Cripples, Loonies & Richard III

I’m a sucker for a historical tale— as long as it’s full of drama, intrigue and at least one insane king. If the story also has two or three loony royals, that’s even better. Especially if one is suffering from a questionable mental disease that could have been easily prevented if his parents hadn’t been cousins or he hadn’t shagged every woman in sight.

I have a decided preference for true stories— because, most often, the facts are way more interesting than anything anyone could make up. (Err— perhaps someone should tell this to Donald Trump.)

History is full of stories that are, frankly, unbelievable. If you think Game of Thrones is exciting and awesome, you should pick up a book about the Plantagenet family. Those folks were CRAY. Loco en la cabeza. The kind of crazy where one minute they are achieving remarkable victories for England, and the next they are trying to secretly (or not so secretly) murder all their younger brothers before they had a chance to grow hair on their testicles.

Yeah, I’m not kidding.

If you think George R.R. Martin conjured all of his Game of Thrones storylines from his own mind, you don’t know enough about the Lancasters and Yorks. During their Wars of the Roses, the English crown exchanged hands so many times that you’d think it was a fucking game of Hot Potato. The kind you play on rainy days at school during recess. Well, if “recess” were a battle that you had to wear sixty pounds of armor, that is.

I like reading books or watching documentaries about intense periods of history, like these. In fact, I just spent the weekend reading a book by Dan Jones, my favorite medieval historian. Some people like to go to the beach on their days off, I like to read about revolutions, multi-generational family feuds and all the kings named Henry.

Good times.

Anyway, as I turned the last page after Henry Tudor had emerged triumphant over one of history’s favorite villains, Richard III, I started thinking about poor Richard. Sure, he did lots of bad things… but, frankly, so did many other people at the time. Yet, somehow, in the years since, he has emerged as the great supervillain. The Lex Luthor of the Middle Ages. A grasping Voldemort that would lock young Harry and Ron in a tower.

But, what really separates Richard III from all the other medieval baddies? Of which we have many to choose from? He wasn’t the only one to knock off a relative, or two. He wasn’t the only one to steal a crown that wasn’t his. He wasn’t the only one to turn into a paranoid egomaniac.

But, Richard III did have one distinguishing feature. He had an orthopedic disability that caused him to have a serious case of scoliosis. This made him excellent villain material. It’s not surprising that William Shakespeare took that particular trait and ran all the way to the bank with it. It’s super easy to demonize a dude with a crooked and hunched back.

As a person with a disability (and also, scoliosis!), I’m left wondering… if Richard III hadn’t had this medical condition, would history’s recollection of him have been different? Would his contemporaries (and those in the decades following), have had such an easy time shoving him into the “EVIL” category?

At the time, those with disabilities weren’t looked upon kindly. Abnormalities, birth defects and other medical conditions were often seen as a “Curse from God” and punishment for inherent evilness and other wrongdoings. These prejudices persisted for much of human history, and can even sometimes be witnessed today (as much as I wish I could say otherwise).

The disability of Richard III, without question, influenced others’ perception of him. It’s easy to imagine a man that has been “cursed by God” to be capable of really nasty things. Especially in the medieval world where understandings of medicine, the human body, and religion were best left unexplored— and unquestioned. Even William Shakespeare penned these words for old Richard III, leaving us no doubt about how we should view the man’s nature: “I am determined to prove a villain.”

I can say one thing for certain. I’m really glad that I was not born during this crazy period. And that’s not just due to all the beheadings, the wars, and the general miserableness. You see, a girl with a medical condition, like Spinal Muscular Atrophy, would definitely not have lasted for long.

Seriously.

In addition to all the other preventable diseases that could kill me, all it would take is one tiny sniff of Black Plague and I would have been dropped in a patch of dirt outside the churchyard. You know, where the unblessed and cursed are left to rot? After all, sanctified ground within the churchyard is reserved for way better folks— like those that put the decapitated heads of their enemies on spikes outside the village gates.

In truth, I bet my medieval dirt nap would have been met with some relief. “Yay, the cursed girl is gone! Time to get back to sharpening my axe collection.”

Ahh, history. What tangled tales you weave!

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Elizabette Does Tinder

I like to be hip. I like to be cool. I like knowing the latest lingo, the ‘words on the street’— you know, like bae… snatched… and I-Hope-Harvey-Weinstein-Gets-Ebola-And-Dies.

Stuff like that.

I also like to be in-the-know about technology. I want to know about the most recent apps, smartphones and those little fancy robots that run around your house to vacuum up all the Pringles crumbs you left on the floor after your latest Netflix binge. These things are important. And I must know them.

If I don’t know how something works, I feel like I’m missing out— like that one time I wanted a Polly Pocket for Christmas in 1991 and didn’t get it (even though ALL my other friends did). So, this “fear of missing out” leads me to want to try new things. But, this isn’t always a good thing.

For example, a few years ago, I tried watching Game of Thrones. Everyone had been raving about the show… It was a phenomenon unseen since Michael Jackson moonwalked across that stage in 1983 (before he got creepy). So, I borrowed a disc of the first episode of the hit HBO drama, put it in my DVD player, and hit play.

And I lasted about 17.5 minutes before I turned the damn show off.

Holy shit, I have never seen so many decapitations in such a short amount of time.

I mean, I had NO idea what was going on in the plot or who the hell those headless people were, but I had already seen too much of their blood gushing from their spinal column. It’s important to note that I have to be more invested in my characters before I’m willing to see their bodily fluids shooting into the air like the Yellowstone Geyser. And 17.5 minutes is not long enough for that to happen.

Anyway, my experience with Game of Thrones taught me that perhaps all trends aren’t always great. Not all bandwagons are worth climbing on.

The other day, was looking at the App Store on my iPhone looking for a new game to download. Near the top of the most popular list was the social/hookup/friendship/relationship app Tinder. I had heard of Tinder, but really had no idea how it actually worked. My interest was peaked. If it was at the top of the download list, it was worth learning about. I would be one of the cool kids! I would be in-the-know. It would not be like the Polly Pocket incident of 1991.

So, I downloaded the app and set up an account. A person can add a couple photos and write a really brief bio of themselves or their interests. The app then shows you the profile of folks within a 50-mile radius. You swipe to the right if the person seems interesting— you swipe to the left if the person isn’t your cup of tea. If you and another person both swipe to the right, it’s called a “match” and you’re able to type a message to that person (if you want to).

It’s a very simple premise… One quick decision. It’s like cleaning out your closet. Do you want to keep that old Green Day t-shirt, or throw it away? Dump the shirt in the trash? Swipe left. Keep it to see if you might wear it when you need to clean the shower with bleach? Swipe right.

So, I started playing the game. Err— I mean, using the app. It’s very fun and addictive. About 95% of users are trying to impress folks with their gym selfies (why must you stand in front of a mirror each time, dude?)… their sky-diving photos… and their motorcycle portraits. Swipe left. Swipe left. Swipe left.

As fun as it was at first, after a few hours of using the app, I very quickly found myself becoming increasingly judgmental in real life.

At a gas station, I began commenting on someone’s questionable parallel parking ability. Swipe left. Then, I criticized a guy for wearing a baseball cap with the sticker still on the bill. Swipe left. I rolled my eyes when a friend on Facebook used your instead of you’re. Swipe left. At a restaurant, I inwardly cringed at a lady for her unflattering hairstyle. Swipe left.

I was out of control.

I quickly realized that it was Tinder that had turned me into an intolerant and heartless version of myself. If I wasn’t careful, I’d turn into something really horrible. Like an Olsen Twin.

Enough was enough. So, after having the app on my phone for a grand total of 47 hours, I deleted it.

There are some trends that just aren’t worth it.

Fully Loaded

My Spinraza journey has been one of highs and lows. I’ve had laughter and joy— but, also some tears and anxiety. It’s been a whirlwind of emotion that has frankly surprised me. If my journey were a story, I’d say that each injection introduced a new plot twist. You know, a plot twist like a long-lost, evil twin brother in a really good telenovela? Or, a sudden beheading on Game of Thrones? Or the content of a press conference at Trump’s White House? Because, in all those examples, where you think the plot is headed is never where it ends up.

Earlier this week, I had my fourth, and final, loading dose of Spinraza. After these initial doses, I will just have to return to Stanford four times a year for a single dose to maintain the level of drug in my body. Like topping off a tank of gas. Only this gas is worth more per ounce than plutonium. Just don’t tell Kim Jong-un about this stuff. Knowing him, he’d probably try to fling a vial of it at Japan.

My dose last month went incredibly smoothly, as I documented here. I had a confident, gladiator doctor that had the needle in the target zone so quickly that I thought he was joking. After all, it ain’t easy to negotiate the long lumbar needle through my spinal rods, even with the live x-ray guidance. So, this time, I figured that world-record speed would be hard to beat.

But, I was wrong. Upon arriving to the radiology department at the Neuroscience Center, I was informed that the A-Team was going to do my injection that morning. I felt a jolt of excitement. I get the same feeling when I get a coupon for 25% off at Bath & Body Works.

When I met the doctor, it wasn’t Mr. Gladiator… Rather, it was like if Dr. Meredith Grey had suddenly developed an undetermined-European accent and appeared at my bedside. Her friendly smile and slightly wavy dark blonde hair were straight from one of my favorite TV shows.

She was calm, capable and prepared. And she had the needle inserted so quickly that I didn’t even feel one damn thing. Like nothing. Not a twinge. Not a zing. Like Robert Redford was to Horse Whisperers, she was to lumbar punctures. She was the Lumbar Whisperer. I think she should put that on her business card…

“Doctor. Neuroradiologist. Lumbar Whisperer.“

It has a nice ring to it.

It wasn’t long before I was ushered to the recovery area. Feeling so relieved to have the injection complete, I quickly guzzled some water and an entire caffeinated Mountain Dew to ward off any potential spinal headache. (Spinal headaches are a very common side effect of this procedure— and caffeine and hydration can help prevent it.)

It was all going swimmingly… until the nurse returned to take my blood pressure and the numbers too closely resembled the final score of a record-breaking NBA basketball game. The excitement and caffeine had hit my bloodstream like a locomotive— and my blood pressure proved it.

They told me to relax, which is the one thing that is impossible to do when you’re a hypochondriac like me. If you tell me to relax, the exact opposite thing is going to happen— I’m going to panic.

My palms began to get sweaty and I became convinced that I was going to have a stroke and die— taking my expensive plutonium-loaded spinal fluid with me to the grave.

They observed me for over 45 minutes, waiting for the blood pressure to reduce. Which, of course, it didn’t. How could it when I had 4 sets of eyes watching me and telling me to calm down?

It’s no surprise that I began to cry. All the stress from the last few months— the waiting for the Spinraza, qualifying to get it, all the insurance hurdles, going through the discomfort of getting the injections… all of it… it hit me like a wave, pulling me under. I bet Trump gets the same feeling each morning when he wakes up and realizes he’s still president.

Soon after that, the nurse took pity on me and let me go home. My relief was enormous. I don’t remember much of the drive back home to Patterson— I was in a daze of relief, exhaustion and, yes, joy, too.

For you see, I had done it. I had survived my loading doses. I wouldn’t have to do another injection again for 4 months. It seemed like bliss.

Stay tuned, though, for more updates on my progress… I will be chronicling everything here (lucky you!). Most of all, thank you for your support on this journey… it has meant so much.

Brexit Woes

I’ve always been fascinated by all things British. Shakespeare was an early literary favorite – and before he was usurped by George Clooney in my esteem, Jane Austen’s Mr. Darcy held a special place in my teenage heart.

British history is full of drama and intrigue – rivaling, if not surpassing, the bloodiest and wildest episodes of Game of Thrones. I know that may not seem possible. But without the inspiration of British history, author George R.R. Martin would have probably been stuck writing episodes for Sesame Street. Imagine that. Poor Elmo.

Anyway, before this week, I had believed that Britain’s days of strife and drama were far behind them. I mean, they hadn’t cut off a royal’s head in … well… centuries. They had matured and developed into a nation where their most dangerous export was Simon Cowell. But now all that has changed.

Last week, in a shocking national referendum dubbed “Brexit,” a slim majority of the folks living in the United Kingdom voted to withdraw from the European Union. While this may not sound like a big deal, trust me, it is. If you are a fan of analogies, here’s one for you. Imagine that the European Union is the United States, and that the United Kingdom is California. The Brexit vote is pretty much equivalent to California deciding to declare independence and be its own country.

If you were paying slightest bit of attention in 11th grade U.S. History, you should know that the last time part of our country tried to withdraw from the United States, we fought a Civil War to force them back into the fold. So you can imagine the aftermath of this Brexit vote.

In the days following last week’s referendum, the British pound has tanked in value and stock markets around the world have – please excuse the technical term – freaked the $%&# out. France and Germany, the other two most influential members of the European Union, are now treating Britain like a cheating spouse – demanding that the U.K. hurry and pack up their crap to get the hell out of the house.

The British people themselves are heavily divided on this issue – causing tension across the British Isles. I don’t think there has been this much drama in the U.K. since King Henry VIII went on a rampage and got rid of five of his wives.

In the weeks and months ahead, we will see how the Brexit vote will play out for the U.K. and the world, at large. While I hope for the best, I can’t help but quote the incorrigible Mr. Shakespeare …

“Lord, what fools these mortals be!”

elizabette… unplugged

game of thrones