Saturday, March 30, 2013

We Are Easter People

I have an Easter memory from years ago. I was living in Washington, DC, and that year was a low point in my life. My older sister had recently died and both of my brothers were seriously ill; my best friend was leaving town, and on top of that I was questioning my work.

In my journal that April I wrote, “Am I depressed?” When I read those pages now I laugh and shake my head. “Depressed?” That I even had to ask. In that long year I thought I’d never laugh again, just as I thought I’d never again feel love, the joy of easy friendship, or the satisfaction of good work.

I went to church that Easter out of both habit and desperation. I had grown up in a church going family. It was what we did. And so to honor the family that I was losing I went. I chose a big downtown church for Easter services—one with hundreds in the congregation--not daring to visit a smaller church where I might have to speak to people or be embarrassed by my own tears. I wanted the paradoxical safety and anonymity of being in a crowd. 

The minister that Easter Sunday said many things that I don’t remember but one sentence has stayed with me all these years. He said, “We live in a Good Friday world…”  That I understood. A Good Friday world is a world full of suffering, questioning, unfairness, trouble, mistakes, hurts, losses and grief. That was certainly confirmation of my life that day. “But”, he continued, “We are Easter people.” Those words stopped me cold. I was stunned to be reminded that painful morning that there was something other than what I was feeling.

My life was not instantly transformed; his words did not change the course of my brothers’ illness; nor give me answers to my questions. But the idea of being “Easter people” gave me a pause in my grief and the teeniest hope that there really did exist something other than pain.

Today all of the things that hurt so much back then have changed. As my brothers died friends came forward to help. I began to write and publish. Months later I fell in love and moved to upstate New York where a new life began with new friends, new work and yes, of course, new problems.

What strikes me now is that this believing in “Easter” in the midst of “Good Friday” is as much about being an American as it is about being Christian.  Americans are, by character, a people of reinvention. There is an extra layer of intention that we bring to “new life” that isn’t true even in other predominately Christian cultures.  As Americans we are future oriented, we look forward not back, and we are, for the most part, a culture of optimistic, hopeful people.

The gift from that Easter service many years ago was the reminder that we are, by religion or culture, a people who believe in possibility. When our hearts are shattered we are sometimes shocked to discover that there is joy as well as pain inside. Out of the ashes of our mistakes, from our defeats and even our despair, we rise again in better lives.

Wednesday, March 27, 2013

Illness is a Place

I’m reading a wonderful book called “The Life You Save May Be Your Own,” by Paul Elie. It is a four-part, simultaneous biography of four great spiritual writers who were also social activists and great thinkers: Thomas Merton, Dorothy Day, Walker Percy and Flannery O’Connor.

I’m learning so much about these four friends. How fascinating that they corresponded, read each other’s work, acted and interacted on behalf of their Catholic faith, social justice and literature.

One of the gems in last night’s reading is from Elie’s section on Flannery O’Conner who wrote, “A Good Man is Hard to Find” and a famous collection of stories called, “Everything That Rises Must Converge.” Elie writes about the late part of O’Connor’s life when she was ill and disabled but writing to make sense of her life even in that. He quotes O’Connor as saying,

“In a sense sickness is a place, more instructive than a long trip to Europe, and it’s always a place where there’s no company, where no body can follow.”

We sometimes talk about illness as a battle or a struggle and here, O’Connor sees sickness also as a place that can be inhabited. Very nice.

Saturday, March 23, 2013

Get a Second Opinion, like How?

In serious medical situations --any time a procedure is called for--we are advised to "get a second opinion." But exactly how do you do that? Many times the surgery or treatment is urgent--they want to do it now or tomorrow or next week. If you live outside one of the big cities: New York, LA, Chicago etc. how do you find the second expert?

Even if you have a name or a hospital how do you talk to your current doctor? Self-advocacy is recommended but it's tough. We are dependent on our doc so it can feel hard to say, "I want to consult with someone else." And most times when we say that it is our own doc giving us the two or three names that are his colleagues. Those are folks he works with frequently--they do his second-opinions and he does theirs. So it's not exactly arms-length.

How do you get the best doc?  The truly top expert on your illness, cancer, disease or surgery? Most of us talk to friends, and friends of friends  but now there is another way to do this.

In today's Wall Street Journal is an article (see the link below) about ConsultingMD, a new second-opinion firm that can provide access to experts around the globe and they can review your data and reports online to advise from long distances. Here's a compelling fact: In 60% of cases reviewed for a second opinion an alternate treatment is recommended--and that course is often cheaper and more conservative.

So take a look at the article below and save this for when you are a friend are looking around.

Saturday, March 16, 2013

Caregiving is a Poverty Issue

Many times we talk or think about caregiving as a separate social issue from poverty or disability issues. We often picture caregiving in scenarios involving older folks with a well spouse caring for an ill spouse, or an adult child taking care of an aging or ill parent. Occasionally we extend that picture-story to those caring for someone with cancer.

But caregiving is also a poverty issue and it is frequently ignored even by those who are poverty advocates. Caregiver economics are part of caregiver stress. Part of the blind spot is that we rarely see past the crisis that throws a family into caregiving: the cancer diagnosis, the surgery gone wrong, the ICU, the nursing home. But poverty begins after chemo is complete and after the ICU and after the discharge to home. In most situations both employed adults have lost their employment—one to illness and one to caregiving. Few families can absorb one lost income, even fewer can lose two.

We also forget or don’t extend our imaginations to the flip side: How can families in poverty cope with stroke, heart attack, chronic disability and cancer—which is fast becoming a chronic disability. People living in poverty can’t go to Cancer Clubs and Chemo Yoga and they don’t have friends to drive them to treatment three times a week and friends in poverty can’t bring the extra hot meal. This is the hidden face of caregiving and these are hidden aspects of poverty.

Here are some stats from the National Family caregivers Association:

Women who are family caregivers are 2.5 times more likely than non-caregivers to live in poverty and five times more likely to receive Supplemental Security Income (SSI).
Study conducted by researchers at Rice University
and data compiled from the Health and Retirement Study
funded by the National Institute of Aging and conducted by the University of Michigan, 1992-2004
Caregiving families have median incomes that are more than 15% lower than non-caregiving families. In every state the poverty rate is higher among families with members with a chronic illness or disability than among families without.
Disability and American Families: 2000, Census 2000 Special Reports, July 2005.

During the 2009 economic downturn, 1 in 5 family caregivers had to move into the same home with their loved ones to cut expenses.
Evercare Survey of the Economic Downturn and Its Impact on Family Caregiving;
National Alliance for Caregiving and Evercare. March 2009

Sunday, March 10, 2013

The Twelve Steps Help Caregivers Too

I was in a Twelve Step meeting yesterday and as I listened to how people apply the practice of the 12 steps to many parts of their lives like with work, kids, in-laws, money etc. I started thinking about applying the steps to cancer and caregiving.

If you’ve not been exposed to the original Twelve Steps that derive from Alcoholics Anonymous you can click on this link

But I thought that they could be applied to caring for someone with cancer. You are the experts here so I’d love to hear your interpretation of how you’d apply the 12 steps to caregiving, but here is my quick and from the gut interpretation:

       ONE We admitted we were powerless…powerless over Cancer, over illness, over some doctors. And note that it says “we”…have to let that “we” into caregiving. I know how hard that is.

    TWO Came to believe…yes we need to believe in something bigger than us and bigger than cancer. Maybe it’s God or a Higher Power or maybe its Grace or Nature or the Ocean…just bigger than me.

      THREE Made a decision to turn it over…humility here..asking for help and surrender. Not giving up but surrendering that allows the universe to move and help us.

      FOUR Made a searching and fearless inventory…what of my stuff is getting in the way? My resentment? Being a control freak? Anger I am ashamed to admit to? Don’t be afraid to name it.

       FIVE Admitted to God, to ourselves and to another human being….this is the Support Group step. If you have felt it, said it or done it someone else has too. Reaching out to others, finding a safe place to say all of it.

       SIX Entirely ready to have …asking for spiritual help too. A pastor, chaplain, spiritual director, wise friend. Note: not a family member.

     SEVEN  Humbly asked…again, the support group. “I don’t know what to do?” “I don’t think I can keep doing this.” “Has anyone ever had to…”

    EIGHT Willing to make amends…yes you will snap at people, gossip, bring up old crap, be mean to the person you care for, …comes with the territory. So does, “I’m sorry.” And “Bear with me.”

     NINE Made amends…Ditto

       TEN Continued to take personal inventory…in a safe place with safe people. Yes, again the support group. You don’t have time to NOT go to a support group.

    ELEVEN Prayer and Meditation…yes, prayer and meditation. Every day. Even a little bit. “Please help me.” in the morning and “Thanks for getting us thru this day” at night.

    TWELVE Carry this message…even while you are in the worst of it you can help another caregiver. You can confirm their reality. You do this in waiting rooms, ICU centers and yes, in your support group.

Wednesday, March 6, 2013

Keeping Desire Alive in A Long Relationship

I recently watched the TED Talk by Esther Perel- on the Secret to Desire in a Longterm Relationship and I was impressed by several things starting with: Perel is smart and funny and frank. And she's clear that lingerie and new positions are not at the heart of keeping desire alive.

The other thing that  hit home listening to this talk was her characterization of the erotic as opposite of death or trauma. We know that cancer is a trauma and cancer is death--whether one's diagnosis is terminal or not cancer simply brings death closer to both partners in a relationship. It could be that the emotional proximity of death is as much a cause of a waning sex life as the physical side effects that come with cancer. But it's also possible, I think, to channel that death charge--it's energy after all-- into a powerful erotic charge to bring great sex back.

I invite you to spend 20 minutes watching Perel's talk using the link below.

Sunday, March 3, 2013

Amour--a movie about caregiving and true love

Last night we went to see the Academy Award nominated film, Amour. You know by now that it is a film about aging and about a couple trying to manage an illness and more.

It's a beautiful film--language of course, and scenery and yes it's French so we see a very French woman being very French even as she ages and suffers. In American movies we might question a coiffure and makeup on someone who is ill but she's French, c'est la vie.

What I didn't know was how well this film would capture the tedium versus crisis of caregiving and the  spouse versus adult-child boundaries. Just for those few scenes you should see this film. But it is of course, as the title suggests, a great love story. Maybe the ultimate love story.

The take-away is also great. We talked for hours afterward about "What if.." and "When we face this...". If you have struggled to initiate those conversations about end-of-life care or preferences  or who will do what then use this movie as a way to open the conversation with your partner, children and friends.

Here is the trailer for the film. It may still be at a theater near you or on Netflix or Pay-per-View.