Tuesday, December 20, 2016

Backdate: Autism Spectrum Disorder Diagnosis

"Asperger," says my psychologist. "The DSM-5 rolled it into ASD (autism spectrum disorder), but I still say Asperger -- and so does pretty much everyone who has been diagnosed."
Welcome to the named parts of my brain, Asperger syndrome. Forward moving times, I am on you!

Friday, December 16, 2016

Backdate: Disability Is A Social Construct

Person comes up to me and Henry near a parking garage elevator room.
Person: You trying to get in?
Me: I'm taking a picture of how the only button that opens this door is on the inside.
Person: Wow, it is! That's retarded.

So close all around.

Friday, November 25, 2016

Backdate: "Yes I Can, If..."

This is a realistic response to the slickly produced ad for the Paralympics that aired earlier this year. The ad proclaimed "there's no such thing as can't", which is woefully incorrect due in part to existing infrastructure. It also leads able bodied people to believe that anyone can "overcome" disability, which is not the case. I did enjoy that ad for the most part, but I enjoy this one better.

Monday, November 21, 2016

Backdate: Ableism In Activism

Sometimes, lending one's voice is literally all someone with disabilities can do. It can be disheartening to hear reinforced messages about how you're not doing/being enough or only doing the bare minimum when you're trying your hardest to show up for the larger community. Just because you can't see how we're contributing doesn't mean it isn't happening or isn't valuable. We are not a lazy demographic.
Right now, I'm not strong enough to march or attend rallies or sit-ins. I am currently in a place to be able to make modest donations, but this is certainly not always the case. The internet gives my disabled voice a potentially powerful platform that it wouldn't have otherwise. I'm going to use it when it's a viable option.

Tuesday, November 15, 2016

Backdate: Disabled in Trump's America

Speaking for myself. The incoming state of all branches of federal government is poised to take a crowbar to my health insurance and prescription coverage, my only source of income, my reproductive rights, my right to love and build a life with whomever I want, my right to exist as myself. My life and the lives of others hang needlessly in the balance for myriad reasons. They always do. This is not whining or being dramatic. It's my very real, actually happening life. You're damn right I take issue with that.
The way this brain communicates used to work well enough on social media, but not so much right now. If you feel like saying "Well, actually" or anything related to bootstraps, keep it to yourself. You don't know shit about it.

Thursday, November 10, 2016

Backdate: Autism Testing

Effective communication is an obsession of mine and the response to this election demands it. For this reason, I'll share something that I wasn't going to talk about until I could officially say for certain -- "this is the thing".
I'm in the middle of testing to find my place on or near the autism spectrum. I've honed my skills over time and, when asked, most people say they can't tell that communication is often incredibly taxing and frustrating for me.
I am not looking for opinions or unhelpful comments right now. Please use patience and meet me where I am when discussing the grim turn our country has taken or anything else. I will continue to strive to do the same in return.

Friday, October 7, 2016

Mental Illness "Support"

- "Vellum and Vinyl"

Like many humans, I strive to be made of quality, non-terrible materials. Unfortunately, this is difficult to prove when one's brain is brined in a slurry of ill health and everybody knows it. When everybody knows it, people take it for granted and often demand that you prove yourself (or you become ignored, which can also hurt). The brain situation you can only do so much about -- try as you might -- can and will be used against you, sometimes to further someone else's personal agenda. This is especially heartbreaking when it comes from someone who claims to support you.

So, dear people striving to be all you can be while also battling mental illness: you are good. You deserve human decency and you deserve nice things.

Thursday, September 8, 2016

Audio Hallucinations Part II

Yesterday, Henry and I went to see a movie. Instead of walking into the usual blaring, in your face ads for department stores, TV shows, and Coca-Cola, we found ourselves in a dimly lit, scarcely populated theater surrounded on all sides by whispering ambient cocktail party noise. This new thing might not seem like it deserves more than a passing acknowledgment, but if you experience auditory hallucinations like I do, it could make your blood run cold.
One of my regular hallucinations is literally "ambient cocktail party", so this experience was a major event. I'm glad I was with someone I trust and not alone, so I could ask if what I was hearing was actually there or not and then have a solid anchor until it passed.
I posted this in the blog about four years ago:http://punchpillspie.blogspot.com/…/auditory-hallucinations…
"If you've ever truly wondered what auditory hallucinations sound like, this is a fairly accurate (in my experience) representation. Be forewarned, this is potentially unsettling to listen to and the audio kicks right in."
You should definitely use headphones when listening.

Friday, May 20, 2016

On Mental Illness And Creativity

My comments are based only on my personal experience. I'm glad this issue is beginning to be addressed.

This article shows a side of mental health treatment that isn't commonly discussed. I used to follow the same "wisdom" that treating mental illness would definitely destroy my creativity. The pain of continuously, actively trying to keep my mental Pandora's box sealed is what actually crippled my creativity. It wasn't until the decades-long cycle of mental anguish became utterly, dangerously bad that I realized, if I wanted to live without the surely unnecessary type and amount of pain I was enduring, I needed to seek help.* At that point, anything seemed better than suffering for art I couldn't make under the weight and skittering of my myriad brain goblins.

What an immense relief it was to learn what was going on (Bipolar II, PTSD, general anxiety, social anxiety, and ADHD-I to start) and that there are ways to treat it all. It's something that needs regular tweaking and is never going to be perfect, but my treatments work for me more than they don't and they literally allow me access to my creativity. Sure, I've made art about things I wouldn't personally know about unless I experienced mental illness myself. And sometimes, I have to do a cost/benefit analysis over whether or not taking a super sedating medication is worth having everything in my brain go damp for awhile. If I start taking something and it doesn't work for me, I can stop taking it. I am in charge of my own care. Treatment for mental illness is not a trap.

*Not everyone is always capable of seeking help. I was lucky I managed to do it then. It was really, really, really hard.

Saturday, April 2, 2016

Happy 5th Anniversary, "Near Syncope"!

Me having a conversation with Molly and Jen in my kitchen on April 2, 2011

For the new people, "syncope" is fainting. I have episodes of "near syncope", wherein I black out for a split second, fall over, and regain consciousness just in time to take a hard seat and/or hit my head on the ground. 

I lost the last job I had due to the initial onset. It happens much more infrequently these days (woo!) and I can better tell when it could be a danger, but I'm still unable to work (boo!). There is still no official reason why this happens, because who needs answers? I know it's the combination of extreme mental and physical factors, so I steer the care I get in that direction. It's not a simple task and slow going, but it's going.

Thanks for sitting on the floor cracking jokes with me after the first episode, bestos! I'm grateful that you happened to be with me when this whole business began and that you're still around today.

Tuesday, March 1, 2016

20,000+ Page Views!

It's the little things.

Thank you for continuing to check into my corner of the internet! Confetti and red velvet cupcakes have been had.

Monday, February 29, 2016

Rare Disease Day 2016

Today is Rare Disease Day!

A few basics:

1. A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

2. There are more than 6,800 rare diseases. Altogether, rare diseases affect an estimated 25 million to 30 million Americans.

3. The exact cause for many rare diseases remains unknown. They are known to be largely genetic and rounded out by environmental factors.

4. There has been some progress, but there are no treatments for the vast majority of rare diseases.

5. An up-to-date list of rare diseases can be found here.

There are two rare diseases in particular that have affected me most personally.

I've written about myasthenia gravis before. It's an autoimmune neuromuscular disorder that affects voluntary muscles. Common symptoms can include a drooping eyelid, blurred or double vision, slurred speech, difficulty chewing or swallowing, weakness in the arms and legs, chronic muscle fatigue, and difficulty breathing. There are a few treatments for MG, including surgery and medications (which is what my personal plan has looked like), but no cure. When I was diagnosed, I was 12 and had recently started both puberty and jr. high. Good thing I was already well versed in being an outsider! MG was the first of my countless future diagnoses and will always be dear to my heart.

Speaking of dear to my heart -- the rare disease that devastated my life is Tetralogy of Fallot. Tetralogy of Fallot (teh-TRAHL-ah-jee of fah-LOH) is a set of four congenital heart defects that occurs in 5 of 10,000 babies. There are ways to manage symptoms, but the only way to repair these defects is through open heart surgery. The success rate for this surgery is pretty high, though I can't seem to find a statistic that I understand to prove it. Anyway, I know this because my daughter, Maya, was one of the few who did not survive it in 2002. It was apparently her best hope and has been a success for other "tet" babies I've known.

So! Now that you know there are 25 to 30 million Americans with at least one rare disease, it's safe to say you know at least one of those people personally. 9 Ways to Support People Living with Rare Diseases and Disorders is a good place to start reading.*

*This blog is sooo close to passing 20,000 views. If it does, on this Rare Disease Leap Day, I will imagine Misha Collins tossing confetti over my head and a red velvet cupcake appearing in front of me.

Wednesday, February 17, 2016

Bye for now, Murky Depths!

Since things had been kinda dark for awhile, I went on a short retreat all by myself last week (and somehow managed to not accidentally maim or kill myself in one facepalm-y way or another). It was a massively necessary and fruitful trip. I was able to get a better handle on what my life is all about within the parameters I've been given, which caused my "resting bitch face" to be interrupted by more smiling than usual and my mania to surge all the way up to "Kool-Aid Man". 

In addition to communing with nature, I did as much writing as I could type and have since been able to hold a pen well enough to do crosswords. My focus has been better the past few days and I feel less stupid since it turns out I'm still capable of completing that kind of puzzle.

Of course, I got so wrapped up in my successes of the past week that I immediately forgot how weak my entire body is right now, did too many things in a row, and now have persistent double vision and full body complaints from "getting things done" and arranging myself into optimum crossword doing position. Classic Melissa. Back to eyepatch training and needing a shower spotter. (No, I will probably never learn.)