & sometimes I wake up with brighter, clearer skin than when I used the 5%, but it's hard to tell whether it's that product or just chance)…but I can say that they both work beautifully as a chemical exfoliant – even on my poor, dry, sensitive skin. Seriously, it's amazing. Just ignore the smell…some call it "maple syrup," some call it "burnt plastic" (I'm team "burnt plastic") & some say, oh so eloquently, "ass but it still works really well so I don't care" (thanks to one of my followers for giving me that priceless description). Regardless of what you think it smells like, this stuff works. Give it a chance; I don't think you'll be let down. In general, try all of The Ordinary's products – you won't break your bank, & you won't be let down. You might even be let up.
There you have it! Two things I'm unashamed to say I love (& why) & two things that, even if a higher-end brand has something similar, I'll politely pass on & continue to use my cheap, effective, good products.
Remember – a high price tag does not mean a product will be life-changing! Oftentimes you might just be paying for a name, for packaging, & just because some pricing markups are ridiculous. Don't feel bad about not getting that $60 La Mer lip balm. I'm happy with my $12 Balm Dotcom.
Get 20% off any Drunk Elephant purchase here, & get $10 off a $50 purchase from Peach and Lily here!
“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.”
(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.
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.
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.”
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!
If you’re still reading this (& the title hasn’t scared you), hello! It’s me. I’m not going anywhere soon (I don’t think, at least), but I think it’s important for me to have this conversation with myself, those I love, &, yes, people like you. Some of you reading this may be chronically ill; you might have a chronically ill child or relative. These things can be scary to talk about, but they don’t have to be. So, without further ado, here’s how I got super comfortable with how I want to die (if I have any say in it) & why it’s healthy for me to talk to myself & to those I love about my death.
Like so many other things that I’ve written on here, this was spawned by a late-night Twitter thread. I don’t get a lot of sleep; some nights I get no sleep – hence these rather morbid trains of thought that eventually get turned into something more coherent.
Even though I’ve been told many times by my doctor(s) & family members that Crohn’s Disease will affect my quality not quantity of life, there’s a large part of me that doesn’t believe them. It’s not melodrama – I promise. Yes! Technically, it’s extremely unlikely that my actual Crohn’s Disease will kill me. However – it is quite possible that I could get some sort of cancer from a medication that I’m now taking.
Why? Well, because medications that have been in the field for a while (when I say a while, I mean 10-15 years) have not worked for me. So…I have to resort to the latest & greatest of medications. On one hand, this could be amazing, yes! On the other hand…these medications have little to no research on a patient’s long-term health – even though they’ve been FDA-approved.
This isn’t me attacking “Big Pharma,” by the way. I get it! New medications need to be put out there, because older ones aren’t helping some patients – patients like me. I get that, & don’t try to fight it. But for me to say that these medications will do nothing but good things for me is, quite simply, unrealistic. There’s quite a high likelihood that some unknown & possibly detrimental side effect will pop up years from now. That’s a shame, but it’s also part of the game. We all know that medicine is a practice. That’s why doctors practice medicine. It’s an ongoing battle & there usually aren’t clear-cut answers or cures.
Okay. So, not only am I on medications that have little to no long-term research statistics, I am also on low-dose chemotherapy. Yes, it’s low-dose…but there’s no expiration date for me stopping my chemo. I could be taking this kind of chemo (or another) for years; perhaps, even, my whole life. The point of my chemo meds is to suppress my immune system just enough so that my body accepts the other meds I take meant to control my Crohn’s Disease (it’s complicated, I know).
So, basically, I have no idea what is going to happen to me in 10-20 years. To say otherwise would be kidding myself! I don’t mean that in a morbid way. It’s just the facts. & for me, personally, it’s more comforting to kind of think this information over…to talk to myself about how I would approach an earlier death. For example: I want a DNR.
What’s a DNR? It’s a do not resuscitate order; it’s a request not to have CPR if your heart stops or if you stop breathing. Unless you have a DNR on file, hospital staff will do everything they can to keep your heart beating or keep you breathing.
This sounds good, right? Like…we want our hearts to keep beating. We want to keep breathing.
Well…not necessarily. I was of the above opinion for a while, too, until I listened to RadioLab’s (a great podcast series, try them out!) episode called “The Bitter End.”
In this episode, according to RadioLab’s summary: “Producer Sean Cole introduces us to Joseph Gallo, a doctor and professor at Johns Hopkins University who discovered something striking about what doctors were not willing to do to save their own lives. As part of the decades-long Johns Hopkins Precursors Study, Gallo found himself asking the study’s aging doctor-subjects questions about death. Their answers, it turns out, don’t sync up with the answers most of us give.”
Basically – because of what doctors have seen in their careers of attempts to resuscitate patients, they donot want this experience for themselves or for their family. In fact – most are so adamant about this that a study was conducted by Johns Hopkins Hospital, called The Precursor Study. All the subjects were doctors, & all were asked about what forms of care they’d choose should they suddenly fall ill, or what they’d choose at an older age.
I don’t always trust doctors (for a variety of reasons due to my chronic illness) but I have to say I believe them on this one. I’ve seen people on ventilators, in palliative care, both in real life & on screen. Neither is a pretty sight. I don’t know what I’d do if it was a relative of mine, but I think if it was me, I’d go for a DNR.
This isn’t an easy topic to think or talk about – especially not when you’re a younger person. But if you’re a younger person with a chronic illness (especially a serious one), it might be worth your while to discuss which treatments you want – & which ones you don’t.
Remember – if you’re over 18, your parents can advise you in treatment…but they cannot choose your treatment for you. You’re a legal adult at 18. That means that you’re the one choosing to walk in for an infusion, you’re the one filling your prescription/signing off on it, you’re the one consenting to a surgery & risks of anesthesia, you’re the one making the decisions about your life because it is your life, plain & simple.
No one really knows what they want with their life, right? It’s constantly evolving & changing. But there are some things I know I’ll never want. I want to tell my parents & ICEs that. I want to make sure that should something terrible happen to me unexpectedly, I’ll get the treatment – or non treatment – that I want & deserve, as a human being, as someone who owns their life.
For me, thinking about & discussing this topic isn’t frightening or overwhelming. It gives me a sense of calm; a sense of control. It reminds me that even in this frightening, overwhelming world where I was given an illness that I didn’t ask for, I have the controls at the end of the day. I hold them in my lap. & I will do everything I can to make my end the best one possible.