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



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What Makeup Taught Me About Loving Myself

Grüße!
Today I thought I would post about what makeup has taught me about myself. First, don't get me wrong - I could talk about makeup all day long. Clearly I could tell you my favorite brands and products without skipping a beat, but I didn't always feel the way about makeup that I do now.
I'll be very raw here. I took these pictures only about two years ago, and the only reason I posted them is because I was in another country and trying something new to help push me out of my comfort zones. Honestly, half the time I posted a picture because it turned out well it was because when I looked at the picture, I removed myself from the person that was looking back at me. Those eyes, that expression - they couldn't possibly belong to me. There was always something deeper going on that I didn't want to remember - I hated what I saw when I looked in the mirror. This, the older I get, the more I hear, is sadly something that most women see when they look at themselves. So it didn't stand to reason in my mind that I could take a photo of myself bare-faced *I think I might have lightly filled in my brows* and be okay with what I saw. Most of the time, when I left my apartment without makeup on I felt suffocated. I was very aware that I didn't have anything on, and I was very aware of how that made me feel.

Let me be clear here, it wasn't about what anyone else would think of me, it was what I thought about me. I decided long ago that the opinions of others didn't matter, but if there is one thing I am good at doing, it is being my own worst enemy. Without makeup on, I would purposefully avoid looking in the mirror. It wasn't just on the days you wake up with puffy eyes or a huge pimple on your forehead, it was every day. I saw an ugly face staring back at me, one that I wanted to cover up as quickly as I could. So grab that eyeliner and concealer, you're going to cover up what you can and distract from the things you can't. That's what I always told myself, and once the makeup went on, I would sigh - half a sigh of relief and half a sigh of defeat, because this was as good as it was going to get.

Now, think of the stereotypes you associate with women that wear makeup every day, then think of the stereotype you have in your mind about a woman that never wears makeup. Women are either whatever version of "too much" someone deems them, or not enough. 'She's got so much makeup on, she looks like a clown' versus 'She should put on a little makeup so it looks like she's trying.' Most days, to many people, I am probably the latter. I do have days, though, when I go out in public with a full face of makeup on - and not just for costumes. The difference between now and then is that I don't hate myself for doing it.

The comments didn't stop - hurtful, hateful, and judgmental people will always exist. When I hated myself, I ignored them and held my head high because their opinions didn't matter to me. When I hear them now, I ignore them and hold my head high not just because their opinions don't matter - and to anyone and everyone reading this that has ever had something hateful said you, their opinions will never matter - but because I no longer believe the rubbish that they're spewing as my own truths. I get all kinds of comments from all kinds of people ranging from degrading and disgusting to uplifting and kind, but once you learn that the only opinions that matter are the ones that you let matter, they lose their bite. Don't get me wrong, I have had plenty of years worth of being bullied enough to know that the phrase 'sticks and stones can break my bones, but words will never hurt me' is nothing but a farce. They can and will hurt you, but only until you stop letting them.

I bet by now you're wondering what the hell any of this has to do with what makeup has taught me. Makeup, as I said before, was only a means of covering up a face that I thought should be hidden from the world. Through makeup, though, I discovered just how beautiful I was without it on, and I stopped feeling ashamed of feeling beautiful in my own skin. When I put on a fresh face of makeup, I might have brightly colored blue lips or glitter everywhere, and that's okay. I get to create whatever art I want to create, and at the end of the day, I get to wipe it all away and see what's underneath. Guess what? I happen to like what's underneath. Underneath was the artist that was inspired to love herself and create art from a few brushes and products. I don't feel like a girl hiding in the shadows anymore, trying to snuff out the light and cover myself up. I feel like a woman that stands in the light and forces the darkness to get out of my way. So now when I grab a makeup wipe and watch as it all disappears, I look forward to seeing the canvas beneath. I wouldn't trade that feeling for the world.

This post was inspired by a friend of mine, Travis. He's a beautiful soul and a beautiful person, and I feel lucky to know him.

Link to Travis' Instagram

Did I mention he's also hilarious? He's the best. ;)

Bis zum nächsten Mal,

RayKay

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