Welcome to my blog! 

Just doing my best over here to chronicle my chronic condition with alliteration, humor, and a whole lot of spoons!

It's My 2-Year Brain-a-versary

It's My 2-Year Brain-a-versary

I couldn’t picture what my 2-year brain-a-versary would look like a year and a half ago.

To be absolutely, completely honest, I can’t say that I’m doing a whole lot better than I was in 2016 either. 

But, when I really thought about why I’d want to celebrate my life getting flipped, turned upside down (announced on social media blog post), it all comes down to this: I listened to my body and I went in.

It’s so simple, but it obviously turned out to be a really big deal. Obviously.

To be 1000% fair, my caregivers (parents) and I are interchangeable regarding how we generally feel about these past two years. (Check out my first attempts at "meme-ing" above.)

Sometimes I feel like it’s Groundhog Day and I completely identify with Bill Murray’s deja vous problem, and sometimes my parents feel like we are on a quest and I am the young hobbit, Frodo. So, there’s that.

And to be fair (again), I identify more with Frida (cool clip about Frida) than Frodo. But I think the point’s been made. 

Anyway, my practitioners are pretty consistently stunned (Physical Therapists, Nurses, Physicians, Surgeons, etc.) that it’s "only" been two years, and that I (we) must really have my (our) shit together. Which is hilarious because I definitely do not! I’m literally a hot mess of probably any symptom you can think of at this point.

My injured brain is orchestrating everything—just really trying her damndest you guys—but instead of doing healing, and typical-things-your-body-is-supposed-to-do (ie: Autonomic functions, like breathing and going to the bathroom), it’s causing so so so much stuff. **see below

So whenever we hear that—only two years?— I think, “great, this has been a completely wild ride, and we’re ONLY in the ‘toddler’ stage of this? wtf!?”

My friends are great, awesome, understanding folks. They know that my best communication is through social media and many of them are meeting those needs. Obviously there are those who prefer social IRL to social media, and that’s cool too! Just know I just won’t be able to hang for awhile.

Seriously come find me on Instagram or Facebook.

So I’ve been documenting this shitshow for nearly two years, and I don’t think I’ve made this quite as obvious as I set out to, so I’ll try to be as descriptive and honest as I can. Take a deep breath, and we’re off:

I wake up everyday desperate for relief.

I’m nauseous, usually have a headache, dog-whistle ringing in my ear(s), am exhausted (but I just got up?! Yup...), have varying degrees of numbness on my right side—which also dictates how well I walk, hemi-ataxia and sometimes paresis on my right side, my right eye is constantly bouncing (can’t stop, won’t stop, ugh), throat moves with it (palate, throat walls, vocal chords, you name it: it’s rhythmically moving all the livelong day), zings and zaps of electricity all over—ranging from 1-8 on the pain scale, and so much more.

(Honestly, I’m not even telling you everything. Don’t worry though, there’s more below!** reasons for this:
1-it’s draining to discuss.
2-gotta save something for the book I write, right? Wright...brothers. (It seemed to flow at the time...))

So since this happens everyday, I’ve developed a thick skin, have learned at lightning speed about my illnesses/dis-eases/disabilities, and am sharing a lot with the world.

I literally can’t even—literally, I say!—when I have more symptoms than the ones that are my “baseline” mentioned above.

It gets real-bad real-quick. Really just a total hoot.

Think of it this way: I wake up everyday with a hangover sans nectar of the gods.

It’s...not easy.

So imagine having a hangover, then breaking your leg, and drinking too much coffee until your mind is racing but you are still soooo tired.

Anyway, the symptom add-ons for me come in the form of stroke-like symptoms ebbing and flowing each day.

It sucks, and is no fun to watch according to anyone who’s seen Taz ** in action since 2016.

**Aw, Taz. I can’t believe I haven’t dedicated an entire post to you yet. My Invisible BFF started as just one brain thing, but has since become all the wacky & wild things going on in my body. My efforts to humorously deal with them while living the professional patient life and 30-something single-gal-life relying on her parents a la a baby bird—is more on brand now for me, than when I originally intended to hilariously document my healing journey.

Back to Taz. Taz is short for Tazmanian Devil because he is quick, and has asshole symptoms in tow.

(Actual Taz footage below) 

Taz is a TV static-like burning across both eyes that turns me into a slurry vampire. When he comes, 1-2 times per day for 2-7 hours, my one non-patched eye (even the one with the patch tbh) becomes extremely sensitive to light, I have dysarthria (interrupted/distorted speech), the dog-whistle tinnitus becomes louder than my music and soundscapes put together, parts of my body rhythmically move akin to my throat (see “baseline” symptoms) from the inside of my body—which is the wildest feeling, AND IF I’m particularly effed: vertigo and weakness to boot.

Talk about surrendering control, amirite?

So people who know this (again, very very few know the complex details), are understandably like “omg! wtf! how are you even mentally and creatively thriving right now?!??” , and “you are strong as hell!” And other nice things that are really helpful to see often, so that I am reminded of how much support I have.

I feel like by sharing as much, or little—depending on who you talk to—, as I do with the internet world gives me purpose for one, and ultimately the best distraction. I’m constantly joking and thinking of funny things to design or write about.

I don’t judge these kids taking selfies and documenting everything they’re doing anymore.

I have to do it for my mental health. (A selfie a day keeps the doctor away...wait...)

To me, pictures are the thing I need to be reminded of the rare day I did a thing. When your world has 40 hours in a day, and most are intense, you want to remember the better ones.

I also have to because it keeps me connected to the “outside“ world; which is no easy thing when you're waist deep in a health crisis.

And lastly I have to, whenever I am able throughout the week, (as it says on my Instagram profile) write-art-rinse-repeat.

These hobbies serve as both a distraction, and a way to organize my thoughts & to attempt to find meaning in it all.

 Image of "Perserverance" and "Power" from Affirmators card deck.

Image of "Perserverance" and "Power" from Affirmators card deck.

Our little group (of my parents and I) is constantly making jokes. We have a lot of fun thank goddess, because most of my day is rough. To be honest, my situation has degraded in the last year, and the only way I get through is I keep breathing through it.

Trust me when I say that’s actually how I get through most of my days. And I’ll continue to do so until there’s a cure that doesn’t require brain surgery. (Reminder: besides being a chicken about it, my situation is inoperable anyways. #Ugh) Specifically: breathing air, lots of ice packs, sunglasses/hats, medical marijuana (Leafline Labs), medicine, supplements, and social media are a big part of my life.

As I thumb (my left hand only version of writing on my phone) this long-overdue post, as I am laying in bed, I realized why I wanted to write this brain-a-versary post in the first place.

At first, I wanted it for you, because I felt like I owed my readers some sort of explanation for the inconsistency of my writing, and for an update on what the hay is going on with me.

But actually I realize I am writing this for MYSELF. I needed to get this off my chest and out into the world. It is so mentally healing to reveal more of my story.

For the record, I can’t wait to do the damn thing and get back in that pool, and start wheeling around my neighborhood in Minneapolis!

But I can’t, not quite YET.

I CAN, however, keep my creative energy high by engaging as much as I possibly can in my hobbies, doing things that make me feel good, and breathing.

 Erin and her wheelchair "Golden Hotwheels" at a brewery. The neon sign in the background reads: NORTH.

Erin and her wheelchair "Golden Hotwheels" at a brewery. The neon sign in the background reads: NORTH.

My advice

  1. Just keep breathing

  2. Find your advocates and caregivers

    • It's not easy to do, but let them help you. Be vocal about your needs, and keep educating about your condition!

  3. Everything else is up to you

    • Check your attitude towards your carers. For the most part, they're doing their best too.

  4. Trust yourself, your body always knows what’s up

    • It’s very cool to listen to what your body is telling you; you might even learn a thing or two about slowing down and taking the time out for it.

Happy 2-year brain-a-versary to my body, mind, and spirit. It’s been ridiculously hard, but I've made it through every one of my toughest days. And that is a win.

xoxo

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