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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

Sex Is Better Now I’m Sick

Post-diagnosis, I'm having the best sex of my life, despite MS. But getting here wasn't easy.

Six years ago, I didn’t know about the degenerative disease lurking in my brain. My health hadn’t been great, but doctors chalked it up to post-viral fatigue, suggested I get some exercise, get out more, get a hobby. They ran blood tests, and sent me to an allergy specialist. Every result complied with the healthy diagnosis continually thrust upon me, but I knew something was wrong.

Then I was diagnosed with MS.

Before finding out the literal, physical limitations I have as a result of MS—such as intense fatigue, and near-constant nerve disturbances—I wasn’t thrilled about my sex life, but it also wasn’t a top priority. Despite being with a long-term partner, we had sex infrequently, and my overtures were the ones usually being turned down. Those rebuttals made me feel needy and insecure, but before diagnosis, I accepted the status quo.

MS changed the way I looked at my sex life. Finding out I was disabled pushed me to consider what I wanted to experience from life, especially life with a degenerative condition. And I wanted to experience sex.

Sex After Sudden Disability

The desire to experience a fuller sex life became even more urgent after a relapse left me numb from the waist down. With intermittent sensation in both of my legs, and sporadic nerve pain—ranging from electric shock prods to the spine to the feeling of a thousand needles pricking my thighs simultaneously—I worried what my sex life would look like, and if I’d even have one.

Finding out I was disabled pushed me to consider what I wanted to experience from life, especially life with a degenerative condition. And I wanted to experience sex.

I set about regaining my lost orgasm with a lot of solo work. It was a long and pretty lonely journey, with multiple moments in which I thought my sex life was doneso. Meanwhile, my relationship was suffering. My partner’s regular rejections of my overtures became even more personal and hard to take, post-diagnosis. I desperately craved an intimacy that I didn’t have. And with an incurable, unpredictable disease ready to pounce at any moment, I realized that the window left in which to develop my sexual side was time-sensitive.

Reclaiming My Sex Life

Even after my relationship failed, though, I refused to give up. Perseverance was key, and my nerves found new ways of sending signals as my body rewrote its wiring. And let me tell you something. When your body has been ravaged by the uncontrollable specter of illness, achieving a moment of pleasure is the truest triumph.

It was the first step to me reclaiming my sex life, which is today better than it has ever been. With a new partner, it’s the kind of sex life that I, as a disabled person, once believed to be impossible.

When your body has been ravaged by the uncontrollable specter of illness, achieving a moment of pleasure is the truest triumph.

A big part of improving my sex life involved accepting my new body: not just its painful limitations, but the strange sensations it creates on a daily basis. Which means sometimes accepting that sex just isn’t going to happen right now. Before, when I had a bad day of flaring symptoms, I would fixate on everything I couldn’t do or achieve in that moment, especially sex. But you have to feel good for sex to be good, as I have learned to accept from experience. So when fatigue is hung like a meat-hook from my skin, I don’t attempt intimacy, knowing it will do me more harm than good.

Never Give Up

It helps that my partner is supportive. Despite the anxieties that come from being intimate with a disability, he is never upset or impatient if I have to hit pause part way through, whether for an impromptu bathroom break caused by my irritable bladder, or a springing nerve pain reaching for my skin’s surface. He’s in no rush. He’s happy to take his time, always fine with switching things up if it’s not working for me, and never blames me if there’s an awkward moment or clumsy movement, which there will be.

And look, truth time: accessories matter. My vibrator’s more important that it every was before diagnosis. In fact, along with lubrication, it’s essential to my life as a sexually active disabled people.

The health of my sex life is not determined by [my] limitations: it is determined by how I manage them.

On a good day, sex is the ultimate escapism from the unconventional temple that is my body. It can be better than drugs, as endorphins wipe out my discomfort in a way that prescriptions can not. Yes, I have limitations, but as with so many things in chronic illness, the health of my sex life is not determined by those limitations: it is determined by how I manage them.

Being diagnosed made me realize that it’s okay to ask for what I want in my sex life. One day, my sensation might make sex even more challenging than it is right now, but that’s okay. I understand now that great sex doesn’t just happen. The key is to never stop trying.

Disability Essays

It’s Time For Hollywood To Rethink Disability

When disabled actors aren't cast for disabled roles, it doesn't just reinforce harmful stereotypes: it makes movies more boring.

I’m a movie buff. There is nothing better after a long day of writing than sitting down with some popcorn and getting lost in a good movie.

Since I have become disabled, I particularly enjoy watching movies where the main character faces what I go through on a daily basis. It makes it feel like someone else gets it, that I’m not alone.

Unfortunately, these characters are few and far between. What I am often faced with instead is a thoughtless ablewashed version of my disability.

I recently overheard an interview with Blake Lively about her role as a blind woman who regains her sight in All I See Is You. In particular, one of her comments stuck in my craw: she said she thought her husband in the movie was “generous” for taking care of her character while she was blind. Cue the inspirational music.

Blake Lively, of course, likely does think that the husband in question is generous for loving a disabled woman. But that’s the problem: her comment not only reinforces the stereotype that the disabled can’t care for themselves, but that they are less worthy of love. The idea that a non-disabled person should be relegated to sainthood for tolerating his blind wife (whom presumably he loves for more than her vision) is offensive no matter how you cut it.

Let’s put it another way: can you imagine a Hollywood actor being so oblivious that they’d suggest in an interview that a character in a movie was “generous” for loving a person of color, or an LGBT person? If they did, they’d be rightly pilloried. Yet when Blake Lively says it’s “generous” to love blind people—and, by extension, all disabled people–no one even blinks.

Her remark got me wondering, yet again: Why doesn’t Hollywood cast more disabled actors? We live our reality every day, so why are we so rarely allowed to step in front of the camera, and act out our stories? And where is the outrage about it?

As a country, we have largely decided that it’s inappropriate to cast white actors in non-Caucasian roles, yet there has been no such outrage over casting non-disabled actors into disabled roles.

In the 2016 Ruderman White Paper on the Employment of Actors in Television, the authors note: “A white actor on screen in blackface is unheard of nowadays because we as a nation recognize that there is absolutely no reason why a black actor wouldn’t play that part.” This goes for other races too. Consider the backlash that occurred when Scarlett Johansson was cast to play a Japanese woman in last year’s Ghost in the Shell, or the controversy around the Wachowski’s controversial decision to fit Caucasian actors with prosthetics so they could play Asian parts in Cloud Atlas. These are both examples of whitewashing. As a country, we have largely decided that it’s inappropriate to cast white actors in non-Caucasian roles, yet there has been no such outrage over ablewashing: the casting of non-disabled actors into disabled roles.

“It’s as if the nation, in general, dismisses the abilities of people with disabilities to such a degree that it doesn’t even occur to them to wonder why they are seeing Artie in Glee played by the able-bodied Kevin McHale,” the authors conclude.

Of course, I’m not saying non-disabled actors can’t portray disabled people. With enough research and method and talent, any actor can be successful any role: consider Daniel Day-Lewis’s Oscar-winning portrayal of Christy Brown in My Left Foot, for example. Even so, should they be cast, when disabled actors would kill for the same roles, and have just as much if not more insight into their characters? Because by shutting disabled talents out of Hollywood, we’re also being shut out of the conversation.

By shutting disabled talents out of Hollywood, we’re also being shut out of the conversation.

And it’s not just actors, either. Behind the camera, there need to be opportunities as well. Maybe actually working with more handicapped people would wake Hollywood up to the fact that the disabled don’t exist to be pitied, or taken care of: we’re quite talented and competent, actually. And maybe then, we wouldn’t see so many dumb, boring movies about disabled characters pining away for their pre-handicapped lives. Every time I see these scenes, I want to scream at the characters: “Come on, people! There is so much of life left to live. Get out there and live it!’

But the news isn’t all bad. Sometimes, when I turn on the television, I’m even hopeful that things are changing.

Micah Fowler as J.J. on ABC’s Speechless.

Peter Dinklage is widely hailed for his role as Tyrion Lannister in HBO’s Game of Thrones. Like Dinklage, Tyrion Lannister has dwarfism, but thanks to the actor’s skilled portrayal, that aspect of the character very quickly blends into the background. That’s because Dinklage gets it; he lives with his dwarfism every day, and it doesn’t define him.Same with Micah Fowler on Speechless, who has Cerebral Palsy and plays J.J., a typical teen who also happens to use a wheelchair and a communication board. There’s nothing about the way Speechless is written or directed that makes J.J. seem “less than” the rest of the cast: it’s obvious from the start that he’s as vibrant and equal a member of the family as everyone else.

Get it together, Hollywood. It’s time to let disabled actors help tell their own stories.

Hollywood should aspire to make these examples the rule, not the exception. When disabled roles are filled by disabled actors, they usually make their characters more interesting and multi-faceted, which, in turn, makes the movies and shows they’re cast in better. These actors are simply more qualified to show the reality of disability: it’s just another part of someone’s life. Disability doesn’t wholly define anyone.

So get it together, Hollywood. It’s time to let disabled actors help tell their own stories. Not because we’re “inspiring,” or as a token bit of casting, but because we’ve earned that right. Movies can do better than Blake Lively. Hollywood, you can be better if you try.

Essays

2017: Our Favorite Essays

A werewolf father, a prophet from outer space, and what Selena Gomez can teach us about lupus: these are just a few of our favorite essays of the year.

When illness or disability has touched your life, one of the hardest things you can do is talk openly about it. Yet many brave people do, and by telling their stories, they help break the stigma surrounding health conditions. In 2017, Folks was privileged to provide a platform for dozens of amazing people–including a globetrotting fashion photographer, an international bird watcher, and the work-at-home Dad of a diabetes icon–to tell stories about what illness and disability have taught them about living life to its fullest.

Beautiful Girl On A Distant Planet

In the ’70s, my best friend seemed like a prophet and a poetess from outer space. But she had schizophrenia, and as her symptoms worsened, I failed her.

The Weight: Caregiver Fatigue And Diabetes

When your kid’s life is on the line, caregiving is a 24-hour-a-day job. What do you do when that job wears you down?

My Blade Runner Eyes

Photographer Nadya Lev was the toast of the fashion world, but it was only when she started going blind that she really learned how to shoot.

How Charlie Brown Helped Save My Best Friend’s Life

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

When Lupus Happens To You

In today’s celebrity culture, it’s all too common to compare yourself to the glitterati… but that cuts both ways when you have an autoimmune disease.
My Father The Werewolf

When I was a kid, my Dad taught me all about werewolves. Little did I know he was preparing me to understand his depression.

How Birdwatching Helps Save Me From Chronic Pain

‘Peace and patience’ are rare commodities when you live with pain… but a day spent birding is an extra day added to your life.

Doctors, Stop Gaslighting Women in Pain

For almost 4,000 years, doctors have been treating women in pain less seriously than men. That needs to stop. Now.

From Colorado With Love

After chemo, Rebecca Thomas thought she had met the perfect man. But cancer had profoundly changed what she needed from love.

Proof Of Life

I never thought I was photogenic. Then I started chemo, and learned to appreciate how precious photos of me and my family really were.