​How I Live With Moyamoya Disease: The Then, The Now, and The Next

Living with Moyamoya: From Brain Surgery at 14 to Still Kicking at 29

Back in December 2010, my life got flipped upside down. At 14 years old, while most freshman's were stressing about math tests and crushes, I was handed a diagnosis I couldn’t even begin to understand: Moyamoya disease. It’s this rare brain condition where your arteries basically decide they don’t want to do their job anymore. Like “nah, blood flow? Not today.”

By January 2011, I was on the operating table for an indirect bypass surgery. Yep, my teenage years started with shaved hair, stitches, and a scar that looked way cooler than any Hot Topic accessory I could’ve bought at the mall but did I think so at the time? No, I actually refused to take pictures at the time because I was extremely insecure about myself. Now, I might shave my head just to bear my scar with pride because other people, especially children facing what I did, well they might just need that type of support. I am here for it, but in reality, shaving my head seems pretty extreme, so that probably won't happen. But shoot, who knows what I have in store, anymore. I take everyday one step, one day, one creative outlet, at a time. 

My story is weird, messy, chaotic, but hey it's mine. These are my thoughts. Real, raw, and beautiful. So hey, if you are reading this thanks for stopping by today and joining me on my adventure of explaining these cards in life, I have been dealt and totally embracing it with me. It means a lot. More than you know. 

Lets begin: So I’m 29 years old, and its been 14 years since my surgery and here I am standing, well actually, sitting usually. I made it, somewhere not really sure where yet, but I made it. And now, I am finally facing the world without insecurities (the insecurities are still here but for the purpose of creating my dream and a fulfilling successful life, I am forcing them out by being authentically me and sharing my story for the whole wide world to see). 

However, I still live my life with the long term effects of Moyamoya Disease. So, let me try to explain my life to a bunch of weirdos who are a little too curious about what I have been put up against or maybe it's just me here, and if that's the case... well then this is awkward but I will be my biggest fan, if that is the case. Guaranteed.

Surgery: The Day My Brain Got a Tune-Up

After receiving the diagnosis of Moyamoya, I was pretty terrified because although it was supposed to help with the crazy symptoms I was experiencing at the time, we had to see several doctors and each one made it sound a little more intense. But basically, the doctors explained that the surgery was to help reroute blood to my brain, which sounded both terrifying and oddly impressive. Like, who gets their brain rewired before they even get their driver’s license? And welp, that is lucky ole me, apparently.

I thought surgery would be the end of the story. Plot twist: it was just the start of a whole new season of “My Life is Weird, and Always Will Be.”

What Life Looks Like Now

Here’s the fun little grab bag Moyamoya and surgery left me with:

• Migraines: which sometimes feel like a marching band set up in my skull and other days it is like a whole construction crew is up there just demolishing whatever filing cabinets they want, which might actually be true because I forget a lot of crap. (That is why I started writing in the first place, I pretty much transcribe my whole life on paper, so I never forget the good parts, bad parts or just the important things I need to remember)
• Neuropathy: which comes out at the most inopportune times and I experience numbness, tingling, and the occasional “why is my foot asleep, I wasn’t even sitting funny?” moments. Other times, it shows up as intense, shooting leg pains and leaves me weak and unable to walk for a while. Almost always resulting in, falling or walking with some sort of assistance, or sometimes just standing still in a really weird position, until it subsides. For the most part, if you see me walking fast it is because I am trying to get to point a to point b, without these side effects popping in. Even though, they seem to show up pretty often.
• Vertigo: AKA the room spins like I’m on a roller coaster, except I didn’t buy a ticket and I definitely didn’t ask to ride. (Well technically, this isn't the best analogy because I am not allowed to ride rollercoasters, well it is highly recommended that I don't, even though sometimes I do... but also because technically, the hospital bills would be considered as the ticket, and I did agree to having the surgery.) I think you get the picture, but see how my brain works, the gears are grinding away and it seems to always be working way too hard at overthinking, literally everything. I sometimes think my migraines might be a result of this, as well but there is no actual evidence to support that theory, well not yet anyways. 
• Seizures: uninvited guests that are never welcomed and always really loud. Which is just rude, especially when all you are trying to do is get through another day. Not to mention, that the recovery and recoup time after a grand mal seizure is pretty rough, sometimes it leaves me so weak for days after, and clearly that interrupts with living a normal-ish life. I also cannot drive for 3 months after a seizure is reported, because in the state of Arizona the doctors are mandated to report this to the dmv. So, that is fun and super annoying. Not like I have a car anymore, anyways. I am sure that will be in another blog but for now, I'll leave it alone. 
• Mini-strokes: Something I thought would go away after surgery, which did get better for the most part. Or maybe I just learned to live with my body doing things on its own, without telling me that its happening. For instance, writing with pen and paper and my hand twitches, making my page covered with random pen marks. Or when I am sitting there holding something, and all of a sudden my brain glitches or just goes bezerk and there goes whatever is in my hand, and with my luck, it is almost always food, or a drink that almost always stains my blouse, though over the years I have learned tricks to avoid some of this from happening, like holding my cups with two hands, or bringing the plate up under my chin which is where It will stay the remainder of me eating; but I am not gonna lie, I am a mess and that comes through, most days.
• Fatigue: because apparently, my body’s full-time job is just keeping me upright. With fatigue, one might think, that I would be able to sleep more, but my brain is funny like that. I could be desperately tired but most nights, I have trouble falling and staying asleep. So basically, I run off sleep deprivation, caffeine, or delirium.  

It’s not always fun, but hey, at least I get to say I survived brain surgery. Not everyone has that on their resume and if they do, they are part of what I like to call the Brainy Bloopers, a secret society, I just now made up for those who are cool enough to say they too have identified as The Scarecrow from 'Wizard of Oz'. 

Finding My Healing Space

Here’s the thing: my brain may have taken some hits, but my soul? She’s still shining. This is just one of the many reasons why I started Soulistic. Turning this dream into a reality is actually super important to me and I thank anyone who is here, supporting this dream. Even if you just stopped by, because you were being a little nosey. Thank you.

Painting, writing poetry, creating in any manner really; it’s how I process all the heavy stuff. 

It’s my therapy, my release, and sometimes my comedy routine. (Like when my painting ends up looking nothing like what I planned… I just tell people it’s 'abstract.' or when I do something really good but my nerves prevent me from actually sharing it, which I am getting better at that though and that's a freaking win)

Art has been my way of turning pain into something that speaks hope. Something, that keeps me going. And something that is subjective, so even if y'all don't like it,that's  okay with me. I like it. Some of it. Most of the time. No, I am supposed to be my biggest fan, all of the time. Doesn't always seem to work out that way, but hey, I am here. Being vulnerable, under the eyes of all of you. So, even if it is not all liked, someone will see it and like it and I do like it, even if it doesn't turn out exactly right or how I imagined in my head. And if my art doesn't sell, maybe my brain will on the black market. Haha I kid, I kid. 

Nonetheless, I am still brave. So, cut me some slack, will ya? Talking to my brain, not my audience, but of course I am sure you knew that.

Dark Humor Keeps Me Going

Let’s be real, you can’t live with a condition like this without laughing at it sometimes. If I didn’t laugh, I’d cry, and crying just gives me worse migraines, so laughing it is.

Like, sometimes I joke that my brain got a jump-start at 14 and I’ve just been running on aftermarket parts ever since. Or that my seizures are my body’s way of throwing a surprise party I didn’t RSVP to.

Is it dark humor? Sure. But it’s also survival. And if you’ve ever lived with a chronic condition, you know humor is one of the best medicines, and if laughing doesn't help, a spoonful of sugar is a sure way to do the trick. Of course, it is not always funny in this brain, sometimes I wish I could just tell it to 'shut the f*ck up' and turn it 'right the f*ck off'. It could be worse though, so I choose to wear it proudly and loudly most days, that is if I am not retreated to my bed to maintain my symptoms.  

Living with Limitations, Loving Life Anyway

At 29, I don’t see myself as broken. I see myself as someone who’s still here, still standing, still creating. Some days I crash, some days I soar, and some days I just binge snacks and half-assed sleep and call it balance.

I live with symptoms that will never fully go away, but I am learning how to live a fulfilling life, anyway. One that makes my family proud, and one that makes me proud. That’s what I want other people with Moyamoya or any other debilitating illness or long term disease, diagnoses, or anything else that may be disrupting a 'normal' life to know: your story isn’t over because of your diagnosis. You can still laugh, love, create, and build a life you’re proud of.

Closing Thoughts

If I could go back and tell that 14-year-old girl in the hospital bed anything, I’d say: “Buckle up, buttercup, it’s gonna be a bumpy ride. But keep your head up because you’re tougher than you know. You’ll find a way to laugh at the hard parts, and when you can’t laugh, you’ll turn it into art. You’ve got this, and one day you’ll learn to love every quirky part of yourself that comes with it.”

Moyamoya is just one part of my story, but it’s not the whole story. The whole story is about resilience, faith, dark humor, and turning scars into something beautiful.

So here I am, 29, still fighting, still creating, and still finding reasons to laugh — even when the joke’s on me.

And if you’re reading this while carrying your own battles, know this: you’re not alone, and your story matters too.

✨ Want to support my journey, share your own, or help turn pain into purpose? Subscribe to this blog, drop a comment, or reach out to me directly.

 At SoulisticArt.com, we’re building a safe space where healing becomes something beautiful.

Thank you for being here today and learning a little more about me. I hope my story helps at least one person feel less alone.

Until next time — remember: you are worthy, you are kind, you are compassionate, you are strong, and you are in charge of your own story.

– Krystal

For Those Who Haven't Googled What Moyamoya is Yet:

Moyamoya is a rare, progressive brain condition where the main arteries at the base of the brain narrow or become blocked. The word “Moyamoya” means “puff of smoke” in Japanese, describing the tiny, fragile blood vessels that form to compensate. These vessels are weak, which increases the risk of stroke, bleeding, and long-term neurological problems.

There is no cure, but surgeries like direct or indirect bypass can help restore some but usually not all blood flow and lower the risks. Moyamoya often requires lifelong management, regular monitoring, doctors visits, and a lot of resilience, something I happen to know firsthand. 

So, if you see me walking funny, standing weird or something, just know I am lucky to have the ability to do so. The way I choose to embrace it and wear it like my best accessory, that will never go away, but just like most people in this world, we are always fighting silent battles. 

So, I ask that you choose to lead your life with kindness, compassion, and love. Something, that amidst the pain, I still struggle to manage, sometimes but I sure do try to lead by example these days. It hasn't always been easy navigating through these challenges but I am hopeful for healing, better days and for reconciliation for anyone I may have hurt in my past. I haven't always been the nicest person but these days, I certainly try my best to be the change and everyday I aspire to be better, then the day before. 

Thank you all for supporting my journey. I am on a mission here to create a space, a safe-haven and a place made with love, that welcomes everybody and anybody to come create and have a chance to be uniquely and unapologetically them. This movement, could change the world, I ask that whoever is reading this comes true to themselves and the most authentically that they know how to be. 

I hope you allow me the opportunity to help you within your healing journey even if it is just by sharing a little more about me, and my life. Be on the lookout, for new events, new blog postings, new art for purchase or just so you can visually experience a vibe unlike any that you have seen before. I hope by sharing my stories, that at least one person in this world, feels a little less alone or like they can achieve anything they set their minds, too.

 I have so much more to share, not just about Moyamoya but I will also share about my past, about relationships, trauma, grief, struggles, poverty, both spiritually and financially, and so much more of everything that made me who I am today. I started here sharing my story of living with Moyamoya because I thought it would give you a little back story of who I am and how my brain works because if I didn't, I think maybe y'all might have thought I was literally batsh*t crazy, and I am but that will be shared in one of my next blog postings. 

Until then, I ask all of you to try to take a break from your normal day and from caring for anyone other than yourself for just, 5 minutes or up to an hour a day if you can swing it and focus on your mental health. 

The best way to show up for others, is with a refreshed mind grounded in your values, morals and ethics. I always say, in order for you to care for others, you must mentally prepare yourself. By taking some time to yourself, you allow yourself the time and space that you need, to do this and show up for you. If you do not show up for you, how do you expect to show up for anyone else? 

Try to mend your mind, body and soul, with a prayer, smudging of sage, grounding methods, yoga, meditation, or whatever relaxing measures you can take that make you feel the best about you and then you can return back to your daily routine. This also allows you to stay grounded in the present moment, which is often overlooked. 

You will hear from me again soon, and thanks again for reading, listening, sharing, or just simply stopping by. 

Remember, you are worthy, you are kind, you are compassionate, you are beautiful, you are wise, you are strong, you are important and you are in charge of your life, today, tomorrow and everyday thereafter. Be kind to yourself and others. 

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