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.

Advertisements

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.

full_1477014185

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.

Cancer Camp

87WSyMSm

As featured on curetoday.com

During treatment, a fellow survivor friend raved about her experience with an organization called, First Descents (FD). FD is a nonprofit that takes young adult cancer survivors on free adventure trips. Yes, yes and yes. I liked them on Facebook, signed up for their newsletter and went on with the business of getting well.

After surgery and completing chemotherapy, I started to feel more like my adventurous self again. Also around this time, I received an email about First Descents 2016 programs which included rock climbing, whitewater kayaking and surfing at various locations throughout the United States. All of them sounded like fun, but I chose surfing in Santa Cruz, California. I’d never surfed before, but have tremendous respect for the sport. I’d equate watching surfers to watching fire – mesmerizing. The intuition to read the ocean, defy the odds of a wave and staying calm during an inevitable wipe out are all impressive and admirable qualities. Surfing and cancer don’t sound so different.

img_1865

Stunning Pigeon Point Lighthouse (and where we stayed for the week)

Arriving at the San Jose International Airport, I was immediately spotted by the other campers. The short hair and baseball hats are usually dead giveaways for us women cancer survivors. After a curvy drive over the coastal mountains, we arrived at our home for the next week – Pigeon Point Lighthouse on the Pacific Coast Highway. It was a stunning location.

img_2280

Cowell’s Beach in Santa Cruz

The next day, we arrived at Cowell’s Beach in Santa Cruz and were lead by Richard Schmidt’s Surf School. Little did we know then what a legend Richard Schmidt is in the surfing community. Surf Splendor Podcast even called his school, “the oldest and most prominent in the world.” Richard and his instructors were extremely kind, humble, encouraging and considerate to our motley crew and we all felt honored to be taught by masters. Once we got our wetsuits on and a beach quick lesson, we were let loose in the water. The first day, I struggled and never got up on my board. Surfing is hard for a strong, fit person, but it’s even harder when you’ve been taken apart and pieced back together by surgeons like many of us had been. We all kept at it and to my surprise, the next day and the rest of the week, most of us were able to get up and ride some pretty sick waves, as they say. A day of surfing was reminiscent of how you feel as a child after a day of swimming – happy, satisfied, starving and exhausted.

Some of my favorite moments throughout the week had nothing to do with surfing, but from being in a group where I could joke about cancer. This is not something I’m able to do too much in my regular life because it’s usually met with a stern “not funny” look from my husband or other family members. We all cracked up when someone made an origami fortune teller and joked that’s what doctors use to determine the number of rounds of radiation and chemotherapy. Or demanding to see a port scar as a means of entry into our living area. Laughing about having cancer flare-ups to protesting something we were about to do. Joking that if you put all our body parts together, we made up a whole person. How refreshing it is to be in the company of people who could actually understand these types of morbid jokes and genuinely laugh with you.

img_1955

The ladies with Richard Schmidt

Another powerful moment was when us girls stood in the living room revealing our scars. Mine have never been seen by anyone other than my husband and medical staff, so this was pretty big. I saw many nipple-less breasts and they saw my ginormous abdominal scar, which is the shape of a Mercedes-Benz logo (the actual surgical incision name). It was a liberating moment and I would’ve never done this with any of my non-cancer friends.

I’ll remember this experience and the stories of my brother and sister cancer fighters forever. First Descent’s motto is “out living it.” We had all been through so much, but were still here, out living what has killed others, together, in more ways than one and that was pretty rad, as they say.

“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming ‘Wow! What a ride'” – Hunter S. Thompson

To learn more about First Descents, check out their website at www.firstdescents.org

Read this on curetoday.comCancer Camp

Read all my articles with Cure.

img_2279

The “Minimavs” Team