Life in a Wheelchair: Rare Disease Awareness Month

Hey everyone! It’s rare disease awareness month, and I am super late to the game! It’s been a hot hot minute since I’ve posted anything on here but I felt compelled to share something for this month, as I, if you don’t already know, have a rare brain disease called Idiopathic Intracranial Hypertension.

Basically, my body has the symptoms of a brain tumor, but what’s going on in up in my head is that I’m producing way way way too much spinal fluid, which normal people produce a way smaller amount of. This condition, when it’s not idiopathic, meaning when they can pinpoint an underlying cause for the Hypertension, is often life threatening as the brain can’t handle the increased pressure. For example, people sometimes develop this condition when they get into a really bad car wreck, and if they can’t find a way to get rid of the excess buildup, it can kill you.

Like I said, think brain tumor symptoms. However, because I am an idiopathic chronic case, they have no idea why I have it, where it came from, or how to get rid of it. There are only ways to manage it and some people find a treatment that manages to get rid of it, and for others those methods don’t get rid of it. I am the treatment to help manage it but it isn’t going away kind, but the condition is still benign. Now that I’ve straightened that out, I wanted to talk a little about how I dealt with some of the new aspects of my life after I was diagnosed up to now in honor of awareness month.
(If you want to learn more about IH, visit the Intracranial Hypertension Research Foundation website.)

I remember the defeated moment that I first realized I would have to use a wheelchair. It was, to me, one of the worst things I would have to come to terms with. It was at Halloween Horror Nights just a few years ago, and I could barely get through the night. I waited in line and sat down as often as I could, my head swimming and throbbing, my stomach turning; my body was winding down to a complete halt. As the sun went down I found myself walking into one of the houses and I remember little other than the rooms spinning and every step weighing on me. I remember that the plan was to continue on until park close, but I could hardly make it through the exit to go sit down. I sat down and rested for at least 3 hours before I forced myself to stand back up.

My sister and I in Germany together before I had IH
I think I did one more house and I couldn’t do any more, so I went to the show that was there - Bill and Ted’s Excellent Halloween Adventure - and had to go back to the hotel, missing the whole night and having my sister miss it as well. I felt completely defeated. I felt devastated.

My sister and I in Germany before I had IH

 I could barely get my legs to move. When my sister went to shower in the hotel room I remember breaking down in tears. Not just because my body had broken down on me, but because she had pointed out to me that I needed to use a wheelchair, and I knew that despite my immediate inner response rushing to deny this, she was right. So for the rest of the trip, I stood in line and rented a chair from Universal every day. “This is just a temporary thing,” I told myself, “You need this now, but you won’t need it soon. This is just for now.” My next trip down, I borrowed a wheelchair from church. “Just for Halloween Horror Nights,” I told myself, “It’s just for the parks.”









I told myself this every time I used this chair. When I needed it in the mall. When I needed it in a store that didn’t have a convenience shopper. When I was anywhere I would need to be on my feet for more than a few minutes, I told myself “it’s just temporary.” Then one day, I realized how long I had borrowed the wheelchair and bought my own. What did I say to justify this? “I’ll only need it for now. When this is through I won’t need it anymore.”

Me and my amazing friends at HHN 2017

It was like this for longer than I care to recount. Needing the chair, denying that I needed the chair, and back and forth I went. I stayed in limbo in this constant state of denial - feeling ashamed for needing a wheelchair, feeling ashamed that I could no longer do the things I used to do, feeling shame for being who I now was. It was a lonely, bitter feeling that came creeping into my thoughts when I tried to sleep and made me want to hide myself away because I couldn’t stand who I was.




Let me make this clear, being disabled and needing a wheelchair weren’t the only things hindering my ability to want to face who I was, but in the face of so many reasons, I am able to say with confidence that it is the reason I was ashamed. I would think back on my able-bodied life and remember the things I could do. Physical exertion didn’t used to be so hard. I used to be able to jump and, though I hated it, sprint and run. I could kick around a soccer ball, I could jump on a trampoline, I could even ride roller coasters. I could do simple things before without draining myself so much too, things that might sound utterly ridiculous to anyone able-bodied, like changing clothes, showering, bending down, and walking. I despised it. I mourned it. I began to grow resentful of my past self. I used to complain when I would walk so long my feet were killing me, and that made me want to go back in time and smack myself as hard as I could. “What I wouldn’t give to be able to walk like that now,” I thought. I used to do so many things that, until I couldn’t do them, I took for granted, the way it usually works with human beings. That’s why songs like Big Yellow Taxi exist. We never know what we have until it’s gone.

There came a day, amidst all of the madness I had created in my head, when I realized that I had been lying to myself. I relied on the wheelchair. It was time to accept that. It wasn’t going away, and I didn’t need to keep willing it away. Besides, I had been through so much with it already. In my wheelchair, I became a new person. In my wheelchair, I learned, and am still learning, to accept my new limitations and my new self. In my wheelchair, I met amazing people and had amazing experiences that I otherwise would never have had. I would never have met my friend and fellow gal on wheels, Jessica, had it not been for the fact that I was in my wheelchair. I’m confident of this. I wouldn’t have met her son, Stephan. I wouldn’t have met Jose. I wouldn’t have met any of these amazing, wonderful people if I had not accepted what I needed.

I met Jessica when I was still in a park rental chair. Jessica, in so many ways, helped me accept this new reality, and not just to accept it but to make it more than just a thing I have to live with - something that I should embrace rather than be ashamed of.

Jessica in her scoots with Sam the skeleton

I always recognized Jessica because she was in a scooter, all lit up in Halloween lights, with a skeleton named Sam on the back like a mascot. She taught me the ins and outs of how to better take care of myself now that I needed to get around differently. She told me to stand up for myself, something which I had always done as an able bodied person but for some reason, when it came to my wheelchair and mobility, I just didn’t want to do. I didn’t think I deserved it, simply because of conditions that aren’t my fault. When I look back at how crazy that sounds, I can’t believe I ever let myself feel like that. Slowly let it sink in - I didn’t believe I was worth taking care of myself because I was diagnosed with a brain disease that I cannot control. Jessica basically called bullshit, for lack of a better way to say it, and told me to take care of myself.

I took inspiration from her and wrapped lights around my chair, which felt unexpectedly empowering. When we ride around the park together, we look like Disney’s former Electric Light Parade. I laugh and I enjoy my time at Halloween Horror Nights, with all of my amazing friends rather than feeling like an alien in my own skin. 

Me with cast from Bill and Ted's Hween Adventure and my friends

I no longer feel ashamed to sit in my own wheelchair. I no longer feel ashamed to take care of my basic needs. I no longer feel ashamed that I am a disabled girl in a wheelchair. I feel different, and I’m not quite sure what that different is just yet, but I realized along the line that I don’t ever want anyone to feel about themselves the way that I did for so, so long. It’s like when I was bullied in school - when I was young I let it define how I thought of myself, and when I grew up I wanted no one to be bullied into hating themselves like I was, except this time I bullied myself. I can’t imagine that I am the only one that has felt this way about their disability, no matter how big or small the impact on their life. If reading this helps even one person the way that Jessica and my other friends helped me, I’ll be happy that I shared my story.




If this is you, if you’ve been diagnosed with something or you’re trying to figure out what’s wrong and everything feels completely fucked up - you are different now, and your life will never be the same. 

Wild Stallyns & Jack the Clown (HHN) self-made decorations

It will change you forever. But it doesn’t have to be bad. It’s just a new chapter. I can’t tell you what will happen but I can tell you that you’ll figure this out eventually, and please, please don’t neglect or resent yourself along the way. Don’t ever feel ashamed of who you are or what you now need. Also, you’re not alone. 💜💜💜

P.S. I used to avoid taking/posting pictures of me in my wheelchair like the plague - screw that!

My best friend and I with Victoria Atkin (Evie Frye from Assassin's Creed: Syndicate

My Evie Frye wheelchair Dragon Con badge

My best friend and I with John Noble

Self-made Stranger Things Alphabet Wall decoration for chair

My friends and my cosplay left to right: Nancy, Max, Joyce, and Eleven from Stranger Things

To donate to or learn more about IH, visit the IHR Foundation website:
IHR Foundation Website
IHR Donation Link



My social media:
Facebook
Instagram
Bloglovin'

Surviving the Con: Preparing for Cosplay

Grüße!

So I think the title is self-explanatory, but I'm going to say it anyway - the con life isn't for the weak! ;) Seriously though, it snowballs into more of a stressful affair than you'd think, preparing for a con. Especially if you cosplay! You've got to figure out exactly what you're going to cosplay as (obviously), and then you've got to figure out how in the world exactly it is that you're going to put that cosplay together, and all before your time limit. 

It creeps up on you faster than you think! What outfit should I wear? What wig do I need? What accessories? Is that even allowed at [insert name here] Con? What makeup do I need? You'll find yourself swirling down that vortex really quickly. Funny enough, the reason I found myself in the makeup world is because of preparations for my Dragon Con outfit last year, when I dressed up as Disgust from Disney/Pixar's Inside Out. Thank you, Youtube, for you saved my life last year and sent me on a completely unexpected one that I never thought I would continue.

Side note: Seriously, if you've never checked out makeup tutorials on YouTube, you're missing out. A special mention to a makeup-guru that you couldn't possibly miss or mistake, NikkieTutorials. She is extremely talented and empowering, and I bow down to her skills. She has taught me half of what I know about makeup, and I'll never forget it!

Back on topic, that picture there is me last year at Dragon Con! I was and still am actually very proud of how that turned out, being that my makeup skills were at the 'I don't know what I'm doing and I've watched makeup tutorial videos a few times in the last two weeks' level! My eyebrows were completely green, I got a huge pair of green lashes, and a pair of green contacts, as you can see... Those contacts killed my eyes. Word of warning to anyone who has never worn contacts before, I wouldn't advise trying it out for the first time on a Con day. If you feel the need to, bring the contacts case with you so that you can take them out when the inevitably irritate your eyes... trust me. Just trust in me.

As for my makeup here, I took inspiration from a Poison Ivy makeup tutorial on YouTube. If I were doing Disgust this year, you could bet you would see more than the simple makeup I did last year, but I digress. There are many more tutorials out now that are specifically about Inside Out characters, but since there weren't then, Ivy saved my life! Probably not a coincidence, as she's my favorite female DC villain! If you want to go for not just face makeup but body, I recommend MadeYewLook on YouTube. She is beast.

As for the rest - putting this all together was a ball game, let me tell you! You start head to toe, and if you're anything like me, you want to make it as perfect as you can. Long green wig? Check. *Warning - not for the faint of heart - the heat and the weight of that wig, they get to you!* ;) Contacts? Lashes? Makeup? Check. And let me tell you, picking all those out, though they may seem trivial, can take hours each. Should I get neon or forest green? It feels a little like picking out paint colors. Have you ever done that? Whatever choice you make, you always doubt it. I went through at least 4 different lipstick shades before I chose red. I was going to do lilac but didn't think I could pull it off at the time. Fast forward a year and I wear purple on my lips like it ain't no thing! *This look here was one of my makeup tests for Disgust!*

But you can't stop with makeup! I wanted to have an outfit that represented my girl, but I also don't know how to sew yet, so my sister and I had to get creative. Luckily, I had a green dress already that worked really well for Disgust, but my sister was to be Joy, and she had nothing. You wouldn't believe how long we looked for a dress that would work with no results. So we finally turned to... that's right, folks, dying some fabric! For this, you need a giant pot, and I do mean that, some good fabric dye, and just the right amount of mixture for your color. (We used Rit Dye for ours, and you can find whatever color you want and how to achieve your desired look on their guide here.) You can only keep it in the water for so long to get the color you want, and God help you if you spill the color! But do I recommend? Heck yes! This was so much fun. And since I couldn't find a pair of shoes I wanted, I turned to a favorite of mine - shoe painting! I cannot for the life of me find a picture of the Disgust shoe I painted, but I made an Inside Out shoe and an Anger and Sadness shoe! For this you need any old canvas or fabric shoe, acrylic paint, and Mod Podge. Use as much acrylic paint as you want, but only do one layer of Mod Podge, or the shoe cracks and your work can easily be destroyed!

Another project we found ourselves working on was the accessories that the characters carry around with them, and myself, my sister, and our friend Bogdana (and she has an awesome blog about all the books she reads that you should check out!), landed on carrying around their memory orbs. Although Joy also carried around a backpack, so we bought a plush Bing-Bong and a plain canvas bag that we dyed purple with the same Rit Dye and that I then painted over with the acrylic paint and Mod Podge that I mentioned before.

We made the memory orbs with ornament balls that open up from Hobby Lobby, and we got some standard school glue, foam paint brushes, glitter, and shoelaces. First, we lined the inside of the ornament balls with glue using the foam brushes, then we dumped some glitter inside, closed the ball, and shook! We just did this with each color until we were satisfied with the glitter coating. When those were dried and done (we left them sitting open overnight to dry), we closed them up and stuck some shoelaces that we dyed the appropriate color through the loop at the top of the ornament and fashioned it into a bracelet of sorts. See, we knew we wouldn't necessarily want to hold on to them all day, so we tied a good knot at the base of the ornament loop, and when we were ready on the day of the Con, we tied the other end around our wrists. It was lightweight and portable, and it gave us something fun to play with all day while we waited in the lines for panels! We're really just kids at heart, after all! In these pictures, you can see Sadness holding up her memory orb and Joy holding hers and pointing to Bing-Bong!

We had loads of fun at Dragon Con and took a ton of pictures of amazing costumes there - some of these people just knock it out of the park and blow me away! Like all of these guys that absolutely killed it!

 

 *top left - Cosima & Delphine cosplay from Orphan Black; top right - Sherlock & Irene cosplay from BBC Sherlock; bottom - Thranduil & Tauriel cosplay from The Hobbit

I hope you guys like what we did or maybe picked up some ideas at the very least! Enjoy the nerd life, everybody!
Oh, and if you get anything at all from this... Plan ahead! It's worth it in the end and usually really fun to put together!

Bis zum nächsten Mal!
RayKay

My social media:

Facebook

Twitter

Instagram

YouTube

Bloglovin'

If you have any questions or comments, feel free to leave them here!