The High Cost of Grandma’s Cooking

Growing up in Alabama, James Burge scarcely ever ate a meal that didn't contain lard. But as his family member started dying of heart disease, he rethought his culinary heritage.

For James Burge, childhood tastes like his great grandmother’s lemon cake. His earliest memories are of baking, his small hands carefully measuring out flour, fat, and sugar; his great-grandmother lifting him up to the stove.

James still makes the lemon cake. It’s an homage to his Alabama childhood, and to the relative who helped raise him. He’s adapted the recipe a little: using less sugar and oil, thanks to another family legacy, the high blood pressure which has been passed down the family line along with the cake.

According to the American Heart Association, “The prevalence of high blood pressure in African-Americans in the United States is among the highest in the world. More than 40 percent of non-Hispanic African-American men and women have high blood pressure.” This problem is exacerbated by cholesterol: cholesterol plaque hardens and narrows arteries, forcing the heart to work harder to pump blood around the body.

Now 28, James lives in Denver Colorado, where he works in digital marketing. Three years ago, a death shocked him into changing his way of life. Now, he reflects on the complicated relationship between food, family, illness and culture.

What role did food play in your family?

Whether it was the birth of a baby, or a death, every single event was food oriented. Food was a comfort, whenever you were feeling down or upset the first thing you did was run to the food because that’s where the memories of happier times came from.

What are some of the foods you remember from your childhood?

Fried chicken, ham, cakes, chocolate cakes ,vanilla cakes, banana pudding, collard greens, macaroni and cheese, sweet potatoes and sweet potato pies. There was lard and oil in everything. My grgreat-grandmothersed to keep a can of Crisco on the oven, it went into everything she made. It was normal to make a vegetable and add pork to that vegetable. It wasn’t until I became an adult that I realised, oh, you shouldn’t put lard in a salad.

It wasn’t until I became an adult that I realised, oh, you shouldn’t put lard in a salad.

Was this way of eating reinforced in your community?

It’s a big part of the community of the south, these very traditional meals: things people have been eating for years. I remember when we went out to eat, most of the meals we had when we went out were exactly the same things we ate at home. So it becomes a community mindset, which influences the family mindset.

Did your family members connect the health problems to this way of eating?

Growing up, a lot of my family were heavyset, and had problems with high blood pressure. There was no acknowledgement it was damaging. I remember when some family members from out of state visited, who didn’t have some of the same physical and health issues. They’d mention, oh, that’s a lot of grease. Or, that’s a lot of dressing. I remember those moments throughout childhood but those were so few and far between that they didn’t register.

What triggered your change in lifestyle?

Two years ago, I got a phone call from my grandfather, telling me my great-grandmother had passed away, due to complications related to high blood pressure. One of the key things he said was about her cholesterol, that it wasn’t where it should be.

Three years before that, when I was in college, I went to a health fair at the university. One of the booths was specific to cholesterol. They took my blood pressure and then they said, you suffer from high cholesterol. I remember thinking, that’s not good, but it doesn’t sound serious, it’s not heart disease, I didn’t think it was something I needed to worry about.

I remember thinking, that’s not good, but it doesn’t sound serious, it’s not heart disease, I didn’t think it was something I needed to worry about.

So fast forward a few years, I hear a family member has passed away and it took me back to that moment where someone told me I was at risk and I had ignored it. I thought it was time to pay attention and do something about it. I realised that lifestyle dictates whether you’ll develop any type of disease as you get older.

What changes did you make to the way you lived?

I did some research on my own, then I started having regular health checks. As I was growing up visiting the doctor for a check up wasn’t a thing. You went to the doctor when something was broken, or not working correctly. And that’s a cultural thing, I believe African Americans don’t go to the doctor just to see how we’re doing. I think that’s built in economics and race relations.

My blood pressure was around 145/90. The doctor said because I started early—I was 25—it wasn’t too late to make changes. I joined a gym, and cut out a lot of meat and started eating more fruits and vegetables more often. I had my blood pressure checked a month or so ago and it was 130/85.

What do your family in Birmingham think of all these changes?

When I visit Birmingham they look at me as if I’m crazy because I ask for a salad. I’d say, how about instead of a barbecue this weekend, we put together a salad bar? The looks I’d get! I do eat the barbecue but I think about my portions. My family will say, “you need to eat all that food on your plate”. There isn’t much thought about portion control, just that there’s all this food, so let’s eat it all.

Do you try and talk to your family about their health problems?

Yes, and they do not want to hear it. It’s difficult because I want to help them, I want to make sure they’re here longer. I think change would have to come from a community standpoint, a bigger change as opposed from a micro-change because the way of eating is so ingrained in our family and culture, and the unhealthy disease part of things is normal. There’s even little nicknames for it, like “the gouts”, little terminologies that almost make it less of a concern.

There’s even little nicknames for [high blood pressure], like “the gouts”, little terminologies that almost make it less of a concern.

You’ve mentioned about the pressure within the LGBT community to look a certain way, and that the perception is that looking a certain way is more important than health. How have you challenged that in your new lifestyle?

After I came out as gay at 16, I realised that within the community there was a standard of beauty amongst gay men. I thought, these people look normal, but underneath they struggle with illness. As I started to grow into my adulthood it became evident that most of the guys who have all the dates look a certain way. I internalized a lot of those messages, and thought as long as I maintain how I look, that’s all that matters, it doesn’t matter what I feel like inside, it doesn’t matter what diseases I have as long as the outer appearance is okay.

Even going to the gym, it wasn’t so much going to get my heart rate up or making sure I actually sweat, it was so when I looked in the mirror I’d look attractive. A lot of that was systemically based in that community of gay men where how you look is more important than you feel and what’s on the inside.

What about now? Are you talking about this stuff?

I’m in relationship, we’ve been together for a year and a half. It was something I was uneasy about having a conversation about as at the time I was still grappling with it and making strides to make sure it was under control. We had a conversation about it eight months ago while eating dinner. I said, I don’t want any cow’s milk and I don’t want this I don’t want that, and he was like, so why are you not eating pork, or fried foods? What’s wrong? So that’s when the conversation came up.

I’m not so much forward with it but I won’t hide it. I would love to help others who also deal with [high blood pressure], even if it’s just to say, you don’t have to hide, most people won’t judge you for it most of the reason it happens is because it’s hereditary. It’s not something you did.

After all these changes you’ve made, are you still baking?

Yes, I use it as a therapeutic thing, it takes me back to that time when I was with my great-grandmother in the kitchen, and that whole idea of food being comfort. One of my regrets is not seeing my great grandmother before she died because once someone’s gone they’re gone. Thankfully her memory lives on through her baking and cooking.


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.


What Women Need To Know About Heart Disease

A heart attack can look very different for a woman than it does a man. As a national heart disease spokesperson, Shalini Suryanarayana wants women to know the warning signs.

When it comes to maintaining a healthy lifestyle, Shalini Suryanarayana does everything considered right. She eats a vegetarian diet, drinks alcohol only on occasion, doesn’t smoke, maintains an average weight, keeps active, and exercises regularly. In 2012 she was running a couple of miles every day, in training for a team event to raise money for breast cancer.

But when she was struck by a cardiac event that same year at the age of 47, the University of Vermont program director got many things wrong.

“I just wasn’t thinking very straight,” Suryanarayana says.

Heart disease is the leading cause of death in both men and women in the U.S., accounting for approximately one in four deaths nationwide. It can affect people of all ages and ethnicities and can strike with no warning and none of the associated risk factors like smoking, obesity, diabetes, high blood pressure, or depression.

But unlike the chest-clutching pain and squeezing sensation commonly associated with heart attack and cardiac events, symptoms in women can be much more subtle and diverse, sometimes manifesting as a shortness of breath, indigestion, back or jaw pain, fatigue, nausea, sweating, lightheadedness — all common symptoms a woman might easily attribute to more mundane conditions like menstruation, menopause, the flu, or just everyday stress.

In fact, to say a cardiac event “struck” would be an overstatement in many cases. Despite the life-threatening ramifications, cardiac events in women like Suryanarayana can more closely resemble a series of sudden but trivial discomforts.

Shalini and her dog, Budderball.

Despite the life-threatening ramifications, cardiac events in women can more closely resemble a series of sudden but trivial discomforts.

Consider Suryanarayana’s description of events. While out walking her Boston Terrier, Budderball, one day, she says, “I felt a little pressure on my chest, which made it feel like it was a little harder to breathe. But not a huge problem. It would come for a few seconds, and then be gone. Then later it happened again. The only time I had experienced that kind of shortness of breath is when I had an allergic reaction to a medication, so I thought I must be having an allergic reaction to something. I wasn’t worried about it. I just thought, Oh, I’ll go to the doctor sometime next week.”

“But then the next morning, first thing in the morning when I opened my eyes, I woke up experiencing that same shortness of breath and pressure on the chest.”

What Suryanarayana didn’t know at the time was that her heart was struggling to pump blood through an artery that was more than 90-percent blocked. She estimates she experienced, and subsequently dismissed, symptoms for a good 18 hours. But, she admits, “it might have been more than that. Because my symptoms were so mild, I might not have even noticed it.”

Despite a long family history of heart disease, it took the prodding of two loved ones that next morning to persuade Suryanarayana to go to the ER. “I was like, ‘No, I have to do a presentation for work, and I’m supposed to leave in two hours,’” she says. But rather than inconvenience anyone, she insisted on driving herself.

“My poor brother. He was frantically trying to give me a ride, but I wouldn’t wait for him,” she says. “That was a terrible, terrible decision. I put a lot of people at risk if something had happened to me on the way.”

Suryanarayana’s doubts and absence of urgency toward the situation continued unabated at the hospital. Because the pressure she was experiencing inside her chest didn’t hurt per se, she was reluctant — despite the insistence of her brother, who is also a doctor — to term the feeling “pain.”

“I get there, and I’m checking in like normal, and they’re asking me about my symptoms,” she says, “and I said, ‘I guess some people might call them chest pains.’”

They’re asking me about my symptoms, and I said, ‘I guess some people might call them chest pains.’

“I’d barely said the words ‘chest pains,’ and boom! Everybody flew into action. They had people just swirling all around me. And thank God they did.”

Surgeons placed a stent to reopen the artery that had been blocked to allow Suryanarayana’s blood flow to return to normal. “Had I made a different choice at any point in the line, had there not been an experienced person in the ER, my story could’ve been very different,” she says.

Suryanarayana and Budderball have since appeared in local and national heart disease awareness campaigns, and Suryanarayana served as an American Heart Association 2016 Go Red for Women spokesperson, sharing her experiences and encouraging women around the country to take a proactive approach to their heart health through regular Well-Woman Visit check-ups. (Sadly Budderball passed away this past December.)

Now a Go Red for Women ambassador, Suryanarayana here discusses with Folks the crucial role genetics plays in one’s health story, how women in particular can balance vigilance with paranoia with conditions like heart disease, and how sharing her story on a national scale helped her overcome the embarrassment she’d originally felt about her condition.

“Had I made a different choice at any point in the line, had there not been an experienced person in the ER, my story could’ve been very different.”


Your mother is one of the first women in your immediate family to live past the age of 45. Is that where a family predilection for heart disease lies?

You know, I don’t know too many of the details. I just know that the women in my mom’s family — several of the people closest to her —all died at about the same time. I remember when I was young when my mom’s birthday — that birthday — came up, she cried a lot. She lost her mother at that age and her sister at that age. It was a powerful day for her. That really stuck with me.

Years later, when I passed 45, it clicked. I remembered that. Not long after that, I had to get the stent. So it really did seem like that [age] was a marker.

Was there any particular culprit that you knew of that affected the women in your family that way?

It’s straight-out genetics. And it turns out it’s not just the women in my mom’s family. Pretty much 100% of the men have had cardiovascular issues. Diabetes and heart disease is just rampant on my mom’s side of the family.

By the time it hit my brother and me, we were both pretty young. But in both our cases, they caught it early and did something proactive. After that our health was actually better than it had been prior. I didn’t have tissue damage because I didn’t actually have a heart attack — I had what’s called a “cardiac event.” It’s sort of the precursor. So once the stent was in, that blood flow was much better. A few months after my event [and stent placement], they measured my ejection fraction [the percentage of blood pumping out of the heart], and it was the same as someone who had never had any issue. We’ve all got something, and in a way I’m lucky because I found out what my something is.

The hours leading up to getting a stent — how you dismissed your symptoms, how you had to be talked into going to the ER, how you kept insisting to the ER staff you were having an allergic reaction — it brings up a larger issue with women’s health. With the laundry list of symptoms that accompany, say, menstruation alone, women get so accustomed to feeling poorly and having to just ignore health issues and work through pain on a regular basis.

Exactly! And some of the other symptoms with heart disease, like lower back pain — women would rarely associate that with a heart problem. And an upset stomach. That could be anything. It’s different for everybody, so unfortunately there’s not a silver bullet or a magic checklist. For me personally, that shortness of breath feeling. I had none of the pain in my left arm like you hear for men. None of those really popular and well-known signs.

With the laundry list of symptoms that accompany menstruation alone, women get so accustomed to having to just ignore health issues…

So with heart disease and the way it manifests, how much do you think relates to how subtle heart attack or cardiac event symptoms can be for women, and how much to how women are accustomed and conditioned to having to just suck it up when it comes to illness?

I don’t know how much of one or the other, but I do know there’s not a woman I know who doesn’t have a pretty high tolerance for all kinds of inconvenient pain and issues for whatever reason, whether they’re trying to take care of their family or their job or whatever. I imagine that is a big driver for why women don’t hit the Pause button and try to figure out what’s going on with themselves. This notion of self-care, I think women struggle with that. We deserve better.

Now I’m so different, though, having had that event. I am so quick to drop everything now and check it out. I’ve not had anything serious since then. But I’ve also learned to get very comfortable with the idea that if it’s nothing, that’s cool. Much better to go to the doctor and find out I was mistaken and it’s nothing, than to not go and to find out I was mistaken and it’s something. I learned the lesson of picking your mistakes wisely.

So with such common heart disease symptoms, how is a woman supposed to tell the difference between warning signs and the usual being-alive issues that happen as a matter of course? How do you balance well-informed caution with outright paranoia?

One thing is knowing your family history, trying to figure out what you might be genetically predisposed to. So if you find out you do have a family history, then you know any of these kinds of symptoms you’ve got to take seriously. Then secondly, it’s being attentive enough to your body, really taking the time to know your body. So that upset stomach that you have? If you can’t attribute it to something you ate, or you don’t have upset stomachs frequently, make a mental note that that’s the first sign. Then that should heighten your vigilance to note any other symptoms. Because it’s usually that combination that would confirm [a diagnosis]. It’s either an extreme version of any one of these [issues] or a combination of them that should set off the red flags.

If you could go back now and talk to yourself back when you were having the cardiac symptoms, what would you tell yourself?

I would’ve taken it a lot more seriously. I really thought I could outrun my genetics just by being careful in all these other ways [like diet and exercise]. I didn’t really understand what that meant, how your body can be wired so that, no matter what you do, certain things might still happen. And I would’ve let someone drive me!

I really thought I could outrun my genetics just by being careful in all these other ways [like diet and exercise].

It can be difficult for people to talk about their health conditions, even among loved ones and friends. Why did you decide to go public the way that you have with yours?

Well, I really didn’t want to. In fact, when they first asked me about it, I thanked them and politely declined. I was in the hospital recovering from the procedure, getting ready to check out, and [the vice president of the hospital] said, “We’ve heard you have a really good attitude. We’re doing this billboard campaign for heart health.”


They said, to date, all the photographs and the billboards had been of older, overweight, white males. He said, “We really want to showcase that heart disease can affect anyone. It would be helpful to have a woman, a person of color, someone who looks younger.” And I said no. I was kind of embarrassed. I felt like, I have this thing that’s wrong with me. Why would I want to broadcast it to the world?

So my brother — he knows me pretty well — he said, “What if you get some woman to go get her heart checked out because she sees that poster and says, ‘Wow, that could be me’?” And I thought, He’s right. It’s really not about me. I shouldn’t get all weirded out and embarrassed about my own situation. Maybe it would help somebody else. So I called that guy back and said, “I’ll do it. But I’m embarrassed about this photo shoot idea, and I have this really cute dog, so if I could bring my dog with me…”

Before you became an American Heart Association Go Red for Women spokesperson and ambassador, was public speaking something you were interested in or comfortable with?

I love speaking extemporaneously. In my work I often have to do presentations, so I was very comfortable with the idea of talking. [But] I’m much more nervous about my speaking engagements for the Heart Association than I am about others. With heart disease, I’m knowledgeable about my own situation, but I don’t feel like an expert in a global sense. I try really hard to make it clear to people that I’m not a medical person, and it’s different for everyone.

This notion of self-care, I think women struggle with that. We deserve better.

And I have to say — I started out by not wanting to speak or to let this be known that I have this issue. [But] after my first two presentations, it was so cathartic. It was like therapy for me to be able to talk about it. Every speech I gave, every time I talked about it, I got more and more comfortable. My first perception was that there is something wrong with me, and as time went on, I realized there is absolutely nothing wrong with me. We all have things. The human body works a certain way, and some things work better in some people than others. It’s not something that you can control in and of itself. Once you know about it, you can do your best to shape the way it progresses. By making good choices, I very likely bought myself a lot of time, and, I think, because my body was stronger, I was able to handle the procedure and recover quickly. But that helped me so much, having accepted that role and learning to talk about it with people. It made me feel much more comfortable with my own situation and with trying to help other people not feel embarrassed or shy about their situation.


Holding Her Heart In Her Hands

Jen Hyde finds creative inspiration in the people and stories hidden behind the technology that keeps her heart condition in check.

The origins of the bioprosthetic pulmonary valve inside Brooklyn poet/visual artist Jen Hyde’s chest are well documented: when the valve was manufactured, the source of its metals, the identity and provenance of the cow who provided biological tissue, the names of those whose hands sewed the valve, who supervised its sewing, who approved its completion. Embedded deep in the heart of a database, the valve’s creation story is easily read.

But there are more stories surrounding this small piece of tissue and technology than can be found in a computer system. Namely, those of the technicians (often immigrant women) who create such valves, and those of the patients that rely on them. Inspired by these hidden stories, Hyde is developing two creative research projects that explore these larger narratives: a book-length lyric essay deconstructing the patient experience of people like herself, and an experimental documentary highlighting the immigrant and refugee stories that form the backbone of California’s vast biomedical technology industry.

Hyde was born with Tetralogy of Fallot, a rare congenital heart condition characterized by four simultaneous structural defects, including an under-developed or impaired pulmonary valve. These anomalies impede the heart’s ability to supply sufficient oxygen-rich blood to the rest of the body.


Jen Hyde.

Hyde had open-heart surgery to treat the condition just before her third birthday. Doctors warned Hyde’s parents that she still “might not be the most active child,” but that she was, for all intents and purposes, “fixed.”

“There wasn’t a whole lot of understanding until recently of how to help a young child born with Tetralogy of Fallot take preventative measures,” Hyde says. “The surgeons reassured my parents that I would have, you know, a ‘normal, happy life.’”

And as far as Hyde was aware growing up, she did. Her childhood in California’s Orange County was punctuated by dance classes, a bit of cheerleading, and annual visits to the cardiologist. She wasn’t especially active in sports, but she wasn’t especially interested in them either.

Once she struck out on her own, however, the regularity of her medical appointments diminished. Hyde would see a doctor now and then at her mother’s prompting, but throughout her undergraduate studies and 2007 graduation into a recession (three years before the Affordable Care Act), she, like most other early-twentysomethings, had higher priorities to concern her.

“I was a temp at a consulting firm. I was a Creative Writing major. I was trying to be a creative person living in New York City. Health insurance was just not that important at that point in time,” she says.

Besides, “I was under the impression that I was fixed. I had the surgery so long ago, I just considered myself a normal person. I didn’t think about the necessity of having regular cardiac care.“

Hyde had no negative health indicators or symptoms that she’d noticed to suggest otherwise. While living and teaching in China’s Sichuan province for six months, she traveled regularly and hiked in the Himalayas without incident. What tiredness she felt when she returned to New York for graduate school she chalked up to, well, graduate school. “That’s just how people felt [in graduate school],” she says. “Under-slept and over-read.”

During winter break after Hyde’s first semester, her mother suggested a checkup with the cardiologist. By then Hyde was 25 and back on her parents’ health insurance plan. “It turned out I was about six months out from heart failure,” she says.

Hyde was diagnosed with severe pulmonary hypertension, a form of high blood pressure that restricts blood flow from the heart to the lungs. The following summer, she had her second open-heart surgery, during which doctors inserted the bovine heart valve. The valve should last between 10 and 20 years before needing replacement.

It wasn’t until five years later, however, in early 2015, that a bit of curiosity led Hyde to discover that her heart valve, the exact one inside her chest, had been manufactured less than 20 miles from where she’d grown up. And that she could meet the technicians who’d made it — women (as it turned out) whose existence she’d never considered before.

These women, Hyde discovered, were both brand new to her and yet somehow familiar. Each one had her own unique story of how she’d come to manufacture heart valves — some of which, Hyde says, involved war and upheaval. But like Hyde’s mother, many of the women are immigrants and Asian-American. Hyde even discovered a parallel between her mother’s former occupation as a seamstress in the textile industry and how these technicians sew each heart valve by hand.


Jen at the beach.

“It was so powerful to meet the women,” she says. “All of a sudden I felt like there were all these connections.”

Hyde, who teaches expository writing at New York University, originally conceived of a single text-based project weaving the stories of these women technicians together with those of patients that depend on their work. But she has since decided to untangle the two threads. By using film and sound instead of text, Hyde hopes to better represent the women, letting their work and selves — too often neither seen nor heard — shine through more directly. The film traces the history of biomedical technology and manufacturing from Silicon Valley to Southern California and how it intersects with “what mobility, freedom, happiness, and joy look like” to the immigrant labor experience of its assembly workers.

Hyde’s other, related project is a book in the style of memoir that explores, through a kind of poetic collage, what it means, she says, to literally “be the body of new medical research.” Using a hybrid of poetry and essay, personal experience and research, she turns questions of identity similar to those she’d had for the heart valve technicians onto herself, seeking to examine the histories and power dynamics inherent in the healthcare system and to “redefine the illness narrative,” especially as it relates to the seemingly “fixed” Tetralogy of Fallot patient for whom medical remedies are only ever temporary.

Through both projects, Hyde, now 30, strives to reveal that which is hidden, a goal that aligns well with her health advocacy work as an American Heart Association Heart Valve Ambassador.

This past summer, AHA published an essay of Hyde’s in their journal for clinicians, which placed the patient health experience in context of the financial realities inextricably entwined with it (like having to choose between groceries and medical tests). As with the subjects of her creative projects, Hyde says these are conversations too often left unsaid.


Jen poses with her fiancee.

“It takes a certain amount of shame for somebody in the position of the patient — who already feels vulnerable about the condition they have — to look at the expert and say, ‘I can’t afford this,’” she says. She hopes doctors, as a practice, will become more empathetic and proactive about addressing such realities, but until then, Hyde says, it’s up to the patient to make their voice and story heard.

“I really advocate for cultivating a better sense that it’s not about shame, but a necessity to advocate for yourself and explain the position that you’re in,” she says. “To understand that that’s important, and there’s nothing bad or shameful about it.”

Hyde’s first book, Hua Shi Hua (华画诗) Drawings & Poems from China, a collection of poems and generative translations written during her year living and working in Shanghai, will be published by Ahsahta Press in January 2017.