The Power of Words

outlivingit

As featured on First Descent’s Outliving It http://outlivingit.com

 “Sticks and stones may break your bones, but words will never hurt you,” was a phrase uttered in my household growing up. This was usually preceded by an insult or verbal nastiness from a cousin or sibling. With all due respect to the adults who doled out this prescription…Worst. Advice. Ever.

Words do hurt and have the power to evoke the strongest emotions. Chances are, if you’re reading this, cancer has been one of the most powerful, painful, transformative, definitive words of your life. It’s a word that takes less than a couple seconds to say, but it’s effects permeate a lifetime.

Through personal trial and error, I’ve found that after spending some time thinking about the vocabulary, it is possible to transfer some of the control from cancer to myself, which is a welcomed feeling considering how powerless cancer makes me feel. I’ve also learned that the vocabulary is different from person to person. If you’re not sure where to start, below are a few of the guidelines I’ve created for myself when talking cancer. Hopefully some of these will get you inspired to create your own list.

I have chosen to not to claim cancer. Don’t want it. Never have. Never will. Therefore, it’s not “my” cancer, but “the” cancer. “I don’t have cancer,” but “there is cancer inside my body.” Sure, it’s a play on words, but this is how I make sure cancer knows it will never be mine no matter how hard it tries. Like, ever. Also, something about the word “patient” makes me feel helpless, which is why I refer to myself as a “survivor”, which makes me feel powerful.  This is a label I attached to myself the day I was diagnosed and not the day I heard, “no evidence of disease.” There are many definitions to “survivor” but it’s pure context is, “to endure or live through (an affliction, adversity, misery, etc.)” so I am surviving no matter my current medical status.

One of the many things cancer has taught me is that most people do not know how to respond when I tell them how it has impacted my life. I can easily predict the deer in headlights look as the person searches for the right words. Naturally, they respond with a cliched, pre-packaged, canned and sometimes offensive response. I totally get it. I used to be this person. I still am this person sometimes. Cancer is so awkward and uncomfortable. However, what I have found useful is to tell my friends and family what’s up, ahead of time, if possible, through an email message, so they have time to process and formulate a response.  In addition, I’ve also found it helpful to tell them what they can say to encourage and support me. Doing this has made it easier on both of us. Our friends and family want to be a source of encouragement and support and it’s unreasonable that we expect them to say the right thing when they have no idea what we need or want to hear. Here’s a couple suggestions I’ve used in the past:

Instead of saying, “I’m so sorry you’re going through this,” I ask that they say,  “I know you have the strength to get through this,” because I do. The former invokes feelings of pity, while the latter makes me feel strong and supported. I also asked for my supporters not use battle language or tell me to beat it, stay strong or positive. My feeling towards these phrases is that they imply if I just try a little harder, then I will be healed. Being the recipient of these words only invokes feelings of guilt if I don’t beat it or have the inevitable and normal periods of weakness or negativity. Cancer is not a matter of trying hard enough. And when all else fails, I enjoy the honest simplicity of, “I don’t know what to say.”

And for the love of all that is holy and sacred in this world, please, I beg of you, to not saying that someone, “lost the battle” if they pass away. We don’t describe death from heart disease, freak accidents, natural causes etc. in this manner. Using this phrase implies if the person only fought harder, they would have not died.  Loser’s lose which is the exact opposite word I would use to describe someone who’s been through cancer treatments. Those impacted by cancer endure surgeries, toxic chemicals, crazy side effects – cancer survivors are hard core, bad-asses. The strongest of the strong. Not defeated losers. In fact, in the Sorcerer’s Stone, Dumbledore wisely says, “Death is but the next great adventure,” which seems like a fitting description for those in the First Descents tribe, who have passed on.

Again, these are the terms that work for me. Just like every cancer is different, the words we find comfort and power in will be different. I encourage you to spend some time thinking about your vocabulary and once you’ve built your dictionary,  tell your support team.

This blog was featured on First Descent’s Blog, www.outlivingit.com. First Descent’s is a non-profit that offers young adult cancer survivors (FREE) adventure trips where they learn the healing power of community and nature through participating in activities such as kayaking, rock climbing and surfing. In September 2016, I attended a First Descents Surf Program in Santa Cruz, California. Read about that here.

Cancer Camp Reunion

This is the story of three, thirty-something girlfriends from Denver. Let’s call them Harry, Lloyd and Elle. They had wonderful marriages, adorable children and flourishing careers. You might say they had it all.

And then they all had breast cancer.

First to be diagnosed was Lloyd. Months later, Harry. After Harry, it was Elle.

Shortly after her diagnosis, Elle found a bracelet that said, LIKE A BOSS. She thought of her daughter and decided that would be her mantra for facing this disease. So the three friends got their forearms tattooed and the “Breast Friends” were born. From what it sounds like, they had a good time while confronting an experience, I would describe as the opposite of a good time. I recall a story of them sitting on Lloyd’s front porch laughing hysterically at the terrified expressions of passersby – three bald, young mothers watching their children play outside as if nothing about them was unusual.

img_1865Elle had a crazy idea that the three of them should go to a week-long surfing camp with First Descents, an organization that takes young adult cancer survivors on (FREE) adventure trips.  So, the three of them signed up. Then, Elle got really sick. Then, she died.  She was 36 and left behind two beautiful babies and a husband. Harry and Lloyd spoke at her memorial saying how she would be their lighthouse.

Harry and Lloyd knew they had to go surfing to honor Elle and so they joined thirteen other cancer survivors in California in September 2016. Their residence for the week – Pigeon Point Lighthouse. The universe works in poetic and mysterious ways.

1476993212Some of the most definitive moments of the week were not those spent conquering waves, but were when Harry and Lloyd spoke of Elle. They brought some of her ashes to be spread at the lighthouse and at Cowell’s Beach where we learned to surf. On the last day, our entire group was in the water, sitting in a circle on our boards, having a moment of silence for Elle, when a harbor seal popped its head out of the water. Call me crazy, but that was Elle and she got her wish – she was surfing in the water with her friends.

This past weekend, my husband and I voyaged to Denver for Easter. I was looking forward to visiting a new city and Rocky Mountain National Park, but I was most excited to have dinner Saturday evening with Harry and Lloyd. Over big bowls of ramen, we laughed and reminisced about our week of surfing with First Descents. Talking about the other campers, the funny moments and the mandatory nicknames (hence the story behind two comedic girls called Harry and Lloyd). We talked about how we loath being labeled as brave or courageous, after doing what anyone else would have done in our situation. We talked about people in our lives who have been recently diagnosed – children, mothers, friends, young women.

The injustice of cancer is mind-blowing and reminded me of a quote in Susan Sontag’s, Illness as Metaphor:

“Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

And by having been citizens of that other place, Harry, Lloyd and Mitten (that’s me), decidedly agreed that because of cancer, we are all better people. And that to best honor their friend and the others we’ve lost along the way, we are obliged to be grateful, compassionate and out living our lives to the fullest, every day…like a boss.

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If you’re interested in learning more about First Descents, check out their website at www.firstdescents.com. Or if you’d like to financially contribute to the Like A Boss Team, click here. To date, Harry and Lloyd have raised over $13,000 – enough to send six other survivors to a week-long camp. Click here to read about my week with First Descents.

2017: Overcoming Addiction & Being Present

It seems like many people were happy to bid adieu to 2016. As for me, not even the disappointment of a surprise surgery, putting my dog to sleep and the election outcome could trump the train wreck of my 2015, so I’m going to declare the year pretty darn awesome.  I travelled to the Dominican Republic, Mexico, France, Switzerland, Belgium, Holland and Spain where I walked 258 miles to fulfill a dream of completing the Camino de Santiago.  In April, I preformed at the Bluebird Cafe in a production called My 2nd Act: Survivor Stories from the Stage. In July, I spent the month in Michigan completing 200 hours of yoga teacher training.  Then in September, I went to California and learned to surf with fifteen other cancer survivors through an organization called First Descents.  And in between all those adventures, I published several blogs, articles and wrote nearly everyday.  So, yes, I’d say 2016 was not so bad.

 

Of course, I’d like to continue and increase the adventures in 2017, so I spent some time thinking about my goals for this year.  I realized setting and accomplishing SMART* goals has always come easy for me, but what I want more than anything is something not so measurable.

Somewhere around when I got an iPhone, I developed an obsession to anything connected to my device.  The internet, social media, streaming TV, etc.  Then while I was going through treatment my addiction intensified because I would spend my days in bed watching the iPad. Now that I’m well, I can see the addiction has gotten out of control.

What bothers me most about my problem is how it distracts me from the activities and people I truly care about. It eats at precious time I could spend writing, doing yoga, reading, hiking, running, etc. and it steals my attention from my husband, friends and surroundings. Ultimately, I hope addressing this addiction will allow me to be more fully present in my own life, which is what I want more than any check box next to a goal.

One of the many life lessons cancer taught me is the only guarantee we have is the present moment – the one we are in right now.  I’ve realized in addition to my device addiction, I spend a lot of precious time reliving traumas of the past and the “what ifs” of the future.

This morning I came across a perfect passage in the book, The Artist’s Way:

“In times of pain, when the future is too terrifying to contemplate and the past too painful to remember, I have learned to pay attention to right now. The precise moment I was in was always the only safe place for me. Each moment, taken alone was always bearable. In the exact now, we are all, always, all right.”

And there it is again – being present in my life as a method for coping with trauma of the past and uncertainty of the future.

I wish you all health, wealth, strength and whatever else you need to accomplish your measurable and immeasurable goals of 2017.  Also, I’d like to take this time to thank you for reading my blog. If someone you know has been affected by cancer and/or chronic illness, please feel free to share my site with them, or better yet, have them send me a message.  Below you’ll find my most popular blogs from 2016:

Waiting for Hair: The Toll of Chemotherapy – The fact that this was the number one post of the year doesn’t surprise me. When I was going through hair loss, I wasn’t able to find a lot of info on what the growing out process was like. I also did a follow-up to this post, One Year of Hair After Cancer. That has been a few months and I’m happy to report I have a ton of hair. It’s in a bit of an awkward stage right now, but whatevs, I’m happy to have hair.

Living Universal Truths on My Cancerversary – I really love this post and the seven universal truths.

Cancer Camp – Details on my week surfing with First Descents, an organization that takes young, adult cancer survivors on adventure trips.

 

*Specific Measurable Achievable Realistic Time-Based