One year ago, today, I had my very first spinal injection of Spinraza— the first-ever FDA approved treatment for my disability, Spinal Muscular Atrophy (SMA). Life was a lot different one year ago. First of all, I was worth a hell of a lot less money at that point. My spinal fluid didn’t have 6 vials of super-sonic, super-expensive Spinraza floating around inside of it. You know, the way the miniaturized Dennis Quaid floated through Martin Short’s body in the 80s movie, Innerspace? One year ago, I was a body that was decidedly pre-bionic. Dennis Quaid’s tiny spaceship would not fly out of my nose if I sneezed. Now, however, I wouldn’t be surprised if my boogers had diamonds inside. Yes, I’m that pricey now.
As I have shared here previously, it was a long, hard-fought battle to gain access to this drug, and I’m lucky to have a spectacular medical team at Stanford Neuroscience that helped to make this possible. I wish I could say that all adults with SMA have such outstanding advocates for care as I do. But, we still have a long way to go to make this current treatment, and all the upcoming treatments coming down the pharmaceutical pipeline, available and accessible to all those living with my rare, genetic condition.
But, my Spinraza journey didn’t end at the point of that lumbar puncture needle one year ago today. Rather, it really had just begun. Given the complexities of getting the long needle through my crooked, and fused anatomy, each injection since that July day has been a tiny battle of wills. A mental and physical game where I prepare like a seasoned warrior. A soldier that knows that the upcoming battle could be a smooth victory just as easily as it could be a giant shit show. You know, like a Trump/Putin press conference?
However, these hardships (and there have been many!) have been worth it. In the 365 days since that magic vial’s liquid have begun to do their work, I have had measurable improvements. Given that this neuromuscular disability is progressive, even merely slowing or halting the natural deterioration is a victory. To have improvements, like I have seen, is more than I could have hoped to achieve. Especially as an adult with SMA. I had never thought I’d live to see a treatment that could help me. It’s hard to mentally process… to put your brain around. You know, just like it’s hard to process pickle-flavored ice cream, self-driving cars, and why the hell we Americans can’t figure out the metric system.
I look forward to what the future holds for my Spinraza journey, yet, I eagerly anticipate what medical science has in-store for those of us, of all ages, with SMA. I’ve heard that there are more treatments currently in the trial and research phase. Perhaps, one day, I will have additional cause to celebrate.
Until then, if I sneeze, please excuse the diamonds.
For more updates, don’t forget to subscribe to my blog in the sidebar.
(originally appeared today in my newspaper column in The Patterson Irrigator)
I have a story to share. A story that I sincerely wish I could tell you had not happened in this town. In the diverse community of Patterson that I love so very much. But, this story is worth telling as a reminder of the danger of extremes— of intolerance. The dangers of harsh words, snap judgments and, at the core, racism.
This story wasn’t mine to tell, but I asked permission from the young woman at its heart— who is a long-time and very dear friend. And she agreed to let me share this with you all. She knew, just as I do, that this is an important lesson— especially during these politically divisive times. For, while we know things like this happen in other parts of the country (just a glance at the news confirms that!), we can’t pretend that something like this can’t (and doesn’t) happen in Patterson.
My friend is one of those extraordinary friends— the kind that are always there for you when times are tough. Like me, she’s a graduate of Patterson High School and a homegrown California girl. We both have an affinity for Netflix, tacos and perfectly-made caramel macchiatos. She’s much more altruistic than I am, however. Instead of writing jokes about world dictators or all the other lame things I write about, she has, instead, worked hard through college and hospital rotations to become a licensed nurse. She’s a doer… and I’m just, well, a person with an overused vocabulary. The world needs more people like her— that’s for certain.
On a recent Patterson day, she was walking up the sidewalk to the City Hall to pay her family’s utility bill. Suddenly, a middle-aged Caucasian man spotted her and, out of the blue, began assaulting her with a barrage of hateful words. While most of the phrases he used are not suitable for print in this newspaper, here is the edited version: “Hey wetback! Yeah… Go back to Mexico. You, and all the others, need to go back to Mexico. Ha! I bet you can’t even understand what I’m saying right now.”
When my friend told me the next day what had happened, right in our little town, I got so angry that I felt blood begin to pump in my ears. But, once again, proving that she is a far greater person than I would have been, she didn’t engage with her harasser. While I would have tried to run him over with my wheelchair, she instead ignored him and went about her business. Her decision to ignore was the wise and prudent choice. But, it was a choice that she should have never had to make. It was an experience that no one should have to endure.
But, she told me that the most upsetting part wasn’t that it had happened— she knew that things like that happened to other people every day. Rather, it was that it happened in her own hometown. She admits that perhaps it was naive, but she had never imagined that something like that could happen here in Patterson. I think I must be a little naive, too, because I never thought it would, either.
But, it did. The question is, as a society and as a community, what are we going to do about it? For a person to shout such abuse in public, it means that he feels validated enough to do so. He feels like it’s just, and right, for him to say such vile things. And, in the weeks, months, and years before taking such an action against an innocent young woman, he’d been building up to that point. He’d been listening to pundits on the radio, or television. He’d been making comments to friends, coworkers, and neighbors. Comments that perhaps met with agreement, or disagreement, even if it was only silently or passively so.
But, such attitudes don’t exist in a vacuum. They don’t sprout out from the ground like a wild turnip. Society nurtures them. Allows them to take root and grow. So, we must all take responsibility for our role in that.
We must be better. Do better.
It all begins with us.
Summer is now officially here. For the next three-odd months, we’ll have plenty of time for backyard barbecues, fresh locally-grown produce, and oodles of opportunities to get a sunburn. I am one of the lucky ones that gets burned by simply thinking about the sun. For example, just reading an article in National Geographic about solar radiation is enough for me to get a second-degree burn. I wish this wasn’t just hyperbole.
While my pasty, sensitive skin is a major reason why I dislike the summer, the heat we experience in Patterson is the primary source of my disdain. It gets crazy-hot here. And, for someone in a wheelchair like me, it’s just not pleasant. Frankly, it majorly blows. My black-seated electric wheelchair is like a damn beacon for heat— the summer sizzle zeroes down upon me like a missile. You know, like one of those nuclear warheads that Kim Jong Un promises to get rid of but everyone knows that he never will? Yeah, just like that.
The wheelchair also traps heat—once it enters the perimeter of my seat, it just doesn’t fucking leave. It’s like living in one of those Insta-Pot pressure cookers that everyone has been raving about for months. If I’m in my wheelchair out in 100° weather, it won’t be long before my ass turns into a perfectly-cooked pork tenderloin. I wish this was an exaggeration, too.
Despite all my negativity about this season (of which I have a lot, as you can tell!), there are some redeeming things about this time of year. First of all, I like that cold and flu bugs go into hibernation in the summer. As I’m a germaphobe, this is a big relief. I fear getting sick the same way that some people fear a giant asteroid hitting the Earth at 25,000 miles an hour. And, no, I’m not being dramatic. If you’ve been following my writing at all, you shouldn’t be surprised by this statement. So, YAY to summer! It’s definitely wonderful that at this time of year I don’t have to worry about catching the flu while shopping for laundry detergent. It makes the idea of having clean clothes way more enticing.
While this is a major reason I tolerate the heat of the summer, the biggest redeeming factor of this season? All the yummy local produce that becomes available. We are so fortunate to live in one of the most fertile agricultural regions in the world. Our markets burst with wonderful things to eat. So, take advantage of it. Buy locally-grown produce when you can. Visit farmer’s markets. Enjoy all the things that truly put Patterson, and this region, on the map.
It will make these long summer days all the more tolerable.
So, stay cool, stay healthy, and happy summer!
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!)
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:
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!
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.
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.
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!