Wednesday, December 3, 2014

Reveletory Hypothesis

Some things suddenly make noise in your mind when you're folding laundry. You ask if anyone else hears the noise and receive a chorus of "We've been hearing you emit that noise for years." Oh.

See, I didn't know until recently that I'm not particularly emotionally supportive. You may not notice this unless you've spent a lot of in-person one-on-one conversation time with me, which few people honestly have. The off-hand question I asked about this mental itch was confirmed by those who would know, but love me anyway. Upon reflection, I have to agree. Beyond a hug and a "there there", I usually have no real idea what to do with other people's word/emotion/facial expression combos or how to arrange my own face and voice so they know I care (and without making them feel worse!). I've unconsciously done a lot of work on mastering this sort of thing, but it turns out I still guess wrong A LOT.

Often, I either empathize all the way and freeze because it overwhelms me completely, or I don't notice/understand what's happening at all and end up being inadvertently cold or rude. I've developed a (not fool-proof at all) system over the years, so I'm not always a complete social wreck and can scrape by. Being "on" all the time is super exhausting, which is a big reason I hardly leave the house anymore. Online communication is infinitely easier (although it's difficult for me to not use universal emoticons for everything). Online, I have all the time in the world to craft my words. In person, my foot lives in my mouth.

So! The noisy thing that includes, but is not limited to, the social angst detailed above is that I think there is a place for me on the autism spectrum. I think the missing piece in my unwieldy and debilitating labyrinth of life struggles has been revealed at long last. Light bulbs exploded and all the bells that ever existed rang out at full volume. I heard my internal circuits crackle and a scaffolding rose up like a pop-up book under the left hemisphere of my brain. A banner unfurled: "EVERYTHING MAKES SENSE NOW. HOW ABOUT THAT?". My understanding of who I am and what autism is has been completely rearranged.

My hypothesis is that I started passing out almost four years ago because of finally being beyond overwhelmed due to autism. It's the thing that keeps getting missed. I've been doing as much research as I can. I brought it up with my therapist, who said I was not her first adult client to mention this and gave me even more resources. Everything I've read about being a woman who was diagnosed with Asperger syndrome as an adult, every silly (?) internet quiz I've sweated through, has been like peering into an eerie, I'm-going-to-need-to-see-that-37-years-worth-of-footage-whoever-you-are mirror. (I realize that the term "Asperger" didn't make it into the DSM-V, but I need to use it for the sake of reference.) I'm not big on self-diagnosis and I do plan to follow up with someone who has that power. Apparently, this is very difficult to make happen when you're an adult, though. As I read more, it seems it's not entirely necessary, either.

I've written out many pages about all of this, but right now I'll keep to shining a brief light on why autism in girls gets overlooked (particularly 30 years ago when it would have been initially relevant for me).

"The fact that girls with undiagnosed autism are painstakingly copying some behaviour is not picked up and therefore any social and communication problems they may be having are also overlooked. This sort of mimicking and repressing their autistic behaviour is exhausting, perhaps resulting in the high statistics of women with mental health problems.” (Dale Yaull-Smith, 2008)

Ding ding ding! I learned early on that a large part of social survival meant repressing myself at all times. Unless I'm alone at home or in a pre-vetted controlled environment, I do not feel "free to be me". I strive to be as authentic a person as I can possibly be, but I do feel like an alien or a character in a play/dream every single day. It's incredibly taxing.

"Men! With your...sales!" (BtVS, S4:E22 "Restless")
Sounds legit. (BtVS, S4:E22 "Restless")
My bingo card is nearly complete!

I never, ever feel like I truly know what's going on in any given situation. People are often confused by what I'm saying and why my facial expression and/or vocal tone don't seem to match. I say the uncomfortably wrong thing a lot. I often don't know when or when not to talk and the volume of my voice is not well-moderated. Throughout my life, peers and authority figures alike have wondered aloud how someone so "gifted" could be such a woeful spaz all the time.

Even if the official diagnosis route dries up, it doesn't change who I am or what coping mechanisms I might find helpful. I already have a freshly built framework in my brain and am moving forward with that. I feel confident that if I can get this situation under control, my brain will stop trying to shut down so much and I can finally get back to a life that includes having a job and a view outside of my bedroom! Super jazzed face and spirit!

Wednesday, November 12, 2014

Re-post: A.V. Club - "American Horror Story’s Mat Fraser won’t star in your 'inspiration porn'"

I once sat on a panel next to Mat Fraser and soaked in every brilliant thing he had to say about disability rights and advocacy. This article is spot on!

"If people feel inspired by me, then go for it, guys. I’m happy to help, but I’m not inspiring just because I’m disabled and want equality. I should be called “normal” for that—and you guys should want the same thing, too."

Tuesday, October 28, 2014

Swan Song

I've been living in a blanket fort for most of the past two months. I'm hibernating, nursing a neck strain and a cold that have beyond overstayed their welcome, and trying to figure out what Life Plan B is. No matter how wonderful, difficult, or tragic my life-shaping events have been, the broad goal has always been "My life will have meaning as long as I am making art and am not under-stimulated". I aim to thrive above surviving. It's a luxury I rarely experience, but I'm resourceful and stubborn about striving to achieve it.

The life I had to leave behind earlier this year is the one I've lived my entire adult life. Over almost 18 years, I built and attempted to maintain an existence filled with non-boring, often collaborative art making that incorporated my disability. For the last few years, key parts of my body that make these things happen have been cooperating in an incredibly inconsistent manner. Delicately planning a deliverable act, performing anything live, writing with regularity, etc. - everything I do is adversely affected. The sudden onset of a range of ruinous symptoms has been inconvenient, disappointing, and dangerous. It's like standing thigh high in quicksand and trying to push my skull through a steel wall while artistic plans, ideas, and commitments zoom around until they fizzle and settle weakly underfoot.

This brings me to the point of accepting something of which I've been in staunch denial: Right now is a time when I have to let my previous life go. This is a Big Damn Deal. It's agonizing to admit and I am deeply mourning the loss. Maybe it won't always be this way, maybe it will. I'm going to stay in my cocoon as long as I need to while figuring out how to thrive in new ways.

This is one of those "active listening" situations where you don't have to feel obligated to give me advice. Thank you for listening. I don't need ideas about what artsy thing I can maybe do to keep myself occupied. I assure you, I have thought of it. I have a lot of time on my hands to think right now. Also, (and I count myself fortunate that this is not a regular occurrence in my life), I'm going to offer a "Freaky Friday" deal to the next person who even insinuates that I'm not "trying hard enough". I'm actively doing the best I can, which includes writing this blog - the thing that currently gives my life meaning.

Monday, September 8, 2014

Ableism: Link Reading List

After a few celebrities neglected to check their able-bodied privilege, my plan to write a blog post about ableism got away from me. Ableism is discrimination or prejudice against individuals with disabilities. It is very much alive and surrounds people with disabilities wherever they are.

You've probably seen the meme of a woman kind of standing up from a wheelchair and reaching for an item on a grocery store shelf that happened to be alcohol. I won't share it because I refuse to perpetuate her abuse. Adults who use wheelchairs are just as allowed to have a drink as any other adult. There is nothing about the picture in and of itself that is wrong or dishonest.

***NEWSFLASH*** People who use a wheelchair can often stand for a short time or walk short distances. "Wheelchair" doesn't have to equal "legs are broken". It is a tool to assist people who need extra help getting around for any of myriad reasons, which is something people who are able-bodied take for granted every day. You probably don't know why a stranger is using a mobility device and it is NONE OF YOUR BUSINESS. You are not the mobility police.

I've talked about "inspiration" before. People with disabilities are here neither to inspire people who are able-bodied nor to be the target of your jokes. Neither are we obligated to teach life lessons to strangers everywhere we go. It makes me cringe to have to say this, but we are people just like everyone else.

If you'd like to learn how to be an ally for people with disabilities, here are two more important links I hope you'll read completely and consider fully:

10 Ways To Avoid Everyday Ableism and 4 Ways To Be An Ally To People With Invisible Disabilities

***Edited to add: If someone is telling you "ableism is happening in my life everyday", don't say "No, it isn't." Use your empathy.

Monday, August 11, 2014

Compassion and Suicide

Syrup-drenched inspirational meme invocation aside, I believe that having compassion for others (and ourselves) is one of the most important actions we can take in life. To be compassionate in regards to any and every facet of other people's lives is to acknowledge the validity of the whole person, not just the parts deemed acceptable for public consumption. Those of us with chronic illnesses understand this better than many. 

One thing the general public should understand is that suicidal ideation (thinking suicidal thoughts) isn't always driven by the desire to die or be dead. Sometimes, it's an impulse. Either way, your brain is literally trying to kill you. 

In this case, let's say your brain insists that you "run into that knife" or "fire that weapon" or "take a step off that bridge", but you have absolutely no true desire to do so. (In my experience, that voice is an incorporeal demon filling the interior of my mind like Bob from Twin Peaks, forcing unbearably clamorous orders and never letting up.) The messages invade your mind space ALL DAMN DAY and it is all you can do to keep them at bay so you can get your chores or reports done. You simply cannot get far enough away from it. I've experienced suicidal ideation due to both this impulse and bipolar disorder. How categorically alarming, frightening, and exhausting it is.

There are SO MANY of our selves/friends/family members/neighbors/strangers who struggle through every single moment while hauling the leaden weight of an uninvited demon or two everywhere they go. We are doing the entire population a grievous disservice by silently allowing people to combat those demons alone. As my wise friend Seth says, "We need to say that it is ok to say when we are in trouble and be able to have the tools available to us not just to help in crisis but to show us how to live with it."

Where do we begin? With compassion.


“You are so brave and quiet I forget you are suffering.” Ernest Hemingway.

Folks, please pay close attention. I keep seeing posts that say things like "If you're feeling depressed, seek help!" This is all fine and good except for the reality that most people who are suffering badly are truly crippled and in no frame of mind to seek help. Also? They likely already ARE getting some form of help for themselves. ***If you know someone is depressed or suffering from another type of mental illness or bad situation - PLEASE REACH OUT TO THEM. They may not be in a place to be able to accept your help, but do not take it personally. Compassionate action is worth the try.

More info on being an advocate and finding support for everyone:

Love, love, love.

Sunday, August 3, 2014

The Current State Of My Artistic Process - Trying, Succeeding, Backsliding, Failing, Being Disappointed, Getting Through It, And Starting Over

I don't know that I have a particular artistic "process" - I've never sussed it out - but I can tell you what it's been like for the past couple of months:

- A few layers of chronic fatigue brain fog are lifted with medication. Awareness and brain function aren't drastically improved, but HOORAY!

- I lay out a burlesque act that I've desperately wanted to perform for a few years and get booked! I think I can pull it off whether or not I'm feeling awesome. By bouncing my idea off of other performers and getting their feedback, it is solidified as a brilliant plan. It's encrusted with gilded pomp and circumstance and the grandest/most understated performance plan I've ever hatched.

- I spend a lot of time, energy, and resources on mapping out my music, plotting choreography, and scouring for and commissioning costume pieces. I spend a few other people's time, energy, and resources for related reasons. (Scarlett O'Hairdye, Mandy Flame, and Rick and Seraphina of Meneldor Photography are made of gorgeous magic!)

- I need new headshots and want archive-material photographic evidence of this glorious costume, so I set up a photo shoot. Whimsy and joy ensue!

- It takes some effort, but I have fun rehearsing my act. Oh, MAN is it going to be spectacular! I'm making it happen. All the pieces are falling into place.

- I have an asthma attack and end up in the ER a few days before showtime. My GP says I have a viral infection on top of my asthma and allergies and it will take its own time to pass. I alert the producer and give it a few days. Meanwhile, I can't rehearse.

- The day before the show arrives and, while I feel a bit improved, I know there is no way I'll be able to make it happen. FRUSTRATION. DISAPPOINTMENT.

- I realize I can't/shouldn't do this or any act if I'm not feeling my "best" because a certain amount of energy needs to exist in order to pull off anything an audience thinks is worth paying money for. I know falling ill before a show can happen to anyone, but this is my life. My best truly isn't good enough in this scenario. There is no way to know whether or not I will feel my best at any given moment.

- My efforts are not a complete loss and I am so grateful for the faith that people do have in my abilities. I am, however, disappointed that - once again - I wasn't able to follow a project to completion and let off my big kaboom. (I have so many kabooms inside of me.) There may be another opportunity, but I can't afford to hold my breath (physically or emotionally, har!) Meanwhile, I have wonderful photos like this one to dream my dream by:

I'm super good at dreaming.

Thursday, July 31, 2014

Food Sensitallergy Humor! (Repost)

Thanks for this, Hot Tipper (and Besto) Molly! This is us every day. Dammit, SkeleBesto*!
*(SkeleBesto also goes out of her way to make food that won't hurt me and I love her forever!)

Tuesday, July 29, 2014

Emergency Surrealism

So last night, I leave the theater in the middle of "How To Train Your Dragon II" for an asthma attack.

I stumble into the ER, struggling to breathe: 

-"Hi, do you need labor and delivery?" 
-A distraught baby comes in, whom I can do nothing to help, which triggers my PTSD of the same. 
-A Code Blue alarm goes off, triggering my PTSD of the same.
-"Just try and stay calm," says a nurse, unaware, as she catches me sobbing the choking cough of an asthmatic who can barely breathe.
-From across the hall, a pack-a-day voice makes sure everyone knows: "And I said 'In the name of Jesus, get outta here, Satan!' Because the color was, y'know..." 
-A Shriner/clown car goes by, tooting its absurd horn.

Womp womp.

I feel like I deserve a punch card for having recently made four trips to the ER in as many months.

Sunday, July 27, 2014

Summertime Reflection

24 summers ago, symptoms of Myasthenia gravis began to impede every corner of my life. At the time, it was impossible to imagine MG ever being the least of my medical worries. If I could go back and give 12 year-old me any advice, it would be to remain confident in myself that I would still pull off an amazing life. New tagline: Classing up the sidelines since 1990!

Thursday, July 3, 2014

"Why Are You In A Wheelchair?": Airport Edition

The following is based on my personal, non-confined experience as a semi-regular wheelchair user. Another wheelchair user probably feels differently about their own experience.

Questions and statements I often hear from strangers in public when I'm using my wheelchair: "Why are you in a wheelchair?", "What's wrong with your legs?", "Why are you in a wheelchair if you can walk?", "You're too young/too good looking/not disabled enough to be in a wheelchair," "I was in a wheelchair for two weeks once; I know exactly how you feel."

Truthfully, it's none of your business. I know most able-bodied people have good intentions when trying to relate to me and my wheelchair. Questions and statements are fine with me, but please think before you ask. "How do you like the weather today?" and "It sure is chilly in here!" are perfectly acceptable. They are the same conversation starters you would use for anyone else. If I want to talk about my wheelchair, I will. Personal questions aren't usually chitchatty. It takes a lot of energy for me to chat with strangers, especially when travelling.

"Do you need help getting to/on/off/away from the airplane?" are questions I like to hear from airport staff. Travel can be exhausting and awkward and their particular offer of help is always welcome. Someone zipping to my side from across the room and grabbing the purse I dropped while saying "HERE LET ME HELP YOU!" is unnecessary. I'm capable of picking up something I dropped and will ask for help if I need it. I appreciate that people want to help, but please don't assume that, just because someone is in a wheelchair, they are automatically helpless. I am a human who is sitting down and can often get more done than a non-wheelchair user might speculate. No pity necessary!

Additionally (this is important): If you are not disabled, please don't camp out in the handicapped stalls in public restrooms. I recently had to abandon my chair in the aisle (a privilege not all wheelchair users have) and awkwardly use a standard stall because an able-bodied person was taaaaking her tiiiime in the only handicapped stall with her toddler instead of using a standard stall or a family bathroom. I personally understand that taking small children to the bathroom is a feat in and of itself, but remember that, more often than not, a disabled person's *only* option is that stall. Able-bodied people have more choices. Get in, get out! We're all trying to get where we're going without peeing our pants.

Sunday, June 22, 2014

June Is Myasthenia Gravis Awareness Month

Myasthenia gravis (MG) is a chronic, autoimmune, often invisible neuromuscular disease that has a not-quite-understood origin and no cure. It is Latin for "grave muscle weakness" and affects 20/100,000 people in the U.S. The article MG in the Simplest of Terms says: "'Autoimmune' means the body is attacking itself. The most basic way to explain this is to say that MG causes our bodies to make antibodies that work against our own nerves and muscles".

MG has the distinction of being the first chronic illness I was diagnosed with. I was diagnosed almost 25 years ago - when I was 12, starting jr. high, and starting my period. That was fun times. My community already had one suspicious eye on me before the droopy eyelids, other sagging facial features, ragdoll presentation, and random falls in the hallways at school solidified that I MUST be on "dope".

Fortunately, my mom and pediatrician did not believe I was on "dope" and I was sent to a specialist in another town (mine didn't have any neurologists at the time). My first neurologist was good at diagnosing and medication dosages, but had a terrible bedside manner and made me feel really badly about myself. It was as if the MG was somehow my fault and I wasn't proceeding with the foreign concept correctly or quickly enough for him. ("That's why they call it WORK! Because it's damn HARD!) This is laughable because I was, in fact, working hard AND people with MG tend to move pretty slowly. I was relieved when a new doc from out of state moved to my town and was competent all around (and had the most stylin' cowboy boots I'd ever seen).

There are two types of MG: ocular (affecting the eyes only), and generalized (the type I have), which affects all the voluntary muscles of the body ( skeletal muscles, lungs, etc.). 

Symptoms include: a drooping eyelid, blurred/double vision, slurred speech, difficulty chewing and swallowing, weakness in the arms and legs, chronic muscle fatigue, difficulty breathing. These symptoms can fluctuate wildly from hour to hour and day to day, which is one reason why a person might be using a wheelchair one day and not the next.

One of my favorite ways to explain the general muscle weakness: It's like walking through thigh-high quicksand while also trying to swim through it.

Here is another beautiful analogy:

My symptoms started out in a pretty awful place, but thanks to a thymectomy and regular doses of Mestinon (pyridostigmine) and occasional prednisone, have been relatively stable for several years. I still have flares, but they aren't nearly what they used to be. The jury is out on how much my chronic use of this medication has contributed to my other health problems, but there's no real way to know. What I do know is that the benefits of these medications (there could have been so many more) have improved my life to a huge degree.

So! Why do we need awareness? Because I want people (including medical personnel) to be able to pronounce "myasthenia gravis" and "pyridostigmine" and have a basic idea of what they are. Because explaining why I can't do something today that I could do yesterday or this morning takes more energy than I often have to spare. Because this:

Handicapped Parking "Police" Rage from

Friday, June 20, 2014

Save The Date: 3rd Annual Suicide Prevention Benefit

If you're going to be in the Seattle area on September 20, 2014, consider supporting Crisis Clinic at the 3rd Annual Suicide Prevention Benefit to be held at The 2 Bit Saloon. Your donations toward this important cause will help save lives!

Thursday, June 19, 2014

This Is Me Laughing

Remind me to tell you the one about five psychiatric medications, three providers who can prescribe them, and how none of them are on the same page. #moarcrisis #lakewoebegon

Wednesday, June 18, 2014

Medicare Part B Premiums

I was surprised to learn that Medicare Part B (medical insurance) usually costs 
$104.90+/month out of pocket. The $147 yearly deductible is pretty great, 

Thursday, June 12, 2014

Social Security Benefits - Not A Cash Cow

It's no secret that some folks out there think that those of us who receive any kind of state or federal assistance must be lazy and/or gaming the system. As someone who has been through the grueling application process (along with a couple of saintly assistants), I can assure you that I am not lazy (I have references!) and it would be *incredibly* difficult to achieve fraudulent benefits. Honestly, doesn't knee-jerk expecting the worst out of people make one unnecessarily tired and irritable?

You'll notice in Table 2 of this snapshot that the average monthly benefit for disabled workers, for instance, is $1145.70/month. That's $13,748.40 per year - just over the 2014 Federal Poverty Guidelines. Some people qualify only at or below the poverty line.

Living in the multiple roommate situation I'm currently in in Olympia, WA, I can make my benefits work. I could never make ends meet in Seattle, which is partly why I had to move. I love Oly, so this ends up working out well for me. I am incredibly grateful to be able to get back from a system I put money into over the course of my working life for just this sort of purpose. I would still much rather be working. (P.S. Hire me.)

Tuesday, June 10, 2014

"Inspiration Porn"

"Stella Young is a comedian and journalist who happens to go about her day in a wheelchair — a fact that doesn’t, she’d like to make clear, automatically turn her into a noble inspiration to all humanity. In this very funny talk, Young breaks down society's habit of turning disabled people into 'inspiration porn'."

I know some of you have an aversion to TED Talks, but please trust me on this one. If you pay full attention to only one thing I have posted recently, let it be this brilliant monologue.

Without transcribing the entire thing:

In our society, "(Disabled people are) not real people - we are there to inspire."

"I'm not here to inspire you, I'm here to tell you that we have been lied to about disability. We've been sold the lie that disability is a bad thing - capital B capital T...and to live with disability makes you exceptional. It's not a Bad Thing and it doesn't make you exceptional."

Regarding "inspirational" images like this one:

"They objectify disabled people for the benefit of non-disabled people. 'Well, however bad my life is, it could be worse. I could be that person.' But, what if you are that person?"

"They're not doing anything out of the ordinary. They are just using their bodies to the best of their capacity. So, is it really fair to objectify them in the way that we do? To share those images?"

"I use the term "disabled people" quite deliberately because I subscribe to what's called the social model of disability, which tells us that we are more disabled by the society that we live in than by our bodies and our diagnoses.'"

"That quote, 'The only disability in life is a bad attitude'", the reason that that's bullshit, is that it's just not true, because of the social model of disability. No amount of smiling at a flight of stairs has ever made it turn into a ramp. Ever."

"Disability doesn't make you exceptional, but questioning what you know about it does."

Sunday, June 8, 2014

Page View Winning! 10,000+!


Saturday, June 7, 2014

PWD: Performing While Disabled

Speaking of performing while disabled, I want to revisit what it's been like for me to be alter-abled in show business lately. The answer is: particularly rough, chameleon in appearance, still promising.

I posted this on Facebook about a month ago:

"My 5 year burlesqueversary came and went last week. While I haven't been able to perform as much (or as well) as I would have liked to over time, I've remained connected to the community by attending and otherwise being involved with as many shows and other events as I possibly can. I nurtured and raised TaTa Hari in Olympia and am feeling positively about returning to this fierce, compact arts community in a full-time capacity. Let's grow some more badass art! However it manifests!"

I maintain a near-constant state of cautious optimism that I will soon be able to book, rehearse, and be polished for a show (burlesque, music, or otherwise) without having to cancel due to sudden illness. Even though I've finally been able to start gathering costume and prop bits for an act I've been dying to finish for a couple of years, my optimism is having a difficult time sticking. I feel like I'm going through the motions to spend time and money on yet another act I'll never get to perform. I've also had to skip the last couple of shows I had tickets to see because I didn't have the spoons or was otherwise too ill to go.

Tonight, happily, I was able to attend a brilliant show! The Cabiri have been weaving mythological tales through theatrical performance for the past 15 years. 15 years ago, I was a performing member of The Cabiri. It was one of the defining moments in my life. They carry the momentum of a divine, ethereal battle for eternal balance. I wanted to live and breathe and cast mythological spells over the masses with all the splendor and vitality I could muster. Tragically, try as I might, my body sputtered and stalled instead - again and again. This and other life events spelled the end of my time in Cabiria. Of course I moved on, but I was crushed. I'm still crushed when I think about it. I continue to attend their events because I believe in what they're doing and they're damn good at it. Each show leaves me feeling partly jazzed, partly wistful, and partly in need of rebandaging my heartstrings. In other words - they make me feel truly alive! (TEWAZ is breathtaking. It runs at Cornish Playhouse through June 14. GO SEE IT!)

Fortunately for my optimism, I have a new strategy for my upcoming act. It will see me radiating, but using quite a bit less energy than usual. I also set up a photo shoot for this particular outfit, so I will have had fun with that even if performing the act never works out. Stay with me. I promise it'll be spectacular!

Disability and Burlesque: Interview with Elsa E. Sjunneson-Henry

Last week, I spoke with feminist scholar, disability rights activist, and burlesque historian Elsa E. Sjunneson-Henry of Feminist Sonar. Sjunneson-Henry (aka Lydia Ransom) recently portrayed Mad-Eye Moody in "Accio Burlesque! A Burlesque Tribute to Harry Potter" at Seattle's Annex Theater. As soon as I learned Ransom planned to burlesque Mad-Eye, a character with multiple disabilities, I knew I couldn't miss it.

In a show about Harry Potter, Ransom said, Mad-Eye was "the only character I could portray and the only person (producer Sailor St. Claire) would allow" to play that character. "I was using what I already had (a removable eye) to make the character make sense. I couldn't articulate what it's like living in my body. I had to be both me and Mad Eye and it was difficult to parse." This is something we at Punch & Pills & Pie can absolutely relate to. Is my burlesque aspect, TaTa Hari, alter-abled? If so, how often and when?

Mad-Eye Moody appeared onstage with the dynamic essence befitting a slinky, sensual Auror to "Girl With One Eye" by Florence And The Machine. "I wanted to make the whole audience find disability sexy. Everyone thought it would be funny, but I said it would be 'face-melting hot'." And it was! The audience laughed at first, then took notice of Moody's artful and clever choices in clothing removal, then gasped in awe when (Is he? Can he? Will he?) Moody removed his eye in the knee-weakening finale. Judging by the whooping and clapping and exclamations to seat mates, Lydia Ransom evoked the sexiness of disability as she meant to.

"There was the potential for devotees" due to taking out the eye, Ransom stated. A devotee is someone who has attraction to disability - "a sexualised interest of people in the appearance, sensation and experience of disability. It may extend from normal human sexuality into a type of sexual fetishism." "Two different guys asked for my number, which doesn't usually happen. Since this act isn't a novelty, that makes me feel a little weird." (This blog will be delving into devotee culture in an upcoming post.)

"I pushed the boundaries of crip drag. I had the choice to use the peg leg to amp up my own disabilities. Everything else was legit, so I felt ok taking a bit of license." What may have initially appeared to some as a novelty act proved to be thought provoking, boundary-pushing, and indeed face-melting hot!

Monday, May 26, 2014

Strength In Damage Repairs

Sometimes, people say "I don't know how you do it. You are a strong person."

What I am is stubborn and I like to compete with myself. I am also porous and adaptable and have rips and cracks. Every nook and fracture is a valuable part of me. My inner light pools, seeps, trickles, rises in tendrils, and bursts through them, out into the world. Reciprocity Rapture: I allow the light of the world to shine back in.

I adore the imagery of the lyrics, the sculpture, and the repaired tea cup:

"Ring the bells that still can ring,
Forget your perfect offering,
There is a crack, a crack in everything,
That's how the light gets in."
- Leonard Cohen

Sculpture, "Expansion," by Paige Bradley

"Kintsugi" or "Kintsukuroi" is Japanese for "golden joinery" or "golden repair". It is "the Japanese art form of fixing broken pottery with lacquer resin dusted or mixed with powdered gold, silver, or platinum..." "As a philosophy, it speaks to breakage and repair becoming part of the history of an object, rather than something to disguise."

Tea bowl fixed in the Kintsugi method

I am a strong person, in part, because of how I have learned to navigate the damage of life. I also like to tell myself "I told you so!" when I inevitably win.

Saturday, May 17, 2014

Wherein "Psych Ward Inpatient" Is Added To My Resume - Part I

Trigger Warning: Psych unit (positive), Hulk rage, car accidents, sound triggers, rape

I recently spent nine days in the psych ward (voluntarily and for the first time) with no access to my phone or the internet, and endless access to my brain using new and improved skills (and some medication adjustments). I hadn't heard much positive information about such a stay until I experienced one myself. I know not all facilities are created equal, but to say I wish I'd have done that sooner/multiple times is an understatement. This episode was by far not the worst I've experienced, and I'm so glad to have had a safe place available to land that particular "Forty Acre Fit". (Thank you forever for that phrase, new kindred spirit friend). Reintegration is going slowly, but positively.

I didn't realize until I had been discharged from the unit that it was my under-treated PTSD that had triggered the reaction that led me to the hospital. 

You see, a car squealed its tires somewhere and my Hulk rage immediately consumed me from the ground up.

I spazzed out of the passenger seat of a not-all-the-way-stopped car and immediately beat the sidewalk with my aluminum walking cane until it split in half. (Where's that kind of energy when I NEED it?) I followed that up by dumping the contents of my purse in the road and "speed" walking in no particular direction (sans cane = terrible idea). Eventually, I stopped and said to my companion, "Take me to the hospital!" And he did. Fortunately, I had previously received a referral from my psychiatrist for a hospital to go to should such an occasion arise. After waiting 18 hours in the ER and psych triage, I was finally admitted. (Part II of this series will focus on the therapeutic methods of the hospital program.)

Having unsealed some mental compartments in the past few weeks, I realized why the tire squeal was such a trigger for me. I've been in a few fender benders over time, but I was driving home about ten years ago after a terrifying night of being raped, when my car was t-boned by another vehicle (100% the other party's fault in each case). It wasn't the worst accident, but it was intense and shook my body and mind up pretty badly. I was recently a passenger in an accident that was also not my fault, so I think that woke up the dormant memories (and my old whiplash injuries where they live part time). I'd already been having trouble managing my bipolar, anxiety, and PTSD (obviously) symptoms since my marriage unraveled for good and I hadn't noticed the ramp-up.

I'm pleased to say that I now have more tools with which to notice when something like this episode might be approaching and how to deal with it accordingly.


Friday, May 16, 2014

Gluten-Free Shenanigans

What's with the sheer hate from people who are not affected in any real way by gluten-free situations? There's so much blood in the streets of the internet right now! Yes, people choosing to "go gluten-free" as part of the recent fad may be appropriating legitimate medical issues (and doing those of us who actually have them no favors), but that in and of itself is no skin off my gluten-free nose. The more people choose to eat that way means more options for me at the grocery store and in restaurants. I urge you to see your doctor if you are concerned that gluten might be causing you problems, but in all likelihood - it's not. Sorry. I have plenty of evidence proving that my body and gluten are enemies. I'm choosing not to elaborate because it's NOBODY ELSE'S BUSINESS and I don't have the energy. Why waste yours?

***Edited for clarification (due to comments on shared posts of this blog):

What prompted me to write this are the surprisingly heated, mostly one-sided complaint threads about GLUTEN that have begun scratching through the internet walls. 

This photo:

and the comment threads that follow them around seem to be at the heart of it.

That photo has spawned friends of friends making comments about "f*cking idiots" and "r*tards" and "gluten sensitivity myth" and "sheep". For me, all this does is add insult to injury. I WANT THE GOOD PIZZA ALREADY. COULD YOU AT LEAST INSULT ME WHILE EATING THE GOOD PIZZA?

The link is to a questionable article about ONE study containing only 37 research subjects - the evidence of which is not exactly laid out. If I remember correctly, one study also got us the erroneous "vaccines cause autism!" craze and the "the body needs a certain amount of lead in it to survive!" jaw-dropper.

ANYWAY. The point of my post: Whether or not someone medically needs to eat a gluten-free diet is irrelevant to the lives of everyone else (especially those who are personally unaffected by gluten in any way). Kindly shut it and mind your own.

Wednesday, April 23, 2014

Try This Exercise

Able-bodied friends! I would like you all to consider something. Please think about it with focus and not with the cursory attention we typically use to scan the internet.

1) Disability is a social construct. (More on that later.)

2) How many times have you judged someone's worth, even passively, based on limited information of nebulous origin, and then distilled it into "inspiring" or "pitiful" or "scary"?

2) What would you do if you were suddenly unable to live your life the way you're currently living it? Say, part of your body suddenly malfunctions beyond repair and you simply...can't. Not "won't", no choice - CAN'T.

An exercise! From the moment you next try to get out of bed, think about how you'd do it. If each of your skeletal muscles won't move when you ask them to, your joints paralyze you with fire at the slightest movement, or your mind is padlocked against your will and refuses to engage outside of itself; think about the sheer amount of energy it might take (physically, mentally, and emotionally) just to get out of your bed. Now, move through every miniscule step of your daily routine with this intention.

How's that grip on your toothbrush? Do you need help zipping your pants or getting into your shirt? Can you type today? Can you have a conversation on the telephone? Can you get to a meeting on an upper floor of a building that has no elevator? Is it easy for you to get to the bathroom and into a stall by yourself at work? Can you use the kitchen in the same way? Can you get through the doors in every building by yourself with ease? Can you easily step off the curb and get across the street before the light changes? Have you had tears in your eyes all day and little support from people who don't understand why today is so different from yesterday? Are you just trying to live your life like everyone else?

This list could be infinitely longer, but you get the idea.

Please share your results!

Monday, April 21, 2014

My Current Personal Experience With Herd (Community) Immunity

Reason #27591 why herd immunity is so important: Even though I would really, reeeaaally like to, I can't get an MMR (measles/mumps/rubella) booster because I am immunosuppressed and could get sick from it. This is unfortunate timing for me since there have been cases of measles popping up in Seattle.

Most of you are healthy and will not get sick from this vaccine. Herd immunity has been suffering since healthy people have been choosing not to vaccinate themselves or their healthy children. (All vaccines and their timing are not created equal, but this is not the thread in which to discuss that.) One result of this has been the new cases of measles in Seattle. I cannot protect myself from it any further than I already have, so herd immunity is incredibly important to me.

HEALTHY ADULTS AND CHILDREN: Please understand - you can incubate measles and not get sick yourself, BUT you can pass it on to people like me who are more prone to serious complications from it.

I DO NOT WANT TO DEAL WITH MEASLES. Please don't give it to me. If you think you've been exposed, please let me know which rooms you've walked into recently so I can avoid the airborne droplets. As always, do keep inviting me to events and let me decide whether or not to show up instead of making that decision for me.

I don't want this thread to devolve into angry jabs, I just think it's extremely important that people have a face to put with this situation. It is very real.

***EDIT 4/26: My doctor and I discussed this issue further and he concluded that at my current level of immunosuppression, the risk of me catching measles at this time was more concerning than the possible side effects from the vaccine. I was admittedly a bit nervous because the MMR vaccine is live, but I got it four days ago and haven't yet noticed any complications beyond being extra exhausted. I am relieved that I have the added protection (even though it might not work as well because I'm immunosuppressed.)

Friday, April 18, 2014

Conversation: No Need For Fear

Of all the adjectives in all the world, my life cannot be described as boring. It is captivating and complicated and swings from exhilarating to tragic at mind-boggling intervals (not just because I'm bipolar, heh). I have heard that it can sometimes be difficult to know what to say to me based on all of that. Examples include: Your energy is so intense that I'm afraid to approach you; Frankly, disabilities scare me; I have no idea what to say to someone who's lost a child when mine is standing right here; I don't know how so many terrible things could actually happen to one person; etc. Those are all valid feelings and I understand them. In this society, most of us are simply not taught how to navigate other people's difficult times. I've had lots of practice on both sides and I still sometimes feel lost and awkward when it comes to others.

It's true that I don't have a lot of energy to use at any given time, but I am a person who would much rather address important topics than not talk about them at all. Forever ignoring major issues is not my style.

Please don't be afraid to talk to me. Sincerely. About anything. Things have been this way for long enough that I'm an expert wave rider. If you have enough interest in my life to talk about it, why not speak with me directly? I wouldn't keep putting myself out here if I didn't welcome conversation. Through this lens, I've learned myriad life lessons and sharpened my sense of self-awareness. I'm not particularly fragile and there's no need for pity. I'll accept love, though! I love love.

Monday, January 20, 2014

Internet Lies

Thank you to everyone I've been corresponding with about the suicide conversation. I have been working on that story as time and energy allow and will put something out as soon as I am able.

Energy is not something I have much of a supply of right now. I'm weathering a pretty major upheaval in my life and my health, which wasn't doing very well before that, has responded poorly. I'm still showing up for life as much as I can, but 80% of my time is being spent sitting quietly and counting my arm hairs while chuckling at the bird variety show outside my window.

I bring this up because the internet can paint false pictures. I want to make sure my friends know I'm not blatantly ignoring them when I say I'm too low energy to get together and then they see pictures online like this:

and this:

which often happen on the same day and look very much like my life is bursting with costume parties I'm not inviting them to. To be fair, there are many events available at any given time for me to get dressed up for, but I only attend a fraction of them (nice problem to have, I know). I try to choose the events that will contain a large number of people I know and love so I can hug them all in a concentrated space. For someone who doesn't actually enjoy the act of dressing up all that much, I am blessed with an extensive costume closet/room/apartment that I can pull outfits from at a moment's notice. My entire magpie life has been dedicated to this purpose.

The first event of the day was a friend's music video shoot and the second was a private party. (Ok, this is evidence that the life I have carved out for myself is freakin' awesome!) I was only able to shoot one scene of the video and spent the majority of the time sitting around watching the rest of the fun (which is often how these things go for me and I do enjoy watching the parts I can't participate in). I lasted less than half an hour at the private party due to a series of unfortunate events I don't feel like detailing here.

Today, I'm hiding out to recuperate and catch up on my bird stories. See you in a week, party times!

Tuesday, January 7, 2014

Opening a Frank Dialogue About Suicide and Suicidal Ideation

We've turned that seasonal corner where the days are getting longer but the light can be endlessly dreary, The Holidays have passed (for better or for worse), and a creeping dread begins to seep into the shadowy corners and trap doors of so many minds. For some people, this is a familiar, difficult battle. For others, this frightening crash course is about to knock them into an undertow and leave them little with which to right themselves. People with seasonal affective disorder and any of the mood (e.g. depression, bipolar) or anxiety disorders can be particularly triggered this time of year. This makes me think it's past time for a frank, respectful discussion about suicide.

There is a colossal stigma around suicide due to the commonly held belief that people who succumb to it are simply weak, selfish, or not trying hard enough. I must stress how faulty and damaging this line of thinking is. Suicidal thoughts are incredibly oppressive, can pop up randomly, and don't necessarily correspond with an external trigger. They are not something that is easily shaken off. Suicide is largely pondered, not pondered, planned, not planned, attempted, not attempted, completed, and not completed by people with mental disorders. Probably no one would say, "Walk it off, you lazy ingrate!" if you asked for help with a heart attack, toxic appendix, or missing limb. Brain disorders and their symptoms are just as real and valid as any of those ailments, but are often dangerously written off. Suicidal ideation (having suicidal thoughts) is already so isolating, it's no wonder some folks try to keep it to themselves instead of talking to someone or asking for help.

I would like to put together a collection of candid stories from people who have been suicidal (anonymously if you wish). I fully realize the delicacy of this request and I will treat each story with respect.

I would also like to hear from allies and gather information on how best to be of help to someone who is thinking about suicide.

Please send all correspondence to

This has been purely my anecdotal opinion. If you are having any thoughts about suicide, I encourage you to talk to someone you know and trust or contact any of the following (no matter how pointless or difficult it feels):

American Foundation For Suicide Prevention
In an Emergency, Contact:
  • —Suicide Prevention Hotline: 1-800-273-TALK (8255)
  • —Psychiatric hospital walk-in clinic
  • —Hospital emergency room
  • —Urgent care center/clinic
  • —Call 911

  • Resources for Help

    • School counselor, teacher or coach
    • Crisis telephone helplines [1-800-273-TALK or LGBTQ Focus 1-866-4-U-Trevor]
    • Private therapist, or counselor
    • Mental health agency
    • Hospital emergency room
    • Clergy or religious leader

Saturday, January 4, 2014

"People First" Language! Repost: "A Phrase To Renounce For 2014: ‘The Mentally Ill’"

I love the idea of "people first" language. People are indeed people first, and not defined solely by their mental illness (or femaleness or gayness or...) Maybe the phrase "people with mental illness" doesn't roll off a headline with the slickness of "the mentally ill", but it removes the marginalizing and discriminatory "other" designation that feels like a pox upon my head every time I read or hear it. I hope to see more of this type of awareness in the media and between friends in coffee shops.

A Phrase To Renounce For 2014: ‘The Mentally Ill’

All The Reposts!

I know I've been reposting a lot of articles. I think it's wonderful that there are so many pertinent stories out there to discuss. I also don't have the bandwidth to write about anything personal at the moment.

People have been curious about what my disabilities are so, in the spirit of conserving my energy, I posted a list in the sidebar of this blog. It will change periodically, but that's the snapshot for today. Feel free to ask me any questions you have, just know that I might not have the energy to answer right away.

*string of tiny pink hearts*

Thursday, January 2, 2014

Repost: "You Probably Don't Have Bipolar Disorder (Or One Of These 7 Other Conditions)"

"I miss my black hair I'm so bipolar :( — Kylie Jenner"

"You Probably Don't Have Bipolar Disorder (Or One Of These 7 Other Conditions)" is a good list of diagnoses commonly thrown around and misused by the general public. (Thanks, hot-tipper Millie!)

Armchair medicine seems to be a big credential at parties. Sometimes, when solicited to explain what it's like to have any of the conditions I've been diagnosed with, I get brushed off with "Well, I think *everybody* has that," or "That happens to everyone, so...". No they don't and no it doesn't.

Just because you can't imagine having suffered a more painful headache than the one vodka just gave you or you've simply decided all by yourself that your stomach ache is gluten's fault doesn't mean you have a clue as to how it feels to literally be crippled by a migraine or Celiac disease. (For the record, I do personally know about migraines, but not Celiac disease.) Try keeping that in mind the next time you're positively sure the kid acting out at the park is "on the spectrum" or that you're so "depressed" you don't know what you'll do until the next season of your favorite TV show comes out.

Happy New Year!

I'd like to thank, with all of my punchy, pill-stuffed, heart pie, everyone who has been reading/contributing to/otherwise supporting this blog! The page views here have picked up exponentially over the past few months and the positive feedback I've been receiving has been stoking the fire in my sparkly feelings factory. While most of the resulting topic discussion goes down on the "pages" of a particular social media site, I'm so glad to know there are also people out there who visit again and again to read and feel connected at their leisure. I'll have A LOT to say this coming year and I look forward to hearing from everyone!