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Essays

The Happy Little Life Club

The last lesson my mom taught me before she died of stomach cancer was the secret to living life to its fullest.

“How am I going to raise my kids without you?” I asked clenching my hands tightly in my lap. “They’re still babies. I need you. You’re not done yet.”

I shifted in the plastic-backed wooden chair and looked around the kitchen, as if taking it in for the first time, or, perhaps, the last. The mirrored ceiling fan above our heads spun in circles, calm and steady, just like it did for countless meals growing up.

It was hard to look at her; she was different. She smiled at me in a way I’d never seen before.

“You will be fine,” she said. “You’re a good mom.”

She was serene and at peace with her decision, but we were not. She’d already moved on, but we hadn’t.

It was mid-November 2014 and her four grandchildren were playing with their great-aunt, two rooms away. In the kitchen, we could hear their giggles and gleeful screams, along with the popping sound of a push toy and a Disney movie playing in the background. My mother would usually never miss an opportunity to spend time with her grandchildren, but nothing about what we were going through now was usual.

She was serene and at peace with her decision, but we were not. She’d already moved on, but we hadn’t.

The air in the house was heavy this time. Heavy in a way it had never been before. Even during the three previous times where she’d faced cancer, there was hope. This time, all there was was dread, thick and looming.

Yet through all of this, my mother sat across from us, completely content. The morphine had begun to take effect, easing her of the unbearable pain of Stage IV stomach cancer. This time, we all knew, death was going to win, but only my mom seemed at peace with this. Perhaps she felt some peace with the fact that she had chosen to leave on her own terms, by coming home and saying goodbye to friends and family. But part of me wondered if the morphine had transformed her personality.

Clockwise from top-left: my sister, me, and my Dad, saying our final goodbyes to my Mom in November 2014.

A pessimist by nature, my mother was not usually the serene, peaceful woman she was now. As her brother said, she was normally staid. Ask anyone who knew her how she’d face her death, and they’d tell you the same thing:  Yes, she’d have emotions, but not these. She’d be angry. She’d be sad. She’d be jealous of those who were able to watch her grandchildren grow. She wouldn’t smile. She wouldn’t be at peace.

All sitting together at the table, my mom faced me, my sister, and my dad, saying her goodbyes while she was still lucid. I was directly across from her, and her stillness, her peace and her sense of calm as she said goodbye to the three of us flooded me with emotions.

Her stillness, her peace and her sense of calm as she said goodbye to the three of us flooded me with emotions.

She never sat still like this, ever. She was a doer, always a doer. She’d clean the baseboards while we spoke on the phone. She weeded her grass by hand. Weekly. She purchased and planted flowers at her synagogue. She took long walks and bike rides; she exercised daily in front of the TV. She didn’t take the time to sit and enjoy the calm peacefulness of a warm spring morning, dew still on the grass, birds singing and the sun warming the earth. She was moving. Keeping busy at all times. There was always something for her to do.

But now, facing death, she was stiller than I’d ever seen her. And I didn’t know what to think about it. Mom seemed to have no regrets about ending her life, even though she was leaving so much behind.

A few months before, a little over one year into what would be a contentious three-year divorce, I’d taken my children to visit family friends at their beach house. One night, after the children had gone to bed, I asked what my friend’s network name “hllc” stood for.

“It stands for happy little life club,” he told me. He’d taken up that motto after his divorce. It was how he chose to live his life. That was nice, I thought, but definitely not my life. Yet that phrase stuck with me for some reason, never too far from my mind.

As I sat observing my mom watch her family tearfully tell her goodbye, “happy little life” re-entered my mind. Is that what she had, I wondered? Even though she was leaving so soon, abandoning the life she worked so hard to create? Was she really happy? Was she really content leaving her life? Her own “happy little life” that was still in progress?

We each took turns telling my mom how we felt about her, what we’d miss, how sorry we were that this was happening to her. Our eyes were wet, but not hers. The only thing she gave back were smiles and small words of comfort.

The next few weeks would be challenging. Death refused to take my Mom quickly. As we waited for her to pass, I found myself thinking back, over and over again, to our final conversation. The peace from which she spoke—her acceptance of death—impacted me in a way I couldn’t quite understand, but kept coming back to.

In the three years since my mother died, I think I have finally come to understand what my mom communicated to me that day. When we sat down together at that table, my life was full of stress and sadness, but since then, I’ve divorced, returned to my writing career, and worked hard to create a life that I was proud of; a life I could accept leaving with nothing left undone or unsaid at the end of the day.  I’ve challenged myself to do things that bring me joy, knowing that life could end at any moment.

So today, my mother’s final serenity make sense to me. The woman who had moved through life as if it were a to-do list of tasks had finally checked off every last one, and was free to rest. The woman who never sat still finally did.

That woman, my mother, had her happy little life, just in her own way.

And now, I know she was trying to tell me, it was time to make mine.

Q&As The Good Fight

The Dog Walker Who Beat HIV

Otherwise known as the Berlin Patient, Timothy Brown is the only known person to have been cured of HIV/AIDS. But he won't rest until a cure is found for everyone.

There are around 36.7 million people in the world living with HIV/AIDS. Since it appeared in 1981, 35 million have died from complications associated with the deadly autoimmune disorder, and another million or so are expected to be infected by year’s end. Countless fortunes have been spent on concocting a cure which has not materialized. There is one person, though, who has beaten HIV for good, a 51-year-old professional dog walker in Palm Springs named Timothy Brown. Between 2007, when a bone marrow transplant in Germany rid him of the virus, and 2010, Brown was known simply as the Berlin Patient. For reasons pertaining to his health, he had chosen to conceal his identity for nearly three years. Brown, who had lived in Europe for two decades working odd jobs, decided to reveal himself to the world after relocating to San Francisco. Back stateside, he had to adjust not only to life back home but to his new role as humanity’s sole HIV miracle.

Timothy Brown, also known as the Berlin Patient, is the only person known to have ever been cured of HIV.

At first, attention was intense. Brown’s email inbox overflowed with messages, many of them from HIV patients hoping to hear how he did it. He tries to respond to as many as he can but he cannot reach them all; currently he has around 100,000 unread emails. Since Brown’s transplant under a doctor named Gero Hütter, dozens have tried to replicate the procedure but none have found lasting success. Brown has been poked and prodded by countless researchers; his blood stored in labs across the globe, but how exactly his transplant cleared him of HIV remains pretty much a mystery.

Brown has become a leading advocate and spokesperson for the cause of finding a cure. When not walking dogs, exercising, or doing yoga in Palm Springs, where he recently moved, he attends HIV/AIDS conferences around the globe, often as a keynote speaker. In July, he will be bearing a torch for HIV survivors during the 22nd International AIDS Conference in Amsterdam. His existence gives hope to patients and researchers alike; he proves the possibility of a cure. We reached out to Brown to hear more about him and his advocacy work.

You are known famously as the Berlin Patient. But you’re from Seattle. What brought you to Germany in the first place?

I had taken a post-graduation Eurorail trip with two female friends in 1990. We started in London and went all over western Europe. I was gone for three months. When I got back to the US, at 24, I started working in banks. I grew bored with that so I quit and took on temp jobs. I didn’t know what the hell I was doing. I decided I’d move to Europe and picked Barcelona, which had been my favorite place I visited. In April 1991 I moved and stayed there awhile. At one point I lost my apartment in Barcelona and this guy I was seeing asked if I wanted to live with him in Berlin. I hitchhiked there. I worked for the British military as a translator then at a cafe near Checkpoint Charlie.

When did you find out you had HIV?

June of 1985. I had been going out with this guy for six months when he told me that he tested positive for it. He said that I should get tested; he was concerned about my health, though not really for his own. The doctor said my CD4 count was pretty low at that point, about 250, low enough to think that I had had HIV for a long time. She thought I should start treatment immediately. The next year, 1996, Protease inhibitor, an antiretroviral drug, came out and I started taking that. It made people who looked on the edge of death get better; it was like you got a new lease on life. Eventually, I was switched to a combination of three drugs and then was able to kind of forget that I had HIV. It just became, Okay I have it but I’m doing fine and feel healthy.

What made you take the step from being contently HIV+ to getting your fateful bone marrow transplant?

In 2006, I took a trip to New York to attend a wedding. The whole time I was very tired and didn’t know why. I thought it was jet lag but it continued back in Berlin. I saw a doctor and eventually, it was determined I had leukemia. I didn’t want to go to a hospital where there’d be a lot of stigma so he sent me to a university hospital in Berlin. I thought I’d do a round of chemo and the whole thing would be over. I’d be cured. But after the second round Dr. Hütter said he wanted to send my blood to a bone marrow stem cell blood bank to see if it had matches for my tissue type. It was just in case the chemo wasn’t effective, something to fall back on.

It ended up that there were way more matches for my blood then most people get–230 possible matches. That gave him the idea to look for a donor who was immune to HIV.

It ended up that there were way more matches for my blood then most people get–230 possible matches. That gave him the idea to look for a donor who was immune to HIV. He explained that 1% of northern Europeans have a gene mutation which makes them immune. Both parents have to have the mutation for the child to get it. Out of my 230 matches they hoped to find that donor. Eventually, they did.

I had the transplant in February 2007. The doctor’s theory was that if I got this transplant I would also become immune to HIV. I quit taking my HIV meds the day of the surgery. After it, I noticed physical effects. With HIV, I wasn’t able to gain muscle mass. But I was going to the gym every day and suddenly gaining muscle. I felt better. I was able to return to work. At first, after I stopped taking medication the virus went way, way up but then went down to undetectable levels. That took about three months.

You kept your identity a secret until 2010. Why?

My health, basically. I had to do a second transplant because the leukemia came back. I didn’t do so well after that one. My health was horrible. I had quit working before the second transplant. Then after the surgery, I had an episode of extreme delirium–mumbling and so on–and went back to the hospital where it was determined I should get a brain biopsy. Of course, they were worried that they’d find HIV or leukemia in my brain. They didn’t find either. However, the surgeons left an air-bubble in my brain. They did an emergency surgery and removed it. But having that there for several hours has screwed up my balance to this day. I walk like I’m drunk.

So the reason you decided to remain anonymous is because you were recovering?

Yeah.

Why then did you move back to the US?

Because I would either have had to go live temporarily in a home or find someone to take care of me at my home. I was basically bedridden, incontinent. I was in horrible shape. Through physical therapy, I was able to walk again. Then on Halloween of 2009 in Berlin I was out very late and got mugged, probably because I looked like an easy target. I was hit over the head and had my wallet stolen. I fell onto my left shoulder and hit my head on the ground. I got a concussion. It was kind of like having a stroke. I lost my ability to enunciate and had to do speech therapy.

That was a rough patch of years for you.

Yeah it was. But I’m on the other side of it and doing very well.

What has your advocacy work been like since returning to America?

My case is very important because it has proven that curing HIV is possible

My case is very important because it has proven that curing HIV is possible. I tell people that I don’t recommend curing HIV the way I did. It’s hard, expensive,and dangerous. It has been tried a few times but no one’s made it yet. And doing a stem cell bone marrow transplant is not something that can be done just for HIV because HIV treatment now is so good, it wouldn’t be ethical to do one on somebody.

Given how well managed HIV is today through antiretroviral drugs, do you think people are complacent about finding a cure?

Yes. I talked about that in a recent article I wrote. For HIV+ patients, a cure would mean they’d have to give up their benefits. Moreover, they’re doing fine on the medication so why do something that might kill them.

Do you sympathize with that view?

I do. But it’s disappointing. I was very disappointed after an HIV conference I went to recently in Seattle. It was something like 60% of the attendees who said that they really didn’t want a cure.

Brown credits a bone marrow transplant which gave him a rare gene for HIV immunity for his cure.

That’s surprising.

From a public health perspective, it is very important to find a cure. It’s way too expensive for governments and insurance companies to pay for HIV medication in the long term. It can really bankrupt smaller poorer countries. South Africa is a good example. At least twelve percent of the population is HIV+. That’s huge expenses. Not to mention the lives that are wasted.

How do you see your role as a public figure?

I won’t give up until a cure is found for everyone.

For people with HIV and their loved ones, I think I give them hope. I’m told by many, many researchers that I’ve inspired them.

No one has settled the debate yet over how you were cured. But how do you think you were?

I think the reason I’m cured is because I don’t have the CCR5 protein, which is absent from my body. I think that’s the main reason but there is still debate about that.

Are you hopeful that a cure will be developed in your lifetime?

Yes. I won’t give up until a cure is found for everyone. I have survivor’s guilt to a huge a degree. I’m the only person that’s been cured of it. I’m not a scientist but I do what I can to make sure the research goes on. I couldn’t sleep at night if I didn’t.

Profiles

No Breath To Spare

Jane Nelson's chronic breathing disorders might have required a dual lung transplant, but it hasn't stopped her from living her life.

When Jane Nelson, 30, dates, she can’t meet for sushi. Girls’ nights out no longer entail a bottle of red in a cozy Manhattan wine bar. And – a blessing and a curse – Nelson’s days of navigating New York City’s teeming subway system are over.

A culinary school grad who works in the wine industry, Nelson – the picture of health as a kid – never dreamed a nagging, dry cough would lead to months spent homebound tethered to an oxygen tank, and then a double lung transplant. Now, two years after taking an emergency flight to get her new, donated lungs, Nelson is still figuring out how to navigate one of the world’s largest cities as an immune-compromised woman who wants to date, socialize and move up in her career.

“I’m at that age when everyone’s getting married around me, they’re having babies and they’re buying a house,” Nelson said from her home office in midtown Manhattan. “The biggest part of my life is taking care of my lungs. You feel derailed.”

It’s a feeling Nelson acknowledges, but she doesn’t let it consume her. She won’t feel sorry for herself. Not when she forgoes a movie night at her sister’s in Brooklyn because she can’t spend $60 for cab fare there and back. Not when she feels awkward explaining to acquaintances she can’t shake their hand. And not when she passes a deli craving a crisp apple or thick pastrami sandwich. She won’t touch fresh fruit and veggies and cold cuts; they’re ideal hosts for bacteria and can easily get her sick.

“I never really had the sense of, this is so unfair, why me,” said Nelson, who graduated from the Culinary Institute of America at Greystone in Napa in the midst of her health journey. “I’m lucky my mind didn’t go there. My mind immediately went to, what do I do now, how do I minimize the effect of all this on my normalcy?”

“My mind immediately went to, what do I do now, how do I minimize the effect of all this on my normalcy?’

Nelson, who’s always had a passion for cooking, planned to work in the food industry in California after graduation. But then her lungs gave out and she moved back to New York to be closer to family. Accepting their help throughout her surreal journey didn’t come easy. As the fiercely independent middle child in a family of five, she struggled with admitting she needed support. But without it, she said, she wouldn’t be here today.

It was 2011 when Nelson took the train home to upstate New York for Christmas with a chronic cough. At the time, she was working in finance in Manhattan. She spent hours in her parents’ kitchen making a cheesecake, mixing cocktails and coughing. Her parents and siblings were concerned, but her doctor said it was likely allergy-induced asthma.

Back in the city, Nelson started noticing she was out of breath when running. Then, in February, her left lung collapsed. A biopsy revealed no clear cause. Doctors said sometimes lungs collapse in tall, lanky people. They operated on her, attaching the top of her lung to her chest wall, and then sent her on her way.

“I remember asking, ‘Do I need to change anything about my lifestyle?’ and they said ‘No, go on living your life.” So five months later, Nelson picked up and moved to California to pursue her culinary school dreams.

Four months after her move, Nelson was carrying a sheet tray with 20 pounds of Boston butt across the culinary school kitchen when she felt a crackling in her chest. She made her way to urgent care to find out her other lung had collapsed. They performed the same surgery to reattach her lung. This time, they found the cause.

Nelson on stage at a conference for the Pulmonary Fibrosis Foundation.

“I was coming out of sedation, and the pulmonologist was standing over me. He said, ‘You have something very serious. You have interstitial lung disease.’”

Nelson’s condition is actually a group of lung diseases that cause progressive damage to lung tissue. In many cases, exposure to toxins like asbestos or coal acts as a trigger. Nelson had neither. After diagnosis, life expectancy is three to five years.

Lying there in recovery, Nelson was silent. She stared up at the doctor. “He went on, and he said, ‘The last time I saw someone with a case this serious, it ended up with a lung transplant.’”

Over the next several months, Nelson continued to deteriorate. It was hard to breathe. But she was determined to graduate. She booked doctor appointments with specialists in San Francisco in the mornings, then drove back to Napa for school in the afternoons and evenings. “Missing class was not an option,” she said.

Four months after graduation, she flew home. “I was trying to face it all myself, but then I recognized I needed support,” Nelson said. “It’s okay to need help.” Her lungs were so weak she couldn’t fly without an oxygen concentrator, which helped her breathe. On the flight, the machine prompted fellow passengers to stare. Her heart raced. What if the machine’s battery died?

“It’s okay to need help.”

In New York, she found a job at a wine company and saw a new doctor. Her lungs got worse. “Everyday activities were getting harder and harder,” she said. “Different pieces of my life were being stripped away.” A year after moving back to New York, Nelson needed extra oxygen while exercising and sleeping. Her sister and brother-in-law pushed her to go to the gym with them; exercising would help her lungs.

Soon, she needed oxygen 24-7 and was tethered to a machine the size of a mini-fridge by a 50-foot tube. “I never left the house,” she said. She was using so much oxygen she couldn’t cook; turning on her gas stove would have been dangerous. By this point, Nelson was on a list for a double lung transplant at Columbia University, but her chances didn’t look good. She was running out of time; her doctor suggested she try another facility. She chose Duke University.

After her transplant, Nelson is happy and healthy.

The December morning Nelson, her mother and sister planned to drive to Duke to get Nelson tested and added to their transplant list, she couldn’t breathe. Her left lung had collapsed, again. An emergency flight took her to Duke, which added her to their transplant list on Christmas Eve 2015. Two weeks later, she had two new lungs.

It’s been two years since her surgery, and Nelson no longer needs oxygen. She was promoted and she’s dating again. She’s stopped worrying about potential suitors’ reactions to her condition. She hopes to get married. Having children is another matter.

She doesn’t want to pass the disease on, though it’s unclear whether it’s genetic. She’s also nervous her health could falter again, leaving a child motherless. “That’s something that gnaws at me,” she said.

Since her surgery, she’s organized events to raise money for the Pulmonary Fibrosis Foundation (PF is a type of interstitial lung disease), has spoken about the shortage of organ donors—New York has the third lowest organ donor rate in the country—and is writing a memoir. She’s taken vacations to Paris and Nashville, and she applied to get her MFA. She’s stayed in New York to be close to her family. “I want to get everything out of life that I can,” Nelson said. Her disease took her lungs, but it’s not stopping her from living.

Profiles

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.”

Essays

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.

Essays

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.

Essays

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.”

“How?”

“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.

Essays

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.

Histories

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.