Recovery and The Pre-Disease State

Friday, September 18, 2009

I’ve been thinking lately about the word recovery. In medical terminology, recovery is “a return to the pre-disease state.” A return to the pre-disease state.

We have, in our culture, an erroneous idea that we can somehow avoid change. That, should disaster strike, we can rebuild, take medicine, start over, and miraculously return to our previous (“pre-disease”) state. But we can’t, can we? We can’t ever return to the pre-disease, pre-divorce, pre-disaster state. The truth is, we can’t ever get back what we’ve lost, and that is what breaks our hearts in the aftermath of a tragedy.

I did the Avon 2-Day Walk this weekend (I’m still fundraising, if you’d like to donate) – the first event in my 40-by-40 series – and I guess I thought that completing it would represent my “return to normal life,” the first step on the road to being my old, active self again. I thought, if I do the things I used to do, I will get back to being the me I used to be. Before we even started to walk, though, I felt like a Vietnam vet at a Peace March. And for two days, everyone around me was walking to support or remember someone who had gone through what I went through, but I felt utterly disconnected from all of them. Only the survivors who cheered from the sidelines reached me – the women without eyelashes wearing baseball caps. Walking past them, I wondered if this is what concentration camp survivors felt like post-World War II, if they saw other skinny people with short hair, if they reacted to wrist tattoos the way I react to port scars, their heart sinking in the knowledge that their pain is not a solitary one.* On the walk, I would see a woman on the route, sometimes with her friends and family, sometimes alone, and think, I’ve been there. Every time I recognized someone clearly still in chemo, I would leave the walk to hug her hard and say, it comes back; it all comes back.

What I realize now is, I was wrong. It doesn’t come back. Your hair regrows and your scars heal, but you will never, ever get to be the you you were again, after cancer. The idea that you can take medicine and be the person you were before is a terrible illusion, one we maintain for the sole purpose of just getting through it. That is the tragedy of surviving something – you come out the other side of it different, unable to return to the life you had before.

The Hero’s Journey is the story of all survivors. It doesn’t ring true unless the Hero is changed by his experience. What happens, though, when the you that you are after cancer is not a person you ever wanted to be? I remember being in an ACS office earlier this year, staring at a poster for the Relay for Life, when someone said, “You can walk in the Survivor lap.” She meant it as a compliment, I’m sure, as an affirmation of my victory against a potentially terminal illness, but I started to cry, thinking, I never wanted to be in that lap. I wanted to be the one walking in support of the people in that lap, but I never wanted to be in that lap.

Women like my sister, who never imagined themselves as divorcees, fumble in their newfound singledom. My Aunt Audrey, who survived Katrina, sounded detached and confused when I talked to her after the storm, saying, “They said we would only be away a day, two at the most, and when we went back to the house, there was nothing left but a wall and the front porch. All my jewelry was in my bathroom drawer, and I don’t even know where that is anymore.” We tell divorced women to start dating and hurricane victims to rebuild and cancer survivors to wear pink ribbons, and it all feeds into this idea that we can somehow get back what we’ve lost, but the truth is, WE are the Orpheus in the story, NOT the Eurydice. We think that we can go into Hell and bring our old selves back with us to Earth, but we can’t. Try to look back, and we lose her forever.

In the opening remarks of the Walk, the announcer said that every three minutes, a woman is diagnosed with breast cancer. Moments later, she said that there are two million survivors in the U.S. alone. I thought, Jesus, that’s not very many. Dr. Bernie Siegel, in his books, talks about cancer being a manifestation of unrealized potential. The idea is that, if you deny your sense of purpose, your true path in life, all that energy manifests in your body as cancer cells that refuse to die. Cancer gives many people a new start: an excuse to be the person they never gave themselves permission to be. For others, though, the fallout is unsettling, disorienting, and discouraging. All they want, despite their very existence being threatened, is to go back to the way they used to be. When they realize they can’t, they have one of two choices: build a new life, with a new future, or give up. To be or not to be, Hamlet said. I wonder, though: who is the coward – the one who sleeps, or the one who chooses not to?

My grandfather said to me once, regarding his bypass surgery, “I sometimes wonder if it was worth it.” He struggled in his last months with horrible edema in his legs, which got so bad he couldn’t walk or drive a car. This man, who was the captain of a Navy ship, could not even go to the bathroom by himself. Realizing he could never be what he was before, that his future could never be the future the old him saw for himself, he took his own life. I often wonder if my mother felt the same disillusionment; if her suicide was the result of her life ending up in a corner she could not see how to paint herself out of. She was 39, divorced, without custody of her children, unemployed and mourning the loss of her own mother, with two failed careers behind her. To justify her decision, I tell myself that she was simply incapable of imagining her recovery from what must have been the hardest year of her life. Many women can’t, after disaster. They simply cannot see how life can get better, cannot summon the strength for another climb up the ladder. I have been there myself. Perhaps what has saved me is the other half of my genepool – my father, who was such a wonderful example of resilience. Twice divorced, laid off at 53 from a company he had worked with 24 years, he died from an enlarged heart the weekend before he was to open his first small business, six months before his first child graduated from a 4-year college. He died because his heart was too big. This was the same man who always told me, “Look 20 miles ahead,” perhaps to remind me that the solution to one’s problems may be far away, but if you can at least imagine it, you can get there one step at a time.

I play a game on my iPhone sometimes called BPop. There are five levels, each with the potential for scoring 10,000 points. I have gotten such a high score on it (29,000) that now, if I do not get 7,000 points by the first level, I reset the game and start over. Why play through four more levels if I cannot beat my highest score? Some people see a reset as a step backwards – a starting over at square one – and some see it as a second chance, to best your highest score. Your resilience after tragedy depends on your perspective, always.

This is what post-cancer looks like: resetting. Resetting everything. Building a ladder and climbing it one step at a time. You make lists of things to get through, things to check off, and those things are your rungs. Each time you reach a hiccup (an unforeseen infection, a claim rejection from your insurance), you start over, but you keep climbing. Two steps forward, two steps back (sometimes three steps back!). The progress from diagnosis to remission is mind-numbingly slow, and sometimes all you can do is count the days that pass, the days that mark the distance between treatment and non-treatment. You cannot say “between illness and health,” because you never feel healthy when you have had cancer. You are always acutely aware that it is something that can come back, despite your efforts, but the necessity of feeling safe in the world forces you to at least note the distance between the meat of your illness and this post-illness state where you are at least not being treated for it. As the distance increases, so does your security. At moments, you can even forget, during this post-treatment life, that you were ever sick. Time inevitably marches on, and I tell myself, I will have a day in my future when I do not have a doctor’s appointment next week, when I am not taking a pill to treat something that threatens my life. Perhaps on that day, I will feel, not like my old self, but like a person who has reached the other side of some deep lake I had to swim across.

Will I ever recover? I ask myself. No, I realize, but I can survive, as someone else. I can swim for the other side, where a new me awaits.