As my anniversary of a life-changing surgical complication approaches, I wanted to share the background of what led me to write about my journey with pain and the ultimate gains that resulted. It is my desire to pass on the hope that others once gave to me. But first, I will go back in time to my first trauma in life.
Thrown Under a Bus
At the tender age of twelve, I asked a plastic surgeon, “How long will this inconvenience me for?” A school bus driver had accidentally driven over my leg the month before and I was scheduled for reconstruction surgery. The urge to move has been wired in me since childhood, when I was often found fleeing from my crib or climbing a backyard tree.
It takes a lot to knock me off my feet— even getting “thrown under the bus” did not deter me for long. Over the years, God tried to show me I needed to stop in order to move forward. It only took thirty years to get my attention. This time it was my other leg that faced an unexpected trauma.
An Interesting Find
Once again I was quizzing a surgeon, “How long will I be down for?” I struggled to focus as she explained the “interesting find” on the image displayed before me. “We will not know what we are dealing with until we go in there,” she explained. “It needs to come out.” My first question was, “When I can start biking again?
Months earlier, unaware of the large mass in my ankle, I had completed a two-day, 204-mile bike ride. (I swear they must have moved the finish line!) When I felt lingering ankle pain following the event, the doctor had suggested an MRI. Impatient to get past this latest obstacle, I opted to move the surgery date up and miss the skiing trip I had eagerly anticipated. But I did squeeze in a lengthy bike ride through the coastal hills of California to tide me over the six weeks on crutches.
Worst that Could Happen
To help me visualize the surgery and to prepare me for the recovery period, I signed up for a Mindfulness-Based Stress Reduction class. But I could scarcely sit still through the monotonous meditations. The moving meditations saved me, as we got to move past nature pictures and windows. Outdoor activities had always been the outlet that took my mind off worries and centered me.
At my pre-surgery appointment I asked the surgeon “What’s the worst that could happen?” I could make worry a professional sport. She looked me in the eye and said calmly, “If it’s cancerous, the foot would have to come off.” I vowed to stay active, no matter what.
After weeks of neurological weirdness and panicked calls to health professional friends, I returned to my surgeon. “The rules have changed now,” she stated firmly, as I stared glumly at my swollen purple limb dangling from the end of the exam room table. “The walking cast and nighttime splint will have to go.” “You will have to desensitize your foot. Practice walking over pebbles.” With that, she handed me a flier on “CRPS.” I had little time to celebrate that the mass was benign, a malformation of arteries and vessels.
Nervous System Overload
Now my mind raced through the handout describing three stages of a rare nervous system disorder, each worse than the last. There was no cure. But remission was possible. For some people. If the condition was caught early and patients responded to treatment. Even after recovery, one could relapse.
“You have developed Complex Regional Pain Syndrome,” the surgeon continued. This condition, also known as Reflex Sympathetic Dystrophy (RSD), causes the nervous system to flood the body with a disproportionate amount of pain signals until the effected limb contracts and becomes debilitated. The nerves malfunction to the point where the whole nervous system gets confused. Pain sensors do not know how to turn off, yet avoiding using the injured limb can lead to permanent pain or disability. Worse, the body can get stuck in the sympathetic nervous system–fight or flight mode–and pain can can spread throughout the body.
I despaired as I hobbled away from the surgeon, without the security of the cushioned boot cast, fearful of all the obstacles that awaited me. How could she do this? I felt like a bird being pushed from the nest, not yet ready to fly. Dejected, I fixated on my left limb, drooping downward as if paralyzed. Immersing it in warm water caused dizziness, yet the foot continually felt cold and clammy. Trying to walk on it was like stumbling on a leg that had gone to sleep. After a few minutes, it would swell to grotesque proportions and turn an alarming shade of purplish red, from the knee down. Six weeks post surgery and I could still not weight bare. My six-pound puppy brushing against me caused me to yelp in pain. (Here is a summary of symptoms of my first 60-days with CRPS).
Finding a Support Structure
In an effort to cheer me up after the diagnosis, one thoughtful friend brought a wheelchair over, knowing I missed getting out on two wheels. Sadly, even the vibrations of the pavement would pulse through my elevated leg making it difficult to maneuver. I reverted to crutches but could manage a few steps before the muscles seized in spasms. I willed my toes to move but they barely budged. In the lonely hours of the night when fear overtook me, I listened to Christian radio stations and read inspirational magazines for comfort. I already had chronic sleep issues before. Now this. “How am I going to get through this?” I cried.
God spoke to me through friends and family, who wrote notes of encouragement or dropped by with cards, DVDs, meals, and acts of service just when I needed them the most. One dreary night, I longed to talk to my childhood friend, but could not call her due to the time difference. At 9 p.m. a florist suddenly appeared at my door with a cheerful bouquet from my friend! I knew then how much God loved me. And He was allowing this trial to draw me closer to Him.
Still, I was not content to be confined to the couch. A stack of books I had vowed to read remain untouched, as I could not summon the concentration to read them. “I can teach you how to knit,” one industrious friend suggested. I did not attempt a single stitch. How could I accomplish anything with my leg elevated above my heart for weeks? When the foot swelled up again on standing, I returned to lying down for an hour at a time with fifteen minutes upright in between.
I eventually found pain relief in a medication that my friend, who specialized in nerve disorders, had emphatically recommended. Primarily intended for epilepsy patients, it came with a pamphlet of warnings. “Don’t read all the side effects,” the pharmacist warned, “Or you’ll be too afraid to take the medication.”
Taking Charge of Treatment
Eager to take charge, I researched treatment options, and scanned the Internet for success stories. I emailed my health contacts again for ideas, ready to resume control over I body I felt little control over. Finally, I surrendered and released my worries to God. And He sent me the perfect person to heal me. When I heard the same physical therapist recommended twice in one week, I looked to Lisa to give me a new lease on life.
“You better not read too much about the condition,” she warned me. Then she immediately cleared her calendar for three appointments a week for the next two months. When Lisa said, “Let me do the worrying for you,” a huge weight lifted. Isn’t that what God does for us? “You will be walking by your birthday,” she promised confidently. “Or I’m not doing my job right.” Her enthusiasm and energy filled me with optimism. And gave me hope!
Pool walking with Seniors
Within two months I graduated to pool walking with seniors, too proud to use the pool lift to ease myself into the water. Then I advanced to crutch walking up the gym stairs, purposefully avoiding the elevator in order to push myself. This was an improvement over the toe wiggles and ankle pumps, which was all I could manage initially.
Lisa had me wear a device to stimulate my nerves, and apply ice compression every day through a machine called the Game Ready. Boy, was I ready to get back in the game! But Lisa insisted I wear a heart rate monitor during exercise and not go past a certain heart rate: she knew my personality type. When I could stand on one leg, she let me mount a bike. Then made me promise to ride no more than three miles at a time. “Oh, did you mean round-trip?” Right!
Learning to Slow Down
Lisa taught me how the most gentle, deliberate movements delivered the best results. Too often I rushed through life, pushing aside things in my path, anxious to get to the next step. She taught me that life is not about achieving the next goal, but on focusing on the present task. “Don’t forget to breathe!” she would remind me during our exercises.
In all that hurry to move on with life, I learned to find calm in the stillness. Were all those arbitrary commitments and tasks I had previously filled my time with really that important? I stopped mulling over the things that typically consumed me. And I started to accept the help of others. As weeks turned into months, I found simplicity in reducing my life to a minimum of tasks. I learned to conserve energy, to pace myself, and to surround myself with positive people. Negative emotions were stifled, as I intentionally filled my mind with stories of hope and Bible verses to find strength for each day. One night God gave me a dream about walking effortlessly. I never imagined, then, where real life would take me next—racing in triathlons. And running half marathons. I prayed to walk again and He gave me so much more!
During recovery, I had felt indulgent and unproductive spending so much time on self-care, but Lisa reminded me that all I was doing was important. I even learned to meditate. In that time of forced inactivity, I did not ask God, “Why me?” Instead, I accepted my fate as a sign that God loved me enough to slow me down and capture my attention. And He used the thing I feared the most–losing my mobility–to become my greatest gain.