Silence may be golden, but what happens when it becomes a thief of the thing that so beautifully defines you — your power to communicate, protect, embrace, comfort, soothe and care not just for others, but yourself?
I lost my voice May 27, 2014, and didn’t utter a word until that November.
It started with a scratchy throat. It hurt mostly in the morning, and only on one side. I attributed it to allergies from my new environment, since together with my husband and two small daughters we’d traded Venice, California, for my husband’s childhood home of Manchester by the Sea, Massachusetts, in the hopes of finding a quieter rhythm for our family. And despite all the novelty of our new life and routines, I felt what I would now more honestly identify as “terrible,” but at the time rationalized as “tired.”
Relocating was a shift in my identity as much as our geography. Los Angeles had made sense to me; I had a place in that world. By definition, I created voices – for people, stories, brands and ideas – and used my own to encourage others to find theirs. By contrast, I was now referred to as the wife of my husband, or the daughter of my mother-in-law. Suddenly, I was a plus one. Maybe, I reasoned, what I’m trading in community, visibility, and credibility I would make up for in seasons, scenery, and the contentment that comes with walking my children to a (nationally-rated public) school.
The gradual fatigue I felt that first winter was easy to defend; suddenly, I had few friends, my women’s community was 3,000 miles away, it was 14 degrees outside, and the two invitations we did get – cocktails at the country club and a pancake breakfast at the firehouse – were easy to wave off. As “Josh’s wife,” my conversations felt limited to the minutia of real estate prices, summer camp considerations, babysitter shortages, and the unrelenting doldrums of kitchen remodels. Cordial chitchat was a sport in this part of the world, and not one I had ever trained for or appreciated.
Not one to complain, I didn’t mention much to my husband despite the fact my sore throat was becoming chronic. I found explanations for the phlegm I was dredging up in the morning, as well as the night sweats that occasionally woke me up and forced a complete change of pajamas. Besides relocation, commuting monthly to LA and New York for work, chasing two kids under five, and the general demands of domestic life, something was wrong.
Paralyzed by the idea of finding a doctor in my new location in the world, I resisted investigating. But once I did, allergies, relocation stress, and peri-menopause were just a few earnest attempts to connect the dots. Blood work showed only slightly abnormal white blood cell counts, indicating my immune system was fighting off something, and I was only happy to assign a more benign rationale for my deterioration. Out of sheer terror, I didn’t voice my desire to order more comprehensive tests.
By Memorial Day, the prospect of moving into our new house felt insurmountable. My voice had diminished in volume in just a few months, I wore baggy clothes to conceal my weight loss, and felt as though I was hiding something from the world.
That Sunday, with our life in boxes, and with what should have felt like a new, unscripted future ahead of us, I woke up in my new house, drenched in sweat, with no voice at all.
It’s hard to explain why almost three months of summer went by with no clear diagnosis. While I did go to different doctors with a range of specialties, each visit felt like one step forward and ten steps back. I built a career on creating voices for others, yet suddenly felt at sea without mine. I was disappearing – physically and metaphorically. When the medications didn’t work, and even the doctors scratched their heads, I began to face a darker reality. We booked an appointment with a leading throat doctor at Mass General who would see me in 3 weeks.
My nights were sleepless. I spent most all of them exhausted but awake, gripped by endless bouts of coughing, sweating, and choking from throat spasms that rendered me unable to breath for seconds at a time. I slept in the guest room, where I wouldn’t disturb my family, and got familiar with the historic clock in our village chiming the singular bells leading to 5am, when it felt like most of the world was waking up to normal days of summer recreation and work commutes. These were the bleakest of hours. My first thought upon waking would be, am I better? After so many days, with no improvement, I stopped asking.
Fear choked me; I wanted answers, yet pressing harder for them meant facing whatever was next. Without the ability to speak, I felt justified in a strange passivity. Consumed with what a fatal diagnosis would mean to my girls, still too young to realize how sick I’d become, I reasoned that if I just didn’t get one, it couldn’t become real.
What is so often a given, for me, was gone. I couldn’t call my kids for breakfast, read them a story, or answer a single curious kid-question. When my husband was on the road, I resorted to old movies and TV shows, reasoning that if I had to replace parenting, at least it would be with what I grew up watching myself: Little House on the Prairie, Wizard of Oz, reruns of Leave it to Beaver on TCM. I withdrew from my husband who was now shouldering the load of speaking and doing for us both, but who also found it hard to understand why just a quick trip to the beach was too much. I couldn’t bring myself to write what I felt might be really happening to me, so I didn’t.
Isolation, in the midst of the people I loved most, became my lonely paradox. My family worried about me, tried to reassure me, sought out doctors and opinions and did all they could to help, yet, without a way to express myself audibly, I felt invisible in the world, compounded by living in a town where I felt unknown.
By late August, a CT scan of my neck and throat in preparation for my appointment in Boston revealed nothing alarming, but imaging of the upper part of my bronchial system did. The blood work that had showed only slight elevation in white blood cell count previously was now sky high. Finally, I was admitted to Mass General over Labor Day having dropped from 128 pounds to 103. After an emergency room chest-x-ray, six doctors returned to my room wearing masks and protective clothing with a handful of hypothesis. Five days later I had a confirmed diagnosis of tuberculosis – which had festered for so long that it had traveled to my larynx.
Of the multiple options the doctors presented, TB was, by far, the best. After Googling the others, I actually prayed for it.
Three weeks in an isolation unit and nine months of the heaviest antibiotics the liver can stand, my treatment ended in a cure. Voice rest and therapy (no whispering allowed), returned a version of my old voice (albeit less smooth and with zero range). I have lung scarring that makes cardio the hardest thing I do every day, and I breathe hard at things most people do without thinking. But my illness, because it ended in my favor, has been one of the biggest gifts of my life. I’m awake – in a way that someone who has never faced her mortality might never get an opportunity to be.
No matter the stress I face now, whether professional or interpersonal, nothing touches the fear of having to say goodbye too soon. That juxtaposition against the trials of deadlines, traffic, marital disagreement or financial worries, creates a welcome filter on big deal…and no big deal.
I’ll never know how I got sick, which is only worth mentioning because people who contract contagious Victorian diseases usually do. But among the many insights I’ve taken from the experience, losing my voice and its impact on my sense of agency and self-worth is astonishing. As my voice faded, my ability to fully advocate for myself also vaporized. I see now how a sense of powerlessness can strike – given the perfect storm of circumstances – to even the most empowered person.
Silence thrives on the fear of consequences that can arise from speaking up, and the painful or sometimes unconscionable truth it can reveal. But I think the only way to measure whether it’s worth it, is to calculate the costs of keeping quiet.
Today, the first thing I say to myself upon waking is: I’m healthy, and I’m here.
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