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.

Review: All These Wonders

imagesAs a writer, I am reading all the time. Recently, my entire library waitlist came in at once and I found myself picking up fifteen books – all due back in three weeks. Geez, Louise, I better get busy.

What fills me with amazement is how the right book always lands in my palms at the right moment.  The universe just seems to know what we need and when we need it.

Let me share an example.

Last month, I traveled to Michigan to spend the week with my 86-year-old grandmother to hear any story she was willing to share with me about her life. I brought the two books that arrived at the library the day before I left, Moonglow and The Rainbow Comes and Goes.  I had no idea their premise but reserved them based on a recommendation. “Coincidently”, both stories were about characters spending time with an elder in their family. I can’t really explain it, but that’s just how these things work.

With a generous selection on my shelf, this week, I grabbed All These Wonders, a compilation of short stories previously performed at The Moth storytellers series. And wouldn’t you know it, the subtitle is, True Stories About Facing the Unknown. An especially relevant subject since I was dealing with facing some unknown myself this week.

So, I’ll share a few stories from the compilation that I think cancer survivors and/or anyone impacted by illness might appreciate. What I love about these stories is not the common theme of disease, but what happens before, between and after the character’s confrontation with disease. Reading these reminded me, it’s not illness what makes our stories wonderful and interesting and worth reading and hearing – it’s the moments in between and after illness enters our lives. However, the irony of it all is that without those bitter moments of illness, the moments in between and after would not be as sweet.

Ugh, it’s a double edged sword, people.

I hope you enjoy these wonderful stories and that they come into your life when you need them the most.

FAVORITE: It Matters A Great Deal by Kevin McGheehan
A son plans the party of a lifetime for his mother.

SUPER COOL: Who Can You Trust by Mary Claire-King
A doctor battles through heartbreak to make a breakthrough in cancer research.

SWEET: Kidneys and Commitments by Gil Reyes
A man receives the best gift ever from the love of his life.

10 Lessons for the Newly Diagnosed

Anytime a friend or family member knows someone newly diagnosed, they get sent my way. I love this because I believe in mentorship, but I hate it because it’s a role I never wanted. Actually, I don’t think anyone wants this job.

When I connect with the referral, I often find they’re looking for words of wisdom and my reaction is, You’re coming to me? OMG! I have no idea what I’m doing. But, when I take a step back and meditate on the years since my diagnosis, I realize that I have acquired a significant amount of wisdom on navigating the maze, so below you’ll find some of my biggest lessons learned along this crazy road:

  1. Prepare for bad days. They’re inevitable. I created a list of things to do on when cancer or life gets me down. On my list: take a walk, call a friend to hang out, go to yoga or for a run, watch Jimmy Fallon Lip Sync battles, you get the idea. Doing these things doesn’t always turn a bad day good, but aides in soothing me so it’s not as torturous. But guess what, there will be good days too. Enjoy those.
  2. Choose your vocabulary. I hate being called a “cancer patient” and prefer “cancer survivor”, which I assigned to myself on diagnosis day. I also decided not to claim cancer by choosing to refer to it as “the” cancer and not “my” cancer. Sure, it’s a play on words, but words matter and have power. I often roll my eyes at cliche verbs such as fighting, battling and nouns like warrior, but I can see where others find great power in these words. This is your experience and you get to choose the words to describe what you’re going through – not prepackaged phrases or cliches.
  3. Limit your research. Yes, you read right. Google’s search results can be overwhelming. While being an informed patient is critical, there comes a point where it’s too much. Set a timer for an hour, do your Googling and then go live your life. It might even be helpful to plan your research at a specific time of day. I don’t Google in the evening. Otherwise I stay up all night thinking. I Google before something fun, so my mind does not dwell on the results for too long.
  4. Prepare to learn the meaning of friendship. There were people who showed up for me, who I considered acquaintances before illness. They were people who called, texted, sent me cards, cooked me dinners and took me to appointments. Words cannot express my gratitude for these angels and I would go to the ends of the earth on their behalf, as they did for me.There were also friends I considered close, who went missing in action. I’d be lying if I said it didn’t hurt. I understand – cancer is uncomfortable and not fun, but I now know the true meaning of friendship.
  5. Think about what you will do on the other side. I can not accept that we are given these obstacles for no reason. I think it’s important to discover meaning or the lesson in a traumatic experience. Do you want to help others affected by the disease? Awesome. Or do you want to erase the experience from your memory? Totally understandable. Whatever category you fall into, do something! Take the trip you’ve been talking about for years. Write the book. Run the marathon. Jump out of the plane. Make amends with the family member. If cancer teaches us anything, it’s that there are no guarantees, so minimize your chances of regret.
  6. Get a therapist. Your doctor is leading the team on physical healing, but you can not ignore the mental, emotional and spiritual aspects. Cancer is a torturous mental challenge and having an outside opinion has been instrumental to me. Ignore this and you’ll miss important aspects of healing. Plus, it’s sometimes difficult to talk to those so close to you about big fears that accompany the disease since they themselves are so emotionally invested in you.
  7. Find a support group. It does not have to be traditional. It just has to work for you. I still have never been to one where you sit in a circle and cry, but I have met countless lifelong friends through a weekly writers workshop and a young survivors non-profit. I also participate in an online group of people with the same disease. It’s here where I found my specialist and often research treatments. I always thought of support groups as therapy, but they can also be a wealth of information.
  8. See a leader. No one will hold your best interests at the top of their mind the way you do and having the right doctor is game changing. Life saving, in fact. Don’t settle on the first doctor who crosses your path. Visit at least two or three. More if your case is rare. Find someone who’s doing research on your disease and not someone who’s following the pack. It took me several opinions to find a specialist who knew what to do with a one in 10 million diagnosis, but once I found him, my world changed. He disagreed with all the previous opinions and I know I am alive today because of his experience. I travel from Nashville to New York City to see him every six months and often look forward to hearing the research in his pipeline.
  9. Be relentless. It is exhausting and the only time I’ll ever refer to disease as a fight is in reference to navigating the medical maze. My doctors call me relentless and I take it as a compliment. I do not leave them alone (respectfully) and because of this, they return my call or email quick.
  10. Practice gratitude. It wouldn’t be a post from me, if I didn’t mention gratitude at least once. There will be days it will be hard to be grateful for anything, but believe me when I say, there is always something to be grateful for, even if it’s being alive, which is a privilege denied to many. Write these down. Re-read them when times are tough.

I’ve also learned these lessons are constantly shifting, evolving and revealing themselves. Cancer survivorship is a process and I am a grateful participant.  I wish the same for you.

Read my other Cure articles here.