|
Hope and Transformation-The Means
to Recovery
By Kathleen Campbell, M. Div.
Service to others has been the focus
of my life and work. I was reared in a parsonage where Jesus'
command to love our neighbor was part of daily life. Living
next door to the church, I remember a transient at our door
who needed money for gas and groceries. My parents provided
what he needed. Such formative experiences led me to follow
my father's profession into the ordained ministry.
I took a leave from parish ministry
eight years ago, but continued to be active in my congregation
and also volunteered at my children's school. My current work
at the University of Puget Sound in Tacoma, Washington, is
grounded in a desire to help students obtain an education
that will help them contribute something of value to the world.
When I was diagnosed in February 2002 with Complex Regional
Pain Syndrome the ability to serve others unraveled quickly.
The demands of therapy meant re-ordering my life, discarding
many activities to cope with the essentials of life: managing
my 40-hour-work week and parenting two elementary-age children.
I was 42 and in the middle of divorce proceedings. The children
lived with me nine of every 14 days.
I write this essay after 16 months
of treatment in order to provide support and hope to others
who experience the challenges of RSD/CRPS. I hope that the
particulars of my story might connect with something familiar
in your suffering and healing, or your practice of therapy
and medicine. Perhaps anything unique may offer new hope,
courage, or wisdom in dealing with RSD/CRPS.
The Onset and Diagnosis of CRPS
My podiatrist diagnosed Reflex Sympathetic Dystrophy in February
2002 but it was four months earlier in October 2001 when a
throbbing pain in my right foot woke me from my usual deep
sleep. The next day the pain was unbearable and the only shoes
I could wear to work were a well-worn pair of running shoes,
with the laces as loose as possible without the shoe falling
off. I began limping, couldn't sleep well, and found driving
difficult because of the pressure required to use the brake
and gas pedals. I thought I must have somehow broken a toe
and the pain would just go away in time. Instead the pain
increased, and so after four weeks I saw a podiatrist who
determined I had "Morton's neuroma", a swollen nerve
between the third and fourth metatarsal bone. I received two
shots of cortisone near the site of the neuroma over the next
three weeks. The pain persisted. Dr. B. then suggested orthotics,
which made no sense since I could barely tolerate the shoe
on my foot. I couldn't imagine jamming anything else into
my shoe and making it even tighter. My other option was surgery.
Cut out the nerve, and he promised that with each day I'd
be getting better rather than dealing with this downward spiral
of pain.
I was not convinced, and so found a
Chinese healer instead, one highly recommended by a friend.
A session of acupressure brought welcome relief. Somehow,
she was able to touch the foot without stimulating more pain.
But regrettably, it was only for the hour I was with her.
By mid-December I could not wear any of my shoes, and was
hobbling in a pair of newly purchased Birkenstock clogs that
had a gel pad built in for "added comfort". I did
Christmas shopping with catalogs, and pared down grocery shopping
to a 10-minute sweep for what was on my pre-planned list.
I learned to drive with my left foot after an unexpected nerve
spasm shot up through my right leg causing the car to jolt
to a stop in an intersection. Weary from the pain and lack
of sleep, I opted for surgery in January.
Two weeks post-surgery, Dr. B. reported
the surgery a success. He removed a nerve that was looped
up like a snake forcing it to pop out when he made the incision.
Never in 20 years of practice had he seen a nerve under so
much pressure. At the next post-surgical visit, there was
a marked reversal in his prognosis. He lightly touched the
surgical site and I immediately pulled back. His eyes widened
with concern and what seemed to express a personal sense of
failure. His only words were, "We've got to get this
under control or there could be serious long-term problems."
With that, he hurried from the exam room, leaving me alone
and bewildered. What happened to the glowing success from
two weeks earlier? He returned a few moments later with a
syringe and began injecting my foot without explanation, leaving
me more confused. Three syringes later, he finally explained
what he was doing: trying to warm up the foot with anesthetic
in order to produce a vascular flush. The foot had swollen
out of proportion to normal, there was a dramatic decrease
in temperature and there was an aura of pain so great that
his nurse was particularly hesitant in changing the bandages
from the surgical site. He told me I had Reflex Sympathetic
Dystrophy, which I later learned is now known as Complex Regional
Pain Syndrome (RSD/CRPS)
Those suffering with RSD/CRPS develop
a pattern of protecting or guarding the limb because of the
severe pain. I was using a walker at home at the time of the
diagnosis and relied on a motorized grocery cart to shop.
I managed to limp about work without the walker, as I was
embarrassed to use a symbol of disability in public. Some
patients cannot recover use of the affected limb because of
the chronic pain and resultant disuse. I experienced all classic
symptoms of RSD/CRPS except the trophic changes to skin and
nails.
With the RSD diagnosis Dr. B. sent me home with instructions
to keep the foot warm. He gave me a prescription of Dibenzyline®
to warm the foot, I took a hot bath each night and wrapped
my foot in a hot sock and blanket while at my desk at work.
A week later I returned to see him and he still had no good
news. The nerves weren't responding to this heat therapy.
My foot was hypersensitive to any touch, and my ankle had
swollen to the size of my knee. I had taken the day off work
because it was my children's mid-winter school holiday, and
planned to take them from the podiatrist to their dental appointments
and then a movie. Dr. B. changed those plans. He and his staff
made calls to a nearby physical therapy clinic and to my primary
care physician and insurance provider. "You need to get
into therapy today. Reschedule the dental appointments."
This was medical urgency I'd never experienced. So, with one
more syringe of anesthetic, enough to relax my foot so the
therapist would be able to touch it, he sent me to a clinic
down the street.
The owner was on vacation, and so I got the substitute therapist
in charge. She matched my podiatrist's alarm over the condition
of my foot. I sat on a molded plastic chair across from her
as my leg and foot rested on her arm, now easy to hold with
the anesthetic at work. She showed how to get my foot moving
again: pump my ankle, draw the alphabet with my toes, circle
my ankle to the left, and round to the right, press my foot
against an inflated beach ball, and out in the hall, I practiced
rolling on my toes as I walked. She watched as I tried to
imitate her instructions: pump, circle, draw, press, and roll
through the toes. Good. Sitting back in the chair with my
leg in her arm again, she then measured the swelling of my
foot. Putting down the measuring tape, she leaned closer while
still holding my leg in her arms, and with the clarity of
a boot-camp sergeant she said:
"You need to do these exercises every hour, on the hour,
and set a timer if you have to. Three times a day you need
to elevate your foot, way up high, above your heart, for twenty
minutes or more at a time, then massage the foot, especially
the toes that hurt and the surgical site. Your priority is
not your kids, not your work, not anything else. Your priority
is these exercises, or you'll lose the use of your foot. Can
you do it?"
Tears streaming down my face, knowing
that my 8-year-old daughter and 10-year-old son were awaiting
my return home and counting on me to take them to the movies,
I nodded "Yes." I had little to say to this therapist.
I felt like my life was just blasted to bits.
I drove back to my apartment in tears.
My kids were home alone and waiting to go to the movie. I
needed to regroup and figure out how I could go on with my
life and also deal with the relentless pain and expectations
for therapy. We went to the movie anyway, and I began adapting
to my new life. We took a seat in the second row and I propped
my foot up and over the empty seat in front of me. I took
along the therapist's beach ball and alternated between elevating
my foot and pushing my foot on the ball under the seat. Thus
began 16 months of physical therapy.
The exercises were just one component
of how I moved beyond the RSD/CRPS pain and disability. Quota-based
physical therapy was likely most important, but other strategies
allowed me both to heal and to deal with the challenges of
therapy. These included elevation, meditation, massage, hot
baths and heat wraps, humor, music, psychological support,
medications, journaling, spiritual direction and intersection
of prayer with exercises. Over the course of treatment, I
put in nearly 800 hours of working on this, some at medical
appointments but mostly at home, the gym and the office.
Quota-Based Physical Therapy Exercises
Dr. Roger Allen who teaches in the Doctor of Physical Therapy
program at the University of Puget Sound introduced me to
quota-based physical therapy. This method began by seeing
how much of an exercise I could do, and then I did the same
exercise the next day at home with just 80 percent of the
number done at my appointment. I then added more repetitions
or time to the exercise each day. As one exercise accomplished
its purpose in helping my toes, metatarsals, and ankle move
more normally, other exercises were introduced one at a time
to help me move slowly and steadily toward more challenging
activities. They were introduced slowly because of the pain,
but became increasingly harder to help me reach my functional
goals.
Therapy for RSD/CRPS also meant moving into the pain in order
to feel less pain over time. Most every exercise hurt before
it helped. Paper shoving and rolling on balls were two such
excruciating exercises. Moving into the pain was counter-intuitive.
With acute pain, wisdom says to stop and rest. With the chronic
pain of RSD/CRPS, movement is essential, even if it hurts.
The best image I discovered to explain this was from a sermon
preached by Rev. Emanuel Cleaver, pastor at St. James United
Methodist Church and mayor of Kansas City.
When a storm comes up in the cold of winter, and the wind
comes from behind the sheep and blows the icy rain under their
wool, they will freeze to death. As the storm comes, the sheep
must turn to face into the storm. I do not suppose they choose
to do that. Sheep are not very bright and must be carefully
guided by the sheepdogs and shepherd. The shepherd and dogs
turn the sheep to face into the storm so that they will survive.
So it was with Roger in physical therapy.
He showed me how to move into the storm, and stayed with me
during months of treatment. Eventually I found the pain would
pass after a few days of trying some new and more challenging
exercise, with the results being that I was able to accomplish
all the goals on my list.
Setting Goals
Within the first two weeks of starting therapy I wrote a list
of goals. I wrote everything I could think of - both the mundane
activities of daily living and the seemingly impossible hopes
at this peak point of pain and disability. As the weeks and
months went on, I added to my original list as I thought of
things I wanted to accomplish. As I achieved one of the goals,
I checked it off and felt a rush of satisfaction. This sense
of joy in the midst of the pain and suffering helped me move
forward to other goals. When I could do the harder activities
on my list such as walking to work, riding my bike, dancing
in church, and kicking the soccer ball in the backyard with
Hannah, I celebrated with something nice - breakfast out,
a new pair of earrings, a good book.
Texts and Tales of Transformation
and Hope
Having earned a master's degree and working at a college,
I live in a world of books and naturally seek out new knowledge.
The reading I found helpful included books on the mind-body
connection and inspirational stories of those who had conquered
a challenging illness or grief in their lives.
From a sermon preached by pastor Jon
Short at my church, I learned that transformation of suffering
rather than acceptance of suffering was the theological insight
I needed. The counselor I met with told me that I needed to
learn to accept my chronic pain in order to cope with the
feelings of frustration and overwhelming demands of therapy
combined with work and parenting. I couldn't accept it, and
began to feel like I failed counseling. My years in ministry
were about challenging and changing unjust societal systems,
not accepting what is harmful and hurtful. I brought that
same attitude to my recovery from RSD/CRPS. It wasn't fair
and I wasn't about to "accept it" like some mature
stage of chronic pain akin to Elisabeth Kubler Ross' stages
of dying. Pastor Jon taught me that for people of faith, there
is another stage when dealing with trials in life: transformation.
By the grace of God, it's possible to move beyond it.
Philip Yancey also argues that transformation
rather than acceptance is the path to overcoming suffering
in his book, Where is God When It Hurts? As I reached
out to others by starting a chronic pain support group this
year, learned to dance in worship again, and taught a class
at church using Yancey's book, the RSD/CRPS experience was
beginning to take new shape in my life. No longer was it simply
an intrusion in my life, but the means to inspire and help
others.
Susan Sonnenday Vogel's book, And
Then Mark Died: Letters of Grief, Love & Faith, was
important as she brought hope in the midst of fear. When trying
to cope with the searing pain of RSD/CRPS and the four months
earlier when the neuroma disrupted sleep and my ability to
walk, hope was elusive. Fear abounds with chronic pain: Fear
of the pain itself; fear of each new exercise that hurts before
it heals; fear it won't get well; fear I can't do my job right
when medicated, tired, confused and hurting.
It was hard to believe the encouraging
words of my physical therapists. One day, maybe six months
to a year from now, I will be well, they told me. I felt like
the caboose on the Island of Misfit Toys who had square wheels,
and instead of hoping for round wheels, he simply hopes that
Santa will take him to some girl or boy who will like a choo-choo
with square wheels. I found it hard to believe the foot would
roll smoothly again, and some days found that just to endure
was enough. I am thoroughly American, with the belief that
hard work will be rewarded. But after weeks and months of
dutifully following therapy instructions and exercises, plus
meditating and massaging the foot morning and night, for a
combined total of two to three hours a day, my hard work did
not consistently pay off. After respites from the narcotics,
I'd be back on them as pain flared up with stress, setbacks,
and new weight bearing exercises. Recovery was ragged and
the fear persisted that the RSD/CRPS wasn't going away.
So whence does hope come? Vogel wrote
this about dealing with the death of her son Mark:
The problem is that we always think of hope as grounded in
the future. Wrong. Hope is always grounded in the past. Hope
simply challenges us to remember, always, that we have survived
everything in life to this point…"
From her grief experience, I discovered
a hope that sustains me also. It gave me strength to get up
each morning at 5:00 or 5:30 to walk the treadmill, shove
paper across the floor, practice bearing more weight on the
scales, and more. Hope was not about being able to see a new
future - I'm not optimistic enough. It's also not about a
present hope. My trust that the pain will someday end falters.
I simply don't have the faith to be made well. But I have
found hope: a hope in remembering that I have survived life
to this point. |
