How Fibromyalgia Helped This Mama Bear Protect Her Son

Being diagnosed her own invisible condition helped Lindsday Turpen better advocate for her son, Riley, while also making her better at advocating for herself.

Anyone following a typical evening of single mom and full-time student Lindsay Turpen probably wouldn’t see anything out of the ordinary. You’d find 36-year-old Lindsay, who is finishing up a bachelor’s degree at Indiana University in Bloomington, balancing the homework, meals, and housework of her and her son, Riley. Like most twelve-year-olds, Riley is usually more interested in extracurriculars (in his case, Harry Potter Legos) than his math assignments.

Without knowing that Riley was diagnosed with ADHD and autism spectrum disorder (ASD), you might not suspect that the blanket and headphones he immediately drops over his ears when he gets home are a means of recovering from the overstimulation of school. Nor would you guess that when Lindsay plops down beside him on the couch and starts browsing Facebook on her phone, she’s not just recharging from the typical expectations of a mom and student, but also from the added strain of fibromyalgia and chronic fatigue syndrome (FM/CFS).

The fact that both Riley and Lindsay’s conditions aren’t always obvious to an outsider can make it difficult for Lindsay to advocate for her family. This difficulty runs all the way back to Riley’s infancy, when Lindsay had a hard time finding health care providers who believed there was anything there to diagnose.

Before he turned one, Lindsay saw signs that something was off. After learning a couple of words at seven or eight months, Riley stopped speaking completely for months. Then at two, he stopped eating and had inconsolable sobbing fits that would last for hours. “He didn’t want us to touch him, but he didn’t want us to leave,” Lindsay explains.

For years, pediatricians and therapists believed that the unusual behaviors Riley exhibited were simply due to stress. Riley’s dad moved out when he was three and was deployed overseas by the National Guard when Riley was five. At six, the reintegration of Riley’s father into his life caused a new set of issues.

Doctors believed that Riley’s behavioral issues were situational, and if Lindsay were able to normalize Riley’s home life — once his dad returned from deployment or once they had established a regular visitation schedule — that Riley’s issues would resolve themselves.

“It got to a point where it was like, this is not just stress. There’s something else going on here,” Lindsay remembers thinking. “I had this gut feeling there was more to it, I just couldn’t put my finger on it.”

“It got to a point where it was like, this is not just stress… I had this gut feeling there was more to it, I just couldn’t put my finger on it.”

However, she didn’t suspect Riley was on the spectrum because he was an extremely social kid. What Lindsay understood about autism, she learned from relating to a cousin with Asperger’s — a disorder characterized by difficulties in social interactions. In comparison, Riley didn’t display the abnormal social cues, such as poor eye contact, that Lindsay knew to look for.

When arose at school at age six, Lindsay took Riley to a child behavioral therapist, who in turn recommended a child psychiatrist.  Right around his seventh birthday, the psychiatrist placed him on the spectrum. Autism spectrum disorder is a group of developmental disorders that covers a wide “spectrum” of symptoms, skills, and disability levels. People diagnosed with a disorder within the group may be more or less debilitated by their condition; it may also be more or less noticeable to others.

“He’s on a part of the spectrum where he doesn’t have the severe needs that would be obvious to other people,” Lindsay explains. “Riley lives in this gray area where he needs more handholding, more accommodations, more of a learning curve than a typical child his age, but he’s not so developmentally delayed that he qualifies for a lot of the more in-depth services or anything that seems obvious to other people.”

This gray area means Riley doesn’t always get the help he needs. In Indiana, an official medical diagnosis does not automatically qualify a child for social services. The public school system conducts their own assessment and, in Riley’s case, they decided he didn’t qualify for additional services.

“Anytime he was having behavioral issues, they just punished him rather than working with us. We got to the point where they were threatening to suspend or expel him from the public school here because, according to their assessment, he was not autistic.”

Lindsay faced similar disbelief from specialists about her own condition, which started out as a minor ache in her left shoulder in early 2014. The pain spread through her shoulders and down her arms until she felt a general achiness throughout her body. She started having trouble lifting her arms and lost her usual reserve of energy, getting more and more behind in classwork. For months, she sought help, but couldn’t find a health care provider who believed her.

“The first three doctors I went to about this just told me to try harder to lose weight,” Lindsay recalls. “I even had an endocrinologist refuse to see me. He was in the same practice group as one of the other doctors I had seen. When they went to transfer the records, I guess there was some conversation, and he was like, ‘Oh I’m not taking a patient like that. Just tell her to lose weight.’”

While Lindsay was overweight, she knew her symptoms were pointing to something much more complex than just her body mass index. It was through advocating for her son that Lindsay learned how to advocate for herself.

“Before I had Riley, I tended to just ‘go along’ with whatever I was told by medical professionals. Once I had Riley to advocate for, that ‘momma bear’ instinct kicked in. I began to understand what it meant to trust my gut instinct when a diagnosis or suggested treatment didn’t feel right. After years of advocating for Riley, it seemed second nature to me to seek out different opinions or resources when something wasn’t working for me or when a doctor blew me off.”

“Before I had Riley, I tended to just ‘go along’ with whatever I was told by medical professionals. Once I had Riley to advocate for, that ‘momma bear’ instinct kicked in.”

Eventually Lindsay found a physician who believed there was something wrong and, after a series of MRIs and blood tests, Lindsay was diagnosed with FM/CFS.

Although being a single mom with chronic pain and fatigue is difficult, Lindsay has found an unexpected benefit to it: a new way to relate to her son.

When Lindsay first started exhibiting signs of her condition, the worst part for her was the brain fog. She lost much of her attention span and short-term memory. She started carrying around a notebook, even when moving around the house, because she couldn’t remember what she was doing.

“That’s when it started to dawn on me how difficult it must be to have a different kind of brain,” she explains. “And I thought, ‘Oh my God this must be what Riley’s life is like.’”

The more she forgot to do things like read assignments for class, fill prescriptions, or call teachers, the more she empathized with her son’s inability to stay on track or to understand what someone is expecting of him.

Riley and dinosaur pal on a recent flight to Denver.

“You start living in this place where it’s like, what am I forgetting? And what’s the next thing that’s going to be bad or wrong or that I’ll get in trouble for?” she says. “I related to that as Riley walking around never knowing when he was going to be in trouble again because he couldn’t remember to do something.”

While Riley has above average visual and spatial awareness, he has a delayed processing speed, which means it can take longer for his brain to respond to and interpret an external impulse, such as someone talking to him. Sometimes when Lindsay looks Riley in the eye and asks him to do something, he’ll just blink at her.

Before her own health problems, even though she logically understood the symptoms of Riley’s conditions, it could be hard sometimes to not just see a normal kid avoiding his chores or homework. But after feeling the processing delay in her own brain, she has learned to repeat herself instead of jumping to the opinion that he’s ignoring her. And when she does get frustrated, she’s quicker to tell him it’s not his fault and that he’s not in trouble.

Both through her own experiences, as well as the growing resources available about autism and ADHD, Lindsay understands part of what Riley goes through — for that she is grateful. What she struggles the most with now is guilt. “I worry if I’m doing enough for him. I feel guilty when I have to ask for help for myself.”

This guilt comes from the burden of needing to assure others they’re not “faking it,“ as Lindsay puts it. She explains, “I constantly worry whether people — be they Riley’s providers or my professors — will believe what I’m telling them because our challenges are invisible.”

“I constantly worry whether people — be they Riley’s providers or my professors — will believe what I’m telling them because our challenges are invisible.”

At twelve, Riley has mostly caught up developmentally, but he still has behavioral issues that impact him in social situations, such as school. He struggles with impulse control, like speaking at inappropriate times, and has a hard time understanding personal space. “He just doesn’t realize how close he is to somebody … because he just doesn’t have the kind of appropriate perception that a neurotypical kid would have,” Lindsay says.

Similarly, Lindsay is getting better at managing both her pain and energy, but can’t always maintain the demanding workload of her classes. When she gets behind, some professors are willing to work with her and some aren’t. She has learned to ask for other’s advice rather than simply explaining her situation and hoping for understanding. She takes this approach, “so that nobody feels like I’m stepping on toes, but it’s a very fine line sometimes.”

Lindsay explains that when people work with them, her advocacy is always worthwhile. “When I see a light go on for Riley, when he brings home a good grade, or I am able to turn in work I’m proud of because I was granted that extension, it’s all worth it. I know my son is bright, and I know what I’m capable of, so it’s very satisfying when we get the chance to prove it.”

Lindsay advises other parents facing skeptical authority figures to trust their instincts. You’ll know when something isn’t right with your own body or with your kid, she explains. “You have to push for yourself, and you have to push for your child. I think you know if your child is different. And there’s nothing wrong with a child who is different, but you have to know how to help them. Those children can be just as successful.”


The Memory Queen

When Alzheimer's took my grandfather's memory, I started writing a fairy tale to make sense of our loss. But dementia cannot be defeated like a fairy tale queen.

Down the street from my grandparents’ condo in Hawaii, there used to be a nightclub with a cardboard-looking mural in front of it, depicting a woman snorkeling.

My family and I used to joke that the woman was my grandma. There was something about their similar stern, narrowed eyes, head of dark hair, and flawless light skin, despite the Oahu heat, that made the snorkeler’s face familiar. I had never seen my grandma swimming, and I had never so much as seen my grandpa in a pair of swimming trunks. But that mural was still a significant landmark, probably because trips to my grandparents’ place at that very young age usually meant that we would take a swim in their pool.

If we went to visit on a Sunday, we would shower upstairs in my grandparents’ apartment before going to our almost weekly family dinners at the restaurant of my grandparents’ choosing. Half-naked and ducking my mother’s attempts to approach me with a hairdryer, I would admire family pictures around the condo: official cruise photos in their glossy paper frames, posed family portraits, and school pictures of my sisters and me. There were almost always snacks around, which my grandparents offered constantly, despite our pending dinner, and my grandpa would often encourage me to change the television channel in the living room to something I would rather watch, even when a football game was on.

[My grandfather] loved us, he loved listening to everyone catching up, he loved my grandma. I felt privileged to have a seat at their table.

Then we would drive over to a Chinese restaurant or Japanese diner or the occasional steakhouse. With my grandparents forming the center of gravity, we would all pack into a large booth together, leaning in as they told us stories about their travels. They had a whole routine down with my grandma often enthusiastically beginning a story and my grandpa nodding in agreement beside her: a transatlantic cruise, a tour of Europe, a visit to Japan to see the cherry blossoms. One anecdote, in particular, shattered my preteen heart into a million pieces: one time, on a return flight to Hawaii, they were bumped to first-class, and found themselves sitting next to Justin Timberlake, Lance Bass, and the other members of NYSNC. As they regaled us with stories, waiters would stop by, asking for gambling tips my grandparents had picked up on their latest trip to Vegas.

Together, the two were the life of the party: my grandmother, always joking, commanding the room, a masterful raconteur; and my grandpa, her perfect complement, beaming by her side, giggling after her every punchline as though it was the first time he had ever heard it. My grandpa especially seemed to love these dinners, joyfully taking in the company of our family. He loved us, he loved listening to everyone catching up, he loved my grandma. I felt privileged to have a seat at their table.

When I finished sixth grade, my family moved from Hawaii to the suburbs of Georgia, but Oahu was always my home. In the summer months, we would return to the house where I grew up, complete with its shag carpet and ’50s flair, and resume our Hawaii lives: taking summer classes, hanging out at the mall with friends, and–most importantly of all–resuming family dinners.

Even when I left for college, I would still come back to visit whenever I could, staying with my grandparents in their condo. During the days, I would shadow my grandparents as they went about their days: watching The Price is Right with my grandfather, or watching my grandma make travel arrangements on her iPad.

In hindsight, I wonder if the midnight encounter might have been one of the first warning signs.

I was in my early 20s, and my grandparents usually let me do my own thing. One night, sneaking back into the house 2am after an evening out clubbing with my friends, I heard a rustling behind me as I took my heels off in the dark. It was my grandpa. Illuminated solely by the light leaking down the hall, he had appeared out of nowhere. My heart jumped guiltily in my chest as we studied one another. Then, I saw the bowl of Frosted Flakes in his hand.

“Want some?” he asked.

My grandparents are cool as shit, I thought to myself at the time. But in hindsight, I wonder if the midnight encounter might have been one of the first warning signs.

Long before we had a name for it–Alzheimer’s–we knew something was amiss with my grandpa.

We’d find him pacing around the apartment, moving things from one room to the next. Or we’d find him standing at the kitchen sink, washing a single spoon over and over again, which may not have even been dirty when he picked it up.

When I came to visit, Grandpa would hug me, but I could tell he didn’t know my name, or even what our relationship was.

For the most part, he was agreeable. He could pass as normal in large social situations, laughing when everyone else did, and fawning over my grandma. But if you watched him, you could see the subtle clues. He wouldn’t eat so much as push food around his plate, or offer it to others, claiming he was full despite having never taken a bite.

An old family friend said that my grandpa’s agreeable nature in the face of Alzheimer’s was a testament to what a good person he was before he was diagnosed. I appreciate the sentiment, but it always filled me with more questions. Who was he now? And what did that mean about the time we spent together? Did it mean anything at all?

Long before we had a name for it–Alzheimer’s–we knew something was amiss with my grandpa.

One summer night, my grandma gathered the relatives for dinner at a hotpot restaurant while I was in town. It felt just like it did when I was a kid. Everyone was talking loudly, telling stories about their travels. People asked me how New York was, where I’d been living for a few years, while we all cooked raw vegetables and meat slice in boiling pots of broth.

That was when my grandpa, who had been to this place before, picked up an uncooked noodle, took a bite of it, and frowned. “I don’t think I like the food here,” he said. I smiled reassuringly and showed him how to cook his noodle in the broth; no one else had noticed.

Afterwards, I couldn’t help but keep a close eye on him. I noticed my grandpa was looking through the faces of the people at the table, out of our private room. I tried to follow his gaze, but I couldn’t; I simply couldn’t understand what he was looking at.

Being so physically close to him but unable to connect was heartbreaking. I wondered if my grandpa felt that same sadness. Maybe in some ways, this is harder for us than it is for him, I thought to myself. If he can’t even remember, maybe he doesn’t understand what he’s lost.

When I got back to New York, I started writing to sort out my feelings.

The piece that started to take shape was a play. Not specifically about my grandpa, but a grandpa who suffered memory loss. It wasn’t Alzheimer’s, though. His memories were being stolen from him. There was an evil queen named Dementia, siphoning memories from David, the grandpa in the play who shared the same name as my own. And there was Mia, an estranged seven-year-old granddaughter, hell-bent on protecting David by collecting items of power from around her grandparents’ house to finally defeat the queen.

She wondered what it was like to lose all of your memories. She wanted to know how painful it would be

Mia asked all the questions I wanted to ask. She wondered what it was like to lose all of your memories. She wanted to know how painful it would be. Most of all, she wanted to know how to connect with someone she loved when he may not even know who she was.

As my trips to Hawaii became less frequent, my time there became more precious. I started spending less time with friends, and instead focused on my grandparents.

Suddenly, little moments felt very important. One afternoon, my grandma took us out for shave ice. My grandpa had a big sweet tooth, and we took our plastic cups back to the van and ate them in the car. We rolled down the windows, and my grandpa reclined his seat. I sat there, feeling the warm breeze on my face, as my grandpa finished his frosted rainbow cup, then closed his eyes for a short nap. Everyone was happy, and silent, and I couldn’t help but smile between bites.

But as much as I enjoyed these moments, I also felt an obligation to memorialize them. I tried to memorize every line of that moment–the incline of my grandpa’s seat, the expression on my grandma’s face, the exact patterns in each cup’s rainbow ice–so that the memory wouldn’t be lost in my mind, as it would be in my grandfather’s. There was an added layer of consciousness in our time, an awareness that every memory must be stockpiled for a time when I would need them for comfort.

I tried to memorize every line of that moment… so that the memory wouldn’t be lost in my mind, as it would be in my grandfather’s.

One day, my grandpa asked me if we could go for a swim together in the pool downstairs. In all our time together, he had never once shown any interest in swimming, but this time, he changed into his trunks and followed me out the door. I felt so goddamn grateful as I watched him float and bob around the water. At this point in his battle against Alzheimer’s, he sometimes wouldn’t even know who I was, yet here we were, sharing a rare moment together.

My next visit, my grandpa overheard my grandma mention I was on my way down to the pool. He perked up.

“We’ll go for a swim?” he asked, making little freestyle motions with his hands.

“Let her go, David,” my grandma said, mentioning it was time for a nap.

I went downstairs by myself, assuming he would sleep and forget the whole exchange. When I returned upstairs, however, he smiled at me.

“Swim?” he asked.

I wanted to throw up. Of all the things he remembered of our time together, that swim we had taken was one of them, and I had just shrugged off an opportunity to create another special moment we could have shared. I’d never get that opportunity back; we never ended up going swimming together again.

My play had a professional reading at the New Ohio Theatre in New York in 2013.

It was produced and directed by a coworker at the bookstore where I worked, and he assembled a top-notch cast for the occasion. I had a whole slew of professional actors at my disposal, one of which was on Broadway in Newsies, but one of my favorite people involved was the child actress playing Mia, who seemed fearless. My mom flew in for the big reading. She had never seen any of my plays, so it was a special occasion. I also had about 30 friends and colleagues in the audience, hearing my most personal work read out loud.

When the show was over, I received a lot of congratulations from the cast, crew, and audience. My mom really enjoyed seeing the process of a performance getting up on its feet. Some of my friends admitted to tearing up during the show.

But in the days that followed, I found myself getting a lot of feedback from colleagues. One note, in particular, came up consistently: Is this a kid’s show, or an adult’s show?

Mia conquered the fairy tale evil, but the very real consequences of Alzheimer’s persisted.

I was surprised. Despite the fairy tale plot, I’d never seen the play as being for kids. I saw Mia’s journey as an idealistic take on a disease that makes idealism impossible. It represented my hope that things maybe could get better, that there is something–anything–productive to do in the face of Alzheimer’s senseless loss.

The climax of the play occurs when Mia has collected all the items needed to defeat Queen Dementia. By recalling her favorite memories of her grandfather with these totems in hand, she is able to vanquish the Queen, and reclaim the key to the box where Dementia has hidden all of David’s memories. It rests on the family mantle, but when Mia reaches for it, David enters the room, startling it out of her hands to break open on the floor.

For a fleeting moment after the box breaks, David looks at Mia. There’s a flicker of recognition. But then Mia’s mom and Grandma come running into the room. The recognition is gone. Mia conquered the fairy tale evil, but the very real consequences of Alzheimer’s persisted.

Reality came crashing down with the locked box. All Mia’s hard work had culminated in a moment of clarity, but it had opened like a wound–pulsing and bright–and then healed over in the blink of an eye.

The news of my grandpa’s passing came quickly.

My grandparents were supposed to meet my parents in Vegas, but right before the trip, my grandpa was suddenly admitted into a hospice, By that weekend, he was gone. Spending the weekend with my boyfriend’s family for a barbecue, I remember crying outside a New Jersey Chili’s upon hearing the news. At the barbecue itself, I separated myself from the crowds, walked down the street to the boardwalk by the house, and wailed out my grief into the reeds lining the water, hugging myself as I did to keep myself together.

I had no illusions about how my grandpa’s life would end. I had been preparing myself for years for that call, stocking up my vault of memories. But as I gasped for air in the night, I realized that there had been part of me still believed the fairytale: that it was possible to vanquish Queen Dementia, and that I would be able to see Grandpa one more time, as he had been, if just for a minute.

I flew out for the funeral. With my work schedule and flights, I ended up in Hawaii for about 36 hours.

My mom and sisters and I stayed at an AirBnB within a few minutes of my grandparent’s condo which was so cramped, I had trouble sleeping. In the dark, I thought about that nightclub mural of my ‘Grandma’ snorkeling, and how the last time I saw it, they’d physically torn her out of it; only the ocean and fishes remained around the snorkeler-shaped gap. She was gone, but the absence of her was palpable. My grandpa, my childhood memories of going to the pool, that mural– everything was subject to change and loss. And I was the sea, feeling the gaps left by the things time had stolen from me.

At the funeral, I was given the task of handing out programs. On the outside was a photo of him smiling next to a giant spiral-cut, fried potato. It was a perfect choice–an image of the joy my grandpa got from the simplest things.

My grandpa, my childhood memories of going to the pool, that mural– everything was subject to change and loss.

The funeral itself was short but sweet. They played Taps on a bugle along with a military flag presentation, which I knew my grandpa would have loved. It reminded me of how, when my grandparents visited me in New York, he would grunt in appreciation during the pauses between lyrics in Broadway shows.

After the funeral, we all went to a Chinese restaurant for dim sum. There were faces there I hadn’t seen since my childhood.

When we walked in, my grandma was giving the waiters instructions, rearranging tables to make sure everyone was accommodated. Amidst the pinging of teacups, clinking of silverware, and whirring of Lazy Susans, people shared stories about my grandpa, and talked about things about him they’d miss.

But even there, life was moving on. At one point, during a talk about the latest movie releases, my Grandma perked up. “What’s Sausage Party?” she asked.

The table erupted in laughter.

I suddenly felt very thankful. We all missed my grandpa, and that loss will never go away. But the family will live on. Here, with all these people who loved and remembered him, something opened up, bright and pulsing. For a moment, even without him there, I was home again.

Creative Commons photo from Debs on Flickr.

Health & Fitness

Catching Big Air at the Olympics

After being diagnosed with Rheumatoid Arthritis three weeks before the 2014 Winter Olympics in Sochi, snowboarder Spencer O’Brien is ready for her Olympic do-over.

Spencer O’Brien wants an Olympic do-over. When the then 26-year old Vancouver-resident finished 12th in the women’s snowboard slopestyle at the 2014 Sochi Games, she was devastated. She cried and, as a medal favorite, felt like she let Canada down.

But it was a miracle that O’Brien even suited up to compete in Russia. What most people didn’t know was she was diagnosed with Rheumatoid Arthritis in late November 2013, just three months before the Olympics.

Her mysterious symptoms surfaced in the fall of 2012, right before the start of Olympic qualification year. They began with mild aches and pains, mostly in her knees and shoulders. She assumed that the pain and swollen, stiff joints were a byproduct of age and the wear-and-tear of her sport’s high-impact demands. She planned to take the spring and summer off to have wrist surgery and focus on getting healthy for the Olympics. But she couldn’t shake the discomfort.

O’Brien struggled to figure out what was happening to her body. Her tests came back negative. Doctors thought she had bursitis in her shoulder and gave her cortisone shots to treat the joint pain. “I went through a solid year of strange joint injuries and pain,” she says. “We assumed all the injuries were unrelated. But I knew in my heart that I was sick.” Eventually, she couldn’t get out of bed in the morning or walk down the stairs without bracing herself against the wall and railing, gingerly placing her feet one at a time on each step.

“I went through a solid year of strange joint injuries and pain,” she says. “We assumed all the injuries were unrelated. But I knew in my heart that I was sick.”

She was frustrated. “As an athlete, we work in timelines when it comes to injuries. If you break a bone or tear a ligament, it’s a set amount of time until you are back doing what you love. With these injuries, there was no timeline. Even though I was so dedicated to my rehab and doing everything that was asked of me, my health was getting worse,” she says. “It felt like I was being punished for something. I couldn’t understand what I was doing wrong, why I was in so much pain, and why I wasn’t getting better.”

Aspen, CO – January 29, 2016 – Buttermilk Mountain: Spencer O’Brien competing in Women’s Snowboard SlopeStyle Final during X Games Aspen 2016 (Photo by Peter Morning / ESPN Images)

A Rising Star

O’Brien grew up in the mountains of British Columbia. At the age of three, she learned to ski and took up snowboarding when she was 11, following in her older sister’s footsteps. She fell in love with slopestyle, where athletes ride down a course and perform tricks off of obstacles like jumps and rails. “I feel like I can express myself and my riding when I’m on a slopestyle course. I love the creativity of it,” she says. O’Brien set her sights on snowboarding professionally and competing in the X Games and at 17, she turned pro.

As the 2014 Olympics approached, O’Brien was riding high. She won medals in slopestyle at the Winter X Games in 2008, 2009, 2012 and 2013. She won gold 2013 at the first FIS World Championship.

“I feel like I can express myself and my riding when I’m on a slopestyle course. I love the creativity of it.”

But then, her body betrayed her and she was forced to stay off the snow for seven months. “To be in that position three months from the Olympic Games—it was heartbreaking because there was no way I could see myself being there doing something I loved to the best of my abilities,” she says.

Finally, A Diagnosis

In November 2013, doctors told O’Brien she had rheumatoid arthritis (RA), an autoimmune disorder where the immune system attacks the lining that surrounds the joints. The inflammation can cause painful swelling, stiff joints and fatigue. Ultimately, it can lead to erosion of the bone and cartilage—not exactly the ideal conditions for a world-class athlete.

Plus, at 25, O’Brien wasn’t the typical RA patient. While RA is more common in women, symptoms typically begin between the ages of 30 and 60, according to the Arthritis Foundation.

Still, her diagnosis was a relief. Finally, the snowboarder had an answer. The first day on medication, O’Brien says she felt normal again. “There was a light at the end of this super long, dark tunnel. Once you have that, the whole world opens up again,” she says.

She had a short window to get ready for the Sochi Games. However, she had to ease back into snowboarding slowly. She was also diagnosed with severe anemia, making a return to altitude tricky. On O’Brien’s first day back on the mountain, she did one run. The next day, she did two runs.

After a week or two, her symptoms returned. “That was a really frightening day because you find this relief and all of a sudden it’s gone,” she says. Doctors prescribed different medication to help her compete in Sochi, where she continued to struggle with pain and find the right treatment for her.

There was a light at the end of this super long, dark tunnel. Once you have that, the whole world opens up again

The Road Back

O’Brien doesn’t feel limited by her disease and believes that her experience has made her stronger as an athlete and a person. She also doesn’t let her condition stop her from competing at the highest levels of her sport.

“It changes your life to be diagnosed with a disease that deteriorates your body. The first thing I thought was, ‘How am I going to ever do my sport again?’” she says. “But you’re still capable of doing whatever you want. You work hard, advocate for your health and push for the way you want to live.”

After the 2014 Olympics, O’Brien and her doctors continue to search for the right medication to handle her symptoms. In all, it took about a year and a half of trial and error. Despite dealing with on-going pain, she went on to win a bronze medal at the 2014 X Games and the gold medal at the 2016 X Games, her sixth career X Games medal.

Now, she’s back at the top of her game and is hungry to have the Olympic experience of her dreams in Pyeongchang as part of Team Canada. In addition to her medication and work on the mountain, she focuses on strength training and mobility. She also does her best to stick to a diet low in inflammatory foods.

“It’s nice to feel my age and not like I’m 80,” she says. “It’s a true gift to go to the Games again in a healthy and happy place. I feel like I’ve been given another shot and I want to take everything I learned from my experience last time and channel it into not only performing my best, but also enjoying the experience.”

Top photo by Peter Morning.


What A Dismissive Doctor Taught Me About Listening To My Instincts

Sometimes, your inner voice is your best medical advocate. So pay attention to it: it could just save your life.

I was 19 years old, 700 miles from home, and it hurt to breathe. I first noticed the pain as I walked across campus one evening in early April. A rainbow stretched across the sky and a warm breeze caressed my cheeks. I was too enraptured by the Pennsylvania spring, full of flowers and void of the mud that Maine Aprils are known for, to pay attention to a little thing like chest pain.

After a few days though, the pain remained. I would attempt one of those deep, refreshing breaths that fills your lungs and clears your mind, but each time a sharp pain stopped me. It wasn’t constant, but it was persistent enough to make me, a typically stoic individual, mention it to a friend as we sat side-by-side in the computer lab one night.

“What does it mean when it hurts to breathe?” I asked, as though a fellow teenager would know the answer.

Surprisingly, he did. “You probably have gas,” he told me with the confidence of a medical doctor.

“You probably have gas,” he told me with the confidence of a medical doctor.

As the youngest of four girls, I was not used to discussing such embarrassing bodily functions with members of the opposite sex. If I’d known that 17 years later, with two boys of my own, gas and excrement would be regular topics of conversation, I may have felt comfortable enough to go into more detail with my friend. Since I was not yet privy to that information, though, I dropped the subject.

After a full week of off-and-on pain, I decided to visit the college clinic. A nurse checked my vitals, listened to my lungs, and informed me that she could not find anything wrong with me. Perhaps it was just gas. Maybe I’d been holding it in for so long that it had built up to an unhealthy level.

By late afternoon though, it was clear to me that something was truly wrong. I couldn’t climb a set of stairs without excruciating pain. Any movement that required me to turn my core left me doubled over. So I did what any teenager would do in that situation. I called my mom.

Of course, she knew just from the sound of my voice that I was not okay. I was a healthy kid, but even when I was sick, I wasn’t given to tears and drama. She talked to me, then to my roommate, and told us both to go to the Emergency Room. We recruited a friend to take us, and on our drive, he regaled us with the tale of the time he went to the ER for appendicitis and it turned out to be, you guessed it, gas.

So I did what any teenager would do in that situation. I called my mom.

It took four hours of sitting in the waiting room before I was ushered into an exam room that doubled as a supply closet. My roommate was allowed to join me and we nervously joked about how maybe I’d let out a big fart and we could go back to the dorms.

When the doctor arrived, he was terse. After an initial workup, he informed me that I probably had a minor muscle strain and he gave me a muscle relaxer to alleviate any spasms. I don’t know what persuaded him to order further tests. In my mind’s eye, he saw me as a silly college girl, wasting his time and taking him away from the more pressing medical needs of other patients. Even so, he ordered an EKG and a chest x-ray.

I’ll forever be thankful that despite thinking I was overreacting, my doctor was still thorough. As I was wheeled from the radiology department after my x-ray, the tech told me, “I can’t definitively tell you this, but the doctor will probably say that your lung has collapsed.”

Sure enough, as I laid on a gurney in the emergency department hallway, the doctor approached, suddenly kind, unhurried, fatherly. He perched himself on the edge of the mattress and placed a reassuring hand on my leg.

I took the news the way any teenage girl would: By silently thanking God that it wasn’t gas….

“Your right lung is about 80% collapsed,” he told me. “We’re going to get you into a room and you’ll have a chest tube inserted to re-inflate it.”

I took the news the way any teenage girl would: By silently thanking God that it wasn’t gas, then triumphantly thinking, “Ha! None of you believed me, but I knew something was wrong with me!”

The next three weeks passed in a flurry of hospital stays, doctor’s visits, surgery, and finally freedom. I made a quick and full recovery, and although the surgeon discovered scar tissue on my lungs, we never did learn how it got there or why it tore to cause the pneumothorax. Perhaps we’ll never know.

It’s been 17 years since that ordeal and it’s forever shaped the way I listen to my own instincts. I still don’t run to the doctor at the first sign of pain, but I pay attention to the signals my body sends me, and when they persist, I do something about them.

The experience has also shaped the way I pay attention to my children’s pain. Much like my own mother, or any mother for that matter, I know my kids well enough to differentiate between a cry for sympathy and a cry from real pain, but I try to listen to the subtler signs too; the quiet part of me that whispers when something isn’t quite right.

When I choose to listen, my inner voice is often right.

I don’t always hear it. Sometimes I miss the signs of an ear infection or make one of the kids go to school with a cold that later turns into a fever. When I choose to listen though, my inner voice is often right. Like when I insisted on near weekly pediatrician appointments until my six-month-old finally got diagnosed with multiple food allergies. Or when I knew not to write off intermittent vomiting as a stomach bug and we learned that my child had an impacted colon.

I have plenty of moments of self-doubt, and I’m sometimes convinced to write off symptoms as ‘no big deal.’ But I’ve also been gifted with an experience that reminds me that when I’m tempted to ignore my instincts, sometimes a bad case of gas is actually a collapsed lung.

Creative Commons image by Adrian Berg.


No More Monkey Bars: A 13-Year-Old’s EDS Story

Being different doesn't mean that you're alone.

A couple weeks ago, we received an email from Louis DeLauro, a middle school teacher at the Grey Nun Academy in Yardley, Pennsylvania. He wrote:

“Isabella Yim is 13 years old and is a star in my Language Arts Classroom. All of us found her personal EDS story very moving. In her story, she clearly articulates how important it is for children who feel isolated to hear stories about others living with the same challenges…  I have a story in Chicken Soup for the Soul and quite frankly Isabella’s story is better than my own. Please consider it for publication.”

After reading it, we agree: Kitty is very talented. This is a powerful, beautifully written story about learning to come to terms with a chronic condition. With the permission of Isabella’s mother, Folks is extremely proud to publish it.

Finding out something about yourself that you did not know before is terrifying. Especially if it is a disease. One that you can not get rid of and have to live with for the rest of your life.

The hardest thing I ever had to learn about myself was that I had EDS (Hypermobile Ehlers Danlos). It was horrifying for a little girl to hear the words: “You can not play on the monkey bars anymore.” I remember it like it was yesterday, having so much of my childhood ripped away and replaced with something else. I hate that memory.

Isabella ‘Kitty’ Yim

When I found out I had EDS, I was only seven years old. I was at the doctor’s office. I remember getting pricked and poked with needles and other weird tools, and then the doctor saying some really big words to my mom. I was so confused. Why was no one telling me anything? What does that chart mean? What is going on? Questions fluttered around my brain as the doctor spit large words that I was too young to understand.

Then before I knew it, my mom held my hand and we walked back to the car. We drove and drove until finally, we were home. I was still confused.

We walked in and she sat me down in her room on her bed. She explained slowly. “You have EDS.”

I asked, “What is that?”

“It’s a disease,” she responded.

I did not know much about things like diseases, but what I did know was that diseases equaled gross. I had the picture in my mind that I had some infectious disease that was going to kill me and infect everything I touched.

Turns out that is not what EDS is.

My mom told me:”EDS is something that affects your joints and your blood.”


“Your joints are loose and will dislocate easily. Your blood vessels are like a balloon, they need a lot of water. Most people have blood vessels like a hose. They fill up slightly but don’t expand a lot.”

I stopped asking questions after that. I was sad. I didn’t want to be different from my friends.

Isabella being comforted by a friend after finding out she had EDS.

I have a memory of when I was nine. I asked my mom: “When will I be cured?” She then explained that EDS is not something you can cure. It is like the color of your skin: you can slightly alter it but never fully change it.

I choked up. “Why, why isn’t there a cure?” I said. “Why would God give me this disease?”

“Because God knew you could handle it,” my mom replied.

I then proceeded to cry. That didn’t comfort me. I still hoped and prayed for a cure. I just did not understand why this burden was placed upon me.

I felt that way until I turned eleven.

One day, I was scanning YouTube and found a video: 26-year-old model wears her wrinkles with pride. Interested in the title I clicked on it. It was a short five-minute documentary.

As I watched it, I realized that the model had EDS. I rewatched the documentary again. I had never seen anyone with EDS who was famous. I’d never even really realized there were other people with EDS like me. I then typed ‘EDS’ into Google. What came up amazed me. Thousands of people with their stories of EDS sharing them for people like me. Titles like: “EDS the Invisible Disease” and “My EDS Story.”

My disease was not a burden. It was an inspiration.

That was the day I realized EDS was nothing to be ashamed of. For so many other people with EDS, their condition became something they embraced. If they could do it, so could I. My disease was not a burden. It was an inspiration.

Once I realized that life got a little better for me. I still believe EDS is not a burden. I now co-exist with it. I am living my life happily. And  I am no longer alone.


The Dark Side of Facebook Support Groups

I joined a Facebook group to help me cope with my husband's cancer diagnosis; instead, I was told to divorce him. Good Facebook groups are out there, but you have to know what to look for.

Last year, a woman who didn’t know me told me to leave my husband. And so did a large handful of her friends. My husband hadn’t done anything wrong to warrant that response, except be sick, and neither did I—all I’d done was ask for help. In a Facebook group specifically designed to help people.

Earlier that month, the two of us sat in a neurosurgeon’s office, watching a team of doctors go through his MRI results and point out anomalies. Roughly translated, their whole spiel added up to this: “You have two brain tumors and we can’t do anything about it. Sorry, pal. Come back in six months for another MRI.”

We spent the rest of the day mostly in silence, trying to process what the doctors said. The next week, I hunted for resources and found a Facebook group dedicated to supporting spouses of people diagnosed with brain tumors.

I was completely pumped to make my first post. I thought the group would be good for me—I’d have a place to chat with people in the know about coping strategies, learn how best to minimize any negative impact on my husband’s health during our daily activities, and have a place to share my frustrations if needed. Full of a perhaps naïve but genuine excitement, I posted, explaining our situation (“My husband was recently diagnosed, and now we’re in a wait-and-see period of MRIs every six months.”) and asking for help (“What can I do to make this easier for him and be sure I’m not triggering any anxiety or depression when we talk about it?”).

And then that woman told me to leave my husband.

I was disgusted that so many wives were advocating for me to abandon my husband, when all I wanted was to both help him.

Her spouse apparently was in a wait-and-see period too. His diagnosis was all he ever thought about, and it was making her life hell, she said, because they never did anything fun anymore and lived in a black hole of brain tumor depression. She wished she had the money to divorce him. Well, I explained, I’m sorry about her issues, but I’m not looking to leave my husband—I just want advice on how to be the best support for him I can be.

She didn’t respond again, but it appeared that her willingness to bring in so much negativity sparked something in the other women in the group. I opened Facebook the next day to a flood of comments agreeing with her. These spouses told me it wasn’t worth it to stay, it’s more work than I could imagine, and don’t I want to move on to something else: that fairytale marriage with no problems that so many people dream of? I’d never get it if I stayed with him.

I was disgusted that so many wives were advocating for me to abandon my husband, when all I wanted was to both help him and find support of my own.

Meanwhile, my husband’s diagnosis expanded to include hyperacusis and tinnitus, which may or may not be caused by the tumors; we still don’t know. Relatively little research has been done on hyperacusis, which causes physical pain at certain sounds, volumes, and wavelengths. This was new territory for both of us. I decided I’d try another Facebook support group, just in case the first one was a weird vortex of negativity.

It wasn’t. I saw the same terrible advice coming from people in the new group.

One said her spouse’s hyperacusis was so bad that she couldn’t do anything but sit quietly on the couch, a virtual prisoner in her own home. She’d started an affair as some sort of warped coping strategy. Others chimed in, saying yes, if you can’t deal, just move on. I stared at the computer, mouth gaping, becoming angrier and angrier by the minute. It’s like a drug, that anger; one person in the group lets it out and it sweeps through everyone regardless of the reason they’re in the group to begin with. These women were angry about their spouses’ conditions, which in turn made me angry at their callousness toward it. It’s a vicious cycle.

These women were angry about their spouses’ conditions, which in turn made me angry at their callousness…

Around the same time, I was in a tiny argument with a friend of mine. Her sister recently became engaged to a wonderful man diagnosed with a terminal disease. My friend told me she would have left him. It was her life too, she said, and she didn’t want to waste her life on something like that.

I told her exactly what I told the women in the brain tumor group: My husband’s diagnosis does not define him. It does not change how I feel about him. What kind of partner would I be if I bailed at the first sign of distress?

Back in the first group, I hoped my response-by-manifesto of sorts would have a positive effect, so I stuck around for a bit to see. It didn’t. All I saw was more women telling people to leave their spouses and get out while they still could. I waited (with decreasing optimism) until I couldn’t take it anymore, and then checked out.

By the time I finally left both groups, I was depressed, deflated, and even more worried. My experience, though, appears to have been a fluke. The reason I signed up for these groups in the first place is because I heard how helpful they can be from friends who belong to their own Facebook support groups. I was shocked enough by what happened that I even floated the ridiculous idea that someone was angry with me and following me into all my groups, just to leave unhelpful comments.

Since my fallout with the spouse support groups, I’ve actually found one that’s beneficial—but it’s one for my own circulation disorder, not one for people married to someone with the disorder. A nonprofit research association runs it and often shares new related studies and breakthroughs. I’ve also learned a few tricks for navigating the Facebook support communities, and making sure you find one that’s in line with what you need.

My husband’s diagnosis does not define him. It does not change how I feel about him.

Look at the posts and comments already there first. That way you can gauge how helpful the responses are and whether the information being shared would be useful to you. Try to find a group organized by a nonprofit association or research committee. Here, you’ll find more fact-based advice and concrete examples of ways to cope, and there’s generally a team behind the management and moderation of the group.

Perhaps my biggest suggestion, though, is to join a group focusing on the condition itself, rather than one focused on supporting others who are connected to someone with the issue. What better way to feel like you can be effective in your coping strategies than getting those strategies from the sufferers themselves?

As far as my husband, his prognosis is still undetermined. We still go back for regular MRIs to be reminded that, yes, that thing there isn’t supposed to be in his brain. But hey, it’s stable, so we should be happy! He still struggles with his hearing issues because no doctor has been able to give us a good solution or even a way to manage it.

I still have no intention of leaving my husband. But the more I look back onto my experience in those groups, the more I start to understand the mindset of the women who did leave. Not because that’s how I feel, but because I know how excruciating it can be to watch a suffering partner, and to know that one day, you’ll probably lose them to the same unseen monster you stare at every day. It’s not something everyone can handle—it’s not something every marriage can handle. And for that reason, I truly wish them all the happiness they can get.


Sick and Tired

Fannie Lou Hamer was one of America's most important civil rights icons. But her health issues show that racism isn't just a social disease, it's a physical one.

Located in Mound Bayou, Mississippi, a town founded by former slaves, the tombstone of Fannie Lou Hamer features an unusual inscription. Bordered on each side by urns overflowing with flowers, the Civil Rights icon’s gravestone doesn’t just include the date of her birth (October 16, 1917), or the date of her death (March 14th, 1977). It also features her most famous quote–“I’m sick and tired of being sick and tired”– a phrase she coined during a speech made alongside Malcolm X, before an audience at Williams Institutional CME Church in Harlem on Dec. 20, 1964.

While the quote originally referred to the centuries-long fight for black Americans to be treated with respect and dignity, it could very well have been a literal acknowledgment of her health struggles. Fannie Lou Hamer was sick, and she was tired. At the age of 59, she eventually succumbed to complications of heart disease and breast cancer, but not before helping move race relations in America forward. Her life was a testament to how society, including the healthcare system, have failed black people.

American civil rights leader Fannie Lou Hamer  testifying before the Credentials Committee at Democratic National Convention in Atlantic City,  August 22, 1964.

Hamer is most noted for her valiant fight against Mississippi’s oppressive power structure. In 1962, she joined 17 others at an Indianola courthouse to register to vote.“That happened because I went to a mass meeting one night,” she writes in her autobiography, To Praise Our Bridges. “Until then, I’d never heard of no mass meeting and I didn’t know that a Negro could register and vote.”

That meeting, she said, was conducted by leaders of the Student Non-Violent Coordinating Committee (SNCC). When they’d asked for volunteers to register the next day, she raised her hand. Although there were violent efforts in Mississippi at the time to oppress the black vote, Hamer wasn’t afraid. “The only thing they could do was kill me and it seemed like they’d been trying to do that a little bit at a time ever since I could remember,” she wrote.

“The only thing they could do was kill me and it seemed like they’d been trying to do that a little bit at a time ever since I could remember.”

Over the years, Hamer traveled through the state teaching black people to read and write in order to pass dubious literacy tests that prevented them from voting. She was arrested, beaten, and shot at throughout the course of her activist work. In June 1963, she was beaten so badly in a Winona, Mississippi jail that she suffered permanent kidney damage and was nearly blinded.

In the summer of 1964, she spoke to the Credentials Committee of the Democratic National Convention in Atlantic City. There, she represented the Mississippi Freedom Democratic Party, a group challenging an all-white delegation from Mississippi  filled with fervent segregationists. Upon telling her story about trying to vote in Mississippi, President Lyndon B. Johnson himself called an impromptu press conference to force her to stop speaking during the televised hearing. The effort backfired spectacularly; Major networks would later play her testimony from the previously-preempted newscast. Hamer could not be silenced.

She spent the rest of her life fighting for voting rights and to close the gap of economic disparity in Mississippi. The political oppression of the time was not the only system Hamer struggled against in her lifetime, though. She was also a victim of the healthcare system.

In 1961, Hamer went to a Sunflower County hospital so doctors could remove a uterine tumor. She left without her reproductive organs. The procedure–which she dubbed a “Mississippi appendectomy”–was part of a concerted effort within the state to reduce the local black population by sterilizing men and women of African descent without their knowledge or consent when the opportunity medically presented itself.

Unable to have children, Hamer was devastated. To be a poor, black woman in the rural south, there wasn’t much outside of the ability to reproduce that she could claim as her own without the threat of having it taken away, according to Chana Kai Lee in For Freedom’s Sake: The Life of Fannie Lou Hamer.

“The impact of this [tragedy] found its way into her political thoughts,” Lee writes. “During the hearings, Hamer raised this issue as if it was an afterthought. However, she may have raised it last because it was something that bothered her most out of all the other horrible experiences that typified her life. Nevertheless it stands out amidst the rest of her testimony, for not everyone in the movement regarded sterilization as a political concern of their work in Mississippi. Clearly Hamer did, and she spoke about it.”

“Just because people are fat, doesn’t mean they are well fed,” Hamer pointed out. “The cheapest foods are the most fattening ones, not the most nourishing.”

Since she grew up in malnourished poverty with no access to preventive health care, Hamer understood that determinants of health— your environment, your social status— would predict health.  She advocated for better health education in local black communities, even arranging for nutritionists to come speak about the best ways to have a balanced diet while living in poverty. “Just because people are fat, doesn’t mean they are well fed,” Hamer pointed out. “The cheapest foods are the most fattening ones, not the most nourishing.”

Fannie Lou Hamer could be fierce, but her years of advocacy took their toll on her health.

She was even an early advocate of what might be considered the precursor to the local food movement, creating the Freedom Farm Cooperative as a way of promoting the value of eating foods raised by people’s own hands. While looking for money to finance the cooperative, she wrote in a 1971 letter to the Field Foundation in New York City: “Freedom Farm Corporation is working. Its purpose of feeding people, on one hand, is the essence of humanitarianism; but at the same time it allows the sick one a chance for healing, the silent ones a chance to speak, the unlearned ones a chance to learn, and the dying ones a chance to live.”

A lifelong civil rights crusader, Hamer’s health woes aren’t an outlier. Many activists before and after her experienced poor health, including heart disease and high blood pressure, exacerbated by the stress of fighting systemic racism in the country.

Following his death in 1968, an autopsy confirmed that Martin Luther King Jr. had a prematurely aged heart. Some close to him attribute an ailing heart to the ongoing stress of the civil rights movement.

Racism isn’t just a social disease. It’s a physical one.

In a PBS documentary, Citizen King, his biographer Taylor Branch proclaimed: “The movement took a huge toll on him. When they did the autopsy, they said he had the heart of a 60-year-old, he’s 39. So yes, it took a big toll on him, and he was constantly fantasizing about getting out of the movement.”

These issues continue today.

Civil rights leader Martin Luther King Jr.’s activism might have cost him his life even without his assassination: the stress of fighting racism had prematurely aged his heart.

New York activist Erica Garner, daughter of Eric Garner—who died at the hands of police in 2014, a brutal death that helped kick off the Black Lives Matter movement— died of a heart attack on December 30, 2017. After years protesting the systemic brutality that police routinely deploy against black men like her father, she had an enlarged heart.  In an interview for a web-based show just weeks before her death, she talked about the stress she and others feel while working as an activist. “I’m struggling right now from the stress of everything  because the system, it beats you down,” she said.

Racism isn’t just a social disease. It’s a physical one. Recent studies have shown that perceptions of discrimination cause great harm to the body when its pervasive. The stress of a racist or discriminatory act often yields slower declines in cortisol levels throughout the day. This can lead to obesity, depression, chronic illness, a weakened immune system, and even death.

After a life fighting against racism, Hamer was afflicted with all of the above. The cumulative impact of grief, trauma, and injustice is widely believed to have cut her life short.

In 1972, following continuous activity including a failed state senate race, her body gave out. She collapsed from what was described as “near nervous exhaustion,” according to Kay Mills, author of This Little Light of Mine: the Life of Fannie Lou Hamer.  She never really recovered. In early 1977, she was hospitalized to be treated for breast cancer, diabetes and heart disease.

A friend, Unita Blackwell, noted that the very religious Hamer, knew she was dying. In This Little Light of Mine, she was cited saying, “She called me one day and said ‘girl I’m real sick. I don’t want to die, but I made my peace with God.”

“She called me one day and said ‘girl I’m real sick. I don’t want to die, but I made my peace with God.”

Historians are careful not to depict Hamer as a”strong black woman” —a well-intended but harmful trope which advances the narrative that women like her don’t need help, love and protection.

She did take care of her community, and tried her best to ensure they had a better way of life. It’s a common issue among black women to cater to many, but go without care for themselves. Hamer was a revolutionary but she wasn’t invincible. She needed care, too. Nonetheless, she leaves behind a legacy that shows her pain and suffering were not in vain.

While Hamer’s activism is echoed today, the notion of being “sick and tired” is now addressed with a new buzzword, yet old concept: self-care. As black women honor Hamer and other activists for their courage, they also must heed the warnings of how oppressive systems, stress and chronic illness impedes one’s quality of life. They need to do more than care for their communities. Hamer would also want them to care for themselves.


The Four Magic Words That Gave Me My Voice Back

After a thyroid operation robbed me of my voice, I turned to a beloved children's book to give me strength.

As a little girl, my favorite book was The Little Engine That Could. I wanted to read it again and again. A strong-willed child, that story of the little choo-choo who would chant “I think I can, I think I can” until he made it over the mountain spoke to me.

Yet I don’t think I ever realized just how powerful those four words could be until I lost my voice after having my thyroid removed.

I remember my doctor saying to me: “The lump in your throat has enlarged. Your thyroid will have to come out. I don’t think it’s malignant, but we can’t take a chance.”

I’ve always been an optimist. So while I was scared of surgery, I kept repeating to myself: It’s probably not cancer. 90% of patients who have this operation are fine. 

The author, Kay Winters.

When the dreaded day came and the operation was over, the lump was benign. “I knew it!” I crowed.

Or I tried to. But almost nothing came out. My voice was hoarse and raspy, like a person making an obscene phone call.

The doctor assured me my voice would come back in time. But it didn’t.

Recovering at home, I snuggled down beneath the patchwork quilt, and tried to push back the January gloom by reading cheerful “Get Well” cards, eating good food and wine, and visiting with friends who came to see me and my husband, Earl. Every morning, I would wake up, hoping this was the day my voice would come back. “Hello, hello!” I would say, hoping to hear my voice. But only a sliver of sound ever came out.

After a month with no improvement, I went back to the doctor. He looked down my throat with a mirror, and shook his head.

“The nerves are damaged,” he said. “You have a paralyzed vocal cord. I’m sorry but there’s nothing to be done. You have all the voice you’re going to get.”

The doctor said: “You have a paralyzed vocal cord. I’m sorry but there’s nothing to be done. You have all the voice you’re going to get.”

After that, I knew my days as a part-time college instructor and consultant for the American International Schools had ended. Even the thought of going back to my job as a supervisor in four elementary schools, with only a whisper was mind-boggling. In the end, Earl had to push me out the door to go back to the outside world.

I tried to be cheerful and brave. On the outside, I smiled, but inside I felt my world had collapsed. Communication was who I was. Now, even asking for an order of seafood salad at the deli counter was almost impossible, let alone sustained conversation: I could barely be heard.

Online, Earl bought me a portable microphone, so I could amplify my voice for others. It looked like a black pocketbook and I could sling it over my shoulder. I practiced using it at home, until I was comfortable with it, then return to work.

At school, staff members reached out in loving ways. Notes in my box, a squeeze on my arm, hugs in the hall, a pot of tulips for my office. There was even a secretary who always said: “Oh, you sound so much better today!”

I didn’t. But she helped me to think… maybe…

Nine months passed. There had been no change in my voice.Everyone was very patient and understanding.  The students learned to be very quiet when I came in the room. They would wait for me to plug in my mic to begin a lesson. Likewise, there was always a microphone available for me in the auditorium, and in smaller meetings, I would use my portable to be heard. But it was make-do and needs must. I felt tentative, uncertain, and vulnerable.

Finally, I met a kindergarten teacher from another district. She had had the same operation; she also whispered. But her voice was louder and stronger than mine.

We compared notes. “Go see Renee Blaker, a speech pathologist from Doylestown,” she said. “If anyone can help you, she can.”

I needed a prescription to see a speech pathologist, but when I called my doctor about it, he snorted. “Waste of time,” he said. “Teflon surgery would be a better bet.”

“I want to try,” I whispered. He sighed, and reluctantly signed the paper.

Renee was a tall, attractive woman with an expressive face, kind eyes, and dark hair. She listened to me whisper, then read the doctor’s report. She shook her head and smiled at his negative assessment.

“I have a little magic in my pocket,” she said knowingly. “I can help you if you work. You’ll need to practices five times a day, for fifteen minutes each time. I’ll see you twice a week.”

“I have a little magic in my pocket,” she said knowingly. “I can help you if you work.”

It was December. As I drove home from that first appointment, snowflakes whirled on the windshield, and I thought I heard a little voice in my head say:

I think I can, I think I can…

I followed Dr. Blake’s instructions. I started with hard vowels–any, every, each, out–and soon moved on to phrases. Alter the arbor, etch a sketch. Five times a day for 15 minutes, I recited these seemingly random words and phrases, week after week.

I’ve always believed in the power of visualization. Every day while pushing out those phrases, I imagined standing in front of the school auditorium, speaking loudly and clearly. It was the greatest reward I could think of.

But there was no change: my voice was still a whisper. Yet I continued; at least the exercises made me feel like I had some control.

January, February, March: they all passed. Now, I was up to sentences: “It’s odd that Arthur’s not at Eileen’s tea.” I said that so often, my husband started saying it when he got into bed: “Yes, that is odd about Arthur, isn’t it?”

April, May June. No change. Sentences turned into paragraphs. Still I practiced. When we sailed on the Chesapeake, or Lake Nockamixon, my words wouldn’t carry. The wind would whip my whisper away.

Some days, when I went for speech therapy, I just cried. We didn’t do sentences. Renee and I talked. She understood.  I had to mourn my loss before I could move on. Her staunch belief that I could retrieve my voice gave me courage to continue.

And then it was Labor Day. Time for another school year. As I came in, teachers said: “Oh, you sound stronger.” I thought maybe I did, but I couldn’t be sure.

November.  Time to welcome my reading volunteers at the Bridgeton School. The auditorium was full with parents. As I picked up the microphone, the audience got very quiet.

“Welcome to a new year!” I said.

It wasn’t a whisper. Out came my voice!

I couldn’t believe it. People rushed up to give me a hug. After all that practice, and all my work visualizing just this moment of triumph, it had finally happened!

In one swoop, I felt like I’d gotten my life back.

My recovery wasn’t a miracle. My vocal cord was still paralyzed, but thanks to all of my practice, the other one had moved closer and was now doing the work of two.

In one swoop, I felt like I’d gotten my life back. Day after day of vowels, consonants, phrases, sentences…. the endless support of my friends, family, students, and colleagues… and that little pocket magic of Dr. Blake’s. It had all paid off!

But maybe, after all, some of the credit should go to the Little Engine That Could. He, too, had taught me some magic words:

I think I can, I think I can…

Health & Fitness

To Beat Cancer, Talk To Your Family

After a cancer diagnosis, families that talk and listen to each other experience better health outcomes than those who don't.

Though medicine has scarcely stressed it, for Dr. Carla Fisher, an assistant professor at the University of Florida’s School of Journalism & Communication, good cancer care is all in the family. Strong familial relationships, she says, are crucial to cancer recovery. To prove it, Fisher has interviewed over 150 patients and family members about their relationships with one another then analyzed health outcomes of her interviewees. “We’ve found that [family] communication patterns can actually impact health outcomes,” she says.

Coping Together, Side By Side by Carla Fisher explores how family relationships can help improve health outcomes after cancer diagnosis.

Though such interviews can become emotional, they have allowed her to identify common communication patterns and formulate recommendations for clinicians and patients that encourage more positive and wellness-supporting rapports. Fisher focuses on breast cancer and the mother-daughter relationship (a subject which she tackled in Coping Together, Side by Side: Enriching Mother-Daughter Communication Across the Breast Cancer Journey) but the idea extends to other familial ties as well, she says.

In her field, Fisher is foremost. Along with earning numerous awards, she has collaborated with such medical behemoths as USAID, the National Institute on Aging, the National Cancer Institute, Mayo Clinic and the Memorial Sloan-Kettering Cancer Center. Clinicians, she says, are generally receptive to her ideas. But it will take time to fully incorporate them into a field that has long weighted the biophysical aspect of patient care over the psycho-social. Still, Fisher is in it for the long haul, she says.

We reached out to hear more about how good family dynamics can help fight cancer.

What initially got you into this kind of work?

Probably subconsciously it’s always been driven by my own family narrative. My mom is the youngest of eight and her oldest sister Rose was diagnosed at age 34 with breast cancer. Rose had four daughters, from age two to fifteen. Rose would talk about how the only thing she was concerned about was her daughters. This was during a time when they really didn’t know what they were doing with cancer, in the late sixties. She ended up dying two years later. I grew up hearing about that from my mom. Rose was like a second mom to her. But the family hadn’t let her talk [about her cancer]. My mother always looked back on that as, ‘We should have let her talk.’ She would remember that and tell me that her own mother, my grandmother, was never the same after Rose died. That profound loss was something that was woven through the fabric of my family identity. I hadn’t realized that it is actually a lot of families’ stories until I started this research. I would hear it over and over again.

Why is it important for cancer patients to sustain healthy familial relationships?

You think it would be a no-brainer. But the way things are prioritized in healthcare, you still have to have that evidence-based argument.

One of the things I’ve found is that, for mothers and daughters after a breast cancer diagnosis, if it’s a relationship where they’re communicating more openly about their concerns and needs, you see better health outcomes. On the flipside, if they’re acting more withdrawn from each other, they tend to have more negative physical health outcomes; fatigue, sleep disruption, things like that.

That’s what always informs my research: the clear connection that your interpersonal [family] life is as important to your survival as other physical or biological processes that tend to be prioritized in healthcare.

Your [family] life is as important to your survival as other physical or biological processes that tend to be prioritized in healthcare.

Health isn’t experienced in an individual vacuum. But at the same time, we’re not born with innate communication skills. We might think we’re being supportive or talking about things in a healthy way [with our family], but that’s not always the case. What I really focus on is identifying patterns of communication that promote health. Then I make that argument in healthcare, particularly cancer care, that we need to incorporate family communication and support services for the patient in order to ensure that the patient is maximizing their health and survival.

Carla Fisher

How does age and generation play into this?

What’s healthy for, say, a daughter diagnosed [with cancer] in her thirties coping with a 70-year-old mom, looks a little different if it’s the mom who was diagnosed. That’s partly because the younger generation’s boundaries of privacy are very fluid: we’ve been socialized to be more open. The older generation grew up in a time where you didn’t even say the word cancer: it was highly stigmatized. You certainly didn’t talk openly about the female body in a way that we do today.

The older generation grew up in a time where you didn’t even say the word cancer: it was highly stigmatized.

Older women in their 60s and 70s will talk to me about how their parents didn’t tell them anything. They had no idea what was going on when there was a parent diagnosed with cancer. So they feel that they’re being very open with their adult children by letting them know what’s going on and keeping them in the loop. Then, when you talk to their adult children, especially the daughters, they don’t necessarily feel that mom is being as open as what they would want. For those relationships, it’s really important that daughters respect privacy when it comes to parents. The boundaries of privacy are critical when it comes to their wellbeing. You don’t necessarily need to know everything.

How is it different when it is daughters that have been diagnosed?

Daughters in 20s and 30s are still developing a sense of independence. One daughter said to me, ‘The one thing I like that my mom did was that she left it up to me whether or not I allowed her to be there and be present in treatments or appointments.’ She appreciated that because it provided her control and independence, something that you’re robbed of after a cancer diagnosis. When she finally did say, ‘Mom I need you to help me,’ she said it really struck her how happy her mom was that she had allowed her to be there. ‘I realized that my mom needed to be there. She needed to mother. That was her own way of coping with [my diagnosis],’ she told me.

So I think when you talk to both of them together, they get a better sense of what it is that [the other] needs.

What are some signs of a not-so-healthy mother-daughter relationship?

When moms are diagnosed, they’ll often talk to me about how they want to talk to their daughters about what’s going on. They have this profound sense or need to protect their children from developing the disease themselves in the future. But oftentimes, after a diagnosis, daughters will withdraw from their mothers to avoid talking about cancer. One daughter explained it to me: she could not picture her mom not being there next year, because doing that was just too much for her. So she shut herself away in a box as a way of self-preservation. The problem is, mothers get really worried about this. So even if a daughter doesn’t intend it, this behavior can actually inhibit her mother’s health.

What ended up getting this particular daughter to come out of that box was realizing that she could support her mom in a way she could never do before. And also talking about cancer made it less scary. When not talking about it, your imagination runs wild and it becomes this big scary nebulous thing.

What are some recommendations you make to families dealing with diagnosis?

Humor, listening, affection. That’s listening and validating feelings, not listening and silencing them. So if someone says, ‘I’m having a shitty day’ or ‘I’m worried about recurrence’, you should not say, ‘Don’t worry about that,’ say, ‘Yeah it’s scary, I agree. I’m here for you.’ Listening with silence is good too, though it is hard for all of us. Being more open and showing affection is great. Affection with no words is really, really helpful emotional support for mothers and daughters. Humor, listening, affection.

This interview has been edited for length and clarity.

Health & Fitness

2017: Our Favorite Athletes

Sport is for everyone. Here are some of the most amazing athletes we spoke to in 2017.

Athleticism is all about pushing your body to its limit; in doing so, you find strength you never knew you had. That’s why every athlete is amazing, from the NFL linebacker with the rare bone disorder, to the 18-year-old college freshman who bikes cross country with Type 1 Diabetes. In 2017, we at Folks have been lucky enough to be inspired by the stories of countless athletes, all of whom have found new strength in sport while also managing a health condition. Here are just a few of our favorites.

Rims and Hoops in Afghanistan

After he was paralyzed at 19, Jess Markt made it his mission to teach wheelchair basketball to young men in some of the most war-ravaged nations on the planet.

The Overachieving Teenage Pancreas

18-year-old Abby Pepper might be an overachiever, but thanks to Type 1 diabetes, she knows better than most how important it can be to ask for help.

Fighting Cystic Fibrosis With A Rumble And A Roar

When his condition was at its worst, Paul Underhill designed his own nourishment drink to prevent himself from starving. Now, he sells his drink across Canada to help others.

Fitness, Pain, and Ankylosing Spondylitis

Despite her diagnosis, Keefa Hawkins pushes her body to the limits through Crossfit: part of a quest to show that physical fitness is for everyone.


Amputee soccer player, Powerade spokesmodel, and mountain climber, it’s as a teacher that Nico Calabria thinks he can really make his mark.

The Skater Kid Finds His Tribe

Born with spina bifida, Josh Bridgewater never felt like he belonged until he stepped on a skateboard for the first time.

Racing From Pain To Passion

When she was diagnosed with ulcerative colitis, Sarah McPherson thought she might never do sports again. Now an indomitable triathlete, they call her the Fearless Warrior.

The Marathoning Mom With Bones Of Glass

Why would you run marathons when you have bones that could break at any time? If you’re Jennifer Jansonius, you do it for your daughter.

From Bone Disorder To NFL Bone Crusher

As a child, former Dallas Cowboy Montrae Holland suffered silently with Blount’s Disease for years, all for his love of the game.

That One-Leg Monster

How K.C. Mitchell, a combat-wounded Army veteran, became the strongest amputee powerlifter in the world.