The birth of my first child, as is often the case, wasn’t routine. On a Sunday night in October 2012, my husband, Chris, and I checked into the hospital to induce labor. We quickly learned that the jokes I’d been making about the size of my husband’s rather large head being passed on to my baby weren’t so funny: Our son was wedged sunny-side up. The Pitocin forced my body into contractions, but I wasn’t dilating fast enough. My son rocked back and forth with the spasms—bruising and cutting his head—and I clutched Chris’ hand when each movement slowed our baby’s heartbeat. Many times, I thought I was too exhausted to continue. Finally, 33 hours after we’d arrived, my doctor made a six-inch horizontal incision across my abdomen, cut another slit into my uterus, and pulled Oliver into our world.
The anesthesia rendered my arms useless, so Chris held our new baby to my chest and we all stared at one another with the amazed reactions that are unique to seeing your child born. Time slowed, as if to remind me to capture the moment like I would a fact in one of my reporting notebooks. I mentally tucked it away, laughing while tears of joy and exhaustion rolled down my cheeks onto Oliver’s wrinkly skin and Chris’ cradling hands.
It would be minutes before feeling returned to my fingers, weeks before I could walk without wincing at any movement involving my stomach, and three months before I returned to work. Every day, I’d examine my new scar, a bubbling, wavy pink line that stretches across my abdomen. I was amazed it was healing so quickly and that my son was already so strong.
But I couldn’t help but wonder why I was still so tired.
As a journalist, I frequently dig into the darker corners of life in an effort to extract not just facts, but also truths. At work, I’m meticulously—and among my colleagues, comically and notoriously—organized with spreadsheets, binders of notes, and boxes of documents. I tend to leave this orderliness at the office, so when it came time to have my first child, I never made a birth plan. I didn’t read books. I hadn’t even researched what could go wrong during labor. I figured women had been doing this for millennia, I had a good medical team, and my son and I shared a mutual interest in our mutual survival.
I’d soon learn how many varied and unexpected types of survival there can be. Shortly after my maternity leave ended, I leaned over to hoist Oliver out of his crib for a 2 a.m. feeding. His owlish brown eyes stared as I tried again and again to lift him, but my thumbs and forefingers wouldn’t grasp his body. Eventually, I bent over farther, nudged him into the crook of my arm, and swung him onto the bed to nurse. Despite the warnings I’d heard about co-sleeping with your infant, I didn’t have the energy and strength to move him back to his crib. Chris threw his arms around both of us, and Oliver dangled a pudgy leg over my arm, kicking gently at my C-section scar while we all dozed until the next feeding.
In the morning my fingers were moving again, but it felt like I’d sprained every joint in both hands. A quick Google search suggested it was probably a case of carpal tunnel syndrome caused by nursing. The more I researched, the more I realized nursing can cause any number of odd health problems. That must explain my fatigue. I concluded the lingering pain was just another humbling body change all new moms must face. I was even a little proud of it: Look how much I’ve sacrificed for my son.
Just when I’d learned to ignore and endure these minor physical hints, my body began sending me major warnings. On March 13, 2013, as I was about to walk across 17th Avenue after a family dinner, I turned my head to the right. Like all the routine gestures I made that day, and every day, the moment should have flitted past unnoticed. Instead, what I saw froze me.
Rather than the normal three lanes of traffic streaming toward me on 17th, I saw six. My right leg paused midstep. I blinked, then jerked my glasses out of the way. I stared and stared until Chris, startled, shouted at me to get out of the street. As we situated Oliver in the car and clicked our own seat belts into place, I kept looking right. I couldn’t get the images in my eyes to merge. I explained everything to Chris—and again attributed it to nursing and just needing some sleep. I didn’t need 20/20 vision to see the concern spreading across his face.
It’s been Chris and Tasha longer than it ever was Chris or Tasha. We met in 1994 at an after-school meeting for the high school Student Congress team. He was a junior and wearing a letterman jacket, which was all I, a ninth-grader, needed to know. It took me a little longer to realize that this soft-spoken boy with sea green eyes had the gentlest soul I’d ever encounter. He was a rapt observer who could detect the tiniest shifts in my moods. And I, more than anyone, could make him laugh, constantly and with abandon.
The ability to turn on someone’s smile is a simple foundation for a relationship, and it was all we needed during those awkward high school years when “dates” involved studying at the library or lo mein takeout while watching Tommy Boy. And maybe it’s all anyone needs. Chris and I have survived seven years of long-distance dating as one or both of us went off to college and graduate school and semesters abroad. We’ve held each other steady through family crises. We’ve endured two decades of transformations that have changed us—emotionally and physically—into different people.
Last spring, Chris wasn’t smiling much. Always practical and measured, he urged me to call my doctor; I preferred to do more research online. But he was unusually insistent, and I finally agreed. The doctors, it turned out, were worried, too. They told me to eat only protein—I have a history of low blood sugar—and to call them if my vision didn’t improve.
Two days and a half-dozen fried eggs later, my eyesight was worse. After blood tests and a visit to the eye doctor, I learned about the right sixth nerve, which controls eye movement. Something deep inside my head was causing this nerve to malfunction, and an MRI might reveal what it was.
When we arrived at the appointment, Chris held my arm, guided me into the room, and helped me onto a gurney. He held my hand, stroked my hair, and watched as the skittish tech poked an IV into my arm. As the tech tucked a blanket around me and wedged my head into a rest so it couldn’t move, he explained the 45-minute process. I had to remain perfectly still so I wouldn’t blur the images like some Victorian-era photograph. Halfway through, they’d run contrast dye through the IV to see how the fluid moved to my brain and identify any depressions where it might pool. My primary concern was whether the dye would prevent me from feeding Oliver later that day. He’s with his grandparents. I have enough frozen breast milk for him, but I’d like to feed him when I get home. It’ll make us both feel better.
In that moment, Oliver’s feeding schedule may have seemed trivial, but pondering it was the only way I could keep the voice in my mind to stop from screaming, What if this is something serious? The tech assured me I’d be able to breastfeed and quickly went back to his script: MRI machines bang, clang, and chime, he said, and he gave me earplugs with the caveat that they probably wouldn’t make much difference. As the machine started hammering, Chris watched me lie on the gurney, my arms crossed protectively over my C-section scar. The noise helped drown out my internal warnings. I was so exhausted I fell asleep.
I have a mostly typical collection of scars. There’s one on my forehead from the obligatory coffee table run-in as a toddler. A long one runs from the back of my knee to my ankle, a souvenir of my tangle with a barbed wire fence. Another has lined the side of my foot ever since I stepped on a rusty metal shard in a creek bed. And, as the MRI revealed, I have four more scars buried deep inside my brain.
When Chris arrived home on the day I received my MRI results, I was waiting outside. I didn’t cry when a stranger called with the news of the abnormal activity in my brain. I didn’t cry when I picked up Oliver and leaned in to smell his hair and hold him close. I didn’t cry when I handed him to Chris’ visiting parents to watch him while I spoke to Chris. I remained dry-eyed as I stood sentinel at the edge of our driveway. But when my husband climbed out of the car, unsmiling, as if he already knew—had always known—I fell into his arms. He held me up so my knees wouldn’t sink to the ground. That’s when the tears came.
“They think it’s multiple sclerosis.”
We paced our block as I recited—between heaving sobs that threatened my balance—everything I’d learned while researching MS in the past hour. I’m not going to die from this. Most likely, I’ll die from something else. Probably cancer. My dad had cancer. Maybe heart disease. As many as 350,000 people in the United States have MS. You know that only about a third of them end up in a wheelchair? I could get used to using a cane. I’m going to be walking at Oliver’s high school graduation. I might go blind. I may not be able to walk. I will be crippled.
After a few minutes of this, Chris stopped. He hugged me so firmly and so close I could not only hear his heart beating, I could feel it. “We got this. We got this. We got this,” he softly repeated, until I stopped gulping air and could look him in the eyes. That’s when I realized it wasn’t just me who had been diagnosed. We had been diagnosed. And we—Chris and Tasha—had no idea what that meant.
When life is uncertain, it often helps to return to your most elemental self, so Chris and I did what we used to do in high school: We studied together. He researched the medications. I obsessively collected stories of people’s battles with MS. We’d compare notes, talking in hushed tones after Oliver fell asleep.
Stress, heat, and conditions such as postnatal hormone drops can cause exacerbations or symptomatic flare-ups, which is what happened in March 2013. It would be almost two months before my eyesight returned to normal. Recovery from that episode took about a year, and I moved through it knowing my vision might not improve and that the scar pressing against my sixth nerve might not recede. I also had no idea when I’d have another exacerbation.
Faced with so many unanswerable questions, all we could do was wait. Being me, I couldn’t. I went right back to work. I even took a yoga class in an overzealous attempt to prove I was getting better. I rolled out my mat, breathed through some oms, and stood to start a tree pose. The instructor talked us through the routine: Ground through your feet into the earth. Find your core strength. Now lift one leg….
As I tried to concentrate on her instructions, I was panicking inside. I couldn’t really feel my feet, and my left knee was off, too, as if it were full of jelly instead of bone and tendons. Tingling numbness rippled through my arms. My head felt too heavy for my neck, like it might crush my vertebrae and collapse onto my torso. I was in shock for the rest of the class, barely moving as the other students flowed through their poses. Toward the end, as we all lay flat on our mats in “corpse” pose, I sobbed.
The disease didn’t stop there. My left foot began to drag, which made me stumble or fall so violently that twice my big toenail ripped away from the nail bed. I’d have occasional bursts of pain in my head, never in the same spot, that felt like someone was pounding a nail out of my skull. I couldn’t edit stories—one of my primary duties at work—because the pain of reading would have me in tears. Holding a thought long enough to string together a sentence became so difficult I finally took a three-week sick leave.
I was going emotionally numb, too. The way some people reacted to the news of my diagnosis presented more unwelcome challenges. They’d stare at me, stammer something about Oliver, and either start crying or, worse, try to laugh it off. Despite their best intentions, it’s difficult for many people to hear news like this and not instinctively think, “Thank God it isn’t me.” I could see the thought flash across their faces, and it was like being told I had MS all over again. To avoid that moment, I started sending emails, and even posted a Facebook announcement, so people could sort through their feelings before sharing them with me.
After spending my career covering newsmakers, now I was the news, and it brought unexpected consequences. Since my diagnosis, I’ve severed ties with friends who were coldly dismissive of my situation—or who just chose not to deal with it, or with me. Other people treated me with unexpected kindness, such as the legion of co-workers who started delivering daily meals to my doorstep, the most considerate get-well gifts I’ve ever received.
I needed those positive thoughts because I was angrier than I’d ever been. New moms shouldn’t feel this exhausted. I shouldn’t have to stop breastfeeding because of medication. I should be worrying that Oliver might spit up, not that I might fall while he’s in my arms. I was furious that I couldn’t read. Or walk. Or see. I was incensed that this disease was attacking my brain, the most important part of my body, the very core of who I am.
I spent hours lying on my couch, staring up. I pondered all the things I couldn’t do and wondered what I’d still be able to do. I wanted to keep hiking and running, but right then, I couldn’t even walk without feeling my way along a wall. I expected Chris to be my caregiver when I was 83, not 33. I couldn’t fathom losing my eyesight. Would I miss seeing my son grow up, would I miss seeing him take his first steps, because my world was going dark?
There are things I thought about myself—or, more accurately, things I thought I knew about myself—that I now realize were false. They weren’t so much lies or half-truths as they were smudges of fact, gray areas that existed between what I knew then and what I know now.
One of those moments happened during the summer of 1993. Back then I wasn’t worried about much more than watching Days of Our Lives, prepping for eighth grade, and keeping my starting spot on my softball team in Dickinson, North Dakota. On practice days, my teammates and I would lean into the prairie winds while our ponytails flapped like pendants behind us. Our T-shirts clung to our bodies, and the infield dirt clogged our noses and throats. I coughed a lot that season, but I napped even more. I was perpetually tired, which I attributed to hard practices and the long summer days you only get that far north.
On the morning of July 8, the air seemed warmer than usual. My bike ride to the field was more tiring. And I was a little loopy. For years, that was my only explanation for what happened next: While we were warming up, the pitcher threw me the ball—and I did nothing. My brain performed the nanosecond calculations that told my hand to meet the ball, but my arm didn’t budge from my side. The ball smacked my nose so hard the impact split open my nostril. My coach drove me home, although she made me ride with my head sticking out of the window so my streaming blood wouldn’t ruin her seats.
At the doctor’s office, the talk was all about whether or not I’d have a visible scar. No one was very surprised that my hand-eye coordination was off. Once a tomboy, by then I’d become a major klutz. Puberty didn’t help. My penchant for acquiring minor nicks and scrapes was so well-established, my parents coined a phrase for it: “mind-tripping,” because my thoughts always seemed to race ahead of my body.
I repeated this story so many times over the years it became part of my personal lore, but if ever there was an early warning that my brain was at odds with my body, that would have been it. MS is rarely diagnosed in children, and the incident may have had nothing to do with my brain’s deterioration. Or it could have had everything to do with it. A year afterward, a doctor noted in my medical file: History of falling and hurting her back. Gave mom the option of physical therapy referral to [get] strengthening exercises for her back.
I’d have two more similar episodes. When I was a sophomore at Smith College in Massachusetts, a friend and I planned a spring break road trip to Florida. We’d close out midterms, hop in her hatchback, and cruise down the coast, splitting driving duties during the 18-hour trek so we could be on the beach by the weekend. I was concluding my hardest academic semester yet with midterms and papers that sapped all the words from my body. Two people very dear to me—including my dad—were battling cancer. Before my friend stuck the key into the ignition, I was spent. I slept through most of the Eastern seaboard and never took over driving responsibilities. By the time we hit Daytona, our friendship was in worse shape than her car—and it’s never recovered. After a lot of sleep, though, I did.
Then in 2005, I was working in book publishing in New York City and newly married to Chris when I started having shooting pains in my head whenever I moved my left eye. When it didn’t improve, I called my OB-GYN because I didn’t have a general practitioner. As I sat on her examining table and explained the pain, I also gushed about getting married and an upcoming vacation, and how I probably just needed a new eyeglass prescription. As I jabbered, her look grew increasingly vacant, until she told me she had to leave the room and collect herself.
When she returned, she relayed her suspicions while fighting tears: This was optic neuritis, which can be the first symptom of multiple sclerosis. Multiple what? I asked, stunned and immediately picturing a wheelchair. If it was MS, she continued, because I was so young it might be a more aggressive form, and she ordered an MRI.
For about two weeks, Chris and I lived under the assumption that I had the disease. The research we did—about daily injections, loss of mobility, depression—scared the hell out of us. But the MRI came and went, and although it showed a few questionable areas, it was inconclusive for MS. Meanwhile, an eye doctor confirmedwhat we wanted to hear: I had an extremely rare instance of a strained eye muscle.
The MRI soon faded into memory. I forgot about MS, too—after all, I’d passed the test. I learned to treat my eye with the same care an athlete gives a sprained ankle: It would probably never be as strong as it once was, so when it started hurting, I knew I needed to slow down and try to relax.
Although I hadn’t fully honed my investigative mind—journalism school was still about a year away—these tidy explanations should have made me dubious. My rosy outlook about my new life and new marriage obscured and buried the truth. I convinced myself I was perfectly healthy. I could still go to graduate school in Colorado. Take on a high-stress career. Hike 13 miles in the high country. Go without sleep. I was strong, young, and driven.
Now I wonder: If I had ferreted out these facts earlier, would it have changed my life path? College. Master’s degree. Journalism. Would I still have done any of those things? What about all the stories I wouldn’t have written, or the people I wouldn’t have met? When I hold my sleeping son at night, I ask myself if I still would have been brave enough to bring him into this world, knowing how difficult it might become for me to give him everything a son should be able to expect from his mom. But when I think about our family disappearing—or even changing—I only feel hollow.
If there was ever a good time to be diagnosed with MS, it was 2013. While I was sick, the U.S. Food and Drug Administration approved an oral drug called Tecfidera. Developed from a material that was used to prevent sofa cushions from rotting, it has been prescribed for decades to treat psoriasis. MS researchers don’t know exactly why Tecfidera works, but it may suppress the immune system in a way that helps prevent or limit exacerbations. It has downsides, of course, including intense stomach cramps and extreme flushing. It can lower white blood cell count, which can, in turn, compromise the immune system. Perhaps most troubling: It costs $55,000 a year, or about $75 per twice-daily pill. (Biogen Idec, which produces the drug, has seen its stock price double since last year.) Fortunately, having health insurance means I pay just $10 per month for it. That will probably change, as insurance plans tend to do. Coupled with ancillary costs—lost wages, babysitters, transportation—MS could become an economic hardship as well as a physical and emotional one.
The Affordable Care Act (ACA) has been a boon to people like me. It ensures I, and others with pre-existing conditions, can switch health carriers without worrying about my application being denied or a new plan being too expensive. The ACA also means people won’t be bound to their current employers over the fear of losing their health insurance. Because of these two changes, much of the current literature about MS care and treatment is already outdated. Not only can I continue to work, but I’ll also have more control over what “work” and “insurance” might look like in two years, or 20. The new medication means that instead of carrying around syringes, I can tuck my daily dose into my jeans pocket. The diagnosis process has also changed: 20 years ago, I would have been dismissed as an exhausted new parent who was overwhelmed by the unfamiliar demands of motherhood. Maybe they would have sent me to a shrink and prescribed antidepressants—while my immune system continued to attack my brain.
I can’t shake that image: that little invaders in my head are chewing away at the myelin in my nervous system. And ironically, as I have been demyelinating, Oliver has been myelinating. Each day, his evolving nervous system adds more myelin around his cells to smooth and speed the transmission of neural messages through his body. As Oliver was learning to roll, trying to sit up, and thinking about crawling, I was slowly losing some of those rudimentary abilities.
During my pregnancy, Oliver was constantly moving inside me. That restlessness continued after he was born, and Chris and I worried about me being alone with him, especially as he started becoming more mobile. Simply rising from the couch to use the bathroom could knock me out for a few hours. I couldn’t pick him up, and regular naps were even more essential for me than for my five-month-old baby. We agonized over schedules, getting live-in care, and whether Chris needed to take a leave from work, too.
Oliver made the decision for us. During my first week of sick leave, which my own fractured memory can barely recall, I remember one recurring scene with exquisite clarity. Whenever I napped, curled into the fetal position, I’d prop Oliver against my stomach and leave some toys within his reach. My Oliver, the baby who couldn’t stay still, would sit quietly, never crying, never fussing. Whenever my eyelids fluttered open, he’d smile at me, then lean his head back and close his sweet brown eyes as if to tell me, Go back to sleep, Mommy.
Sometimes I imagine what my wheelchair might look like. Maybe it’ll be a custom build, like people do for bikes. We’d have to redo our front entrance, bathroom, and hallway. We’d move our bedroom to the main floor. My home life would shrink to a very small footprint. But it’s all doable.
Doable. To a writer, it’s an ugly, boring, corporate word. It’s too short, with too many vowels, and when you say it, it sounds like a wet cloth hitting the floor with a splat. But doable now dictates every day for me—because every day what’s doable for me changes.
The trouble with Tecfidera is that although it helps prevent future outbreaks, it doesn’t repair existing damage. At times, my eyes still hurt, my left leg is wonky, and my fatigue level can be debilitating. Factors such as heat, stress, and lack of sleep can make these old symptoms flare up until I feel like I’m experiencing an attack. A nurse once explained MS to me as being like a construction site. It creates a pothole, and our brains respond by throwing up roadblocks and finding detours, new pathways for neurons to navigate. Over time, more roadblocks arise, which stresses the infrastructure of the brain. Sometimes the roadblocks become too much to overcome—and the body permanently loses that functionality.
Every Friday morning, I take an individual Pilates session to help me determine what’s doable. Some days I’m too weak on my left side to stand on one leg. Other weeks, I’m strong enough to actually work up a sweat. Regardless, the sessions give me 60 minutes to play peacemaker between what my brain says and what my body does.
My struggles aren’t obvious to others, and although you probably wouldn’t realize it by looking at me, I’m disabled. I find it difficult to go out socially. Play dates can become excruciating exercises in chatting with other parents and minding Oliver, all while straining to remain upright through my fatigue. I rarely have more than one drink in public because my symptoms—slurring, lilting—can make me seem drunk when I’m not. I schedule mostly one-on-one get-togethers because I can make it through dinner if I’m focusing on one person; mingling with a group often means I’ll spend the rest of the night on the couch.
Sometimes at work I feel the numbness creeping up my hands and feet. Once, during an editorial staff meeting I was leading, I nearly passed out from the pain in my head. I’m fortunate to work from home a few days a week because without those respites—from the harsh overhead lights, meetings, and noisy distractions—I doubt I could work full time. Disability insurance is an option, but then I couldn’t get paid to write or publish that book I keep dreaming about. I’m simply not ready to stop working because without journalism, I’d lose an essential part of myself that hobbies could never fill.
On long days, I can actually feel and see my body getting worse. When I start to tire, my left index and ring fingers get heavy, and I mistype my C’s, D’s, and S’s. My left leg starts to drag. I slur my words. I start to shield my eyes from light.
But in the midst of this disability, all these things are still doable. The hard part is facing all of it just when I’m also learning how to be a mom. Getting Oliver into his car seat is sometimes so tiring that I buckle him in, slump in the seat next to him, and close my eyes for five minutes. The old Tasha—the person who didn’t know she had MS—would have scoffed at slowing down like that. Now, I see these pauses as a cruel blessing. My disease forces me to halt or rest, but that also means I can sit in the backseat and listen to Oliver singing—mmmm, mmmm, mmmum, mmom! Mom!—as he learns to put sounds together into words. I’m more present now because I’m acutely aware that in five minutes, I may no longer be able to run or jump with him.
Those moments also make me worry that I won’t be there for him and Chris in the future—for hikes and bike rides and graduations—and that my disease will debilitate me so much that I become a burden. As I write that, I can already see Chris denying it. He’d remind me that this is what he signed up for nearly two decades ago, and I know he believes it. That doesn’t mean I have to feel good about it. It doesn’t stop me from worrying about whether we’ll have another child (if I’d even have enough energy to be a mom to two children), or when I’ll get sick again—because there’s no if about it. I obsess over when and how we’ll explain to Oliver what’s wrong with Mommy. I ask myself a very difficult question over and over: My family is everything I ever dreamed it would be, but will I be enough for them?
This past February, I had a follow-up MRI to see how my medication was working. I was battling a cold, and my depleted immune system was exacerbating my symptoms. My step had a weight to it you normally see in people twice my age. I slid into the machine, and as the noise started, I thought about what had changed since I’d last been in this sleek, sterile tube.
After we put Oliver to bed, Chris and I have a new ritual while we make dinner. I’ll lay out what hurts, what feels better, what’s numb. We sort through each one, trying to draw conclusions between symptoms, talking through ways to keep me healthy, and forcing ourselves to stay upbeat. We know MS won’t kill me. I have a good treatment plan. I’m figuring out the elusive life-work balance earlier than most. I’d rather not be sick, of course, but I can’t help but think MS has made me feel luckier, more grateful. I’m also learning how to be selfish and make choices with my heart. To spend genuine, quality time laughing with my family. To focus on the people and the things that make me happier and stronger. To say goodbye to the things—and people—that don’t.
I can finally get Chris laughing again. And Oliver is my best possible audience. He has an almost constant giggle that explodes into shoulder-shaking guffaws at the slightest provocation. In those moments—when my guys are laughing—it’s nearly impossible to think I’m sick. If anything, I feel downright invincible.
I used to run, and now I walk. Someday I may walk with a cane. That won’t change who I am or what I can do—it may just change the way I do it. I’m constantly reminded of that as I watch Oliver learn to walk and jump and run. Those movements are something we all needed to learn at one time. Now, as my son is learning, I’m relearning.
I contemplated all this in February as the MRI logged image after image of my brain and, thankfully, found nothing new. The old lesions—the scars—remain, but my medication seems to be working. After we got the results, we were out for a family walk and once again sorting through the facts about my health. As we talked, Oliver insisted on abandoning his stroller, preferring to make his way on his own two feet. With a bag of Goldfish snacks in hand, he careened down the sidewalk with both hands in the air and his belly button peeking out from beneath the hem of his shirt like a real-life Pooh Bear. I pointed out a dip in the sidewalk to him, to make sure he didn’t trip. It’s the type of thing Chris usually does for me. That’s when Oliver’s hand shot up. For the first time, he was seeking mine for support.
Time slowed once again, and it gave me a chance to glance over at Chris. We were on the same block he and I had paced on the day of my diagnosis. Then, Chris had to hold me up. Now, I was holding our son steady. I could feel the Goldfish crumbs on his sweaty little palms. I could see Chris’ smile. I could feel my toes. And I realized, having those three simple things—or any of them—made me feel strong again. Which meant we were strong again.