Tuesday, November 2, 2010

#269: Talking About It Helps

I haven't written much about the support group I've been attending. Early on in this adventure, a reader mentioned how much meeting with other survivors had helped her mother during treatment. The Markey Center has a lot of groups like that, including one for Head and Neck Cancer fighters and their families.Some of us are just starting radiation. Some have been cancer free for four or five years. We are each on a unique journey, but we share experiences that people who haven't had months of radiation shot into them or gallons of Sisplatin pumped through their veins don't really understand.

The group meets once a month. Some of us appear to be perfectly healthy and "normal." You wouldn't know we'd ever had cancer if we didn't tell you. Others of us have been severely disfigured by our disease and  treatment. We gather together to tell one another the truth. How our food tastes. How the new teeth are fitting or the hearing aids are acting up. We talk about what we do when someone wants to take us to a restaurant or when we try to have sex. Our spouses tell stories of watching us sweat or throw up in the middle of the night while the can only stand by helplessly and watch.

And through it all, we share a common message: you're not alone. Little by little, it's gonna get better. We don't pretend it isn't hard or that it doesn't hurt. Twelve-steppers call it "rigorous honesty." We tell the truth. But part of the truth we tell is that every one of us can beat cancer, even the ones who eventually die from it. It doesn't have to destroy our spirits.

Frequently someone from Markey has a presentation on some issue of particular interest to the group. We might talk about drugs and side effects. One month we had a couple of speech pathologists come in to talk about how treatment can effect talking and swallowing and what you can do about it. Today the team's social worker spoke about an issue close to my heart: "Cancer and Depression." The pattern of the meeting was pretty typical. First the "expert" tells us what the books say. Then the real experts talk about living through it. Now, even though I don't always recognize it, I still love the sound of my own voice. When I know about something, I can talk for hours about it. I have been studying depression for most of my life, so my after dinner speech is at the ready. Today, I resisted the urge to delight the group with my pearls of wisdom. I gave listening a try. I was glad I did.

What I heard took me by surprise. We are used to encouraging one another. It's a very positive group. We share our problems and we share our hope, but it's pretty rare that we really dig down into the dark places in our hearts. With that many wounds in one room, you don't really want to start picking at scabs. Today, each of us took off the bandages and showed what was underneath. Turns out that I am not alone. Sometimes it's the diagnosis that throws us for a loop. Sometimes it's the ordeal of treatment. But most commonly it's the limbo time after treatment is over.

For weeks we have whole teams of people looking after us. Doctors and technicians asking how we're doing. Friends dropping by. Nutritionists checking on our diets and our weight. Even the dentist and the psychiatrist give a friendly prod now and then. Every day there is something to do. Every day you know that dozens of people are working and worrying and praying for you. Then all of a sudden, it's over. You don't go to the doctor every day, you go every three or five or eight weeks. Your spouse goes back to work. The people who checked in so often tell you how happy they are for your positive results and get on with their own lives. You want to join them. But for a million reasons, you can't. Turns out that for a lot of people, that's pretty depressing.

And there's another thing. Unless you're an exhibitionist like Pennsy, it's hard to talk about being depressed. After all, you've just had your life saved from cancer. What do you have to be sad about? People can understand cancer. It's real. It shows up on a CT scan. You can cure it. Mental disorders are a little harder to pin down. You don't have to be ashamed of having a tumor. Staying in bed for a week can make you feel pretty bad about yourself. I may not have many personal boundaries, but it is a lot easier for me to talk about my cancer than it ever was to talk about my depression.

Which is why it was so good to hear other people's stories. So good to tell my own. We reminded one another that even in this, we were not alone.

This is why we all tell stories, I think. Bible stories. Campfire stories. Stories about our families. Plays. Novels. TV sit-coms. We tell stories to let the rest of the world know we are here. We listen to let ourselves know that we are not alone. In Thus Spake Zarathustra, Nietsche said:
Of all that is written, I love only what a person hath written with his blood. Write with blood, and thou wilt find that blood is spirit.... He that writeth in blood and proverbs doth not want to be read, but learnt by heart.
To write with blood is to tell the truth. Rigorously. The truth is not always obvious to the casual observer, just as it is not always easy to identify a cancer survivor. The face may decieve, but the story - the blood story - tells the truth. Every one of us, no matter what we have endured in our lives, shares certain truths. We all have our own story, but none of us is alone. You can't always see that on the surface. Sometimes you have to peek under the bandages.

Living blood stories isn't always easy. Telling them never is. But sometimes, when you really need to hear them, it helps.



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