Wednesday, January 28, 2015

Don't Just Put On a Happy Face

WANTED: Someone who will let me speak my mind about this terrible disease, without having to be brave or positive or sun-shiny. Someone who will let me blow off steam and rant, someone who will let me feel negative and speak my fears about what lies ahead.

DESPERATELY SEEKING: Someone who will let me say that I am scared about what might be. That this disease freaks the crap out of me. Someone who will let me not be tough for a few minutes, but break down and cry about my anxieties.

I may get some static for this post, but I think that there is too much pressure on cancer patients to stay upbeat and cheerful all the time, dancing through treatments and smiling during scans. "You can beat cancer with a positive attitude!" Bah, if only that were true, I wouldn't have lost so many friends to cancer. On the contrary, it is perfectly natural – even healthy – to allow yourself to imagine various possibilities of what could be. If you have ever watched children play, you would notice that they act out "scary" scenarios as a way of understanding the world. Virginia Koste tells a powerful story in her book Dramatic Play in Childhood: Rehearsal for Life, about two children pretending to drown in a swimming pool. Their mother was alarmed at first, wondering why they would play at something so terrifying. She came to realize that by acting this out, they were diffusing their fear, and working through what they would do in that situation.

Few adults play-act these kind of scenarios as expressively as children, but we still run through them in our minds. How many times have you mentally rehearsed a difficult conversation before having it? How often have you played out "what if" scenarios in your mind? We instinctively know that these rehearsals help us feel ready to deal with challenging situations.

I understand the impetus from well-meaning friends who interrupt with "don’t say that, just stay positive!" when you talk about fears of what may come to pass in your cancer treatment, but they don't seem to understand that speaking about these anxieties is a means of release. The patient ends up feeling like she has to act happy and fine all the time, and stifles the desperate need to talk through all of this. Unfortunately, oftentimes caregivers feel the same responsibility to put on a happy face around their loved one with cancer, lest they bring him down or pierce the bubble of positivity. It ends up becoming a farce-like scenario you might read in a "Missed Connections" ad, where both people are looking for the same thing and don't realize that it is right in front of them.

As I mentioned in "Dedicated to the Caregivers" I have a phenomenal caregiver for a husband. And while he is often the one who brings me up when I'm feeling blue, I cherish the conversations we have where we let each other know how f---ing terrifying this is. In fact, one of my favorite memories happened a few months after my diagnosis, when it had finally all sunk in. By this time, we had cried rivers of tears and we were starting to accept our new cancer landscape, coming to grips with how totally bizarre and surreal our lives were now. We were talking with a friend about my diagnosis, and the friend said,
"But they caught it early right?"

"…No, no they didn't."

"But they can treat it and you'll be okay, right?"

"…No, no it's actually pretty bad."
And then my husband and I burst out laughing. Really, you can only cry so much, then you just have to laugh. If we hadn't been able to talk to each other freely about all our fears, we wouldn't have been able to share a laugh over how absurd this all was. (Our poor friend looked a little startled.)

Of course, this goes far beyond cancer. How often do we hide what truly bothers us, pushing aside what we really want to say or do because we are afraid of how others will react. I say, go for it! Speak about it. Be bold. You may find that you are less alone than you think, and you can laugh together rather than crying alone.

Originally posted at:


Unknown said...

I understand exactly what you wrote about. I have lost 4 family members because they are wanting to stay ignorant about my condition. I have stage 4 metastatic Carcinoid Syndrome. I was misdiagnosed for about 4 years. It was diagnosed at stage 3 on December 27 2011. It went into stage 4 last summer. I stay "positive" most of the time and I don't talk about my illness unless someone asks. And unless they are close I usually respond with "I am doing ok". I had bad results from a CT and labs 2 weeks ago and I kept it to myself for a week still I broke down in front of my wife. It was such a relief to get it out of my head.

Lil-Lytnin said...

Thank you for your comment, Nigel. I'm so sorry your family was not able to accept your condition. I do push cancer out of my mind a lot, because dwelling on it all the time becomes overwhelming. But when the hard emotions come up, I think you really have to deal with them. I'm so glad you were able to be honest with your wife, but I'm sad to hear you got some bad test results. I hope there are more treatment options for you. LIVE EVERYDAY indeed!

darrell_f said...

You should not get static for this; certainly you won't get static from those of us that share the same diagnosis. Your message is one that I want to shout at the top of my voice, but I don't. I'm sure sick of hearing about the 'positive'.
Thanks for writing this.

Anonymous said...

Thank you for writing this. I know exactly how you feel. One day I had had enough of keeping everything inside and putting on a happy face when I was feeling anything but happy. I insisted someone listen to me. I had fears and emotions I had to let out. I felt so much better afterward.

Lil-Lytnin said...

darrell_f - Much to my surprise, I have received zero static for this. The response has been quite the opposite. I got one great comeback that you might want to use: "The only thing I am positive about is that lung cancer sucks."

Lil-Lytnin said...

Anonymous - I'm so glad that you found someone who would listen to you and let you get it all out. That is so important as we struggle with some really difficult stuff. Best of luck to you.