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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.

Disability Mental Health Roundups

5 TV Shows That Get Disability Right

From Stranger Things to Keeping Up With The Kardashians, here's five shows that refuse to look at chronic illness and disability through an able-bodied lens.

When it comes to representations of disability and chronic illness in popular culture, it’s easy to be frustrated. Anyone that knows me will attest that I often lament the lack of realistic depictions of disability on TV, which is all too glaringly obvious when you spend the majority of your life propped up in bed with your laptop, like me. (I could probably get up: I just choose Netflix).

Any disabled or sick person will tell you that seeing an inaccurate depiction of the condition they’re toxically glued to for the rest of their life hurts. For instance, I found ballet show Flesh & Bone gripping until one of the dancers discovered she had MS, and her diagnosis was as hamfisted as a Joss Whedon rewrite.

But all is not lost. There are shows that are getting accurate representation right. These television shows refused to be lazy, and instead dared to get disability right… in some cases, even daring to cast disabled actors in disabled roles (Eddie Redmayne, take a seat).

If you want to support the change you’d like to see in television, here are five television shows that get disability right.

Breaking Bad

A man with cerebral palsy talks to a bald man in glasses in a living room with plaid curtains in the background.

RJ Mitte as Walt Junior in Breaking Bad.

RJ Mitte’s depiction of drug lord Walter White’s son remains one of the strongest examples of a disabled actor being cast in a role which doesn’t focus on his disability. That’s important, because the part could’ve so easily gone to an able-bodied, Mickey Mouse Club reject. Living with cerebral palsy in real life, Mitte’s character had the condition, but it didn’t have him. Walter White Jr. was never defined by his disability, and is basic proof that just as Shonda Rhimes employs colorblind casting on all of her shows, an actor’s physical or mental impairments shouldn’t limit their chance to audition for any part. Plus, Walter’s dad, as a person with cancer who’s undergoing aggressive therapies, is a literal disabled badass, and I invite you to fight me.

American Horror Story

Jamie Brewer, who has Down Syndrome, is one of the core cast members of American Horror Story.

Actor Sarah Paulson recently said of American Horror Story co-creator Ryan Murphy (via Variety): “His unfaltering commitment to telling the stories of women is noteworthy. This is a man who wants to tell the stories of women over 40.” And the same is true when it comes to casting disabled actors in unexpected roles. One such disabled actor is Jamie Brewer, a woman with Down Syndrome who’s played clairvoyant witches, cult members, and creepy dolls, and continues to recur on the series even now. Plus, Inside Edition recently called Brewer the “First Woman With Down Syndrome to Star in Off-Broadway Play,” and if that’s true, it’s no mean feat that the prolific performer is blazing a trail and hopefully, instigating a major change.

You’re the Worst

Gretchen Cutler of You’re The Worst struggled with depression.

Gretchen Cutler could’ve been a cookie cutter anti-rom-com heroine, breezing through her character arc on too much booze, sex, and witty repartee. Instead, when You’re the Worst returned for a second season, Gretchen revealed herself to have the sort of show-stopping depression that ends lives, and destroys relationships. For anyone familiar with clinical depression, breakout sitcom You’re the Worst became agonizing to watch because its representation was so damn close. When viewed next to fellow character Edgar Quintero’s PTSD, You’re the Worst significantly defined itself as the sitcom that wouldn’t sugarcoat mental health even for a second.

Keeping Up With the Kardashians

Kim Kardashian struggled with anxiety on Keeping Up With The Kardashians after being robbed at gun point.

Love them or hate them, the Kardashians are honest when it comes to the truly negative and difficult-to-handle aspects of life. And when Kim Kardashian West was robbed at gunpoint in Paris in 2016, she developed a serious case of anxiety as a result, and viewers were given glimpses of her agonizing reality with the disabling condition. And despite mainly being off-camera these days, Rob Kardashian’s diagnosis with diabetes punctuated his own reality series, Rob & Chyna. Whether or not you agree with the Kardashian brother’s approach to handling his chronic condition, his denial and refusal to face up to the realities of the illness were endlessly relatable for any of us who have ever struggled to come to terms with our own diagnoses.

Stranger Things

Gaten Matarazzo of the Netflix phenomenon Stranger Things.

Gaten Matarazzo finally got his big break when the creators of Stranger Things decided to write the actor’s disability—cleidocranial dysplasia, a condition which affects the development of a person’s bones and teethinto the script. In a recent interview, Matarazzo revealed that he’d lost out on several auditions in the past, “Because they couldn’t write in a disability into the show because they had already written the script” (via HuffPost). However, as the casting process for Stranger Things proves, there’s literally zero reason that any role should be defined as able-bodied in the character description. It just shouldn’t, and doesn’t need to, happen anymore.

What These Shows All Get Right

These shows might all be majorly different in content and tone, but they’re linked by the fact that they’re not framed through an able-bodied lens. Instead, each depiction, regardless of genre, explores the highs, lows, and mundane details of disability, chronic illness, or mental health. Even more important is the fact that actual, real life, bonafide disabled people were cast in roles that were rewritten completely or simply created for them. Rather than farming out these roles to able-bodied actors, casting directors, creators, and show-runners took the time to consider disability. And in the cases of Matarazzo, Brewer, and Mitte, character arcs were altered for the better thanks to the actors portraying them.

These shows might all be majorly different in content and tone, but they’re linked by the fact that they’re not framed through an able-bodied lens.

Whether there’s strictly a “right” way to handle disability in the arts is questionable, but thanks to the growing number of crucially truthful roles for disabled and sick performers, the television landscape is getting more and more relatable. For instance, the first show by and starring Maysoon Zayid, co-founder of New York’s Arab-American Comedy Festival, is called Can-Can and is currently being developed at ABC. The autobiographical sitcom will (per Variety) follow a “Muslim woman who has Cerebral Palsy (Zayid), as she struggles to find love, the right career, and discover who she is separate of her opinionated Muslim parents,” which sounds super promising, and a little overdue.

It’s time that the stories of chronically ill and disabled human beings weren’t erased, glossed over, or summarized in a “case of the week” episode on a generic medical show. Sick people are tired as it is without having to fend off another inaccurate, depressing, or infuriating depiction of their well-worn diagnosis. And thanks to the television shows above, that’s slowly starting to change.

Advice Explainers

Ask Ada: ‘When Should I Tell A Date I’m Disabled?’

In our new advice column, Ada explains the best way to reveal an invisible disability when dating, and helps a husband understand his wife's decision to undergo a life-changing surgical procedure.

Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.

How Do I Tell My Date About My Invisible Disability?

“Dear Ada—Reentering the dating world with an invisible disability is difficult. I’ve had mixed results: scaring people off by revealing it too early on or “being manipulative” by not disclosing it for what they perceived as a long time (~2 months, casually seeing each other). Any advice on navigating this situation?” – Sincerely, Brooke

Dating is one decision after another: What should you wear? Where should you go? How long should you wait to follow up for a second date? An invisible disability forces an additional question on you: When should you mention your diagnosis?

I wish I could tell you that there was a formula: for example, if you’re set up with your date through a friend, disclose your disability on the second date, but if you meet online, wait until at least the fifth. But unfortunately, there’s not, just like there’s no clear formula in most dating dilemmas.

I can, however, tell you that you’re wasting your time by keeping the information to yourself. This isn’t to say you should introduce yourself by saying something like: “Hi, I’m Emily and I suffer from Endometriosis!” But bringing up the topic early helps you weed the good dates from the bad ones.

Disclosing your disability shouldn’t feel like a confession. There’s nothing you need to be ashamed of.

I’d recommend disclosing your disability as soon as you’re sure that you’d like to continue getting to know the person you’re out with. You’re not determining if you want to marry them, just whether they’re worth the disclosure.

That answers the ‘when’ but what about the ‘how’? How should you reveal an invisible disability to your date?

Well, the truth is that disability shouldn’t be some shameful secret. It’s a regular part of your life, and that means the best way to disclose it is for it to come up naturally. So if, for example, you have Crohn’s disease, a good time to disclose that would be after you described your food allergies to the server. You could then follow-up by mentioning to your date how much you’ve learned about food since your diagnosis, then let them ask questions, guiding the conversation along when need be.

The bottom line is that disclosing your disability shouldn’t feel like a confession. There’s nothing you need to be ashamed of. Presenting your truth early and earnestly allows your date to process the news with understanding and compassion. If they don’t, then kick ‘em to the curb and try again.

My Wife Wants To Undergo A Double Mastectomy. Help!

Dear Ada—Recently, my wife of three years discovered that she had the BRCAI mutation, which makes it statistically much more likely that she will get breast cancer. Her mother and grandmother died of breast cancer, so my wife wants to get a preventive double mastectomy. But I’m not so sure. I’ve tried to talk to my wife about it, but she’s adamant there’s nothing to talk about: even though she doesn’t have cancer yet, she’s made up her mind, and it doesn’t matter what I say.

Suffice to say, I’m struggling to accept her decision. It’s not that I’ll love her any less without breasts, and obviously, I don’t want to lose her to cancer. I also know that it’s her body, and ultimately, that makes it her decision. But choosing to go through such an extreme surgical procedure without really asking me how I feel about it hurts, and makes me concerned about our future. What other extreme measures might she choose without talking to me first?

What should I do? What is the right way for us to approach this?” – Sincerely, Sam

It seems as if your issue is less about the double mastectomy and more about the fact that your wife made this major decision on her own and isn’t listening to your concerns. It also sounds like you think she came to this conclusion too suddenly.

But I think the truth is that your wife has probably been weighing this decision for years. When your wife’s grandmother and mother died of breast cancer, she probably began researching her options, including mastectomy. When it was confirmed that he was a carrier of the BRCA1 mutation, your wife’s decision became clear. It isn’t that she’s taking this decision lightly, it’s that she’s had a lot more time to come to terms with the emotional and physical transformation that will follow removing her breasts.

This isn’t about your wife’s breasts: it’s about navigating a difficult time together while fully supporting the other person.

Meanwhile, you’re only processing all of this for the first time. You don’t have the intimate knowledge she’s gained about breast cancer over the years, and because of that, you’re having a hard time grasping her train of thought. It’s not that she is trying to shut you out of the decision-making process, it’s that you are both literally at different stages of processing the news, without realizing where the other person is at.

While your wife is ultimately the only person who can make a decision about her own body, you both still need to try to come to a common understanding as to why she’s making this choice. So ask her to educate you, and explain how how she came to her decision. Tell her you love her, and accept her decision, but be honest about feeling left out, and concerned about what a failure to communicate productively about major life-decisions might mean in the future.

And then, once she explains? Respect her decision, and support her however you can. Because like you said, this isn’t about your wife’s breasts: it’s about navigating a difficult time together while fully supporting the other person.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

Chronic Illness Essays

Why I’ll Never Be Okay With Having A Chronic Illness

Everyone expects me to be okay with my condition. I'm here to tell you that's not how it works.

After my mom died, my doctor told me that grief was a gradual process. He also implied that there was a time limit on it. “Three months is normal,” he told me. “Six starts to seem long.” But when you’ve lost a part of yourself, there is no estimable time within which you’ll be better, no deadline in which you forget. And I’ve found the same to be true of the expectation that I’ll “come to terms” with having MS.

Multiple sclerosis is a disease of the nervous system. Faulty antibodies attack the body instead of protecting it, crossing the blood-brain barrier to cause inordinate damage to the brain and spinal cord. The condition creates lesions on the protective coating on my nerves, meaning signals get interrupted or confused, leading to nerve pain, tingling and itching, spasms, immense fatigue, mobility issues, cognitive impairments, increased disability… the list goes on, but you get it.

I was diagnosed with relapsing-remitting multiple sclerosis in 2013, around 18 months after my mom first found out she had cancer. While her initial treatment and operation were successful, ridding her body of that first tumor, it came back with a vengeance. By then, my own health issues were in full swing, too. Both diagnoses changed my life irreparably, and I’ll never be okay with that.

An Off Switch I Don’t Control

Both diagnoses changed my life irreparably, and I’ll never be okay with that.

Even though finding out I had a chronic condition explained a plethora of symptoms that went previously unexplained, learning that I was now disabled was about as digestible as the wrapper on a Big Mac. The only things that kept me going during the dirge that followed were an insatiable appetite for pop culture, and my support network on social media. Rewatching Felicity got me through, when you’d think meds would suffice.

My diagnosis floored me. There are literal physical things I can’t do anymore, and goals I’ll never achieve, because my body had developed its own turn-off switch that I’m not in control of. For instance, I can’t keep up with my friends, and traveling is way more challenging than it once was. I have to abide by a different timetable from the masses, and make sure that I exercise to stop my muscles giving up altogether. I don’t look too far towards the future because my body has the potential to deconstruct like the mission in a Tom Cruise movie, and that terrifies me. And before anyone starts, that’s not negativity—it’s my reality.

Any initial relief I had in explaining why I am the way I am—and no, it’s not in my head, and I’m not lazy, either—was soon replaced by a generalized dread that doesn’t really subside, nor should it. I’m living with a disease and it’s degenerative—how exactly should I feel about that? How much longer until I accept it with the ease of a Netflix cancellation? Answer: NEVER.

My Life Before Diagnosis

I’m living with a disease and it’s degenerative—how exactly should I feel about that?

Prior to diagnosis, I made theater shows. From applying for funding, to writing scripts, to performing the work myself, I was forging a career in the arts and trying to do it on my own terms. In some ways, performing had been my dream since high school, but I was never a natural at it—too awkward a human being to smoothly navigate a stage believably. But funding bodies and arts organizations continued to support me, so I went where my career seemed to take me.

A week after wrapping the tour of my second solo show, I ended up in the hospital with what turned out to be MS. While I’ve tried to write theater shows since, it’s a much trickier affair. My body can’t handle a nine-to-five, or fit into another person’s schedule.

The word accessibility is often bandied about, but the truth is, it only serves to make able-bodied people feel better. In meetings since I’ve been told that theater takes everything and might not be for me if my heart isn’t in it. But my heart isn’t the problem—it’s my debilitating and energy zapping sickness that’s the barrier, and desire won’t suddenly make that shit possible. Plus, I can’t change elitist attitudes which make the arts an exclusive arena that’s difficult to enter for most, near impossible for the disabled.

The word accessibility is often bandied about, but the truth is, it only serves to make able-bodied people feel better.

Just think about the movies and TV shows that have chosen to cast able-bodied actors in disabled roles. Arguments that “the best person for the job was hired” persist, and should prove just how far accessibility has to go before disabled people don’t feel disappeared into the background, erased from their own stories and character arcs.

After being told “we all feel tired” and generally having my symptoms minimized out of existence, and it being suggested that theater’s 24/7 work week wouldn’t suit me, I’m more determined than ever to put up a fight. I won’t go quietly into the night about this chronic illness I didn’t ask for.

A Diagnosis Is Not A Tidy Bow

Some therapists and healthcare professionals would like a diagnosis wrapped up neatly with a bow or placed in the correct trash can for recycling. A reusability. A sense of understanding or acceptance within a respectable timescale. However, learning to live with a new normal doesn’t just take time, but the effort of rebooting a beloved franchise. And as any sick person knows, effort is something in extremely short supply. My phone battery is running at 4% constantly and the wire to my charger is dangerously frayed.

Obviously, it’s not my job, nor anyone else’s, to make onlookers “feel better” about the disease that I have to live with. And the same goes for grief. If you’re uncomfortable because I’ll be mourning my mother forever, in my own way, then that’s your problem, not mine. My body has refused to conform to any supposed “norm” and my brain’s following suit.

I’m probably coming off as negative which is… well, accurate. I didn’t want this disease anymore than I wanted Ben Affleck to play Batman, but I learned to love him in his own way, even in those dead-eyed Justice League reshoots. And I’m learning to love my MS, and handle other people’s reactions to it in the same way that Affleck handles criticism to his superhero casting—by literally not giving a shit.

In case it needs stating: There is zero reason that anyone with a chronic condition should perfectly process their diagnosis, apart from to make other people feel better about it.

But just because I refuse to accept the chronic condition I’m stuck with, that doesn’t mean that I’m not living. I live in spite of my condition. Multiple sclerosis isn’t all of me, although on some days it consumes me, tries to convince me I’m dying. I might never shift the anxiety it’s amped up in me like a Christmas drink in Starbucks—too much syrup, a sickly cinnamon sprinkling, a heart-pumping, insanely sugary, caffeine explosion. And I sure as hell will never be happy I have a degenerative disease which requires monthly IV infusions. And my mom’s still dead, in case you forgot (I didn’t). I will never be okay with either thing, and not being okay is absolutely the only way for me to be.

Disability The Good Fight

How To Teach Photography To The Blind

Teaching photography to a class of 20 blind students has taught Maria Iturbe to be a better photographer herself.

For most of the week, Mexican architectural photographer Maria Iturbe makes her living shooting building interiors and exteriors, as well as her fair share of executive portraits.

But about five years ago, a non-profit called Ojos Que Sienten, or Eyes That Feel, was looking for professors to lead a 12-session photography class for the blind and wanted to know if the young Iturbe could lend a hand.

Her response was skepticism. Teach the blind to shoot photographs?

“That’s crazy,” she remembers thinking. “I knew about photography, but what I didn’t know was how to teach blind people.”

Then, of course, she got on board.

Eyes That Feel

In 2013, Iturbe volunteered as a class assistant and eventually began leading the Mexico City course. It is offered two times each year to about 20 students.

Some have partial vision and no ability to distinguish colors or see things clearly. Others have lost their sight completely and doubt whether they can take photos at all.

Maria Iturbe.

“Many students are skeptical when they start,” Iturbe says. “They say: ‘Why should I take photos if I’m blind?'”

But the point of the class, says Iturbe, is to address these insecurities, and convince people that they can overcome their fears and do something completely visual. And in that sense, teaching a class of blind students isn’t so different from any amateur photography class.

“It’s a psychological process when you start,” Iturbe says. “You say to your students: ‘You’re going to do this activity which no one— including yourself— thinks you can do.'”

What her students eventually learn is that photography isn’t about what the world looks like. It’s like the images that many of her blind students still see when they dream.

“Images are created from within,” she says. “I just help [my students]find their internal compass.”

“Images are created from within,” she says. “I just help [my students]find their internal compass.”

At the beginning of the semester, Iturbe hands out cameras, which are loaned to students for the duration of the course. She then explains the fundamentals to her students, some of whom may never have used a camera before. She teaches her students to shoot by imagining their body as a tripod, centering the camera on their forehead or waist to find an axis on which to shoot.

Photo: Ojos Que Sienten

Shooting Without Sight

But how do her blind students find images to shoot? By relying on their other senses.

“When we go to the street we ask, ‘What do you smell? What do you hear?'” Iturbe says.

If it’s a portrait, students touch their subject. If it’s a landscape, they ask assistants in the class to describe a student’s surroundings before the photographer composes the shot.

“The class is about exploring your creativity by solving problems in different ways,” Iturbe says.

“The class is about exploring your creativity by solving problems in different ways,” Iturbe says.

It’s a message she takes to hear in her own teaching lessons. She often needs to find metaphors for photographic concepts that make sense to people who may not ever have been able to see. To describe the concept of focusing, for example, Iturbe will use the metaphor of a radio dial, which you twist to ‘tune’ in a station. For depth-of-field, she’ll stand in a line with class assistants and ask them to determine who is standing first, second, and third by listening to their voices. Depth of field, she’ll teach, is choosing which voice to focus on.

The approach seems to work. Her students have taken some remarkable photos: a puddle which appears to probe and stretch the viewer’s senses of perception; a portrait of a monkey in a serious pose.

“They’re not perfect shots with every detail,” she says. “They’re shots that you can feel. And they take you to places you’re not used to.”

Photo: Ojos Que Sienten

The Teacher Becomes The Student

To that end, she notes,the classes have had an outsized impact on her own architectural photography, teaching her how to employ her non-visual senses when shooting. Her students have taught her not just to see the photo, “but live the photo.”

She has learned to think about photography without using her eyes.

Now, Iturbe commonly will blindfold herself and herself when she takes a portrait, using her sense of touch alone before taking a shot.

“The connection is different because it takes away just the visual part, and you can see that in the portraits,” she says.

We have so much visual information every day that we stop connecting with the rest of our senses,” Iturbe observes.

Another project inspired by her teaching involves X-raying purses, which results in images that can only be seen in their totality at the end of the shoot

“We have so much visual information every day that we stop connecting with the rest of our senses,” Iturbe observes.

That’s something that teaching Ojos Que Sienten has taught Iturbe. In an age of endless distraction, we may look, but we’re no longer seeing. Thanks to the lessons her students have taught her, Iturbe has become a better photographer.

“It’s changed me a lot,” she says. “I’m now more present, both in the shot and in life.”