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Just because I’m disabled

One of my pet peeves is when people tell me they could never do what I do. That they could never juggle all these appointments, juggle all these meds, juggle all these health problems. I absolutely hate it when people tell me that they could never be that strong. When they tell me I’m SO strong, SO brave, SO courageous for merely living the hand live dealt me.

Image is of me nearly a year ago, wearing sunglasses and in a hospital gown.

Image is of me nearly a year ago, wearing sunglasses and in a hospital gown.

What no one tells you is that when being strong is your only option, when the so-called bravery is the only way to live your live, it’s not all it’s cracked up to be because to be honest? There are days I cannot do it either.

The truth is I’m merely living my life to the best of my ability. The truth is that sometimes I have a bad attitude and that is okay. The truth is sometimes I am not brave. Sometimes I am not strong. Sometimes I break down. And the fact of the matter is, there’s nothing wrong with that. It’s unhealthy to be strong and brave all the time.

Why am I considered your inspiration just for doing what is literally my only option? Seriously, most days I sit on my ass playing video games. And I have a lot of supports. It’s not like I do it all on my own anymore, though it seems like I have to far more often than I should.

Being brave and strong isn’t what I do. What I do is live my life. Just like anyone else. Just like everyone. Just because I’m disabled doesn’t mean that I live my life any differently than you do and am worthy of such words. Because really, when living this way is your only option, you just DO.

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What I Want You To Know

What I want, no, need you to know about how my brain works.

What you should know is that when I play with my phone while you’re talking to me, it doesn’t mean I’m not paying attention. It doesn’t mean that I don’t care about what you have to say. It doesn’t even mean I’m being rude. By playing with my phone, or sometimes iPad, I’m keeping myself grounded in a world that’s scary to me. I’m stopping the thoughts and obsessions from spinning in my brain. I’m stopping the sounds and noises from pulling me away from reality.

What you need to know is that I am not lazy. For most people, going out and about is no big deal. But for me – it engages all my senses. I have the unfortunate combo of hypersensitive hearing in one ear and hearing loss in the other. It makes it easy for sounds to overwhelm me. Lights hurt my eyes. Everything hurts. Certain sounds even hurt my ears.

What I want you to know is that some of my interests are childish, despite being 28 years old. It doesn’t mean I’m childish, it merely means that this is something that comforts me in a scary world. Yes, I’m 28 with no kids and can sing a lot of the songs from Daniel Tiger’s Neighborhood and countless Sesame Street jingles. What of it?

What I so badly need you to know is I’m not flaky. I’m not lazy. I’m not unreliable. If you knew me, you’d know I’m loyal, almost to a fault. Ask my best friend about the impound lot adventure from hell. If you need me, you bet your ass I will be at your side. But sometimes, even often, I cannot function. It doesn’t mean I don’t love you. It doesn’t mean you aren’t important. It does mean that my body just sucks and sometimes decides to go on strike or stage a mutiny. Or both, I guess.

What I need you to know, with all my heart, is how much it hurts me when you judge me. When you cast me the side eye for not being disabled enough. When you look at me funny for using the motorized cart at Target. When you judge me and my friends when we park in the handicap spots at Noodles & Company. I wish with all that I am that it wasn’t like this. I wish with all that I am that it was different. But it’s not.

I need you to know so that you can be my friend and that I can be your friend.

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To go back to where I was would just be wrong

I’ve come a long way from where I used to be. I have changed a lot from the person I once was. And I never want to be who I was again. So many people I know lament the past, and it’s something that’s hard for me to understand. Perhaps because I’ve always been chronically ill. Perhaps because I’m an abuse survivor. Perhaps because I no longer self injure and my eating disorder is in recovery?

I don’t want to go back to where I was. Wearing long sleeves when I didn’t want to to hide the scars. Though now because I’m always cold I still wear long sleeves often, but that’s beside the point. Bargaining with myself in order to eat. It’s not something I want to go back to. I’m living on my own. I’m more confident. More radiant. More independent than I ever thought I’d be. And even though some day, maybe even some day soon, I may have to live into assisted living, I still don’t want to go back to the past.

I mean, sure, I get homesick sometimes. I’m my only family. I have to fend for myself. But I don’t want to go back to Ohio to live. Minnesota is my home now. I can’t even go back to a time I was healthy, because even though I’m sicker now than I ever was as a child, I’ve never truly known healthy.

But I know that I can’t live life in the past. I know that I can’t live life with what ifs. I know that I have to keep going, keep going, keep going. And I know that it will be worth it all.

 

Oh, I’m pressing on
All my distress is going, going, gone
Oh, I’m pressing on, pressing on
And I won’t sit back and take this anymore
‘Cause I’m done that, I’ve got foot out the door
And to go back to where I was would just be wrong,
I’m pressing on

Pressing On – Relient K

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Fear & Stuff

Something that is hard to admit is how scared I am. Something that is hard to own up to is how terrified I am. Of how scared I am that I will always be sick. That I will never be healthy.

Many of you know I’ve been fighting to get my food stamps back. To get my PCA. My homemaker. My nurse. I need these things. I am slowly falling apart. While I hope and pray to make another trip overseas when I’m 30, I don’t know if my health will hold. I don’t know if I’ll be in assisted living by then. I don’t know if I’ll still be walking.

I’ve had to switch from my crutches to my walker so I’m more stable. In some ways, this has given me more freedom. In others, it’s a struggle because it’s an old clunky one.

I’m tired of fighting. My anxiety is sky high and I can’t make my phone calls. I try and I try to send emails but when they go unanswered, when they seem like they are just being shot into nowhere, I get discouraged.

When I get the mail and get nothing but bills or letters yelling at me for stuff I didn’t do yet again, I get scared.

When I’m not answering my phone because I can’t handle it, I’m worried (note: these aren’t my case workers calling. I can’t get a hold of them).

I can barely wash my hair these days. Clean myself. I struggle to cook food. I am in need of services that I am not getting. Do you know how scary that is? Do you know how much it sucks? Do you know how it feels to be so hopeless and empty, and not get what you need to LIVE?

I’m fucking sick of people telling me they know how I feel.

I’m fucking sick of wanting to clamp my hands over my ears and melt down in the middle of the store, because I am too overwhelmed to shop so I have to cut my trip short because I have no help getting to and from the store.

I am sick of trying to do it all on my own. Because I’m supposed to have help. Because I’m not supposed to have to. And yet, time and time again, I fall through the cracks in the system and no one gives a damn.

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When your disability is a bad attitude

Image is of me swinging on my churches a few Christmases ago. I am wearing a camp shirt and sheep pajama pants. I have put Christmas lights my crutches.

 

For the most part, I am a bubbly happy-go-lucky person. Being extremely introverted, on the autism spectrum, and having anxiety (confirmed general, possible social) this sometimes surprises people. If I don’t know you, I’m ever so quiet. If you do know me, you might wonder if I have an off button and if I know how to use it!

For years and years, I’ve been told the only disability in life is a bad attitude. I can have a good attitude all I want, but smiling at Twizzlers will not make the gluten come out of them. I can be my happy-go-lucky self, but it doesn’t mean that there are days where I have crippling pain. I can laugh and love, but it doesn’t mean I’m not depressed.

To say “the only disability in life is a bad attitude” is inspiration porn and it is ableist. You know what? I don’t have to be happy. When people say that people with disabilities should be happy all the time, well, are you, able-bodied person? Do you have days where life gets you down? We all do.  We all have those days where life gets us down.

If I have a bad attitude, don’t call me out for it. If I have a case of the grumps, don’t tell me to smile. If I seem upset, don’t belittle me. Living life with chronic illness is HARD and I shouldn’t have to live up to your arbitrary use of a “good attitude”.

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a bittersweet day

It was the day she looked forward to.

I can imagine her reaction to all the rainbows. She loved rainbows. Tye dye. Bright colours.

Oh, how much she would  have loved to see facebook lit of rainbow.

Oh, how happy she would have been to see that marriage was finally legal. To see love win. To see us finally stepping in the right direction.

I found out about gay marriage and not even a full hour later, I found out that Beth was dead.

I found out the friend who loved Peeps and Rainbow and Tye Dye was gone.

The friend who I could say “hippos” and knew exactly what I meant.

The friend who we could assess each other’s moods in Princess Bride and RENT quotes.

The friend who I could text with random shit.

The one who I could blow through thousands of texts in a month. Gone

The one who shared my love for Muppets and Sesame Street and Doctor Who. The one who finally convinced me to watch Buffy and Firefly.

The one who would stay up with me and chat with me in the hospital.

She kept me company when I was sick.
I kept her company  when she was sick.
We kept each other company when we were both sick.

She could read me like a book.

We both supported each other.
For our mental health.
For cutting toxic people out of our lives.
We were there.

Some days, my only laugh of the day came from the wild and wacky convos from Beth.
And now where will those days come? Who will make me laugh those days?

And right now, I am thousands of miles from home. From Minnesota. Even further, than usual, from Colorado. My friend Stephanie told me that I’m in the best place I could be right now – that I’m in Australia and whatnot. That I’m surrounded by people I love and who love me, vs being locked in my apartment alone. But it doesn’t make this any easier.

Love won.
But I lost a member of my family of choice.
What kind of fucking victory is that?

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Tell Everybody I’m On My Way

This may come as a HUGE shock to some of you, but I’m a huge Disney fan. I know, all of y’all are picking yourself up off the floor.
Tell everybody I’m on my way
And I’m loving every step I take
With the sun beating down yes
I’m on my way
And I can’t keep this smile off my face

I’m on my way. On my way to my new life – no longer hiding who I am. Living out as someone with an ASD, a demisexual, no longer hiding who I am. I’m loving each step (er, each roll some days?) I take because I no longer hide who I am. Living out.  Showing who I am. Living as myself and not as someone else.

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Rare Disease Day 2015

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It’s rare disease day. It’s a weird day – it’s not really one I celebrate, but one that needs mention, I think.

I suffer from many rare diseases. Too many to mention. I’m in the process of getting more diagnosed. My body is fighting a war against itself. If you looked at me, if you just glanced at me, you’d have no idea. You’d have no idea that my body is not capable of keeping itself healthy. It’s not capable of protecting itself.

That I suffer from heart problems, lung problems, neurological problems, vision problems… it adds up. It takes a toll. I’ve had doctors literally throw their arms in the air and say they can’t help me. That they don’t know what’s wrong with me, just that I’m sick. Just that I’m broken. Just that all we can do is try and treat the symptoms, and pray that it works.

It becomes medication roulette. Add in that on top of all this, I have mental health issues. It feels like everything is collapsing. That I’m nothing more than a pile of disorders, a pile of symptoms.

I don’t feel it helpful to list out all my disorders. I don’t want to look like someone who is just another disorder. But I do want to bring awareness to the feelings. To the pain. To the emotions.

It’s so hard when I watch people in my life get quick diagnosis. When I watch people find out what all is wrong with them. While I am trapped in limbo. I’d rather know I had a disease with no cure than to be told “we don’t know what’s wrong with you, sorry.” I have many diseases with no cure, but that’s not all. They know there’s more wrong. They just don’t know what.

Being sent from doctor to doctor sucks. I’m on medical leave from college. I am drowning in debt for a degree I’ll never get. I get told I’m lucky to be able to spend my days sleeping, on the internet, playing video games, and watching TV. But I would trade nearly anything not to have this life. There are days when I’m too sick to sleep, too sick to play games, too sick to watch TV. And no one knows why.

I don’t want a cure, per se. I just want to be able to have a fulfilling life. to be able to live my life to the fullest extent possible. But right now, it’s not possible. Right now, my life is a mess of appointments, of tests, of procedures. And it doesn’t show any sign of getting better. It doesn’t show any sign of not being improved.

It’s fucking HARD. And on top of it all, I get well meaning people who tell me that I’m an inspiration. Who tell me they could never do what I do. You know what? I can’t do what I do. But I have to. There is literally no other choice but to carry on in the best way possible.

I get well meaning people who tell me that I’m SUCH an inspiration for doing every day tasks like getting a frock-fracking Dr. Pepper (yes, it actually happened). You wouldn’t say that to someone who is able bodied, so stop.

I get well-meaning people and you can mean well all you want, but it doesn’t make it right. I get told that I’m so lucky to not have to work when I would love to work. I have hopes and dreams and I will never achieve them. I’ve had to rework my whole life at age 27. When I graduated high school nine years ago, by now I expected to have my master’s degree and a job. A husband. A life. And I don’t even have an associate’s degree.

I feel so empty. So hopeless. I feel like there is no answer, there is no cure. I find myself longing for relief from the pain. To not have to take over two dozen medications daily to JUST be able to function. And to have days where I can’t even function because I’m too sick to keep down said medications.

It isn’t a life I would wish on anyone. At first glance, I look normal. When I have my crutches, which is most of the time, you may think that I just have a walking impediment. But it’s so much more. My life is so much more.

I long for answers…knowing is better than not knowing. I’m sick of being referred from specialist to specialist, just to be told that once again, they don’t know.

It’s so tiring. It’s so overwhelming.

But this is my life. This is it.

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that’s where she lies, broken inside

I tear my heart open, I sew myself shut
My weakness is that I care too much
And my scars remind me that the past is real
I tear my heart open, just to feel 

To say things have been bad lately is an understand. A vast understatement. I am completely trapped by depression. Anxiety. My doctor had me do that PHQ-9 doohickey and my score landed in the severe category, vs the moderate it was before. Things are going poorly.

Everything is falling to shambles. I have so much that needs to be done. Cleaning. Phone calls. Emails. Important grown up stuff but it all falls to the wayside. The physical pain, the emotional pain, everything is too much. Everything hits too hard. I don’t even feel like myself anymore.

And I’m on the verge of failing.
The verge of falling apart.

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And I find it kind of funny, I find it kind of sad

It’s been hard lately. That would be an understatement. A really, really big understatement.

My depression has been crippling lately. You see, I have to choose between the meds that make my pain just a bit better, just a bit more bearable, or the meds that help my depression. I cannot have both. So, I can either have the Luvox and lift my depression or I can have the Zanaflex and help my pain. Both? Nope. The side effect was terrifying – I couldn’t even walk across the room to feed my cat without collapsing.

My heart is a mess. That might be an understatement – “disgusting” might be a bit better. But I don’t have the energy to clean it. I don’t have the PCA yet. I don’t have the homemaker yet. I don’t have the help I so badly need yet. They’re “working on it”.

But it doesn’t help my depression to live in someplace like this. It doesn’t help my depression to know that I’m likely moving so. It doesn’t help my depression to know that things might get better, or they might get worse. I’m in limbo, and I don’t like it one bit.

And so, I sit here. “I find it kind of funny, I find it kind of sad, the dreams in which I’m dying are the best I’ve ever had.” Do I want to die? No. But at times I just want a break from this. To not have all this pain – both physical and mental. To just… be free, I guess.