Sunday, July 31, 2011

Faithfully Afflicted?

 It is good for me that I have been afflicted, that I might learn your statutes.
Psalm 119:71 Book of Common Prayer

I know, O Lord, that your judgments are right and that in faithfulness you have afflicted me.
Psalm 119:75 Book of Common Prayer

During the late winter of my sixth grade year I was diagnosed with idiopathic scoliosis—my doctor said idiopathic meant no idiot knew what caused it. I spent almost two years in a full body brace; the treatment was largely ineffective. Next came surgery to fuse vertebrae (this was before the doctors began using steel rods, so bone was taken from a hip) followed by six months in a plaster cast that enveloped my torso. This wasn’t the best way to go through puberty.
I searched long and hard for a reason this had happened to me. Various ideas suggested themselves, but the only one I came to rely on was expressed in these verses—that God in wisdom had afflicted me for some purpose not to be explained, but probably having to do with sin. (Sin was a big topic within the fundamentalism I grew up in.) I didn’t tell anyone my theory, except a Sunday school teacher, who told me that God never punishes little children. I knew she was wrong; even then, I knew the story of the bears that came and ate up the children who mocked Elisha. Not until I was in my late thirties did work with a therapist to address the damage done to my psyche during those “lost years.”
I have given up fundamentalism and its insistence on biblical literalism. I do believe the Bible is a holy book, a compilation of sacred writing, with wisdom to share. But I do not believe it is to be read literally. When I read and interpret the Bible in its historical and cultural context, I have discovered that it opens up the text as well as my heart.
So I’m sorry about the psalmist and whatever affliction he had to bear. I cannot believe in or worship a god whose teaching methods include afflicting the student. I cannot accept the notion that my cancers are a gift, a lesson, or a means of discipline from God—perhaps you can. I believe in a God who companions me, who takes suffering into the divine hands, as Psalm 10:14 says. My faith is in a God who is here with me, who wills good to come out of afflictions of all sorts.

Saturday, July 30, 2011

The Supportive Family—or not

I have become a stranger to my own kindred, an alien to my mother’s children.
Psalm 69:9, Book of Common Prayer

            I know that this verse has been applied to Christ, but when it was written, it applied to the life of the writer. We can’t know what the situation was; I’m fairly sure it wasn’t cancer, though cancer has been found even in dinosaur fossil remains. But the sense of being a stranger, an alien—bald heads, anyone?—is very much part of my experience of cancer. The disease separated me from the land of the well and gave me a whole new vocabulary, as well as an empathy for people’s sufferings that I’d not had B.C., before cancer.
            Until I got a part-time job at a place where almost nobody knew about my cancer, I didn’t appreciate how lovely it would be to have a cancer-free zone. I know people who have made their homes into sanctuaries where no one speaks of cancer. One friend said she’d come home from treatment, go to her bedroom and close the door—maybe for a day or two. Her kids and her husband coped, and just said, “Mom’s in her room.”
            I know other people who have relied on the excellent care and strength of family members. Another friend had a sister who, with her husband’s blessing, took the sick woman into her home for the last few years of her life. For many people, family is a compelling reason to stay alive. A third friend wanted to see her last child graduate from high school; others want to be here for grandchildren.
            When I received my diagnosis, my first thought was, Thank God my mother is already dead—this would kill her. I had left home at 18 and never returned for longer than vacations, holidays, and summers of grad school. So I didn’t feel close to the rest of the family. I bungled telling my brother—I found out, after all, the week before Christmas, and he already had multiple stressors at work. That was how I rationalized asking his wife to tell him. They sent a lovely care package and called regularly, rejoicing when things went well.
Assisted by Hallmark and other greeting card companies, we put a lot of freight on families. We may have expectations of them that are unreasonable, given our particular set of circumstances. We may be reluctant to be a burden, relying on a willing rota of friends or a system our faith community has instead.
            There is no right, wrong, or normal when it comes to cancer and the way our families respond.
We’re all just doing the best we can.

Monday, July 25, 2011

A Firm and Fixed Heart

My heart is firmly fixed, O God, my heart is fixed. I will sing and make melody.
Psalm 57: 7 Book of Common Prayer
 How did the psalmist do it, this fixing of the heart? (The fixing here is a steadfastness, not a repair job.) My heart has been all over the place lately, striving for gratitude and getting grumbling instead. Trapped in a heat-wave producing dome that has already taken the lives of some two dozen people in the Midwest, worried about my insurance and about job-juggling that’s about to get more complicated, pining for a vacation, my poor heart has been busy, but hardly fixed.
            As I thought about this, I remembered a collect (a prayer to gather our thoughts before worship begins) from the Anglican tradition. I’m putting it here in the old English, even though we don’t speak like this and my church uses the modern collects, just for the beauty of the language.

O ALMIGHTY God, who alone canst order the unruly wills and affections of sinful men; Grant unto thy people, that they may love the thing which thou commandest, and desire that which thou dost promise; that so, among the sundry and manifold changes of the world, our hearts may surely there be fixed, where true joys are to be found; through Jesus Christ our Lord. Amen.
           Clearly, the psalmist did not have the Book of Common Prayer handy. Perhaps the writer did know the key in this prayer, however. Love what God commands and desire God’s promises. Jesus summed up God’s commands as love God and love neighbor (Matthew 22:36-39). I’m not so sure what God’s promises entail, but I’d opt to include one of my favorites—Lo, I am with you always, even to the end of the age (Matthew 28:20). If I think and act in a loving manner—hmm, which I wasn’t yesterday—and if I remember that God is present no matter what, then perhaps my heart will stabilize.

Friday, July 22, 2011

A Broken Pot

 I am forgotten like a dead man, out of mind; I am as useless as a broken pot.
Psalm 31: 12

            The psalmist is human, and so gets in gloomy moods, just as we do. I think the writer is overstating the case. Today is the day we buried my mother, thirteen years ago; she is not forgotten. I hear her voice often, and the older I grow, the more I understand some of her ways. I find myself apologizing for not grasping sooner the toll age and disease can take on a body or a mind.
            As for the broken pot—well, it just depends on what you want it for. If the pot has only one purpose, and it’s too broken for that purpose, then yes, it’s useless. Broken things call forth creativity. I remember in college reading an essay in the Crack-up, a collection of pieces by F. Scott Fitzgerald. He speaks of the uses of a cracked plate, which is how he thought of himself by the time he wrote that essay. You could put leftovers in the fridge on a cracked plate, even if you wouldn’t use it at a company dinner.
            Cancer can make us feel, for the moment, forgotten or useless, but only for as long as we allow it. If I’m too tired to do anything requiring physical effort, I can pray for others. That’s not nothing. Even now, in remission, some nights if I have trouble sleeping, I start with friends on the East Coast and move west, praying for them in geographical order. I generally get to sleep by the time I reach the Mississippi. I have friends who knit warm hats and scarves for folks at the local St. Vincent de Paul.
We’re so used to measuring our worth by what we do that we forget to be. We forget that friends and family love us for who we are, not for what we do for them. It’s my mother’s kindness that I miss, her wry sense of humor, her street smarts, her creativity. And yes, her Christmas baking and the roses and tomatoes she tended, but those aren’t the first things that come to mind.
Many years ago, a pastor told me, “If a thing’s valuable enough, you fix it, you don’t throw it away.” He wasn’t talking about broken pots; he was talking about me, in one of the lowest, most difficult times of my life. Jesus said we are valuable to God, more than sparrows, more than broken pots. Cancer does not render us useless; we remain God’s beloved children.

Friday, July 15, 2011

The Future

 Mark those who are honest; observe the upright; for there is a future for the peaceable.
Psalm 37: 39, Book of Common Prayer

It would be presumptuous to call myself honest, upright, or peaceable, though I do try in each area. And I’m past the stage of “claiming” Bible verses for my own ends, although that practice served me well for many years. This morning, a few days after seeing my gynecologic oncologist, I focused on the amazing words there is a future.
            Other people have believed that I had a future, and a long one at that, when I found it impossible to believe. Tuesday marked some sort of turning point; my doctor said he expected me to continue to do well. This seems a step up from “cautiously optimistic,” which is what he said six months ago. We are making plans for annual visits rather than visits measured in single-digit months.
            I’m elated, of course, but also dazed. Cancer has been so much a part of my life for the past five years that it’s hard to imagine it being merely an annual event. It’s a bit like being finished with chemotherapy and being happy but unsure of what to do next. Without my chemo nurse two of every three weeks, weekly blood draws, anti-nausea meds, and regular confabs with the doctor, who was I?
            Cancer was like a cloak wrapped around me, though not a comfortable one. Perhaps a hairshirt would be a better symbol—it was scratchy, it was hot, it had fleas that bit me—except that I didn’t don it willingly and it certainly did nothing to improve my nature. Or the brace I wore for my scoliosis during middle school—that carapace on my torso became so much a part of me that I had to re-learn how to walk and move after the post-op cast was removed. And, oh, yes! I was lighter.
            That’s how I feel: lighter, freer. The recurrent-but-not-dangerous bladder cancer apparently is going to be with me always, requiring attention and vigilance. But the scary cancer, the one that could have claimed my life, seems to be resting; I’m afraid to use the words gone or cured. Too many women recur, even eight or ten years later.
            No one can be sure of a future. Life is far less predictable than we like to think. But on this sunny summer morning, with a lawnmower buzzing in the neighborhood and a cat asleep in the chair next to mine, I believe that I have one.

Tuesday, July 12, 2011

Level Ground

My foot stands on level ground; in the great congregation I will bless the Lord.
Psalm 26:12

Mountains are awe-inspiring, but I don’t much like them. I’m a prairie person and not fond of cities; I like to see where I am and where I’m going, and both mountains and skyscrapers get in the way. I don’t even like jutting sidewalks broken up by tree roots.
Israel is hilly country, so I can only imagine the comfort that standing on level ground gave to the psalmist. Terra firma, we call it, ignoring the possibility of earthquakes.
            This afternoon I returned to level ground after the funhouse-like effect of seeing a check-up for ovarian cancer on my calendar. I’ve spent the last few days feeling much as I did when trying to walk the first time I put on bifocals—the sidewalks kept coming up to meet me, the stairs were located in odd places. Perspective was skewed, if not lost.
            Yesterday, for example, I couldn’t find my driver’s license. It was in my purse, right where it was supposed to be, but I couldn’t see it. I was also having a mini-meltdown over my cat finding a second mouse in the kitchen. My stomach was upset. All because I was meeting my gynecologic oncologist, a man I adore—he did save my life, after all—who probably didn’t have bad news for me.
            Indeed, he did not. I am fine, he is pleased, and we will continue our twice-yearly meetings until January 2013, after which I will come only once a year in perpetuity. I enjoy talking with him—he’s one of those doctors who actually comes into the room, sits down, and doesn’t take his eyes off the patient. We cover other, non-cancer-related topics. He sometimes asks about my writing.
            Tonight I was privileged to talk to another woman who grew up in my hometown, one of the Midwest Rust belt cities. All the belts were whirring, the factories spewing toxins into the air and our child-bodies. She still lives in the area, and told me that studies were being done in the south part of town, because people there are dying prematurely. Her father died of a disease he got working in one of the factories.
            I am, in so many ways, one of the lucky ones, blessed beyond belief.

Sunday, July 10, 2011

A Firm and Steady Heart

[Those who fear the Lord] are not afraid of evil tidings; their hearts are firm, secure in the Lord. Their hearts are steady, they will not be afraid; in the end they will look in triumph on their foes.
Psalm 112:7 8

My church celebrates Christmas in July, always on the second Sunday of the month. It’s a reminder that the Christ comes among us when we aren’t ready and aren’t expecting Him. It’s a chance to sing the beloved carols and pass the light of Christ through the congregation once more—not in the deep darkness of midwinter, but on a sunny summer morning. It’s also an excuse for us to bring bags of children’s underwear and socks to the creche for Jesus, in his incarnation as the most vulnerable among us, the children. Later in the summer or early fall, our priest visits the local elementary schools with these gifts; the schools stock and distribute them as they see the need. And they do see it; we are a downtown church in one of the poorer neighborhoods of the city.
We depart from the lectionary on this Sunday, hearing instead the Christmas readings. I could probably quote most of Luke 2 from memory, but the story was new again this morning. My priest referred to the angels’ greeting: Fear not. Notice, she said, the angels didn’t say there was nothing to be afraid of. Just, Fear not.
I thought of other places in Scripture when people were told not to be afraid. The judge Gideon came to mind, threshing wheat secretly for fear of the enemy when he was told to take courage and deliver his people. There was reason to fear, but the command overrode reason.
This is a good message for me, two days before my twice-a-year checkup for the dangerous cancer, the one that gave me about a 50-50 chance of being alive in five years. (My gynecologic oncologist says the stats are wrong, but still, that’s what a woman diagnosed with ovarian cancer will read on the Internet.) I am four years out from the end of my chemo regimen without a recurrence. Yet. I feel fine, but I’ve learned that’s no guarantee.
I tell myself I’ve gotten better about being so scared by these check-ups. I used to call as soon as the office might reasonably be expected to have blood test results. There is no test for ovarian cancer, but there is a blood marker, the CA125. Not every woman is sensitive to this marker, but I am. So to call ahead of my appointment to hear that my CA125 is at 12 (under 30 is deemed “normal”) was just a way to remove pressure. But I didn’t call after the blood draw last week. I am waiting until Tuesday. And I flatter myself that I am not acting crazy in the meantime.
Fear not, the angels said, because there’s great joy in this child born to us. In the other birth story, Matthew calls him Emmanuel, God with us. I expect a good report this week; regardless of the test results, however, God is with me, and the proper response is not to fear.

Tuesday, July 5, 2011

The God Who Hides

Why, O Lord, do you stand far off? Why do you hide yourself in times of trouble?
Psalm 10:1

These questions can haunt us during the worst of our dealings with cancer or any other difficulty. After being widowed, becoming an empty nester, and losing the mother whom she’d cared for, my mother once told me, “Sometimes I feel like I’m the only person on the planet.” God seems far away, playing some cosmic game of hide-and-seek. Except it feels as if we’re not going to find God or to be found.
Although the questions may be perfectly valid in expressing how we feel, and we do need to express those feelings, I think they are the wrong questions. God does not play games with us. God loves us with a love we cannot begin to imagine and does not wish us pain—not even, as some would have it, to test us or to make us better. (I know people who claim to be better persons for having had cancer, but cancer’s had the opposite effect on me. I am a crabbier person with this disease.)
Instead of perceiving God as far away and hiding, we need to refocus and look for God in unexpected places. King Lear says that he and his daughter will “take upon ’s the mystery of things As if we were God’s spies.” Maybe it’s not that God hides, but that God delights in costumes.
Yesterday, for example, God showed up as a friend bearing a zucchini and black raspberries, as a magnificent rainbow after a downpour, and in a bright quarter moon so dazzling it competed with the fireworks display.
My problem is that sometimes I want to hand God my script of how my life should go. But God isn’t interested in following my scripts. God may be the ultimate improv artist, ready to do something amazing with whatever I toss out, or to toss a line to me to see what I will do with it. In the medieval period, this relationship was considered the Great Dance. It’s about moving to whatever music we hear, whether it’s Samuel Barber’s haunting “Adagio for Strings” or a rollicking Irish gig. It’s about trusting that Someone is there.

Sunday, July 3, 2011

The Cure for a Broken Heart

[God] heals the brokenhearted and binds up their wounds.
Psalm 147:3, Book of Common Prayer

When we are first diagnosed, the emphasis is almost totally on the physical aspects of cancer: remove the tumor and as many affected body parts as possible, treat with chemotherapy or radiation, have blood work and scans to chart progress. The effects of treatment are concentrated in the physical realm as well—manage the nausea, deal with the hair loss, adjust to the neuropathy or tinnitus.
            Sometimes the hospital may have a social worker, counselor, or support group as part of the package deal. I went to a therapist who was also a cancer survivor soon after I finished chemo. I didn’t see how I could manage one more thing during the treatment itself, or I’d have gone sooner. Too often, people are told unhelpful things: Be glad you’re alive or Hair grows back. We are asked to be complacent, if not downright cheerful, about having cancer.
            For us and for our caregivers, though, a broken heart may be part of the picture. No matter how early the cancer was caught, there’s the tiny fear of not living out our days, not finishing the work we’ve been given to do, whether it’s raising our children, being there for grandchildren, or some wider ministry.
            I’ve been dealing with cancer for five years now, and I still haven’t gotten used to the sadness and fear. My heart is broken, not for my own children or grandchildren (I have neither), but for the children at church I may not live to see grown. I ache for the carefree days of feeling fine and assuming I would remain so indefinitely. I miss the freedom of not having regular check-ups and procedures, not worrying about the outcomes.
            It’s hard to talk about this with anyone except other cancer survivors or trained therapists, because people who haven’t had cancer don’t, and can’t, understand. My gynecologic oncologist teaches at a local university, in addition to maintaining his practice. He told me once that he instructs the students, “Never tell a woman you understand what she’s going through. You don’t, and it’s insulting.”
            So we are left to mend our broken hearts as best we can. The good news is that we are not alone in this effort. God is with us, able to heal the heart, bind up the wounds. The scar from my major surgery has faded, but the psychical scars are still there. Those are the ones that only God can deal with.

Saturday, July 2, 2011

Father-Mother Care

 Like as a father pitieth his children, so the LORD pitieth them that fear him.
Psalm 103:13, King James Version
The mother’s service is nearest, readiest and surest: nearest because it is most natural, readiest because it is most loving, and surest because it is truest.
Julian of Norwich, Showings, Long text, ch. 60

            A little background: I learned to sing the psalm’s words when I was in high school choir. John Ness Beck’s arrangement (which has become a staple in church and school choirs) echoes in my head when I come to this psalm. I was in my forties before I read Julian of Norwich, who has garnered a lot of contemporary attention because of her theology of Christ as our Mother.
            Yesterday before I left for my surgery, Beck’s music was playing in my head. I had time to listen to a high school choir perform it on YouTube, so that the loveliness stayed with me. I believe in a father’s loving care—I was a Daddy’s girl, after all. I like men, but in the past five years especially, it’s the care of a motherly woman that I want as I deal with cancer.
            My mother has been gone now for more than a decade, but I am blessed in my motherly friends, not all of whom are female. I pushed away a lot of offers for help during chemo, which was nothing but pride. Some of those offers came from men; however, I’ve found the company of women to be more soothing in general.
            A surgery date brings out the best in these maternal friends. One called the night before this surgery, just to see how my spirits were. She also came to spend time with me last night, with groceries in hand. One friend called the morning of surgery to tell me she’d be thinking of me. Another friend took me to the hospital and waited, then drive me home and spent a few hours with me so I wouldn’t be alone, despite the fact that this was an outpatient surgery. My priest, who is a woman, asks me to call after each surgery. One of the nurturing males in my life called to see how the procedure went and how I was feeling.
            I kept thinking about these texts, however, and all the women who ferried me to chemo sessions, waited during procedures and surgeries, brought food, made prayer shawls, did my dishes, and told me I’d make it. They have been the feminine face of God for me, showing the compassion of a mother.