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Family

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.

Pop Culture

Parents who grew up in the '70s and '80s remember the experiences that blow their kids' minds

Kids were tougher then for a reason.

via Wikimedia Commons

Island School Class, circa 1970s.

Parents, do you think your child would be able to survive if they were transported back to the '70s or '80s? Could they live at a time before the digital revolution put a huge chunk of our lives online?

These days, everyone has a phone in their pocket, but before then, if you were in public and needed to call someone, you used a pay phone. Can you remember the last time you stuck 50 cents into one and grabbed the grubby handset?

According to the U.S. Federal Communications Commission, roughly 100,000 pay phones remain in the U.S., down from 2 million in 1999.

Do you think a 10-year-old kid would have any idea how to use a payphone in 2022? Would they be able to use a Thomas Guide map to find out how to get somewhere? If they stepped into a time warp and wound up in 1975, could they throw a Led Zeppelin album on the record player at a party?

Another big difference between now and life in the '70s and '80s has been public attitudes toward smoking cigarettes. In 1965, 42.4% of Americans smoked and now, it’s just 12.5%. This sea change in public opinion about smoking means there are fewer places where smoking is deemed acceptable.

But in the early '80s, you could smoke on a bus, on a plane, in a movie theater, in restaurants, in the classroom and even in hospitals. How would a child of today react if their third grade teacher lit up a heater in the middle of math class?

Dan Wuori, senior director of early learning at the Hunt Institute, tweeted that his high school had a smoking area “for the kids.” He then asked his followers to share “something you experienced as a kid that would blow your children’s minds.”


A lot of folks responded with stories of how ubiquitous smoking was when they were in school. While others explained that life was perilous for a kid, whether it was the school playground equipment or questionable car seats.

Here are a few responses that’ll show today’s kids just how crazy life used to be in the '70s and '80s.

First of all, let’s talk about smoking.

Want to call someone? Need to get picked up from baseball practice? You can’t text mom or dad, you’ll have to grab a quarter and use a pay phone.

People had little regard for their kids’ safety or health.

You could buy a soda in school.

Things were a lot different before the internet.

Remember pen pals?

A lot of people bemoan the fact that the children of today aren’t as tough as they were a few decades back. But that’s probably because the parents of today are better attuned to their kids’ needs so they don't have to cheat death to make it through the day.

But just imagine how easy parenting would be if all you had to do was throw your kids a bag of Doritos and a Coke for lunch and you never worried about strapping them into a car seat?


This article originally appeared on 06.08.22

From Your Site Articles
parenting
Family

Quick-thinking mom finds her lost toddler in a Kmart thanks to TikTok hack

Every parent should learn this.

via Jess Martini / Tik Tok

There are few things as frightening to a parent than losing your child in a crowded place like a shopping mall, zoo, or stadium. The moment you realize your child is missing, it's impossible not to consider the terrifying idea they may have been kidnapped.

A woman in New Zealand recently lost her son in a Kmart but was able to locate him because of a potentially life-saving parenting hack she saw on TikTok a few months ago.

The woman was shopping at the retailer when she realized her two-year-old son Nathan was missing. She immediately told a friend to alert the staff to ensure he didn't leave through the store's front exit.


"Another friend searched the area he was last seen," the mom wrote in a Facebook post.

The mother began looking for him by rummaging through clothes racks and running through the aisles.

It was the "scariest 10 minutes of my life" she later wrote.

assets.rebelmouse.io


But then she remembered a parenting hack she saw on TikTok by blogger Jess Martini. "If your child goes missing, screw the stares and start calling out their description," the mother recalled.

"I'm missing a little boy, he's wearing a yellow shirt and has brown hair. He's two years old and his name is Nathan!" she called out to the rest of the store while reminding herself not to "break down" in tears.

"You need people to understand you loud and clear," she said.

The mother's calls immediately deputized everyone who heard them to begin looking for the child. It was like multiplying the search by a factor of 10. "I turned an aisle and heard 'He's here!'" she wrote. "I turned back the way I came and there he was. A man had walked past him after hearing me calling out."

She immediately thanked the man, realizing that if she hadn't called out he may have never known the child was missing. "Nate would have walked past him and he wouldn't have blinked," she said.

In November, parenting blogger Jess Martini posted a video sharing the best way for parents to locate a missing child. It's great advice because the knee-jerk response is usually to just call out their name or silently run around looking.

@jesmartini PSA that I feel can save kids and I’ve used- if your child goes missing in public #momsoftiktok #PSA #nojudgement #fyp #4up #besafe #parentsoftiktok ♬ original sound - Jess martini

"To all parents out there, if your child goes missing, do not search in silence or just call out their name,' Martini says in the video. "Shout out loud and clear. Say they're missing, give a description and repeat, repeat, repeat!"

"Everyone will be on alert, and if someone is trying to take off with your kid, it will decrease the chances of them getting away," she added.


The advice is a great reminder to make a mental note of what your child is wearing when you go out, so if they go missing, you can easily provide a description. It also proof that when a parent needs help, most people are more than willing to lend a hand.


This article originally appeared on 01.27.21

From Your Site Articles
life hacks
Science

A juice company dumped orange peels in a national park. Here's what it looks like now.

12,000 tons of food waste and 21 years later, this forest looks totally different.


In 1997, ecologists Daniel Janzen and Winnie Hallwachs approached an orange juice company in Costa Rica with an off-the-wall idea.

In exchange for donating a portion of unspoiled, forested land to the Área de Conservación Guanacaste — a nature preserve in the country's northwest — the park would allow the company to dump its discarded orange peels and pulp, free of charge, in a heavily grazed, largely deforested area nearby.

One year later, one thousand trucks poured into the national park, offloading over 12,000 metric tons of sticky, mealy, orange compost onto the worn-out plot.


The site was left untouched and largely unexamined for over a decade. A sign was placed to ensure future researchers could locate and study it.

16 years later, Janzen dispatched graduate student Timothy Treuer to look for the site where the food waste was dumped.

Treuer initially set out to locate the large placard that marked the plot — and failed.

The first deposit of orange peels in 1996.

Photo by Dan Janzen.

"It's a huge sign, bright yellow lettering. We should have been able to see it," Treuer says. After wandering around for half an hour with no luck, he consulted Janzen, who gave him more detailed instructions on how to find the plot.

When he returned a week later and confirmed he was in the right place, Treuer was floored. Compared to the adjacent barren former pastureland, the site of the food waste deposit was "like night and day."

The site of the orange peel deposit (L) and adjacent pastureland (R).

Photo by Leland Werden.

"It was just hard to believe that the only difference between the two areas was a bunch of orange peels. They look like completely different ecosystems," he explains.

The area was so thick with vegetation he still could not find the sign.

Treuer and a team of researchers from Princeton University studied the site over the course of the following three years.

The results, published in the journal "Restoration Ecology," highlight just how completely the discarded fruit parts assisted the area's turnaround.

The ecologists measured various qualities of the site against an area of former pastureland immediately across the access road used to dump the orange peels two decades prior. Compared to the adjacent plot, which was dominated by a single species of tree, the site of the orange peel deposit featured two dozen species of vegetation, most thriving.

Lab technician Erik Schilling explores the newly overgrown orange peel plot.

Photo by Tim Treuer.

In addition to greater biodiversity, richer soil, and a better-developed canopy, researchers discovered a tayra (a dog-sized weasel) and a giant fig tree three feet in diameter, on the plot.

"You could have had 20 people climbing in that tree at once and it would have supported the weight no problem," says Jon Choi, co-author of the paper, who conducted much of the soil analysis. "That thing was massive."

Recent evidence suggests that secondary tropical forests — those that grow after the original inhabitants are torn down — are essential to helping slow climate change.

In a 2016 study published in Nature, researchers found that such forests absorb and store atmospheric carbon at roughly 11 times the rate of old-growth forests.

Treuer believes better management of discarded produce — like orange peels — could be key to helping these forests regrow.

In many parts of the world, rates of deforestation are increasing dramatically, sapping local soil of much-needed nutrients and, with them, the ability of ecosystems to restore themselves.

Meanwhile, much of the world is awash in nutrient-rich food waste. In the United States, up to half of all produce in the United States is discarded. Most currently ends up in landfills.

The site after a deposit of orange peels in 1998.

Photo by Dan Janzen.

"We don't want companies to go out there will-nilly just dumping their waste all over the place, but if it's scientifically driven and restorationists are involved in addition to companies, this is something I think has really high potential," Treuer says.

The next step, he believes, is to examine whether other ecosystems — dry forests, cloud forests, tropical savannas — react the same way to similar deposits.

Two years after his initial survey, Treuer returned to once again try to locate the sign marking the site.

Since his first scouting mission in 2013, Treuer had visited the plot more than 15 times. Choi had visited more than 50. Neither had spotted the original sign.

In 2015, when Treuer, with the help of the paper's senior author, David Wilcove, and Princeton Professor Rob Pringle, finally found it under a thicket of vines, the scope of the area's transformation became truly clear.

The sign after clearing away the vines.

Photo by Tim Treuer.

"It's a big honking sign," Choi emphasizes.

19 years of waiting with crossed fingers had buried it, thanks to two scientists, a flash of inspiration, and the rind of an unassuming fruit.


This article originally appeared on 08.23.17

From Your Site Articles
Joy

Lyft driver's hilarious menu of 10 different types of ride options is pure genius

All Uber and Lyft drivers should have a ride options menu.

Eric Alper/Facebook

Cameron the creative Lyft driver offers a variety of ride options to his passengers.

Have you ever ridden in an Uber or a Lyft and had the driver talk a lot when you felt like being quiet? Or not say a word when you tried to make conversation? Or play music you found annoying?

When you hop into a driver's car, it's a crapshoot what kind of ride you're going to have. But at least one Lyft driver is removing the mystery a bit by letting passengers choose.

Facebook user Eric Alper shared a post that showed a photo of a piece of paper stuck on the back of a car's headrest that read:

"Welcome to Cameron's car!!!"


"To ensure the best ride possible for you, I have prepared a menu of the various types of rides I offer. Just choose one (or don't, that's an option too) then sit back, relax and enjoy the ride. :)"

Then it listed the 10 ride options Cameron offers:

1. The Awkward Ride - You ignore this menu completely, then we will sit in silence for the remainder of the ride.

2. The Funny Ride - I tell you jokes or entertaining stories from my life.

3. The Silent Ride -

4. The Creepy Ride - I don't say anything but I keep staring at you in the rearview mirror.

5. The Karaoke Ride - We rock out to hits from the 80s, early 2000s or literally whatever you want.

6. The Bubbles Ride - We blow bubbles the whole time.

7. The Small Talk Ride - We talk about how crazy the weather's been lately and I ask if you caught the game last night.

8. The Therapy Ride - You vent to me about your problems and I listen.

9. The Drunk Ride - You throw up in my car.

10. The Cliche Ride - You ask me how long I've been driving for Lyft."

OK, the Bubbles Ride sounds fun, but also maybe a little dangerous. And the Drunk Ride is the main reason I've never wanted to be a Lyft or Uber driver. I may have unintentionally taken a both a Therapy Ride and a Creepy Ride before.

But seriously, the concept is fabulous. People often want something different in a ride depending on their mood, so the idea of having options to choose from is brilliant. The list also directly addresses the awkwardness that is often present when you're getting a ride from someone, so it makes a natural icebreaker and conversation starter—particularly helpful for folks who struggle with social anxiety.

People in the comments loved it.

"I'm sure this wasn't the intention but this is a great example of disability accommodations that everyone can enjoy," wrote one person. "Being able to choose how much energy I expend is so helpful."

"There should be a feature on both Uber and Lyft indicating what type of ride a rider wants or expects," wrote another. "I usually don't talk, but sometimes the driver keeps persisting and I feel awkward at times."

"It clears the air, takes the awkwardness out of it, and establishes expectations for the ride, on both sides," wrote another. "Great idea."


There are some more options I'd love to see added, though:

The Pep Talk Ride - You need encouragement? I'll give you everything I've got to pump you up.

The Tour Guide Ride - I share interesting details about places we pass and offer advice on cool things to do around the area.

The Life Story Ride - We estimate how long your ride will be, set a timer, and each of us shares our life story for half the ride. (No questions, unless the ride goes longer.)

The Deep Questions Ride - We skip the small talk and get right to the big stuff—meaning of life, existence of God, our place in the universe, etc.

The High School Debate Ride - We pick a controversy, flip a coin to decide who will take which side, and debate regardless of our own personal views.

The Pretend Persona Ride - We each make up totally fake names and personas and converse as them so we can chat without actually getting personal at all.

So many possibilities. What kind of ride would you want to take?


This article originally appeared on 04.21.22

From Your Site Articles
Education

It's not COVID, it’s culture: Teacher who has worked overseas shares the problem with U.S. kids

"The problem is cultural."

via LisaConselatore/TikTok and Hunter Johnson/Unsplash

Teacher Lisa Conselatore isn't holding back.

A recent study by the National Center for Education Statistics found that 87% of public schools say the COVID-19 pandemic has negatively impacted students' socio-emotional development. Respondents have also said there has been a significant increase in student misconduct.

However, a teacher with 24 years of experience in the U.S. and abroad believes we are misplacing blame for this rise in misconduct. In a viral TikTok video with over 480,000 views, Lisa Conselatore claims that the big problem isn’t the pandemic but modern parenting.

“The problem is cultural," Conselatore says. "We have raised children to think that they are absolutely the most important person in any room. They are so special that whatever they want to do, or whatever they think, or whatever they say is the most important thing in that moment.”

@lisaconselatore

#tiredteacher #enough #raisingkids #timetolisten #supportteachers #culturetalk #culturecheck #teachersoftiktok #teachersontiktok #teaching2023belike

“I know your children are special to you. I know that my children are special to me,” she continues. “But none of them are the most special person ever in the room at any time. They're not. Nobody is because we live in a society and we all have to get along and we all have to respect one another and part of respecting one another is recognizing when you have a contribution to make and when you need to sit there and open your ears. … We don't have that down. We've missed it.”

In the video, Conselatore lays some pretty big blame on America’s parents, but she also offers some simple solutions to improve the situation.

“Teach them when to listen, taking a turn to speak. Speak when it's appropriate. When you have something to say and. It's your turn,” she says. “Let's reevaluate our family cultures, our community cultures, and our larger society cultures. Because of this is not working, not working.”


This article originally appeared on 11.7.23

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