A Circus of Brass and Bone

by Abra SW

  Because they were working in India, they didn’t have health insurance. My mother’s first plan was to get treated in India, where the costs are lower, but when the first attempted surgery didn’t go well, the decision was made to come home to America for surgery and treatment. This meant leaving behind both of their jobs.

  Because my parents spent much of their adult life helping others—working with farmers in Africa, teaching in India—they didn’t have much in the way of savings that could help with the costs.

  No health insurance.

  No jobs.

  No savings cushion.

  Desperate need of treatment for a serious diagnosis.

  Eventually, my mother was able to get medical insurance despite having a preexisting condition, but the cost of her care was still quite high. Writing and sharing The Circus of Brass and Bone helped to raise funds to contribute toward her expenses, and it also allowed news of her situation to reach friends (old and new) who were able to help.

  She survived about 15 months after being diagnosed with ovarian and endometrial cancer. I don’t say she struggled or battled or fought, because she didn’t like using violent imagery to describe it. She endured it with remarkable grace, and it seemed to leave her outwardly untouched for a very long time, even as it spread through her body. Up until the very end, she would run—and then walk—along the Sand Creek bike path, taking photographs that were displayed in a gallery exhibit after her death.

  In the last year of her life, she was able to do much. She saw her photographs from India exhibited in an art gallery. She held her first grandchild. She rejoiced in hearing from many of the people whose lives she had touched over the years. She told me how much it mattered to her that she got so much support from friends, family, and even total strangers who knew of her only from news articles or from The Circus of Brass and Bone. During the darkest days of her treatment, my mother found inspiration and comfort in the kindness of strangers.

  One of the last things she did was to celebrate her 33 1/3 wedding anniversary. People came from all over the world to see her, to honor her life, and to say goodbye.

  She died because breathing became just too difficult. When my aunt, a nurse, told my mother that she thought my mother would probably die that night, my mother’s response was to give her two thumbs up. She was ready to go. And when she stopped breathing, she smiled before she died.

  Her last coherent words were to my dad: “I love you.”

  She lived a rewarding and adventurous life, though we all wish she could have stayed with us longer. Mom, this one is for you.

  “You might not have to die …”

  An Essay by Cookie Wiebe

  When hiking in the Himalayas in the 90′s, I categorized the drop-offs at the edge of the trail according to the probable end result:

  They might not have to carry you (i.e., you might not even get injured).

  You might not have to die (your injuries might not be fatal)

  They might not find you (self-explanatory)

  This summer vacation I’ve been thinking somebody’s definitely going to have to carry me and I might, in fact, have to die. I’ve not been well for several months and have been chasing doctors and lab tests trying to figure out what the problem is. Most of my symptoms are consistent with ovarian cancer. However, most symptoms of ovarian cancer are not specific to that and can occur for other reasons—which is why it is often not diagnosed until stage three or four, when it has already spread. Suffice it to say I’ve been “uncomfortable” in the entire abdominal (did I almost say “abominable”?) region. While tests are ongoing (some of which are inconclusive/non-diagnostic) and while an ovarian cyst has been detected, we are waiting for an endometrial biopsy report to be followed by removal of an ovary, lab tests, etc.

  ‘Nuff said about the medical side. What I wanted to say, is that I’ve been thinking about dying. Scary things will do that to you. It is heartening to discover that my philosophy about end-of-life and bad things happening to good people (assuming that includes me :-), are already fairly well thought out and intact, due to previous “bad things” happening. Here are the main conclusions I have arrived at since age 27 when the first really bad thing happened.

  1. God will not allow anything to happen to me that will not further his kingdom.

  That’s the only ““guarantee” I can count on and it is predicated on my being willing to be used for the good of the Kingdom of God. Knowing God loves me, cares for me, and is actively involved in my life is no guarantee of a happy life, a healthy life or life at all. I arrived at this conclusion following two critical incidents. The first was the premature birth and death of our second child, Bethany Ann, as a result of multiple, congenital birth defects. She died on her due date after spending her entire short life in a neonatal intensive care unit in another state. After Bethany died, I became somewhat obsessive compulsive about safety: checking the pilot light on the gas cook stove multiple times (including during the night), checking if the doors were locked, etc. I prayed every night for safety, imagining the house burning down and other disasters happening, but had a hard time believing that God would intervene, thus the need to look after ourselves. I remember thinking about other tragedies that God had not averted. There was a toddler who slipped down a well and could not be rescued in France, there were dissidents murdered in Guatemala. Surely, there were Christians suffering as well as non-Christians. How could I hold on to a theology that presumed special protection for some, yet, if I followed that line of thought to its inevitable conclusion, implied a judgment even on the most unfortunate of God’s faithful? I had to let go of the “promise” of protection and hope it’s loss did not mean a greater loss of faith.

  This pattern of fear-based prayer continued in spite of a relatively strong Christian faith otherwise. In 1989, we went as Mennonite Central Committee (MCC) volunteers to Chad, Africa for a three-year term as agricultural and community development workers. While I hope to put my entire journal online eventually, the most exciting part is when we were robbed by deserting soldiers during the coup d’etat that brought current president Idriss Debi to power. Overlooked by the French embassy in their evacuations and unable to drive out due to the number of deserting soldiers on the road, we were sitting ducks. It was only a matter of time before a jeep pulled up and five guys with four machine guns got out. Dave and I looked at each other and said, “We’re going to be robbed”. It is our most exciting story from Chad, but I won’t tell it all here, other than to say that we emerged unscathed, though significantly poorer. We were each (Dave, myself, and 10-yr. old Abra) taken into the house one by one, and at the end—one of the deserters wanted to take me with them. Through the entire time, we believe that God guided our actions and our words in such a way that it set the tone for what was essentially a very polite robbery without injury to anyone and which, in the end, made the leader tell the other guys to “leave her”.

  This event, together with Bethany’s death, led me to the conclusion that God’s protection is for God’s purposes alone. It is not a promise of a long, happy, or healthy life—or—life at all.

  2. It’s okay to die.

  Between 2006 and 2008, both of my parents died. My father died of Alzheimer’s and my mother most probably from congestive heart failure and other issues. My father went into his “long good-bye” as gracefully and gently as I had known him to be throughout his life: With humor, with humility, and with a sense of overall peacefulness that I think, came from a life well-lived and a heart that assumed the best of everyone and forgave, to the best of his ability, those who had hurt him. My mother had grown up in a much less emotionally healthy environment and had gone through life always fearful that she would anger someone (like her doctor—by asking questions) and get less good care. She spent her life focused on providing for the future, acquiring a huge collection of fabric and art supplies for that day when she would be finally “organized” enough to have time to do all of the artistic things she
wanted to do. (Her biggest donation to charity was probably the pickup load of fabric and the boxes of art supplies given to The Et Cetera Shop, the MCC thrift store, after her death). My father died peacefully in his sleep. My mother died after two days of physical reactions that made her struggle to sit up in bed, often with a grimace on her face. In spite of her Christian faith and expressed readiness to die (when she was still able to talk about it), the end of life was a difficult path to walk with her. Watching their ability to care for themselves and, ultimately, to interact with others, desert them over the last year or so, the end did not seem such a loss. It seemed appropriate and the time had come to say “good-bye”. With the help of hospice and the care of the nursing home staff, their last days were as painless and comfortable as possible. They both died in their own room, in their own bed, surrounded by all of their children.

  The last thing I would want to do is linger on in some half-life, unable to act and interact with Dave and Abra, family, and friends. Death is not such a fearful thing that I must avoid it by clinging to a life that is difficult for me and for those who love and care for me. I do not want years of anyone’s life to be focused on prolonging mine! I want my family to LIVE, rather than to have their lives constrained by stringing out my dying. It’s okay to die.

  3. A long life and a full life are not necessarily the same thing.

  If, indeed, I do have some dread disease that will shorten my life, boy, am I ever glad we didn’t just sit in Newton, KS! We did, as one friend suggested, “what the rest of us wish we could do” in going to Africa as volunteers and now twice to Woodstock School in India. We didn’t do these things after getting all of our affairs in order (retirement provided for, daughter’s college saved for, etc.) We did them in spite of some rather dramatic financial effects—if you consider lost income/savings. So many people, it seems, think they can wait until some perfect time (like retirement) before spending years as a volunteer in another part of the world. Tell me, what guarantee do they have that when they retire, they will a.) think they can finally “afford” to be a volunteer, b.) have the desire to go through culture shock and acclimate to different country/culture, and c.) have the good health and good marriage (if married) that will allow them to do so? Given the obesity rate in America and the increase in lifestyle-related health concerns, who can count on being healthy enough to do anything more exciting than walk the dog and click the remote by the time they retire?

  I may not have a long life, but I’ve had a wonderfully full one. And yes, some of that fullness has been extremely difficult and painful. Yet, I wouldn’t trade even those experiences (and the growth gained) to be younger again. I’ve a wonderful husband for over 32 years; we’ve walked together through raising Abra, losing Bethany, hosting Sophia, two extremely difficult job situations which devastated my sense of calling/mission for years, and all of those adventures in Chad and India: scorpions and a baby cobra in the living room, observing the entire fast of Ramadan one year, driving “lost” for hours following a trail of bent grass, telling students “you’re not going to die, but you’re going to get really, really cold” when lost at sundown while hiking in the Himalayas, being advisers to a group of 14 students from 7 countries, making friends across cultures and religions. Not to mention all the animals we’ve had: dogs & cats (of course), a calf (in town), chickens, ducks, rabbits, owls, goats, donkey and even a baby monkey.

  I have not waited for some other time to do and go and experience. And now, I’m really, really glad! As Bill Hybel says in his book, Holy Discontent, “In what other life are you going to go all out?” Amen.

  4. My life isn’t any shorter today than it was yesterday (before possible dread disease)

  If I believe my life is in God’s hands (and believe me, every time I’ve ridden in a taxi or bus down the mountain from Mussoorie to Dehradun, I KNOW it’s not in my hands!), then my life—in total—hasn’t changed. My life expectancy isn’t any different today than it was a year ago. I may know more, in a few days, of what to expect and when, but I’m not sure the actual timing for Cookie, in God’s eternal plan, has changed at all. It’s the same as my philosophy about the “end of the world”: It shouldn’t change the way I live my life. I should always be living in the light of an eternal awareness, willing to be used by God, not just when the end is in sight.

  5. My goal is to empower my loved ones to move on.

  Good relationships are a lot easier to grieve, and then to be able to move forward. I want my husband, my family, and friends, to be able to grieve (yes, I hope they mourn me!), but then to walk forward without anger or hurt or guilt that keeps them from enjoying life and allowing other relationships to fulfill the needs that I filled. So, if life is shorter than I knew, I will focus on what I need to do to help those who will miss me—but who have a life left to live!

  6. To-do list:

  I ALWAYS have a list of things to do. …If life is shorter than expected (or maybe, even if not), I’d like to:

  Put a lot more on my website www.charitableliving.net that reflects the things I’ve thought about, as well as my journal from Chad, speeches, etc.

  Write a lot more letters/respond to emails and be a lot better about keeping in touch. Maybe even make some phone calls.

  Have an exhibition of photos, primarily portraits. It would be great to do it at a Final Friday gallery in Wichita since we went regularly for so many years.

  Go home in time to have the house arranged like it will stay for the next five years after I’m gone. Dave does not like change, and if the house is not “homey” when I go, it won’t be for a very long time after!

  For several years, Dave and I were part of a team of four couples who shared deeply about their marriages with participating couples during Marriage Encounter weekends. The older couple on our team shared on the very difficult topic of death, thinking of their own death and its effect on their spouse. Oliver and Elizabeth’s talk brought tears to many an eye and modeled a way to share, even about the prospect of dying, with one’s spouse. While we shared other difficult topics, we did not present that one. While it’s a topic no one wants to think might actually happen (me included), no matter what the diagnosis is, the process of thinking “what if I’m going to die?” has been good.

  Peace,

  Cookie

  What do you think about your own death?

  “You might not have to die …”

  Discussion Questions

  In July 2010, while waiting for test results, I wrote the following essay. In October 2010, I added discussion questions for each point for use in our Sunday School class. Below are the shortened points and some questions.

  When hiking in the Himalayas in the 90’s, I categorized the drop-offs at the edge of the trail according to the probable end result:

  They might not have to carry you (i.e., you might not even get injured).

  You might not have to die (your injuries might not be fatal)

  They might not find you (self-explanatory)

  This summer vacation I’ve been thinking somebody’s definitely going to have to carry me and I might, in fact, have to die.

  It is heartening to discover that my philosophy about end-of-life and bad things happening to good people, assuming that includes me :-), are already fairly well thought out and intact, due to previous “bad things” happening. Here are the main conclusions I have arrived at since age 27 when the first really bad thing happened.

  1. God will not allow anything to happen to me that will not further his kingdom.

  That’s the only “guarantee” I can count on and it is predicated on my being willing to be used for the good of the Kingdom of God. Knowing God loves me, cares for me, and is actively involved in my life is no guarantee of a happy life, a healthy life or life at all.

  What in your life confirms/questions this conclusion?

  What conclusions have you come to?

  2. It’s okay to die.

  Between 2006 and 2008, both of my
parents died. My father died of Alzheimer’s and my mother most probably from congestive heart failure and other issues.

  Watching their ability to care for themselves and, ultimately, to interact with others, desert them over the last year or so, the end did not seem such a loss. It seemed appropriate and the time had come to say “good-bye.”

  The last thing I would want to do is linger on in some half-life, unable to act and interact with Dave and Abra, family, and friends. Death is not such a fearful thing that I must avoid it by clinging to a life that is difficult for me and for those who love and care for me. I do not want years of anyone’s life to be focused on prolonging mine! I want my family to LIVE, rather than to have their lives constrained by stringing out my dying. It’s okay to die.

  Whom have you watched die?

  What makes it an “okay” time to die?

  What is a “good” death?

  3. A long life and a full life are not necessarily the same thing.

  I may not have a long life, but I’ve had a wonderfully full one. And yes, some of that fullness has been extremely difficult and painful. Yet, I wouldn’t trade even those experiences (and the growth gained) to be younger again.

  I have not waited for some other time to do and go and experience. And now, I’m really, really glad! As Bill Hybel says in his book, Holy Discontent, “In what other life are you going to go all out?” Amen.

  What’s on your “bucket list”?

  4. My life isn’t any shorter today than it was yesterday (before possible dread disease)

  If I believe my life is in God’s hands, then my life—in total—hasn’t changed. My life expectancy isn’t any different today than it was a year ago. I may know more, in a few days, of what to expect and when, but I’m not sure the actual timing for Cookie, in God’s eternal plan, has changed at all. I should always be living in the light of an eternal awareness, willing to be used by God, not just when the end is in sight.