A Korean Romance

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I think the Koreans have caught royal wedding fever. And, truly, how could they not? The nuptials of Harry and Meghan were a feel-good bonanza. A romantic ratings-buster that took the globe by storm. The Kensington Palace Instagram account is collecting followers in a way that The White House can only dream about. (And believe me, Trump has!)

As I’ve made no secret, I have been swept away by all the fairy-tale grandeur, too. A tale of love and unity NEVER goes out of style. Just like cropped pants.

But, it appears that Kim Jong Un and Moon Jae-in— leaders of Korea— are ready to cash in on this phenomenon, too. They want a piece of the love train. A hunk of the buttercream “let’s-join-our-lives-together-so-everyone-can-see-us-on-TV” cake. The kind of cake where if you eat too much of it, though, you could go into diabetic shock and die.

But, this hasn’t stopped them from giving it a go. In a really— I’m not going lie— really weird way. Today, the leaders of North and South Korea met… and talked… and hugged. Yes, you read that right. They hugged. Here’s a picture if you don’t believe me:

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Okay… so… this is probably one of the most awkward hugs I’ve ever seen. It reminds me of the kind of hug that little kids are forced to give each other on the playground. You know, like after they’ve got into a fight over tetherball? It feels like a 1980s afterschool special gone really, really wrong.

But, I see the intention behind it. Every good love story needs that moment of closeness. That kiss. That hug. That nuclear disarmament treaty. A moment where the two royal lovebirds demonstrate their commitment to each other by standing physically close to each other and smiling while everyone looks on. Because, if they are smiling, then it all must be true… and real. Just like Charles and Diana.

Oops, never mind.

But, if this is only the beginning of this process, the mere engagement, what does the future hold? Will they have the wedding of their dreams, or will it be spoiled by a wedding crasher? Like a Trump? Or, even worse, a Camilla??

Only time will tell… but, I’m sure we won’t have to wait long for Lifetime’s latest production. A dramatic reenactment, “Moon & Un: A Korean Romance.

Oh, the ratings!

Tears, A Royal Wedding, And A Whole Lot Of Soul

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I’m still slightly reeling from the spectacle, grandeur and emotion that was the royal wedding of Harry and Meghan. As I’ve made no secret, I was looking forward to this event the way most other people would await other key life milestones… like a job promotion, a college graduation, or the birth of a baby— if that baby were a six-foot beardy prince with ginger hair. I was stoked. I was ready.

I set up two DVR recordings in case of a disaster— you never know when one network could go kaput and you need a backup recording to watch, instead. While this may seem excessive and overly-cautious, I really don’t think so. You never know when a stiff breeze could cause a piece of the thousand-year-old Windsor Castle to fall down on top of the ABC News truck. Shit happens. Just ask all those people in Hawaii who have molten lava running through their neighborhoods.

I woke up early to watch the event and all the guests arriving to St. George’s Chapel at Windsor. It was a beautiful, clear day— I didn’t notice a big wind, which boded well for the ABC News truck. There were celebrities and royals, and a lot of people that I didn’t recognize. I assume these people were friends, or family— and not random strangers or seat fillers like they have at the Oscars.

The sea of arriving colored hats, pastel frocks and dreary grey suits did grow tiresome after a while, which made me briefly regret waking up so early for the wedding in the first place. But, then, when the bride arrived and stepped out of that super old and fancy Rolls Royce, I was transfixed. She looked like a princess from an old Hollywood movie, wearing a simple, classy dress that could just as easily have been fashionable in 1950, as it would be in 2050. Timeless. She floated up the stairs and the church aisle like a veiled pixie. And I mean VEILED! That beautiful lace veil had to be at least 15 feet long. It was big enough to double as a WWII parachute. After the wedding this morning, she could have been dropped by a plane over northern France and still have had time to save some poor villagers from Nazis before making it back to the castle for dinner. Yes, the veil was that epic.

So, by this point in the wedding, I was super committed. I was all-in. But, then, as Meghan swept to the front of the church, where Harry awaited, I saw a glisten in the groom’s eye. I felt a mountain of “awws” rush up from inside of me, in a place in my heart that I usually only access when I’m watching a romantic comedy starring Julia Roberts.

It got worse. As Meghan and Harry were beaming and holding hands during the beginning of the service, I saw beads of moisture escaping his eyes. He reached up several times to brush them away. He was crying. PRINCE HARRY WAS FUCKING CRYING. Holy shit. I felt tears prickle my own eyes.

This was an astonishing development, because I, like, NEVER cry. I’m not one of those girls that cries at the drop of a hat… or when there is an especially touching Hallmark commercial with an old man wearing suspenders and a bow tie. I cry only when I really, really mean it. Like when a loved one dies, a pet has to be put to sleep, or my internet goes down for more than twenty minutes.

So, the fact that I was crying watching a British prince tear up at his own wedding is quite a feat. I didn’t know Harry had it in him. I didn’t know I had it in me.

Luckily, as the boring parts of the service began, Harry and I worked through some of our emotions until we were on a steady keel, again.

Until… Bishop Michael Curry, a high-ranking preacher from Chicago (yes, Illinois, USA!!), took the pulpit for the main sermon. His rousing, passionate speech had the effect of a lightning bolt striking Windsor Castle. It was like a revival had taken root inside of St. George’s Chapel.

Half the gathered 600 guests were struck dumb— confused and bewildered by the crescendoed words flying from the first African-American leader of the Episcopal Church’s soul. A sermon, such as this, had never been delivered at a royal wedding before— events that are generally known for their stoicism, tradition, and… yes, I’m gonna say it… boringness.

The other wedding guests, not incapacitated by shock by Bishop Curry, were either smiling, smirking, or, if you were Prince William, slightly giggling (and hoping no one saw).

But… yes, William, I did see you.

I’m certain William was thinking of his own wedding service, and how staid and vanilla that it was. And that only his cheeky little brother, Harry, could get away with having a rousing wedding service such as this. Lucky bastard.

A gospel choir followed up this sermon with a gorgeous version of Stand By Me, which nearly had me yelling AMEN! at my television while I tried not to cry again. I think I did hear Elton John sniffing, at this point, also, but it could have just been all in my head. (So many things are, after all.)

It was beautiful. But, for fuck’s sake, the crying needed to stop.

I made it through the vows. And all the remaining loved-up cuteness of the bride and groom, to the point when they all exited the church— to the sound of the gospel choir, again— to wave to the crowds outside. Then, Harry piled Meghan, and her parachute veil, into a horse-drawn carriage that they stole from Disneyland to take a ride around town.

Okay, so maybe they didn’t steal the carriage… but, those horses looked so damn perfect that I’d swear that they were animated.

By this point, I was glad the wedding was nearly over. I didn’t think I could handle any more emotion, or pomp, or circumstance. I was emotionally and physically spent. My soul was full.

But, my stomach wasn’t.

So, I pulled out my tiny curried egg sandwiches, and some tea, and chowed down. I didn’t have any fancy china or teacups to use, so I searched for the most royal-looking cup I could find in my cupboard.

The winner? An Aladdin mug.

Before you protest my choice, please take note of the picture on the mug. The palace in Agrabah. That’s where Jasmine lives. And she’s a fucking princess. So, there.

It seems fitting on another level, too. For as Jasmine and Aladdin sang about “a whole new world” in the movie, Bishop Curry’s final remarks to Harry and Meghan were “…we will make of this old world a new world.

And, if this wedding is any indication, they are well on their way.

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Curried Egg Salad… And A Royal Wedding Countdown

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I’m probably one of the last people you’d expect to be a obsessed with Prince Harry & Meghan Markle’s royal wedding— or, really, any royal wedding. But, alas, I am. I’ve been counting down the days to this event the same way a nine-year-old does before summer vacation. I am EXCITED. Let me clarify that further— I am SUPER FUCKING EXCITED.

It is important to note that I’m generally not known to be a person that lacks enthusiasm in my everyday life. Quite to the contrary— my obsessive nature means that if you were to compare my enthusiasm level to Homeland Security’s color-coded terror alert level, I’ll always come in as at least ‘elevated’ — if not higher. I’m like an al-Qaeda terror attack just waiting to happen.

But, there are times when my excitement hits an abnormally high level. Moments when my palms get sweaty and my heart actually races. And, with this royal wedding, that’s definitely happening right now. This is an extraordinary achievement, because usually I only hit this level of anticipation under these kinds of circumstances:

• I’m drinking my first pumpkin spice latte of the year.

• I unexpectedly see a photo of Henry Cavill online.

• I’m watching the Opening Ceremonies of the Olympic Games on TV.

• I get to write a joke about a dictator (preferably Vladimir Putin or Kim Jong Un).

As these scenarios are quite specific, this finger-tingling level of joy is fleeting and rare. But, this time, Harry and Meghan have delivered big time. They’ve dished me up a giant helping of YAAAAAAAY!

I’m totally committed to this event. I’m reading all the news articles about the wedding, following all The Royal Family’s social media accounts, and watching all the TV specials. It’s been great. While I had a similar attachment to Prince William’s wedding to Kate, Meghan’s Americanness makes this especially exciting. Plus, it’s fun to watch the priggish British press freak out about a bi-racial American divorcée marrying their beloved Harry. It makes me want to stand up and cheer. (If I could actually stand up, that is.)

All that said… intellectually, I am not a fan of the concept of a monarchy. I don’t like the notion that a person can be born into a position that, supposedly, makes them better than an entire nation full of people. It’s dumb. And archaic. It’s why America fought a revolution and why France invented the guillotine.

The monarchy shouldn’t exist in a modern world. It really, really shouldn’t.

But…

The fact that it does exist means that I’m going to soak up the ridiculous, messy spectacle that it is. Like a labrador retriever licking a spoon of peanut butter until it’s completely gone.

So, in the hours leading up to the royal wedding, I’ve got everything planned. Here are the pertinent details:

•   My DVR is set for 2am California Time. While I’m super stoked about the whole thing, I’m not deranged enough to wake up that early on a Saturday morning to watch it live. I’m obsessive, but not fucking stupid. Also, I have my DVR set to two different channels in case one network has a technical disaster. Imagine if, as Meghan is about to step out of the car in her dress, a fucking NBC antenna tower falls on top of a royal horse? Signal lost. Feed lost. I would be majorly pissed.

• I’ve got English Breakfast Tea. The jury is still out on if I will actually drink this on Saturday morning, though. I’m generally a coffee girl (as I’ve mentioned previously), but I might give it a go for the tradition of it all… plus, the tea bag has a pretty label.

Curried Egg Salad is on the menu. I’m making mini tea sandwiches to eat on Saturday morning, too. I’m doing curried egg salad, which is the most ridiculously British type of sandwich I could dream up. (I forgot to buy a cucumber at the store. #fail) It’s important to note that I’ve never eaten curried egg salad before. So, it might be total shit. This is highly possible because British food generally blows.

I will be doing none of these things while wearing a hat. I don’t care if hats are required at British royal weddings. I’m not wearing one. Frankly, I don’t need to wear something that will make my head look any bigger than it already is.

I’d best go… it’s time to rest up for the big day. Look out, Harry & Meghan, here I come!

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Mondays, Angry Drivers & Getting to #6

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Some Mondays can exist on their own cosmic plane. An alternate reality where weird stuff happens more frequently than other days of the week. It’s a day for hangovers, short tempers, and trying to get all the things done that you should have done over the weekend — if you hadn’t been rewatching the latest season of The Crown while still wearing your pajamas. By the way, Princess Margaret would have definitely approved of pajama-wearing after 2pm. Her sister, the Queen, however? Not so much.

Earlier this week, I had one of those Mondays. It was the day of my 6th injection of Spinraza and I went into it primed, pumped, and ready. But, the signs presented fairly early on that day that things were gonna be just a little bit weird— like a Kanye West interview.

The drive to Stanford is always arduous— and traffic-ridden. With the number of cars and trucks that are trying to push through the freeways from the Central Valley to the Bay Area, it’s like trying to pass a rump roast through a shower drain.

It always amazes me that so many folks make this long commute on a daily basis. It boggles my mind. I’d have a serious mental breakdown if I had to do that. The kind that would make me unable to enjoy the mythical 4,000 square-foot suburban house that I could maybe afford, but never have time to live in.

On this particular Monday, the traffic, surprisingly, wasn’t too bad— meaning that it was only moderately heinous. You know, like rice cakes or gender reveal parties for unborn babies. It was tolerable, but not something you’d voluntarily go out and do.

Anyway, despite the flowing traffic, the mood of the drivers was decidedly grim. And, frequently, downright hostile. Dozens of horns were honked. Many cars were aggressively passed. And a slew of motorcycles were cutting off cars at each opportunity. There was more tension on that freeway than in the last episode of The Bachelor.

A case of the Mondays was in full-form.

We arrived to the Neuroscience building earlier than expected (shockingly!!), and the nurses took me back to the room to prepare for my lumbar puncture. It wasn’t long before one of the doctors came to go over the last details of the procedure. Given that Stanford is a teaching facility, they work in pairs— an attending (teacher) with a fellow (student). There’s also no way of knowing which doctors will be on duty on a particular day, either.

Having a lumbar puncture is always a tricky business, but when you have complex anatomy, like me, it’s even more precise. I lay on my side and they use a fluoroscopy machine (like an x-ray) to monitor their progress as they move the five-inch needle around my spinal rods and into the small space in my vertebrae to access my spinal fluid— where the Spinraza must be injected. It’s like a playing a game of darts in a really sterile bar— only the target is me, and I’m awake and not a cork board.

Given this complexity, there are lots of factors that can determine how quickly and easily the procedure will go. The experience of the doctor. My position on the table. And, frankly, a good amount of luck.

The fellow (student) worked the needle into position in my spine and all seemed okay… but, the spinal fluid wouldn’t drip out the needle (how you verify that you are actually in the right spot).

Remember when we talked about the Mondays? Yeah, well, it wasn’t finished with me, yet.

The fellow readjusted the needle, back and forth. In and out. Making small centimeter-sized adjustments to try to yield the spinal fluid. But, it WOULDN’T FUCKING COME OUT.

Meanwhile, with each move of the needle, tiny nerve pains were boomeranging around my back and hip. They even tried tilting the table so that gravity might help the fluid to dribble out.

But, no, it didn’t work. Isaac Newton’s Law of Gravity was a piece of shit. I don’t care what they teach us in physics class— it doesn’t always work. Especially in the alternate reality that is a Monday.

After this went on for a while, the attending doctor (the teacher), pushed aside the fellow (the student) and proceeded to give it a go himself. Frankly, if Isaac Newton had been in the procedure room in that moment, the attending doctor might have kicked him in his 17th century balls. A few minutes later, though, he was finally able to get it done. Gravity be damned.

I was so relieved. And so were the sore muscles in my shoulder, and the nerves in my hip and back. I daresay even both doctors were relieved.

About an hour later, I was back in my wheelchair and ready to load up in the car for the ride home. Just as we were opening the doors to my van, another vehicle with a disabled placard began aggressively revving their engine behind us, trying to hurry us into leaving the parking spot so they could take it themselves. It reminded me of all those angry folks on the road from earlier in the morning.

Then, a few seconds later, the driver rudely waved at us— as if hand gestures were like spells from Harry Potter that could magically make me load up into my van, strap me (and my wheelchair) securely inside, all in five seconds.

My friend, Edith, that had accompanied me on the trip, raised an eyebrow as I drove my wheelchair up my van’s ramp, “I think we need to make this car-loading-up thing take much longer than usual. What do you think?

I grinned, “Oh, yes.

Fuck Mondays.

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1990: Revisited

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With the passing of Barbara Bush earlier this week, the news has been awash with memorials of her life and the presidency of her husband, George H.W. Bush— or, as I not-so-secretly call him, “Old Man Bush.” I realize that calling the 41st president by that moniker sounds ageist and mean, but given we had another president with LIKE EXACTLY THE SAME NAME, how else am I to differentiate the two?? I suppose, in some ways, though, it’s better to be “Old Man Bush” than it is “Little Bush” — which is what I called his son.

Anyway, in all honestly, my recollection of the years when George & Barbara Bush lived in the White House are decidedly hazy. I was only around 8 at the time, so anything that wasn’t in the shape of a Lego really didn’t interest me. But, nonetheless, I do have vague flashbacks of Barbara with her shock of white hair and her bright suits the color of a Troll doll’s hair. Seriously, those suits were bright.

I bet she even glowed in the dark.

You know… it’s easy to imagine George and Barbara playing hide-and-seek in the White House. ‘Cause, if anyone were to do it, it would probably be those two lovebirds.

Bar, ready or not, here I come!” A few minutes of scrambling later, and then you’d hear George exclaim, “Come here, you saucy minx, I can see you glowing all the way from the Lincoln Bedroom!

Anyway, I do remember Barbara’s literacy programs in my elementary school, but as I was a certifiable bookworm already, Barbara was truly preachin’ to the choir with me. I don’t think it was possible for me to read any more books— after all, I had already made my parents broke by forcing them to buy me the entire series of The Babysitters Club. (I wish I was kidding.)

But, despite my early ambivalence to politics, I do remember one landmark moment during the presidency of Old Man Bush (sorry, I still can’t seem to help myself). It was that moment in 1990 when George signed The Americans with Disabilities Act (ADA) into law.

I didn’t know it at the time, but that legislation had been a long time in coming. Many disabled activists had endured many trials and hardships to make that moment possible. Even though I was young, I could still feel the importance of that revolutionary document. On the news that day, I saw folks in wheelchairs at the White House sitting next to the president. I had never seen that before. They were people like me. (Although, in all honesty, they were mostly male and super white. At the time, of course, diversity was an unnecessary concept, not an actual reality. You know, like women CEOs and food allergies.)

The ADA would nonetheless go on to shape the civil rights movement for disabled people all over the world. It was a giant leap forward for accessibility, inclusion and equal-access. But, as amazing as the legislation was, it’s still an imperfect document. It has loopholes, exclusions, and falls short in various areas that could further improve the lives of people like me. So, I can say without hesitation that we still have a long way to go. There are still many barriers that must fall.

Despite this, there has been a movement recently to try to erode away some of the protections of the ADA. Earlier this year, the House of Representatives passed H.R. 620, a bill misleadingly named “ADA Education and Reform Act of 2017.” By removing the reasons for businesses to proactively comply with the ADA, H.R. 620 attempts to chip away at the rights of a disabled person to fight for the removal of barriers to access. It makes it more difficult, and nearly impossible in some cases, for an aggrieved disabled person to seek accommodation. Nonetheless, the shitty bill has moved on to the Senate, where it sits right now.

With the passing of Barbara Bush, it’s made me reflect on that moment when her husband first signed the ADA. Often more vocally progressive than her husband, I’m sure that moment in 1990 brought Barbara much pride.

Now, all these years later, we shouldn’t be looking to scale back the ADA, we should be working to expand it. Time marches forward, after all.

Unless you can’t walk. Because then you might not even be able to get in the building.

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(Old Man Bush signing the ADA in 1990. Photo via Associated Press)

Cripples, Loonies & Richard III

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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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