These are extraordinary times. Few of us could ever have imagined the broad swath of illness, death and economic destruction of a global pandemic. I am saddened and bewildered by our country’s lack of preparedness. I worry constantly for my fellow healthcare workers on the front lines, battling this virus every single day. I lie awake trying not to think about Covid-19 invading Talia’s body. Her respiratory status, stolen by CMT4J, leaves her with little to fight.
As we all go about our lives fighting, fearing, or fleeing this virus, it’s hard to know the best course of action. For most of us, we have been asked to fear and prepare for something we cannot see. We rely on—or ignore--dire warnings from the rest of the world, the CDC, our government, our neighbor. I am incredulous and scared. It feels like an altered state of dystopian reality, as I talk with friends and colleagues—on the phone, through a text, or while staring at my exhausted image on a Zoom meeting. Unfortunately, I know this feeling all too well.
I’ve become accustomed to living life with uncertainty and chaos.
* * *
Years ago, long before we decided to have kids, my husband and I took time off from our jobs and backpacked the Pacific Crest Trail (PCT), from Mexico to Canada. We planned for a year before leaving, working out all of the logistics, creating six months’-worth of dehydrated meals, plotting our route and off-trail stops along the way, ordering and testing the safest and most reliable gear and equipment. We hiked throughout New England, with full packs, simulating the weight we would need to carry on the trail over 2,650 miles.
In the midst of our planning, something horrible happened that would alter my life forever, plaguing me with incredible anxiety and self-doubt. I would never be quite the same person. PTSD and Imposter Syndrome would define me for years to come.
I thought our journey on the PCT would give me the space and time to heal from all of it. Instead, my anxieties and fears followed me like a shadow I could not shake. Our trip was an incredible gift, for sure, with endless panoramic beauty and crazy adventures, full technicolor Ansel Adams, 360-degree postcard views that left me slack-jawed from the Seussian plants of the Sonoran desert, to the snowy peaks and glaciers of 13,000-footers.
But underscoring it all was a feeling of unease and worry--an overwhelming sense of dread.
The PCT rides the crest and ridgeline of many daunting passes. We had already hiked over a thousand miles, fighting scorching desert temps and menacing rattlesnakes. We had found our way back after losing trail on a 13,000-foot glacier, at sunset, but for some reason a seemingly less challenging pass--Sonora Pass—loomed like a specter as we inched closer and closer.
John backpacking on Southern CA part of PCT
In the guidebooks Sonora Pass was notorious for swallowing up hikers who slid to their icy deaths with a misplaced footfall on its steep snow-pack. I read and reread that section of our guidebook frequently—okay, obsessively--memorizing every trail turn, every potential harrowing, icy traverse. But instead of feeling empowered by all of this information, I became more anxious.
Finally, the day of our climb over the pass was upon us. After sleeping at the foot of the mountain the night before, we awoke to gray skies cloaked in an eerie, billowing canopy of clouds pressing down on all sides. Snow or rain threatened at any moment.
This was long before the days of GPS-enabled phones, leaving us with only our senses and knowledge of weather patterns. After much deliberation, we decided to go.
I took a tentative step forward, concentrating on my feet. Step by step, pushing upward and onward. My legs began to cycle effortlessly beneath me. I peered back over my backpack straps intermittently, imploring my husband to hike faster. We stopped for brief breaks to fuel up with energy bars, GORP and water. Food was now a source of energy, no longer a time of enjoyment or relaxation. I ticked off each mile in my head, as we flew past trail markers, finally hitting the summit, pausing briefly to celebrate, then practically sprinting down the other side.
Jocelyn hiking on the PCT 2001
In hindsight, it was one of our easier passes, but the cloud of self-doubt that had consumed me from before even the very first mile, as we stepped from Mexico into California, had become my biggest obstacle.
* * *
Years later, my world felt familiarly upended, as it did before our hike on the PCT. We already had a healthy, spunky two-year old daughter, Teaghan. I worried some about losing our fierce, mother-daughter bond, about spreading my love beyond just my first girl, but our lives felt pretty perfect. It seemed life could only be made better by growing our sweet family.
Teaghan and Mom (Jocelyn): slobbery kisses 2003
But when Talia was born we learned she had Down Syndrome. My world fell out from under me as I worried about the person she might become. I had never known anyone with Down Syndrome, and suddenly all of those unspoken hopes and dreams that had filled my head throughout nine months of pregnancy felt like they were stolen in an instant, as Talia slipped from my body into the world.
My anxiety soared. I worried I would not love her. I worried about her future. I worried about heart defects and hearing loss, difficulties with breastfeeding—all common for people with Down Syndrome. My mind raced five, ten, twenty years ahead, wondering if she would speak or sign, go to Teaghan’s school—what would she do for work? I mourned those wordless visions I had held for her, in my head, for nine long months—skipping down the road, hand in hand with her sister, singing “Teaghan and Talia, Talia and Teaghan....”, playing soccer together, getting ready for prom—getting married and starting a family of her own.
Teaghan (2 1/2) Talia (2 days) - Sister Love
But when I stared into her blue-green eyes, peering up at me with so much observation and expectation, I realized the dreams I held for her were so many selfish assumptions and expectations for my unborn child. How could I have held these before I even held her? They were based on my childhood and life’s experiences, not hers.
I pulled her tiny body in close, encouraging her to nurse, each of us showing the other how to do so. We forged a quick partnership. I decided that breastfeeding was the one thing I knew anything about and made it my mission to succeed. I knew it was possible that she just wouldn’t have enough strength-- that bottle feeding might be easier. I tried to let go of the irrational stream of fears rushing through my head to focus on this one thing.
We became so close, so connected, out of both hope and loss—and love. Gobs and gobs of love poured out from every cell of my body and heart—a seemingly endless supply tethering me to my two beautiful daughters.
Talia ended up a breastfeeding superhero. Nursing became our thing. I knew she was healthy, after so many screening tests. I felt relieved that this was something I could do to make her even healthier. We quickly fell into a routine and I fell in love. Down Syndrome became a small part of our lives, its extra chromosome seemingly sprinkling a little more joy and magic over our family. We celebrated small things with gusto and those things that had previously seemed insurmountable became insignificant.
* * *
Eight years after hiking the PCT, our girls now a formidable duo at three and five, I found myself, once again, staring into the maw of devastation. Already challenged with weaker muscles and looser joints from Down Syndrome, Talia suddenly began to lose strength and hard-won milestones after a bad flu-like virus. At first doctors blamed it on her Down Syndrome. But then she got worse. We were handed a diagnosis of a rare, treatable disease. Endless treatments would follow—some helpful for a time, but in the end we would find ourselves down a long, winding path of misdiagnosis. After six long years we would hear the words every parent dreads: Progressive. Fatal. No treatment or cure.
Talia at 3; Teaghan at 6 - “Boatful of Love”
If you’ve followed our story you know this chapter.
This is the sad one. It’s still being written.
I wallowed in unspeakable grief, anger and sadness. I was heartbroken for my child, her life—our lives. How could one child be dealt such incredibly cruel odds? Her disease, CMT4J, is the result of two faulty mutations on one gene—one from me and one from my husband. The likelihood of someone else in the world having Talia’s same mutations is about 1 in 78 million people.
After days, or weeks of sleepless nights and rivers of tears, I found my lifeboat and climbed in. I armed myself with research and discovered the Rare Disease world, populated by brilliant parents and patients finding and funding their own cures and treatments because no one else would. I would become known as “Talia’s Mom” and feel both the power and the weight of the responsibility in creating Talia’s “muscle medicine”.
This was my guidebook, my power over chaos and hopelessness.
I knew medicine. I knew science—or at least a little. Perhaps I could rewrite the ending for this chapter.
* * *
Three and a half years later, we still don’t have our happy ending, but we’re closer every day, inching forward toward a gene therapy trial in a messy world of science, drug development and regulatory guidelines.
And just as we sign contracts to fund new research, we find ourselves in the midst of a global pandemic.
A novel, opportunistic virus that started in one, single human being has now spread rapidly around the world. Over the last three months, I’ve watched the numbers grow exponentially, spreading from one country to the next. I listened to the pleas of health care workers in Italy and began to hunker down. I gladly accepted shut-downs and social distancing guidelines in our state, as they gradually became more restrictive.
Early naysayers comparing Covid-19 to the flu now realize this grave mistake. As the numbers in our country surpass 300,000 and our death toll nears 10,000, the notion of “flattening the curve” could not be clearer. Influenza carves its path of destruction over many months. Here, our hospitals and health care workers are being asked to take care of the same number of people or more, in just a few weeks, many of them requiring far more aggressive and invasive medical intervention than the flu. Doctors, nurses, PA’s, NP’s and others are getting sick and dying. In some areas we are running out of front-line personnel, PPE, ICU beds, ventilators and spaces in the hospital morgue. Refrigerator trucks, the national guard and whole armies of medics are at the ready.
All at once I crave and abhor more information. My medically-trained brain wants to know the facts. My anxious brain fears Talia will get sick. She and my sweet, beloved Mom—and millions of others—fall into those highest risk categories. I cannot stop thinking about life without them.
It feels as though the wolf is waiting outside our door.
So much is on hold, as we wait, endure, respond. Businesses have shuttered their physical spaces as though preparing for a hurricane. Economies large and small may collapse. In our house, beyond classes, friends and school events, Life is on hold in many other ways. Talia’s medical appointments and therapies get erased from our calendar each day. A surgery to straighten her spine with a 75-degree curve was planned for this Spring. She needs the surgery to help with breathing and to sit more comfortably. It too is on hold, deemed “elective” and far too risky to be done in any hospital right now. I worry we are losing our small window of opportunity—that by the time surgery is possible, her breathing and curve will have worsened, making an already complex surgery more difficult.
Crazy clothes in crazy Covid times…Global Pandemic, 2020
Extraordinary times. Extraordinary measures.
When the anxious noise in my head grows to a deafening roar, I look to other times I have felt such dismay and chaos. Where is my guidebook? What are my resources?
We are on Day 25 of our self-quarantine in order to provide a protective bubble for Talia. She would never survive Covid-19. We go out only for walks, runs and bike rides. No one comes in. I try to extrapolate our hunkering down to knowing that we are four less patients for our already-overwhelmed health care workers.
I don’t know how long our bubble will last, or how long we will have to maintain its borders. But for now it is the one thing I can control. It is all I have. It is my super power.