Fighting Back with Joy

For several weeks, we’ve been reading Fight Back With Joy: Celebrate More. Regret Less. Stare Down Your Greatest Fears by Margaret Feinberg, and we’ve reached the end of the discussion. But not the end of the book, because this is a book that stays with you.

It finishes with “Bonus Tracks” – “5 Things to Say When You Don’t Know What to Say,” applicable not only to a cancer patient but also to any serious situation; “8 Things Those Facing Crisis Can’t Tell You (But Wish They Could);” “6 Lessons I Learned from Crisis;” “A Letter from Leif,” Feinberg’s husband and chief caregiver; and a playlist of music to accompany each chapter.

Each of the tracks (well, perhaps not the playlist) could have been books. Instead, they’re short, succinct summaries, wisdom learned the very hardest way – the wisdom that comes from living an experience that at many points could have ended in death.

It was the bonus tracks, in fact, that punched home something I knew from the beginning of the book but which I don’t think I acknowledged. Books are objects, yes, objects you hold in your hands or view on an e-reader like Kindle. You enjoy them or you don’t; you learn from them or you don’t. Good books become part of you; the best books change your life.

Fight Back with Joy is a giving book. Feinberg gives away a good part of herself in this book. One of the lessons she learned from her fight with breast cancer is that serious illness changes you. She may have been a giving person before it; she is a different giving person after it, a person who gives with God’s sense of giving.

It is a generous book. That’s not a redundant statement. Feinberg is lavish with her giving in this book. Little is excluded. If you want to know what experimental chemotherapy is like, or what to expect when you first look in the mirror after a double mastectomy, you will find it here. Or what you experience when you hair falls out in clumps.You want to know how difficult a cancer fight is for the primary caregiver, you will find that, too.

It is an honest book. Feinberg gets angry. She gets angry with God, with friends who don’t know what to say so they stop coming around, with her family, and with herself. There were days and times when she wanted to curl up in a ball and die.

Margaret Feinberg

It is a courageous book. Even being on the other side of the cancer experience, and having survived the cancer, its treatment, and related surgeries, it is clear that Feinberg never quit, although there were times when she wanted to. She fought, she fought with everything she had, everything her husband had, what friends and family had. She fought, too, with what God had, and what He had from the beginning was no guarantee she would survive. She fought with faith.

And Fight Back with Joy is a profoundly human book. Feinberg made a choice early on in dealing with the disease. She would fight with joy. There were days when there was no joy left, and yet it was still there. One of those days, when she found despair, led her to give away red balloons to fellow cancer patients and their families. She discovered the joy again, enough to continue the fight. And it is often the joy of a child, an adult who learns the joy of being a child of God.

This is a book for those who suffer a serious illness, and those who don’t. This is a book for caregivers to learn what to expect, and for those who are never called upon to be caregivers. This is a book for women and for men. It is about shock, and fear, and joy, and depression, and despair, and faith, and giving in, and fighting on when there’s little left to fight with.

This is a book that will change you.

Jason Stasyszn and Sarah Salter have been leading us in a discussion on Fight Back with Joy. Today concludes the book. To see more posts on the “Bonus Tracks,” please visit Jason at Connecting to Impact.

Photograph by Yiting Liu via Public Domain Pictures. Used with permission.

How to Throw the Best Party Ever

In  Fight Back With Joy: Celebrate More. Regret Less. Stare Down Your Greatest Fears,  Margaret Feinberg discusses one way she dealt with the awful physical pain she experienced with chemotherapy for breast cancer.

She threw herself a party.

Actually, she threw herself several parties. She celebrated, by herself, with her husband, and with others. She partied, she ate good food, she grabbed on to savor everything good thing life had to offer.

The partying had a purpose. It was an act of defiance, defying a disease and a course of treatment that is devastating physically, emotionally and spiritually. But defy she did. She fought back with celebration.

All this partying and celebration brought to mind Mickey Easterling.

From the time I was 8 or 9 to my senior year in college, I spent a lot of time at my father’s printing business in downtown New Orleans. Most of that time was spent working – especially weekends and summers – and some of that time was spent partying, like at Mardi Gras.

During the work times, I learned how to do just about everything – operate the printing machines, the paper cutter (a small guillotine), the postage metering machine, the collating machine, the addressograph, and even a machine that tied packages in string. I made deliveries all over downtown New Orleans and the French Quarter. I took checks to the bank. After I turned 15 and got my driver’s license, I drove big bags of mail to the New Orleans Post Office.

And I met a lot of unusual people.

The office was often a veritable parade of politicians, candidates, socialites, businessmen, non-profits and others seeking printing and mailing services. Once (when I wasn’t there) a young man came into the office seeking to have pro-communist propaganda printed; my father showed him the door. The young man’s name was Lee Harvey Oswald. After the assassination of President Kennedy, the FBI was crawling all over the downtown business district, tracing Oswald’s footsteps and activities, and they interviewed my father because of that one short meeting.

The parade of customers included quite a few local “characters” and celebrities, and one of them was a socialite named Mickey Easterling. She was a small woman with a large (very large) presence, given to flamboyant clothes and a distinctive, loud voice recognized anywhere. I remember seeing her many times, in my father’s office as well as her own office and home. She was a gracious and friendly as she was loud. Everyone merited a “hello how ya doin’ dawlin” from her. And she meant it.

She was a “presence” in New Orleans, and knew how to get things done. As much as she mixed with the powers that ran the city, she tended to favor the poor and disenfranchised, never forgetting her own background and upbringing. She was known to African-Americans as a tireless champion of civil rights – not the easiest of things to be in 1960s and 1970s New Orleans and in the circles she ran with.

Mrs. Easterling died last year. Instead of a wake or visitation, she threw herself a party in the lobby of the Saenger Orleans Theater. You’d have to see the lobby to appreciate it. The ticket office is on Canal Street, and you have to walk a good marbled half block through the long lobby to reach the theater itself. Entering Mrs. Easterling’s last party from Canal Street, you’d walk up that marbled hallway to the area in front of the theater doors, where guests and mourners found the guest of honor waiting.

 I am not making this up. You can read the newspaper reports.

She was a character in a city famous for its characters. And while I still can’t decide whether that either the wackiest thing I’ve ever heard of, or the one in poorest taste, or both, it was vintage Mickey Easterling.

It was also an act of defiance. She couldn’t stop death, but she didn’t have to surrender to it. And she wouldn’t.

Margaret Feinberg defied illness and pain, and fought back with joy. And a lot of parties. She wouldn’t surrender to breast cancer, no matter what happened. And what she was learning was that the outcome was less important than the fight. She didn’t know how it would end, but she was determined not to be defeated. And she wasn’t.

Led by Jason Stasyszen and Sarah Salter, we’ve been reading Fight Back with Joy. To see more posts on this chapter, “How to Throw the Best Party Ever,” please visit Sarah at Living Between the Lines.

Photograph by Kevin Casper via Public Domain Pictures. Used with permission. 

The First Step in the Journey to Joy

I’m reading chapter three of Fight Back With Joy: Celebrate More. Regret Less. Stare Down Your Greatest Fears by Margaret Feinberg, and one line stops me cold.

She’s describing the first treatment of chemotherapy to deal with her breast cancer. She discovers it’s not as bad as she expected (the “bad” comes later, she says). But still there are effects, and she applies some wisdom to her situation, deciding the pile of colorful laundry doesn’t have to be done immediately.

She considers the Apostle Paul, and his affliction. Whatever it was, it was serious enough for Paul to keep asking God to take it away. God doesn’t. And it’s okay. “For Paul,” Feinberg writes, accepting his circumstances is the secret to being content in them.”

And then the line that stops me cold.

“The journey to joy begins with acceptance.”

My mind goes immediately to my work, the work that has brought me little if any joy in the past four years. The “little if any joy” has played a role in my upcoming retirement.

And I think:

Acceptance.

Joy.

Acceptance.

Joy.

I arrive at work on Monday, and am almost immediately hit with not one but two joy killers. One is a chronic and recurring event; the other is one I’d call acute and one-time.

Last Friday, I would have narrowed my eyes, frowned, and said something choice, if true. My blood pressure would have risen. I would have felt my back start to act up.

On Monday, after reading Feinberg’s chapter the night before, I paused. I considered. I told myself I had been beating my head against the same wall for years, with nothing to show for it except aggravation, indigestion and stress on my back. It’s one of the reasons I’m retiring.

Acceptance. Joy. Acceptance. Joy.

I let both situations go.

I made some suggestions, but I let them go.

If the world comes to an end as a result, I thought, well then, the world will just have to come to an end. Somehow, I think the world will survive.

Did I immediately experience my physical being flooded with warmth and joy?

No, I can’t say that I did.

But what I did experience was a sense of calm. I’ll take calm.

Calm is good.

Led by Jason Stasyszen and Sarah Salter, we’re reading Fight Back with Joy. To see more posts on this chapter, “Three Simple Words to Set You Free,” please visit Jason at Connecting to Impact.

Photograph by George Hodan via Public Domain Pictures. Used with permission.

Who is Your Paraklete?

In Fight Back With Joy: Celebrate More. Regret Less. Stare Down Your Greatest Fears, Margaret Feinberg describes how she assembled the army she needed to fight breast cancer – the oncologist, the doctor, the friends and acquaintances – all of the people who joined with her, not just to fight breast cancer, but to fight back with joy.

Some were medical specialists; some were friends. Some did extraordinary things; some did normal things – and there were times when what she needed most were normal things. And this army became a source of paraklesis, the New Testament Greek for encouragement or comfort. It’s the word St. Paul uses to describe Philemon; it’s also the word Jesus uses to tell the apostles of the helper – the Holy Spirit – he is sending after he leaves them.

A paraklete doesn’t have to be someone who brings tongues of fire and the sound of a great, rushing wind; not does he (or she) have to be someone caught up in a friend’s serious illness. A paraklete can simply be a friend, someone to confide in, someone who refreshes your spirit as you refresh theirs, someone who is there to understand and commiserate, and sometimes celebrate.

Work, for example, can often be difficult. What helps make it bearable is having someone you can talk with. Like a paraklete. Someone to roll your eyes with at the next crazy announcement or organizational change. Someone who helps you understand what is happening. Someone you can listen to as they go through a hard time. It helps when it’s a colleague because they know the cast of characters, the culture, the environment, and the history of your particular workplace.

Let me be clear: I am not taking about mentors, although a mentor can also be a paraklete. I’m talking about colleagues who are friends.

When you go through regime change at work, everything becomes problematic.

I was once in a situation where regime change resulted in one, then a second, and then a third of my parakletes leave. One looked to be inevitable; another took the initiative and left for another job. The third was something of a surprise; it had been expected but not for some time to come. In this case, too, the individual left before being asked to leave.

My workplace became something of a desolate place. A place where I still had colleagues and people I liked, but not anyone in whom I felt comfortable in confiding. You discover you can be lonely in a large crowd of people you work with every day.

Those are the times you understand what a paraklete can mean. And not mean.

Margaret Feinberg found her parakeletes, and they made an enormous difference.

They always do.

Do you have a paraklete?

Led by Jason Stasysyzen and Sarah Salter, we’ve been discussing Fight Back with Joy. To see other posts on this chapter, “The Living Breathing Gift of Joy,” please visit Sarah at Living Between the Lines.

Photograph by Alok Rohit via Public Domain Pictures. Used with permission.

Fighting Breast Cancer – With Joy?

Minutes before she’s to give a presentation at the Mount Hermon Conference Center, Margaret Feinberg answers a phone call from a number she doesn’t recognize. It’s her doctor.

He tells her that both masses in her breast are positive. Carcinoma. Both of them. She needs to schedule surgery.

Her husband is there, and she goes to him. He knows without her saying a word. They’ve been waiting on this call. He holds her, and she asks one question.

“What if we fight back with joy?”

Joy?

Yes, joy.

She goes on to make her presentation, or as she writes in Fight Back With Joy: Celebrate More. Regret Less. Stare Down Your Greatest Fears, “I delivered my talk that morning. Barely.”

Feinberg is clear. This isn’t a joyful experience. The emotional fears and scars start immediately. The fear is there. “I was now a member of the guild no one wants to join. I discovered that once you’re in, everyone lends a hand. “Our shared experiences, desire to fight back, and will to survive bind us together.”

She points the fight, this fight in life, beyond her immediate breast cancer. All of us share a fight, because all of us are human, broken, fearful, scarred, battling our own fights that are awful if not as scary as what a person with cancer faces.

This is all part of life. And we can surrender, or we can fight. With joy.

“From the day of the diagnosis,” she says, “I felt compelled to choose a different type of weapon: joy…Joy would not deny the hardship, but would choose to acknowledge and face it no matter what the outcome.”

This isn’t about a feeling. Feinberg defines joy much more broadly than that, to encompass all of the positive, beneficial, good things in our lives. It is a practice, and I suspect Feinberg didn’t just practice it daily but also hourly and, often, minute by minute.

The darkness – defined by cancer, other diseases, addictions, depression, financial setbacks, job losses – that darkness will not win.

What happens is that the outcome becomes less important than the path to the outcome.

Life is hard, and often “always hard” rather than “often hard.” But that hardness is also not the outcome or the point.

“Joy is your heritage, purpose and destiny,” she writes.

And the focus becomes how to practice joy daily, no matter what the circumstances.

It’s difficult to read this chapter of Fight Back With Joy without tears. But tears, too, are part of the joy.

Led by Jason Stasyszen and Sarah Salter, we’re reading Margaret Feingberg’s Fight Back with Joy. To see other posts on this chapter, “A Choice That Changed Everything,” please visit Jason at Connecting to Impact.

Photograph by George Hodan via Public Domain Pictures. Used with permission.

The Poetry of Illness

This post was originally published at The Master’s Artist. I’m periodically reposting some of the articles here.

Can poetry speak to illness? Can poetry speak to something as personal, terrifying and life-changing as breast cancer? Poet Anya Krugovoy Silver says yes.

Silver is an associate professor of English at Mercer University in Macon, Georgia. Her poetry has been published in such journals as Image, New Ohio Review, Witness, Prairie Schooner, Christian Century, Christianity and Literature and Anglican Theological Review. And it’s also been published in a collection entitled The Ninety-Third Name of God: Poems.

The heart of this volume is a series of extraordinary poems about breast cancer, from biopsy and diagnosis through mastectomy and recovery. These poems are about shock and fear, heartbreak and hope, and all the clinical trials and details in between. Like the illness they describe, these poems find their own discoveries, their own processes and flows, as the mind and the heart tries to make sense of what is happening.

After the biopsy and confirmation of diagnosis, Silver begins with a blessing that is simultaneously a kind of mourning.

Blessing for My Left Breast

Your skin slit round with a scalpel:

be brave.

Rise to the aluminum tray, the biopsy needle.

Go, nipple, go, milk ducts, go, veins.

Take with you my lymph nodes,

canaries of illness, blood cells’ puff balls.

Blessed be my chest wall for surrendering.

Now you will never shrink and wrinkle with age,

clove-studded orange, bittersweet.

Taken in your beauty, let the last hands

that hold you

be gentle.

She survives the surgery, but now comes the follow-up – the procedures like radiation and chemotherapy which sound so “medical” and yet are personal, invasive and themselves destructive. Yet even here she finds a dignity and even an unexpected intimacy, a pouring of grace upon the terrible.

 

Everything is Perfect

If my cancer recurs,

if I vomit from chemo,

help me follow the one who knew

she was dying, who turned

to the man wiping clean her face

and said, Everything is perfect.

Scrape me like a nutmeg, Lord.

Release my fragrance.

And then later, post-recovery, a kind of normalcy resumes, but it is only a kind of normalcy, because what was cannot be recovered; only what is can be grasped, and only what will be can be hoped for.

Ash Wednesday

How comforting, the smudge one ach forehead:

I’m not to be singled out after all.

From dust you came. To dust you will return.

my mastectomy, a memento mori,

prosthesis smooth as a polished skull.

I like the solidity of this prayer,

the ointment thumbed into my forehead,

my knees pressing hard on the velvet rail.

If God won’t give me His body to clutch,

I’ll grind this soot in my skin instead.

If I can’t hold the flame that burned my breast,

I’ll char my brow; I’ll blacken my pores; I’ll flaunt

with ash this flaw in His creation.

She finds comfort in the familiar Ash Wednesday ritual of the forehead smudge, simply because it is familiar and she’s alive to recognize the familiar. And while the last five lines of this poem seem almost jarring, like a fist being shook in God’s face, they are also a declaration of survival, in spite of the “flaw in His creation.”

These poems are a journey from despair to hope. Poetry does speak to illness, in profound and yet very human ways.