Messy Drawers, Cassette Tapes & Vladimir Putin

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There’s no right or wrong time to clean out a messy drawer, or that one cabinet that hasn’t been touched since audio cassette tapes were still a thing that people actually used. Don’t mistake this as a diss on cassettes— nothing could be further than the truth. I used to love to rock out to Michael Jackson’s Thriller album on my mint green boom box. In fact, I eventually wore the cassette tape out and had to use some of my piggy bank money to buy a fresh copy at the mall. This was a time when you had to actually drive to the store to buy music— so it was a serious commitment. You had to really want something if you were willing to make your mom drive you 40 minutes to the Vintage Faire Mall to get it. After all, in the 1980’s, the only thing you could download from a Cloud was some rain.

Cleaning out an old drawer or shelf can be a therapeutic experience. I know I always feel better, lighter, and calmer when I can de-clutter something. That’s a fact. Unloading possessions is deeply cathartic. While I know that some people get the same feeling from yoga and meditation, I suspect Vladimir Putin gets a similar zing of excitement when he invades Ukraine and polishes his knife collection.

Sorting through old stuff can yield surprising results, too. Once I found a $20 bill in a nylon fanny pack at the bottom of my dresser. Remember fanny packs? Yeah, I wish I didn’t, either. Aside from being horrified that I actually wore the damn thing, I instantly felt like I had won a prize by discovering the twenty bucks inside. It didn’t seem to matter that it was actually my own money, I was still a Powerball winner in my mind.

A few days ago, I cleaned out an old drawer in my bathroom. Inside, next to a crusty bottle of Johnson & Johnson Baby Powder, and in front of a curling iron that hadn’t been used in over a decade, I found a little box. Inside? My high school class ring! I hadn’t seen the ring in years, in fact, I had forgotten all about it. But, alas, here it was in my hand, smelling slightly of old talc, yet none the worse for wear. It was like finding a $20 bill, only way better. Vladimir Putin probably gets the same feeling when he imprisons dissidents and runs around the Kremlin naked.

So, the moral of the story is this: don’t wait to clean out that one messy drawer in your house. While you may only find old buttons, some matchbooks, and a few dried-up pens, there’s a chance you could discover something awesome. Like a $20 bill, your high school class ring, or— if you’re Vladimir Putin—your secret stash of Soviet-era nuclear weapons.

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If only everyone could be so lucky.

My Christine

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Everyone has that one cool older cousin— the one that just makes you think, “Wow, she’s so rad! I want to grow to be just as cool as she is!” The kind of girl that listens to alternative rock or smooth jazz and wears giant clunky Doc Marten boots heavier than a WWII German Panzer tank.

But, this chick wasn’t so cool that she scoffed at the letters her little cousin wrote to her on bright pink Hello Kitty stationary. No, she wrote back diligently, even though, at the time, the little 12-year-old me was about as cultured and interesting as a really bad episode of Full House (The original one… with the damn Olsen Twins!)

But, it didn’t seem to matter to her. She loved me just the same.

That was my Christine.

Given the age difference between us (8 years), as I grew, so did our relationship. I stopped being the annoying little cousin that talked about Legos and glitter pens. I became a grown-up person that talked about grown-up things. Like why the hell did she think that a kalimotxo was preferable to a 7/7? And even before the ATV wreck that messed up her hand, why on Earth did her handwriting still have to be so awful?

We’d talk current events, books, and how to roast the perfect leg of lamb. We’d strategize ways to castrate our least-favorite politicians while gleefully eating our Aitas’ homemade tripota.

When my mom was diagnosed with the brain cancer, glioblastoma multiforme, she was there each step of the way until the end— hugging, and squeezing me, with a remarkable amount of restraint so that she wouldn’t crush my cripply ribs. If you knew Christine, you knew it was nearly impossible for her to hug with anything less than Superhuman strength. But, for me, she managed.

That was my Christine.

As we were both only children, we shared an extra-special bond. We understood the joys, and sometimes burdens, of such a thing, while relishing in the stories of our Aitas— which we told with great vigor and our very best Basque accents. We commiserated together when our parents wouldn’t let us dye our hair purple, but secretly rejoiced when Christine and her badass-self went out and got her lauburu tattoo.

On that September afternoon, 12-years-ago, when she called me to tell me that the pathology report had come back from her surgery, her voice was strong and steady, like a soldier ready for battle. “It’s malignant. Stage 4.” My heart stopped and then began to pound in a beat that nearly drowned out the sound of her next words… “It’s glioblastoma multiforme.

I knew in that moment what her eventual fate would be. But, I waited to cry until we got off the phone. And I cried. And I cried. And I said a prayer, “Please let her live long enough to see her little boy become a young man. Let her fight it off until then.” And, the fucking lioness that she was, so she did.

Her loss is great, but the life she lived was even greater. She loved fully and deeply— and that gift lives on in all of us. I know there will come a day, very soon, when I’ll reach for my phone to tell her something, but she won’t be there. And my heart will break just a little, once more. But, I’ll hear her voice in my head, “Don’t be sad, caca. It’s going to be okay.

That was my Christine.

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The Waiting Game

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I’m sure some of you may be wondering how my quest for Spinraza— the first treatment for Spinal Muscular Atrophy (SMA)— is faring. Obtaining this treatment isn’t for the faint of heart, it takes will, perseverance and just a little desperation— like climbing Mt. Everest, running a marathon, or taking a job in the Trump Administration.

As I’ve documented here, I’ve been examined by several Stanford doctors, I’ve had DNA tests, and I was approved and prescribed Spinraza… two and a half months ago.

But, I’m still waiting to receive the treatment. If I was a female chipmunk, I could have already given birth to nearly three litters of babies in the amount of time I’ve already been waiting. That’s a lot of chipmunks.

Insurance companies around the country have a wide range of policies on Spinraza. While the FDA approved the medication for all ages and types of SMA, at $750,000 for the first year of injections, it is in the insurance companies’ financial interest to limit access to the treatment. So, they have come up with a wide variety of parameters that they are using to approve/deny payment for the drug. Some insurances say you have to be over 15 years old, other insurances say you have to have less than 3 copies of the SMN2 gene, while some say you have to have over two copies of SMN2. Odder still, some are saying that that they won’t pay for those who already use a wheelchair… or a ventilator… or have a last name that ends with “r.”

I have Medicare, so my insurance situation is even stranger. Medicare is requiring something called “Buy & Bill.” Administering hospitals must purchase Spinraza themselves and then Medicare, in theory, will reimburse it. However, under this current set-up, the financial responsibility/burden is on the hospital. And most hospitals are understandably hesitant to assume that risk because they know there is a chance that Medicare will not reimburse 100% of Spinraza’s cost.

Would you fork out nearly a million dollars for a medication if you weren’t sure you’d get paid back for it? Uhm, HELL no. And no one wants to be the bad guy that sends on that kind of bill to the poor cripples in the wheelchair. I may not be in marketing, but even I know that’s not good PR. So, because of this policy, those of us with Medicare are in limbo. We’ve got prescriptions, but no way to get the drug— it’s like having a ticket to the moon, only NASA is broke and all the space shuttles are in museums.

I’ve been told by folks at Biogen (the distributor of Spinraza), and at Stanford, that talks are happening behind the scenes to figure this out. But, as time goes by, all of us with SMA get weaker.

Being patient is difficult, especially for someone like me that doesn’t have a lot of patience from the start. After all, I can barely wait for a grilled cheese to come out of the pan before I take a bite. I hover over the stove like a drone— and I burn the roof of my mouth EVERY. DAMN. TIME. Who can wait for that melty cheesiness? I know I can’t. You’d think that the resulting soreness in my mouth would deter me from doing it again the next time, but I’m just not that smart.

I’m sure some of you reading this are aghast at the price tag associated with Spinraza— and are thinking that there is no need for the treatment to be that expensive. But, please don’t descend upon the makers of this drug with torches and pitchforks on my behalf.

A specialized medication of this caliber is years in the making. There are many costs that go into creating something like this. So, they need to recuperate what they have invested in it. Further, this isn’t a medication for diabetes or high cholesterol— only a very limited number of people can use Spinraza. So, each dose has to be expensive to make it worth their time. If there is no financial incentive to research rare conditions, like Spinal Muscular Atrophy, then no one would bother doing it. That’s a fact. Kindness and altruism doesn’t make the world go around— money does.

In the meantime, today I received this Spinraza welcome packet from Biogen in the mail. It’s a treatment organizer— like the planner I had in high school that I rarely used. This organizer also came with a decidedly cheap pen— emblazoned the Spinraza logo.

spinrazapicNo offense, Biogen, but it’s 2017. Who writes with an actual pen, anymore? And who carries a planner? No one.

And I’m going to be frank… Don’t be like Clark Griswold’s cheap boss that bought him that crappy gift in National Lampoon’s Christmas Vacation. At $125,000 an injection, you could buy me an iPad, instead.

I’ll be waiting. You know where to find me.

Netflix, Stones & Scones

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When I get bored, or if I’m a little sad, I like watching documentaries on my laptop about old, historical things— like English castles, Russian tsars and evil Nazis dickheads. It’s calming and therapeutic… yet, cheaper than Xanax.

Today, I stumbled upon a documentary about Westminster Abbey on Netflix. You know that big, old Gothic church that Prince William and his wife, Kate, got married a few years ago? Yeah, that building. It’s been around for nearly a thousand years… and it’s THE place to get buried if you are super cool and accomplished. There are kings, queens, princes, dukes and even scientists— like Sir Isaac Newton and Charles Darwin. There are scads of writers, too, including Aphra Behn— who, in the mid-1600s was the first woman to make a living as a novelist, playwright and poet. #oldtimeygirlpower

Westminster Abbey is also the place where the kings and queens of England are crowned. During the ceremony, the monarch sits on this really old wooden chair that was built in 1296. The chair still exists today. It’s survived generations of termites, vandals, and the really fat ass of King George IV, who in the mid-1800s spent most of his time eating large amounts of food and shagging women— all while being addicted to opium. He was a real winner. #momoneymoproblems

The chair was designed to house a special slab of stone beneath the seat. This slab is called the Stone of Scone. It’s important to note that the name has nothing to do with actual breakfast scones, much to George IV’s utter disappointment. Rather, the stone was the seat upon which hundreds of years of Scottish kings were crowned a really long time ago. In 1296, though, King Edward I of England took the stone from the Scots so that it could become the coronation seat for his many future, royal, and sometimes tubby, descendants.

As you may guess, this did not sit well with the Scottish. It didn’t take much to inflame their ire during this time, but stealing their favorite old rock was an easy way to do it. In between eating haggis, playing bagpipes, and drinking whiskey, the Scots stewed about this horrendous act for hundreds of years— even after the two nations joined together under one monarch. The English refused their many requests to have the stone returned— unwilling to compromise with the plaid-wearin’, brogue-talkin’ heathens to the north.

Fast forward 700 years. (I didn’t promise this would be a short story.) On Christmas Day in 1950, four Scottish students broke into Westminster Abbey with a crowbar and snatched the Stone of Scone from beneath the seat of the coronation chair. Okay, snatched might not be the best word for something that weighs 336 pounds. Rather, they dragged the stone out of the Abbey on an old winter coat and managed to secret the slab of rock across the border to an eager, and joyous Scotland.

British police vigorously searched for the stone for three months before the Scots finally relinquished the stone in time for Queen Elizabeth II’s coronation months later. The boys that took the stone were pardoned and details of the investigation were plastered all over the newspapers. Yet, each side still claimed ownership of the Stone of Scone and its history. Eventually a deal was reached so that Scotland could keep the stone for most of the time, except during coronations… every other Christmas, and the 2nd Tuesday of the month. Like a divorced couple’s joint custody arrangement of their 336 pound baby. It was all very complicated.

Strike that. No… no, it wasn’t complicated. It’s actually very simple. England and Scotland, two very advanced nations and pioneers in the development of representative democracy, were fighting over a FUCKING ROCK. A piece of goddamn stone that you can find in any riverbed, on any hillside… hell, even in someone’s weedy backyard.

See, this is why history is so awesome. And this is why I watch historical documentaries to make myself feel better. Because even if I’m having a bad day, a sad day, or I’m depressed about what’s on the 5 o’clock news, I know that we humans have done stupid stuff all throughout our history. The dates and years on the calendar may change, but our stupidity does not.

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Don’t you think?

Summer, Flip Flops, and Tony Danza

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Ugh. As I sit here typing this, the thermometer is registering 95°F. It’s barely May and only 4 days ago I still had flannel sheets on my bed. And now I’m sweating and my jeans are sticking to my ass. Why couldn’t the summer heat arrive gently? Like the slow bloom of a flower… or water dribbling down a clogged drain. Why, instead, does it have to be so blunt and nasty? Like a bull, or Steve Bannon, in a china shop?

I HATE SUMMER! There, I said it. I don’t like the heat, the sun, or even the clothes. I much prefer the styles of the cooler months— my cabinet full of scarves is a testament to that. Plus, I can’t wear most summer clothes, like shorts, because I sunburn in mere minutes. This isn’t dramatic hyperbole. One time I got a sunburned in the time it took to go from the front doors of the shopping mall to my handicapped parking space— which was IN THE FRONT. Yes, I really am that white.

Now that we’re on the subject of summer attire, I also don’t understand flip-flops. They seem unnatural and highly dangerous. Why would you want to walk around on something so unstable? It’s a shoe that’s barely attached to your body. You are one thin plastic strap away from disaster. It’s a good thing that I can’t walk, because if I had to wear flip-flops in the summer, it wouldn’t end well for me. First I’d get a bad sunburn on the top of my foot, then I’d fall and break my nose on the nearest object, like a ficus plant. It would be like an episode of The Three Stooges, only less funny and less Jewish.

If all that weren’t enough, the slapping sound flip-flops make is also decidedly unappealing. Do you intentionally want to sound like a walrus flapping their hands together? Because, I hate to be the one to say it, but you really do sound like that.

Anyway, thankfully I have air conditioning to help me during these trying times. It’s currently humming in a soothing way that reminds me of those noise-canceling machines that they used to sell at Bed, Bath & Beyond next to the display of soda-making kits that NO one ever buys. The same ones that have been on sale since 2005. If you are thinking of buying one, you might want to reconsider; I’m sure those flavored syrup pods expired back during the days when Bush Jr. lived in the White House.

Those were simpler times, though, weren’t they? We didn’t have a president with orange skin and hair… and Michael Jackson and Whitney Houston were still alive— so we could listen to their music without the sad pang of nostalgia. Those also were the days before the word taxi had been replaced by Uber. Before long the nerdy folks at Oxford will just drop that word from their dictionary entirely… and a hundred years from now little children won’t even know what a taxi is, let alone that it was yellow and usually driven by strange foreign men with accents— or Tony Danza.

IMG_3914It’s only May, though, so I better get used to this heat. If you need me, you can find me sitting in front of the fan, grumbling… and not wearing flip-flops.

Being Sick and Finding Superman

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The last few days I’ve been battling an infection of some kind— with a sore throat, cough and fatigue. Rest assured, I’m definitely on the mend now, though, thanks to a round of antibiotics, and my nebulizer and Cough Assist machines. Three cheers for respiratory gadgets!

Even though I’m an avid reader (I’ve been known to read 50 to 75 books a year), when I’m under the weather I actually don’t do much reading at all. Rather, I like to sit like a hacking, sniffling lump while I watch long movies. And when I say long, I mean really long movies. The kind of movies involving far away wars, people who sing, Nazis, nuns and, of course, Julie Andrews. If you haven’t gotten the hint that I’m talking about The Sound of Music, I’m not sure if we could ever be friends. I’m serious. That movie is the best movie of all time… I say that with utter certainty. If you dare to disagree me with me, I will run you over. This is not an empty threat.

Anyway, I love to watch this film when I’m sick. It’s long, too, which makes it an especially good choice for long afternoons of lazy, snuffly sickiness. Plus, if all that weren’t enough, Captain VonTrapp is super dreamy. When I was young and home sick from school, my mom used to pop the movie in the VCR. It would keep me occupied, and out of her hair, for at least 174 minutes. Any mother would tell you that this fact alone would make that VCR cassette tape worth its weight in gold. And, as soon as I was old enough to operate the VCR remote control, I would repeatedly rewind the tape to watch the marionette puppet scene over and over again. If you don’t know the scene I’m talking about, you haven’t seen this movie. And, if you haven’t seen this movie, well… you know what will happen to you next.

I think it’s safe to say that I have seen this movie over 50 times. This is not an exaggeration. It’s at the top of my list of Movies to Watch When I’m Sick. Other flicks on the list include: Mary Poppins, the Harry Potter movies, musicals written by Rodgers and Hammerstein, and any film starring a Hepburn (either Audrey or Katharine).

This week, I needed to find a long movie to make this sickness pass faster. There was a free preview of HBO, so I checked out the guide on my television. I found Batman v Superman: Dawn of Justice… which was an impressive 183 minutes long. This was doable. I’m not generally a fan of superhero movies, but I have a decided weakness for Henry Cavill— the hunk that plays Superman. So, it seemed like a good choice.

But, it wasn’t too far into the movie that I began to doubt the merit of my selection. Through the fog of antibiotics and decongestant, I watched car chases, tall buildings being felled, and two men wearing capes fighting each other. This last one had me nearly turning off the television. Batman and Superman are both good guys. Under no reasonable storyline would they be at odds. End of story. With a groggy voice, and no one around to hear me, I actually yelled at the TV (okay, maybe I squeaked), “WHO WROTE THIS MOVIE, ANYWAY? WHAT IS EVEN GOING ON? WHY AM I WATCHING THIS? HOLY SHIT, HENRY CAVILL IS HOT.”

Next time I’m sick, I’ll just stick to Julie Andrews.

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