Monday, August 11, 2014

Doing it Wrong

Sometimes I see something, read something, watch something that will simply refuse to vacate my thoughts. It happened again this weekend, when I watched the documentary Pink Ribbons, Inc. It hasn't stopped bouncing around my golf-coursed brain.

This thought-provoking movie is currently available on Netflix. Sometimes people ask what they can do to help me. Would you like to know how you can help? Do me the favor of investing 1.5 hours to watch this film before you send your hard-earned money to a fundraising organization. Because we are doing it wrong.

Please understand, I am not trying to deny the good intentions of the organizations raising these funds or the people donating to them. There is nothing wrong with us wanting to do something to help someone else. I know that helpless feeling when it seems that there is nothing you can do for someone. We want to take action. To help out. To show support. Anything. Because someone we love is suffering. And there is no known cure. Or no known cause.

Thankfully, I don't have Stage 4 breast cancer that has metastasized to my liver. I am not trying to prepare myself for my impending death. I am in no way comparing my silly little brain lesions to having my boobs cut off while I simultaneously poison the remainder of my body in an attempt to halt tumor creep.

I don't have breast cancer. I am lucky enough to only have MS. Which is a cakewalk compared to any stage 4 cancer. Because there is no stage 5.

There is one thing that I pulled out of that amazingly educational documentary, which applies to MS as well as cancer. And it is this: we are using the wrong words. We are chasing the wrong things. We are funding the wrong science.

Pink Ribbons, Inc. illustrates how corporate America has hijacked the most predominant symbol of the disease of breast cancer. That pink ribbon is everywhere. Ford Motors, Avon, even the NFL have all participated in the awareness campaign.

Aside—Is it a coincidence that the NFL started telling their players to wear pink cleats at around the same time as they were having PR disaster after PR disaster, usually involving some misogynistic act? Just askin’.

I have, myself, participated in the pink ribbon campaign. I know that, given two similar products, I have always purchased the pink one in hopes that a little money goes to the Komen Foundation. And, in fact, the money DOES go to Komen.

But they are spending it wrong.

Since its inception, The Susan G Komen for the Cure foundation has raised around $1.5 billion for breast cancer education, research, and health services programs. That would be billion. With a B.

Can you spot the problem? I couldn’t. Even though it was staring me in the face. It’s right there in the name of the organization. While we are all busy running for a cure, hardly anybody is trying to chase down the cause.

Of all that money, only 10% has been dedicated to researching the causes of breast cancer. And far less than that has been earmarked for environmental cause studies. In the 1940s, 1 in 22 women would experience a form of breast cancer in their lifetime. Today, it is 1 in 8. What has changed? Could it possibly be the environment we all live in? These days, we are all breathing polluted air, ingesting chemically-altered foods, and drinking from plastic water bottles. Grandma didn't do any of that.

Interestingly, MS is on the rise as well. Especially in women. It used to be that for every man diagnosed with MS, two women were. Now the ratio is 1:4. And the rise of pediatric MS diagnoses is alarming.

The biggest predictor of both MS and breast cancer is this: being a woman. I'm not going to go into this in depth—at least not in this post—but if you want to know more, Google “Hazards of Environmental Estrogens.” Just don't read it right before bed. It will give you nightmares.

In capitalist countries, there is a growth of organizations with the main function of raising money in the name of a disease. And the message that these organizations are shouting is almost universal: Find a Cure.

But these are the wrong words.

We keep using the wrong words. I understand the urge to dress in ribbons and tutus to run in a group of like-minded crusaders in solidarity of “warriors” and “survivors.” And there is no denying the enormous amounts of strength and bravery that any person diagnosed with a serious disease must summon.

But here is why the Survivor Warrior is the wrong image to convey. It implicitly relays the idea that—if people try hard enough—they can beat This. What ever the This is. It tells people that they must be cheerful, optimistic, and strong. It leaves no room for the very human emotions of anger, sadness, and fear. We say that people who die from their disease have “lost the battle.” As if they just didn't fight hard enough.

Calling people fighting a disease “survivors” suggests that the disease is somehow their problem to conquer or their consequence to live with. It is little more than sleight of hand. Quick! Come watch us give out awareness ribbons from the corporate-sponsored booth. Then you won't find yourself examining all the things that are outside your control.
We all need to stop asking to find the cure. We need to find the cause.

So much energy, research, and money is going into keeping us diseased people around for a longer amount of time. Tamoxifen, Avonex. Tenofovir. These drugs keep us Walking Diseased alive. They slow down the progression of our illness. But keeping us alive is not the same thing as helping us live.

Since the Reagan administration, our government has been shifting the responsibilities of our health and welfare to private entities. Corporate America is now in charge of making you well. The immediate and enduring result of this is the monetizing of a cure for diseases, not the research of disease prevention.

These corporations really do want to make you well. Or at least better. They wouldn’t want you to be completely healed. There's no money in that. And they certainly wouldn’t make a profit if you had the audacity to never get sick to begin with. Not when they can squeeze 10 more years of medication costs from you at $1200 a pop.

Do I sound cynical and jaded? Good. Because I am.

In 1955, Jonas Salk eliminated polio. With one shot of vaccine, costing about $2 per child. He didn't apply for a patent for this medication because he wanted it to be easily available to every family in the world. In choosing not to patent his invention, Jonas Salk forfeited an estimated $7 billion. With a B.

Can you imagine if Dr. Salk was working today for one of big players in pharmaceutical research? With the board members of those research groups representing pharmaceutical manufacturing, chemical production, and energy industries? We would still have a polio vaccine, I am quite sure. But it would cost $250 and need to be updated yearly for the rest of your life. Thank goodness we all have universal health coverage, right? Oh, wait...

Somewhere between 1950 and 1980, our society swerved off course when it came to taking care of the well being of each other. And now we need to make a course correction.

Instead of dressing up in silly t-shirts and painting ribbons on our faces to walk three miles with the purpose of spreading words and finding cures, we should all—every single one of us—start painting signs and marching on Washington. We should stop buying pink blenders and start educating ourselves about GMO foods fertilized by Syngenta. We should stop mailing in yogurt lids and start mailing furious letters to our Congress, demanding they make laws forbidding companies like Eli Lilly pharmaceuticals from simultaneously profiting off cancer drugs and the synthetic hormone given to dairy cows, which is known to be carcinogenic.

Yes, they really do that. The Breast Cancer Action Group calls it Milking Cancer.

Arg! What can we do? What do we do? How can we put this crazed horse back in the barn?

When we are donating money to a cause, our hearts are in the right place. I know they are. But we are doing it wrong. We do need to join together. But not to celebrate or support. We need to become a single voice, demanding answers. In the 30 minutes it takes to run a 5k, you could email your two Senators and your Representative. Tell them that we are nothing as a society if we cannot do a better job of taking care of one another.

Here is how to find your congressman’s contact information:

We all need to make sure that the money we collectively raise goes to the correct research. Don’t hand your hard-earned money without demanding to know what your investment will yield. We can all act to make sure that the research we are funding is doing it right.

Tuesday, August 5, 2014

His Greatest Day (So Far)

Did you see this news story?

I love this story. I dig this kid. But  I’m sorry to tell his parents that—I fear—he has caught the Wanderlust.

9-year-old Chris Villavicencio is going to be the kind of person that needs to explore the world. Chris has had the first taste of the freedom, the exhilaration, the satisfaction that only traveling alone can give you. And once you get a taste of that, the yearning for another fix very rarely goes away.

And I know that Wanderlust well. That feeling of setting out on your own and exploring the world. All by yourself. And having the best day ever (so far).

Some people think it is quite weird that I love to travel alone. It really is my favorite way to travel. It’s not that I don’t like to share experiences with the people I love. Of course I enjoy that. I love seeing the kiddos run on a tropical beach. I love cooking s’mores with my sisters. But traveling alone feeds my soul in a way that I have yet to find a replacement for.

I love to be able to go where I want. I love to take detours. I want to get lost. I love to pipe an audiobook through car speakers as I am driving down a road that may just lead me to the world’s largest ball of string or recently discovered dinosaur bones. I love stopping at those metal signs dotting the highways, telling us that something important happened at that exact spot. I am more than willing to evaluate anything edible that claims to be “the world’s best.” Because, sometimes, it really is.

Anyone who really knows me shouldn’t be entirely surprised by this. My family likes to remind me that, since I was a baby, I liked to be on my own. My mother recounts stories of how she knew when I was sick because it was the only time I would let her hold and cuddle me. And my first week of Kindergarten is the stuff of legend.

My mother sent me off to school along the route that we had practiced walking the week before. The crossing guard introduced himself, offered me a Tootsie Roll (“It’s ok to eat because he isn’t a stranger,” said Mom.), and ushered me across the street. But somewhere between that crosswalk and the school doors, my imagination was captured by this giant open field. Huge piles of dirt. A stagnant water pond that with tadpoles swimming in it. The bones of some animal I could not identify. That field demanded to be explored. It was much more exciting—and, I still contend, much more educational—than some stupid Kindergarten class.

Well, that went on for an entire week. I would wave goodbye to my mother, cross the street, and head straight for the field. Then the school called my mom to ask her if I would be attending school that year. I can only imagine the incredulous look on my mom’s face as she was being told how I had not been in class for the entirety of the last week. I can’t quite remember her nonplussed tone of voice when she asked me how I was liking my teacher (who I had yet to meet). But I can almost hear it. It wasn’t until I became a mother myself that I truly knew what that fear-induced-sudden-drop-of-all-internal-organs feels like.

That may have been the start of my Wanderlust.

And, unfortunately, I think I am still giving my mom that same stomach pit. Sorry Mom. My family doesn’t really understand why I would ditch them at the beautiful Cancun resort to climb on a hot bus to see Chichen Itza. For me, hearing the magical acoustic qualities of a 2000-year old Aztec pyramid trumps a pina colada by the pool any day.

And it didn’t surprise my family one bit when I announced that I would be spending my vacation this year on a road trip to try to see the Northern Lights. This October, I am packing a small carry-on bag, flying to Minneapolis, and heading towards the rim of the Arctic Circle. Maybe I will see the wild polar bears with their cubs. Maybe I will see Aurora Borealis. And if I don’t? I will try to again on another great adventure. Finland, anyone? And don’t worry, guys. I will totally be blogging this upcoming adventure.

I have always needed to travel. I remember the thrill of getting my first passport. And using it on my first adventure outside the country. And having it stamped as I walked off the plane in Milan.

My Italy story is a tale of the Davids.

After I graduated from college, I had the unique opportunity to take a 3-month-long trip to Italy. I was seeing a guy that was in the Air Force and stationed at an airbase outside of Venice. Because there were many more people stationed there than there were base housing units, the Air Force found small apartments in a town called Portofino to cover the housing gap. With my guy settled into one of these apartments, I could not only crash there, I could come and go as I pleased. And that was exactly what I did.

My Grandpa David really understood me. A retired doctor who could never satisfy his thirst for knowledge, he introduced me to the ideas that the world was meant to be seen and that no home should have anything less than a wall full of books. In a lot of ways, he understood me more than my parents or sisters did.  He was the one that heartily encouraged me to go seek adventure in Italy. He was the one that warned me that being in Florence would be a life-altering experience. It was his favorite place on Earth. So far.

He was right about Florence.

Florence was where I learned that there is truth in clich├ęs.  My breath was very literally taken away when I turned the corner of the Galleria dell'Accademia and saw David under the natural light of the glassed dome 20 feet above him. It was a gloomy late fall day, and rain speckled the glass. The storm clouds caused the light to become soft and diffused in the great hall, built in the 16th century.

It was a magical moment. It seemed like the whole city was taking cover from the storm. Tourist season was over. The usual bustle of the street market was calm. And David and I were completely alone for 5 minutes.

Aside— When Michelangelo was 26, he was given a block of marble—rejected by many other artists—from which he bore what is arguably his finest work. Let’s all stop for a moment and think about what we were doing when we were 26 years old. At least I can say this: By the time I was 26, I had seen the small stone David carried in his delicately-veined right hand.

As I was leaving Florence, I purchased a postcard of David and mailed it to the tiny town of Toquerville, where David had one of the largest mailboxes available in that tiny post office. He received more correspondence in a week than the rest of that rural hamlet received in a month.

Grandpa David received my postcard from Florence. He died only a few weeks later, as I was on the plane traveling home. But I got to tell him that he was right about Florence and right about exploring the world.

Dr. David knew that there was no cure for Wanderlust. Young Chris Villavicencio, take it from me. You can’t fight it. So you might as well embrace it.

Wednesday, July 23, 2014

42 + 100

Tomorrow is my birthday. And this is my 100th blog post.

I have been writing this blog for exactly one year. Yet, today, I find myself at a loss for words. Which is—let’s be fair—an unusual state for me. I’ve been staring at this blank page for about 2 hours now. I keep checking in on it. So far, I’ve got nothing. I type, I delete, I put it aside.

This one seems like a significant post. A marker. A representation of a year gone past. And I've got nothing new to say. So, instead, here is my Prime Year of 41 in review:

The Good

I got brand new skates.

I found a new appreciation of my body.

I added some color to my life.
(Sorry this isn’t filed under “The Lasts”, Dad…)

I found some heroes.

The Bad

I started injecting myself with Avonex.

I became discouraged.

I felt so sad.

I nursed a broken heart.

I fought depression.

I embraced my pessimistic side.

The Ugly

I got my ass kicked in Fresh Meat practice.

I lost any tenuous grasp on faith.

I found new enemies I had to battle.

I had my first MS relapse.

I endured more MRI procedures.

And the Beautiful

I found great beauty in needles.

I found some peace.

I figured some things out about myself.

I allowed me to think of myself as nothing less than spectacular.

This Prime Year--Year 1 A.D.--has been filled with many firsts and many lasts.

The Firsts

(I did a crossover!!)

The Lasts

It’s been an amazing, crazy, emotional, beautiful Year 41. And as it draws to a close, I am keeping this in mind: 43 is a prime number too…

Thursday, July 10, 2014

Ten Lessons

Sometimes, I just coast. Just complete my daily tasks and rest up to do it again the next day. Brush my teeth, sit through a work meeting, feed something less-than-nutritious to Kidlet, put a dish in the dishwasher. Lather, rinse, repeat.

And coasting is just fine sometimes. Coasting is my favorite part of a bike ride. To coast is to reap the benefits of working up to traveling speed. Coasting lets you gear up for the next big hill you need to climb.

It’s not that life is tedious or mundane (OK, of course it is now and then). It’s just--sometimes--getting out of bed in the morning, having nothing of significance happen during the day, and getting back into bed that evening is something I have to consider a success.

Coasting is great. But this wasn’t a week of coasting. It has been an educational week. I learned a lot. It was a lot of pedaling and shifting gears. Here is what I learned:

Lesson 1: College doesn’t make you smart. And smart people don’t always need college.

I knew this to be true in an academic sense (excuse the pun). But this week, I was schooled (excuse another pun! What is wrong with me!) by a musician, a person that knew a lot about some incredibly interesting things. So deeply thoughtful, so interestingly philosophical, so goddamn creative. The Musician is someone to know.

He doesn’t have a university degree. But he has explored more of this world than 90% of the alumni of any school. He knows things because he has seen things. He has sought things. 

I have known some incredibly educated people in my lifetime. And I have never actually experienced the following strange phenomenon. Not once.

The Musician and I were talking about the origins of the universe. (I don’t do boring date-talk about reality TV or commercially-exploitive sports tournaments.) He was telling me about a stunningly beautiful mapping of the universe.

And that is when the something amazing happened. He was talking about the universe expanding so far and wide that it will--one day--collapse back onto itself, condensing into this tiny, infinitely dense dot of matter. Which, when no longer able to contain its energy, will explode in a big bang--The Big Bang--once again starting the cycle of the universe.

Musician: Every society and every religion that has ever existed on Earth has had this knowledge of recurrence of time. Time repeats.

Me: We will exist in this very life again? Living through these exact events again, and again. Forever. I think Nietzsche referred to time as a flat circle.

Musician: I have no idea. I never read any Nietzsche.

My point is this: The Musician didn’t read a book in a Philosophy 101 class to learn this theory. No one taught him the idea of flat circles or the repetition of time. He just… got there. Under his own power. 

I’m willing to bet that old Friedrich never took Philosophy 101 either.
Aside: I will neither confirm nor deny that the conversation noted above was enhanced by any herbal supplements… The good news is I get to smoke that great stuff again in a few billion years. I mean… you know… if there was something being smoked…

Lesson 2: People in Brazil care about soccer in ways which I believe to be unhealthy. Did you see and that sturm and drang? I mean really. I only cry like that for really important things. Like a performance of The Lion King or when I think about how much money that idiotic Shades of Grey shit made. Well, now I am crying because that terrible writer is going to make all that money all over again in a few billion years.

Lesson 3: Never tell your sister about the Google news alerts you have set up. For some reason, she will mock you for keeping an eye on all things related to Roller Derby, MS, and Atheism. “Really?” she will ask. “You need to see it as soon as news breaks that there is still no proof of God?” Smartass sisters. Sheesh.

Lesson 4: Silver linings are abound.

The next person that tells me to count my blessings is going to get punched in the ear. Be forewarned. Couldn’t be helped. It was predestined when it happened the first time billions of years ago.

I know I am blessed. I know I am lucky. I know that I am not really want for anything. Not really. Clean water comes out of my tap. A roof shelters me from storms. Both my child and I have shoes, vaccines, and education.

And I am thankful. Thankful for my wonderful Kidlet. My (mostly) good health. My job. It actually feels a little perverse and gluttonous to count up all these blessings. But somehow, it feels differently to count silver linings. Maybe it is just the nomenclature of the phrases. Blessings implies something being bestowed. Linings implies something being unearthed.

Blessings are given. Silver linings are earned. To find a silver lining, you have to wade through all the shit. To see the silver lining, you have to process and learn. It is a joy to uncover a beautifully gilded lining, birthed from pain.

Maybe I am splitting hairs. But I think we should all stop counting blessings and start mining for some silver.
Lesson 5: Someone needs to stage a telethon or fun run to raise funds to combat the effects of summer boob sweat.

Lesson 6: Being called “pretty” is a charmingly sweet, endearing compliment. I get adorable, gorgeous, hot. I mean, just look at me with all that boob sweat, for hells sake. Who wouldn't think that was super hot? Being called sexy is great. But when I got called pretty this week… butterflies. (Doesn’t mean you get to stop calling me sexy.)

Sometimes, I catch myself being optimistic and sunny. Which—let’s be honest—is not my baseline condition. This good cheer is often caused by a boy. It is also fair to point out… often when I am feeling dour and cynical… that is also caused by a boy. 

Life can be really confusing. So I will take the butterflies when I can find them.

Lesson 7: Holga makes an iPhone case with photo filters!!! How did I not know this??? 

Lesson 8: There is nothing that isn’t made better with balsamic vinegar. Or pesto. Except maybe ice cream (and the jury is still out about balsamic for that one).

Lesson 9: I really, really hate that I will never again get to read Harry Potter for the first time. Or Bag of Bones. Or To Kill a Mockingbird. But, I love that I will never again have to read Ethan Frome.

I do, however, get to watch my kid read my favorite books for the first time. Kidlet has only this past year discovered that reading can almost be as fun as mindlessly staring at an iPod screen for three hours. After he finished his last book (the one having to do with Zeus’s summer camp for weirdos, or something like that), he asked me what he should read next.

Angels sung. Confetti was tossed. Vodka was drunk. Oh, wait… the vodka part really had nothing to do with it. Moving along…

I had been waiting for that question for ten years. What should he read? What shouldn’t he read? I have a stack of books for him to curl up with. I started him with one of my favorites: The Westing Game. Murder, mystery, puzzles, money. I knew it would be right up his alley. It was so amazing to watch him turn pages of a book that I so love. Now… What next? So many to choose from!
Lesson 10: The greatest feeling in the world is when Kidlet says this: “You are so much funnier than my dad.”