I Cannot Do This Alone


Part II in a series — read the first part of Michelle’s story "Epiphany" in the August 2008 The Ones We Love column.

The doctor pushed the curtain aside
and left to document the conversation in the file, leaving Shon and I to absorb
the jagged pill he had just forced us to swallow. “There’s something on the left side of your
brain.” How were we supposed to respond
to that? No questions came to mind. There were no particular concerns I could
voice. I really did not even have any
feelings at all, save utter shock. In that moment of revelation I could only
stare at my husband and try to imagine the big dark mass lurking underneath his
thick brown hair and perfectly smooth scalp. It had to be a joke.

As I gradually regained my senses, all I could think of was
the Epiphany service I was supposed to be leading in a couple of hours. Not long before it had seemed vitally important
for me to be there early to set up. Now
my mind was trying to figure out how to cancel the whole thing. I picked up the emergency room wall phone and
shared the devastating news with Shon’s parents and then mine. One more time, I picked up the phone and
called our volunteer choir director, Mickie, and told her the news. Mickie’s response was to walk straight over
to the ER—she lives across the street from the hospital—and give us both hugs
and assurances. She asked where my notes
for the Epiphany service were. I told
her. “Don’t worry about a thing, we’ll
be fine.” And they were fine, the
service went on, not as planned, but as needed, with lots of prayer.

Early on I
learned that in order for me to keep my sanity, my job, and my family I had to
communicate constantly with all parties. This was before we had a cell phone, so my fingers quickly callused from dialing the ga-zillion numbers required to make a call with a calling card
through the hospital network. I kept our
Clerk of Session and the Worship Committee Chair up-to-date, and notified the Executive
Presbyter. They lined up pulpit supply
for the two Sundays following Shon’s surgery.

During the
first two years after Shon’s diagnosis, there were relatively few interruptions
to my work schedule. He had no follow-up
treatments, only MRIs every few months. The biggest lifestyle change involved the seizures. Shon was having about 16 seizures a month
that affected every muscle on the right side of his body. It took us a year and two doctors to finally
reduce the severity and the number to around 3 per month. The seizures wore him out and often made him
fall. They also made it impossible for
him to drive. The Session and
congregation allowed me to be flexible with my office schedule so I could take
him to appointments, do much of my work from home and be with him on the days
when he was especially weak.

The Session supported and
encouraged my weekly meetings with a local Clergy Support Group as part of my
Continuing Education allowance. All of the other pastors in this small group
had several more years of ministry experience than I. I found it immensely helpful not only to vent
frustrations and sorrows in their empathizing presence, but also to try out
ideas and seek the advice of their collective wisdom. At this same time, I began seeing a counselor
who helped and still helps me explore the deeper psychological and spiritual
consequences of my experiences.

I look back
on this time before the recurrence and think how easy things were then. Certainly they were not easy. But everything is relative; when the tumor
came back in 2005, it was bigger, more aggressive, and we had a toddler. Life got exponentially more complicated!

Upon
receiving the results of the imaging and pathology, Shon and I immediately sat
down with the Session to talk about what the doctors were telling us to expect
and how we might navigate the process together. My friend and mentor from a church down the road, who also happened to
be on the Presbytery’s Committee on Ministry, asked if she could help in any
way. As my mind was clouded over by lack
of sleep and constant worries, we invited her to moderate the meeting for me.

We began by
sharing everything we knew about what Shon would be going through in the next
year, as well as the doctors could predict. He would be undergoing a new and complex form of “awake” surgery that
would allow the surgeons to go much deeper into the brain than before. The risks were too many and too great to
fathom, but if all went well, he would begin a combination of radiation and
chemotherapy in about two months, after his body had healed sufficiently from
the surgery. After that would be another
form of chemotherapy, the horrors of which we were yet to find out.

It was
obvious to everyone that I would not be able to give both my husband and the
church my full attention. Everyone
agreed that my husband and daughter needed me more in that moment than did the
church. We were blessed at that time
with an elder who had years of experience in Human Resources. While the denomination had no precedent or
policy, he helped the Session construct a paid Family Leave Time
agreement. That night, they approved 12
weeks of leave at full pay, to be re-visited at the end of the term when we
would know Shon’s post-operative condition and details of his upcoming
treatment regimen. Shortly after this,
our Presbytery approved a Family Leave policy for congregations to use as a
guide in times of crisis.

The Committee on Ministry also
began to work with the congregation’s Worship Committee to fill the pulpit. Other pastors nearby offered to help with
hospital calls. Much of the pulpit
supply and visitation needs were taken up by the congregation’s own Parish
Associate, a dedicated retired pastor who had been with the congregation for
some time.

Two of the biggest differences for
me between the first surgery and the second surgery were (1) I got a cell phone
and (2) I discovered Carepages.com. An
elder, who is also a pediatric intensive care nurse, referred us to this
website that many of her patients’ families use. This tip was definitely sent from God, and
saved my poor little fingers from dialing up more calluses. It allowed me to easily set up a blog spot
from which everyone could be updated on Shon’s condition at the same time, with
pictures of Nellie to boot! This meant that family, friends, and church members
were all getting the same information from me, without having to call fifty
people.

Improved communication was highly
beneficial because the summer after the surgery was especially hard. It was supposed to be time for Shon to rest
up and regain his strength before radiation. And then Shon went and contracted two different staph infections for
which he was in and out of the hospital several times. When he was at the hospital, I lived between
hospital and home. When he was at home, I played nurse, giving him antibiotics
via an intravenous line. If I learned
anything that summer, it was that I was surely not cut out to be a nurse!

While I was torturing my husband
with needles and syringes, the Deacons helped by lining up babysitters when
Shon’s family was not available to watch our daughter, Nellie. They also lined up meals that kept our fridge
full for weeks and weeks. They also kept
the prayer chain active and made sure we knew we were being lifted in prayer
with frequent cards and emails.

One of our elders was also a
trained lay pastor in the Presbytery. She had served in the pulpit, with visiting and other duties 20 hours a
week during the 8 weeks I was on maternity leave in March-April 2005. We called on her expertise once again, this
time as a Commissioned Lay Pastor, to fill in when needed and provide
continuity going into the fall and spring. As horrible as the summer had been, we were told to expect things to get
worse.

For the next twelve months, my
schedule would be determined by the whims of Shon’s body. For the most part, I was able to work full
time, and did not miss too many Sundays in the pulpit. But there were many days when I had to drop
everything and take Shon into St. Louis to see the doctor or stay up all night with a
cranky baby and a husband who could not stop throwing up. Radiation left Shon with large, raw bald
spots on his head. Forty-two weeks of
chemotherapy finished the job, leaving him completely bald and half the man he
was when he started, literally.

Today, Shon continues to recover
from the chemotherapy that ended over two years ago. His once thick, brown hair is now thin and
black with bald patches. His hands shake
and his right foot drags. Still, most
folks would never guess by looking at him that he has brain cancer. Through it all he has taken care of two
little girls, finished a basement, led a youth group, started an archery
program and more. When I think about how
I have made it through the past six
years, I know the biggest factor has been the amazing strength and solid faith
of my husband.

From the beginning, I have tried to
be open and honest with the Session as well as the congregation about what was
going on with Shon’s health and my abilities (or lack thereof) to be an
effective leader. They were willing to
work with me through the confusion and the crisis, allowing me to work when I
was able and be at home when I was needed. While I never donned sackcloth and ashes, neither have I held back my
real emotions, often using them as a vehicle to explore the biblical
narrative. There is a time and a place
for everything, however, and I have attempted to keep the raw weeping and
gnashing of teeth for home or the counselor’s office.

Navigating
a course in my time of personal and pastoral crisis has been an intuitive,
communal process. God has reminded me
again and again that I am not alone and I cannot do this alone. My sisters, I guarantee chaos will find you
if it hasn’t already. When it does, it will
turn your life and your planning calendar upside down. I pray that you are strong in spirit and in
faith. I pray that you are surrounded by
a loving family and network of friends. I pray that you are secure within an understanding and compassionate
congregation. I pray that you have the
courage to receive help and prayers, as I am sure you are quick to offer
yours. I pray for your health and
well-being. Peace!


2 replies
  1. Katie
    Katie says:

    Thank you Michelle, more than words can say, for telling your story and sharing your words of advice! What a powerful witness to God’s grace.

    Reply
  2. Rev Jennifer
    Rev Jennifer says:

    Michelle, all I can say is, thank you–for the courage to live this story and to tell it. For the strength you found in hellish chaos. For allowing yourself to be human and experience all the complex emotions of this time. For giving us the courage to do the same. Thank you!

    Reply

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