When I was nine years old, I went to the hospital to have an operation on my eyes. Some of you might have noticed that my eyes sometimes focus a little differently from most people’s. I was born with my eyes crossed. So, when I was nine, I decided I wanted to have cosmetic surgery, and into the hospital I went. What I remember most vividly, 25 years later, was the IV. I had an IV in my hand that had to stay in for a couple of days after the operation, and if I just sat still it was fine. But if I moved just the wrong way, a searing pain shot into my hand, and it hurt so bad that it made me cry. I remember that pain.
But the other thing that I remember is that I never told the nurses about it. Even though it was the worst pain I had ever experienced in my life, I figured that was just the way it was. I felt ashamed when I jostled the thing, as if the pain were my fault for not being a good, quiet patient. I just kept my mouth shut and got through it.
In retrospect, it’s clear to me that something was wrong with the darn thing! Working in hospitals as an adult has taught me that IVs aren’t supposed to hurt like that. But at the time I thought it was something I had to endure, so I isolated myself needlessly from the very people who were there to take care of me. I learned the hard lesson that being sick and in pain can be hard not just because of the physical suffering, but also because of the ways it isolates us. Today I’d like to speak to you about illness and how we can help ourselves and others move out of that isolation toward reconnection. Part of the picture is the deeply personal and inter-personal issues of illness, and another part has to do with the way health insurance works, or doesn’t, to strengthen the bonds of compassion and solidarity in our society. In sickness and health, as we’ve learned in so many other realms, the personal is also political.
Let me start with the personal. I think one of the most disturbing things about being sick is the sense of isolation and estrangement we can feel from our bodies.
Now, not everyone would see this as a problem. The Jewish tradition tends to see the body and mind and soul as inseparable parts of a whole. But Christians were influenced by the Greek philosophical idea that the soul was superior to the body, and they have tended to experience their bodies as separate, in fact as a cluster of burdens and demands that the soul has to overcome. St. Augustine, the famous African bishop who lived around the year 400 CE, talks in his Confessions about his struggles to control his body and give up sex, which he believed held him back from serving God as he wanted to do.1 Over 1000 years later, Catherine of Genoa, an Italian mystic, wrote an imaginary dialogue between the soul and the body, in which the body tempts the soul into abandoning God for sensual pleasures, and the soul has to forcibly take charge again with God’s help.2
These are just two examples of the long-standing Christian tendency to split the self into soul and body. It’s been a powerful current. But in recent years, lots of Unitarian Universalists and other liberal religious folk have started to question that separation. People have started to ask, why should we despise our bodies? Lots of feminists especially have been raising this concern as we struggle against thousands of years of so-called wisdom that told women we were nothing more than weak and corrupt bodies.
It is a spiritual task for each of us, men and women alike, to appreciate the gifts of being alive and having a body. Our bodies let us see a beautiful sunrise, to taste an ice-cream cone, to hear a hawk crying on the wind. Our bodies let us swim in a lake and turn somersaults and type letters and give massages and connect with other people in wonderful ways.
Except when they don’t.
Our bodies do get sick. We hurt and ache and swell and sweat and bleed. Eventually, we break down and die. Elaine Scarry, an old professor of mine who wrote a book on pain, suggests that when we’re hurting very badly, we feel that our own body is separate from our inner self-in fact it feels like our enemy!3 To give you only a small example, once I came down with a headache in the middle of the night that was so bad that it woke me up. It didn’t go away even after I took some aspirin, and I began to get frightened that maybe something was seriously wrong. Maybe, I thought, alone in the dark-maybe I have a brain tumor; maybe I’m even going to die! And the “I” who was frightened was not the same as the pain in my head. The pain was something that was attacking me. It did pass, eventually, but not before I’d been reminded that being in a body is not always wonderful.
Here we are, people with bodies that sometimes hurt, bodies that will eventually break down and kill us. This is what it is to be human. And we know that people for thousands and thousands of years have been asking, why? Why do we have to get sick and suffer and die? What kind of world-what kind of God-would do that to us? These are questions that can make us feel isolated and estranged from the very power that brought us into being, however we choose to name it.
One person who asked these questions was Job. In the Hebrew Bible, Job is the perfect Jew-a man who we’re told is “blameless and upright, one who feared God and turned away from evil.” Satan is a character in this story, and here he’s kind of like God’s master spy, rather than the evil arch-enemy that we’re used to. He convinces God to test Job to see how loyal he really is. So God lets Satan destroy all Job’s possessions, kill all his children, and finally inflict a horrible illness on him. Job is covered with sores, and in an unforgettable image we see him sitting in ashes, scratching his sores with a shard of broken pottery.
Eventually, some of Job’s friends show up and try to tell him all the reasons why this has happened to him. Mostly, they’re a good example of what not to say to people who are sick: they tell him he must have done something to deserve it. This is a myth that dies hard in our culture. Susan Sontag, who died of cancer just a few weeks ago, wrote about how much it hurts when we assume people with cancer brought their illness on themselves by being too stressed out or too repressed or too whatever.4 This kind of thinking only isolates and punishes sick people today, and it did no good to Job either.
Finally Job, in despair and still in terrible physical pain, challenges God to explain. And God shows up! For a moment it seems there’s a possibility for reconciliation here. But God’s answer is actually quite cruel. “Where were you,” God asks, “when I laid the foundations of the earth? Tell me, if you have understanding” (Job 38:4). Basically, God tells him, “I am so much more powerful and intelligent than you that I have no need to justify my actions. You have no claim on me that I have to honor. I do what I do and that’s that.”
And that’s the end of the story. At least in the book of Job. It’s true, in the end, God is satisfied with Job’s performance under stress and cures his illness and makes him wealthy again. But we’re left with this terribly uneasy sense of estrangement from the divine power that Job had previously always felt was there to help him. And this is a hard fact about illness-for many of us, it does provoke a crisis of faith as we ask, have I been abandoned? Am I alone?
This, of course, is one of the very deepest questions of religion. To stay with Job a little longer, the psychologist Carl Jung has suggested that we can read the Bible as a novel about God. A novel about God-what a powerful idea! And what we find, Jung suggests, is that Job got under God’s skin. God was just blustering when he bragged to Job about all his power (and in the Hebrew Bible it was a “he”). In fact, God feels ashamed and decides that he has to become human so that he can understand Job’s suffering. At that moment the stage is set for the incarnation of God in Jesus, and a whole new possibility for God to relate to humans with a compassion born of direct, lived experience.5
Now, I’m not saying you must or should accept this reading of the Bible and the Judeo-Christian God whole-heartedly. But I want to share it with you because I really appreciate the idea behind it-that because human beings know what suffering is, we also know that we need compassion.
Illness isolates us, but reaching out compassionately can heal our spirit. When the IV was giving my nine-year-old self in the hospital so much pain, I didn’t know how to reach out and ask for help. But when my adult self was blindsided with that horrible, frightening headache, I did. I woke my partner up and asked him to please help by keeping me company for a little while. As soon as I did that, my fear receded and I felt more able to handle the pain.
Then, sometimes when we’re sick, we’re not so much fearful as angry and frustrated. It’s good to be able to vent those feelings with someone else. Humor helps too, partly because humor always connects us to other people. You can’t tell a joke unless someone else is around to laugh! Maybe some of you have been reading the Doonesbury strips following the story of B.D., a soldier in Iraq, whose leg was blown off at the knee in an explosion. Early on in his recovery, you know he’s on his way back to being OK when he cracks, “Hey, at least I’m finally down to my ideal weight!”
But sometimes, after the doctors and the medicines have done what they can, what we really need is for someone else just to be with us and our pain-not trying to fix it but just being there with us. Remember the woman with breast cancer in our reading [from Undercurrents, by Martha Manning]. She was tormented because she felt she couldn’t let her family see the sores and scars where her breasts used to be. She didn’t really need “therapy”; what she needed was to be with someone who could look at her wounds without turning away, someone who could accept her and say, yes, you are still a human being; you are not alone.
This is not easy. It’s not easy to ask for help, and it’s not easy to respond with that gift of pure presence and acceptance. But I know we can do it, because I’ve seen it happen in my own life and the life of this congregation. And it is profoundly healing to our spirit.
Well, I also promised you that I’d talk about health insurance today. And although it may seem like I’m clunking down from the sublime heights of spiritual reflection to the plain old wonkiness of policy reform, I am convinced that health insurance is as much a spiritual issue as a practical one. In a nutshell, health insurance is a system we’ve constructed to live out some of our most cherished religious values-dignity, justice, compassion, and interdependence. Reforming and protecting our health insurance system means making sure that we support each other financially as well as personally during illness. It means making sure that no one is so isolated and vulnerable that getting sick leads to financial ruin-or, worse, that being poor means not getting cared for at all.
We know that many of us are facing serious financial challenges because of the health insurance crisis in the U.S. One of my other favorite comic strips, Candorville, sums it up pretty well in a recent strip. Lemont, one of the main characters, is getting ready for bed and saying his prayers: “Now I lay me down to sleep; I pray the Lord my soul to keep. If I should die before I wake . . . it’ll be because I didn’t have health insurance and couldn’t afford preventive treatment!”6
Seriously, we are facing a major problem. Maybe you or someone you know has had trouble finding and paying for health insurance. If so, you aren’t alone. Let me share some statistics with you: Since 2001, the average annual cost to insure a family of four has gone up by nearly 60%. The Kaiser Family Foundation predicts that premiums will keep going up and up in the next few years.7 At the same time, many people’s insurance benefits are being cut. And people in the U.S. are already paying more out of pocket for health care than people in any other industrialized countries.8 I’ve seen this trend in action at my seminary, where student health insurance premiums have nearly tripled during my four years.
Meanwhile, a recent survey found that two out of five adults under age 64 had had serious problems paying off medical bills in the last year, or else were paying off medical debt they’d incurred in the last few years.9 That means over 40% of people in this country are experiencing financial problems because of medical bills. Chances are, that means people we know.
Another surprise: out of the 1.9 million Americans who declare personal bankruptcies every year, 1 million do so because of medical debts.10 And 75% of them had health insurance when they first got sick.11 Maybe you know someone like Henry Brandt, who had great health insurance (or so he thought) when he was diagnosed with severe congestive heart failure in 1997. Six years and five surgeries later, the insurance co-payments alone have nearly exhausted his life savings of $150,000.
Even for those of us who have decent insurance, this is an anxious time. Some of us stay in jobs we hate because we can’t afford to give up our insurance. This crisis affects all of us.
The origins of the crisis are extremely complicated, partly because we have such a complicated system of sharing the costs between individuals, employers, and government.12 So the solutions are going to be complicated too. Much as I would love to see our country adopt a single-payer universal health-care system, I don’t think it’s going to happen any time soon.
But the good news is that over 60% of adults surveyed recently said they’d be willing to give up the entire federal tax cut if the proceeds went to help guarantee health insurance coverage for everyone. Even people with the highest incomes, and the highest tax cuts, agreed.13 So there is hope, and I urge you to do all you can to support policies that extend coverage to more and more people who need it.
This really is a religious issue. It goes to the heart of so much of what we affirm as religious people. Good health insurance is about “justice, equity, and compassion in human relations.” It’s about justice because we affirm that it’s not right for anyone to be financially ruined because of illness. Right now, it’s also a justice issue in our congregations. Many Unitarian Universalist congregations have found it very difficult to afford health insurance benefits for their ministers and staff members. How to find decent, cheap insurance is a perpetually popular topic on the national ministers’ email chat list that I participate in. Right now the Unitarian Universalist Association is trying to set up a group insurance plan for ministers and church staff, and many of us are hoping they will succeed, the sooner, the better!
Health insurance is about equity because we affirm that every person should have access to good medical care without regard to how much money they have. And it’s about compassion because we want to ease each other’s burdens when we’re sick.
Health insurance is about individual worth and dignity. Being seriously ill is enough of a strain without having to worry about financial catastrophe. Illness can be the most profound challenge to our understanding of what it really means to have “inherent worth.” It can be terribly hard to affirm our own inherent worth and dignity at a time when we can’t work and can’t take care of the people we love-when we’re stuck in a hospital gown that hangs open and shows our rear ends to a multitude of doctors and nurses. It’s a real challenge because so many of us secretly believe that our worth as human beings is really dependent on what we do and what we look like. When we’re so sick that we can’t work and we look like hell, we can feel alone and afraid. And that is partly because our society right now has decided that not everyone really is worthy of equal protection. If our society can change to affirm the dignity and worth of all people, by protecting us with decent insurance, that is a spiritual choice as well as a material one. It’s a choice against isolation and for human connection.
Most of us are going to confront serious illness in our lifetime, and in the end we all have to die. There’s no protection against the ultimate dissolution of our bodies. But health insurance helps prevent the dissolution of our material resources. It protects the people we love while we’re sick and, eventually, after we’re gone. We all try to pass on our care and love in ways that endure-just as Uncle George did with his nephew in the story we read earlier [Beautiful, by Susi Gregg Fowler]. Insurance helps us do that in a different way, and in this sense it fills the profoundly spiritual need to maintain a sense of caring connection with our loved ones, even after our death.
And finally, health insurance is about “respect for the interdependent web of all existence of which we are a part.” The fundamental principle of insurance is that we all pay into the same pool so that we can subsidize anyone who needs it. That is interdependence-of a sort created and sustained by human compassion and ingenuity-which we voluntarily embrace for the good of us all. That is connection-it’s how we create practical bonds of solidarity that help protect every person in our society.
We have such an opportunity here. Every single one of us will be touched by illness one day. And we know, we really do know, that there are ways to make it easier to bear. The key is moving from estrangement to connection-day by day, in the macro-world of health policy reform just as much as in our most deeply personal encounters. That way lies the world we want to see-more love, more hope, and more joy. In sickness and in health, so may it be.
Amen and blessed be.
Laura Horton, Student Minister
UU Congregation of Rock Valley, Rockton, IL
January 23, 2005
© 2005 Laura M. Horton. All rights reserved.