The Joys and Struggles of 'Total Disability'

In December 2016, I opened up a letter from my insurance carrier.

The sentence leapt off the page, “We have reviewed your claim, and have decided that you meet the criteria for total disability.”

I read it again, just to be sure I understood it. There it was: “total disability.” I blinked, stunned, and then drew a ragged breath.

The moment was bittersweet. A wave of relief washed over me, overriding my disbelief. I would not have to return to work. The pressure inside began to dissipate. A part of me almost felt giddy. I would not have to push through the pain anymore, nor would I be forced to live in a state of constant fatigue.

But another, more deeply hidden part of me registered this fact, and I found myself in the maw of a different kind of pain. I would not have to return to work. My heart broke as I realized that I had lost a crucial piece of my life. With a single sentence, my career was finished. Gone. Purpose, structure, a piece of identity – each felt like it was dropped over a cliff.

The letter was an enormous turning point in my cancer journey. In June 2012, at age 42, I had been diagnosed with early stage triple negative breast cancer. Surgery, dose dense chemotherapy and radiation treatment saved my life. But it also left me with a rare and debilitating side effect: chemotherapy induced peripheral neuropathy (CIPN). My nerve endings were severely damaged, and left me with chronic pain in my hands and feet. The constant burning and tingling sensations often radiated upwards, into my arms and legs, giving way to stabbing pains, electric shocks, and a dull bone ache. At its worst, it engulfed most of my skeleton, landing me in the hospital.

Despite these symptoms, I did my best to return to work following treatment. I was determined that cancer would not steal one more moment of my life. For two and a half years, I soldiered through increasing pain, more medications, and a baseline of discomfort that crept steadily higher. Finally, my doctor sent me off on short-term medical leave, tripling my medications and ordering me to rest and focus solely on bringing down the stubborn pain thresholds. Short term leave became long-term disability. Everyone – my employer, my insurer, and I – hoped that the cocktail of medication and rest would reset my body, and eventually I would return to my job as a secondary school vice principal.

But the cumulative impact of swallowing 20 two pills daily for ten months finally proved too much for my body. For six months, I vomited multiple times each day, until I finally went to the ER . Over the next few weeks, the hospital ran multiple tests to rule out a relapse. Finally my oncologist delivered the news happily, I was cancer free! But the CIPN was determined to be, “Permanent. Incurable. Difficult to manage.” Given that my body was faltering under the only tools available for symptom management, I was told my job was to rethink how I was managing my health.

“Find a way to live with this long-term side effect that doesn’t aggravate it,” the oncologist intoned. Yet she had no more insight or knowledge about how to do that than I. “Good luck – I will see you in six months.”

I turned to yoga, and high CBD oil, in an effort to find less toxic tools to manage the pain. Slowly, my body responded in a limited manner, and I was hopeful that I would eventually return to work. But I was blinded by the determination to “go back” to the life I so dearly missed. For months – and against the advice of the yogi – I pushed myself hard at the studio, ignoring the pain signals in my hands and feet because, “Permanent, incurable, difficult to manage,” meant I had no expectation of a pain free range of motion. If the pain was immutable, then I would have to simply push through it to ensure that the rest of my body was as strong and resilient as possible when I returned to work.

But I was wrong. The task before me was not one of reclamation. It was one of rebuilding. Creating a new life as a disabled person would only happen once I let go of my attachment to my previous, healthy life. It was a devastating reality check, leaving me bereft and grieving. Many months later, I still struggle to make peace with the label “total disability.”

Today, my life hardly resembles the one I had built prior to cancer. As an upwardly mobile, independently minded professional, my days were busy, stressful and fulfilling. Managing the beautiful chaos of a large public high school was a gratifying task that required grit, humor and an ability to put in long hours of multitasking in a fast paced environment. I miss being that person, and initially this liminal space was disorienting, like a wasteland of empty time stretching before me without definition.

Yearning for the past only prolonged my pain, however. Despite my grief, I have learned that letting go is the first step in recreating myself. My world now revolves around a single goal: keeping pain thresholds as low as possible.

Daily appointments with yoga classes, massage therapy or physiotherapy fill my time. Hours of yoga have begun to repair my sense of identity – the message that my value lies in the ability to “do,” by climbing the ladder of professional success, or achieving recognition in my field. Instead, I embrace an ethic of “asana” or “comfortable seat.”

Honoring my body, rather than fighting it by trying to overrule the pain has humbled me, but brought healing in the form of pain free range of motion at the studio. (Imagine my surprise at this discovery). It has required an enormous commitment to “satya” (speaking truthfully) about the daily pain and the many modifications this requires in my yoga practice. Telling the truth, however, led to the creation of a health care team that works together to solve the puzzle of CIPN. It is pioneering work, to be sure; my injuries are wily and surprise us with occasional flare ups. Yet in only a few short months, my health is improving. Pain levels are dropping; I have greater joy in my life.

I am not cured. But as the physical pain is tamed, I have discovered a different kind of healing in mind and spirit that will allow me to rebuild a beautiful new life. The first step was letting go. As Eckhart Tolle says, what one accepts, one can move beyond, and, “This is a miracle. What you fight, you are stuck with.”

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Thinkstock Image By: RossHelen