Hope, Despair, and the Suicide Disease
With a diagnosis of CRPS my best hope was physical therapy, where I would learn the true meaning of the cliché “No pain, No gain.” Each session began with the same set of painful flexion and range of motion exercises. Then, we progressed to deep oscillation, infrared light therapy, and a new therapy that took the innocent name of Contrast Baths. The therapist filled two kitchen-size trashcans with water and sat me beside the tubs. One had water between 96-106 degrees, the other had a half and half mixture of cold water and ice. I plunged my left leg into the ice water for ninety seconds, lifted my leg, rotated, and immediately dropped it into the hot water for thirty seconds (no hesitation allowed), repeating this back and forth motion for twenty minutes. Athletes may be familiar with this practice from days when it felt good. But for me, because my left foot was already hurting and Allodynia enhanced every pain sensation, the Contrast Baths were barbaric. Other therapists walking by my station congratulated me for not screaming. I wish I could’ve shouted a string of ear-piercing profanities that would’ve made a sailor’s teenager blush. If only I could, but I couldn’t. Each time I moved my leg, pain assaulted every synapse of my mind—a thousand voices screaming in a thousand different languages at the same time, like the Tower of Babel or the Pit of Hell. My tears ran to the rescue, but no words, no audible sounds.
Contrast Baths are one of the only known treatments for early onset RSD. The idea is to shock the nerves back to their senses by helping them recognize a radical difference between hot and cold. If it works, the nerves will also be stimulated to recognize the difference between no pain and pain. So, three times a week at the hospital and twice more at home, for a month I sat watching a clock and counting the seconds.Unfortunately, however, no one told the nerves in my foot what they were supposed to learn.
In late October of 2008, I sat in an exam room waiting for Dr. B—. He knocked, stepped into the room, saw my left foot, touched it, and left the room to make a phone call. By the end of the next week I was in surgery with Dr. Pierce, a neurosurgeon who transected (cut) part of the Posterior Tibial Nerve, the same nerve that Dr. B— had already “Released” and “Re-Released” in earlier surgeries. I didn’t realize it, but CRPS often causes nerves to restrict blood flow to the affected hand or foot, causing one foot to be cool or even cold to the touch while the other is toasty warm. In fact, at times the nerves may become dangerously confused, believing the foot to be in peril and ordering nearby blood vessels to constrict to the point that the circulation and wellbeing of the foot itself is threatened. When this happens the nerves must be stopped before they cause permanent damage. Consequently, my third surgery was the shortest: a small incision to transect (cut) part of the Posterior Tibial Nerve, restoring circulation to my foot, and leaving the bottom of my foot permanently numb—with the bonus gift of sporadic phantom pain.
By the end of 2008, I lived at the end of a yo-yo. Some days were tolerable; other days it took all the energy I could muster just to do what had to be done; and most days were spent somewhere between the two extremes. I bounced back and forth between hope that somehow I would get better and the despair of hopelessness. Like everyone else looking for a miracle, I surfed the web looking for magic potions and holy water. Unfortunately, my doctoral training had instilled a strong sense of critical thinking in me that by nature distrusted the Internet. My only ace was Dr. B—, who could tell the difference between a hoax and the real thing, and who kept his eyes and ears open for my sake—which takes us to my fourth surgery.
In November of 2008, Dr. B— learned about a new possibility, implanting a Medtronic neurostimulator to manage chronic pain. The concept was not new; thousands of us have used external TENS units (short for Transcutaneous Electrical Nerve Stimulation) with electrode patches, cables, and the small beeper-sized controller. An implant, however, would take the same basic technology (with advances) to permanently attach the leads into the epidural space of my spinal cord so that it could send electrical impulses down the nerves in order to break up the faulty signals constantly traveling up my legs. The process is somewhat like causing an intentional traffic jam on a major highway so that the bad guys get stuck and caught in traffic, never reaching their destination. All this was possible for me, ifI would bite my tongue and return to Dr. Frank (the only doctor in Abilene with neurostimulator patients) and if I passed an initial trial phase.
So despite vows never to return, I went back to Dr. Frank for a three-day trial in mid-December. In a brief office procedure, Dr. Frank slipped a set of leads just below the skin in my lower back. A Medtronic representative then tuned me up and showed me how to operate the remote control. Three days later I returned to declare the trial a success and scheduled surgery with Dr. Pierce, the neurosurgeon who had already operated on me once. Truth told, however, I don’t know if the positive results came from what the device actually did for me or had more to do with my hope for a cure or some tool to manage the pain. I think it probably helped a little. Regardless, it’s difficult for me to imagine that anyone with severe chronic pain would self-report the failure of any test, procedure, or implant that has the slightest chance of providing relief. If there is just one chance out of a hundred that an implant could help, I’d sign up then and I’d still sign up today. I’d be damned before I let any opportunity leave me behind.
On Friday morning January 30th of 2009, as I waited outside of surgery, Dr. B— walked by, saw me, and stopped to pray for the success of my surgery. A few minutes later, a nurse rolled me in, and an anesthesiologist put me to sleep for almost three hours as Dr. Pierce placed the electrical leads, implanted the control pack above my hip, used a rod to shove the wires under my skin from my spine to my hip, and made the connections. Once again, technically, the surgery was a success.
Hope motivated my first and second surgeries (with a pinch of desperation for the second). Necessity led to the third (or face losing my foot), and hope returned with the fourth. The Apostle Paul wrote that “faith, hope, and love remain—these three things—and the greatest of these is love.”I suppose Paul was correct about life in general. But for those with CRPS and other chronic condition, all I know is that hope, desperation, and necessity remain—and the greatest of these is hope.
Hope is like an exponential factor that increases the value of a treatment as in the formula: treatmentHope. Therapywith a little hope is therapy1(2 x 1 = 2). Therapy with much hope is therapy3(2 x 2 x 2 = 8). But therapy with no hope is therapy0(2 x 0 = 0). Our bodies are complex systems in which the physical is influenced by our emotions and attitudes, and our emotions are influenced by the physical. It’s a dynamic positive loop that will make or break anyone dealing with pain of any type: physical, emotional, or mental.
I’ve learned that I can’t afford to lose hope. Which means I can’t allow myself to dwell on past mistakes, whether I should have done this or done that, or let my mind glide ahead and think about what my life will be like in a year or five years—because both destroy my hope. The best I can do is live now and manage or cope with today’s pain. Accepting and living within the present moment is the key to serenity and a hopeful outlook. My only exception to this rule comes with my therapist, Dr. Friedman* (not his real name): only in his presence do I allow myself to wander into the future. His office is safe space to think about the spread of pain, to imagine what I might be like at sixty-five, and to cry. It’s safe, because he knows how to guide me back from the future to the present and because when I leave his office, I leave those worries—at least theoretically.
If it sounds like I had it all figured out, trust me, I didn’t (and still don’t). I really didn’t get a clue for another two years when I went to the Baylor Pain clinic in 2011, and it took until 2014 to find a therapist who knew something about pain (i.e., Dr. Friedman). During the early years of confusion and surgery, I spent most of my days waffling between hope and despair, with despair winning out almost every day. And as my pain increased, I sank into depression. I’d get a temporary reprieve with the promise of a new drug, another doctor to consult, or another surgery that might fix the problem and put an end to this madness. I might even become a little hopeful, at least until the same results and disappointments would again crush my spirit.
Had it not been for Dr. B—, I don’t know whether I would have survived these early years or become another statistic racked up by the suicide disease. No other doctor was insistent on seeing me. No other doctor kept looking for answers or kept making phone calls on my behalf. Dr. B— refused to give up on meand he refused to let me give up on myself.When I couldn’t muster the courage to believe in myself, or the strength to summon hope, I stayed alive because he held onto hope for me.
—to be continued—
Excerpt from a working manuscript, A Fire in My Bones: A Memoir of Life with CRPS (copyright Glenn Pemberton).
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 1 Corinthian 13:13 CEB