A Birthday and Christmas Post for My Sister

sisters

 

28 years ago, I got the best Christmas present ever.

My sister and closest friend.

This isn’t going to be a particularly long post, nor am I going to write story after story of memories that I have–and trust me, there are plenty–but I will write this:

Happy birthday, I miss you, I love you, and Merry Christmas!!! YOU ARE THE BEST SEESTOR IN THE WHOLE WORLD-D-D-D-D-D!

Love,

Your sister who doesn’t let old jokes go. And never will.

The curse of being a creative

Oooh, it’s another post time.

I promise, it won’t be too depressing. This is just a quick word-vomit thing to get this horrible, repeating thought out of my head.

Sometimes, I feel like I got cursed with creativity.

Allow me to explain.

Being creative is a valued trait. In certain contexts. Some of our highest-paid professionals in America are creatives–singers, actors, directors, etc.

Yet, go to school to be a film maker, a graphic artist, or a creative writer, and people are going to laugh when you struggle to get a job and say, “Well, you should have done something more practical.”

So you look at other options. The reality of the situation is that you probably won’t be the next Veronica Roth. E.L. James. Jennifer Lawrence. Or whoever.

You begin to realize that you really have nothing else to fall back on. You’re good at one thing: making things out of nothing. You’re good at getting lost in your own head, feeling at home among the clouds, your eyes staring off into nothing, as your brain paints a picture that you need to get out somehow–whether it’s through writing, drawing, singing, acting, or literally painting.

And when you’re out of school, you discover..

no one wants to pay you for that shit.

So you end up going off on your own, looking for ways to make your dream happen. We’re that generation, anyway. Your job doesn’t exist? Fucking make it up. Make your life happen on your own if you can’t find it on monster.com (or LinkedIn, I guess, whatever people are clamoring all over these days). You control your destiny, right?

God, no.

It’s such fucking hard work. You know what sucks? Knowing that you’re really going to struggle at the start. knowing that you’ll have to change your strategy time and again to pin down the formula that really, truly work–it’s a business, after all.

You want to sell your art online? You can start up a store, but good luck marketing your stuff and having it take off immediately. You can show people your portfolio, but they’ll end up asking you to make a logo for free or else they’ll “ask their boss’s kid–he’s good with that kind of stuff.”

You wanna write? Have fun begging people for reviews and trying to get your book to climb the search result ranks on Amazon. Pour your heart and soul into these words to have someone look at the cover and shrug and say, “next.” or worse–submit to a traditional publisher and get used to being rejected over and over.

You want to compose? Are you going to be stuck trying to sell little jingles for a piddly little fee while trying to write an album that you only hope will put food on your table?–it’s not like you’re asking to be a superstar, right?

Want to be in a film? Ha. Work for days on end for no money, understanding that the people who are making the film probably can’t afford to even buy water for everyone on the set, let alone offering you a fair wage. But hey, it’ll look good in your portfolio, right? Maybe this role will be your break out role.

It seems that no matter which creative route you take, if you’re not already connected, it’s a rough road to travel.

I’m not saying it’s not worth it. These jobs are laborious, tedious, and slow-moving for most people. But they’re done out of love, and that’s why we keep doing them.

What I’m sick of seeing is people who shit all over art.

A blogger I used to follow has made a platform for herself by being pretty. Literally all she does is take selfies and make her hair and face into cool art projects. I loved her style and reading her funny, weird posts. Then she started getting preachy about other people’s bodies. Then about their lives and choices. Then about the recent celebrity photo leaks.

I cut her out of my feed like a tumor.

A makeup artist I follow drew some pictures and shared them with her fans. people told her to stick to “looking pretty”. For fuck’s sake, she was happy and wanted to share it, and thousands of people tore her down for daring to do so.

I can’t read those comments anymore. Her feed constantly rips on her appearance, anyway.

My female friends stream their games online. They get torn apart for their appearance

sometimes–because they happen to be women just sharing something they love with fans. Whether it’s a comment about their bodies or someone just being an asshole for no good reason, it must get tiring to be the target of such negativity. It wears you down.

I don’t watch streams for that reason. Can’t stand the comments.

So I sit here, thinking of the talents that I have. They are all in the creative realm. I will never go back to school to get a STEM degree. I respect people who do this, but I don’t belong there with them. I will never go into something lucrative–I’ll never own a huge business. That’s okay, too.

But I feel discouraged because creativity is all I have.

Really. It’s all I have.

And I don’t understand the

Creativity is a blessing and a curse.

My Life with Bipolar Disorder and Depression

When the phone rang that night, I was asleep. It was probably 1 am or so, and my 10-year-old body wasn’t used to being pulled from slumber at such an unreasonable hour. I closed my eyes and willed myself to slip into unconsciousness again. The voice in the back of my head told me I shouldn’t sleep; that I should get up and find my sister and whichever parent had kept watch with us that night, and listen to what they had to tell me. But I couldn’t. I couldn’t do it because I didn’t want to hear what they were going to say. If I went back to sleep, it’d be a dream; a terrible, awful, nightmare. The phone call would be a figment of my imagination.

I woke up again, when it was light outside, to my mother’s sobbing tearing through the walls. Sharp sobs. Unearthly wails. I can’t describe the grief and the overwhelming anger and helplessness that I could hear in her voice. She was in the bathroom with the door shut, but nothing was hidden from me and my seven-year-old sister. We sat up in our hideaway couch bed and I saw my father sitting at the little table across the room from me, with tears in his eyes, but his demeanor calm.

I knew the words that were coming next. The phone call hadn’t been a dream, and my willful ignorance had been pointless. I started crying. My sister got scared and started crying, too, not really understanding what was going on.

“Sara went to be with your sister last night.”

Angry sobs. Uncontrollable tears. Cursing God. Hadn’t I prayed hard enough? Losing Kristin was hell on my parents… and now Sara’s gone, too?

It was three weeks before her fourth birthday.

head-is-bad

Image from STYLEGERMS

 

My dance teacher threw up her hands, exasperated.

“Why don’t you even try?” she asked. I was half her height and couldn’t look her in the eyes. We stood in front of a wall-sized mirror, where she scrutinized my form as I practiced a section of my dance routine in a trance-like state.

“I am,” I said. We stared at one another for a moment, our eyes locking in the glass, and then she turned and went to assist one of my classmates. I wanted to leap through the glass like Alice, and escape from the inanity of memorizing a simplistic, boring dance routine. What did it matter, anyway? The only people who cared were my parents. They were the only ones who showed up to watch their kids prance around on a stage like clumsy little mannequins, wearing far too much makeup for their own good and hair sprayed into place like a tiny Texas beauty queen. Who else cared? I couldn’t think of a single person.

But my mom paid for classes. And I had to keep everyone happy.

I forced myself to move again. If you squinted, it looked sort of like dancing.

“We need to talk,” my piano teacher said, looking at me while I let my fingers slump from the keys and into my lap, knowing what was coming. “You haven’t been practicing, and you seem very… sad.”

I refused to make eye contact and just stared at the keys, tears welling up in my eyes as I tried to choke out some kind of answer. Words weren’t coming.

“Is it because of your sister?”

Yes, it is because I have a gaping hole in my life where her little bald head should be. Her adorable, round eyes and her singing and dancing and hilarious jokes. She should have been free of her illness, and don’t you think I am angry that such a sweet little person had to suffer so greatly? I hear her voice when I try to sleep, and my chest hurts so bad that I feel my heart will tear itself apart.

I have her drawings of our family together. It will never be the same. I have a mother who won’t stop crying, a father who gets the brunt of her uncontrollable wrath. A younger sister who is clearly struggling to process death and is doing worse than I am. I pretend I can’t hear the arguing and get angry with myself for being such a failure at everything instead.

“Yes, I’m sorry.”

She understood. She said I had to keep trying. I was trying. I was. Why did everyone think I wasn’t trying? I was reaching for something in the distance, but I never seemed to get any closer. Reaching was all I could do.

 

Or pursuing a writing career. Onion, you are spot on.

Or pursuing a writing career. Onion, you are spot on.

Image from TheOnion.com

“Girls, come in here,” my dad called. My sister and I were in the family room, and he and my mom had been fighting in the bedroom for what seemed like hours. I knew what was coming. We stepped into the room and they looked at us with somber, controlled expressions. I crossed my arms.

“Your mom and I love you two very much…” my dad choked out, then trailed off.

“You’re getting divorced, aren’t you?” I asked. He shook his head.

“We’re just going to try being separated for a while. I’m going to get an apartment and you can come stay with me every other weekend.”

I was so mad I was just numb. When the “conversation” was over, I left, and felt like crying, but it was the anger that was growing more than anything else. I hated my life more and more with each passing day. I didn’t know what normal was anymore.

...

“I think this sounds like you,” my friend said, pointing to the phrase BIPOLAR DISORDER on our worksheet. “You’re like, happy some days, and so sad the next that no one knows what to do around you.” I stared at it, then looked at her. Learning about psychology had apparently made our class into a bunch of 12-year-old mental health professionals. Still, something about all the symptoms made sense. I lagged behind my friends now that we’d started middle school. Boys terrified me. Doing anything physical in front of anyone terrified me. Going to church on Sundays terrified me. I hated everyone and everything, and had thought repeatedly about dying that week to escape from the misery of hormones, schoolwork, depressing home life, and practicing activities that brought me no joy whatsoever.

“Yeah, maybe,” I said, and went back to doodling on my notebook. The more I thought about it, the more I became convinced that maybe there was a name for how I felt. I walked up to the teacher after class and I told her I thought I had it. She looked at me strangely and said, “You should talk to someone about this.”

So I told my mom.

She said I didn’t have it, and demanded I go apologize to the teacher and clarify before they started to think I’m crazy.

I looked at the bottle of painkillers and wondered. If I ate them all, would it stop? I thought of my sister and of my parents. Well, maybe I’d just take a few and see if it helped me be in a dreamworld or something. I took 10 and fell asleep.

I woke up the next morning as usual. I was disappointed.

It continued throughout high school. I could never focus. I hated most things and most places. And most people. I watched my close friends get picked on and plotted revenge against those who would hurt the few I did care for. I was just a girl, though, and the bullies were guys and totally unthreatened by my stature. Go figure. But some people thought I might be crazy, and many definitely found me strange, and that scared them. I began to channel severe rage episodes into art and writing, finding new ways of killing off characters who were quite thinly-veiled representations of the awful bullies in my life. But it was all written off as being a hormonal teenage girl.

On one occasion, I confronted a bully and threatened him, wanting so badly to tear him to shreds mentally and physically for picking on a harmless, shy friend of mine whose only crime was to draw too many anime girls on her notebooks. His mother was friends with my mother, but I didn’t care. I made him feel like the tiny, insecure little prick that he was, and I felt good about my meanness for once. But it was a short-lived victory. I still cried at night, not just because I was sad, but because I was angry. Because I didn’t want to deal with any of it any longer.

When I went home at night, my mom would keep her hawk eyes on me. I could never go anywhere unless she’d planned it about a week in advance. I understood her fears. I enabled them. I told her everything to keep her calm and as happy as she could be. She was petrified of losing another child; how could I be so selfish to be away? Especially when my younger sister, who was on the verge of a very serious transition in her life, was being picked on at school for being eccentric? It was my job to hold it all together. My burden I placed on my own damn shoulders.

 

 

Fucking love Emilie Autumn

 

I didn’t start cutting until I was about twenty. I was slow to arrive at the rodeo, I guess. My boyfriend had been watching so much porn on my computer that it was all buggy and gross, and I was livid about it. I told him how much it hurt me that he wouldn’t touch me, but he wanted the faceless girls on the internet; he apologized to me and he promised he’d stop. He never did. Not once in our nine-year relationship (in which we eventually got married) did he ever tell me the truth about his intentions. He just kept doing it and telling me he wasn’t. I got so good at catching him that I reveled in the fact that I was smarter than he was. But I felt so worthless and ugly after knowing what he did that I would cut myself out of anger. Punishing myself for being… me. For being not good enough. Because how fuckable he found me was apparently the only self-worth I could see inside of myself. I didn’t realize how unhealthy these thoughts were until our marriage fell apart.

He told me he’d been in love with one of my best friends for years when we’d been married for a year and a half–I was 27 at the time, living in a state far away from any of my friends or family. He wouldn’t stop drinking until he was an obnoxious asshole who sneered at people and blamed me for everything wrong in his life. He’d watch porn ON THE TOILET IN THE MORNING and completely ignore me while day drinking at his job that I GOT HIM. I’d started detaching myself from the relationship already, which was not the nicest thing I’ve ever done in my life, but I was mentally and physically exhausted. When he told my poor friend of his true feelings (while smashed, of course), she was floored and didn’t know how to respond. This girl was one of the friends who was picked on in high school–we’d known one another for 13 years–one of the girls I’d wanted to protect.

For months after this, I switched back and forth from uncontrollable anger to severe depression. Body wracked with pain, mind completely blank, heart utterly shattered kind of depression. I went to therapy immediately, but did not see major improvements until I went to a psychiatrist and asked him to please help me by putting me on medication. I was diagnosed with bipolar disorder and chronic clinical depression. I also have body dysmorphic disorder and extreme anxiety when it comes to certain pornographic materials (just about on par with PTSD, but I don’t like saying that because I feel my case doesn’t merit the title. I was sexually assaulted and emotionally abused, but so many people go through so much more than I have and I feel PTSD isn’t the proper term for me–I’ve seen my soldier friends with it and I just can’t bring myself to use that terminology.)

depression_motivational_poster_by_quantuminnovator-d6dwgk8Image by QuantumInnovator on DeviantArt.

 

I’m turning 30 this week. Mental illness has nearly destroyed my life. I once contemplated killing myself when I turned 30 if my life was as miserable as it had been for so long. But before you get all panicky, I’m happy to say that while I’m sad about this milestone and being “behind” my goals, I’m here to stay, and I’m recovering more and more each year.

These stories don’t include the struggles my one surviving sister has; those which my mother has dealt with; my father’s huge emotional and spiritual journey; the impact of an attempted rape (I just can’t write about it in this context) and an (unrelated) unplanned pregnancy; nor does it cover the impact that a building autoimmune disease and undiagnosed genetic syndrome have had on my life. But what I want to say is this:

If you have ever wondered whether mental illness was one of the following:

  • A phase everyone goes through
  • Something someone just needs to “pull themselves out of”
  • Hysterics
  • Something you need to just “get over” or “snap out of”
  • Attention-seeking or selfishness
  • Stupid or unwarranted, given the person’s status
  • Not justified in your eyes (i.e., someone rich or someone very attractive suffers from depression and you think it’s just them being stupid)
  • Something you should be able to get over without the use of pharmaceuticals or therapy
  • Something only for damaged people who are likely to be a threat to themselves or others
  • Something you can discriminate against because those who have it are “crazy”

You’re a moron. Okay, scratch that–you might be naive, but you’ve also got no handle on the reality of mental illness. Someone in your life may be afflicted with an invisible, awful, alienating disease such as clinical depression. As in, right now. When you pretend these things aren’t serious, or when you push away someone who is suffering, you’re doing them a disservice. You may not be a therapist, but you can be the one to reach out your hand and tell them they’re not alone. That you won’t judge them or shun them for asking for help. Many sufferers just need to know that someone cares.

Oh, and never fucking tell a mentally ill person that if they ate a better diet or took some herbal bullshit supplements that they’d cure themselves. That’s not how it works.

 

robin williams headshot

Robin Williams passed away today from apparent suicide at age 63.

 

Visit this site if you’ve had thoughts of ending your life. Cliche, but here it is.

http://www.suicidepreventionlifeline.org/

I wrote this today after reading the discussions surrounding the death and apparent suicide of Robin Williams. Mental illness doesn’t discriminate and it’s a fucking tragedy that it took the life of someone who has touched so many hearts with his successful career. My story is just one of many stories that could and should be told. I wanted to share just bits and pieces of my struggle so that people could see that it’s very real. It’s very dangerous. And I’m here today because of the support of friends and family, and because of medication and therapy.

If you need help, I’m here to tell you you’re not alone. Fight this shit. Fight it as hard as you can. And change the discussion surrounding mental illness. We need to remove the stigma and push for more affordable, accessible care.

If you like, you can watch a tribute video I made for my sisters below, and you can read the story I wrote about Sara’s death here.

 

 

You can also read my writing here under my pen name Deina Furth.

Art continues to help me and heal me in ways I can’t anticipate. I appreciate your support.❤

hang-in-there

Tips on successfully trolling a feminist

HATAS GUNNA HATE

Go Make Me a Sandwich

But first, some administrativa[1]

I’m pleased to say that I’ve reached a milestone. 50 patrons are now supporting this blog through my Patreon!

patrons WOOHOO!

Since re-starting the blog after its somewhat lengthy hiatus, I’ve written 25 paid posts (including this one) covering a huge range of topics, from silly to serious and everything in between. So thanks to all of you for your continued support.

On to business.

I got one of my best troll comments yet here on the blog the other day. I won’t gratify the troll by posting the entirety of the comment, but it did call me an “autistic entitled skank” and said that I’d given him cancer. I was so delighted that the first thing I did (after deleting it from the post, naturally) was email it to a friend, who shared a good laugh with me.

misandry rays I HAVE THEM.

Which got me thinking…

View original post 1,121 more words

Unravelled

Weaving lies from lips that never parted, never breathed
for her,
her loom twists syllable after syllable of mine
into a tumbling skein of sensical syntax
that graces dozens of ears that do not hear.

“But she, she is subhuman!
She’s lost her essence to the world, perhaps,
or to a cesspool of her own morose doings.
She refuses to learn that it is she
who does this to herself, and no one else.”

Were she to will it so,
my days would stretch out like threadbare cloths
over a frame that tightens until my mind unravels,
and there would be needles pricking,
leaving scars,
darkening my eyes as well as my heart
in an indelible pattern,
marking me as

ugly,
scarred,
insane,
worthless.

Yes, were she to will it so,
I would have scarlet letter of shame
stitched into my skin,
so that all who saw me would know
I was his,
but I am no longer,
because I am damaged,
and I am unmendable.

But she can’t will it so.

So she weaves lies from the words
of a woman she has never met
will never know
and will never understand,
and her cries are fed to the night
while all other ears have moved toward the dawn.

A Battle Not Easily Won: Part 4

house it's not lupus

OR IS IT, DR. HOUSE? IS IT??

Part 4: I go to mayo clinic and see a crapton of doctors. I have a lot of tests done. But i get answers and now I’m going to share those with you! hurrayyyy!

Off to Rochester!

Fed up, I made an appointment with the world-renowned Mayo Clinic in Rochester, Minnesota. I now lived 5 hours away from it, and my sisters were treated there. I hadn’t been there since the youngest died. It was scary, actually, to consider going back to where she had her transplant. But I made the appointment and prepared.

Going to Mayo Clinic is like… going to a Godly hospital. The doctors there give a shit about you. They take their time. They listen. They run appropriate tests. It’s also like going to a convention, but instead of panels, it’s going to tests and appointments. I met with a doctor who scheduled me to see a rheumatologist, an endocrinologist, and a gastroenterologist. They were still concerned that I possibly had Celiac but no positive antibodies. And they, like the other rheumatologist, were more concerned about my bones than anything else, but I didn’t really care. I was going to see ALL THE DOCTORS!

What the tests said:

  • Yep, you got some tissue destruction going on. Your ANA w/ reflex is still positive.
  • Wow, your creatinine (associated with kidney function, aka lupus fun times) has steadily gone up and is on the verge of being too high. But it’s not, so our systems aren’t going to flag it.
  • Your vitamin D is okay–should be a bit higher, but that’s okay! It’s normal now.
  • Your kidneys aren’t pushing out TOO much calcium. So we don’t know why you’re
  • Your thyroid is a bit slow, but as it’s been tested 2 other times and was normal, we’re going to ignore that.
  • Your bone density is still crap.
  • You have minor scoliosis in your neck, upper back, and lower back. Also, you have arthritis in your lower back. Your lungs and heart look pretty good.
  • Your joints are not swollen. They are enlarged somewhat, but not full of fluid, so it’s probably not RA.
  • Your fingers look a-ok under a microscope. You do not have enough criteria to diagnose scleroderma at this time, but there’s some crap going on that we must monitor. You could develop it in the future.
  • Your endoscopy (boy was that a fun time–I hallucinated that a lady had two heads) says your stomach and intestines are fine. You do not have Celiac disease.

And then I got the diagnosis that I simply had IBS. Okay, well that’s fine. I kinda knew that.

But here’s where it gets good.

When I was talking to the rheumatologist, he had me hold my arms out completely straight. He tapped my elbows and went,

“Huh, looks like you have a bit of Ehler’s-Danlos Syndrome.”

Wat. Is that.

It’s a genetic connective tissue disorder where your joints, connective tissue, and blood vessels are hypermobile. Now, there are a lot of different manifestations of this disorder. But it ranges in severity from “this is a pain in the ass–literally” to “your blood vessels could literally burst and kill you at any point in your life.”

COOL. ANOTHER THING.

So he did more hypermobility tests and pinched my skin.

“You have VERY soft and elastic skin. This is a very prominent symptom of EDS.”

So that other idiot rheumy who commented on it didn’t even associate it with the disorder? God, he was a waste of money.

So I made an appointment with a genetic counselor to talk more about it. That guy totally did not think I had it at first.

But the more we talked the more he said, wow, you really have a lot of minor symptoms. I’ve had joint dislocations, My vision frequently blacks out when standing up (postural orthostatic tachycardia syndrome–where your blood doesn’t flow right and your heart races when standing up.. fun acronym, too: POTS) One of the most unexplained and bizarre symptoms is the scoliosis and… drum roll…

OSTEOPOROSIS DING DING DING

So all in all, I have EDS and it caused my osteopenia/osteoporosis. IBS is a part of it. Endometriosis is extremely common with it. Cracking joints and pain is another big part of it.

My other diagnosis was undifferentiated connective tissue disease. I was put on prednisone to help with the pain. This could be the early stages of Lupus, Sjogren’s, or Scleroderma. I must be monitored forevs. I also need to have an echocardiogram to see if I have a mitral valve prolapse, which is common among EDS patients. I have some symptoms of the vascular type of EDS (easy bruising, prolonged bleeding, easy scarring) but since no one in the family has up and died randomly from an aneurysm, it’s unlikely that I have it.

For more information on EDS, go here: Ehler’s-Danlos Network

But I have answers. I have a genetic disorder and a disease that affect the same damn thing (connective tissue) but I have answers.