Posts

PillPack Customer Stories

Subduing The Voices: A PillPack Customer Story

Like many in her family, schizophrenia almost destroyed Monique Jevne's life, until she admitted she needed help.

This Customer Story was brought to you by our sponsor, PillPack, a full-service pharmacy designed around your life.


Most people can’t distill the lessons of a 67-year-life into two words, but Monique Jevne can.

“Treatment works,” she says.

With an approachable face and bright eyes carried beneath a cancer survivor’s salt-and-pepper pixie cut, Monique hardly looks like a person who has spent decades haunted by voices only she can hear. Her resumé, which boasts MIT’s Sloan School of Management as alma mater, and includes high-profile Fortune 500 companies ranging from Proctor & Gamble to Corning to Citibank, wouldn’t suggest she’d done battle with mental illness for most of her life.

“Schizophrenia makes you constantly test the limits of reality, to make sure what you’re seeing is what others are experiencing.”

But since her teens, Monique has battled schizophrenia, a mental disorder marked by a detachment from reality, unclear or confused thinking, and hearing inner voices. Before she accepted her diagnosis, Monique’s schizophrenia compelled her to destroy jobs and relationships, as she followed impulses that made sense only to her.

“Schizophrenia makes you constantly test the limits of reality, to make sure what you’re seeing is what others are experiencing,” Monique says. “I’d do things that were dangerous, like try to shoot a feral cat that had managed to get into the basement, or take off my clothes in public just because I was hot. I’d see dead people sitting on horses wearing capes in front of me, and even though you don’t think it’s real, you still aren’t entirely sure.”

Despite a lifetime spent battling schizophrenia, Monique Jevne’s symptoms are now well-managed thanks to the right medication.

A So-Called ‘Normal’ Life

It’s hard to imagine Monique was ever the sort of person who would storm into a basement with a gun to shoot a cat.

On this idyllic snowy March day, I’m sitting at the kitchen table, drinking coffee, as Jevne works to pour brownie batter into a square, nonstick pan. “I’m not much of a cook,” she admits, checking the instructions on the back of the Duncan Hines box for the fourth time in as many minutes. Skirted in back by a copse out of which wild turkeys occasionally poke their heads and gobble, her spacious home exudes an air of normalcy. Flowers fill windows over puzzle nooks, art hangs tastefully on walls, and guests take off their shoes when they enter the house.

This apparent normalcy—as well as Monique’s loving 23-year-marriage to John Jevne, a former bank trustee turned self-employed financial consultant—is hard-fought testament to the power of compliance. Without the right medications, Monique is blunt about how quickly her seemingly idyllic life would shatter.

“Without treatment, I’d be nuts,” she laughs.

Monique and her husband of twenty-three years, John Jevne.

Schizophrenia As Birthright

In many ways, schizophrenia was Monique’s birthright. Once you hear her story, it’s not surprising she has it. It’s only surprising it didn’t destroy more of her life.

“I’d think to myself: ‘Better not let on. Better act as normal as possible.'”

Born in 1952 in Manville, Rhode Island, Monique’s impoverished upbringing sounds like something from Willy Wonka and the Chocolate Factory. She describes growing up in a one-room shack with a dirt floor and mattresses in the corners stuffed with corncobs. In this home, her alcoholic father—an undiagnosed schizophrenic himself—self-treated himself with any bottle he could get his hands on, while her mother did what she could to make ends meet.

For her family, schizophrenia is a family affliction. In addition to her father, Monique’s uncle Walter heard voices. “He’d come over sometimes and act oddly, saying bizarre things, usually sexual,” Monique remembers. “Otherwise, he lived at an institution. They’d sit him staring at a wall in a chair all day, and when I visited him, I’d think to myself: ‘Better not let on. Better act as normal as possible, or this will happen to you.’“

A younger Monique, before her symptoms were under control.

Playing Normal

Monique was very good at playing normal.

At 17, she went away to college, studying business administration at Boston University, then transferring over to the MIT Sloan School of Management for her post-graduate degree. In her second year of grad school, Monique received a schizophrenia diagnosis. She shrugged it off, graduating and then moving on to companies like Hewlett-Packard as a gun for hire, especially talented at hitting multi-million dollar sales targets.

“It all worked for me until it didn’t anymore.”

For the better part of two decades, Monique managed to achieve a sort of equilibrium between the high-yield, high-pressure demands of her job, and a mental disorder which could cause her to break down at any moment. Sometimes her schizophrenia took a toll on her, but when it did, no one at work noticed. ”I was such a high performer, no one thought anything if I disappeared for a couple weeks, because I’d been hospitalized or was laying in my apartment in a depressed, out-of-body stupor,” Monique says.

During this time, she had two kids, married and then got divorced. Through it all, she ignored her schizophrenia diagnosis, and the medications she was prescribed to manage it.

Monique shrugs. “It all worked for me until it didn’t anymore.”

When she admitted she needed to be properly medicated to keep her symptoms in check, Monique says picking up the pieces of her life was like doing a jigsaw.

From Suicide To Epiphany

When things came crashing down, it happened in slow motion.

Overwhelmed with the stress of balancing her health condition and a high-pressure job, she passed up a promotion opportunity at Hewlett-Packard, which ended up sabotaging her career. “When they call you upstairs, you’re not supposed to say no,” she explains. They assigned her to a department known within HP for being a sarcophagus for once-promising stars turned corporate burnouts. “I knew what that meant.”

Instead, Monique quit, but her symptoms got worse and worse. Her first marriage failed, and she went in and out of the hospital repeatedly for her mental health, until a failed suicide attempt finally made Monique take her schizophrenia diagnosis seriously.

“The way I was raised, you held on to every scrap of pride you could lay your hands on. I just couldn’t admit I was mentally ill.”

“I was always so ashamed of my diagnosis, I couldn’t let it in,” she remembers. “The way I was raised, you held on to every scrap of pride you could lay your hands on. I just couldn’t admit I was mentally ill. But then, during a residential treatment facility, I got to know women like myself with mental disorders, and I realized: they’re not that bad. We’re all just people: we smile, we talk, and we try to survive the best we know how. So maybe it’s okay for me to be this way—it’s not perfect, but it is the way it is.”

“We’re all just people: we smile, we talk, and we try to survive the best we know how. So maybe it’s okay for me to be this way—it’s not perfect, but it is the way it is.”

Treatment Works

Today, thanks to weekly therapy sessions and a medication plan that keeps her symptoms in check, Monique’s a model patient. When she’s not walking her Shih Tzu mix at a jaunty pace with her husband over the grounds near their New London home, she spends her days caring for her 9-year-old son, Devun, teaching classes at WW (formerly known as Weight Watchers), and training police officers on how to recognize signs of schizophrenia through the National Alliance on Mental Illness.

Even so, schizophrenia is still a daily part of Monique’s life, and probably always will be. “Even on the proper medications, I’m in my own world a lot of the time,” she admits. “I take a lot of mood stabilizers and antipsychotics, but the voices are still there: calmer and quieter, but still insistent that I behave in ways that aren’t rational.”

If there’s anything Monique believes, it’s that, without treatment, she would be dead.

It will also remain a family affair. No one knows why schizophrenia tends to run in families—no single gene seems to be responsible—but Monique’s oldest son battles issues with substance abuse and untreated schizophrenia, while her youngest she believes will eventually be diagnosed. And unfortunately, being schizophrenic herself does not make it any easier for her to get through to her sons when their symptoms are at their worst. Two schizophrenics may both be off in their own reality, but it’s not the same reality.

Monique keeps trying. Her dream is to see her disease as well-managed in her family as it is in herself. Because if there’s anything Monique believes, it’s that, without treatment, she would be dead. Treatment, she says, saves lives—both literally and figuratively.


From time to time, PillPack customers volunteer to share their stories with Folks. Treatment is an important part of managing any chronic condition and we are proud to be a part of our customer’s journey.

Essays

Mourning Luke Perry As A Gen X Stroke Survivor

If Luke Perry's death teaches us anything, it's that no one is too young to have a stroke.

When Luke Perry died earlier this month after a sudden massive stroke, I felt like I was mourning my first boyfriend. This despite the fact that that boyfriend–Beverly Hills 90210’s poetry-reading, Porsche-driving heartthrob Dylan McKay–didn’t exist beyond the TV screen.

Still, the loss felt immense and hit surprisingly hard. Not just because I came of age when 90210 was still on the air, but because I too had a stroke at an early age. In my case, it was in my mid-40s, but while Luke Perry died from his stroke, I lived.

Like many Gen Xers, I religiously watched 90210 when it was on the air in the ’90s. The illusionary world of that iconic ZIP code could not have been any further from my own environment of blue-collar coal country, where I grew up in poverty. Forget Kelly and Brenda—I actually identified most with the character of Andrea, the smart girl from the wrong side of the tracks who attended West Beverly High by using her grandmother’s address to pretend to live within the elite school’s territorial boundaries. As a poor girl in Honors classes who had also used inaccurate addresses on school records throughout a good chunk of my childhood, I could really relate to Andrea, who—serving as the editor of the school newspaper—also shared my love of writing.

The season 1 cast of Beverly Hills 90210, which became a teenage soap opera sensation when it debuted in 1990.

It was perhaps because that fictional high school setting was so foreign and unimaginable to me that it was so fascinating, captivating my attention for the duration of every episode. I was also a faithful reader of teen magazines like Tiger Beat, where Perry seemed to have a permanent spot on the cover throughout the ’90s. I was too poor to buy those magazines so would read them cover-to-cover at the library.

Through the glossy pages of the entertainment magazines, I felt like I grew to know Perry as a person. I knew he had a jagged scar that cut through his right eyebrow, the remnant of a childhood injury. I followed the reports of inevitable chaos that would break out whenever he and his co-stars would be appearances at malls across the country.

Through it all—and in the years following—Perry was almost universally praised for his humble attitude, his appreciation of the show’s passionate fans, and his kind, compassion nature. That is part of why his sudden death seemed so shocking, but the other was his youth: surely, Luke Perry, the perennial teenager, was too young to have a stroke, let alone die from one.

Surely, Luke Perry, the perennial teenager, was too young to have a stroke, let alone die from one.

I myself heard heard the same refrain countless times when people heard what had happened to me: “You’re so young.” But as I know from personal experience, you’re never too young. When I had my stroke, I didn’t have a single risk factor: I didn’t have high blood pressure or high cholesterol, had no history of diabetes or heart disease, I didn’t drink and never smoked. But still, a stroke found me, just like it found Luke Perry.

The public belief that you can be “too young” for a stroke is a dangerous misconception that can have deadly consequences. When an older person suddenly exhibits classic stroke symptoms like face drooping, arm weakness, slurred speech, confusion, and difficulty walking, onlookers usually know that they should be brought to a hospital as soon as possible. Yet when someone “too young” to have a stroke starts exhibiting those same symptoms, people are more likely to jump to other conclusions (for example, that they are intoxicated or tired or simply feeling poorly) than that they need to call an ambulance.

That’s potentially fatal, because time is of the essence following a stroke. Treatments given within a three-hour window of the first onset of symptoms can greatly increase a patient’s odds of survival.

In my case, my most evident symptom was that I suddenly lost control and function of my right arm. I downplayed it at first, assuring myself that my arm had probably just fallen asleep, or that perhaps I had a pinched nerve. I wasted valuable time ignoring what should have been a clear signal that I needed urgent help. Who knows if I had gotten to the hospital earlier if the lingering side effects of my stroke could have been mitigated? Yet I count my blessing every day, because the outcome could have been so much worse: like Luke Perry, I could have easily died.

Everyone who knew Perry seems to have loved, respected, and admired him. They raved about how generous he was, and what a loyal, steadfast friend he could be. The world is undeniably poorer for his passing, but if there can be some silver lining to this tragedy, I hope it’s that this serves as a wake-up call to those who think a stroke is something that only happens to old people.

Because if Luke Perry, the forever teenager, can have a stroke—anyone can.

Cancer Chronic Illness Essays

Cancer Was My Crucible, And It Made Me More Compassionate

The tragedies of illness can be agonizing to endure, but oftentimes, we come out the other side more loving people than when we went in.

If you saw my friend in the check out line at the grocery store with an expensive bottle of wine, you might feel envious. Jan is a traffic-stopper. Her facial features are perfectly symmetrical and her skin is dewy perfection. You might assume she’s on her way to a fancy dinner party with a better looking date than your husband.

When she came over yesterday, she wore a striking red tunic on her head with a matching red rose tucked behind her ear, a look only a movie star could pull off. It wasn’t one of those coverings that screams Breast Cancer in all caps like most head scarves do, no matter how cleverly they’re tied, piled, wrapped, or draped. Hers had the touch of a deliberate statement, a sense of style sported by a woman who can own any room she enters.

I couldn’t help contrasting her wrap with the one and only head cover I bought in anticipation of my own hair loss back when I got my diagnosis. The American Cancer Society website sold me a white cotton skullcap that looked good on the model, but I knew better than to have any faith in it even as I entered my credit card information. At the time, those scraps of cotton were offered at two for fifteen dollars or one for eleven, and I visualized an underpaid, overworked laborer cranking them out in a dimly lit factory for tightwads like me.

I’m not giving cancer an extra dime, I thought.

I’m not giving cancer an extra dime, I thought, and I ordered only one. It was comfortable but hideous, and I wore it all the time for nearly a year except when it was in the wash. My friend Rebecca sent me fun hats and a bright green wig, but I couldn’t find my playful side when it came to being bald, and trying to look glamorous hadn’t even occurred to me.

When Jan and her turban walked into my living room yesterday, I rushed to take her in my arms. We’ve met in person on only one other occasion, and it was just before she started treatment. Seeing her in person again overwhelmed me.

If it’s possible to touch grief, to taste it, to smell its fragrance, I would say that’s what I did when we embraced. After Jan’s first chemo session, she lost her child to suicide. On the morning of her daughter’s memorial service, Jan woke up with pneumonia. While we hugged, I brushed against the bottomless pit of her sorrow.

While we hugged, I brushed against the bottomless pit of her sorrow.

Looking at Jan’s manicured nails and curated outfit, no one would guess the depth of her suffering. It reminded me of a time in my life when I too endured a sustained season of grief.

During my twenties, my boss’s husband put a gun in his mouth and pulled the trigger. Then a friend with bi-polar disease killed his mother in a terrible psychotic episode. Shortly thereafter, my friend Bill, a guy who wore his homosexuality like a badge of honor, fatally overdosed on street drugs. My friend Kathy made an unsuccessful attempt on her life and then my friend Glenda lay down on the blind curve of a freeway until an unwitting motorist ended her painful existence. It seemed at the time that sadness had no floor, that my very survival required me to trudge through one brutal moment at a time. Most people saw the smile on my face and never knew about my struggle.

Sometimes back then I pictured God throwing rocks at me, his aim spot-on, his appetite unquenchable. I was in therapy for trauma I experienced as a child and the series of bad choices that trauma prompted me to take, choices that piled one miserable circumstance on another.

Now, I recognize that agonizing season developed my ability to feel compassion for others. The pain I endured then still helps me bond with others in need.

Now, I recognize that agonizing season developed my ability to feel compassion for others. The pain I endured then still helps me bond with others in need.

I don’t know how Jan will survive the loss of her daughter or the effort cancer demands from people it ensnares in its web. I only know that we have to be gentle, to love one another every chance we get.

First Corinthians reminds us that “Love bears all things, believes all things, hopes all things, endures all things. Love never fails.”

Sometimes love feels as thin as a strand of dental floss, but it’s there, as undeniable as the rising sun in the morning, the stars at night, and the toil of the days. Ultimately, it’s all we have, and I’ve come to believe, no matter how difficult it is sometimes, that somehow, it’s enough.

Advice

How To Find The Right Specialist

Whether you are trying to find a diagnosis or get better treatment, here's how to find the right doctor, from a woman who knows.

In 2011, I was diagnosed with stage four gallbladder cancer, a rare condition that’s almost always fatal within months. The reason I’m still alive is that as an experienced researcher, I was able to find experts who provided innovative care. So, from one patient to others, here are some suggestions on how to do it.

Find A List, Then Consider How It Was Compiled

If you type keywords, such as your diagnosis or symptoms, into a search engine like Google or Bing into find a specialist, the websites that turn up are likely to provide similar information about each doctor’s education, years in practice, and board certification. They might, however, differ in how they select doctors for inclusion.

The most comprehensive list is maintained by the American Medical Association, which says that its Doctor Finder database includes “virtually every licensed physician in the United States.” With more than 814,000 listings, it’s searchable by geography and specialty… but you might find yourself drowning in options.

Insurance company websites, by contrast, are likely to list only in-network doctors, as medical center websites list only doctors who practice at that facility. Similarly, Medicare’s Physician Compare, which offers unusually detailed information about each doctor, includes only those who accept Medicare. If you need a specialist within a particular network or geographical area, you could start with these websites to identify the most promising possibilities, and then use other tips in this list to decide which of them is best for you.

Still other websites list only doctors who pay to be included. An example is  ZocDoc, which matches patients with doctors who have immediate openings.

Photo by Sarah Pflug from Burst

Be Picky!

Look, you want the best specialist you can find. The trick is how you find that person.

To find doctors selected for their accomplishments, a long-standing option is Castle Connolly’s Top Doctors list of physicians nominated by other physicians and then vetted by a review team. Although individual physicians cannot pay to be included, medical institutions can pay to allow free public access to detailed information about Top Doctors at those institutions. By contrast, only the names of other Top Doctors are available unless you pay for access to additional information. Alternatively, you can use other tips suggested here to learn more about a Top Doctor once you have the name.

You want the best specialist you can find. The trick is how to find that person.

Among newer, free-of-charge websites that use evaluative criteria is Amino, whose research includes such factors as insurance claims, medical billing records, how likely doctors are to perform certain procedures, and how many patients they see with a particular condition. Since doctor-finder websites are many and varied, it’s worth searching for something like “physician-patient matching” for a list of available websites.

Always Check The Source

There’s a lot of noise out there when it comes to finding a medical specialist. There’s also a lot of sites that are just trying to scam you. Make sure when you’re searching for a specialist, you know that the source recommending them to you is who they claim to be.

There’s a lot of sites that are just trying to scam you.

In addition to clicking the “About” tab on each website to learn how it selects doctors, you might also look at the URL. For instance, even if a website’s title includes words like “national,” “federal,” or “government,” it’s not a government source unless the URL ends in .gov.

And before relying on any website not associated with a well-respected medical center or a legitimate organization like the American Cancer Society, it’s a good idea to look for reviews of the website itself. If there are no reviews, it is, at best, not a well-substantiated source.

Photo by Matthew Henry from Burst

Don’t take Patient Ratings at Face Value

Patient ratings of physicians are widely available on websites such as Healthgrades, Vitals.com,  U.S. News Doctor Finder, Angie’s List, and RateMDs.com. Still, tempting as it may be to use consumer satisfaction to choose physicians as we do toasters or cellphones, those grades can be misleading.

Consider, for instance, a search I just did on Angie’s List for internal medicine physicians in my area. Several doctors have a grade of A, indicating their average score. Then comes someone with a B, and many patients might stop there and choose one of the A’s. But of that doctor’s eighteen reviews, seventeen are A’s, with glowing descriptions of her thoroughness and caring attitude. A single F dropped her average to a B; the reason given is that the staff didn’t answer email quickly enough.

Try to look at the big picture, not just the rating.

Of course, if patients consistently made the same serious complaint, that would be cause for concern. But as a Consumer Reports summary of a study in the Journal of the American Medical Association points out, most doctors don’t get enough reviews to provide a reliable guide. Moreover, as WebMD observes, the objectivity of ratings websites may be open to question if they accept advertising from doctors or offer paid profiles.

The lesson? Try to look at the big picture, not just the rating.

Hospital Quality Matters

Some institutions are more competitive than others, and their teams have more experience with rare conditions and procedures. Websites like Consumer Reports, Medicare’s Hospital Compare, and U.S. News Best Hospital listings can help you identify top institutions, as well as providing data on such measures as safety ratings, surgical complications, and hospital-acquired infections. These ratings aren’t as useful as they might be, since not all hospitals report all, or any, of the requested information. Still, they’re a place to start.

There’s Always Pay-To-Play

If you prefer, you can have a professional service select a specialist for you. I’ll use Grand Rounds as an example, since it’s included in the health care plans of several large employers, such as Comcast, Wal-Mart, and Costco, and is also available to the public.

Grand Rounds will connect you with a specific doctor based on such things as where they trained and where they practice, how often they’ve performed certain tests and procedures, and patient outcomes. Unless covered by your employer, the service costs $599. Grand Rounds will also commission an online second opinion by a prominent expert for $700 to $7500.

Wrapping Up: How Do You Know When to Stop?

You’ve probably heard about patients who suffered for years before finding the right diagnosis or treatment. For them, persistence paid off. But you’ve probably also heard accounts of patients, or their loved ones, prolonging terrible pain and expense by refusing to accept the limits of medical knowledge, or the futility of prolonging life in a body that’s no longer viable.

When I faced that question in 2011, I consulted eight doctors before finding the surgeon who saved my life. For me, the search was justified because I was healthy enough to live for years if the cancer could be eliminated, and because my diagnosis was so rare that much of what doctors said was based on assumptions rather than data. Under those conditions, I kept searching for a top-tier expert who’d consider my specific case with an open mind.

Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same…

Photo by Sarah Pflug from Burst

I’d like to think that if I’m ever in a situation where medical intervention is useless, I’ll have the sense to choose comfort care — but no one can be sure of that. With life itself on the line, those decisions come as much from the gut as from the brain, and no formula can provide a flawless answer.

So, along with the practical suggestions offered here, I add some advice from Dr. Atul Gawande in Being Mortal.

“Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?”

Chronic Illness Disability

Is Marie Kondo and KonMari Compatible With Chronic Illness?

After watching Netflix's new show about the life-changing art of tidying up, I tried it for two weeks to see if it was compatible with my disability. Here's what I learned.

It was another one of those days: a Netflix-and-chill day, in bed, because of a flare-up. My social had been abuzz about Tidying Up With Marie Kondoand my love for reality-TV home makeover shows made me interested. So I decided to binge the first season while I lay in bed.

If you’ve never seen Tidying Up, it’s a show in which Marie Kondo, founder of the KonMari Method, enters people’s home and teaches them to declutter and clean their spaces, using the main criteria that one should only keep objects in their life if they inspire joy.

It’s a nice theory, but as I watched Kondo and the families she was working with energetically clean their spaces, I found myself growing frustrated. None of these people had health conditions. None of these people were disabled.

I looked around my room at the heating pads on the floor and clothes stacked on my dresser, and wondered how I’d ever find the energy to clean in that manner. The KonMari method seemed like yet another system that worked well for able-bodied individuals, but overlooked the unique realities and needs of disabled individuals.

I decided to try the KonMari method myself for two weeks to see what it was like for a disabled person. Here is what I learned.

Lesson One: Don’t Mess With My Bed

The process started off simple enough. Marie Kondo says to start your tidying up process with clothing, and in the show, the first step many of the families take is to take all of their clothes and throw them on the bed to sort. So I pushed open my closet and started tossing everything onto my bed.

Throw all your clothes on your bed to sort. It sounds easy, disability agnostic. But as a person with chronic health issues, I found that as the pile got bigger and bigger, I became increasingly anxious.

The families Kondo worked with on her show seemed to have no issues covering their beds with piles of clothes, but as a disabled person, this is the main place I go to when having a bad day. Like many sick and disabled people, my bed is my sanctuary, a safe space, and a place of refuge. And here I was, burying it.

Like many sick and disabled people, my bed is my sanctuary, a safe space, and a place of refuge. And here I was, burying it.

Nearly in tears, I realized that not only did I have to sort through all of this, but I had to do so before I could get to my bed again, which would require a level of energy I wasn’t sure I had.

Marie Kondo suggests starting by finding something you’re certain you want to keep, that sparks such joy that it makes you go ching! when you hold it. That’s your baseline, the feeling you want everything you decide to keep to make you feel. I dug through the pile and grabbed out a pink sweater with a penguin on it, a velvet jumpsuit, and a red and yellow plaid dress – all things that definitely spark joy in me. Soon my ‘yes’ pile was growing with all those pieces of clothing I revert to over and over again, as I tossed into another pile the things I wasn’t so thrilled about.

It was then that I hit a wall, both physically and emotionally. I’d not been at this very long, but I’d reached my body’s max, and without many other options, I curled up amongst my piles of clothes. I realized there was no way I was going to have the energy to do all of the sorting, along with the folding and putting away, on the same day, which is what KonMari suggests.

I needed to come up with a different plan.

Marie Kondo walking by a neatly organized closet.

KonMari asks you to only keep items in your life if they spark joy, but is it compatible with disability?

Lesson Two: It’s Okay To Shift The Rules

For a lot of critics, KonMari comes across as inflexible in its philosophy of austerity. It feels, frankly, like a lot of the pop philosophy du jour: both too strict and too whimsical, somehow, to survive a brush with the reality that life is messy and conflicted.

But as I lay there, I remembered the tender way Kondo worked in Episode 4 with a recent widow, Margie. In the episode, Margie expresses a need for dealing with her deceased husband’s belongings in a different way. Instead of trying to convince her to go against her instincts, Kondo says: “I understand. Let’s shift the rules for you.”

I imagined Kondo seeing me curled on my bed, and decided that she would understand if I shifted the rules. With that I put my clothes that sparked joy in the closet, shoved all the rest of the mountain back haphazardly into my drawers, and decided to come back to my tidying tomorrow, after a much-needed nap.

The KonMari method, like many things that I come across in my daily life, requires modifications and adaptations because of the limits of my body.

The KonMari method, like many things that I come across in my daily life, requires modifications and adaptations because of the limits of my body. For the rest of my time tidying clothes, I worked on one drawer of clothes at a time. I found that was the most my body could handle in a day, and it helped me to not get so overwhelmed by the process as well. I’d dump out a drawer and sort through, discarding some items and keeping all those that sparked joy.

And it paid off.

I did not anticipate how much pleasure I’d find in folding my clothes into tiny rectangles. I was so excited with the first shirt I folded that I giggled out loud! The process of folding my laundry, which I’ve never much liked before, now brings me great satisfaction and has become a new meditative process for me. By sitting at my kitchen table to fold, I can use Kondo’s method without the pain of bending.

Marie Kondo folding clothes.

I was skeptical at first, but Marie Kondo’s emphasis on clothes-folding really did make me happy.

Lesson 3: Your Things Aren’t Who You Are

KonMari’s emphasis on mindfully going through your possessions, object by object, really makes you think not only about what you want to keep, but why. As I worked through the process, I realized I had kept many things around for reasons besides usefulness or joy, even if I’d convinced myself otherwise.

For example, nostalgia, as if that pair of shoes could transport me back to a different time before my spine had begun fusing itself together. I’d also kept many things from a scarcity mentality, fearing that if I got rid of them, I might not have them at some unexpected time in the future when I needed them, but wouldn’t be able to afford to replace them. And some objects I held onto, not because they sparked joy, but because I felt they were somehow connected to an identity I feared I had left behind in my illness, such as the books I’d used to write my thesis. If I let them go, was I also letting go of my identity as an able-bodied person?

Marie Kondo is right: things are not what make us who we are.

But Marie Kondo is right: things are not what make us who we are. I can appreciate the time I was in school and know the hard work and effort I put into my academics without having the books taking up my physical space. I can recall the joy and confidence of walking in the heels my body no longer can handle wearing without them housing dust bunnies in my closet. I can remember my past without living in it.

Conclusion

During the two weeks I followed the KonMari method, I was able to tidy my clothes and my books. However, I was only able to do this with pretty significant modifications that allowed me to break the tasks into much smaller pieces.

Is KonMari out of touch with the needs of the chronically ill and disabled? Yes and no. I was skeptical at first, but the philosophy of KonMari is one anyone can practice, even if they have to change the rules to accommodate their unique challenges. At the same time, I think Marie Kondo might underestimate the size of the mountain that people with chronic illness have to climb when following her method.

For me, the process of putting everything in one central location and physically touching each item before deciding if I keep it or not just didn’t turn out to be feasible. It’s a lot to ask even an able-bodied person to go through literally everything they own to appraise its value in their life, but for someone with a chronic illness, the energy required multiples tenfold.

Is KonMari even worth it to me, as a person with a health condition? I’m not sure it is.

And that brings up another question. Is KonMari even worth it to me, as a person with a health condition? I’m not sure it is. While I was able to sustain Marie Kondo’s methods for a few weeks, long-term, I think I’ll revert to my organizational ways, because while they might not be as aesthetically pretty, they prioritize energy conservation and pain management… things that are infinitely more important to me as a disabled person.

Several days ago the KonMari.Co Instagram posted a photo with the caption: “The space in which we live should be for the person we are becoming now, not for the person we were in the past.” Instead of my space being crammed with reminders of my past life, it’s important to fill it instead with things that reflect the person I am now and want to become. And maybe the method I use to get there doesn’t really matter.

Disability Vision & Hearing Loss

The Treasure Hunters: Geocaching When You’re Disabled

Technology and a dose of true grit are helping these modern-day explorers take part in the global treasure hunt called geocaching.

Ed Manley gazed up the mountain. He could see the peak, where the treasure was stashed. And boy, did he want that treasure. But as a one-legged man with weight issues, with crutches and a body that complained whenever he moved, getting up that hill was going to be difficult.

A small container with a plastic-wrapped notebook doesn’t sound like much in the way of treasure. But for geocachers like Ed Manley, who live for the hunt, these caches–hidden under rocks, stashed in hollowed-out tree trunks or stuck to the metal base of a lamp post—are more valuable than pirate gold.

In geocaching, a small ‘cache’ of objects–containing a logbook and several small prizes wrapped in a waterproof container–is hidden somewhere in the real world. The GPS coordinates of the cache are then posted online for other geocachers to find, along with hints and clues on how to locate it when you’re in the area. Those who find the cache record their adventures in the logbook, swap out any of the items they want for prizes of similar value, and return the cache where they found it for other people to try to locate.

Because geocaches are often placed in remote or challenging places, it doesn’t sound like a hobby that would play well with disability or chronic illness. But the reality is different: for people like Ed Manley, geocaching can provide a literal lifeline.

A man with a beard in a powered wheelchair going geocaching with his daughter.

Ed Manley geocaching with his seven-year-old daughter.

From Suicide To Geocaching

Manley’s introduction to geocaching wasn’t typical. It began in 2003, as he prepared to commit suicide.

In 2003, he fell down some stairs at work, breaking his neck. Manley already had health issues due to a car crash in 1979 that had hospitalized him for two years, but he accident spelled the end of his working life, and the beginning of a depression.

After years in hospital and 42 surgeries, his mobility was at an all-time low, and he’d developed an addiction to painkillers.

Manley’s introduction to geocaching wasn’t typical. It began in 2003, as he prepared to commit suicide.

“I didn’t feel like I was of benefit to my family,” Manley remembers. ” I had become addicted and it nailed me to the couch, I couldn’t do nothing, I was useless.”

Based in Birmingham, Alabama, Manley decided to end his life on his boat.  “They’d find my boat floating, and that would be it.”

But as he was getting ready, the mailman dropped by. He had a package for Manley: a GPS device.

“I had ordered it using cigarette coupons and a few dollars, and I’d forgotten about it. I didn’t know a thing about a GPS.”

Interest piqued, Manley went into the house and sat down at his computer. One of the first hits  geocaching.com, where he discovered there was a geocache nearby. Curious, Manley followed the co-ordinates to a hole in the fence at his former old high school.

“I thought that’s pretty cool, and I decided not to kill myself.”

The Healing Power Of Hunting

The GPS device changed everything, Manley says. Although he was a long way from what he considered “healthy,” geocaching gave him something to do. Getting out of the house made him feel better.

A one-legged man on crutches wearing camo and hunting for geocaches in the woods.

Ed Manley going geocache hunting on his crutches back in the 2000s.

“It gave me some hope of recovery that I could have a life,” Manley explains.

Over the following year he hunted down increasingly difficult caches, building his emotional and physical health. Geocaching fed a strength Manley didn’t know he had. “I’d put my crutches down and crawl through mud on my butt.” He threw away the painkillers, and began to focus on a goal.

“I had one cache in mind,” Manley recalls. “It was on the top of the mountain. For a one-legged fat guy to get to the top of the mountain seemed like an impossibility. But I said if I can get up the top of that mountain and find that cache I will know I have recovered.”

It took him a year to build up the stamina to scale the mountain. “But I got up there and got that cache. I got up there and cried like a baby. I’d escaped the drugs, the depression, the feeling of uselessness.

“Geocaching saved my life.”

“Geocaching saved my life.”

Now 63, Manley is still geocaching. He mostly gets about in a powered wheelchair, which means mountains are off the cards.

“I don’t go after the hard ones as much anymore,” he says. “Over 10 years I proved I could get any cache. I have found caches in four countries and throughout 29 states. It’s been a blessing. It’s kept me sane.”

Manley still finds around two caches a day, gradually adding to the thousands of finds he’s racked up since that first find. And he has a new companion, his seven-year-old daughter, the child he has with the second wife he met through his hobby.

“My daughter loves it more than I do: she insists we go out, even in the snow.”

Geocaching When You’re Blind

For Day Al-Mohamed, geocaching is like hunting pirate’s treasure. “You have a secret map that takes you to a treasure. Especially some of the great big caches you find, like a big ammo box that someone has filled with things.”

A young, attractive Muslim-American woman with her guide dog.

Day Al-Mohamed’s visual impairment just makes her more determine to find elusive geocaches.

The public servant, who works as a senior advisor the US Department of Labor in Washington DC, began geocaching with friends. “They had just started and were super excited about it.” The excitement was contagious, and Al-Mohamed and her wife began hunting down caches on their own.

Visually impaired since birth, Al-Mohamed can make out shapes, and colors if she gets up close. But by pairing her iPhone’s voiceover function with the geocaching app, when she hunts down caches she’s able to take the lead with navigation.

With a mind that’s given to problem-solving, Al-Mohamed can tackle the most cryptic of clues. In fact, these often give her an edge.

“People are clever with their clues, and with the ones that are puzzle based I have as good a chance as anybody else.”

While most cachers use the visual cues on the map, Al-Mohamed uses the compass in list mode, which guides her to the cache, inch by inch. “It’s kind of like getting hot or cold: Nine feet, eight, seven – okay we’re going well.”

“People are clever with their clues, and with the ones that are puzzle based I have as good a chance as anybody else.”

Cache found, she lets her companion take over.

“When it comes to sticking hands into strange places I’m going to let somebody else do that.”

Although sometimes, there’s no avoiding the “ick” factor.

“There was one that someone had put on the side of a bike trail. It was a tree with a hollowed out base. My wife put her hand in and she let out a huge scream. And she said, ‘you stick your hand in there!’ I reached my hand in there and let out a scream, and pulled out a giant spider. Somebody had got a giant rubber spider, opened the abdomen in it and put a silver cylinder in there with the cache.”

Being visually impaired, she has to tread more carefully than others over the rough terrain geocachers often traverse. But working in the city has its upsides, and that’s the number of easy-picking caches right on her doorstep, which, due to her work schedule are often hunted at night, with a flashlight.

“In the city it’s more … how you get to it without someone else seeing you,” she says. “Secrecy becomes the more important thing almost than getting to it.”

Cheryl Rankine with members of the Australian Deaf Geocaching group.

The Universal Language of Geocaching

Cheryl Rankine has spent the last nine years geocaching her way around Australia, racking up almost 11,000 finds, or around three a day. Her hobby has sent her across four Australian states, and she regularly meets up with other deaf geocachers for events around the country.

Part of the 30-strong Australian group Deaf Geocaching, Rankine has ready-made friends in all corners of the country. But the language of geocaching is universal, she says, and when she comes across other geocachers she’ll pull out a pen and paper, or even mime to reach common ground.

Not one to shy away from a challenge, Rankine’s dedication to finding caches sees her scrambling through the Australian bush. Despite encountering snakes, and one instance where she was attacked by wasps, she’s determined to get to the most formidable caches, even if it involves climbing a tree.

“I always have a ladder in my car,” she says. “But I need more practice using ropes in trees.”

Rankine relies on visual clues and maps to navigate.

“Geocaching gives me an escape. I will never give up

“Walking in the bush, I keep my eyes open to watch everywhere. I can’t hear background [noise] but I manage to watch everywhere all the time. We even cache at night, with a good strong torch so we can see.”

However, with caching you never quite know what you’ll get, she says. Along with a ladder, she never leaves home without a walking stick, a magnet for accessing out-of-reach small metal boxes, pliers to open nuts, and a mirror. And even with all that prep, she still gets caught out.

“Sometimes, the clue could be song lyrics, and I’ll ask my daughter to listen to the song for me.”

She also contacts the cache owner if she needs a help, or calls the National Relay Service, an interpreting line for the deaf community.

The tenacious woman says she’ll geocache as long as possible.

“If I have many things on my plate at home, geocaching gives me an escape. I will never give up.”


Creative Commons Photo by Flickr user DM.

Acute Illness Features

When A Parent’s Medical Intuition Is Right

Doctors can be quick to dismiss the gut instincts of a caregiver, but there's a lot more to parent's intuition than meets the eye, as these stories show.

“In nursing school, they literally tell you never to question a doctor,” says Becky McKeown, a nurse.

But after her eight-year-old son, Isiaah, spent two months having his persistent cough misdiagnosed as everything from strep to tonsillitis, Becky listened to her intuition. She pushed for a chest X-Ray against her doctors wishes, revealing a dark shadow on his lung resembling a penny.

“They came in and said we have good news and bad,” remembers Becky. “The good news is, it’s a peanut. The bad news is, we need to put him on life support now.”

A bronchoscopy was scheduled to clear the peanut out, which had been there for at least a couple of months. Even so, Isiaah ended up with recurrent lung infections for the next year, and could possibly have died if the peanut had not been discovered when it was.

The lesson? “Always trust your Mommy Gut,” says Becky.

Isiiah and his older brother, post-procedure.

When Intuition Knows Best

“When the mommy alarm goes off, you have to listen,” says Pediatrician Natalie Lambajian-Drummond, MD, of Whole Child Pediatrics in Yorkville, Illinois. And that goes for Daddy Alarms too.

In medical school, Dr. Lambajian-Drummond says, her mentor told pediatric residents the two most important things they needed to know were how to pick the sick child out of a crowd and to always be humble and listen to parents.

“When the mommy alarm goes off, you have to listen.”

That nagging voice, whether it’s shouting or even whispering, is usually important. And while doctors and other medical professionals might not want to listen, countless parents have discovered that their intuition is something to pay attention to in a medical crisis.

Molly Spencer and her son Andy.

Know When To Insist

Take Molly Spencer of Detroit, MI. For several weeks, Molly’s nine-year-old son, Andy, was spiking high fevers and complaining of back pain. His pediatrician ordered several ultrasounds of his back and abdomen, all of which were normal. The day after the latest normal ultrasound, he spiked another high fever and Molly took him to the ER at a nearby university hospital. After taking his history, they said they weren’t going to order another ultrasound.

“I insisted,” she says. “I just had a feeling.”

“I feel like listening to my gut and insisting may have saved my son’s life.”

The doctors relented. This ultrasound was not normal. It showed a large abscess in Andy’s kidney that had grown into his psoas muscle. After being  admitted into the hospital for a few months, and then having surgery to correct the abnormality that caused the abscess, Andy is now in good health, although will require close supervision from a urologist through the rest of his life.

“I feel like listening to my gut and insisting may have saved my son’s life,” she says. “He could have died if the abscess had burst.”

What Is Intuition?

It’s easy for a doctor to dismiss a parent’s intuition as distracting at best, and superstitious at worst. But there’s a lot more going on with a parent’s intuition than may at first meet the eye.

“It’s a rapid pulling together of what we know into a ‘gut feeling’ about what’s going on or what we should do,” says Psychologist Eileen Kennedy-Moore, author of Kid Confidence: Help Your Child Make Friends, Build Resilience and Develop Real Self Esteem.

According to Dr. Kennedy-Moore, a parent’s intuition is more than just guess-work. It grows from all the experiences a parent has caring for a child, coming together into a subliminal understanding of their wants and needs that allows a parent to quickly assess a situation and know how to respond.

Research would seem to agree.

According to a study at American Friends of Tel Aviv University’s School of Psychological Sciences, researchers found when participants were forced to choose between two options based on instinct alone, the participants made the right call up to 90 percent of the time. And in a study at the Boston College Carroll School of Management, researchers found that intuition was a more reliable tool than analysis when a participant already had in-depth knowledge of a given subject.

When To Know You’re Right

Eight-year-old Payton Micther wouldn’t be here today if not for her mother Miranda’s intuition.

Payton Wachter as a newborn, before her Wolff-Parkinson-White Syndrome diagnosis.

Born healthy, Payton was barely a month old when Miranda noticed a change. She was sleepier than normal and barely wanted to nurse. Miranda felt a growing sensation of dread, but her friends and family chalked it up to the anxieties of a first-time mom.

Then Miranda had a vision, of her dead mother telling her: “Don’t listen to them. You’re right.”

Miranda woke up with new resolve. Against the advice of her (now ex) husband, Miranda called the pediatrician. As soon as she said ‘lethargic’, Payton and her mother stepped into a whirlwind, from the pediatrician’s office to an ambulance to the ER.

Payton today.

It turned out that Payton’s heart was enlarged, and she was in heart failure. Doctors told Miranda that if she’d waited even another couple hours, Payton might have died in her sleep. She had Wolff-Parkinson-White Syndrome, a disorder that causes problems in the electrical signaling used to keep the heart pumping.

Miranda was right not to listen. She was right all along.

The Touch of an Angel

Sophy Burnham,  best-selling author of The Art of Intuition, calls intuition an instantaneous, unreflective apprehension: a sudden knowing that falls with conviction based on no logic or analysis.

“[Intuition] is what I call the tap of an angel’s wing.”

“It is what I call the tap of an angel’s wing,” she says. And it’s important for any parent to listen to its signs: he subtle hunch, the twist of the gut, or any other inexplicable sense of disturbance is probably your intuition trying to tell you something.

It’s always better, she says, to listen to your gut. What’s worse: the embarrassment about being wrong, or a lifetime of regret when your intuition told you something about the health of your child… and you didn’t listen?

Mother Knows Best

When her first son, Gavin, began projectile vomiting after every feeding, Shannon Smyth called her pediatrician, but he assured her everything was fine. “At first it made me question myself,” she says. “Did I just see milk fly across the room? I just knew this wasn’t right.”

Gavin and Shannon Smyth.

But Gavin’s spit-up problem only got worse. At an appointment with her pediatrician, Shannon brought up Pyloric Stenosis, a stomach abnormality that ran in her family. Her pediatrician assured her the condition was not hereditary, and suggested the problem might be overfeeding.

By four weeks old Gavin was projectile vomiting consistently. He also seemed to be hungry and miserable. Eventually, she brought Gavin to the ER for an ultrasound. Sure enough, he had Pyloric Stenosis.

Gavin went to surgery, while Shannon transferred to a new pediatrician. But several years later, Shannon’s third son, Duncan, began projectile vomiting just like Gavin had.

New doctor. Same story. Duncan’s pediatrician just didn’t believe her intuition could diagnose her own son.

“I didn’t give up. I just knew it was happening again,” Shannon says. “I wasn’t going to let Duncan go as long as Gavin did being in pain.”

“‘Just listen when a mom tells you she knows in her gut that something is wrong with her child..”

Frustrated, her pediatrician finally relented, sending Duncan to a specialist. Duncan’s upper GI test was barely over before the tech handed Shannon a call. It was her pediatrician, apologizing. Duncan too had Pyloric Stenosis.

Unlike the first pediatrician who doubted her, Shannon decided to accept her doctor’s apology, and stick with his practice.

“He now refers to me as a seasoned mother,” she laughs. “But I always tell him, ‘Just listen when a mom tells you she knows in her gut that something is wrong with her child.’”

Cancer Profiles

Cancer Can’t Keep The Cat Lady Down

After stage 3 colorectal cancer, Samantha Martin is cancer free and ready to hit the road with her act, the Amazing Acro-Cats.

“It’s my gift in life to be able to figure out an animal’s mind and what motivates them,” says Samantha Martin.

Martin, 54, is the founder of the Amazing Acro-Cats and the Rock Cats, a traveling troupe made up of typical domestic short-haired cats, a groundhog, a chicken and two rats that perform jaw-dropping circus-like acts and even play music. “We’ve added a saxophone and a trumpet, so it’s taken on a free-form jazz feel,” explains Martin, who, outfitted in cat’s ears and either a catsuit or a ringmaster’s outfit, is a big part of the show.

Checking boxes off a seemingly endless to-do list before she departs, Martin is preparing to hit the road in her brand-new bus for a southwest tour. Before she brings the Acro-Cats on tour, though, Martin has one last appointment: getting her bloodwork done to make sure she is still cancer-free.

Meet the Acro-Cats.

Healing Cancer? Cats Can Help

Diagnosed in early 2018 with stage 3 colorectal cancer, Martin was forced to cut last year’s tour short to begin her treatment.After five-weeks of oral chemotherapy, Martin underwent one surgery to remove the cancer and a second seven weeks later to “reconnect” her. While the treatments had side effects, including fatigue, bowel issues, “chemo brain,” and post-operative pain, Martin was comforted by her animal companions, which include 27 cats, an African serval and two Labradors.

“The purring sound lowers blood pressure and helps people to heal, emotionally and physically,” she says. “It’s science.”

“The purring sound lowers blood pressure and helps people to heal, emotionally and physically,” she says. “It’s science.”

A self-described “outcast” with few friends, Martin discovered that she had an unusual rapport with animals early in life.

At the age of 10, she started training the family Lab, and when she was 16 years old, she caught a rat, smuggled it into her dorm room at military school and taught it to do tricks. “I was drawn to misfit animals like rats and snakes,” Martin says. “If nobody likes it, it must be special.”

Later, she enrolled in an animal behavior class at the local community college and ultimately earned a degree in animal service. After interning at a store that trained exotic animals to perform in film, television and live shows, Martin took a job running the rodent and reptile department at a local pet store.

Samantha Martin running a couple of her cats through a routine.

Finding Her Calling

One day, a movie production team stopped in and asked if she could train rodents to climb into a box for a key scene in their film. “I can train them to crawl in a box and answer a telephone,” she told them.

It turned out to be her big break. While she was on set, a WGN news crew showed up and filmed her, later airing a segment that got picked up by CNN and aired around the world. It led to a slew of television spots, including high-profile gigs on Geraldo and Inside Edition.

To supplement her film work, Martin worked as a wildlife educator, giving talks at schools, libraries and birthday parties. She turned her two-flat building in Chicago into a private “zoo,” with a reptile room in the basement and a space for farm animals out back. The whole house smelled like animals, she recalls, but she didn’t mind. “I started coming up with ways to teach them, so that I could demonstrate their abilities with cute tricks,” Martin says.

For example, after watching her coati, a relative of the raccoon with a long nose, dive headfirst into a laundry basket and fish out a pack of gum buried deep in a pants pocket, Martin started putting treats in other places. Eventually, the coati could open a mail box, take out a wallet, remove a rolled-up dollar bill and unroll it to find a treat. She likewise taught groundhogs to raise flags and raccoons to play basketball.

Two cats playing drum and guitar. The drums say "Rock Cats"

The Rock Cats, the Acro-Cats’ house band.

Founding The Acro-Cats

Not to mention her many cats. Weary of giving talks at schools (“I don’t care for children,” she says), in 2005, Martin put her cats to work, launching first the Rock Cats and then the Amazing Acro-Cats. “There are a million dog trainers, but very few cat trainers, and I like a challenge,” Martin says.

It wouldn’t be possible without clicker training, she explains, a method of pairing a clicking sound with a treat to encourage the desired behavior. Starting out with art gallery openings, night clubs and birthday parties, Martin eventually rented a theatre in Chicago for a six-week run. People showed up in droves. “The cats sucked, but people loved the act so much,” Martin says, remembering their first performances.

“The cats sucked, but people loved the act so much,” Martin says, remembering their first performances.

Over the years, Martin’s cats have appeared on Animal Planet’s Pet Star, Must Love Cats and Animal Witness. Her favorite one, Tuna, now deceased, also starred in the independent movie, Zeke. Most recently, Martin and her feline friends appeared on the Late Show with Stephen Colbert, where Martin says they “bombed.” “I’m terrified of public speaking, and the cats feel your stress,” Martin explains.

A woman with dark hair in a circus ringmaster's outfit standing proudly in front of posing cats.

Martin is proud of what she’s been able to accomplish with her cats.

Fur-Ever A Feline Foster Mom

Not just an entertainer, Martin has made it her mission to foster cats as well. She’ll take on an entire litter, train them all and keep the most talented for the act. Those that remain are available for adoption, a service she runs out of the front of her tour bus. Over the past decade, Martin has found “fur-ever” homes for 228 felines.

“You’ve already adopted a cat that has developed a relationship with people, a cat that will meet you at the door and give you a high five,” she says. I can’t save the world, but I can help people build a relationship with their cat.”

“I’m one of the luckiest people alive… because I’ve had all these animals giving me all this unconditional love.”

Martin knows all too well how impactful such relationships can be, offering companionship as a child and comfort in the wake of her cancer diagnosis. That said, she has plenty of human friends and supporters too, people who accept and even embrace her for her uniqueness. When her insurance policy denied a claim, for example, she launched a GoFundMe and raised $76,000, which allowed her to keep the lights and feed the animals on during her nine-month treatment.

“I’m one of the luckiest people alive,” Martin says. “Everybody has sad moments, but overall, I’m a pretty happy person, because I’ve had all these animals giving me all this unconditional love.”

Chronic Illness Diabetes Roundups

6 Songs About Chronic Illness From Pop Stars With Health Conditions

Illness is the great leveler. Just ask Missy Elliott, Lady Gaga, Nick Jonas, Selena Gomez, Avril Lavigne, and TRACE, all of whom have written songs about the experience of being chronically ill.

When it comes to pop culture, the chronic illness experience isn’t always represented, but that might be about to change. Over the past few years, several high profile singer-songwriters and performers have revealed their own diagnoses with long-term conditions and disabilities, and they’ve begun to speak out on the topic, and even refer to it in their songs. Here, six musicians and the long-term conditions they live with.

Lyme Disease — “Head Above Water” by Avril Lavigne 

If you’ve ever wondered why Avril Lavigne took such a long break from the music industry, the answer is simple. The singer contracted Lyme disease which forced her to retreat from the spotlight, and question whether or not she’d ever sing again. Speaking to Billboard in October 2018, Lavigne explained, “I was in bed for f***ing two years. It went undiagnosed for so long that I was kind of f***ed.” She even shared that, prior to her diagnosis, multiple doctors had made her feel “crazy” by not believing her symptoms—which is something that many people, and women especially, can relate to.

2018’s comeback single—“Head Above Water”—is about the moment that Lavigne “accepted that I was dying… like I was underwater and drowning, and I was trying to come up to gasp for air” (via Billboard). Lyrics such as “My life is what I’m fighting for,” and “I’m underneath the undertow” will be instantly relatable to anyone who’s ever felt overwhelmed by a condition they didn’t ask for.

Fibromyalgia — “The Cure” by Lady Gaga

Back in September 2017, Lady Gaga was forced to cancel her European tour because of a fibromyalgia diagnosis. In a statement released at the time (via The Guardian), it was revealed that Gaga had made the difficult decision not to tour due to “severe physical pain that has impacted her ability to perform.” As anyone with fibromyalgia syndrome knows, the unpredictability of the condition means that patients can experience a variety of symptoms including extreme unexplained exhaustion, and severe muscle and body pain.

Released in April 2017, “The Cure” seemed to speak to the condition Lady Gaga had yet to reveal to her fans. Lyrics such as “If I can’t find the cure, I’ll fix you with my love,” and “If you say you’re okay, I’m gonna heal you anyway,” read like the comforting voice a chronically ill person might crave amid intense pain and discomfort out of their control. Gaga would return to the theme on the A Star Is Born soundtrack in 2018 with the track “Heal Me”.

Lupus — “Wolves” by Selena Gomez

Wild rumors suggested that Selena Gomez had absconded to rehab when, in fact, she was dealing with a lupus diagnosis she was yet to reveal to the world. Speaking to Billboard in October 2015, upon the release of her second solo album, the aptly-titled Revival, Gomez explained:” “I was diagnosed with lupus, and I’ve been through chemotherapy. That’s what my break was really about… I wanted so badly to say, ‘You guys have no idea.’”

In September 2017, Gomez revealed she’d also undergone a kidney transplant due to complications relating to the chronic illness. And she’s frank about the fact that living with a chronic illness has exacerbated her mental health. Speaking to Harper’s BAZAAR in February 2018, Gomez explained, “I’ve had a lot of issues with depression and anxiety… and it’s not something I feel I’ll ever overcome.”

Upon its release in November 2017, many fans speculated that Gomez’s collaboration with Marshmello—“Wolves”—was about lupus, and it’s easy to see why as Gomez sings, “I’ve been down the darkest alleys. Saw the dark side of the moon.”

Anxiety — “Anxiety” by TRACE

Up-and-coming singer TRACE isn’t afraid to delve into what living with anxiety is really like—conjuring it as the perpetual lurking demon it truly is. On her latest single she warns that the condition is, “Creeping through the doors, and under all my sheets. I can never sleep. It worries me.” (Which, same tbh). In the music video, the condition is literally personified, and TRACE is relentlessly stalked by two largely silent, horror movie characters.

Detailing her anxiety for L’Officiel, TRACE writes, “one minute you’re enjoying a snack in front of the TV, and the next you’re in the shower, bawling, thinking about death. Personally, Anxiety takes me away from the present and puts me in a harmful future. It makes me worry about things I cannot control or things I might not understand.”

Graves’ Disease — “I’m Better” by Missy Elliott

In 2008, Missy Elliott was diagnosed with Graves’ disease—an autoimmune disorder that affects a person’s thyroid—after exhibiting some pretty serious symptoms including a dramatic weight loss, per Billboard. The rapper explained, “It causes hair loss, your eyes bulge. My blood pressure was always up from just overworking,” having revealed her diagnosis in a statement to ABC News in 2011.

Speaking at Essence’s Black Women in Music event at the start of 2018, Elliott said of her condition, “I was sick and I couldn’t even lift a pen. My nervous system had broken all the way down.” But Elliott’s health has been improving and, as collaborator Lamb raps on 2017’s “I’m Better”, “It’s another day, another chance. I wake up, I wanna dance. So as long as I got my friends, I’m better, I’m better, I’m better.”

Diabetes — “A Little Bit Longer” by Nick Jonas

When he was 13 years old, Nick Jonas was diagnosed with type 1 diabetes, and went on to write the song “A Little Bit Longer” about finding out he had the condition. With lyrics like “Waiting on a cure, but none of them are sure,” Jonas grapples with the lifelong condition and his need to medicate and keep it under control.

In 2008, Diabetes Control explained that Jonas diagnosis followed a plethora of unexpected symptoms including “mood swings, extreme thirst, frequent bathroom breaks, and sudden weight loss.” And in 2015, Jonas told Healthline that he uses an insulin pump to monitor and control his condition, and said, “yes, it has affected me creatively in the sense of how it’s shaped who I am as a person, and given me perspective.”

If you’d like to listen to these songs on Spotify, here’s a playlist containing all of them. If you know other songs about chronic illness, feel free to add them!

Chronic Illness Disability Essays

In 2019, Choose To Be A Better Ally To The Chronically Ill & Disabled

Make this your New Year's Resolution. Here's how to stop being ableist in 2019.

Every time we open our mouths or put pen to paper, the words we use either affirm someone, or disenfranchise them; hurt them, or support them. Which is why, for New Year’s Eve, I’m imploring everyone I know to make the same resolution: try to be mindful of your own ableist tendencies, and start trying to change them.

As an invisibly disabled person, I experience ableism, or discrimination in the favor of able-bodied people,  on a daily basis. Most of the time, the people that perpetuate these issues are not bad people; in fact, many of them consider themselves allies. But because ableism is so deeply engrained in our culture, even people who want badly to help sometimes end up hurting or alienating people like me.

Think about it. How many times in your life have you said that someone was acting crazy, or needed to go back on their meds? How many times have you excused some momentary instance of clumsiness by saying: “Sorry to be such a spaz?”

All of these are examples of ableist language. Of course, most people don’t mean to insult people with mental or neuro-motor issues with these turns of phrase. But the intention doesn’t change the fact that there are real people out there–people you probably care about–who do struggle with such issues, secretly or not. People with health conditions and disabilities already have a harder time in life than most able-bodied people. Do you really want to make life even an iota harder for them… or, heck, for anyone?

If you’re a good person, you don’t. So here are some examples of the way ableism can sneak into our everyday interactions, and some tips on how to fight against it.

Language

Words reflect culture. This means that what we say is a microcosm of our society’s views of people, places, and things. There are many everyday idioms that are actually deeply rooted in ableism. Most of us now know that it isn’t cool to make fun of or belittle someone who is disabled mentally and/or physically, but our language hasn’t completely caught up.

We often fail to recognize the power that labels can hold, both positively and negatively, and when we use labels to describe others, that has a direct and sometimes very traumatic impact on their lived experience.  If we use ableist language, we limit the existence of another person and reduce them to something they are not. All of us, able-bodied and not, are multifaceted, and our language needs to reflect that.

All of us, able-bodied and not, are multifaceted, and our language needs to reflect that.

So where do you start? Well, there’s likely going to be some trial-and-error, but the good news is, no one expects you to get it right immediately, and most disabled people or people with health conditions will appreciate being asked questions about what words and terms to avoid.

The key skill you need to exercise is empathy. Ask yourself questions like: If you were someone who used a wheelchair, would it feel good to you if someone said you were “bound” to a tool that helps you navigate the world? If you were a person with a mental illness, would it feel good to you for someone to describe something as crazy or psycho? If you were someone with epilepsy, would you be okay with being reduced to that condition as an “epileptic?”

Taking a moment to consider disability in its human context makes it much easier to understand why ableist micro-agressions can be so painful, even when they are unintentional. All of us, no matter who we are, want to be seen for who we are, and using precise, compassionate language is key to meeting that goal.

Actions

Supporting people with disabilities and breaking down ableism isn’t just about what we say, it is also about what we do and think. And, if anything, this can be harder to address than what language we use, because it’s often not as convenient to act like a proactive ally to people with health conditions. But the old adage really is true: actions speaks louder than words. So if you really want to support people with health conditions and disabilities in your daily life, here are some examples of things you can be doing.

Don’t assume that everyone in the room is able-bodied — Disability can look all kinds of ways, and it doesn’t always appear the way that we have been taught to traditionally see it.  The disability community includes people with chronic illnesses (both mental and physical) and a whole range of impairments that you are unable to see with the naked eye. When I sit in disabled seating on the subway, I often find myself thinking that other passengers must be wondering why a healthy-looking 22 year old is sitting in the areas reserved for people with disabilities. Most people with invisible disabilities struggle with feeling validated in the community. So please do what you can to support us.
Support disability-accessible businesses, and make plans with accessibility in mind — The accessibility of a shop, venue, or restaurant literally determines who can come. That means that if you want to be less ableist, you should make a business’s accessibility in mind when choosing to give them your money, even if their lack of accessibility doesn’t otherwise effect you. And keep in mind, accessibility doesn’t just mean that there are wheelchair accessible entrances, although that is important. For example, if you were planning an event, it also means smaller, more subtle things like making sure that there is space for people to sit, that there are microphones to assist hearing-impaired people in attendance, and that there are plenty of breaks schedule for people who deal with fatigue or chronic pain. It is impossible to imagine every possible disability and plan for them, of course, but choosing to be mindful in even a few small ways of the way inaccessible businesses can shut disabled people out of an experience can reap big dividends.
If you’re a manager, allow employees flexibility in where and how they work — More than 133 million Americans--over 40 percent–deal with chronic conditions. An additional 40 million are considerd diabled. That means, if you’re a manager, there’s a good chance someone who works for you is dealing with medical issues. Be their ally. For those people, it can be a lifesaver to be able to work from home sometimes in order to get to doctors’ appointments or just to give their bodies time to rest. Employees should have the flexibility to work how and when they can, as long as that doesn’t impact their work.  Not only does working from home benefit the employee, but it also benefits the employer; employees that work from home have been shown to be more productive and more likely to stay with the company. Plus, telecommuting is more ecofriendly and more cost-effective.
Don’t reduce disabled people into stereotypes —  So many of the stories that we see about disabled people only focus on the sad parts or the inspirational parts of the disabled experience. Either people are held up as miserable people to feel sorry for (referred to in the chronic illness community as “tragedy porn”), or they are romanticized as saintly individuals struggling valiantly to go on (known similarly as “inspiration porn”). What our culture rarely views disability as is just another factor in the human experience, or disabled people as multifaceted human beings, just as hard to distill into a single quality as anyone else. What we need are representative narratives of disability, and the only way we’ll get those is by demanding them. So when you are selecting movies and books to watch, try to seek out narratives of disability that are multidimensional (this catolog complied by Vanderbilt’s Iris Center is a good place to start). And when possible, eek narratives created by disabled people; searching hashtags like #disabledartist or #disabledcreatives can help you find artists to follow (and support their work financially if you can)

Ableism isn’t going to disappear overnight, but if all of us commit to taking small actions to fully include people with disabilities—millions of Americans like me, who are your neighbor your coworkers and even your family members—we can begin to create more equity in this country.