Heart Disease

What No One Tells You About Going Under

After anesthesia and open heart surgery, it's common to experience memory loss. But that doesn't make it any easier to deal with.

I never saw a stick of butter I didn’t love, or a steak I could pass up. My idea of exercise is getting up from my desk about 4 and taking a stroll around the block with the dogs to air out the kinks in my long over-stressed body. I work, and work hard, as a writer: I’ve written 36 books and countless magazine articles, mostly about food.

Not so surprisingly, some of those choices have caught up with me. Last March, I had open heart surgery, and was under anesthesia for more than 6 hours, while the docs scoured out the remains of almost eight decades of indulgent living.

In the weeks following the surgery,  I noticed some dramatic changes. People would come to visit in the hospital and I had only the dimmest memory of their faces. I couldn’t remember their names. And when I went to rehab, I couldn’t keep the schedule straight. I would go on the wrong day,  or the wrong hour, or the wrong week, no matter how rigorously I wrote the appointments on my calendar.

The worst moment was: once I got the green light to drive again, I jumped in the car and took off. But despite the fact I’ve made that drive thousands of times, I got lost en route to the store. I ended up pulling off to the side of the road and crying.

That, more than anything, made me realize that since my surgery, I had some pretty big holes in my memory. My friends had been telling me that I repeat myself a lot, but now it really sank in that this wasn’t just forgetfulness: it was something related to having been put under for surgery.

When I consulted my doctor about my post-surgery memory loss, he was quite calm about it. “Just give it time,” he said. “Your memory will come back. Your brain needs time to heal.” My cardiologists also say that a “flaky memory” is perfectly normal.

Just give it time,” he said. “Your memory will come back. Your brain needs time to heal.”

My heart was stopped over 14 months ago. That’s a big chunk of the time I, as a nearly 80-year-old woman, likely have left. How much more time do I have to give?

One day, after trying to find directions to the store, I broke down in my living room, alone except for my sweet dogs, who stared into my tear-streaked face with beseeching looks. When I recovered, I got angry: I decided I was going to sue the doctor who had put me under. He must have made a mistake.

But when I hit the internet, looking for personal injury lawyers, I discovered that it was completely predictable–common, even—to suffer memory loss after long periods of anesthesia. And while I may only have a dim memory of signing a consent form before surgery, this possibility is laid out there, so I likely didn’t have a case.

I discovered that it was completely predictable–common, even–to suffer memory loss after long periods of anesthesia.

Since then, I’ve been thinking of my mother a lot lately. Like all of my female forebears, she too suffered from high blood pressure, and ultimately died from a heart-related ‘incident.’ (Don’t you just love the use of that saccharine word – incident? Why don’t they call it what it is? An effin’ train wreck.)

My mom had a hard life. After my father came home from the war, racked by night terrors and permanently disabled, she cared for him for the next twenty years, despite her own health complaints. But her generation knew how to get through tough times.  As she said to me often when I was a child: just go to your room and don’t come out until you have a smile on your face.

Now, nearly 80, I’m finally trying to assume her same sense of poise and optimism, in the face of my own memory loss. I try to buck up, look at the bright side, and not kick every stone in my path. My life may be harder, and more frustrating than it once was: but I’m still alive, to take care of my dogs, enjoy my children’s success, and take pleasure from my friends.

And maybe, if I’m patient and live long enough, my doctors will eventually be proved right, and my brain will finally get the time it needs to heal.

Cancer Heart Disease

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.

Heart Disease

The Mom Who Refused To Give Up

When Kaylee Mynot was born with pulmonary hypertension, doctors said there was no cure, and she would die before she was five. For her mum, Kaye, that just wasn't good enough.

It’s Caregiver Week on Folks! This week, we’ll be telling stories about the people who provide physical and emotional care for the people they love most. Learn what PillPack can do to help caregivers here.

A pair of foil balloons–a one, and a seven–bob at the end of of the table in Kaylee Mynot’s South London home. It’s her birthday weekend, and Kaylee has just turned seventeen.

Small and pale, with delicate features and long brown hair tied back in a ponytail, Kaylee doesn’t look her age, but despite her childlike appearance, Kaylee is poised and articulate. She flashes a grin at me from across the table, revealing silver braces. I’ve just asked her if she thinks living with a condition gives her any advantages.

Kaylee on her 17th birthday.

“Um, yes!”, she exclaims, raising a small white hand in a flourish. “I jump all the queues, especially if I’m in my wheelchair. I got to make a wish once, I went to central London in a limo and went to Rainforest Cafe. I met [pop group] Girls Aloud, and went back home in a limo.”

Kaylee’s mum, Kaye, is sitting beside her, drinking a cup of tea. She’s a stylish, older version of Kaylee, with a smile that’s a little more guarded than her daughter’s. She reminds her daughter to eat. “She’s talking too much,” she explains to me. “She forgets to eat.” Kaylee obediently winds noodles around a fork. Noodles are one of the few foods she can stomach, along with chicken, mashed potato and carrots. Sometimes she’ll have green beans. Meals are repetitive in Kaylee’s house.

The pair don’t argue much, but they agree food is a contentious subject. Food has been a problem that dates back to Kaylee’s babyhood, when she couldn’t keep anything down. For Kaye, it was a flashing neon sign telling her something was seriously wrong. The health professionals she spoke to brushed off her concerns, and by the time her daughter was eleven months old, Kaye was tired of Kaylee’s problems being dismissed as “failure to thrive”.

“I went to the doctor one day and said, ‘I’m not leaving until you find out what’s wrong’.”

“I went to the doctor one day and said, ‘I’m not leaving until you find out what’s wrong’.”

The doctor sighed, and to humor Kaye, did an oxygen test. The sixty-eight percent reading was so critically low the doctor assumed the machine was broken. When a second machine gave the same reading, Kaylee was blue lighted to hospital, where tests flagged up a congenital heart defect, intestinal malrotation and pulmonary hypertension, high blood pressure in the lungs. Kaye was told her daughter might live to be five.

“I came home and thought, this isn’t it. It can’t be. I started Googling.” Kaye found a pulmonary hypertension specialist at Great Ormond Street Hospital and managed to get her daughter transferred into her care. Baby Kaylee became one of the youngest candidate for Bosentan, a drug which was being trialled on adults to slow progression of the disease. It worked, and sixteen years later Kaylee is alive and kicking – and still using the drug.

When I ask Kaylee what she thinks of that initial diagnosis, the confident teen disappears and she stumbles a little.

“Um. I don’t know. I think it’s amazing. I don’t know how mum did it.”

Kaylee is a talented photographer. Here’s a macroshot of her mum’s eye.

Kaye is team leader, coach, and head organizer. She has a plan, and if that doesn’t work, she’ll come up with a back-up. “We have options. If you can’t find the good in something then what are you doing in this world? That goes for everybody. You need to have nice things to look forward to. Yes, plans change, but you just find another way.”

“If you can’t find the good in something then what are you doing in this world?”

The first thing Kaye decided was that her daughter would have as normal an upbringing as possible. So like many other London children, Kaylee danced, rode, swam and trampolined her way through childhood. The difference was, her mum would cart an oxygen tank along. “She did all the normal stuff kids do, we’d just do it slower or find a different way. We’d go to soft play [an indoor play centre] and I’d have to go climbing up into the play area with oxygen when she got stuck at the top and felt unwell.”

These days, Kaylee is careful to not push herself too hard. If she doesn’t get enough oxygen she suffers debilitating headaches, and experiences numbness in her hands and legs. She walks – slowly – to the shops with her friends, watches fashion YouTubers and takes photos. She’s studying photography at school and loves to take macro shots, like close ups of a leaf, detailing its veins. At school, she stands in the quiet dark room and develops prints, the old-school way.

Kaylee’s had a bumpy ride through high school. Her peers quickly noticed the smaller than-average girl couldn’t carry her own bag, and left lessons five minutes early to avoid the crush of students hurrying between classes. Kaylee also spent her free time in “base”, a common room for students with special educational needs, and had to leave school frequently for her regular medical appointments. She might as well have walked around with a sign over her head saying “I’m different”, she says.

“Once [other students] know you’re from base, and they saw I left early, got my bag carried, they formed their own opinions. I was just a different animal, and they never wanted to talk to me.”

When they did talk to her, it was to call her “slow”, or to make fun of her small stature. In the last couple of years students in the years below Kaylee at school have begun to comment, which stands out to the senior as particularly unfair.

She’s armed herself with a few tactics to shut down questions and comments. “I’m very outspoken, I’m not afraid to say something. When people ask me why I had my bag carried I would say, ‘because I’m special, unlike you’. Or I’d just tell them to go away.”

“I look scary on paper, but I’m fine in real life.”

“I look scary on paper, but I’m fine in real life,” she says, explaining her frustration at being left out of peer groups.

Now, she has a small but close group of friends. If she ever moves out of home, it’ll be with her best friend, Chloe, she says. Chloe isn’t from base, but like Kaylee she’s on the periphery of school life, and the two became friends after Kaylee noticed her sitting alone on the edge of the schoolyard each day, watching the other students.

Kaylee and Chloe dream of living in a mansion with a white living room. Fantasy mansions don’t come cheap, and Kaylee will need to find a job. As long as she can remember, she’s wanted to be a nurse. But as she’s grown older and her condition has come into sharper focus, the dream is starting to look unlikely.

When she grows up, Kaylee wants to be a nurse.

“Nurses work long hours, they’re on their feet all day,” Kaye says. “We’ve had to change things as we go along.”

Now, she’s thinking about working in childcare. Teaching life skills to children with disabilities, or maybe caring for preschoolers. Her older sister has two small children, and Kaylee loves spending time with them.

Whatever she chooses to do, with an array of medicines, an oxygen tank and other medical equipment to cart around, Kaylee will need to study close to home. “It’s too hard to stay elsewhere away overnight, too much for others to deal with,” Kaylee says.

As well as her older sister, Kaylee has a younger brother and a large extended family. Although Kaye and her husband split up a few years ago, they’re still friends, and eat together each week. Other weeknights are spent with cousins, grandparents, aunts and uncles. The family sound supportive and protective of Kaylee. Her sister has told her that if Kaylee ever wants to have children, she’ll carry them for her.

Kaylee doesn’t take this love and unconditional support for granted. Her greatest fear is losing the people she loves, she tells me. Her long-term prognosis is also a concern. There’s no cure for pulmonary hypertension, and while medication’s doing a good job at keeping her symptoms at bay, there’s no knowing what the future holds.

“Mum’s not going to be around forever. And, there’s the thought that I’m supposed to outlive her. I hope the technology gets better and I can carry on.”

“You will if I’ve got anything to do with it, babe,” her mum says firmly. “We’ll always have a plan, that’s just what mums do.”

Heart Disease

The Frog Inside Her Chest

Rose Young makes tiny sculptures of food. It's the kind of work that requires intense attention to detail... all while a congenital heart defect wreaks havok in her chest.

Rose Young had her first cardiac arrest when she was twelve years old. Now, at 28, she’s had too many to count.

That first time, her heart stopped for fifteen minutes. It took around seven defibrillator shocks to bring her back to life, and she was in a coma for a week. When she woke up, she had no memory of what had happened.

In March this year, Rose did a radio interview about her heart, her life, and her work. It was the first time she’d spoken publicly about what her “bad days” look like, and she found doing so excruciating.

“I feel so vulnerable, even listening to it again now. I hear myself crying, and I cry, again. At myself crying! It’s just really tough to hear.”

Rose has been diagnosed with “abnormal electrical activity”–an adult congenital heart defect–and a prolapsed mitral heart valve.  She has a defibrillator inside her chest; her third one since that first arrest at age twelve. The defibrillator “kicks” her heart whenever it might be going to stop.

“It feels like if someone was to kick you in the upper left chest from the front and in your shoulder blade with a steelcap boot on… to someone else it would look like I was getting punched from the inside.”

“I have irregular heartbeats all day long,” she says. “Even if I get upset emotionally, my heart beats differently. I feel it all day, every day. I’d feel distress if I couldn’t feel it… My way of describing it is like I’ve got a frog, inside a sock, inside my chest, jumping around.”

My way of describing it is like I’ve got a frog, inside a sock, inside my chest, jumping around.

Rose also has fibromyalgia, a condition that causes widespread pain throughout her body, migraines, and chronic fatigue syndrome.

“At my worst, I can’t shower. I can’t stand up because it’s too exhausting, and the pressure from the water hurts my skin,” she says. “Any position in bed is painful. My heart will beat so fast every time I stand up, that will be my physical activity for the day. I’ve had days when I’ve spent three to four hours laying on the bathroom floor because I can’t find the energy to walk to bed.”

“I don’t want people to see me like that, to remember me like that. That’s not me. That’s my illness, that’s not me.”

And most people don’t. Most people will know Rose for another thing entirely: her work as a sculptor. Rose makes tiny replicas of famous food.

Rose hard at work in her studio, making sculptures of miniature food.

Rose’s art is entirely unique, and has captured attention and delight nationwide. People travelled from all over the country to attend her first exhibition in September this year. The exhibition took eight months to put together. Rose creates the miniature replicas of actual meals out of polymer clay, using tools like toothbrushes and needles. Each dish takes between ten and fifteen hours to make, and fits entirely in a teaspoon.

“My pieces are what I call ‘nano’ sculptures. Very very tiny food. I am constantly doing things I can see an end to because I don’t know what tomorrow’s going to be like. With my sculptures, my favorite part of them is I can finish them.”

Rose has now made more than 100 sculptures. But why food?

“I think food is something that makes most people happy,” she explains. “It creates memories and gives comfort.. it’s something we share when we celebrate and when we commiserate.. To say a lot of thinking went into my decision to make food would be a complete lie though. I just love food. However at the time I started sculpting food I had just been put on a medication that made some foods taste dreadful, so maybe subconsciously I was sculpting things I missed eating, but probably not!”

Rose says she gets emails from people calling her “inspiring,” but that’s not how she feels.

“Since I’ve started showing people my art, I’ve had all of these messages that are like “You’re so inspiring, I’m so proud of you. It’s so cool that you’re doing something.” It’s patronizing, you know? I hate that word. I’m just doing what I can do. Just the same way that you’re doing what you can do.”

“I hate that word: inspiring. I’m just doing what I can do. Just the same way that you’re doing what you can do.”

Rose has had periods of her life when she worked full time, but the toll of on her health was high.

“I could work, but I’d just go to work, come home, and go to bed, because I’d be so wiped out. And what’s the point in that? I didn’t get to have any sort of life. I tried really hard to be “normal” and keep up with everyone else, for a long time. But I couldn’t. I accept that now.”

Rose says living with a chronic, invisible illness presents more challenges than a lot of people could ever imagine.

“Sometimes people ask me to give up my seat on the bus, and I’ve just had heart surgery the week before,” she says. “But they don’t know that. I look fine.”

A look at some of Rose’s sculptures.

“Something I bite my tongue with a lot is people’s recommendations of how I might get better. I’m chronically ill. I’m not going to get better. ‘Have you tried meditating and only drinking water from the west side of the island?’… Look, if there was something, I would have found it.”

She likens her body to a car she needs to keep working on: “You have this car that’s not working properly, and you’re constantly trying to fix things, to relearn things. That’s what living with chronic illness is like.”

Rose is unable to take many medications because of the affect they may have on her heart, so she has to find other ways of dealing with her pain. A lot of that means pacing herself, just like a race car.

“There are days for making tiny peas, and there are days for not making tiny peas,” she shrugs. “But people go crazy for tiny food. It’s great. It actually gives me a real boost and it makes me happy that I bring joy and humour to other people with what I do.”

Photos: Tim and Nadine Ellen. 

Heart Disease

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.

Heart Disease

Drawing Out The Weirdness

Illustrator Gillian Goerz credits her career as an illustrator to her "small, interesting hands."

Illustrator Gillian Goerz belts out Britney Spears at karaoke bars across Toronto, and she does it like it’s her job. In a way, it is. With a group of friends, Goerz has started “Camp Karaoke,” a regular goofy evening where she and her buds dress up like camp counselors vaguely in the style of Wet Hot American Summer. To spice things up, Goerz keeps an “embarrassingly long” list of about 60 karaoke songs in her phone.

“When you spend all day hunched over a desk, to sing at the top of your lungs is a great way to balance it,” she says. “It lets me scratch the performance itch, while not requiring me to be a professional actor.”

A woman of many interests, Goerz has found a way to monetize most of them. At the University of Saskatchewan, Goerz studied fine arts and drama (she confesses to being “a natural show-off.”). However, she eventually wrote off theatre as a career option. “In my mind, I may have shut the door to acting to some degree because I thought that—physically—I don’t add up to the standard Hollywood would require,” she says. “TV doesn’t allow for irregularities that sit out of a certain norm.”

gillian1 (1)

Gillian Goerz.

Born with a ventricular septal defect (a hole in her heart) that naturally closed after five years, Goerz very nearly died when she was born. She survived intact with relatively small, interesting hands.

Now a professional, independent illustrator whose hands are central to her identity and bank account, Goerz has worked with high-profile clients like Johnson & Johnson, The Walrus, Globe and Mail and the Canadian Encyclopedia. “I actually feel whatever physical irregularities I have going on have been an advantage for me,” she says. “My left hand is maybe not the most useful thing in the world. I have average-sized thumbs but short fingers, and it makes a better connection for pen holding. The pointer finger on a normal person is jacked up when they’re controlling a pen.”

After a pause, she adds, “This is a fictionalized history of my own body; it’s probably absolute bullshit. You have to mythologize your own body weirdnesses to make sense of them.”

You have to mythologize your own body weirdnesses to make sense of them.

Goerz sees the world in technicolor, often describing things as “magic.” With the straightforward and bold style of a cartoonist, she draws strong women with their sleeves rolled up, puffing on cigars. She captures the prismatic diversity of Toronto, with chilled out girl gangs and their own “body weirdnesses.” Thanks to her fine arts background, she depicts the soulful essence of faces with a complexity appealing to adults. But she also uses her arsenal of comics influences to be approachable and lively enough for children’s books.

In her childhood home, Goerz drew on a chalkboard that left a trail of chewed up drywall as her parents continually re-drilled it for each growth spurt. She read the confessional cartoonist Lynda Barry “at maybe way too young of an age.” Those weird, wonderful graphic novels expanded her worldview beyond the Betty and Veronica cartoons. (“These women have huge knockers,” Goerz deadpans. “Baking cookies and wearing more and more revealing outfits, that’s their technique to win a man—it’s enough to make you puke now.”) In contrast, Barry depicted ugly people and dark, revealing situations. “It was nice to see less than idealized images of human beings.”

In college, her fine arts major didn’t click at all. “I couldn’t stomach talking about my own art, and for better or worse, I’m a very practical person.” So Goerz spent time convincing herself she couldn’t make a living in the visual arts. She tried “the gamut of crappy jobs”: barista, social media and advertising copywriter, retailer at a clothing store, part-time actor. As a waitress, her arms would ache after a day of carrying trays because so much pressure balanced on her fingers. She quit without notice because she was in so much pain. “I’ll never be a physical labor person,” she says. “If friends are moving, I’ll help them clean their house, but most of the weight is on my fairly short fingers, and if I injure my fingers, it’s part of my job—I need to use my hands. So I need to protect them.”

Gillian Goerz's beautiful illustration work.

Gillian Goerz’s beautiful illustration work.

As a yoga studio assistant, she was uncomfortable taking advantage of one of the major perks of the job: yoga classes. “You had to plant your hands on the ground in a way I could never do,” she says. “If it’s a new teacher, do I have to say that the reason I can’t do that? Do I have to have that conversation in front of everyone in the class? … That’s one of the more exhausting aspects of any physical irregularity is having to constantly have that conversation or explain what, air-quote, ‘normal’ people can do.”

Finally, she connected the dots between her childhood love of cartoons and the potential for a job as an illustrator. Goerz went back to school to get her bachelor’s in illustration and design. Then, she met one of her heroes: Canadian graphic novelist Mariko Tamaki.

Tamaki was finishing a story that her usual collaborator was unavailable to illustrate. “She was able to hand off her script to me–an untested friend of a friend–to foster somebody new,” Goerz says. “That was pretty inspiring. It’s a glimpse into how somebody who is a creative success can be not a snob and funny and generous.”

As a result of the editorial bylines that Tamaki helped her snag, Goerz has leveled up in her career and spread her own generosity back to her hometown of Toronto. She’s illustrated badass women in Mothers of Confederation for the Canadian Encyclopedia to inject some fun into history, a subject that, to her, seemed boring growing up. And… drumroll… she just got grants from the Ontario and Toronto Arts Councils to write and draw her own YA graphic novel: Shirley Bones. The remake of Sherlock Holmes follows two nine-year-old girls as they traipse through the multicultural cityscape of Toronto, a place often neglected by pop culture at large. And she gets to rewrite the Betty and Veronica script of her youth.


Squeezed by the hand.

“There are themes of bravery, adventure and allowing yourself to do what you want to do with your life even if it conflicts with the external ideas in your world.” But above all, it’ll be funny. “Messages are better communicated through humor than anything else; you can be disarmed, and it can weasel its way into your brain.”

She’s fairly confident the manuscript will sell, “which is terrifying,” she says. “There’s a fear to see a pipedream materialize into reality.’” This summer, from her gritty studio (“It smells like garbage juice, but it’s worth it,” she says.), Goerz will overlook the dense dizziness of Chinatown and beyond to see a panoramic view of her beloved city. She’ll transform Toronto into an enchanted world for the rest of us, but the illustrator already sees it that way. “It’s grimy and awesome and not completely sanitized,” she says. “That’s its magic.”

With her career on the up and up, Goerz is moving into her first solo apartment as an adult. She plans on creating a bookshelf full of the Young Adult and sci-fi titles she loves, including Ray Bradbury, Isaac Asimov and J.R.R. Tolkien. Mostly, she plans to deck out her kitchen with herbs.

“I really do love to cook,” she says. “Last night, I made chicken with cilantro, salad broccoli bacon and tomatoes cooked in bacon fat and green onion avocado. I like a lot of weird salads. I like to take whatever’s in the house—I might like two or three different recipes and pull the inspiration and make up my own thing.”

This is one passion that she doesn’t want to turn into a career. “It doesn’t have any stakes. I’ve managed to monetize the things I love: drawing, karaoke. Cooking is something I don’t have interest in monetizing. You get to enjoy the rewards of it, and that’s it, and you can share it with friends.” We’ll see if that lasts for long.