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A request from your chronically ill friend: what I need when we talk about my sickness.

When I meet new people, I often struggle to explain what I need. This is it.

When I was 14, I woke up with a fat face.

I was sick with a fever higher than I had ever felt. My face felt like a sumo wrestler had crammed a cantaloupe into my ear.

My mom took me to the emergency room in the closest town to our family’s remote lake house in North Carolina. Receptionists shooed me in, nurses injected butt shots, and doctors gave me doe-eyed stares. They had no idea what was wrong with me.

Photo via iStock.

This routine of waking up suddenly sick, with a fat face and a spiked fever, continued for years.

Finally, when I was 16, doctors handed me a diagnosis and a pill regimen and told me I might be sick forever.

I was young enough that my pediatric doctor called to give my mom the diagnosis over the phone. The most dramatic part happened before the diagnosis, though, when they told my mom that they had somehow lost my eight vials of blood (which had taken hours of sweat and tears and people holding me down to get). Otherwise, the phone call was short and I could hear the words through the phone my mom held up to her ear.

“I’m so sorry,” the pediatric doctor said to my mom. As if we knew anything about an autoimmune disorder called Sjögren’s syndrome, with hallmark symptoms of dry eyes and a dry mouth, and why we should possibly join the doctor in feeling sad.

Now, more than 10 years later, I’m living fairly well with this autoimmune disorder.

But still, when I meet new people, I struggle with how to explain what I need. Part of my introduction to new people has to include these words: “I’m sick.” And that’s not easy.

So hello, new friend. Here’s what I need you to try to understand when we talk about my life with a chronic illness:

1. I need you to let me have my green couch moments.

After that first day at the hospital in North Carolina, they sent me home without answers and I slept on the green couch at my family’s lake house for days. I remember feeling sad, watching my cousins jump off the diving board at the end of the dock.

Photo via iStock.

But I mostly remember feeling sad about how my family looked at me. They all had the saddest eyes, like they knew something about my future that I couldn’t comprehend at the age of 14.

For some reason, I’ve continued to have a lot of different green couches over the years in various houses and apartments. Sometimes when my sickness takes over, I have to spend days — or weeks — recovering on my green couch. I need you to let me stay there to rest and wait for Netflix to ask me, “Are you still watching 'Friends'?”

2. I need you to show up.

No one knows what tomorrow holds. But if my tomorrow puts me in the hospital, I need you to come. I need you to show up. Sure, you can bring me flowers, but I really just need you to be there at my bedside, hanging out.

In high school, when my hospital visits lasted for 12 or 14 days of sucking on lemons in the pediatric wing to trigger my salivary glands and going for walks wheeling my IV bag, I remember the friends who showed up. And I remember the friends who only came after my parents bribed them to sit with me for a couple hours so they could go home to shower.

People were afraid. I get it. I was afraid, too.

3. I need you to stop asking why doctors can’t fix me.

The autoimmune disorder that I have is chronic, meaning there isn’t a cure, just like many other people in the world with chronic illnesses. I know it’s confusing — you come down with a cough and you go to the doctor to get better.

For me, it’s not that simple. I take a couple of medications that help tackle my individual symptoms and improve my quality of life with pain management, but that’s it. That’s all doctors can do at this point.

Please stop asking why. Doctors don’t know. I don’t know.

4. I need you to try to see my invisible pain.

All those years when I woke up with a fat face were just my invisible illness trying to make a guest appearance for one episode. Mostly, my body suffers in ways that you can’t see.

Photo via iStock.

The more visible symptoms happen in cold weather when the blood rushes away from my hands and feet. This is when you watch in amazement because my white hands look like a dead person’s. I need you to know that the invisible pain hurts just as bad as the visible pain.

5. I need you to stop asking me how I feel today.

Some days, it’s a big deal to just get out of bed because my joints ache and after even 10 hours of sleep, I still feel like I have a hangover. My right foot and my back feel broken, and my dry eyes build a white film on my contacts that feels like I’m watching the world through a dirty fish bowl.

When you ask me how I feel today, the answer is complicated. The list of pain that’s both inflamed or subsided is longer than we need to hash out. And sometimes the answer to your questions makes me sad, grieving the loss of a dream of a pain-free life I think I deserve.

6. I need you to let me weep in my mom’s arms, even as a grown adult.

Next month, I turn 27. Recently, I wept in my mom’s arms in a shaking way that startled even me. It was the day I got another doctor’s bill for hundreds that I couldn’t afford, and I wasn’t sure if I could even go to my specialist appointment because it might mean I couldn’t pay rent or buy groceries for a couple of months.

My health insurance doesn’t get it. They cover so little, deeming appointments and blood work as “medically unnecessary.” But truthfully, nothing about this sick life is easy to handle, even as a pretty independent adult. I need you to let me weep from the deepest places and not tell me to just shake it off.

7. I need you to stop telling me I can’t.

I told my parents I wanted to go on a mission trip to Africa. Instantly, they said, “You can’t.”

I’ve heard these words before, about studying abroad or becoming an elementary school teacher, with planes and buildings and countries with germs lurking behind every corner. Their advice comes from places of love. But I can’t have you joining in on this whole “You can’t” chant.

Until a doctor gives a definite “No, you can’t do that or go there,” then I need you to invite me to go places. I need you to challenge me and dream with me.

8. I need you to let me be stubborn.

I have a cousin who’s searching for a diagnosis for something autoimmune right now. My biggest prayer for her is that she stays stubborn, even after she knows she’s sick. She studied abroad before she got sick, before anyone tried to tell her she can’t.

The last couple of years, I moved to a new time zone, even when some told me I couldn’t. You might get to know me now and want to protect me in a plastic bubble everywhere we go. Please don’t. If you’re planning a trip somewhere exotic, invite me. I’ll tell you if it’s too much.

Photo via iStock.

Let me wrestle in the dark with my own stubbornness, just like when I was a little girl and insisted on riding my new bike with shiny tassels on the very first night, even though it was too big and pitch dark outside. I might fall down and get hurt, but I promise you I’ll learn from stubbornly ditching the training wheels in the dark.

9. I need you to tell me to stop staring at that hospital waiting in the sky.

I live in Dallas with a clear view to Baylor hospital in the skyline. Sometimes, while I’ve sat by the pool at my apartment, I’ve caught myself staring for too long at the hospital waiting in the sky for my future arrival.

You might be familiar with how we tell the “sick narrative”: sick, sicker, dying, gone. I have a higher risk of lymphoma and other complications, but this doesn’t mean that’s definitely how my story will end.

So if you catch me anxiously staring at my scripted future, stop me. I need you to remind me that the story can twist in so many directions, especially with technology and modern medicine that completely shatter traditional death sentences.

10. I need you to let me change the world today. Now.

The best (and worst) part about being sick: It moves me into action. I don’t have time to wait. I probably quit jobs sooner than you would or chase after dreams in frantic ways while you put yours on the back burner. I also don’t have time to waste.

It’s scary and exciting all wrapped into one. I need you to help me figure out how little me plays a part in this big story. Let me fight for things that matter today because tomorrow is just a gift.

11. I need you to love me like the 80-year-old grandma I am.

I’ve finally found a pill box that fits all the vitamins and medications that I need to sort out for designated times each day. My dream night is one cozied up and warm on the couch, followed by a 9:30 bedtime. Sjögren’s means I don’t produce enough tears, but if I did, I would cry while laughing at how many times I have to go to the bathroom because of all the water I have to drink to stay hydrated.

Yes, me and your 80-year-old grandma probably have more in common than you and I do. I’ve completely accepted this fact. Especially since I’ve been 80 since I was 16.

So love me like a grandma! Stop inviting me out to all-nighters and saying it’s so funny how I go to bed early and love warm socks. It’s not funny or cute. It’s who I am.

My autoimmune disorder is in no way categorized as “the worst.”

Believe me, people suffer every day with far worse, much more incurable diseases than mine. Some days, my illness feels mostly annoying, like an accessory I carry around and must remember to bring with me when I leave the house.

But I hope you will one day meet one of my best friends, a woman who has learned to love me and my sickness. She remembers little details, like how I lack the saliva required to eat dry pretzels filled with dry peanut butter. She figures out how to eat each pretzel with a huge swig of water so I won’t choke, and she does it with me, too. Together, we laugh.

She sits with me on the green couch for Netflix marathons when I’m sick. And together, we cry.

That’s what I want, what I need, and what I want you to know about me, friend: W​e all have our stuff, and this is mine.

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'Wicked' author says one line in 'The Wizard of Oz' inspired Elphaba and Glinda's backstory

Gregory Maguire says he "fell down to the ground" laughing when the idea hit him.

Public domain

The two witches in "The Wizard of Oz" clearly had a history together.

Have you ever watched a movie or read a book or listened to a piece of music and wondered, "How did they come up with that idea?" The creative process is so enigmatic even artists themselves don't always know where their ideas come from, so It's a treat when we get to hear the genesis of a brilliant idea straight from the horse's mouth. If you've watched "Wicked" and wondered where the idea for the friendship between Elphaba (the Wicked Witch) and Glinda (the Good Witch) came from, the author of the book has shared the precise moment it came to him.

The hit movie "Wicked" is based on the 20-year-old hit stage musical, which is based on the novel "Wicked: The Life and Times of the Wicked Witch of the West" written by Gregory Maguire. While the musical is a simplified version of the 1995 book, the basic storyline—the origin story of the two witches from "The Wizard of Oz"—lies at the heart of both. In an interview with BBC, Maguire explained how Elphaba and Glinda's friendship popped into his head.

 

Maguire was visiting Beatrix Potter's farm in Cumbria, England, and thinking about "The Wizard of Oz," which he had loved as a child and thought could be an interesting basis for a story about evil.

"I thought 'alright, what do we know about 'The Wizard of Oz' from our memories,'" he said. "We have the house falling on the witch. What do we know about that witch? All we know about that witch is that she has feet. So I began to think about Glinda and the Wicked Witch of the West…

 glinda, elphaba, wicked,  In "Wicked," the two Oz witches met as students at Shiz University.  Giphy GIF by Wicked 

"There is one scene in the 1939 film where Billie Burke [Glinda the Good Witch] comes down looking all pink and fluffy, and Margaret Hamilton [the Wicked Witch of the West] is all crawed and crabbed and she says something like, 'I might have known you'd be behind this, Glinda!' This was my memory, and I thought, now why is she using Glinda's first name? They have known each other. Maybe they've known each other for a long time. Maybe they went to college together. And I fell down onto the ground in the Lake District laughing at the thought that they had gone to college together."

In "Wicked," Glinda and the Wicked Witch, Elphaba, meet as students at Shiz University, a school of wizardry. They get placed as roommates, loathe each other at first, but eventually become best friends. The story grows a lot more complicated from there (and the novel goes darker than the stage play), but it's the character development of the two witches and their relationship with one another that force us to examine our ideas about good and evil.

  - YouTube  youtu.be  

 

Maguire also shared with the Denver Center for Performing Arts what had inspired him to use the "Wizard of Oz" characters in the first place.

"I was living in London in the early 1990’s during the start of the Gulf War. I was interested to see how my own blood temperature chilled at reading a headline in the usually cautious British newspaper, the Times of London: 'Sadaam Hussein: The New Hitler?' I caught myself ready to have a fully formed political opinion about the Gulf War and the necessity of action against Sadaam Hussein on the basis of how that headline made me feel. The use of the word Hitler – what a word! What it evokes! When a few months later several young schoolboys kidnapped and killed a toddler, the British press paid much attention to the nature of the crime. I became interested in the nature of evil, and whether one really could be born bad. I considered briefly writing a novel about Hitler but discarded the notion due to my general discomfort with the reality of those times. But when I realized that nobody had ever written about the second most evil character in our collective American subconscious, the Wicked Witch of the West, I thought I had experienced a small moment of inspiration. Everybody in America knows who the Wicked Witch of the West is, but nobody really knows anything about her. There is more to her than meets the eye."

 wizard of oz, wicked witch of the west The Wicked Witch of the West has a story of her own.  Giphy  

Authors and artists—and their ideas—help hold a mirror up to humanity for us to see and reflect on who we are, and "Wicked" is one of those stories that makes us take a hard look at what we're seeing in that mirror. Thanks, Gregory Maguire, for launching us on a collective journey that not only entertains but has the potential to change how we see one another.

This story originally appeared last year.

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Family

Teen foils hotel-room intruders by using a valuable trick she learned from her cop stepdad

In a stressful situation, she remembered his life-saving advice.

via Josie Bowers / TikTok

Josie Bowers, a 19-year-old woman from Canada, shared the story of how she thwarted an intruder when she was 15. The viral TikTok video is a harrowing tale and a valuable lesson for everyone to learn. Josie was staying with her family at the Ocean City Hilton in Ocean City, Maryland, when the incident occurred.

She went to her hotel room alone to take a shower while her family was on the beach. After getting out of the shower, she was alarmed when she noticed a long wire with a hook at the end wiggling its way out of the crack at the bottom of the front door. The hook was waving around, trying to catch the handle to open the door. It's amazing that no one in the hallway noticed the incredibly suspicious activity.

The intruders eventually caught the handle with the wire and pulled it down to enter the room. Without hesitation, Josie slammed the door shut and put on the deadbolt. "My main thought was holy sh*t, I'm in a towel right now and someone is about to break in and get me," she said on TikTok. "So the door opens a crack, and I just slammed it back shut and put the deadbolt on."

After the door was shut on the intruders, they pretended to work for the hotel. "So they tell me your keycard is broken and we need to get into the room and fix your keypad for you," she continued. "And so I open the door a tad bit, to see if it was a worker. It clearly wasn't, they were in jeans and a T-shirt. Hilton keeps it pretty classy, not the attire."

@josiebowers10

Reply to @emmade1rey #part2

Josie then remembered a trick that her stepfather, who's a police officer, once told her: Never let people know you're alone.

"I yelled 'Hey dad, there's someone here to fix the door.' As soon as they thought that I wasn't alone – and potentially my dad was there – they ran, they were gone," she said. A lot of people freeze in such a stressful situation but Josie was able to remember her stepfather's advice and it made all the difference.

Given their reaction, it's pretty clear that the intruders must have followed her up from the beach or had some inside information to know that she was alone. They didn't want anything to do with her father. "So I think I'm very smart for this one, my stepdad is a police officer, he taught me never to let people know you're alone. I yelled 'Hey dad, there's someone here to fix the door.' As soon as they thought that I wasn't alone, and potentially my dad was there. They ran, they were gone," she said.

@josiebowers10

Reply to @lionacreates #part3 #oceancity

The TikTokker shared the video to show others what they should do in a similar situation and to remind them to never let anyone know they are alone.

"I'm glad I had this experience so I can teach people about it. Obviously, I'm safe but it could have ended up a lot worse," she said. "Be safe, you can get door stoppers, always put on the deadbolt."


This article originally appeared four years ago.

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Dad shares the hilarious conversations he has with 5-year-old daughter and folks are cracking up

"Why do people congratulate you when Mom is making the baby?

via James Breakwell/X

All parents have had similar convos with thier kiddos.

Raising kids is tough, but there's a lot of laughs along the way. Especially when actual conversations start, as kids begin trying to make sense out of the world around them, ask questions, and test mommy and daddy's resolve.

Back in 2018, comedy writer and children's book author James Breakwell, with four daughters who were all under the age of eight at the time, shared their hilarious conversations on X. From these tweets, it looks like comedy runs in the family. Here's a sampling of some Breakwell's funniest kid-inspired tweets.

 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 


 

While Breakwell's 7-year-old wasn't as heavily featured, when she was quoted, the sarcasm was palpable. Which makes sense, considering that kiddos begin understanding this mechanism around that age.

 


 


 


 


 


 


 


 


 


 


 


 


 

Kids really do say the darnedest things, and we love them for it. It one of the many, many ways then bring so much joy to the world. It almost makes up for the headaches and sleepless nights, doesn't it.

This article originally appeared seven years ago.

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Man uses 'garbage' shoes to explain troubling economic trend for middle-class Americans

"These shoes are just the tip of the iceberg."

Photo credit: Canva

Remember things being built to last?

Americans are well aware of shrinkflation, where food companies reduce the sizes of their products while the price remains the same at the grocery store. You see this in fast food restaurants when you pick up a burger and feel like your hand has grown a few inches, and at the supermarket when you buy a box of cookies, it weighs less than it did a few weeks ago. Companies use this strategy when they think you’ll be less likely to notice a dip in quantity than a hike in the price.

We see something similar in the world of retail, particularly fast fashion. Fast fashion offers cheaper garments made from low-quality materials that last about as long as the trend does, so people can throw them away and buy the next hot thing. This can be a real problem because fast fashion harms the environment and leads to exploitative labor practices. And the tough part is—even for the most conscious of consumer, it's hard to escape from.

Here's a prime example of what this looks like in the real world. A few months ago, a TikTokker named Tom (@SideMoneyTom), popular for making videos about consumer products, went viral for a video where he called out shoe manufacturers for dropping their quality while keeping prices high. “So many of you guys want to shoot the messenger, but look, it's not my fault shoes are made out of Styrofoam and oil now,” Tom says in a TikTok with over 528,000 views. “It's literally every shoe you look at now. It's not even just the cheap ones. I can find hundred dollar plus pairs of shoes all day long with glue squeezing out of their Styrofoam cracks.”

 
 @sidemoneytom Replying to @Oscar Magaña shoes are done #fyp #shoes #foryou ♬ original sound - SideMoneyTom 
 
 

Tom notes that recently, shoes have been made with foam soles instead of rubber. Both have pros and cons. Foam is a little more comfortable, but rubber lasts a lot longer. Rubber shoes keep shape and support over time and are much more durable. Conversely, foam shoes compress over time, losing their support and comfort. When companies sell cheaper shoes that wear out more quickly, they make much more money because you must keep replacing them.

In the video, Tom adds that many companies that used to have shoes made with rubber heels, such as Carhartt and Timberland, have switched to foam. This is an interesting choice for brands that pride themselves on selling durable products.

Cora Harrington, a writer and lingerie expert, says that companies aren't entirely to blame. Americans don’t want to pay higher prices. “People don’t exactly want to pay more for all that stuff,” Harrington told Vox. "So what has to happen if everything is more expensive and the customers still want to pay the same price, something has to be cut and that’s often going to be the quality of the garment.”

“There is an entire generation of consumers at this point that doesn’t actually know what high-quality clothing feels like and looks like,” Harrington continues. “It gets easier, I think, for consumers to just not know any better.”

 
 @sidemoneytom Replying to @donkles #shoes #fyp #sketchers #nike ♬ original sound - SideMoneyTom 
 
 

Many commenters have noticed the decline in shoe quality and praised Tom for pointing it out. "I am so happy I’m not the only one who is baffled by shoes being made of styrofoam and then being upcharged for them," one commenter wrote. "When shoes started being named some version of 'Air Light Cloud float,' my thought was it was because they went from quality rubber to cheap foam and less materials,” another commenter added.

Tom believes the decline in shoe quality is an example of a more significant trend affecting American consumers' products: quality is decreasing while prices remain the same. “The quality of everything is going to hell, and the prices are going up," Tom concludes his video. "The problem is, so many of us have just become used to it that we keep buying it, and we basically allow them to dumb down the quality of everything. Everything in our lives. These shoes are just the tip of the iceberg. Start thinking about it in your life. What are you gonna allow to be garbage quality?"

This article originally appeared in March.

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Golden Years

'Boomer panic' is a real phenomenon, and there's a heartbreaking reason for it

This isn't just young generations bashing the old.

Photo credit: Canva

Boomer panic is real.

In a video posted in September 2023, TikToker @myexistentialdread used the phrase “boomer panic” to explain how baby boomers (1946 to 1964) can quickly become unhinged when faced with the most minor problems. It all started when she visited a Lowe’s hardware store and encountered a boomer-aged woman working at the check-out stand.

“I had a dowel that didn’t have a price tag on it, whatever, so I ran back and took a photo of the price tag. And as I was walking back towards her, I was holding up my phone… because I had multiple dowels and that was the one that didn’t have the price tag on it,” she said in the video. “And she looks at me and she goes, ‘I don’t know which one that is,’ and she starts like, panicking.” The TikToker said that the woman was “screechy, panicking for no reason.”

 older woman upset, boomer reactions, boomer panic Older people can become frustrated over seemingly small things.Photo credit: Canva

Many people raised by boomers understood what she meant by "boomer panic." "Boomer panic is such a good phrase for this! Minor inconvenience straight to panic," the most popular commenter wrote. And while there was some unfortunate boomer-bashing in the comments, some younger people tried to explain why the older folks have such a hard time regulating their emotions: “From conversations with my mother, they weren’t allowed to make mistakes and were harshly punished if they did.” The TikToker responded, “A lot of people mentioned this, and it breaks my heart. I think you’re right,” Myexistentialdread responded.

A follow-up video by YourTango Editor Brian Sundholm tried to explain boomer panic in an empathetic way.

 

“Well, it's likely that there actually was a reason the woman started panicking about a seemingly meaningless problem,” Sundholm said. “Most of us nowadays know the importance of recognizing and feeling our emotions.” Sundholm then quoted therapist Mitzi Bachman, who says that when people bottle up their emotions and refuse to express them, it can result in an "unhinged" reaction.

TikToker Gabi Day shared a similar phenomenon she noticed with her boomer mom; she called the behavior “anxiety-at-you.”

Day’s boomer mother was “reactive,” “nervous,” and “anxious” throughout her childhood. Now, she is still on edge with Day’s children. “She's immediately like gasping and just really like exaggerated physical reactions, and then, of course, that kind of startles my kid,” Day said. “Again, I know that this comes from a place of care. It's just a lot,” she continued.

@itsgabiday

It comes from a place of love but it is exhausting 🫠😬 #millennialmomsoftiktok #boomergrandma #reparenting #gentleparenting

 

There is a significant difference in emotional intelligence and regulation between how boomers were raised and how younger generations, such as Gen X, millennials, and Gen Z, were brought up. Boomers grew up when they had to bottle up their feelings to show their resilience. This can lead to growing anger, frustration with situations and people, chronic stress, and anxiety—all conditions that can lead to panicky, unhinged behavior.

Ultimately, Sundholm says that we should sympathize with boomers who have difficulty regulating their emotions and see it as an example of the great strides subsequent generations have made in managing their mental health. “It may seem a little harsh to call something 'boomer panic,' but in the context of how many of them were raised, it makes a lot of sense,” Sundholm says. “It also underlines the importance of emotional regulation skills and teaching them to future generations. And maybe most important, having compassion for those who never had a chance to learn them.”

 older person's hands holding a younger person's hands, compassion for elderly Having compassion for older generations can go a long way.Photo credit: Canva

This article originally appeared in March.

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