Talking Zebras with Allure's Beauty Director

Jenny Bailly and I at Saks 5th Ave

Last Thursday, I met the charming deputy Beauty Director of Allure magazine, Jenny Bailly, at Saks Fifth Avenue's 3rd annual Beauty Editors Day, sponsored by "Look Good Feel Better" - an organization that provides free cosmetics and makeovers for women with cancer.

I first became involved with Look Good Feel Better as a patient at Sloan Kettering. Two days after my right hemicolectomy surgery for carcinoid cancer, my mom came into my hospital room and giddily announced: "I signed you up for a makeover! The nurse will come get you in an hour."

At the time, the last thing I wanted to do was "glam up" my hospital gown and medical tubes, but the incredibly sweet and caring beauty volunteers of Look Good Feel Better not only made me physically appear "less sick", but also gave my mom a memorable non-cancer moment with her daughter. (CLICK here for my original blog post about my hospital makeover.) It was amazing how a little mascara made me feel more like a "normal" girl and less like a walking war.

Fast forward four years.

I was flipping through Allure magazine, and stopped dead in my tracks when I saw the below editor's note:

I couldn't register fast enough.

The day of the event, I was more than nervous - after all, there is nothing about me that screams high fashion; but as soon as I met deputy Beauty Director Jenny Bailly at the Dior counter, her genuine warm welcome immediately set me at ease. I told her how special this event was for me personally, and shared my carcinoid story. I even gave her a carcinoid zebra-ribbon fashion lesson!

We continued chatting for a while and discovered that we were both English Literature majors, which took us down two similarly circuitous paths - hers leading to the beauty industry, mine to teaching. We also discussed the immense social media pressures facing today's teenage girls, and I posed a question: if she could go back in time and give her 16-yr old self some advice, what would it be?
"Don't be afraid to play. Makeup is supposed to be fun... I wish I hadn't played it so safe when I was younger." Bailly wistfully answered.

I thought that was great advice; we ran through a short list of celebrities and agreed actress Lupita Nyong’o embodies an enviable free spirit when it comes to style, and is a wonderful fashion role model.


Like Lupita, Bailly is constantantly experimenting with the latest trends and beauty advancements. She explained that as Beauty Director, she receives literally crates of products to try out. In fact, sometimes she has to "split" her face down the middle and apply different products to each side - just to get through it all.

I asked her if the job ever became tedious, and she was quick to respond, "I never get tired of it. I still love it." Then she flashed me a smile that mimicked what a kid would look like after getting a job at Willy Wonka's Chocolate Factory.

After a thoroughly delightful conversation with Bailly, I was whisked to the other side of the Dior counter for a makeover. Several of the Dior ladies said they overheard my cancer story and wanted to tell me how fabulous I looked.

Really? I don't consider myself "fashion forward". Every piece of make up I own can fit into a ziplock bag; when I force myself to get a pedicure, I correct papers so the time seems "less wasted"; the few occasions I've updated my wardrobe in the last 6 years have been primarily out of shear necessity because of weight loss...

Bailly's advice sparked an epiphany of sorts - I have been so busy putting on a brave face for others, that I had forgotten to throw on a bright red lipstick or neon green eyeliner once in a while - just for me. Bailly inspired me to finally take the time to create a personal style that makes me feel confident and feminine. After all, this blog is named after style icon Jackie-O, who captivated a nation through her signature look and seamless elegance.

Every time I share carcinoid information with people in the media, I become a little more hopeful that someday the mainstream medical community will adopt this orphan disease. In the meantime, I'm going to head over to my local Sephora and frolic among the candy colored, rainbow shades of liquids, powders and lacquers... because for the rest of the summer this girl is banning beige.

  

Posted with Blogsy

Yea, I'm THAT Viewer... aka no longer one of Bethenny's girls

When I was a kid hanging with grandma, anyone who crossed her was subject to "a nasty letter." These were not empty threats. I can still see her clearly, sitting at the kitchen table ... Laying down beautifully scripted letters onto one of her many charity adorned notepads (you know - those long skinny pads of paper that come with donation envelopes)... a seemingly unending roll of stamps within arms reach. Her words were elegant and biting; she was a school teacher after all.

Fast forward to 2013... Now even lazy, inarticulate people can write "nasty letters" through social media. However, many of these "joe-lunch boxes" fail to put any thought into composition, audience or purpose. These days verbal tourettes seem to have replaced constructive dialogue. Well, this week I took a page outta grandma's play book, and fired off an angry message myself to the talk show host Bethenny - of all people.

My Bethenny Facebook post lasted maybe 5 min before it came down ... But I finally got what grandma has known for so long - speaking one's mind to "strangers" whom need reality checks is a cathartic experience worth the effort. My Facebook post was about the nauseating twitter backlash to the new Miss America, and Bethenny's failure to address a serous epidemic in this country: racism. ( See below)

Racist Tweets Against Davuluri:

 

My Facebook Post on Bethenny:

 

Remembering JFK on the 50th Anniversary of His Assassination

"When written in Chinese, the word 'crisis' is comprised two characters. One represents danger and the other represents opportunity." - JFK

grandma on her 91st birthday reading the Jackie-O book I gave her

Friday was the 50th anniversary of JFK's assassination.  

Kennedy's life of service started in the Navy, where he won a Medal of Honor for his heroic conduct as commander of a ship that was sunk by the Japanese in 1943. Although injured, Kennedy actually swam to 2 different islands while towing a badly burned crew-member by clenching the man's life jacket strap in his teeth. JFK's leadership secured the direct rescue of the surviving crew members. Kennedy was 26 yrs old at the time; he would be killed 20 short years later.

My grandfather served in the air force in WWII. My father graduated from West Point and was stationed in Berlin. I was born on a military base, and when I was 18, I secretly eloped with a US Marine (and divorced Kardashian style -16 mths later). You can say I grew up in a military trifecta. They say "alls fair in love and war" - but whomever said that, never experienced the losing side of either.

Those who sacrifice their lives to serve our country embody the best parts of humanity's capacity for courage. 

Bloody battles, however, aren't exclusively reserved for military maneuvers on foreign soil; there are plenty of personal wars that require just as much fortitude, strength and guts. Whether you're fighting an insurgent, an addiction, an illness, or an abusive relationship ... sometimes all we can do is live moment to moment - pushing through the fear. But as JFK said, "we should not pray for easier lives, we should pray to be braver men."

Nov 10th, was National NET Cancer Awareness Day. When I was first diagnosed with Carcinoid cancer, my father gave me some advice from his army commander: "don't worry about winning the war, you just have to be in a better position today than you were yesterday." 

I wasn't fazed by my right-hemicolectomy surgery until my 5th day in Sloan Kettering postoperative... Suddenly I became very, very tired... tired of throwing up, tired of pain, tired of needles, tired of the parade of nurses and doctors with encouraging words, tired of getting re-catheterized, tired of collapsed veins and failed IV ports. My mother saw my waning resolve and said, "this is where you earn the title cancer SURVIVOR... If it wasn't hard, they'd call it something else."

It hasn't been easy, but I finally started feeling well again these last 6 months.  Last week, however, my "leave" was up - and old symptoms returned: stomach aches, flushing, crushing pain, fevers. In military terms, it's called a STOP LOSS, which is when a military member is not allowed to separate or retire once their term of service is over. It's one of those "catches" they don't tell you about when you enlist. Bottom line, your life is turned over once you join the military, just like your life is no longer your own when dealing with rare illness. Who knows if these symptoms are signaling a second tour of duty in the battle against Carcinoid, or if there is a new enemy ... either way, time to cowboy-up and go back on the defensive.

Breath in the Funk

My Bikram yoga instructor began Friday's evening class with a stern warning,"If your fingers start to go numb, it's very important to tell me right away so I can give you an electrolyte pack, otherwise your face will go numb and you won't be able to ask for one."

He was not joking.

It was sort of like hearing a perky flight attendant go through the oxygen mask "safety demonstration" right before taking off in a flying oblong box... unnerving.

Woody Allen said, "80% of success is showing up." Obviously, Woody Allen has never taken a hot yoga class before.

Bikram (aka hot yoga) is one of the hardest things I've ever survived - and as a "beginner"... surviving is the best you can hope for. Bikram definitely requires more than just showing up; it requires unwavering willpower and fearless focus in order to complete the 26 grueling postures in a studio that's ideally set at 105*F with 40% humidity.

You start sweating about 4 min into a Bikram class. And when I say sweat, I mean water gushing out of every pour in your body - so much sweat that you can't even grip your ankles because your hands slide right off.

There is an undeniable funk about hot yoga rooms, despite odor eating machines and regularly shampooed carpets. I guess that's part of it. You got to breath in everything in life - even the unpleasant - in order to push yourself towards improvement.

Our instructor was incredibly motivational. When students started dropping (and some always do), he would stand next to their mats and assure them "I'm with you." In addition to periodic reminders about finger numbness, he constantly reminded us to breath into poses. People tend to hold their breath when they are in pain; and "relaxing" into pain and nausea isn't an easy task. It's nearly impossible.

But that's the entire point. Bikram teaches you how to deal with your body when it's "uncomfortable" - which is exactly what people desperately try to avoid feeling on a daily basis.  It's about making thousands of tiny adjustments in order to just get from breath to breath - squeezing, pulling and bending your body into perfect form under imperfect conditions.

You may be thinking: if it's that hard, why do people do it? Because after finishing a class, you feel completely cleansed - spiritually and physically. Bikram gives you clarity, which is worth the suffering.

So tomorrow I'll go back to the studio - to breath in the funk and exhale everything not essential for surviving the moment.

My yoga class… is one long, hot meditation. We put incredible pressure on you to teach you to break your attachment to external things and go within. Instead of blaming others for your own weakness, fear and depression, you will learn to take responsibility for your own life.

You’ve got to face yourself in the mirror, every part you don’t like, every mistake you make, every excuse your mind creates to limit your potential liberation – there’s nowhere to run, nowhere to hide. No escape from reality…

After you learn to discipline your body and mind under these conditions, you will truly be able to concentrate; no external will be able to break your powerful focus.

That’s why I say that the darkest place in the world is under the brightest lamp. In the Torture Chamber of my class, you will find a beautiful light, and the source of that light is within you.

~Bikram Choudhury

Carcinoid Cancer Diagnosis Anniversary

April 27th was the 4-year anniversary of my Carcinoid Cancer diagnosis. If cancer can be described as a roller coaster ride, then these past couple years have had some crazy loop-to-loops, upside down turns, and gut-wrenching drops. There really isn't a lot that is stable anymore; it's just learning to breath during the times when the roller coaster slows down or is climbing.

This past summer I lost over 20 lbs in 6 weeks - and was down to 104 lbs (I'm 5'5). I couldn't walk; I was having palsy episodes; I was in excruciating pain all the time... my two best friends, Rob and Mike, took me into their home, and instead of enjoying their summer - they applied cold packs, created complicated pain medicine schedules, carried me to the car for ER trips, picked up my prescriptions in the middle of the night, and took turns staying by my side 24-hrs a day.

None of my doctors could explain why my body was shutting down.. the blood tests were almost indecipherable - anemia with high iron, blood counts and sizes in direct conflict with each other... my doctors ruled out all the immunity issues: Lupus, HIV, etc - finally, elevated 5-HIAA "increased their reasonable suspicion" that it was probably the cancer or after-effects of the cancer. Just as inexplicably as it came on, the process started reversing itself in November.

That's the thing about the neuroendocrine system - it affects EVERYTHING... and even when the doctors tell you it's not the cancer; if there really is no other explanation then you got to trust your gut. I'm back up to 118 lbs and eating again. My palsy is at a minimum and the pain is managed well without narcotics. So I'm in that breathing space right now... but weird symptoms and pain remind me that I'm still strapped into that roller coaster seat... locked in.

I'm grateful for all of the love, strength, prayers, and support that my friends, family, colleagues and the Carcinoid community have given me. I know this - even if I'm stuck on this roller coaster for a while longer, I've got amazing people in my life who have opted to take that ride with me, and others who are on the ground - waiving... cheering me on.

Measuring New Year's Resolutions in Degrees

Traditionally, when my students come back from winter break, I take a brief hiatus from Shakespeare to discuss new year's resolutions.

When I ask my students, "who made new year's resolution for 2013?" - lots of hands go up. The class lists off some of the usual suspects, which I end up scribbling across the chalkboard... "lose weight, quit smoking, go to the gym etc"

Then, I boldly assert that "over 90% of new year's resolutions are doomed to fail - all because people don't know anything about etymology."

SIDE NOTE: Unfortunately, immediately after making this statement, one of my very smart and very quirky students became visibly concerned. I asked him what was wrong and he replied stone faced,"my resolution was to stay alive this year." Despite being in good health, he was dead serious (no pun intended). I reassured him that I was confident he would fall into the 10% success rate. My job is a lot of things, but it's never predictable.

After calming the fears of my one student, I explained the etymology of the word "resolution" - which comes from a Latin term resolutionem (nom. resolutio), roughly translating to "the process of reducing things into simpler forms."

Most people fail in changing their lives because they make things too complicated, or try to change too much.  They don't respect the etymology of the term and therefore end up right where they started prior to the stroke of midnight on New Year Eve.

Someone very wise once gave me sound resolution advice, which I now pass along to my students: try to just change your life by one degree... after all, whether or not water boils or freezes is only separated by one small degree of temperature difference. If one degree can completely change the form of water - imagine what it can do for your life.

Boiling point of water is 100°C or 212° F 

For example, instead of making a huge complex resolution like "I'll lose weight" - come up with a simple one degree change... a small part of the solution - like, "I'll add one vegetable to every weekday dinner." It's amazing how much you can alter your entire lifestyle by just changing one simple thing.

So what's my resolution? What's my one degree of change? To write a haiku every day. A simple 5-7-5 form just might be the reflective device I need to keep me moving in a healthy, creative direction. They don't need to be witty, or profound, or good - just an observation... a moment to look around at my life instead of run through it.

So here is my first one.

Facebook Haiku

cuz status update:

"Jersey Shore Boardwalk Ready

By 20-13"

UPDATE: March 2
My resolution turned out to be a little more than one degree.....

Haiku Abandonment 

Who knew haikus would 

be such an arduous task

to capture the day

New Ink

“A tattoo is a true poetic creation, and is always more than meets the eye. As a tattoo is grounded on living skin, so its essence emotes a poignancy unique to the mortal human condition.” - V. Vale

"everything was beautiful and nothing hurt"- my first tattoo

Unfortunately, my inkwell went dry for a while - despite a deep reserve of new stories and major life changes.

I have been feeling guilty about my silence. I can almost envision a disappointed Kurt Vonnegut, shaking his head as he rhetorically asks, "Who is more to be pitied, a writer bound and gagged by policemen or one living in perfect freedom who has nothing more to say?" My response to K.V. is - both.

I began thinking: How will I ever start blogging again? Where will I begin? I even pulled out my laptop a couple of times, but there just seemed too much to say... the white computer screen unblinkingly stared back at me, mocking my indecision.

But as Bukowski once said, even "writing about a writer's block is better than not writing at all." So I decided to start writing again, which meant haphazardly picking a moment from the past few months to reflect upon... I finally settled on November 17, 2012 - the day my close friend took me to his seriously cool tattoo artist at the "Tattoo Garage" in Bloomfield, NJ.

For the past 10 years, I have wanted to tattoo my favorite quote from Slaughterhouse Five across my back. The quote reads, "everything was beautiful and nothing hurt." Perhaps it's because my young life was wracked with such pain that I've been repeatedly drawn to these words; however, something always seemed to get in the way of putting ink to skin. I think I now understand why - sometimes, even if we know what we want in life, we aren't yet ready for it.

Everything about the day of my tattoo felt right. I loved the fact that my friend's artist was in Bloomfield - the town where I was starting my life over again, after a long battle against Carcinoid cancer; and after ending a 5-year relationship with a good man - who just wasn't the right man.  I finally felt like I had reached a point in my life where I was ready to take a shot at happy possibilities instead of merely falling back on survival instincts.

Shortly after getting my tattoo, wonderfully positive things began to happen.  I met an adoring man who actually understands who I am at my core, and has made me feel more loved than I ever thought possible. I've begun to finally put on weight again, and have managed to go from a size 00 (I didn't even know they made a "double zero") to a size 2. I started seeing a new oncologist, who is running the right tests and helping me stay on top of the cancer. And finally, I am continuing to develop friendships with deep roots and supportive care.

Truly now, my tattoo isn't merely a black and white quote ripped from the pages of my favorite book - but rather a living testiment to the idea that beauty is attainable if one can force themselves to push past the pain.

15 Things

Birthday Wish for Myself

I have been neglecting things.

My writing, my students, my friends, my family - they have all managed to slip just beyond my outstretched fingertips...

I wish I could  tell you why. But I can't.

Sometimes I feel like I hear a kitchen timer in my heart, ticking down the days - hours - seconds until my next surgery (which has been scheduled for July), or my next MRI or CT or TVU - or any other medical acronym that brings with it paper gowns and poisoned injections.

My baby sister is becoming a doctor. She has finished 2 years of medical school and is studying for the boards. Tomorrow, her big sister turns 38 and I'm still sick.

I wish I could be positive. But I can't.

Sometimes you grow tired of having to see "the bright side" of things all the time, and just want people to let you sit quietly alone in the rain. Teachers and cancer survivors don't really get to have bad days ...  people tend to look to them for reassurances that their own lives will turn out fine. It's a role I'm usually very proud of, and pretty good at... but not lately.

I know that it is important to actually go through things - not just around them. Guess I'm just trying to get through things the best I know how.

Joseph Campbell said "Life is without meaning. You bring meaning to it. The meaning of life is whatever you ascribe it to be. Being alive is the meaning." The fact that I can take a breath on my 38th birthday is in some ways the biggest testament to my life and it's meaning. So my wish for myself is to breath a little more deeply and little more peacefully in the future.

2 Year Anniversary

"When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something's suffered damage and has a history it becomes more beautiful." - Bloom

Friday, April 27, was the two year anniversary of my cancer diagnosis. I always hear people talk about cancer as a "journey" - but ultimately it is one walked alone. I remember trying to decide whether I should have my hemicolectomy surgery at the NJ Cancer Center or at Sloan Kettering. It was agonizing, and the only topic of family discussions for a solid two weeks.

Finally, my mom took me aside and said, "You know that you have our love and support, and we can keep going over the pros and cons of each center for as long as you need - but ultimately, when you are lying on that table, it's going to be just you and the doctor; nobody else. You can't doubt your choice."

My younger body was riddled with scars. Most of them are now more than 20 years old, and have faded so much that they are barely noticeable to the naked eye...  reduced to an existence sitting on a shelf in the hazy halls of dark memories. Once in a while, I find myself wandering those halls - remembering cigarette burns and black eyes - and marvel at my tenacity for finding a way out. I've never been ashamed of my past, nor have I ever felt sorry for myself... it is simply part of my life's story; nothing more, nothing less.

Now my body has a new scar. It's a strange alien like thumbprint above my bellybutton - where they put the surgical port in that took half my intestines and lymph nodes out. It's a reminder of how my body was taken from me for a while. I still haven't gotten it all back, but I'm making progress.

I'm eating, running outside, and even took my first spin class in 3 years. My body is starting to look healthy again - except for that alien scar. To an outsider, the scar may not seem like much - but for me, it has some strange mystical power ... making me forget the strength I once had. As Humpty Dumpty told Alice, when it comes down to it, the question is: which is to be the master - the cancer or me - that's all.

In Memory of Rachel

Rachel Cheetham Moro (1970-2012)

“When I first started my blog in 2009, I had no idea just how important it would become in helping me deal with this disease. What has surprised me even more is just how many people are interested in what I have to say." - blogger Rachel Moro

I have heard people call the act of blogging a way to share your unedited self with the world.  "A blog is a personal diary. A daily pulpit. A collaborative space. A political soapbox. A breaking-news outlet. A collection of links. Your own private thoughts. Memos to the world." (blogger.com)

For me, Channeling Jackie-O was initially a way to share information about my rare cancer with my family and friends in California, but eventually it became much more - a way for me to connect with other cancer patients and advocates. I am incredibly grateful for the amazing online community support that my blog has provided me, and for the new friends I've made through my writing.

One of my blogger-friends, Rachel, recently died from stage IV breast cancer. And I miss her.

I miss her comments to my posts, and reading her incredible words - her "unedited self" - that she was able to share so eloquently with the world.

On December 31st Rachel posted a comment to my blog about the Laurita Winery: "Definitely going to have to check this place out! - Rachel" After reading her comment, I had thoughts of us finally meeting face to face - two Jersey girls, swapping encouragement and stories over a bottle of Chardonnay.

Rachel died Monday, February 6th, and there is an aching sadness that I will never have the opportunity to meet her in person; she was only 42 years old.

Rachel was brave and talented, and like all great writers, she was a keen observer of life. As a young women twice diagnosed with breast cancer, Rachel was unabashedly critical of the "pink pop-culture" movement. Through her blog, The Cancer Culture Chronicles, she challenged her readers to move beyond pretty pink ribbons and balloons, and take a long hard look at the ugly truth about metastatic breast cancer, which has somehow gotten buried underneath mountains of pink glitter.

Rachel was an intellectual powerhouse at crunching numbers and calling out the foremost cancer organizations for not doing more (especially Susan G Komen Foundation - see Rachel's post "Komen by the Numbers"). But what I loved most about reading Rachel's blog was her dark humor about the daily absurdities of living in "cancer world" as a permanent resident - rather than as a tourist merely passing through during a charitable bike race or 10k run.

If you like my blog, you'll love Rachel's; below is an excerpt from one of her posts "Pink Proxy". My heart goes out to her beloved husband Anthony, to her friends and family, and to her extended "blogosphere family" - whom she touched through her honesty, wit, spirit, and unique outlook on life.

I've never been very good at goodbyes, so I'll let Shakespeare do it for me: "Now cracks a noble heart. Good night, sweet [friend], and flights of angels sing thee to thy rest." (Hamlet)

"Indeed, the writing does send out tentacles that demand to be heard and invariably evoke a response and hopefully a call to action of some kind. We must keep writing to keep being heard. It is imperative" - Rachel

From "Pink Proxy" - Cancer Culture Chronicles, Nov. 7,  2011

by Rachel May Cheetham Moro (http://cancerculturenow.blogspot.com)

"...Then the news. You have a pneumothorax (partial collapsed lung) and we're taking you down to the emergency room now. Great. Here we go again. Cue the waterworks.

Pull up to emergency room desk. Me in my wheelchair sobbing. Radiology nurse clucking attentively. Emergency room desk receptionist dressed in bright pink breast cancer awareness sweatshirt and pink ribbon lanyard. Rather than taking pity on me, as I would have expected from someone who was so aware of breast cancer, and on the last day of Pinktober no less, the bitch (it's the only fitting descriptor) couldn't have cared less, and rudely waved us on to the next receptionist.

It was at this point that I stopped crying, and almost burst out laughing at the irony of the scene.  Has the color pink simply become a proxy for giving a shit? Wasn't I the point of her stupid sweatshirt? Wasn't I entitled to some special pink treatment during my special pink month? What's the point of having breast cancer if you can't jump the ER queue at least because someone's AWARE of you? Perhaps it was my fault. Maybe my chart wasn't clear enough. More the fool me for forgetting to wear my pink feather boa, bedazzled pink fedora, and Fight Like A Girl t-shirt.  End facetiousness..."

Some of My Favorite Posts by Rachel

2012, With No Apologies to 2011 (1/9/12)

Breast Cancer Awareness Jersey Shore Style! (10/1/11) 

Planet Unicorn (9/4/11)

Another Year, Another Burger (8/2/11)

Chest Pains (7/11/11)

Moving Forward. Hopefully In A Red Karmann Ghia (12/1/10)

Pink Fall (9/19/09)

The Dalai Lama on Health...

Rainbow Brite and Wordsworth

Rainbow Over Our Condo - October 20, 2011

Rainbows apologize for angry skies. - Sylvia A. Voirol

As it just so happens, last week I was having a really pain-filled day (the kind where I can hardly move without feeling like my entire body is in a giant vice - and my bones are getting slowly crunched together).

It was also raining.

During my hour-long commute home from school, the fog and rain were so terrible that I could hardly see. I have to say that between the pain and the weather, I was feeling pretty glum. About 5 minutes from home, the rain stopped; and as I pulled up to our condo, a beautiful rainbow appeared.

Along with every cliche rainbow saying in the book, Wordsworth's poem sprang to mind... and Rainbow Brite (one of my sister's favorite cartoons). Say what you will - Rainbow Brite and Wordsworth were on to something...

 My heart leaps up when I behold
       A rainbow in the sky:
   So was it when my life began;
   So is it now I am a man;
   So be it when I shall grow old,
       Or let me die!
   The Child is father of the Man;
       I could wish my days to be
   Bound each to each by natural piety.
(Wordsworth)



"Hey glum face, the next time there's a rainbow, look up.
You'll feel better."
(Rainbow Brite)

The Importance of Hair

My New Hairdo 9/28/11

Hair is important... just ask any guy spending $19.95 a month on rogain, or the average woman who spends well over $100 every 5 weeks for a cut and color (don't even get me started about the additional cost of a blowout).

Millions of dollars are spent every year in salons and on styling products, and networks are starting to create reality TV shows (e.g. Tabathas Salon Takeover; Shear Genius) that showcase the "real" trials and tribulations of bobs and bangs. Even Sarah Palin's hair salon is getting its own series: Big Hair Alaska, "where the personalities of the owner and her staff are as big as the hairstyles they create."

Why all the fuss?

Hair has long been considered a source of mythological and cultural strength. Some Native American tribes believed that scalping was a way to capture their enemy's strength. In the Bible, Samson is granted unimaginable physical strength by God on the condition that he never cuts his hair. (Samson of course loses his power when Delilah finds out his secret, and has his head shaved.) Even today, certain faiths still forbid their followers to cut their hair, such as Amish women and Sikh men.

Hair is important... just ask any cancer survivor who has gone through the trauma of losing it.

I've been a frequent flyer at different cancer centers these last 15 months, always with a full head of hair. While I am grateful that carcinoid cancer really doesn't have a treatment path that leads down the way to baldness ... my locks always make me feel like a bit of an impostor - like a weak warrior on a battle field of combat veterans who wear their shiny bald heads (delicately lined with thin blue veins, wrapped in colorful silk scarves) like fierce battledress.

In the new Seth Rogen comedy, 50/50 (opening this weekend) two 20-something bosom-buddies find out that one has cancer - with a 50% chance of survival. The trailer plays a familiar scene in which they use a "questionably clean" set of body trimmers to shave off the one friend's hair, before the chemo and radiation can melt it away.

This film scene isn't fiction for one of my seniors - Tim - who did the same exact thing, two years ago. (Except he used very clean trimmers of course!)

In tenth grade, Tim was diagnosed with advanced stages of Hodgkins Lymphoma, and had to complete the year through home-tutoring and painful cancer treatments. He returned his junior year and organized the first ever PC Relay for Life, which raised over $43,000 dollars for the American Cancer Society. He and I were the speakers at Relay's opening ceremonies, and formed an instant bond. We were both thrilled that he was in my English class this year, and for the past two weeks, we have been working on his college essay.

Tim started his college essay with a memory from the day his pediatric oncologist told him, "you have cancer" for the first time. At this point, his immediate thought did not turn to the fear of dying, but to the fear of going bald. Apparently, Tim was absolutely obsessed with his hair and couldn't imagine living without it. Eventually, he decided that he needed to be the one to take his hair - not the cancer... so first he gave himself a Mohawk, and then he shaved his head.

Having the privilege of getting to know this young man, I can unequivocally state that Tim's spirit and strength could outmatch a follically endowed Samson in any battle - any day of the week.

So I think the mythology got it backwards. Hair in and of itself does not pass along secret powers to its owner... rather it is the act of losing one's hair in a deadly, knockdown-dragout fight against an invisible enemy that makes one truly heroic.

Teaching About 9/11 (in English Class)

During my senior of high school, my mother, sister and I moved to an orange farm in Ojai, CA; before that, we lived in Ridgewood, NJ in Bergen County. Three years ago, I moved back to NJ and began teaching English at Paramus Catholic HS - just a few miles away from where I grew up... a full circle.

Bergen County is a suburban area that is heavily populated by Manhattan commuters; and before my family's cross-country relocation, both my parents worked at what's now known as ground zero. Sadly, many of my students lost family members in the tragedy.

The beginning of our school year always inevitably corresponds with the anniversary of 9/11. This year, we had orientation on Thursday (September 8th) and started classes on Friday - two days before the 10th anniversary of when everything changed in America.

While I could have spent the first day of classes jumping right into Unit 1 - an introduction to the ancient texts of Mesopotamia, I felt it was important to recognize the magnitude of 9/11.

After I began the class with a prayer - remembering all those affected by the terrorist attacks, I asked students to raise their hands if they had ever read The New Yorker before - not one of my 118 seniors raised their hands.

I explained that The New Yorker is basically a literary magazine, filled with a datebook, cartoons, short stories, essays, fiction and poems; and that it would provide an important literary voice for reflecting on the 9/11 attacks. Then, I passed around my advance copy of The New Yorker's 9/11 edition (reason #637 why I'm not a Kindle fan - passing around a Kindle version of The New Yorker to students whom had never seen it before just wouldn't be the same).

I then read from an essay in the magazine's 9/11 edition: "Speechless", by Jonathan Safran Foer.

Literary Non-Fiction Essay

"Speechless" starts with a personal anecdote - the author recalling his young son crawling into bed with him and his wife after having a nightmare. When the author asked his son what the nightmare was about, his little boy was at a loss for words:

"At the time, I thought he didn't want to describe it: putting a nightmare into words - saying it aloud and sharing it - would only expand the terror. But I've come to wonder if he simply didn't possess the vocabulary. And if that failure of language was at least part of the problem."

The author uses his son's inability to articulate what was so frightening about his dream as a metaphor for his own inability to explain what it was like living in New York on 9/11:

"How could this world be so unlike the world that I believed I was living in? I can't describe it. Do I not want to describe it, or do I simply not possess the vocabulary?"

(Here - I snuck in a quick review of metaphor v. simile.)

The piece concludes with a reflection on the power of language - not only to make sense of the senseless, but as its own form of heroism:

"Is there anyone who hasn't played out the nightmare of having been trapped in one of the towers? Is there anyone who hasn't wondered if he would have had the superhuman composure to call and comfort a loved one? Dozens of phone calls home were placed from the towers between the moment that the first plane hit and the time that the north tower collapsed. When words should have been most impossible to find, there were words of grace, and dignity, and consolation. Words of fear, and words of love. There's nothing to learn from this, except everything."

After we discussed "Speechless" and the importance of having the "vocabulary" to adequately tell our own stories, I asked the class if anyone had seen photos of the planes crashing into the towers. This time, every hand went up. The fact is, you couldn't turn on a television leading up to the 10th anniversary without feeling like you were trapped in a time warp - the newsreels looping a never-ending reminder of terror.

I then asked my students if any of them knew what the City was like immediately following the attacks... none of them did.

First-Hand Account (Interview)

I then shared an interview of a 16-year-old girl that I heard on the radio on the way to school that morning. She was asked what she remembered most as a 6-year-old living blocks away from ground zero. Ash. She remembered ash covering everything - and how she begged her parents to buy her a purple plastic umbrella that she carried with her outside every single day for three years. She also said that she taught herself to read, just so she could read the weather report every day - so she would be prepared if something like this ever happened again.

I told my students that when I first heard the interview, I didn't make the connection - but then it dawned on me. This little girl associated an environmental change (ash) with panic and sadness. She didn't see the towers crashing, and had no way of linking cause and effect; all she knew was ash was falling from the sky - like rain - and if she had some advanced warning when the ash was coming again, she could feel in control of her situation.

Poetry

Then I lead a brief discussion about how poetry could also be a way to gain a sense of control through self-expression. Next, I held up the tenth anniversary edition of Poetry After 9/11, An Anthology of New York Poets, and I read a short excerpt from the Forward, written by editors Dennis Loy Johnson and Valerie Merians:

"There were, in the immediate aftermath, poems everywhere. Walking around the city you would see them - stuck on light posts and phone stalls, plastered on shelters at bus stops and the walls of the subway stations. In neighborhood newspapers the letters-to-the-editor pages were full of them. Downtown, people scrawled poems in the ash that covered everything. And on brick walls of police stations and firehouses, behind mountains and flowers and between photos of the dead, poetry dominated... Prose wasn't enough. There was something more to be said that only poetry could say. Everybody, apparently, knew this."

We then discussed as a class what the editors meant by: prose wasn't enough. (Here, I managed to sneak in a mini-lesson about genre, and the relationship between form, purpose and audience as well as the importance of cultural context in analyzing literature).

Finally, I shared one of my favorite books - which isn't a book at all in the traditional sense... rather it's a book of postcards entitled Haiku on 42nd St, A Celebration of Urban Poetry & Art . Each postcard is a photograph of a haiku poem that found its way onto one of the empty porn marques of Times Square.

After shocking the socks off of my students by describing how Times Square used to be a very different place (filled with shady hawkers, prostitutes and drug addicts - not $200 show tickets, strolling tourists and sidewalk seating), I defined the word "gentrification" and briefly mentioned some of the mixed social connotations of the word.

Holding up my postcard book, I explained that the photographs captured a moment of transition in Time Square's history - just before one of the most dangerous areas in NYC became one of the most sought after tourist destinations in the world. Perhaps these unsolicited haikus were one last rebellious dare - challenging the magical land of Oz (or Wicked) that was soon to follow.

For homework, students were asked to brainstorm about a moment of change in their own lives that they might use for their college essays. I reassured them that their "moment" didn't have to be as dramatic as 9-11, it just needed to provide a little snapshot of their character for the admissions officers to see.

I will end this blog the same way I ended my first day of 12th grade World Literature classes - with two 5-7-5 snapshots of New York City ...

9/11: Remember * Honor * Reunite.

Additional 9/11 Links:

Gathering Place - remembering those with disabilities on 9/11: This blog reflection is especially powerful for me, because my mom is disabled and this was one of the first things she said after the planes hit ... "what about the gathering place?" I didn't get it - she did. When you are disabled you are supposed to wait at a certain location for help in case of an emergency - all those people with disabilities (save one blind person whose dog led him out) died at the designated "gathering place" waiting for help that never came.

Baseball symbolized resiliency after 9/11: The nation turned to baseball after 9/11 for a sense of normalcy and healing; this article captures some of the incredible moments - including Fenway Park's famous 7th inning stretch when the entire stadium erupted in "New York, New York" during their first home game against the Yankees after 9/11.

National September 11 Memorial (WTC): A guide to a national tribute of remembrance and honor to the 2,983 people killed in the terror attacks of September 11, 2001 and February 26, 1993.

Prayers, Vigils, Remembrances Mark 9/11 Anniversary: A listing of events in Washington, PA and NY to remember the victims of the 9/11.

The Sept. 11 Attacks, Remembered - PICTURES: A series of pictures of international and national remembrances.

For My Teacher Friends... Concepts Taught In This Lesson

Vocabulary: gentrification; connotation
Literary Terms: simile; metaphor; genre
Writing: relationship between purpose, form and audience; cultural context; voice
Poetry: haiku, postmodernism
Big Idea: there is nothing more important than stories - and nothing more powerful than having the ability to skillfully tell our own stories to others

A Para-Equestrian's Passion

My beautiful mom showing off her Mother's Day present: a pictorial history of Jackie-O's lifelong passion for horses

My mom contracted polio in 1955; ironically the same year the vaccine came out - she was 5 years old. She spent 10 months in the hospital, and the polio left her with severe weakness in both legs. The doctors all said she'd never walk again, but she proved them wrong by walking, by herself with the aid of leg braces, up to the altar to receive her first Holy Communion. Afterward, she got a gift that would change her life: a ride on a white pony.

My mother in 1956 with my grandfather - taking her first ride on a horse while still wearing her leg braces, Holy Communion dress and veil

This began my mom's love affair with horses... but it wouldn't be until she was in her 50s that she would start competing competitively as a para-equestrian rider. Over the past few years, she has gotten so good that her competition level required her to get her own horse. After much searching, she finally found Andy - a beautiful white Arabian. I can't wait to meet him this summer.

Mom and her horse Andy at
REINS Therapeutic Riding Stables

My mother's grace and talent continue to inspire all who meet her, especially those in the equestrian community. Thanks mom for reminding me every day that there is no value in being a victim - only in living bravely.

Why Princesses Matter

"Fairy tales do not tell children the dragons exist. Children already know that dragons exist. Fairy tales tell children the dragons can be killed." - G. K. Chesterton

Marlena, Princess of Emerson NJ (1976)

It's a strange phenomenon. We encourage little girls to grow up to become doctors and lawyers, yet we dress them up as miniature princesses every Halloween, and relentlessly play Disney DVDs over and over again, until they become obsessed with pink tulle dresses with matching sparkly tiaras. (Go to Toys 'R Us and just try to find the "high powered business executive" themed birthday party paper-plates, streamers, and napkins... not happening.) As we grow older, our fascination with princesses doesn't go away - it simply morphs into an "adult version" of a fairy tale: the wedding.

Diana, Princess of Whales (1981)

On July 29, 1981, my mother and I watched a beautiful 20-year old girl emerge from a horse drawn carriage and walk into St. Paul's Cathedral - with her 25-foot train, trailing behind her. I was seven years old at the time, and Princess Diana's wedding is one of the first clear memories of my childhood that I have. Last weekend, I once again watched a simple girl become a breathtaking princess ...

Catherine, Duchess of Cambridge (2011)

Catherine ("Kate") Middleton married her prince in Westminster Abbey, with 2.5-3 billion people watching; four years ago, about the same number of people watched another royal gathering at Westminster Abbey: Princess Diana's funeral.

Touchingly, the last hymn sung at Diana's funeral - "Guide me, O thou great Redeemer" - was the first hymn sung at her son's, Prince William's, wedding. As I watched Kate standing at the alter in her laced bodice gown, I was immediately reminded of Grace Kelly's wedding to Prince Rainer of Monaco.

Grace, Princess of Monaco (1956)

On April 16, 1956, American movie star Grace Kelly married Prince Rainier (who proposed three days after they met) and became Princess of Monaco. Life as a princess for Grace Kelly, however, was no fairy tale. Prior to her marriage, she was a very accomplished actress, starring in three Hitchcock films, and even won the Oscar for Best Actress in 1955. After her wedding, however, Prince Rainier banned all screenings of Kelly's films in the country, and refused to allow her to act in any future projects.

Sadly, Grace Kelly died at the age of 52 in a car accident. Ironically, Princess Diana was the representative for the British royal family at Princess Grace's funeral in September of 1982. (Diana, of course, was also tragically killed in a car crash - she was only 36 years old.)

No life is filled with only happiness, but as the expression goes, if we did not feel the cold of the rain, we would never appreciate the warmth of the sun. The divorce rate in America is about 50% - but that does not stop us from spending over a thousand dollars on a single beautiful dress that we will wear for just one day, and posing for hours for an overpriced photographer - hoping he will capture our own storybook promise of "happily ever after" on film.

These moments of celebration, of joy, of beauty are absolutely necessary; whether it's a wedding, prom, or quinceanera... we all need to see flashes of fables come to life - even if only for an instant - to remind us that sometimes the dragons really do get slain, and love really can conquer all.

Happy Anniversary to Me

“Birthdays don't really matter much anymore ... for me, I sort of have a new birthday and that's October 2nd, the day I was diagnosed, ... the day we all sort of look to and mark these milestones by one year, two year, five year, 10 year. Hopefully, I have a 50 year.” Lance Armstrong

One year ago today, I was diagnosed with carcinoid cancer; the following day, I started this blog. Recently, somebody commented that perhaps Channeling Jackie-O had lost focus, "I mean - is it a cancer blog? a travel blog? a food blog?" I guess the answer is - it's all of those things, because although cancer has become a big part of my life, it has not consumed my entire identity.

One of the toughest things about this past year has been trying to lead a "normal" life - in between doctor appointments... my blog is a record of both the cancer, and life beyond the cancer. So here is to another year of colonoscopies and Sloan Kettering appointments, teaching and grading essays, traveling with friends and eating great food... here is to another year of celebrating life - one day at a time.

Does Cancer Hurt?

"A man's illness is his private territory and, no matter how much he loves you and how close you are, you stay an outsider. You are healthy." - Lauren Bacall

When I was first diagnosed with cancer, one of my students shyly asked, "Ms. Johnston, does cancer hurt?"

I could see the worry in her expression, and I gave her the only answer I could: "No, it doesn't hurt at all - I'm just a little tired, but I'm not in any pain."

That, was a lie.

Cancer hurts - not only does it wage a brutally physical and psychological war against the patient, but it injurers the patient's friends and family - innocent bystanders - along the way. One of the most painful things about having cancer is watching the people around you, whom you love with all your heart, become deathly afraid of losing you... sometimes they look at you so intensely, so desperately, that it's almost as if they are searching your gaze in hopes of uncovering some secret expiration date stamped on your pupils.

I don't know if my increasing pain and decreasing health is related to the carcinoid cancer or something totally different; what I do know is this - my body is in the middle of a mutiny, and my friends and family are helplessly watching as this syndrome, or illness, or cancer (whatever it is) is conspiring and rebelling against me. In the end, the fight is mine to win.

I'd Rather Teach Peace

Colman McCarthy's book I'd Rather Teach Peace is a required read for anyone who doubts the power of passionate teachers. In fact, it should be on the reading list of every news anchor who diabolically delights in demonizing teachers based on outdated stereotypes.

Before I became a teacher, I made six figures as an attorney at one of the biggest and most prestigious law firms in the country. I was good at my job, and I didn't leave because of the great allure of summers off or getting out at 3pm (which never happens)* .... I left the firm for the same reason every good high school teacher joins this thankless profession - because I felt an overwhelming need to pursue a career where I could make a difference, a real difference, in the lives of teens.

*News Flash for all you doubting-Thomases out there: I work MORE hours as a teacher than I did as a third-year associate at the law firm, only I don't get a fancy car, or an expense account, or trial bonuses. Instead, I get something much better - my kids; there is no better place than with my students, celebrating their successes.

Now, amidst this recent "teacher-bashing" public dialogue, I find comfort of purpose in McCarthy's words:

"At fifteen, sixteen, and seventeen, the ages of everyone in the class, teenagers are shopping around for ideals to live by. This week I was reading a bit of Mother Teresa, whose Sisters of Charity have three convents in Washington and whom I interviewed when she opened the last one in the south-east part of the city. I ask a student to read aloud a few of nun's lines [from "Anyway"] that might help everyone, me included...to be the idealists we are meant to be."

Anyway

People are unreasonable, illogical, and self-centered.
Love them anyway.

If you do good, people may accuse you of selfish motives.
Do good anyway.

If you are successful, you may win false friends and true enemies.
Succeed anyway.

The good you do today may be forgotten tomorrow.
Do good anyway.

Honesty and openness may make you vulnerable.
Be honest and open anyway.

What you spend years building may be destroyed overnight.
Build anyway.

People who really want help may attack you if you help them.
Help them anyway.

You see, in the final analysis, it is between you and God.
It was never between you and them anyway.