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!