I've read The Anatomy of Hope, The Etiquette of Illness, The Lonely Patient - all of which address the themes reflected in this Times piece and which I've contemplated.
Two themes stand out. The first is the utility of denial, false hope, pretending optimism. The second is the utility of the fighting metaphor when dealing with illness.
Regarding the first, I don't deny the helpfulness of a positive attitude in the face of any adversity, including a body that betrays you. I believe in the body-mind connection and that the thoughts you have about suffering can affect your experience of suffering and that doing so is not belittling to the pain itself. In the Buddhist thought I've found so invaluable, there is a distinction between pain and suffering. You can have pain and not the suffering. Not all the time, not at all easily, but I have found that the thoughts about the pain can make the suffering worse.
I do believe that. But it's not that simple or facile. So that said, I do not believe that false hope is a cure all. I do not believe that people die or suffer because they didn't think enough positive thoughts.
I do believe that everyone should and has the right to cope in their own way. I think different aspects and personalities manifest differently. Maybe too because my disease is chronic and invisible, I do at times miss acknowledgment. Because I'm not hospitalized or bald or amputated, I am disbelieved at times and I feel discredited. So I want to jump up and down and scream yes, it's real.
Some find their distress too painful to speak of. I too sometimes find that is true. My old, extroverted, down-to-earth personality would get strength from being around others and from talking to others. But when I'm really in a bad spot, I can't talk and I withdraw terribly. I get strength from being alone. Sometimes that's purely true; sometimes it's because I discern no one wants to be around someone who isn't pleasant, who hasn't the strength to shower and be presentable, or wash her dishes and make her home presentable or is tearful and not filled with good humor.
Because that introversion is so different to my old self, that adds to the sense of disorientation and loss I feel in coping with my illness. But other times, I like to talk about it. I need to talk of it, complain even. And I don't like to feel as though doing so is vulgar or ignoble.
The point is that a person afflicted with illness, acute or chronic, should be able to cope in their own way, which may be different from time to time. That doesn't give a sick person the right to be angry if another doesn't respond as desired. The fact is needs are as mercurial as responses. Which highlights the need for patience and forgiveness and communication - both ways. For me, I figured out the ideal is to stay flexible and aware, mindful and yielding.
Sometimes I simply don't like sunny false optimism. That goes against the grain of my down-to-earth, tell-the-truth personality. Game faces are fake faces. I don't like untruths.
Regarding the second theme - the fighting metaphor, I've always hated the fighting metaphor for dealing with illness that is so pervasive in our culture. There are several problems with casting the illness as the opponent in a war.
- First because the illness is in our bodies, that means to some extent you are fighting yourself.
- Second, by declaring war, you give the illness power. Think of the War of Terrorism. That name, that paradigm gave Al Qaeda power it didn't have before. Doing so, elevated the opposition and gave it power. That's also why I have felt it's a mistake.
- Either the pain goes away completely (this rarely happens)
- or it's grip is loser. It's not gone but it doesn't feel as tight; I don't feel in a vise. If it doesn't exactly go away or float away, the pain feels as though it could. And yes, that possibility is a relief. When you're armed, tight and fight - that has never happened.
So with that background of my personal and pertinent views, here some quotes from the New York Times:
Whether such images (images of healthy, smiling Kennedy and Swayze) inspire patients, or reinforce unrealistic expectations that they, too, should maintain a game face, remains an open question, say doctors, social workers, family members and patients themselves.The downside and burden of such public images and what they encourage:
But Rachel M. Schneider, a clinical social worker at Memorial Sloan-Kettering Cancer Center, said that while many patients are inspired by celebrities, others feel guilty for not being as upbeat as the celebrities appear, and angry that the gravity of the disease may be misrepresented. By being constantly reminded that they should keep their chin up, patients implicitly believe that emotional wobbliness will adversely affect their outcome.
“Hopefulness is real,” Ms. Schneider said. “But patients say, ‘I have to be positive, I can’t cry, I can’t let myself fall apart.’ And that is a burden.”
(snip)Reality - as described by one cancer patient who admits fear and grief:
Dr. Joseph J. Fins, chief of medical ethics at Weill Medical College of Cornell University. “We only hear about those who handle it well,” he said.
And about that fighting metaphor:
Optimism, or even stoicism, were not part of his emotional makeup during those grueling months. “I never felt brave or courageous,” Mr. Kosinski said. “I don’t know what that means. I was scared. I was the furthest you could be from courageous.”(snip) It’s important for patients to realize that “there’s no scripted way to handle this,” Dr. Fins said. “They can write their own script based on their own narrative. “If we fail to meet patients where their grief has taken them, we have sequestered them off,” he added. “Then patients and families talk about platitudes rather than what they’re really thinking.”
Yes, I like the metaphor as a journey better - sometimes it feels like a spiral staircase, as Karen Armstrong suggested in her memoir. One step forward, two steps back; often times in circles but hopefully always ascending, always moving.
Dr. Gary M. Reisfield, a palliative care specialist at the University of Florida, Jacksonville, believes that the language used by cancer patients and their supporters can galvanize or constrain them. Over the last 40 years, war has become the most common metaphor, with patients girding themselves against the enemy, doctors as generals, medicines as weapons. When the news broke about Senator Kennedy, he was ubiquitously described as a fighter. While the metaphor may be apt for some, said Dr. Reisfield, who has written about cancer metaphors, it may be a poor choice for others.“Metaphors don’t just describe reality, they create reality,” he said. “You think you have to fight this war, and people expect you to fight.” But many patients must balance arduous, often ineffective therapy with quality-of-life issues. The war metaphor, he said, places them in retreat, or as losing a battle, when, in fact, they may have made peace with their decisions.
To describe a patient’s process through illness, he prefers the more richly ambiguous metaphor of a journey: its byways, crossroads, U-turns; its changing destinations; its absence of win, lose or fail.
About other problems with the fighting metaphor:
“The day of my last treatment, people congratulated me, but I felt blindsided by my reaction,” Mr. Haimowitz said. “I thought, ‘Oh my God, I have nothing left to fight with,’ and I felt angry that there was nothing left for me to do.” (snip) “The thumbs-up attitude is very important,” said Darren Latimer, 33, a banker in Chicago who had surgery for a malignant brain tumor in May 2005, and still receives chemotherapy. “You can be in the dumps very quickly in our business, the business of being sick. But can you fight your disease and not yourself?”This ending made me cry:
Yeah, just let me be where I am, without making me feel bad about my self pity. Let me be someone on a journey, sometimes difficult, hopefully with humor and perseverance. Let me yield to what is without being criticized for not being stoic, or noble or positive.
Brian Wickman, a manager at a luxury hotel in Manhattan, needed to reframe his loved ones’ language. Two years ago, an oncologist told him there was little published data about the aggressive tumor on Mr. Wickman’s ankle because it was so rare and because, “no one wants to publish when all the subjects die.” A month later, Mr. Wickman, then 30, a skier and a rock climber, had his left leg amputated. He was also found to have thyroid cancer. He reacted severely to chemotherapy, and spent two months in intensive care.
His awestruck friends would say, “ ‘You’re so brave, I don’t know how you do it, you’re my inspiration.’ They would put me on a pedestal,” Mr. Wickman said. “That doesn’t allow me to be human and in pain, angry or depressed.”
HIS e-mail messages reveal a spirit of great equanimity and eloquence: Mr. Wickman, who now wears a prosthesis and has resumed athletic activities, will attend graduate school in the fall for a joint degree in social work and divinity.
But in his darker moments, he refused to construct a front. He would write bluntly about feeling grumpy, frustrated and afraid nobody would date him. “This is not a call for pity responses,” he would add. “Just let me be where I am.”