Cancer Essays

The Dark Side of Facebook Support Groups

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

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

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

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

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

And then that woman told me to leave my husband.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Cancer Heart Disease Histories

Sick and Tired

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

These issues continue today.

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

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

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

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

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

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

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

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

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

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

Cancer Health & Fitness

To Beat Cancer, Talk To Your Family

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

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

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

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

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

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

What initially got you into this kind of work?

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

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

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

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

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

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

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

Carla Fisher

How does age and generation play into this?

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

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

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

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

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

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

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

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

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

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

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

This interview has been edited for length and clarity.

Cancer Essays

How To Reframe Your Life Goals After Illness

When illness strikes, it can be hard to get your life back on track. Here's some tips on how to embrace the new normal and pursue new, better goals.

When I was younger, I wrote out a 5 Year Plan. You may have done this, too: they’re widely considered a helpful tool to create a productive and workable vision of your future. The objective is to set your life on a course driven by design. I honestly believed my plan would serve as a framework that could guide me towards the theoretical end of my life, in my 80s or even 90s.

And then, suddenly in my mid-30s, I got sick. Seriously sick. Deathly sick, in fact.

In a flash, my whole life changed. Once the shock and awe of the situation came to fore, I realized I would need to re-calibrate the vision of my old, imagined future. I was working with the typical suggestions that most folks live by in 21st Century America: an up-rising career path, a house growing in value, a nice car every few years, a cushy vacation spot.

But none of that mattered anymore. None of it made sense.

Having a life-threatening illness altered everything. The 5 Year Plan immediately turned into something like a 5 Day Plan. Or, more truthfully, some days I could barely stay with a 5 Hour Plan.

Here’s how I changed the way I thought about my life goals–and got my life back on track–after diagnosis.

Accept the New Normal


After my illness, it took me months, even years, to begin the process of crafting a new path for myself. Letting go of my old understanding of life was excruciating at times.

While the concept of what a normal life means feels quaint, we tend to insist on returning to one after we get through challenging health crises. But after a health crisis, it can be impossible to return to ‘normal’, because you have become someone completely different from your past self: your life changed dramatically and unceremoniously in a way you didn’t foresee.

These expectations of returning to normality can hang like lodestones around your neck. Your past expectations of what your life should be are everywhere, haunting you: documents saved on your Google Drive, or scrawled on crumbly sheets of paper at the bottom of your desk drawer. Luckily, there are ways to retrain that silly brain to refocus.

One of the most effective ways for me was to stop myself from expecting tomorrow to be just like yesterday. It was to take a minute to pause, to go deeper into that moment, staying focused on the fact that, here I am! I am alive right now! The old normal might be gone, but the new one is here: no better, no worse, just different. Don’t give up on your dreams, just because things have changed.

Revisit Your Old Goals, And Create New Ones

Post-cancer, some of my old goals needed a serious overhaul. Others needed to be brought back to life.

Originally, I tried to just go back to work. And I did, for a time. But I wasn’t fully there mentally, no matter how I tried. While I knew that my colleagues gave me plenty of help and a wide berth, I never felt like being at the office working at a job I couldn’t focus on. It didn’t fully satisfy my innate strengths, and it made me feel powerless with my new conditions.

Eventually, I realized: maybe the old goal of continuing to advance on the career path I’d been locked into before I got sick wasn’t one that fit into my new reality. I needed to examine which previous goals were worth keeping. The ones worth keeping needed tweaking in a new frame. Some of the goals that lost weight in my world were typical ones. But the ones that were still alive, albeit dormant, were ready to be resuscitated.

I had always wanted to learn how to surf. I dabbled in the sport my whole life, but I never really had the chance to be taught. When I was well enough, I took that old goal, and went o learn how to surf with an incredible organization called Project Koru. The program and the experience empowered me. It changed my life for the better, and gave me fresh perspectives on the old vision of myself.

So seek out your old goals. Reread them from your new vantage point. Consider which of your goals still hold a power, and happiness, and peace that is raw to the touch. At the same time, consider new goals, things you’d always wanted to do, but were too locked into your old way of thinking to explore.

Author Mark Schoneveld surfing after his diagnosis.

Break Your Goals Into Smaller Pieces

Since I don’t live close to the ocean, I can’t go surfing every day. Instead, for daily exercise, I run. I haven’t completed a full run(yet), but they say “marathons are run one step at a time.”

Running keeps me healthy and strong. For me, it’s mostly a mental thing. When I feel like crap, when I don’t feel like doing it, that’s when it’s most potent. Just going outside for a short run makes me able to let go of the stress and fear because my body just says: “Okay, it’s run time. Shut the hell up, brain.”

Post-trauma life goals, like marathons and surfing, are best taken one step, one wave at a time. Illnesses can be so huge, so gargantuan. The war you’re fighting is multi-prong and complex and the only way to beat it is to break down your process into small, incremental steps.

To set up goals, start with the ones that are easy and doable. The ones that aren’t giant monsters. The ones you can say “oh, look at that, I made a small leap forward today!” You’ll feel better. Make it a habit. Nothing fancy or big, just a small thing.

For me, it was running. It became an easy habit. Making good habits both mentally and physically have improved my moods and my overall well being without a doubt. I hope it can do the same for you.

Evolve Your Support Network

Post-trauma health events are made elementally less stressful when you’ve got friends to give you support. Find those people.

When I started to finally get recalibrated, I started to make new friends, many of whom were struggling with their own illnesses. Many of them were folks who shared my diagnosis, and some even shared doctors and hospitals. They became people that I could speak with about what I was going through: people with a far deeper understanding of what it was like to have my condition than many of my existing friends and family members.

That’s not to say you shouldn’t allow yourself to lean on old friends. Many of them don’t know what the hell to do for you, but some of them will. And some of your old friends are the best ones to use as listeners. But some of my old friendships, inevitably, drifted away after my cancer diagnosis. At first, it bothered me, but then I realized: that was okay. Like some of my goals, they were part of the old normal, not the new one.

Remember Goals, Like Life, Should Always Be Changing

Filling out my 5 Year Goals probably a good thing for me to do at the time. It was nice to have them as a starting point, but I am happy that I learned that those goals, any goals, are just a concept… and like all concepts, they shouldn’t be static things. They should change as you do.

I used to get upset with myself about the goals I couldn’t reach. Now, I practice self-compassion, and look at my goals like the waves I surf: they morph and change fluidly with the tides, but no matter what they look like, I ride them just the same.

Cancer Profiles

Team Meleke and the Lung Force

After 15 years of misdiagnoses, Daphne Faitla-Rodriguez's mother Meleke died of stage 4 lung cancer. Her tragedy inspired an international movement seeking standards for better treatment.

Daphne Faitla-Rodriguez and her wife are sitting on an orange kayak in front of Australia’s famed Sydney Opera House, all smiles. Daphne is holding a white t-shirt with teal and black lettering. The shirt reads: Team Meleke, Lung Force, John 4:16. This simple shirt has become part of Daphne’s mission – a mission to use her voice because others can’t. She speaks locally and nationally about what she believes is the lack of education and awareness, even among doctors, when it comes to lung cancer. For Daphne, it’s personal.

Daphne Faitla-Rodriguez and the rest of her family.

When her mother Meleke was finally diagnosed with lung cancer, the 15 years of being misdiagnosed with allergies, sinus infections, or even arthritis were finally over, but it was too late – the cancer had metastasized throughout her entire body.  It was stage four and it was everywhere; cancer had taken over her sternum, liver, spine, thighs, stomach, and back, and it was creeping into her bones. The only place it hadn’t spread was to Meleke’s brain.

Daphe was heartbroken by the fatal diagnosis, and she began to educate herself about lung cancer, questioning why she knew so little. The more she read, the more shocked was by what she learned.

“There is only a two percent chance that anyone with lung cancer will go into remission,” she recalls. “It’s the number one cancer killer in America, and 46 percent of those diagnosed are non-smokers. It’s killing people at very aggressive rates; by the time someone is diagnosed, more than half are gone within the year.”

While she pondered how it was that lung cancer awareness was so lacking, yet information on other cancers flood the news and personal conversations, she had an “aha” moment.

“The strongest advocates are people who advocate for themselves.”

“The strongest advocates are people who advocate for themselves,” Daphne explains. “When you go through something, you understand how terrible it is and you become an advocate. When I looked closely at those numbers, I realized, what time do lung cancer patients have to go out and advocate? We don’t hear about it because it’s killing people so fast. By the time you get diagnosed, it kills you before you get to tell anybody. People with lung cancer don’t have the opportunity to become activists, so unless their friends and family become that voice, nobody will.”

Looking back, what’s frustrating to Daphne is not just the lack of public education and awareness, but the number of times the medical community got it wrong. For years, doctors refused to listen to Meleke’s requests for further testing, insisting that her symptoms were related to common conditions.

Meleke grew up in American Samoa, raising Daphne and her seven siblings on the small island of Aunu’u where they led an active life and ate off the land, growing most of their own produce and consuming fresh fish. Meleke was strong – she played rugby and climbed mango trees, but she always had a persistent cough even though she never smoked a cigarette.

Team Meleke’s Lung Force shirts have become a global phenomenon. Here’s two people posing with one in Russia.

As Meleke went to doctor after doctor and received improper diagnosis after improper diagnosis, her cough got worse and Daphne knew something was wrong. Perhaps, she thought, the doctors on the island weren’t as good as those in the states. So, when Daphne left American Samoa to join the marine corps, she sent her $3,000 signing bonus to her mom so she could travel to Arizona to see a specialist. The diagnosis? Allergies. And then upon a follow-up, bronchitis. Coming from a small island, they thought that all doctors in America were “top of the line,” and they believed the diagnosis. That was 2007. In 2008, Meleke began to travel back and forth to the states to see doctors because her cough was so bad they knew something was wrong, but she was repeatedly told she had pneumonia. In 2010, she moved to Arizona to live with Daphne’s older sister.

By 2014, Meleke was much worse, suffering from terrible back pain, and she returned to the doctor again. The newest diagnosis came back as arthritis. Meleke, finally fed up with diagnoses that did not seem to fit her symptoms, demanded a lung x-ray, believing she had lung cancer. Six months and multiple demands later, she received her scan and her diagnosis.

“When the doctor finally learned the true diagnosis, all he could say to my mom was ‘I’m sorry.'”

“For the past who knows how many years, my mom had been taking allergy medicine for lung cancer,” says Daphne. “When the doctor finally learned the true diagnosis, all he could say to my mom was ‘I’m sorry. Not only do you have cancer, but it’s Stage 4 and you have only six months to live.’”

“I was in complete shock. It was everywhere, throughout her entire body, and nobody found it. How crazy is it that the patient demands the scan and they find everywhere, except her head. HE was the doctor! This is what he does for a living; it’s not a hobby. He’s done this for the majority of his life and he had to wait for the patient to tell him what she had?”

“The system is terribly flawed.”

Meleke chose to fight, underwent chemo and radiation, and lived for another two years, beating the odds. During that time, Daphne focused her attention on her mother, and she began to learn everything she could about lung cancer. Before she became too sick to have meaningful conversations with her children, Meleke made a request of Daphne.

“My mom said, ‘I want you to tell people about this,’” Daphne recalls. “‘Go out and tell people. If you can share my story and save just one life, it will make all of my pain and suffering worth it.’”

Now Daphne is doing just that, and she won’t stop until things change. She’s made lung cancer awareness her mission, passionately stating that everyone, including doctors and politicians, need to learn more about this often misdiagnosed and fatal disease.

Shortly after her mom passed away, at the age of 56, Daphne took the first step by signing up for a lung cancer walk, and that fueled her passion. She began to look at the bigger picture, recognizing that it has to come from the top. If the government doesn’t provide the proper funding for research and education, then doctors will not be able to recognize the symptoms and order the proper tests to diagnose early. According to the American Lung Association, only 16 percent of lung cancer cases are diagnosed at an early stage, but if there was more knowledge and awareness, Daphne believes that more patients will survive.

“My mom said, ‘I want you to tell people about this…'”

Daphne has taken her advocacy to the state and national capital. She’s shared her mom’s story with district leaders, state representatives, and the staff of her senators, John McCain and Jeff Flake. Each time she told her mom’s story she became emotional, and they cried with her. For Daphne, that was powerful – she felt she got through to them. She would then voice her concerns that lack of funding and education are killing people unnecessarily.

“How is that our doctors – who are supposed to know everything, who are supposed to be able to detect these things – do not know,” Daphne questions. “Something I’d been taught in the marine corps is that if leaders don’t give their people the tools and resources necessary to do their job, then they are going to be unsuccessful. That is why it was extremely important for me to go to Capitol Hill. When all of these doctors can’t find it, I don’t think it’s their fault at this point. I think it’s the fault of our education system.”

“So, I went to our leaders to tell them that this isn’t just an issue in the state of Arizona, it’s flawed throughout the entire country. You are the leaders and you need to do something. You are the ones that need to provide our doctors around the country with the right tools and resources to fix people because you are the leaders.”

“When I look at it, how do you know something is wrong when you’ve never been taught how to find it? Or, you haven’t been given enough information to know how to find it? And I think that’s the issue with lung cancer right now – doctors just don’t know.”

Team Meleke at Niagra Falls.

When not speaking to politicians and leaders, she’s spreading her message locally, nationally and internationally.

Locally, Daphne is a leader for her security team at Palo Verde, the largest nuclear power plant in the United States. Before each shift begins, the leader will ask their group questions, and hers always focus on lung cancer. They learn important facts, such as lung cancer is the number one cancer killer, and it begins a conversation that she hopes continues in their homes and with their friends. She also serves as the emcee for the local Lung Force walk, kicking off the event and introducing the speakers.

Nationally and internationally, Daphne spreads the word with her Team Meleke t-shirts. The concept was created when she and her wife were kayaking in Sydney, and it went viral. While the goal was to spread awareness about lung cancer, she had no idea just how far it would go. She originally created the shirts to build awareness and then developed the Team Meleke Challenge, encouraging people to take the “coolest picture holding up the t-shirt.” But what happened next, surprised her. She began receiving photos from around the country and world with strangers wearing her shirt in Boston, Washington, on the mountains of Hawaii, Canada and even Russia and Germany. Family, friends and strangers people post pictures of themselves in their shirt to her Instagram account, @rodsquad13, spreading the awareness that Daphne believes is so lacking about this disease. The Team Meleke Challenge has become so popular that she began receiving requests for next year’s shirt before the current year was even close to over.  Daphne decided she will create a new t-shirt style every year so she can track how far and often her message is spread throughout the years.

Daphne is just getting started. In less than two years, her advocacy has been seen in the halls of Congress and on the streets of Europe, plus everywhere in between. As she continues to find new ways to help spread the word and increase education, she keeps her mother’s memory alive, doing what Meleke asked and hoping to save at least one more life.

Cancer Essays

Reconstructing Dad

After two bouts of cancer and two hit-and-runs, my dad is more active than ever... and teaching me new lessons about what it means to live life to its fullest.

Dad was in his seventies when I finally won a game of tennis against him. The win was bittersweet. In the past, eager for me to take up the sport, Dad let me have points; this time he didn’t, because he couldn’t afford to. His feet were not working like they used to. Neuropathy–a disease affecting the nerves–was slowing him down, and my win was overrun by the realization of how limited our interactions might soon become.

As an adult, Dad was always active. Because he was something of a social misfit, sports like tennis, skiing, and yoga gave him something to do with others that–unlike small talk–made him feel comfortable, and which he could excel at.

Before he became sick, the sport Dad loved best was skiing, but he soon gave it up when his feet started hurting from the cold. For similar reasons, he had to give up tennis shortly after my bittersweet win. Frustrated, he resorted to long swift walks, finding historic trails to explore. At first, I worried about him on these walks, but soon tucked away my fears of his mortality. I decided to take advantage of the time we had left, and do something we enjoyed together. We embarked on a camping trip like we had done when I still in high school.

Because he was something of a social misfit, sports like tennis, skiing, and yoga gave Dad something to do with others that–unlike small talk–made him feel comfortable.

When I was sixteen, Dad took me to the border between Minnesota and Canada to a string of lakes that he had camped at as a kid. There, I saw firsthand his love for canoeing, sleeping in a tent, and eating food cooked over a fire he had built himself. I remember, specifically, him telling me once about winning a canoeing award at summer camp when he was ten years old. As he told me the story, I could imagine my awkward, friendless father feeling like a champion with his paddle.  I’d never seen him seem so proud.

On that trip, Dad imparted to me the many ways in which camping can be empowering. My father seemed superhuman as he portaged over rocky hikes from lake to lake. We sung in the rain and laughed at our sore muscles while we lived in continuous motion, paddling, walking, setting up a tent, or making our food.

Our second camping trip, when he was seventy-five years old, felt different. I panicked each time he lifted the canoe, or took a moment to catch his breath. Instead of enjoying the gorgeous scenery as we glided along, my mind was working out the details of what I would do if he had a heart attack in the woods. I calmed down each time I spotted a road or a house on the horizon where I could run for help in case of emergency. I found the experience so stressful that, after it was over, I vowed that the only way we would ever go camping again was if I had a boyfriend who could go with us. (That hasn’t worked out yet.)

A couple of years after that trip, my Dad was diagnosed with bladder cancer. Since my parents were in Florida at the time, I called the hospital before he went into surgery in case it was the last time we would connect. Dad’s voice was filled with gravel and salt. He didn’t want to talk much, but I told him that I loved him and he had always been my hero. He perked up and wanted to hear more about that. I talked about the time he took to drive me to school, the ski hill, or out to California. I told him how he had given me a love of books, a memory for numbers, taken me sailing, and made sure I could swim. He soon got tired and I thought that goodbye might be the final one.

But Dad recovered, almost like new. He didn’t go swimming anymore, because he now had a urostomy bag, but he stayed active. One of my following visits, I asked if we could rent bikes. Mom joined in, and we had a terrific time roaming the quiet streets in the small Florida town where they’d settled. Shortly after, Dad took up biking as his main form of exercise and fun. He joined a bike group and started racing in local events. I felt proud of Dad’s resilience and silly that I had put his age and ailments in a box marked doom. Dad was thriving, happy as ever, and still living a physical life after not one but two diseases had almost put him in the ground.

I felt proud of Dad’s resilience and silly that I had put his age and ailments in a box marked doom.

Then I got a call.

“Dad had an accident,” my mother told me over the phone.

A car hit my father while he was running an errand on his bike; the driver fled the scene. I couldn’t imagine who would leave an eighty-year-old guy lying on the ground, but somehow, Dad got to the hospital. He was lucky: aside from bruises, he escaped with only a few broken bones in his arms.

The accident couldn’t deter him from getting back on his bike once he was healed. Even after his hit-and-run he’d bike as much as 20 miles a day, and seemed to enjoy pushing himself. His resilience inspired me. I, too, took up biking in the city again, and decided that if my Dad wasn’t going to let preconceived notions of what he was capable of get in the way of doing bike races as a cancer survivor at age 86, I shouldn’t be afraid to go back to school as an older student.

As I get older myself, Dad’s taught me that aging isn’t anything to be scared of.

It was around this time that I started to feel like I really understood my father. Before, I had always viewed my father as the quiet, loner type. Now, I realized that for Dad, staying active was a path to empowerment. He always said that he only wanted to stay alive if he was active and healthy: he never wanted to feel confined. His illness and accident showed me how he was more of a hero than I had imagined. Nothing–not neuropathy, not cancer, not even a hit-and-run–could slow him down.

And nothing did. Shortly after his first hit-and-run, there was a second cancer: a slow-growing multiple myeloma–a cancer of the white blood cells. He went on pills for it, and got back to his hobbies. Then, unbelievably, there was the second hit-and-run. This time, Dad was just standing at a newsstand: a truck somehow backed into him, then fled the area. This time, Dad didn’t even bother going to the hospital. He just drove to Wal-Mart, picked up a couple of canes, and in a couple of weeks, was back to his 20-mile bike.

I feel stronger, knowing this is my father. Sometimes, when I think about all I have learned about him in the last few years, I feel awed: far from being the awkward outcast I mistakenly believed him to be most of my life, he’s a living example of not allowing age, or illness, or anything else define you. True, a part of me worries about him, and wants to wrap him in an anti-aging cloak and keep him here forever. But as I get older myself, Dad’s taught me that aging isn’t anything to be scared of. In fact, it doesn’t have to mean anything at all… unless you let it. No matter how old or how sick, you become, the world will always be full of moments to enjoy, and challenges to take pleasure in overcoming.

Cancer Essays

Out of Body

Getting breast cancer felt like being cheated on: even after it was over, as with many infidelities, it took me a while to learn to love my body again.

Until I was diagnosed with Stage IV inflammatory breast cancer, I didn’t think much about my body. I relied on it, of course, and I took care of it (exercise, green leafy vegetables, triple chocolate brownies). And it took care of me, until it didn’t. Most of us operate that way, I think. It’s almost an automatic response. Wake up, brush teeth, put one foot in front of the other, make breakfast. Until you can’t. Until one day your eyes open and your body doesn’t cooperate. Until you can barely sit up in bed, much less get to the toothbrush or the kitchen.

Laura at her son Roman’s second birthday party, taken during treatment.

And that was the biggest shock of all. When I heard the word cancer, I thought of chemo, bald heads, vomit, and exhaustion. I didn’t think I would lose my physical being—the part of me that loved to dance, play tennis, jump into a swimming pool, hold hands. I hugged with abandoned.

But as I started treatment, I retreated. It started with the PICC line, making sure no one got near my right arm. And when I got a chest port put in, any form of hug became incomprehensible. I didn’t want anyone to touch me. Everything hurt. A nod, a hand squeeze, a wink became my preferred way of communication. As the chemo drugs did their thing, my mouth and my eyes and even my balance were foreign to me. Sometimes even talking was just too exhausting. I became fearful of my body, of what it was doing to me and what people were doing to it.

It’s not just the treatment itself that seizes your physical body; it is the lack of movement from being in treatment. I woke up every day feeling like a stranger. Where was the strong body that had carried two babies and delivered them without a hitch? Where was the body that had run through the hills, walked thousands of miles in cities around the world, and that had breathed in and out without me even thinking about it?

I would sit on a park bench and just watch people move: walk a dog, throw a Frisbee, catch a ball. I ached for my old body.

Suddenly I could barely walk. The trek through the hospital halls to the parking lot felt like a marathon. Traveling for treatment I relied on wheelchairs in the airport to get me to the boarding gate. My soul resisted these changes. I yearned for the ability to move my body in ways that were joyous and positive. I would sit on a park bench and just watch people move: walk a dog, throw a Frisbee, catch a ball. I ached for my old body. I wanted to sink in a pool of water and float for hours. I wanted to sit in a swing with the kids and spin until we were dizzy. But instead I sat in my bed, stuck in a cycle of vertigo and nausea; I swam in visions of darkness and death. I watched the rain drip from the leaves outside, or the sun create shadows on the house next door, listened to a dog bark down the street. I was motionless. My physical being was gone, lost in a swirl of IV lines, medication bottles, needles.

So while I was trapped in stillness, I decided to watch the physicality of others. My mom bought two tickets to a Cirque du Soleil performance. I hobbled into the theater, my mom holding my arm, and we settled into our seats. The performance began and I sat still, staring at the performers. Their ease in movement, in flight, in motion, and bodies that did what they told them to do—it left me breathless. What must it feel like to wake up in a body that moves so easily. I wanted to touch the acrobats, to feel their muscles, to feel the blood running through their veins, to feel and absorb the life I saw in them. I wanted a body that reacted to touch, that craved sensation. My body had become a pincushion, a way in for medication, a thing to be healed. A body that other people talked about in front of as if I weren’t even there.

I cherish my body, this body that put up the best fight against cancer.

But seeing that performance sparked something in me. Something that made me move a little more, made me forgive my body a bit, too. I walked a little more each day, to the mailbox and beyond it. After the first surgery I made it up and down the wide hospital hallway on the second day, clutching my IV pole. Then more walks: past the marsh with my sister; down a city street with the kids to get ice cream; with my friends to see the ocean. Slowly, slowly, the energy returned. My being returned: I remember the first time I danced (a tango class with my husband for Valentine’s Day), and my first hike up a hill.

The contrast of the before and after is profound. I cherish my body, this body that put up the best fight against cancer. This body that came back to me, a little worse for wear but still here.  I move it every day in countless ways, and even dance in my sleep, sometimes. Finally, the physical me matches the mental me. I am whole again.

Creative Commons photo by Louish Pixel.

Neurological & Cognitive Disorders Profiles

The Art Of Coping With Brain Injury

Dutch artist Tom Heerschop aspired to be the greatest artist since Leonardo Da Vinci. Then he developed a brain tumor the size of a sweet potato.

In 2008, Amsterdam-based artist Tom Heerschop was in his kitchen on his son’s sixth birthday, about to cut the cake, when he felt a violent pressure in his head. “My head felt like a train was arriving, and I had to catch that train,” Heerschop says. “I ran downstairs. I heard strange sounds and smelled strange smells. I thought I’d gone completely crazy.” Outside, he had a seizure, his first. It lasted for 45 minutes.

After waking up in the hospital, Heerschop asked for an MRI scan. Doctors in the Netherlands don’t automatically administer MRIs to patients suffering from seizures, but Heerschop insisted. One month later, a scan revealed a benign tumor, the size of a sweet potato, in Heerschop’s brain.

Though tumor discoveries are not usually described as such, “it was a big relief,” Heerschop says. Finally, “everything made sense.” For ten years, he had been afflicted with severe depressions, violent outbursts, migraines, and personality changes. He illustrated these afflictions in his daily “Depression Diary.” In self-portraits from the diary, the artist’s brains explode out of his head, his face is pocked with greenish boils, his eyes are black caverns. Though he tried everything from psychoanalysis to singing bowl therapy, none of his symptoms responded to treatments. When the tumor was discovered, Heerschop realized, for the first time, that his psychological condition had a physical cause.

Though tumor discoveries are not usually described as such, “it was a big relief,” Heerschop says.

Growing up in Bussum, a town 20 minutes from Amsterdam, Heerschop loved to draw. “As a kid, I was in my most natural habitat when drawing,” he says. “It made me quiet and happy. Everywhere we went, I had my little notebook.” He attended a Waldorf School, known for its encouragement of children’s creativity. At 16, he started taking weekend painting courses, and by 18, had his own atelier. At the Rietveld Academie Amsterdam, a prestigious fine arts university, he studied photography, drawing, design, and painting, and graduated in 1996. Shortly after, he got married. He felt like he was at the top of his game, “in control, at ease,” and that showed up in his artwork: Crisp pencil drawings of barns, trees, and silos; quietly surreal ballpoint illustrations of bakers baking bread.

But when he was 25, getting his master’s in art at the Sandberg Institute, Heerschop felt his psyche shifting. He began to experience depressions of a depth he’d never felt before. Crushing headaches led a doctor to prescribe him painkillers. And though he’d “always been gentle,” he started to hit his wife. At one point, he broke her shoulder bone. “I knew something was going on, but I didn’t know what it was,” Heerschop says.

One of Tom Heerschop's larger murals, completed before his diagnosis.

One of Tom Heerschop’s larger murals, completed before his diagnosis.

At his wife’s urging, he tried various forms of therapy: Psychoanalysis, rebirthing sessions, hypnotherapy, acupuncture, tai chi, relationship counseling. “Therapists tried to figure out what was wrong with me—they asked about my parents, my childhood, work-related stress, stress with my former girlfriend,” Heerschop says. “It never stopped, and none of it helped at all. That went on for ten years.” Over those years, Heerschop and his wife had three sons. At first, he was a gentle father, but soon became temperamental and violent.

Drawing was one of his few non-destructive outlets, and he was wildly productive in the studio. He made more than 100 works a year and appeared in solo and group exhibitions in the Netherlands and Italy. “A drawing a day keeps the doctor away,” he wrote of his “Depression Diary,” begun in 2000. Some work from this diary is psychedelic, lighthearted, in fauvist colors: A fuzzy stuffed penguin and a ginger cat are recurring characters. But much of it is tortured: A man in a crown slices his own head off with a kitchen knife, his black ink guts spewing; webs of paint smother the faces of sickly men with purple eye bags; an Easter rabbit with a basket of eggs gropes a nude woman; a horned demon sits in a wheelchair; a pink body curls on a cot in a jail cell. Compared to the quiet, controlled drawings from Heerschop’s college years, these works suggest psychic chaos.

“Not once did anyone come up with the idea that maybe all my problems had something to do with something inside my body, instead of my personality,” Heerschop says in a 2013 TEDx talk.

By the time the tumor was discovered in 2008, it had been growing in his brain for at least ten years. It was a millimeter away from his ear and a millimeter away from his eye. If it had gotten any bigger, he would have gone blind and deaf. “At first, I thought I was going to die, but doctors assured me I would survive,” Heerschop says.

The operation that removed the tumor left a scar shaped like a backwards question mark curving from his hairline down to his ear. Though recovery from the surgery was tedious, “I felt born again, for a while,” Heerschop says. “It felt like a new start.”

But there was no happily-ever-after to follow. Even after the tumor was removed, Heerschop still struggled with erratic behavior and strange symptoms: Headaches, memory loss, fatigue, irritability, aggression. Sounds overwhelmed him. And, when he returned to the studio to draw, he felt slow and stuck. “In the past, when I made drawings, it was like opening a never-ending stream,” he says. “Now, this stream had dried up.” After Heerschop waited eight months for an appointment at a neuro-rehab center in Amsterdam, a neurologist diagnosed him with Acquired Brain Injury (ABI) in ten minutes. The tumor had done considerable damage to his frontal lobe.

Tom Heerschop as seen on his official website.

Tom Heerschop as seen on his official website.

An intensive neurorehabilitation program educated Heerschop about ABI and taught him coping mechanisms, like mindfulness and body scan exercises, which he now does for 35 minutes a day. “It leaves me feeling completely reloaded,” he says. “I’m trying to draw with more mindfulness.” But the damage is irreversible, and challenges persist. About every three months, he has a seizure. After working for 45 minutes, he’ll have to rest or take a nap. “Thinking is tiring. If a child is talking while the TV is on, those sounds together are too much for me.” But for the first time in his life, he knows the cause of these symptoms, and has a support system that helps him manage them.

After the surgery, Heerschop and his wife split up. Two and a half years ago, he reconnected, via Facebook, with Bregje deVries, a former girlfriend, whom he’d fallen in love with while “young and kind of restless.” Now, “less restless,” he lives with DeVries, an educational scientist, who acts as his agent and helps him manage his medications and schedule.

In a way, this disease helps me to be much more reflective in everything I do.

“In a way, this disease helps me to be much more reflective in everything I do,” Heerschop says. “So many people just go into work and work too hard to earn money and come home and don’t think about it. I really have to think about the worth of everything I do.”

Heerschop’s life story is front and center on his interactive personal website, designed earlier this year by Utrecht-based Studio Airport. In a black-and-white video loop, the artist stares out from the homepage, blinking, occasionally laughing or scratching his nose. When you click on his head, animated fragments of his drawings pop up: A purple lizard-creature flicks its tongue; a bug-eyed bluebird peeks into the corner; a bonfire sprouts from Heerschop’s forehead. “There was only one way to make this site: Putting Tom’s photograph as the front door you have to go through to get to the work, entering his head and following all the series of works that sprang from it through the years,” deVries says. Nearly 1,200 of Heerschop’s artworks are displayed in chronological series from 1996 to 2015. Together, the series of drawings tell the story of his illness from the inside out: You see the evolution from crisp, controlled monochromatic still lifes, to scrawled stream-of-consciousness works in riotous color, to drawings about the tumult and excitement of early parenthood, to the depression diary, to hallucinatory works made while recovering from surgery, featuring cross-sections of brains and slinkies popping out of skulls.

One of Heerschop's later drawings, made as he recovered from brain surgery in 2012.

One of Heerschop’s later drawings, made as he recovered from brain surgery in 2012.

Before his operation, Heerschop averaged one drawing every two days; now, he’s lucky if he finishes one in three weeks. Instead of aiming to match the machine-like output of his earlier years, he’s changed his approach, experimenting with large-scale, ongoing works. “I let go of the idea that you can finish a drawing. It’s much more difficult for me to make one single image—that blocks me, in a way,” he says. “I’m now trying to find a way to make endless drawings.” His most recent work, a nearly 30-foot long panorama in black marker on white paper, took four months to complete. Featuring serpents and phalluses emerging from flames, bodies with giant eyeballs for heads, missiles with legs, and fractal-like arrangements of pencils, it was an abstract response to the terrorist attack at Charlie Hebdo in January 2015.

“I’m not yet in a place where I’m making my best work after my operation,” Heerschop says. “He’s always doubting his work,” deVries says. “But I’m his biggest fan.” Despite the perilous setbacks, he doesn’t plan on retiring any time soon. “Drawing is more than a job— it’s my love, it’s my blood,” Heerschop says. “I’m gonna draw forever.”

Acute Illness Essays

How Charlie Brown Helped Save My Best Friend’s Life

A 1990 Peanuts special helped me get my friend to the doctor when she came down with a rare bone marrow disorder.

In 1993, I was sitting on the indestructible grey carpet of my second grade classroom, while our teacher stood on her tiptoes to load a VHS tape into the TV. There were 45 of us there–girls in scratchy green and grey plaid jumpers, boys in playground rumpled khakis and white shirts–and we had been assembled to watch a movie. It was called Why Charlie Brown, Why? and it would teach me the most important thing I ever learned in that classroom.

As Vince Guaraldi’s iconic Peanuts theme began, everyone got comfortable on the floor, grabbing pillows and making sure they could see the screen. I saw my classmate Nick walk out of the classroom with one of the teachers. She had her hand on his back, six or so inches below his bald head, which was covered in temporary tattoos.

Nick had cancer, and it meant that his life diverged from ours like a stream that branches off of a river, maybe to rejoin it done the line. He would sometimes be absent for days on end, or go to the nurse’s office in the middle of the afternoon while the rest of us were in class. I didn’t know where he went, or what he was going through. That’s probably why the teachers had put the movie on.

Nick had cancer, and it meant that his life diverged from ours like a stream that branches off of a river, maybe to rejoin it done the line.

I turned my eyes to the TV, where Charlie Brown and his friends were waiting for the bus. I watched Peanuts at home, so I was familiar with the entire gang. When Linus appeared on screen, he was next to a cute blond girl named Janice. He’d been pushing her on the swings, and the two were clearly crushing hard. As they boarded the bus together, Janice hit her elbow on the railing.

“Ouch! Now I have another bruise,” she glumly moaned. She then starts cataloguing her bruises for Linus, showing dark purple patches all up and down her arms and legs, including some that hadn’t healed even from the week before.

“You sure bruise easily,” Linus says. “I never used to,” Janice responds.

A few scenes later, Janice says she’s feeling tired and goes to the nurse’s office. Three days later, Charlie Brown and Linus go looking for her, find out she has cancer, and visit her in the hospital. Over the course of the next twenty minutes or so, the Peanuts gang learn all about cancer, and its warning signs. Then the movie ended, and I mostly forgot about it for the next 13 years.

Why, Charlie Brown, Why by WarriorMovies

In 2006, I was living in Florence, Italy, doing an extended study abroad program at an American university. It was a crisp November day after a week-long fall break, and I was outside. Across the courtyard, I spotted Anne, one of my best friends since middle school. She taught me how to play ping pong, and I taught her about the culinary joys of putting ketchup on eggs. We wandered the mall together, sharing small bags of chocolate-covered gummy bears, and window shopping fake silver jewelry. One day, when we both happened to be home with a cold, we spent the entire day on the phone, watching trashy TV and talking. I had to call her back multiple times when the cordless phone battery died. We drifted apart in high school, but we’d somehow ended up at the same abroad program, where we became close again.

Anne spotted me, waved, and walked over. She just got back from a trip to Istanbul, she said. She started to tell me about her trip, but I can barely concentrate on her story. We both had white skin, and our summer tans are all but gone in the fall light, but she looks ashen. While she spoke, I found myself focusing on her lips. Normally pale pink, they were now almost white.

The conversation shifted, and Anne mentions that she’s feeling really tired. She’s been getting bruises lately, bruises she can’t remember getting, bruises that take too long to heal. I flashback to the Peanuts cartoon: Janice on the swing, Janice with bruises, Janice in the hospital. Anne with cancer.

 I flashback to the Peanuts cartoon: Janice on the swing, Janice with bruises, Janice in the hospital. Anne with cancer.

Anne might well have gone to the doctor without me. The fact that she’d brought up her fatigue and bruises at all meant she must have known, on a subconscious level, she was sick. But I was the one who pushed her, then and there, to call a doctor. Once I made the connection between her and Janice, I couldn’t unsee the pallor of Anne’s lips, or unknow that excessive bruising can be a symptom of deadly bone marrow diseases. “You have to get a blood test, now,” I told her.

A few hours later, I saw Anne again. She had taken my advice, and gone to a doctor, who had drawn blood to test. She heard back almost immediately: her white blood cell count was almost nothing. She had to go back and meet with the doctor immediately. The next day, she was admitted to the hospital, and Anne would spend the next few months battling to save her life from a rare bone marrow disease called Severe Aplastic Anemia.

Anne wasn’t allowed out, so I tried to bring the outside to her with stories about my crazy cat, Eva Cattiva, and my ridiculous love life. I did anything to make her laugh. Then, when visiting time was done, I’d leave, getting back on the bus to wind through the darkening streets back to my apartment. I was too revved up to eat, so I spent the week baking cookies — batches and batches of them — for everyone I knew. I gave them to my roommates, the men working in the small restaurant below my apartment, the butcher next door, all the administrators at school, and anyone else I could pawn them off on. One of the teachers eyed me closely  as I handed her another plate of chocolate chip cookies. “Are you okay?” her look asked.

Recently, I rewatched Why, Charlie Brown, Why? I was struck by how many details they left out, or softened. The bedroom-like hospital room that Janice stays in was a far cry from the shared room that Anne was brought to. Unlike Charlie Brown and Linus, who wore their school clothes to meet Janice in hospital, I had to wear a full-body, pale blue medical suit before visiting Anne. Also different from the cartoon: the infinite pokes and prods, blood tests, IVs, needles. The PICC line, its gruesome name matching its equally gruesome function. And I only saw it from the outside. There were a thousand jabs I never saw, and that’s Anne’s story.

That little movie is why, years later, I still have a best friend. Thanks, Charlie Brown.

But the biggest thing that was absent from the movie: the fact that not everyone survives. Thanks to a bone marrow donor in Germany, Anne received a transplant in March of 2007, and is now a healthy 31-year-old. But in 2005, the year before Anne got sick, Nick passed away after his cancer–which had been beaten into remission when we were kids–returned.

How important was Charlie Brown to saving Anne’s life in the long run? It’s impossible to say. What I do know is that when I remembered seeing that movie in my second grade class, Anne was closer to death than any of us knew. One accidental cut, from a cutting knife or even my cat’s claws, could have bled her dry. When things are that close, every coincidence, every small decision, every awareness matters. Whether a big reason or small, that little movie is why, years later, I still have a best friend.

Thanks, Charlie Brown.

Cancer Chronic Pain Profiles

The 15 Year Long Headache

Joshua May has woken up with a headache every single day for the last 15 years, but he's still not going to let life pass him by.

Having had Hodgkin’s lymphoma when he was sixteen, Joshua May has intimate knowledge of the inside of hospital wards, and of how incredibly short life can be. He says beating the illness during his teen years taught him to appreciate what he has, and he tries to live every day with this attitude.

But there’s something worse, to Joshua, than having cancer. It’s what he has now. New Daily Persistent Headache Disorder, a condition which is exactly what it sounds like: a headache that never goes away. One of the ways in which NDPHD gets diagnosed is the patient can pinpoint the exact date their headache began. Joshua’s headache started on March 14, 2003. He has now had it for 5286 consecutive days.

Joshua May has had a headache every day for the last 15 years.

He compares the chronic pain of his headache to cancer–and thinks the cancer was easier in many ways. For one, it’s easier for others to understand. They know it’s Bad™.  Doctors also know what causes cancer, so there’s a treatment path. Not so with NDPHD, which is defined mostly by symptoms, not causes. 

“With cancer, there’s an obvious treatment path. People empathize with you when you’re bald and vomiting. You’re allowed to take time off work, or just, like, life. Cancer is visible on scans, so doctors take you seriously. And there’s advocacy groups and support groups and, hell, entire teams of researchers trying to work out how to fix people with your problem in even better ways.”

“But if you try telling people you have a headache,” Joshua points out. “Well, you’re never going to get the same reaction.”

Joshua is a software engineer in Berlin, Germany, working on products like the menstrual tracking app Clue, and Taxfix, a tax refund site. The job is flexible around his health, and he manages his pain with a mixture of medication and biking outdoors. But having an invisible illness presents a range of challenges, access to medication being one of them. He’s lived and worked in five countries across three continents, but every time he moves, he has to start over with new doctors and new healthcare systems.

“Even within the same system, there are so many different factors. A young doctor versus the older doctor  at the same practice can have vastly different attitudes to what they’re willing to ‘believe’ and how far their compassion can bend. My only real success is trying, trying, trying until I find someone that will listen. That’s probably something 99% of people with chronic issues can relate to. Unfortunately it’s only getting harder as ‘the painkiller epidemic’ [focused on opiate use] spreads everywhere.”

Neither cancer nor NDPHD have stopped Joshua from traveling the world and living abroad.

Along with the difficulty of being believed by doctors and accessing appropriate medical help, Joshua says chronic pain interferes with interpersonal relationships. “I find it hard to say ‘I’m having a bad day… again’,” he says. “Everyone has a suggestion on how to “fix” your problem. My pain is unpredictable and unique and it’s probably going to get worse, which is really isolating.”

Romance is also difficult. The four little words “I’ve got a headache” have become such a well-known excuse for not wanting to be intimate that our society has literally turned them into a punchline. But losing his interest in sex has killed at least one relationship for Joshua. “It became breaking point, unfortunately. I did a pile of tests to see if anything else was affecting my libido. Nope, testosterone fine, everything checked out. It’s literally all in my head.”

It’s always hard to get out of bed with a headache, but Joshua says waking up every day with one is enough to drive anyone mad. “It’s one thing to wake up with a headache, but knowing the second you sit up, you’ll get a rush of blood and it’ll cause your head to throb. And that’s just the start of the day. If I could just have an hour of respite to get the day going, I feel like so much would be easier.”

Headaches can’t get in the way of savoring life to the fullest.

It sounds like hell. But having had cancer taught Joshua a lot about not giving up, and understanding when you’re making progress with an illness. Not all of your milestones are epic, but they add up: you need to celebrate them all the same. 

“I remember the day I realized [the chemotherapy] was working. I had my first treatment on a Friday, where I couldn’t eat a bit of cheese without choking. By the Tuesday after, I was able to eat a proper meal without any real issue. You couldn’t wipe the smile from my face that day!”

But neither chronic headaches not cancer are going to get in the way of Joshua living his life to the fullest.

“I think my adult life is heavily tinted with a general idea that you can’t put off happiness until retirement. I wouldn’t be surprised if I don’t make it retirement, due to the chemotherapy, so I have to live my life while I’m here. It’s a good reminder to make everything worthwhile. Don’t waste your life causing problems. Just try to do good things.”