The Coronacrisis

It’s March 18, 2020. I’m currently living in a world where a few days ago, I made a remark about being excited to buy toilet paper. Those are words I never thought I’d utter just mere weeks ago. Panic has swept across the world as the novel Coronavirus creates its impact. There are ways to combat the spread, though. It’s called social distancing. We are also seeing schools, restaurants, and more shut down to help prevent the spread of this illness.

At the time of writing this article, there are currently seven cases of COVID-19 in my state. On one hand, it may seem silly to begin shutting things down. Why shut everything down before there is a problem? That is precisely the point. The point is to shut it down before it spreads. The point is to prevent it from spreading to those who cannot fight it off.

Across Facebook, across Twitter, across the Internet as a whole, there are so many people making really unwise choices. They’re taking the time off school and work to go party. They’re taking the time off to go on vacations. The point of shutting everything down isn’t to go off and have adventures. The point is to stay home.

Math and numbers aren’t my thing. Graphs don’t compute in my brain. But I can wrap my brain around this. This is where we’re headed. I know a lot of people say that it’s “just a bad flu”. For many people, it will just be a cold. But if you’re high risk the prognosis is far more grave.

We can all help prevent a tragedy. Wash your hands. Stay well hydrated. Do what you can to take care of yourself. And please, if you can, if it’s at all feasible, stay home. This isn’t the time to still go out and do things! This isn’t the time to live it up on the town! Look at the numbers. Look at them climb. This is a potetenial tragedy.

But yet, people are ignoring the warnings. People are hell-bent on continuing their daily lives, regardless of the cost. That cost will be the loss of members in my community. It’s on us, ALL of us, to do what we can to protect those who need it most. I know not every single person can stay home. I know the world isn’t that cut and dry. But a lot of the people who are refusing are fully capable of staying home. They just don’t want to.

Please, stay home. Wash your hands. Stay well hydrated. Wash your hands again. Don’t travel. And for the love of Pete, WASH YOUR HANDS.

Rare Disease Day 2020

It’s rare disease day. A lot of people across the Internet have been talking about and educating on their rare diseases. I’ve talked at length in various places about my particular disabilities, so that’s not what I’ve chosen to write about and observe today. What I will write about is how living with rare disease affects me.

Right now, I am having more health concerns that usual. It’s not easy, and it’s stressful. I grapple with so much. On one hand, I want cures for the disabilities that plague me. I want to be able to work. I want to be able to go back to school. I want to do os much more with my life than what I currently do, but my health says nope.

I often feel like a bad disabled person, because I struggle with being disabled. I struggle with being in pain all the time. I struggle with my vision. I struggle trying to accept that there are so many things I simply can’t do. My rare diseases impact me on such a profound level that it really messes with my head at times.

I feel like I can’t make anyone happy. One group of people seems to expect me to want a cure. Another group of people seem to think I should just accept it. Another group thinks I should make it my identity. Another group… you get the picture. While my disabilities are very much a part of who I am and are intertwined with who I am, they’re not all that I am.

It’s rare disease day. I’m hoping that one rare disease day, I can write about how my life has changed since a cure. I’m hoping one rare disease day, I can write about all that I’ve accomplished. But this year, I’m writing about just how hard it is. It feels like as a disabled person, I’m supposed to meet certain standards that I just can’t. And that’s okay that I can’t.

This year, it’s hard. This year, I don’t want to have rare disease. This year, I am desperate for a cure. And that is perfectly okay.

each day she goes on is a day that she’s brave

As someone who has dealt with depression and anxiety their entire life, it feels like it’s going to be impossible to ever overcome this. I feel like this has become all I’ve known. I feel like it’s impossible to know anything else. I feel stuck. I feel trapped. I feel hopeless.

I keep finding myself wondering what it would be like not to be like this. To be free. To not constantly be fighting a war inside myself. And I realize I can’t even fathom it. It’s so far out of my reality that it seems unachievable.

I find my brain crashing, throwing up a proverbial blue screen of death. I feel all the emotions causing my system to overheat. My depression. My anxiety. My memories. Everything because too much, and I become trapped.

I wish that I had an easy answer. Changing who I’ve always been is hard and it’s scary. I know it’s brave to go on. I know the brave thing is to want to change. But I don’t know how to do these things.

And so, I keep going. I keep fighting. I don’t know what toward, but I keep trying to achieve something better. I push toward knowing something different, to a world that is beyond my wildest dreams.

overload

I tried to write a freeverse about overload. It kind of started as a poem, but then wasn’t really going that direction. I often get sensory or emotional overload. For me, the two go hand in hand. My emotions become, simply put, too much. As a result, I get too many feelings. Which can lead into my senses going into overdrive. I want so desperately to communicate, but I can’t. And I figured out a way to try and explain what I feel like when that happens… so I’m sharing it in hopes it helps someone else.

so many feelings,
colors and shapes and symbols
mixing together,
becoming static noise

becoming completely trapped
in a prison within myself
as the colors and shapes and symbols
blend together

finding myself longing
for a way to express myself
instead, i retreat
within my self

searching for words
that don’t even exist
as the sounds crash
the key locks

i’m desperately wishing
to let you in,
to let me out,
just to escape

but until then,
the sounds, colors, and symbols
swirl inside my head
leaving me trapped

Untitled Mental Health Post

Anxiety. Depression. ADHD. Autism. PTSD. They all blend together to create the filter I view the world through. And as a result, I often find myself frustrated and overwhelmed.

There are so many times I don’t want to be the way I am. I don’t want to meltdown. I don’t want to shutdown. I don’t want to forget things. I don’t want to repeat things. I don’t want to remember things. I don’t want to loop things. I don’t want to obsess.

I don’t know who I would be without these things, and I don’t know how to function without these habits. It’s a world I’ve never explored and a reality I’ve never known. And it’s frustrating.

I feel like I’m fighting a battle with myself I can never win. I feel like I’m a pawn in a game that I can never stop playing. I feel like a glitch in a video game that happens every single time things get to a certain point.

I don’t know what to do with myself. I don’t know how to get better. I don’t know how to overcome all this stuff. Because I get stuck. And I just can’t figure out how to be not stuck anymore.

My disability held me back

Something I’ve run into multiple times throughout my life is people telling me not to let my disability hold me back. If you take a look at a Facebook group for any disability, you’ll find it run rampant with people who talk about how their disability doesn’t hold them back. You will see people saying how their disorder doesn’t define them. You will see people talking about how despite a disability, you can achieve anything.

We see all the people talk about how their disabilities didn’t hold them back. We see disabled people who got their degree held up on a pedestal, as something we should all achieve to be. We see disabled people achieve great things in sports. We see headlines about disabled people who defy the odds. We see the “pretty disabled” people glorified in media. But what about those of us who just exist? And why are we turning these disabled people into a feel-good story? (That’s another post for another time).

I don’t want us glorified in media. I don’t want us to turn into inspiration porn. But what I do want? I want it to become acceptable for our disabilities to hold us back. Some disabled people have no choice but to work. Some disabled people have no choice but to not to. Some disabled people get degrees and jobs. Some disabled people don’t.

I am so tired of having to explain why I am a college drop out. I am so tired of having to explain why my disability DOES define some aspects of who I am. There’s nothing bad about me being disabled. There’s nothing bad against pushing back those who say that my disability shouldn’t hold me back when the truth is, it has. By trying to ignore that and trying to push through, I further damaged my health.

I long for a day when we are taught that it’s okay to be disabled. We don’t need to use pretty language to make it sound better. We don’t need to push ourselves through pain and illness to be accepted in society. Disability is natural. Disabled people need to learn that we don’t have to be someone else’s inspiration, but that we can live our lives in the way that’s best for our own health.

The only disability is a disability. Full stop.

The struggles of self ableism

As a disabled adult, I often fall victim to internalized ableism. I find my own biggest critic being myself. I read so many articles about the dangers of inspiration porn and the ableist struggles so many of my friends made. As a disabled person, I’m desperately trying to navigate a world that wasn’t made to accommodate me.

I’ve talked about being tired of talking about ableism. I’ve talked about self-ableism in the past, but I feel like it’s a subject that needs to be revisited. Because I live in a world where I’m constantly seeing headlines about disabled people doing amazing things or an able-bodied person doing something nice for a disabled person.

And in a way, it gets tiring. Because I don’t want to be anyone’s inspiration merely for being disabled and I don’t want anyone to take pity on me simply because I am disabled. At the same time, I struggle with the same issue. I will never be making headlines for doing impressive physical feats. While I do push my personal limits and I do surprise people with what I can do sometimes, what is the cost?

Because I live in a world where disabled people are often praised merely for existing, I find myself wondering when I will be enough. I struggle with self-ableism when I see other disabled people get jobs, graduate from college, or do other really cool things. I wonder why I’m good enough. I wonder why these people can achieve these things, but I can’t.

It’s April, which means it’s “autism awareness month”. I see autistic people praised for merely existing. I see autistic people painted as burdens and difficult to love. I see autistic people being both held up on a pedestal and thrown under the bus. There are all these messages about what it’s like to be an autistic person and what it’s like living with us. As I read all this, as I’m taking it all in… I find myself taking it in much more than I realize.

We talk so much about the dangers of ableism, but what about when the one who is most ableist is yourself? The ramifications are serious. Depression. Anxiety. Physical. Is there an answer for it? I don’t know what it is. But I do know that this is a very real problem that we need to shed light on and accept that it’s okay to struggle with the very same thing that we speak out against.

Dear Athena

Image description: a photo of a sleeping torbie cat.

Dear Athena,

You came into my life in March of 2013. I remember the first time I picked you up. I remember the loving look I gave you and the way you settled perfectly into my arms. I remember being so scared that you would hate me, or that you wouldn’t love me.

You were a difficult placement. There’s no denying that. But, Athy, you were so incredibly loved. Not only by me. Not only by everyone who was blessed enough to meet you. But by your dozens of fans on Facebook. So many people cared so much about my whinybutt!

I couldn’t have been more wrong about you. You loved me, and I loved you. I went in with the intent of rescuing you, but in turn, you rescued me. You saved me from depression. You woke me up from my nightmares. You calmed me from my anxiety attacks. I loved you, my polydactyl wonder kitty.

We went through so much together. Two surgeries. Two moves. The loss of people I loved. Even know I knew it would happen, nothing prepared me for the last time I held you in my arms. Athena, I miss you. I miss you more than I can express. Pet grief is so very real, and I feel that we don’t talk about it enough.

I miss you. I think of you every day. Your last moments replay in my head. I often wonder if I could have saved you. I assure you, Athena, if love alone could have saved you it would have. I know I made the right choice, though I often doubt myself.

Thank you for giving me nearly six wonderful years. I love you.

Image description: a fluffy torbie kitty with green eyes is perching on the end of the railing.

As April Approaches

As April approaches, it becomes increasingly more difficult to be autistic. Throughout most of the world, April is labeled as “Autism Awareness Month”. People, both well-meaning and not, start “lighting it up blue.” To learn why you shouldn’t light it up blue, read this. If you use to light it up blue, read this.

As April approaches, autistics like me find ourselves completely worn out. We find ourselves constantly having to tell everyone what the problem with “awareness” is. We find ourselves weary and worn, our voices drowned out by allistic parents.

I have a lot of autistic friends. We are all varied, unique people. We’re not high functioning or low functioning, we’re just autistic. We use various methods of communication, every single one valid. We stim. And each and every one of us are autistic.

As April approaches, it becomes tiring. And the thing is, even when April ends, the aggression never ends. So please, have some compassion this April. Don’t rely on your autistic friends to do all the educating, but at the same time don’t speak over us.

As April approaches, it’s easy to fall into the mindset that this is the only time the ableism against autistic people amps up. However, we face ableism every single day of every single year. It isn’t unique to April, even though it is worse in April.

So please, check on us. Make sure we’re okay and taking care of ourselves. Make sure that we’re not wasting our limited energy and time on people who simply won’t listen. Remind us to fight the battles that matter, and let go of the rest. Remind us to mourn the dead, and fight like hell for the living. Because as April approaches, we’re going to need a little extra love.

You will be found

Have you ever felt like nobody was there?
Have you ever felt forgotten in the middle of nowhere?
Have you ever felt like you could disappear?
Like you could fall, and no one would hear? 

I find myself looking at the screen, willing my fingers to dance across the keys. I find myself filled with words and emotions, desperately trying to free them from myself. I find myself being overwhelmed by everything. I find the too much simply BECOMING too much, and wanting it to be less much. I find myself trapped behind walls I built for myself and I don’t know how to brings those walls come tumbling down.

There are so many emotions I feel bubbling up inside me. And I feel like I let them define who I am. I feel like they become the filter I view the world through and that they taint every interaction I have. I try to hide the pain. I try to hide the fear. I try so desperately to throw up the walls and push out the world.

I don’t know what it’s like to not be depressed. I have no clue what it would be like to not be anxious. So many people talk about having a before and after anxiety. They talk about life before depression and before trauma. Me? I don’t have that. I’ve never known what it’s like to be healthy. I feel like I’m trapped in a world that I wasn’t prepared for. I feel like I’m in the midst of a planet where I simply wasn’t taught how to cope.

Well, let that lonely feeling wash away
Maybe there’s a reason to believe you’ll be okay
‘Cause when you don’t feel strong enough to stand
You can reach, reach out your hand

I often find myself wishing things could be different. I find myself not relating to people saying they wish they could return to childhood, because I never want to be in that position again. My psychiatric disabilities started as a child. I don’t know how to return to a prior level of functioning when that literally doesn’t exist.

And so, I find myself in the darkness once again. I am desperately searching for the light. I find myself desperate for the peace and comfort that I’ve never known. I find myself trapped inside a prison where I’m both the bailiff and the prisoner.

I find myself scared to hold out of hand, in case someone might actually take it. I find myself further trapping myself because I don’t know how to set myself free. I find myself desperately wanting to be found, but at the same time I try to keep hidden. I find myself not knowing how to be found, and like I’m completely lost.

Even when the dark comes crashing through
When you need a friend to carry you
And when you’re broken on the ground
You will be found

But I find myself slowly learning to trust. I find myself trying to tear down the walls. I find myself letting people help me pick myself up on the ground. My lifelong depression isn’t a flaw in my character. The anxiety dancing through my brain isn’t because I’m broken. It’s merely a side effect of being a human and it’s a part of existing.

And yes, I will be found. I will build a new me, carefully crafted from both the good and the bad. Just because I don’t have a prior Nora to return to doesn’t mean that a new Nora cannot be crafted. I can take the pain, the heartache, the anxiety and turn it into who I want to be.

I may be broken, but it doesn’t mean I’m hopeless. I may be struggling, but it doesn’t mean I will always be. I may be scared to hope, but it doesn’t mean hoping is futile. There’s strength for today, and bright hope for tomorrow. The ones who care for me are there to lift me up. And I will be found.

So let the sun come streaming in
‘Cause you’ll reach up and you’ll rise again
Lift your head and look around
You will be found

Lyrics from “You Will Be Found” from the musical Dear Evan Hanson