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Putting A Funny Face On Crohn’s Disease

Samantha Irby has made a career out of being witty about the unmentionable: what happens when you have problems on the toilet.

The pain was so severe that Samantha Irby was convinced she was having a miscarriage. Except for that pain, though, she had no reason to believe she was pregnant.  After a lifetime of having what she assumed was just a weak stomach, something felt different.  “I was kneeling on the floor in the bathroom and I was like ‘This is not a normal pain,’’ Irby, now 37, says of her 2005 episode. “I looked down and my stomach was distended, it was hot to the touch.”

A scan at the ER revealed that her intestines had swollen and twisted into a pretzel shape. After a two-week hospital stay, during which she had a capsule endoscopy (“You swallow a giant plastic pill that has a camera in it. It moves through until you finally poop the camera out. At the time I was too sick and scared to acknowledge how cool that is.”), she was given an indirect diagnosis of Crohn’s disease, an inflammatory bowel disease that is particularly rare among black people.

It took years of experimentation with lifestyle changes and drugs to get to remission, but the experience had a creative upside. A few years after her diagnosis, Irby started a blog called Bitches Gotta Eat, where she matter-of-factly detailed her bathroom-intensive life along with entries about friendship, dating, and sex. “I got messages from people who were like: ‘Thanks for putting a funny face on a thing that is not always funny.’ Once I started getting positive feedback I thought, ‘I can write about this more.’”

Since starting her blog, Irby’s has since published two books of essays, 2017 New York Times bestseller We Are Never Meeting in Real Life as well as Meaty, which is getting re-released by Random House in April. Irby is also working with TV writers Jessi Klein and Abbi Jacobsen turning Meaty into a comedy series for FX. Now living a quiet life in Kalamazoo writing and step-mothering,  Irby spoke with Folks about the practical daily matters of Crohn’s and the doctor who made a difference in her life (even though she originally told him he was too cute to treat her.)

Irby is the author of We Are Never Meeting In Real Life and Meaty

Tell us a little about your Crohn’s disease. What are your triggers?

Rainy days—my body feels like it’s in traction sometimes. Super soft cheeses: they’re so delicious but I know that’s oing to be a problem. And, what will sometimes give me the hardest time is super healthy food like brown rice. I can’t. It just comes out looking the exact same and with a vengeance. If I sit and eat a bunch of carrots and hummus, which is delicious, I guaranteed I’m going to be in trouble later. That’s what’s so funny—sometimes when people catch wind [about your chronic illness] they want to email you all this unfounded advice. They’re trying to tell me what to eat and I’m like, “Great I get it,” but sometimes the only thing that will have the smooth ride all the way through is white bread, bananas and pasta.

You have joint problems an addition to the Crohn’s too, don’t you?

Yeah, peripheral arthritis, which is a degenerative joint disease. When my Crohn’s is active, the joint pain is excruciating. It’s like insult to injury to have to sit on the toilet all the time and have your knees hurt.

Your wife was a reader of your site before you married her. Do you think that helped her understand what you were going through.?

I think that at least having a base knowledge of Crohn’s makes some of the conversations easier. Like, I know you know I have diarrhea but you also need to know that if I need something from downstairs you might need to get it while I try to get my knees and joints together. So my blog gave her a good blueprint of what life together might be like.

Who were some doctors or practitioners who made a difference in your life? What did they do?

When I first went to the ER in 2005, I had to sleep with this Nasogastric tub up my nose.  I was totally disoriented and had no idea what was up. The next morning, my super hot GI doctor came in and said, “Hey, I’m Dr. Mehta, it’s nice to meet you.” I was like: “No, you can’t be my doctor. I can’t be talking to you about my butthole!” He laughed and we hit it off.He really stuck to my intestines and not my myriad other problems.

It’s hard to go to the doctor as a fat person and have them try to treat your weight rather than help you.

It’s hard to go to the doctor as a fat person and have them try to treat your weight rather than help you. I went to the doctor for an ear infection a few months ago and I got a referral to the new bariatric clinic, and I was like “Okay…but can you just work on my ears?” Both he and Lori Jackson, my GP who it took me too long to find, were great because they stayed focus: “This is the problem we’re dealing with and this is what we’re going to fix.”

It’s so refreshing as a patient dealing with a long term chronic thing to have a doctor who wasn’t trying to shame me about my weight the time, especially when their job is to look into my mouth and butt all the time.

What resources do you wish you had when you were diagnosed that you didn’t?

I wish I had just known other people who were dealing with Crohn’s. That was part of my impetus to write about it. It’s one thing to meet up with a bunch of old men who have Crohn’s, but it would have been nice to know there were so groups for black girls with IBD. And it turns out there are—they’ve reached out to me, they’ve emailed me.

What advice would you give to other young adult women who are recently diagnosed?

Find a doctor you trust. Listen to what your doctor says and what your body says. Take other peoples’ advice with a grain of salt. Especially in the Internet age, as soon as you tell somebody you have something going on, the first thing they want to do is regurgitate some bullshit that they read somewhere. With gut disease, people don’t think of them as being real, so they say things like: “You just have a weak stomach, you just need to drink apple cider vinegar every morning.” Don’t listen to anybody else’s armchair advice. If it feels good and works for you, great, but don’t feel pressure to listen to that one person on Facebook who thinks he or she knows a lot about organic groceries.

This interview was edited and condensed for publication.

Profiles

What Cats Can Teach Us About Living Life When You’re Sick

Cat behaviorist Aimee Malpass, who has Crohn's Disease, says that cats are the kings and queens of mindful living. They should inspire us all.

Mindfulness is more than just a buzzword on the blogs of health gurus… and cats are the original experts, according to Aimee Malpass.

Aimee, who works as a feline behaviorist, says we can learn a lot from our furry friends.

“Cats show us how to take it easy, she says. “to only do what we can do, to take naps and live in the moment. My own cats and the ones I work with have kept my head above water so many times: they are the kings and queens of mindfulness.

Aimee Malpass.

Aimee became interested in the field of animal behavior while training as a vet nurse. She saw many animals with challenging issues, and was required to assist with putting a cat to sleep due to its behavior. She was heartbroken over what she had witnessed.

“I didn’t want to see cats die for being cats. I felt so powerless to help. I saw the problem, but I didn’t realize there was a solution until I discovered the TV show, My Cat From Hell. By that point I was having issues with one of my own cats. The vet prescribed antidepressants, but nothing helped She basically just sat in the corner all day. So I asked if there were any animal behaviorists I could contact for help, but none of the staff knew of anyone. I was on my own. I realized then there was a need.”

At that point, Aimee enrolled in a Bachelor of Science, majoring in Animal Behavior, and started working with problem animals soon after she graduated.

“[Cats] are the kings and queens of mindfulness.”

Aimee’s work allows her to be flexible, which is necessary for her own health. After suffering mysterious pain and fatigue for close to six years, she was finally diagnosed with Crohn’s Disease, an inflammatory bowel disorder, in 2015. Unfortunately, by that point three quarters of her large bowel was ulcerated and inflamed, and use of the chemotherapy drugs Remicade and Methotrexate have become necessary to help keep the disease under control. The symptoms are persistent and unpredictable, so running her own business allows Aimee to fit her job around her abilities. And working with cats has taught her about looking after herself.

“I think watching a cat sleep in the sun, chest slowly rising and falling as they do nothing else but live in that moment of total bliss and relaxation: that’s something we should all aspire to. If we all took it as easy as our cats, we’d have a better time!”

Aimee says the nature of the work is a blessing in disguise in more ways than one. Her day-to-day job involves going into people’s homes to work with them and their animals, and the hours can be modified depending on her own wellness.

“The job tends to be piecemeal, which actually works well. Whether it’s doing behavioral consultations or caring for cats, I never have to go to a place and stay there for 8 hours a day, which is a thing I would really struggle with, especially if I’m having a bad flare up. Having a job that is only a couple of hours a day in which I get to do something that is not highly stressful really helps!”

As part of her job, Aimee helps owners learn to understand their cats’ needs.

She says a typical day might involve assessing one client’s needs. She begins with the owners, asking them lots of questions about their cats and how they act, both their normal behavior, and what the problem behavior might be. A lot of the time, she can track a cat’s behavior issue to their environment, rather than something within the animal itself.

“That means it’s more about modifying the environment and letting cats be cats rather than “training” like you would do with a dog, although training cats is entirely possible too!”

Assessing the cat involves watching how it behaves, how it interacts with its owners, and what’s going on in its environment. Aimee then makes initial suggestions of what could be causing the issue, which is often something like inappropriate urination or unpredictable aggression.

Once that meeting is over, Aimee heads out to write up a full report for the client. As well as the behavioral consultations, she looks after cats while their owners are on holiday, so her day will often consist of a few other necessary pitstops for food and cuddles.

“I think watching a cat sleep in the sun, chest slowly rising and falling as they do nothing else but live in that moment of total bliss and relaxation: that’s something we should all aspire to.”

At home, Aimee has three cats of her own to keep her company.

“They honestly keep my head above water sometimes with their gentle but very loud purrs. The brothers, Tobi and Nimbus, are Burmillas–part Burmese, part Chinchilla Persian — are very affectionate and demand a lot of my love, which is the best feeling when you’re sick and not really feeling like you’re worth much. I know they couldn’t live without me and I couldn’t live without them, as dramatic as it sounds. The girl is Bobbit, she has a sad story in that her tail was burned off when she was a 4 month old kitten, so it had to be amputated. She has a lot of behavioral problems because of this and she can be very stressed and is very wary of people. I have made so much progress with her though, and she is a very cuddly cat now.”

Aimee playing with a client.

When Aimee is having the sort of sick day that keeps her at home with the cats, she likes to play video games, and she finds a creative outlet in cosplay, making costumes of the characters she enjoys. She doesn’t often get the chance to wear what she makes, but says the process of researching and making a costume is very cathartic.

But her true love is the cats, and her work with them and their owners. She says the process of teaching people about how cats operate is deeply rewarding.

“It’s great when you explain to someone why their cat is doing a behavior that they don’t like, and showing them that it’s not out of malice or that their cat doesn’t like them. It’s great when you see the lightbulb go on in their head when they realize that their cat is scratching their couch because of an instinctual need and not because they are purposefully wanting to be annoying.

The most rewarding part though is knowing that I’ve helped these cats, and there is one less being put to sleep or rehomed because their owners failed to understand the behaviour.”

As for mindfulness, Aimee recommends taking a leaf out of your cat’s book.

“They’re always very much in the moment, focused on one things, whether it’s food or a toy or having a real good nap. We should all take care of ourselves that way.”

The Good Fight

From AIDS to Zika, New Books Teach Kids About Conditions

Whether Crohn's disease, lactose intolerance, or childhood depression, a growing number of children books feature diseases and ailments as their subjects.

In her picture book Even Superheroes Get Diabetes, author Sue Ganz-Schmitt tells the story of a boy named Kelvin who hates the constant fingers pricks and shots required by his diabetes. But with the help of a (medically accurate) insulin pump and a mysterious doctor, he becomes Super K, flying around the world with the doctor delivering insulin to other kids with diabetes.

Ganz-Schmitt wrote and subsequently self-published the story in 2007 after watching one of the families in her kids’ playgroup cope with type 1 diabetes. The son, Kaden Kessel, was weeks away from his third birthday when the family got the news. Suddenly his parents, who also had a newborn, had to constantly monitor his blood sugar to keep him healthy.

Sue Ganz-Schmidt, author of Even Superheroes Get Diabetes.

When Ganz-Schmitt searched for a story about childhood diabetes, she found picture books that offered comfort to families but nothing that went beyond comfort to actually inspire them. After attending events with JDRF, an organization that funds type 1 diabetes research, Ganz-Schmitt says she was struck by how empowered the kids were in speaking about diabetes, almost like real-life superheroes.

“When I first saw it, I was kind of in awe because … even though the kid becomes a superhero, he looks like me in the book and it’s based off of my story,” says Kessel, who’s now 17. The book was so inspiring to Kessel that he used it in sixth grade to become a sort of diabetic superhero himself, bringing it into school to defend a young classmate from being bullied for his diabetes in class.

While most picture books introduce kids to story and language, perhaps imparting a few feel-good lessons along the way, ones about medical conditions serve a deeper purpose.

While most picture books introduce kids to story and language, perhaps imparting a few feel-good lessons along the way, ones about medical conditions serve a deeper purpose: Helping kids with a medical diagnosis understand what’s happening to their bodies or educating young readers about medical conditions a relative, friend or classmate might have. Not to mention teaching empathy.

Cover of My Grandpa Had A Stroke.

Some of these books have such niche appeal that they’re self-published. However, the American Psychological Association has a publishing imprint called Magination Press that specifically publishes fiction and nonfiction books for kids and teens around mental health issues, including medical diagnosis and also topics like mindfulness and learning disabilities.

“With any kind of physical illness or mental health issue, there’s an emotional, social and mental component to that,” says Kristine Enderle, director of Magination Press. Its medical-themed picture books include Danny and the Blue Cloud: Coping with Childhood Depression (by James M. Foley, DEd, 2016) about a bear learning “Feel-Good Rules” for dealing with depression, and My Grandpa Had a Stroke (by Dori Hillestad Butler, 2007) about a little boy who must learn to adapt after his grandfather has a stroke.

Danny and the Blue Cloud, a book that teaches kids about depression.

“We try to empower kids,” Enderle says. “We never really want to tell them what to do or how to feel or how to fix it, but we hopefully provide them with enough information and context that’s all rooted in evidence-based psychology.” To that end, most Magination Press titles are written by child psychologists, counselors or other medical professionals and include a note to parents on how to talk to kids about these issues and organizations they can tap for additional resources.

“We feel like there’s great power in this information and understanding the psychological and emotional side of things,” Enderle adds.

Frank Sileo is a New Jersey-based psychologist who’s written several picture books for Magination Press. He got the idea for his first picture book (published by a different publisher, who’s now defunct) from doing biblio-therapy with his young patients. “[With biblio-therapy] you read a book to a child about a particular problem, talk about the problem, and it validates their thoughts and feelings,” he explains.

Toilet Paper Flowers, a book about Crohn’s Disease.

When patients asked for a book about Crohn’s disease, Sileo couldn’t find one. Instead, since Sileo suffers from Crohn’s himself, he decided to write a picture book and Toilet Paper Flowers: A Story for Children about Crohn’s Disease was born. In it, a little girl with Crohn’s disease spends so much time in the bathroom, she makes toilet paper flowers and shares them with her friend.

Sileo’s second book was inspired by a patient who was bullied for being allergic to regular daily milk, so Hold the Cheese Please! A Story for Children about Lactose Intolerance. The story teaches kids about lactose intolerance (not to be confused with an allergy, as Sileo points out) and encourages them to accept each other’s differences. “It’s hard to be a kid and not have those things [like milk],” Sileo says, peppering his speech with medical puns.

Ganz-Schmitt’s second book, The Princess and the Peanut: A Royally Allergic Tale, also tackles food allergies. When she self-published the book in 2011, some parents erroneously believed that food allergies were made up (like Santa Claus or the Easter Bunny, Ganz-Schmitt quips) and didn’t understand their severity. “I was just so astounded what those families [with serious food allergies] had to go through,” she says. “Every bite was walking into a minefield for them.”

Full cover of Even Superheroes Get Diabetes

Ganz-Schmitt hoped by that educating children about food allergies, even those who didn’t have allergies themselves, those children will look out for siblings, friends or classmates who could suffer serious consequences from exposure to allergens. “‘Oh no, Mom, you can’t put peanuts in those cookies!’” she says. “They get it immediately and they really join the community of people who care for these children.”

As for Kessel–the original Super K–he’s now the JDRF walk ambassador for the Los Angeles Walk and is working to get the Latino community to join the walk and gain better access to medical care, similar to how his picture book counterpart helped others with diabetes.

He went through a rough period around age eight or nine where he wondered why he’d gotten a disease that doesn’t run in his family. Now he takes a more philosophical approach, pointing that the perseverance people with diabetics learn helps many of them excel in elite sports and business. “It’s hard and it sucks sometimes and none of my friends have it–all of that is true–but I feel like it’s been a blessing in disguise because the things I have learned from it,” he says.

And it all started with a book. For further reading with your kids on living with conditions, we suggest starting with these:

  •    AIDS: “The Gathering Tree” by Larry Loyie with Constance Brissenden, illustrated by Heather D. Holman, Theytus Books, 2006
  •    Alzheimer’s disease:Always My Grandpa: A Story for Children About Alzheimer’s Diseaseby Linda Scacco, PhD, illustrated by Nicole Wong, Magination Press, 2005
  •    Autism: “All My Stripes: A Story for Children with Autism,” by Shaina Rudolph and Danielle Royer, illustrated by Jennifer Zivoin, Magination Press, 2015
  •    Cancer:When Billy Went Bald” by Julie C. Morse, illustrated by Alexandra Higgins, Skyscraper Press, 2012
  •    Crohn’s disease: “Toilet Paper Flowers: A Story for Children About Crohn’s Disease” by Frank J. Sileo, PhD, illustrated by Martha Gradisher, Health Press (NA), 2005
  •    Depression: “Danny and the Blue Cloud: Coping with Childhood Depression” by James M. Foley, DEd, illustrated by Shirley Ng-Benitez, Magination Press, 2016
  •    Diabetes: “Even Superheroes Get Diabetes” by Sue Ganz-Schmitt, illustrated by Micah Chambers-Goldberg, Dog Ear Publishing, 2007
  •    Down’s syndrome:47 Strings: Tessa’s Special Code,” by Becky Carey; illustrated by Bonnie Leick, Little Creek Press, 2015
  •    Food allergies: “The Bugabees: Friends with Food Allergies” by Amy Recob, illustrated by 64 Colors, Beaver’s Pond Press, 2009
  •    Food intolerances:Woolfred Cannot Eat Dandelions: A Tale of Being True to Your Tummy” by Claudine Crangle, Magination Press, 2014
  •    Lactose intolerance: “Hold the Cheese Please! A Story for Children about Lactose Intolerance” by Frank J. Sileo, PhD, illustrated by Martha Gradisher, Health Press (NA), 2009
  •    Leukemia: “Chemo to the Rescue: A Children’s Book About Leukemia” by mother-daughter duo Mary Brent and Caitlin Knutsson, Authorhouse UK, 2008
  •    Heart defect: “Riley’s Heart Machine” by Lori M. Jones, illustrated by Julie Hammond, Guardian Angel Publishing, 2012
  •    Post-traumatic stress disorder (PTSD): “Why is Dad so Mad?” by Seth Kastle, illustrated by Karissa Gonzalez-Othon and “Why is Mom so Mad?” by Seth Kastle and Julia Kastle, illustrated by Karissa Gonzalez-Othon, both Tall Tale Press, 2015.
  •  Stroke: “My Grandpa Had a Stroke” by Dori Hillestad Butler, illustrated by Nicole Wong, Magination Press, 2007
Health & Fitness

Feminism, Weight Lifting, and Crohn’s Disease

Two years ago, Kate Montgomery was ashamed of her looks and could barely get out of bed. Now, she's the strongest and sexiest badass at the gym.

Wearing a t-shirt that says Wild Feminist, a massive smile, and a tiny silver dumbbell around her neck proclaiming “Me vs Me,” Kate Montgomery is no one’s picture of chronic illness.

The 34-year old was diagnosed with Crohn’s Disease at 22. The necklace is a description of the power play between herself and her body; a fight she’s come close to losing multiple times.

Kate has spent much  of the last decade in the  hospital, suffering through dangerous infections, four surgeries, and dangerous weight loss.

Up until May 2015, she weighed around 92 pounds. Unable to eat, she was fed through a tube directly into her chest. She couldn’t get out of bed unassisted.

The Kate of today is a different story.

Kate Montgomery.

Two years ago, her doctors made a devastating decision that probably saved her life: her large intestine needed to be removed.

Having already experienced a temporary ileostomy–where her bowel was rerouted and attached to her stomach wall so that waste emptied into a colostomy bag–Kate was shattered by the news.

While the procedure removed five feet of intestine from her body, it essentially removed her disease. But she says it also shredded her self-esteem.

“I thought no one would ever be attracted to me again when they found out about it. I was ashamed of it, it just mortified me. I would cry just thinking about it.”

But now, Kate says she’s the healthiest she’s ever been, and the ileostomy no longer upsets her as it once did.

“It’s strange to think about feeling bad about it, because I’ve done a huge amount of work on being okay with me, and I don’t really care anymore. I’ll tell people and explain it.”

The years she spent battling the disease have made her strong both physically and mentally. Under advice from her physician, she started to weight train in order to fix her bone density.

“The medication I was on affected my bone density, and overall I was left very weak,” she says. I’d never weight trained before so I didn’t know what I was doing! But I love it now.”

“Regularly pushing myself in the gym doesn’t feel that hard, really. I know how mentally strong I am from surviving months in hospital and years of being bedridden, and constant pain. After my last surgery they took away my epidural really early but hadn’t added extra pain relief to replace it, so I could feel the full force of having been cut open days before. I had to get through about eight hours counting in 5 second intervals, like get through this five seconds, then the next five. Knowing I survived that means I’m already confident I can handle anything in the gym. Nothing will ever will ever be worse than that day.”

Now, Kate says she keeps hitting new Personal Bests, seemingly every week.

“My goal was to deadlift 100kg (220 pounds), which I’ve just done!” she says. “Next up is double my weight, which is about 126kg (227lb). Considering at one point I couldn’t lift myself out of bed, it’s amazing to be able to push myself now.” 

Kate says the strength that comes from weight training comes first, but being able to look in the mirror and like what she sees is also hugely important.  

Why should I have to feel like this illness that has left me so scarred–figuratively and literally–makes me any less beautiful or worthy than anyone else?

“Having positive self-image is constant work. I’m very lucky in that I became well enough to work out and lifting weights has changed my body, in terms of my strength and my shape,” she says. “But I definitely don’t look like a Victoria’s Secret model – I have broad shoulders, strong arms and narrow hips, and I’ve always been self-conscious of that. It’s just been a process of deciding to not feel bad about that anymore and own how I look and constantly correcting my thoughts when I feel bad or say mean things to myself.”

“I got sick of being ashamed. Sick of feeling like there was something wrong with how I looked. I decided that needed to change. Last year, I just decided to stop feeling like that. It’s not an overnight process, but I’ve worked at it every day. Because why should I have to feel like this illness that has left me so scarred – figuratively and literally – makes me any less beautiful or worthy than anyone else?”

“I got sick of being ashamed. Sick of feeling like there was something wrong with how I looked.”

Kate says being a feminist also played a big part in making these changes.

“Part of feminism is being body-positive, about women of all shapes and sizes. And it’s hard to be an advocate for that if you’re really not positive about your own,” she says. “One of the biggest blessings of being sick and recovering is not giving a fuck how much space my body takes up anymore. I used to feel bad about being taller and broader than most of my friends; women are taught by society to take up as little space as possible. After you’ve literally taken up as little space as your skeleton allows, taking up more space feels defiant. I love it. It’s a blessing to learn you’re entitled to take up exactly as much space as you need to in this world, with your size, or your voice.”

Kate’s going back to school this year to study psychology. She wants to be able to share the knowledge she’s gained from being sick, and to put that into practice helping others with chronic illness.

“I think my experience will make me better able to help and relate to people,” she says.

One of the biggest blessings of being sick and recovering is not giving a $%@! how much space my body takes up anymore.

“Chronic illness isn’t a normal part of life and I believe everyone who has it would benefit from professional help to cope with it, mentally. My therapist has changed my life in terms of my ability to accept and cope with what Crohn’s has thrown at me, from the day to day stuff, to the big things like hospital and surgery. Having the temporary ileostomy previously meant I could directly compare how shattered that left me, with how well I’ve coped now, and the major difference is the therapy I’ve had. I’ve done all the work, and I’ve worked damn hard. I want to be able to do that for other people.”

Kate says she’s now in a ‘weird limbo’ where she’s not really sick anymore. But she constantly reminds herself how hard she’s worked to earn her health.

“I don’t have pain anymore, so I feel weird sometimes saying I have a chronic illness or putting myself in with people who are still grinding through their days, but I’m also not well, and I have to be much more careful about my health than ‘normal people’. But I feel guilty talking to other sick people sometimes, because I’m so much better. I have to remind myself that I deserve to enjoy being better, that I’ve earned it, and that I’ve sacrificed and lost a lot.

I’m allowed to just be grateful and happy that I’m here now.”

Profiles

The Kid Who Couldn’t Eat

A year without eating only made John Capecelatro a better chef... and a better friend.

Still boy-faced despite his luxuriant beard, John Capecelatro will tell anyone who listens he has two passions: coding and cooking.

As a product engineer for PillPack, the home pharmacy healthcare startup, John spends his days serenely lost in a cathode maze of code, usually with headphones on to shutout the world outside. (Disclaimer: Folks is owned by PillPack.) But it’s when you watch him in the kitchen, whisking sauces and flipping sautés with flair, that you suspect that maybe John was really born to cook, not code…. a theory borne out by the fact that he is the son of a classically-trained chef.

John-7

John practices his knife skills.

Ask John, though, and he says that both cooking and coding satisfy the same part of his brain. Whether programming a new feature for PillPack customers, or grilling some barbecue for his friends, “there’s a very real relationship between how hard you work and what you get in the end,” John says. “They’re both really very meditative to me.”

Still, even John has to admit that cooking, not coding, is slightly more precious to him. Programming’s a solitary act – just you, a workstation window, and the cold binary logic of the machine. Cooking, though, is inherently social, and you only need to hear John’s laugh to know he’s a social guy.

“There’s just nothing I like more than cooking a big dinner and having beers with some friends,” John says.

That’s something most of us value, but in John’s case, there’s a special reason why he put so much stock in the sensuality and sociability of food. Throughout his life, there have been months at a time when John couldn’t eat food at all.

Getting Crohn’s

John has Crohn’s Disease, an inflammatory bowel disease that can cause abdominal pain, acute diarrhea, fever, and even skin rashes and arthritis. It’s more common than you’d think. About 3 people out of every thousand have Crohn’s Disease, with a surprisingly strong political representation including President Dwight D. Eisenhower, House representative Dennis Kucinich, and former mayor of Boston, Thomas Menino. Despite this, and his natural likability, John says he’s never really thought about a career in politics. But he has spent a long time dreaming about food, especially when his Crohn’s diagnosis required him to subsist without food for weeks on end.

John-17

Glasses-off.

It was a blissful summer of wake boarding and water skiing when John first showed symptoms of Crohn’s Disease. Only nine at the time, John was spending the months between third and fourth grade at his family’s lakeside cabin near the Adirondacks when he started having searing stomach pains. “It was very different from the typical third grader’s self-diagnosis of ‘I don’t feel good!’” remembers John. “I was spending a lot of time in pain on the toilet. And it was scary. As a kid, you have just so little context. You don’t know: is this just a stomach flu, or is something systemically wrong with you?”

A doctor soon confirmed the latter. Along with having Crohn’s Disease, John had a raging abscess infection that required surgery, and loads of pills. And then, for quite a few years, John’s Crohn’s Disease lay dormant. It didn’t really affect his life too much: he wasn’t known, for example, as the kid with Crohn’s Disease. “My friends knew, I think, but I never had this internal debate about whether I should tell people,” he says. “It had no physical symptoms, so it just never came up.”

A month before he started his junior year of high school, though–during yet another blissful lakeside summer in the Adirondacks–John’s Crohn’s Disease stopped being so considerate.

“I’d just learned to barefoot water ski, which involves the boat going extremely fast… people break bones all the time because that’s just how fast you’re going,” John recalls. Flying through the air and slamming hard against the water on his side, John didn’t break any bones, but he seemingly ruptured something. He had to be dragged back onto the boat; the agony almost made him pass out.

Even John's bike gear is covered in food references.

Even John’s bike gear is covered in food references.

A Year Without Eating

John’s never been quite sure if that incident caused, or merely exacerbated, the Crohn’s flare-up that he spent most of the next year fighting. At the very least, it wasn’t clear right away what was wrong. As the pain grew, and John grew weaker, his doctors spent the next few months trying to treat his Crohn’s with what had worked before: mostly Prednisone. John started shedding weight: between summer and winter, he lost 55 pounds. “There were times when I’d get on the scale at night, and see I’d lost a pound or two since the morning,” he says. “It was that rapid.”

By December, John and his family were so desperate for some kind of improvement, they flew out to visit a doctor in Cleveland who’d had some experimental success treating Crohn’s with bacteria. “He took one look at me, and said: ‘Bad news, this isn’t treatable by any course of medication.’”

Surgery followed surgery. The doctors removed a small infected loop of John’s bowel. One consequence of the surgery was that while his bowel healed, John couldn’t eat food. He got all of his nourishment delivered directly to his veins through TPN, a sort of nutrient slurry that he carried around in huge backpacks and which was pumped directly into his body through a PIC line. (On his arm, John still has a small constellation of scars, showing where the PIC line ran to his heart.)

Flipping some vegetables in the kitchen.

Flipping some vegetables in the kitchen.

Between his multiple surgeries, John went the better part of a year never eating anything at all. His longest streak was 74 days in a row: an eternity for a teenager. “Physically, you’re not hungry at all, so technically you’re fine,” he remembers. “But emotionally, you’re constantly starving, because there’s that dopamine-addled part of your brain, crying out for a hit of your favorite food.”

More than just the physical pleasure of eating, though, John says the hardest part of his year spent not being able to eat wasn’t the starvation… it was the loneliness. “If you think about it, so much of our life is structured around food: it just has a huge social component,” John says. “And that’s doubly true when you’re a teenager. So much of a high schooler’s social life is eating pizza, or pounding down wings.” And while John was lucky enough to have friends who didn’t ostracize him for being different, every empty plate set for him at a restaurant or at a family dinner was a reminder that he was missing out on something. That he “couldn’t participate in something that is just an intrinsic part of the human experience.”

Savoring Food Again

These days, John’s Crohn’s Disease is well managed. Asked if he has any dietary restrictions, he laughs. “I eat whatever the fuck I want!” (That said, he has a particular fondness for Sour Straws and Sour Patch Kids.)

John relaxes with a friend.

John relaxes with a beer and a friend.

But even so, John has never forgotten how intertwined food and friends are in the tapestry of his life. Which is why, when John’s not coding, he’s usually found in his kitchen or the backyard grill, surrounded by friends, frying up a plate of Nashville style hot chicken, smoking some pork shoulder, or whipping up some Utica style greens.

 With Crohn’s Disease, there’s always the possibility that, sometime in the near future, John might again be staring at an empty plate with every meal. To John, that just makes every meal cooked and shared with his friends all the more savory.

All photos by Jess Benjamin.

The Good Fight

Crafting Through Chronic Illness

Untold numbers of people suffering chronic conditions are turning to Etsy to find purpose and a livelihood through illness.

Balancing a chronic illness and traditional employment isn’t easy. For those with an artistic streak, some turn to platforms like Etsy to create on their timeline and sell to a global audience.  

Lucy Blair measuring her hippos.

Lucy Blaire measuring her hippos.

In 2006, when Lucy Blaire was diagnosed with Crohn’s disease, she lived in Boston with her boyfriend (now husband), working full time as a seamstress. After her diagnosis, she continued working, but taking 22 or 23 pills a day made it a challenge.  

“The medication made me feel terrible, the disease made me feel terrible,” Blaire says. “Continuing to work on someone else’s schedule was nearly impossible.”

After trying several different medications, seeing several doctors and struggling through work, Blaire and her boyfriend moved to upstate New York to focus on her health and be closer to her family. “Everything was so new, you have to try a billion different things medication-wise until you find something that works for you,” she says.

Blaire found a new doctor in Albany, and her Crohn’s is now in remission. But instead of getting a full-time job, she opted for self-employment. After freelancing as a seamstress making custom drapes didn’t take off, she began making oilcloth makeup bags and eventually opened an Etsy shop called Lucy Blaire Creations.

Blaire also loves creating sewing patterns but found it hard to meet magazine deadlines now that she has two kids. When Etsy added digital downloads, she began selling patterns (this pattern for a stuffed hippo is her top seller) as a way to scale up her business. Etsy processes payment and emails the PDFs to customers, so Blaire doesn’t have to manage that process.

A look inside Blair's crafting studio.

A look inside Blair’s crafting studio.

She credits Etsy with giving her the flexibility she needs to take care of her kids and her health. “Having children or having a chronic disease, it doesn’t make working impossible but it makes working on somebody else’s schedule impossible,” she says. “To be able to run my own shop or take care of a digital download is just so freeing. Maybe today I feel good in the morning, so I can work on my own schedule.”

Katrina Isbill-Floyd, aka Bella McBride from McBride House in New Brunswick, Canada, can relate. Isbill-Floyd was diagnosed with fibromyalgia in her early twenties. She tried working as a botanist but found the travel and work to be overwhelming while also dealing with her chronic pain issues.

“Over the years I have fought this tooth and nail and have struggled to find a proper balance,” she says. “Because of this, working outside my home became more and more difficult so I needed a way to supplement our income and give myself a creative outlet. I’ve always wanted to have my own business and finally decided that time passes no matter what, so why not give it a try?”

Isbill-Floyd opened an Etsy shop selling needle-felted animals in 2009. “It still astounds me that you can take a clump of soft fluffy wool and with the manipulation of a single barbed needle you can create a 3D piece,” she says. “It’s very relaxing if you just let your mind drift and let the wool do the talking.”

Fortunately, muscle pain from her fibromyalgia doesn’t stop her from felting. “In fact, I find that if I don’t do it for a few days, my hands will begin to ache,” she says. “It’s such a soft gentle movement that it really seems to help with the pain.”

Isbill-Floyd also appreciates Etsy’s broad customer base. “In my small community there is no way I would have been able to sell what I was making, let alone have the energy to do so,” she says, “and therefore, would not have been able to have either the confidence or the skill coming from continual practice.” She’s now doing a few select shows a year and credits Etsy with giving her the confidence and practice to do so.

“I’ve never been sicker, but I’ve also never been happier,” Isbill-Floyd says. “My needle felting is what gets me up in the morning and gives me something to look forward to.”

I’ve never been sicker, but I’ve also never been happier.

For Jen Sulligan, who was diagnosed with stage IV Hodgkin’s lymphoma in 2010, making soap and lip balm for her Etsy shop Little Batch Apothecary gave her a much-needed distraction. “I got through treatments [six months of chemotherapy] by looking forward to the days when I felt strong enough to make soap,” Sulligan says.

Katrina Isbill-Floyd crafts through a bout of fibromyalgia.

Katrina Isbill-Floyd crafts through a bout of fibromyalgia.

Sulligan got interested in soap-making through family stories. “I’d heard a story that, back in the day, my great great grandmother would make basic soap from scratch in a big old tub in her back yard,” she says. “I was intrigued. Although her recipe unfortunately did not get passed down through the generations, through lots of reading and experimentation I was able develop my own fantastic formulation of soap.” She no longer makes soap to sell but she does make it for her family. Her shop now features other products including cologne, perfume oil, hand and body cream and candles.

After Sulligan went into remission, she set to work turning her shop into her full-time job rather than returning to her career as a school librarian. “I like the virtual shopping mall aspect of Etsy,” she says. “I get customers coming into my shop that I might not otherwise have come into contact with on my own non-Etsy website.”

Sulligan launched a stand-alone website for Little Batch Apothecary soon after completing treatment and sold her products at craft shows and in a few stores. “I did little to no advertising,” she says. “I still don’t really advertise. The quality of my products and my customer service is what grew my business.”

Turning her craft into a full-time business isn’t easy, but Sulligan enjoys working for herself. “It’s so easy to let our circumstances predict our lives,” she says. “Although a tougher undertaking, it’s a lot more rewarding to take the reins and guide your life where you want it to go.”

Health & Fitness

Cycling Across Canada For Crohn’s

With a backpack full of bear repellant, Michelle Brideau is biking nearly 3,000 miles while dealing with a chronic condition.

Michelle Brideau begins every morning the same way. A cup of hot coffee brewed in an Aeropress, a backpack filled with clothes, food, and a sleeping mat secured onto her back, and the sounds and sights of the Canadian wilderness in her view. As she cycles across Canada, Michelle’s partner, Nathan, is her sole companion, minus the stray campers and cyclists they meet along their way.

Michelle, a native Canadian, mapped out a journey to cycle from Vancouver to Halifax over the course of 70 days this summer. When she and her partner began their cycling journey, Michelle left London, her home of the last decade, behind her. On average, Michelle cycles more than 60 miles per day, with her journey between Canada’s coasts clocking in at 4,200 miles total. But for Michelle, cycling across Canada is about more than the numbers. As she puts it, cycling isquite literallyher medicine.

Michelle is one of the 1.4 million people who live with an inflammatory bowel disease. Specifically, Michelle lives with Crohn’s, a lifelong condition that has no cure, only treatments. Crohn’s is an inflammatory disease that attacks the lining of one’s digestive systems. For people who battle Crohn’s, “trigger” foods can vary by the day — and even by the hour. With the support of her doctor, Michelle does what any “normal” person would do, in spite of a disease that can be, at its worst, debilitating.

michelle_crohns_mountains

Michelle Brideau against a picturesque mountain backdrop.

As a woman living with Crohn’s, Michelle knows to never take a healthy day for granted. Cycling serves as more than just a means to an end for Michelle to appreciate her body and push herself, however; as she explains, cycling literally combats her Crohn’s symptoms and keeps flare ups at bay. It’s taken years of trial and error for her Crohn’s symptoms to recognize cycling as her preferred treatment, though.

Physical pain aside, Michelle and fellow Crohn’s sufferers know that one of the most frustrating aspects of life with Crohn’s is the degree of misinformation people have about the illness. A major misconception about Crohn’s, Michelle explains, is that there are certain “good” and “bad” foods that will either trigger symptoms or won’t. This misconception sometimes leads people to believe that those who suffer from Crohn’s can simply “eat right” or “be more careful” and alleviate their symptoms. As patients with irritable bowel diseases know, however, this could not be further from the truth.

For Michelle, the dietary restrictions are far from clear cut. “There are some days I can eat,” she says, “and some days I can’t.” Facing this side effect of her Crohn’s, Michelle explains, helped prepare her for the seemingly insatiable hunger and fatigue that come with long-distance cycling.

“There are some days I can eat,” she says, “and some days I can’t.”

Like other autoimmune disorders, Crohn’s can develop at any point in a person’s life. Many people who suffer from Crohn’s are diagnosed under the age of 30, and Michelle, who was diagnosed at age 25, is no exception. With a diagnosis, Michelle finally had an explanation for her painful symptoms, but no easy answers on how to live the “right way” with Crohn’s. It would be over a decade, in fact, until Michelle would find her preferred treatment: cycling.

Years after her diagnosis, when Michelle was 36, doctors removed eight centimeters of her small intestine at the ileum, including her appendix, and Michelle realized she’d been taking her health for granted. Her career as a web developer in London didn’t leave her a lot of time to exercise, so after recovering from her surgery, she decided to use what time she did have wisely. “Commuting the eight miles to work by bike seemed the best way to fit exercise into my daily routine,” she explains.

From there, the cycling bug bit Michelle in no small way. At the age of 39, with no background as a professional or competitive cyclist, Michelle purchased her first road bike. Alongside Nathan, who at that point had two years of cycling experience under his belt, Michelle cycled the 60 miles from Oxford to London. This trip, Michelle explains, is what tipped off her passion for long-distance riding.

Michelle is cycling across Canada for Crohn's disease.

Michelle is cycling across Canada for Crohn’s disease.

Seven short months later and Michelle found herself planning her greatest undertaking yet: Cycling from coast to coast of her home country, Canada. Planning a cross-country venture is rarely a simple task, but for Michelle, the challenges were ten-fold. Initially, Michelle considered completing the LEJOG, a common route cyclists use to journey through the United Kingdom. Eventually, she decided to journey where her heart told her to go: home. “I wanted to end in Halifax,” she explains. For Michelle, a Halifax native, completing her journey in her hometown means finishing with the direct support of her friends, family, and community.

Michelle and Nathan are self-supported cyclists, meaning they travel with only what is on their backs. That’s right: There are no companions traveling via car alongside them, or packages of extra clothes or supplies mailed ahead to the towns they’re arriving in. Traveling under such conditions would be exhausting for most anyone, but Michelle promises that her Crohn’s doesn’t make it any harder. In fact, she says, it motivates her.

“The mental aspect of cycling is as important as the physical,” Michelle explains. “If you put your mind to something, it’s amazing what you can do.” For Michelle, traditional medicines used to treat Crohn’s have little positive impact on her body. For this trip, Michelle packed some Bromelain, an anti-inflammatory drug commonly used to combat Crohn’s flare ups. Michelle used Bromelain off-and-on for about ten years, but says she has largely replaced her use of the drug with cycling, and hasn’t used it yet this trip.

While Crohn’s impacts each patient differently, Michelle feels that as her Crohn’s has become more aggressive, the Bromelain is less and less successful in easing her symptoms. Given that Michelle has to take “twice as much” of the Bromelain to counteract her inflammation, she says she is happy to replace the medicine with cycling instead. “If I don’t cycle for more than five days, I start to get symptoms,” Michelle explains.

Like many people with Crohn’s, Michelle’s experiences with the chronic disease have varied over the years. Her symptoms manifest differently as she ages, and her medical care and treatments vary, too. Sadly, when Michelle first sought medical attention for Crohn’s-related symptoms at the age of twenty, her experience was crushing and, temporarily, silencing.

Michelle and her riding partner, Nathan.

Michelle and her riding partner, Nathan.

Michelle remembers her then-specialist, a doctor she had never met before, conducting an anal exam that left her embarrassed enough to never return to his office. She explains that these exams give her little pause now because she is so used to them, but that at “such a young age, with a doctor I’d never met before I was horrified.”

Like many people who suffer from invisible illnesses, Michelle left his office feeling that she wasn’t quite “sick enough” to necessitate seeking help again. With this mindset, Michelle waited until her symptoms worsened dramatically. “I just lived with my sensitive stomach for a few more years,” she admits, “until it got so bad it affected the quality of my life.”

Today, not much embarrasses Michelle. Now, she is happy to see a doctor she is much more comfortable with, a desirable dynamic for any patient, but especially one who has an incurable, life-long illness. Not only is Michelle comfortable with her current doctor, but they actually share a common love. Her doctor, Michelle notes, is also an avid cyclist, and is very supportive of Michelle’s love of biking.

While planning this trip, Michelle admits that she had a lot of fears. Physically, she anticipated body pains from the long hours spent on the bike, and mentally, she expected the strong headwinds to get her down. Two months of camping for a self-proclaimed city girl also brought about anxieties concerning the cold and wet climate typical to Canada’s forests. Still, Michelle swears that each day spent cycling feels like a gift, and even when she is cold and wet and tired, she is grateful for what her body continues to do.

Michelle’s backpack is always stocked with bear repellentjust in case.

One can’t camp in the Canadian wilderness without worrying at least a bit about bears, of course. That’s why Michelle’s backpack is always stocked with bear repellentjust in case. Luckily, Michelle and Nathan haven’t come into contact with any bears. They have, however, come into contact with wonderful support systems along the way.

“Other cyclists are really supportive of what we’re doing,” says Michelle. “I think most people are envious of being able to cycle every day.” While Michelle is no longer ashamed of having Crohn’s, she admits to having trepidations about identifying as someone who has a chronic illness. “Until I decided to do this ride for charity I’d been very private about having Crohn’s,” she explains. “I didn’t want to be discriminated against.”

Dousing her bike with ceremonial Pacific Ocean water.

Dousing her bike with ceremonial Pacific Ocean water.

Thankfully for Michelle, her job has been supportive and granted her three months of leave for her journey. Beyond gaining support from her colleagues, family, and friends, Michelle has also received support and encouragement from strangers. “Having been open about having it has lead me to become shocked how many people have this,” she explains. “It seems everyone knows someone.” In fact, Michelle even met a fellow cyclist who rides with Crohn’s, though she was traveling in the opposite direction.

Michelle and Nathan are raising money for Crohn’s research as they bike across Canada. But for Michelle, cycling for Crohn’s is about more than just the numbers, whether they exist as dollars raised or miles covered. For Michelle, cycling functions as medicine, for both her mind and her body. Long-distance cycling is anything but easy, but for Michelle, it’s the perfect treatment for her incurable disease. And what better place to go to heal yourself than home?