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 ❤

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 ❤

 

Why I Stopped: Diary

Some of you may already know this about me; some of you may have no idea! But I’ve gotten a lot of requests lately to post about my favorite classical music, composers, pieces, genres, etc.

I’ve politely declined all of these requests, & there’s a simple reason for that. Why? It’s because, when I was at a birthday dinner for my sister in late April, Mozart came on in the restaurant. I started shaking. I went inside myself. I didn’t want to talk, interact with anyone, or be there anymore.

It’s because, when I was in the car on my birthday, driving home from a doctor’s appointment, the Bruch Violin Concerto came on shuffle on my mama’s phone. I started crying, hunching over in the front seat, my body heaving with sobs.

It’s because when I look at any photographs of myself holding a violin, playing the violin, or, God forbid, see a video of myself playing the violin, I cannot contain my sadness. I cannot contain my grief. It feels, every single time, like my heart is being ripped out of my chest.

Why?

Because I “quit” violin this spring. Not actually quit – I’ll still have to play, take lessons at my university, & I will be continuing as a music major (under a different category with several other cognates) – but I had to give up on my dream of being a performing violinist.

Here’s some back story. When I was 4, my parents gave me a violin, & I started lessons with the Suzuki method. My parents are not musicians, but they are lovers of classical music, & they took me & my siblings to the symphony from a very early age. One of the first musical memories I have is going to a performance of the Four Seasons, led by Itzhak Perlman (even if you’re not knowlegable about classical music, chances are you know his name). I continued going to concerts. I continued lessons. By age 12, I was set on being a professional violinist.

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At age 6 or 7, playing away 

Yes…this seems young to make up your mind about a career, right? Well, with music (dance is similar) early decisions are crucial. When your body is young, your muscle memory is best, you’re at your most flexible, & you’re able to learn quickly & effectively, provided you have a teacher who’s giving you correct technique & support.

So…yes! By age 12 I’d pretty much made up my mind that this was the career path for me. I never doubted myself. I practiced for up to 5 or 6 hours a day (that was when I was preparing for an audition, a concert, or just a tough lesson), I threw completely threw myself into the world of classical music. I went to concerts. I studied various techniques of various famous violinists. I read books about violin prodigies, such as Midori, Itzhak Perlman, & so many others. They fascinated me. Their music fascinated me. Their art fascinated me.

I also had to juggle a high school career with my side hustle of rigorous musical preparation. It was particularly difficult by junior year of high school. I had ACTs, college applications were looming – but most importantly, I had my music school auditions the next year – & I needed to be absolutely perfect. I needed a scholarship, I needed a good school, a good teacher, & support. I probably slept 3 hours a night. I fueled on caffeine & adrenaline. I’d listen to recordings of “my” concerto (the one I’d play for my auditions) at 1 am & at 1 pm. I’d record myself. I’d listen to my own recordings obessively. I’d fix my mistakes. When I couldn’t, I’d kick a wall. I yelled a lot at my own hands. But they always ended up doing the right thing.

In the second semester of my senior year of high school, I was jetting all over the country to various auditions for various music schools. I got accepted at quite a few with financial aid – for several, I got a full scholarship (I ended up at a school that offered me a full scholarship). I was relieved, I was happy, I was elated that it was over. I had given up 14 years of my life for 4 seven-minute auditions. & I nailed more than one.

I came back home, hopeful & happy, & ready to sleep. I went to a party about a week later with my mama. There were a lot of musicians there. There was music being played, cake being served. I remember I was wearing a black t-shirt dress, some high heel leather boots, & black lace tights (it was cold outside). I remember a lady coming up to me & telling me how beautiful my figure was. I remember feeling a throbbing pain in my abdomen. I ignored it. That’d been going on for years. It was just part of my norm…right?

Two days later, I was writhing on my bed, screaming in pain, asking for help, unable to function. I never knew what a 10 on the pain scale was until that moment. I was taken to the ER. No one knew what was wrong with me, except that I had a high fever, extreme pain, & some sort of infection. I was put on some morphine injections & hardcore antibiotics – antibiotics that burned my veins, made my mouth taste like metal, made me throw up when I had nothing to throw up. I was in there for about two & a half weeks. I was a zombie. I remember getting calls from my violin professor, telling me that I had recieved a full scholarship for my school of choice. I remember crying, & turning my face into the pillow. How could I be happy? I had no idea what was going on.

I was diagnosed with severe Crohn’s Disease in May of 2015. I got the phone call from my doctor on the morning of my prom. I went anyway; I don’t remember a lot of it. I was trying to be normal…what was normal??? Who was I anymore??? I tried to laugh it off when people asked me what had happened; why I hadn’t come back to school; why I’d gotten a home tutor to get my grades in order for graduation.

A few weeks later, I graduated high school. I still couldn’t really walk from pain, but regardless, I limped onto the stage to accept my diploma. I attended my university orientation in a wheelchair. I got through the summer, but there was pain – both emotional & physical. There was anger. There was sadness. I had no idea what was happening to my body, & why I was the Chosen One. However…I was determined. I knew that I had my dream, & I knew that I could do it. I picked myself up off the floor, & prepared to move into my freshman dorm.

Freshman year was difficult. I had pain, I had nausea, I had weekly trips to the hospital for iron transfusions & various biologic medications. I was put on chemo pills. I went to my morning classes, but I left often. I joked & said I was always thirsty. Instead, I was quietly being sick in the toilet bowl of the school’s basement bathrooms. But I always walked back to class. I always went to lessons. I performed more than once. & I played my heart out. My passion never left. I put my pain into my playing, & it was more emotional & raw than ever before.

I got through freshman year. I ended up with a 3.6 GPA, despite the hospital visits, the surgical procedures, the absences, the pain, the nausea, the blood, the crying on my bathroom floor at 2 am because nothing was working, no medications were helping, what the fuck was I going to do????

I ended my freshman year. I picked up my things & went to the Mayo Clinic with my mama. We hoped to find some new treatment that would get me out of my flare. We seemd to find something that did the trick. I was “better” last summer – I wasn’t cured, but my inflammation was less severe, my pain less frequent, my weight was “normal” (normal means something different to those with chronic illness than to those without one). I did a lot of interesting things. I shaved my head!  I went to Aspen & Breckenridge in Colorado. I’ve never felt so free – but at the same time, I was still going through pain. I started feeling depressed. Something was wrong. I didn’t know what, exactly – but something was off.

I started sophomore year with high hopes. I was in a better living situation, I was excited to begin new repertoire, I was ready to perform; to put my all into my music, to pour my heart & soul out to the audience until it was right at their feet, just waiting to be picked up.

And….some of that happened. Everything seemed “pretty okay” for the most part. I was having a lot of issues with mental illness – with depression, anxiety, even suicidal ideation. This is commonly correlated to a chronic physical illness. & it sucks. Yet, still – I kept up my grades, I kept working, I kept practicing. I knew I could do it.

Slowly, I noticed my weight was starting to go down. I don’t like to talk about numbers on a scale because I get a lot of comments about how my body is “goals” – & it is not. It is unhealthy, & I cannot do a lot of things because of the low energy, fatigue, pain, & high heart rate that goes with being underweight. But over the course of 4 months, I lost about 20 pounds. I was a walking, breathing skeleton. I don’t know how I kept going, but I did. I truly have no idea how I found the energy to play concerts that contained hour-long symphonies, rehearse a sonata with my pianist for at least half an hour, & also try to go out on the weekends (that ended pretty quickly).

Finally, the final straw made its appearance, & it broke the camel’s back. Since Christmas time (December 2016) I’d been having some “weird” hand issues, as well as some knee & foot issues. I charted this up to my low weight – there’s a lot of achiness & bone pain that comes with being underweight – but as time progressed, I noticed that my hands (& my feet) were not just painful – they were swollen. My knuckles looked knobbly. The tips of my fingers were blue, because my circulation was cut off. Within a few days of noticing this, I was in a full-out flare. I couldn’t open a door, tie my shoes, eat a meal with a fork (or a spoon) – & I definitely couldn’t walk to classes. &, obviously, I could not play the violin.

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My hand one day….
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…& then the following day…inflammation would get worse within 24 hours (if not less)

I visited a rheumatologist (a joint doctor) to see what was up. I already had an inkling, but in a few moments, she confirmed my suspicions.

Inflammatory arthritis in relation to Crohn’s Disease.

What’s that mean? Well, essentially, my Crohn’s Disease was not (& still is not) under control. In fact, ever since I was first hospitalized in March of 2015, I have been in a “flare” (that takes too long for me to explain – if you don’t know what it is, google it! There’s some very good articles that explain it very clearly & concisely). Because I’d been in a flare for so long, the inflammation in my digestive tract (where Crohn’s Disease originates) had slowly started to spread to other parts of my body – namely, my hands, my knees, & my feet.

I was put on a set of prednisone (steroids) & also given injections of cortisone in the actual knuckles of my hands (yup, it’s as painful as you might guess). The prednisone worked for a hot minute. But I knew it wasn’t a long-term solution…& my doctor knew that as well. As soon as I heard the words “inflammatory arthritis in the hands” I knew the game was up.

I went home, & I just sat on my bed for hours. I thought about the years I’d spent on the thing I loved the most. I thought of the time, the money, the love my parents had given & spent to make my dreams reality. I thought of my own time, my own tears, my own happiness, the performances I can never & will never forget, the joy of being told “you’re something special. You give something to the audience that not many people can do.” I sat quietly. I took my violin out of its case, & I cradled it in my lap. & then, I called my mama, I asked her to come up to school, & come visit my professor with me.

I told him the game was up. It was over. The diagnosis I got was a confirmation that I could not continue playing at the level that I wanted to. I’d spent hours crying, screaming, hitting my hands because they did not do what I wanted them to do. What had been so easy just a few months ago was now nearly impossible without experiencing excruciating pain. I couldn’t continue like this. I’d injure myself further, & I could not listen to myself deteriorating in performance quality.

He listened, & he understood. He asked me what he could do to help. I said that if I could have one more performance, before it was impossible for me to perform at the level I wished to perform, that would be the wish I’d like granted. He said “of course.” We set a date. & I prepared to the best of my ability.

I decided to play the Franck Violin Sonata (1st & 2nd movements). For those of you who might not know a lot about classical music, Franck wrote this sonata for his beloved friend & virtuoso violinist/renowned pedagogue Eugene Ysaÿe as a wedding gift. The piece was presented to Ysaÿe by Franck on the morning of his wedding. Ysaÿe learned the piece within a few hours & performed it at his wedding reception.

Although a wedding is a joyful occasion (hopefully) Franck’s sonata is somewhat controversial in that it is not always a “happy” piece – in fact, there is a whole movement that is nothing but intense, emotional turbulence. Not exactly a wedding march. The first movement has a gentle and sweetly reflective rocking theme & is the thematic core of the entire work. The second movement, my favorite movement of the sonata’s four movements, is turbulent, emotional, & extraordinarily difficult to play. It’s made me laugh; it’s made me cry. I love this piece with my whole being. I’ve performed it several times, & for whatever reason, it speaks to me. I wanted my “final performance” to be of a piece that held emotional significance for me. 

& so, I prepared, I prepared, I cried because my hands weren’t really doing what I wanted them to do – but when the day came, I was ready.

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No real smiles the day of this performance 

And so, I did what I had to do, & it hurt more than any other performance I’d had to play – both physicallt & mentally. My hands were already not cooperating with me. I had to make amends for what I couldn’t do. Still, I think it’s the best I ever performed.

That’s ironic, because I no longer will be able to express myself in the complex, emotional way that I was able when violin was part of my daily routine. But I had more to share & to give to my audience than ever before. That’s why it’s the best I played. Yes, I slipped up…yes, there were things my hands just wouldn’t do anymore. But emotionally, it was probably the best-rounded performance I’d ever given.

That’s a damn shame. Even as I type this, I’m looking down at my hands. People continue to tell me not to give up, to keep on trying to “do it!” Guess what: I can’t.

I wish with all my heart that this was not true. My hands simply can’t do it anymore. That’s one of the hardest things I’ve had to come to term with, and it’s unfair. It’s unfair that I have to deal with my body aging when I’m just 20 years old. It’s unfair that I had to give up on something that I love most because of an illness I did not ask for.

I don’t like to think of what ifs, because they’re unrealistic. I can’t help but wonder about what might’ve happened if I hadn’t been sick – if I hadn’t been hiding symptoms & pain for years, if I hadn’t brushed away the things I should’ve ran to my doctor or my parents for – would I still be playing? Would my disease be under control?

I don’t know. Maybe. The possibility that it would breaks my heart, & brings me guilt – so I try not to dwell on it too much. That doesn’t stop the violin from popping up in my dreams, though – more often than not, I’ll be sitting in a concert hall, listening to a faceless performer play something I’d always wanted to play, & now never will. I’ll wake up crying.

“What’re you going to do now?” is a common question among those who’ve accepted that I’m “moving on.” Truly? Truly…I have no fucking idea. I’ve learned a lot about myself these last few months. I’ve learned that I have more capabilities; I’ve learned that the 4-6 hours a day I would spend on my instrument can no longer apply to it – but the dedication, ambition, determination, creativity, & refusal to give up have stayed with me. For that, I am infinitely grateful. Because of the years I spent throwing myself into my music & my violin, I know that I will be able to keep going. I will even be able to keep ahead. These last two years, especially, have proven that.

I do not give up. I do not look at my choice to stop violin as giving up (usually…sometimes I’ll feel super bad about it & think of it as such). It was a choice I made for my health, for my dignity, & for the sake of my own sanity. There is nothing more frustrating than discovering your fingers & hands have slowly started to betray you…at the ripe age of 19-&-a-half.

Will I ever truly get over my choice to stop? No. I don’t believe I will. Will I always cry when I hear a certain piece, or be unable to talk to those around me if a classical piece starts playing in public? No, probably not. I think that I will be able to attend concerts in the future; I might even enjoy them. There will always be that twist of the knife – but music is now part of my blood. Just because I’m not going to be a violinist doesn’t mean I can’t stop music from affecting me in both emotional & physical ways. Even if I tried, I couldn’t stop that from happening.

& so, I’m continuing on, continuing school, continuing life. My violin case sits under my bed. I’m staring at it right now. It looks lonely. It feels lonely, to think of my violin sitting in there. It feels even lonlier when I think of the fact that the violin will no longer be an emotional outlet for me; that its therapeutic qualities – for me, at least – have trickled to a halt.

It feels torturous when I think about the dreams I’ve had, the dreams I continue to have, about playing something, or playing somewhere, or worst of all: being unable to play, locked in a room with a performer, having to listen to them play something I wish I could.

But this will not come to an end overnight. It won’t come to an end in 6 months. The violin has been the focal point of my life for over half my life. Something like this doesn’t just stop when you want it to. It’s in my mind, my bones, my blood. I hold my makeup brushes “weirdly” – & always have – because of holding a violin bow. When I throw my arms up in the air, my left arm crooks into that special position. When I hear a certain pitch, I’ll think of a note – think of a piece that starts with a note. I can’t erase these things from my mind or my body.

I don’t think I want to. It hurts every time something like this happens – it hurts because it’s a reminder of what I had to leave behind. But studying music was (& is) so amazing. No…I can’t “do” what I did before. But, although these little behaviors that I’ve picked up over the years with no thought are sometimes painful, they’re painful in a sweet way. They’re a reminder that this will always be with me. I was worried that I wouldn’t be thought of as a musician once I stopped telling people I was studying violin – because it is a crucial part of my identity.

I realized I didn’t have to tell people. It doesn’t matter what other people think. I know how many years (& tears) I spent on my music. I know how deeply it affected me. I know that it has changed me, shaped me, even – from a very early age. I will never be able to get rid of something so deeply engrained in me.

Right now, that hurts. But in a few years, I think it’ll be good. I will never not have this with me. It’s impossible to let go. For that, I’m grateful.

Now, if you’ll excuse me, I think I’m going to go cry for a bit. In a good way. In a healthy way. Because it’s okay for me to be upset about this. It’s even okay to be heartbroken. I’ve lost a huge part of myself, & there is no shame in shedding tears over this part of me that is now more shadow than solid…to the outsider, at least. In my mind, music – & violin – is raw, real, & very much with me; it is up close & intimate. & again…for that, I am, & always will be grateful.

Love,

Sof ❤

I Got A Therapy Cat – What’s She DO, Though?

I got a cat!

I got a cat I got a cat I got a cat I got a cat I got a cat I got a cat I got a cat I got a cat I got a cat I got a cat .

In case you don’t follow me on social media, here’s some news: I got a cat! If you do follow me on social media, you’ve seen her already. Probably more than you’ve wanted, but that’s okay. I don’t care. Her beauty must be broadcasted.

Some of you might actually not know this, but I’ve had a cat for the majority of my childhood. He was a Siamese cat, a Christmas present for all three of us when I was only about 6 years old. He lived a long, full, happy life in our household, until the beginning of this year, when old age caught up with him.

Needless to say, I was sad – but I missed having a cat’s presence in general. I’ve always been a cat person (though I love my family’s French bulldog) & truly missed having one to nap with, play with, & just sit on my bed with.

We’d been talking about me getting, yes – a “therapy cat” for a while now, even before my senior cat died. Why?

Well, I remember coming home from my first long-term hospitalization, hardly able to move, & seeing my cat already waiting for me on my bed. He slept there with me day in, day out, & came to check on me at night, too. He was a constant companion on the days that I felt bad. He always seemed to know when I was feeling especially, ill, & when I needed some quiet company.

When I went to university, this (obviously) changed. I was in a dorm, & couldn’t bring my family’s cat even if I were allowed – but I missed him dearly. I had a single dorm room for both my freshman & sophomore years of university due to health issues (immunosuppression) & it got lonely sometimes. So, finally, when I started making apartment plans for this upcoming school year, the subject of a therapy cat kept coming up. And – rather unexpectedly – here she is. Mačka (Croatian for “cat”), about 6 years old, a rescue cat, a single mother (all her children have been adopted) with a spunky yet cuddly personality…& beautiful green eyes.

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Mačka with one of her friends (enemies?) the other day 
So – why is it a great thing for me, a sick person, to have a cat? (therapy or otherwise)

  1. Company. Sick people get lonely! Sometimes it’s because of self-isolation; other times it’s simply because we’re too sick to make plans or even have someone over to visit. A cat is always there; a cat is a presence that you can rely on, but never have to entertain. They’re perfectly happy sitting in silence, cuddling, or playing with a toy – but whatever you decide to do with a cat is on your own time. Even as I’m typing this, my cat is stretched out right next to me. There’s something very comforting about having another presence in a room/apartment/house with you, even if that presence is an animal. Sometimes….especially if that presence is an animal. Cats can’t say anything, which means they can’t say anything wrong. They do no harm, only good
  2. No walks! Personally, I wouldn’t have the energy after long days of class to walk a dog. It would be irresponsible for me to have one because of it! Cats are self-functioning, happy on their own, & happy when you’re with them.
  3. Gives me something to look after. Oftentimes, being ill makes one feel like a burden to others; makes one feel like they have nothing to contribute. I’ve been there many times – I’m sure I’ll be there again. But having my cat depend on me to feed her, spend time with her, change her litterbox, give her fresh water, etc., gives me a sense of purpose & responsibility. It makes me feel like I’m giving happiness (however small) to someone else, no matter what. Who cares if it’s a cat I’m giving happiness to – she deserves it!
  4. A source of positivity & joy. I truly have laughed & talked more since I got Mačka; I’ll even go so far as to say I’m happier. I’m not saying a cat can cure my depression – but she can be a welcome source of positive distraction; a great way to laugh off my frustration insead of cry it out. And when she sees me & is clearly pleased by seeing me, it’s an ego boost, believe it or not. No matter who I’m mad at or what I’m sad about on a particular day, I know that I’ll have a cat to go home to who will be happy to see me.

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Whether you’re mentally or physically ill or disabled, I think an animal is a wonderful thing to have in your life. They’ll give you some responsibilities, but also provide you with laughter, happiness, & play time. Even in my young adult life, I know I can use a good dose of that – & you probably can, too.

Love,

Sof ❤

I’m that person…you can follow Mačka on Instagram here.

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 ❤

It Feels Good To Dance It Off: Diary

Mental health has been a pretty big concern ever since (& even before) I was diagnosed with my physical illnesses. Before I was diagnosed, I was hiding a lot of pain, trying to mask behaviors that were “weird” or “abnormal” & in general trying to be smaller, more compliant, telling myself that this was nothing.

When I was finally diagnosed, that in itself was a process. Going through stages of grief after a diagnosis of a serious chronic or terminal illness is normal – painful, but normal. Still, to this day, I have issues with my mental health: things that I repressed (& regret doing so) things that come up in unsavory dreams, & the constant stress of simply existing as a sick young woman.

I have depression! I have anxiety! I am the first to acknowlege this. Just like a physical illnesses, these mental conditions don’t define me…but they hang over me like a dark cloud. It’s one more heavy burden to bear, & sometimes it can just be too much to handle. I collapse under pressure. Crying, screaming, lashing out at those who care about me – I’m guilty of all of those things, & am the first to say that my being ill doesn’t excuse that behavior.

A few weeks ago, I was feeling really bad – anxious about the test results I’d just recieved, wondering about possible future careers, etc., etc. It wasn’t healthy, because I started retreating into myself again. I even stopped talking to “Internet friends” for a few days. I wanted to be alone. I wanted my family to leave me alone. I didn’t feel like engaging with anyone – at all.

While alone time is necessary & actually very healthy, self-isolation, particularly when someone’s going through a tough time, is really, REALLY unhealthy. For me, the end result is usually being in bed, blinds shut, crying by myself, or treating others unfairly when they ask what they can do to help.

Being an introvert? Cool! Self-isolation? Not cool, & definitely not the same thing.

I feel like some people might say: “Just try to spend time with friends more!” This is the ideal situation, yes! I wish I could hang out with friends more. However, when you’re chronically ill, “hanging out” can be draining…even if you’re just sitting at someone else’s house, on the couch with a box of pizza.

So – for the most part, hanging out is a no for me. It’s just too tiring. That sucks, & it makes me more angry, bitter, & closed off to the world, to my friends, & to my family.

So, what can I (& you, if you’re struggling with this as well) do to fix it – or, if not fix it, at least make day-to-day life more pleasant?

I started dancing & singing it out.

Am I a good singer? Nope. Dancer? Absolutely not. That’s what makes it so helpful for me. I know I’m not good at these things! I’m not striving for perfection, I’m looking for a healthy way to let out my stress. Dancing & singing badly is just plain goofy! It looks silly, & it makes me laugh.

It was when I was on Twitter a few weeks ago, Spotify on shuffle, that one of my favorite songs came up: “Danke Schoen,” sung by Wayne Newton. If you’re thinking: “is that…?” yes. Yes it is. It’s THE song from Ferris Bueller’s Day Off – you know, the one where he’s on the float lip-syncing.

I immediately started smiling. Ferris Bueller doesn’t have any particular depth or a pancake stack of hidden meanings, but it’s truly a treasure. It’s a happy movie, packed with humor, adventures gone wrong (in the best way possible) – &…let’s just take a minute for Sloane’s fashion.

Anyways…Ferris is a super happy guy. He laughs a lot, he’s laid-back, he doesn’t think forwards; he lives in the moment.

Unfortunately, I’m not Ferris, but I want to be. When I say that…I mean that I want to smile more, laugh more, be more relaxed about the future no matter what lies ahead.

I decided to just prop my phone up on my laptop & go to town. I know all the words.

This was something I did on a whim. It was late, I was bored, stressed, & after hearing this song, felt a bit nostaglic!! So…I bopped it out.

There’s something about knowing lyrics to songs you love; songs you only associate positive things with. “Danke Schoen” makes me smile. It makes me feel happier, more relaxed, &, quite frankly, full of joy.

I just posted it to my Twitter without really thinking much of it. The next day, though, when I actually watched it myself,  I realize how unfiltered my happiness was in those vidoes

So, of course, the following day, I did it again. This time? One Direction’s “Best Song Ever.”

I know! Some of you may be rolling your eyes. That’s OKAY! These are cheesy songs. The cheesier, the better. It allows me to be weird, allows me to feel more like myself; allows me to have 3-4 minutes of fun & joy…even on the saddest/most frustrating/most painful of days.

After going a little ways to my hospital (& having to spend the night in a hotel since I had to be in hospital at 6 am) I came out of my appointments & tests, scared, sad, & confused yet again.

My mama went back to the hotel to rest since it was still so early. I couldn’t sleep; I was too anxious & restless.

So, I took it to the streets. I filmed cheerful moments of my day. Now, instead of thinking of May as a stressful time filled with tests, pain, & anxiety, I’ll look at this & remember that the small treasures I encounter every single day are important to focus on.

It is okay to be different, to be weird, to not fit in. I’m used to not fitting in, but most of these “fitting in” situtations are becaues of my physical condition.

To truly let go, to truly just be myself – for a minute, two minutes, or twenty – is so liberating. Who cares if I look weird! If 5 minutes of bad dancing & lip syncing helps me out, I’ll take a daily dose of it.

Of course I’ll still have bad times. I might even have bad times two minutes after making something like that. But that’s not the point. I’m trying to prove to myself that I can..I can…experience joy, happines, & contentment, even in my darkest moments, even when I’m in a lot of pain.

I’m going to keep at this. For me, listening & dancing to songs that I associate with positive memories is truly an ultimate form of self care. Whether I’m in my bed, on the sidewalk, or laying down on my green lawn, this kind of behavior always cheers me up – & that’s important when you have a life overflowing with stress.

My name’s Sof. I’m a bad dancer. I don’t care! It helps me escape a frightening world, if only for a little while.

There’s lots of coping mechanisms out there. Some are really unhealthy & unsafe (though I understand why people cope that way – I have been there too), so why not try dancing once & a while.

I know. I KNOW! It sounds super cliche, right? But do me a favor. Just…try dancing! Try singing! Keep dancing! Keep singing! Just try it. You never know – it just might change your perspective (if only in a small way).

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A sarcastic pose that turned into smiles & laughs
Love,

Sof ❤

P.S. What are your favorite songs to lip sync/dance to? What do you like to do to cope/push negativity out of your body? I would love to know. Much lov!!