The Way Doctors Think About Death Is Pretty Different From The Way Their Patients Do
When it comes to death, I guess they're the experts. Here's what the experts have to say on the topic.
Gina, Nathalie and Helga share their reactions to being diagnosed with MS and how they stay informed and positive in the face of ever-changing symptoms.
It’s been 155 years since neurologist Jean-Martin Charcot gave the first lecture on a mysterious progressive illness he called “multiple sclerosis.” Since then, we’ve learned a lot. We know MS causes the immune system to attack healthy tissue, including damaging the brain and spinal cord. Resulting symptoms can be debilitating and include fatigue, blurred vision, memory problems and weakness. Huge advancements in our understanding of MS and its underlying causes, as well as treatment advances, have been made in the past few decades, but MS remains a complex and unpredictable reality for the 2.8 million+ people diagnosed around the world.
Ironically, the only real constant for people living with MS is change. There’s no set pattern or standard progression of the disease, so each person’s experience is unique. Some people with MS have mild symptoms that worsen slowly but sometimes improve, while others can have severe symptoms that drastically alter their daily lives.
All people with MS share some things in common, however, such as the need to stay informed on the ever-evolving research, find various lines of support and try to remain hopeful as they continue living with the disease.
To better understand what navigating life with MS really looks like, three women shared their MS stories with us. Their journeys demonstrate how MS can look different for different people and interestingly, how the language used to talk about the disease can greatly impact how people understand their realities.
Gina loves riding her horse, Benita.Courtesy of Sanofi
When her youngest son was 4 months old, Gina started having problems with her eye. She’d soon learn she was experiencing optic neuritis—her first symptom of MS.
“Immediately after the diagnosis, I looked up facts on MS because I didn’t know anything about it,” Gina says. “And as soon as I knew what could really happen with this disease, I actually got scared.”
As her family’s primary income provider, she worried about how MS would impact her ability to work as a writer and editor. Her family was afraid she was going to end up in a wheelchair. However, for now, Gina’s MS is managed well enough that she still works full-time and is able to be active.
“When I tell somebody that I have MS, they often don't believe me the first time because I don't fulfill any stereotypes,” she says.
Overwhelmed by negative perspectives on living with MS, Gina sought support in the online MS community, which she found to be much more positive.
“I think it’s important to use as many positive words as you can when talking about MS.” It’s important to be realistic while also conveying hope, she says. “MS is an insidious disease that can cause many bad symptoms…that can be frightening, and you can't gloss over it, either.”
To give back to the online community that helped her so much, Gina started a blog to share her story and help others trying to learn about their diagnosis.
Though she deals with fatigue and cognitive dysfunction sometimes, Gina stays active swimming, biking, riding horses and playing with her sons, who are now 11 and 6.
Cognitive dysfunction is common in MS, with over half of people affected. It can impact memory, attention, planning, and word-finding. As with many aspects of MS, some people experience mild changes, while others face more challenges.
Gina says that while there’s still a lot of education about MS needed, she feels positive about the future of MS because there’s so much research being done.
Nathalie is an award-winning rower with multiple international titles.Courtesy of Sanofi
Nathalie was a teenager and a competitive athlete when she noticed her first symptoms of MS, but it would take four years of “limbo” before she was diagnosed.
“Ultimately, the diagnosis was more of a relief, than a shock,” she says. “Because when you have signs and you don’t know why, it’s worse than knowing, in the end, what you have.”
However, learning more about the disease—and the realities of disease progression—scared her.
“That glimpse of the future was direct and traumatic,” she says. Her neurologist explained that the disease evolves differently for everyone, and her situation might end up being serious or very mild. So, she decided to stop comparing herself to others with MS.
She said to herself, “We’ll see what happens, and you’ll manage it bit by bit.”
By 2005, Nathalie’s MS had progressed to the point of needing a wheelchair. However, that has not dampened her competitive spirit.
Nathalie began her international rowing career in 2009 and has won multiple world titles, including two Paralympic medals—silver in London and bronze in Tokyo. Now, at 42, she still trains 11 times a week. Fatigue can be a problem, and sometimes hard workouts leave her with muscle stiffness and shaking, but she credits her ongoing sports career for helping her feel in tune with her body’s signals.
“Over the years, I’ve learned to listen to my body, letting my body guide when I need to stop and take breaks,” she says.
Nathalie explains that she used to only look backwards because of the initial shock of her diagnosis. In time, she stopped thinking about what she couldn’t do anymore and focused on her future. She now lives in the following mindset: “Even when doors close, don’t miss out on those that open.” Instead of focusing on what she can’t do, she focuses on the opportunities she still has. Right now, this includes her training for the 2024 Paralympic Games in Paris, where she will compete for another rowing medal.
“I only go forward,” she says. “Well, I try, anyway…It’s easy to say, it’s not always easy to do. But that’s what I try to do.”
Helga's Great Dane has become a helpful and beloved companion.Courtesy of Sanofi
When Helga first started having balance issues and numbness in her feet, she chalked it up to her training as a runner. But when the numbness moved to her face, she knew something was wrong. She never guessed it was MS.
“When I was diagnosed, I felt completely overwhelmed and clueless,” Helga says. “I felt that I had nowhere near enough information. I did not know anything about the disease…I had no idea that it was going to be a process of continually monitoring and adjusting your lifestyle.”
In the beginning, Helga’s symptoms developed slowly, and she didn’t appear ill to others. She was even able to run for a few years after her diagnosis, but she couldn’t do marathons anymore, and she began to fall frequently due to balance issues and right-foot dragging. Then her cognition issues became more problematic, especially in her job as a trainer in a printing company.
“My executive function, decision-making and short-term memory were affected to the point that I was eventually medically unfit for work,” she says. She stopped working in 2017.
However, she didn’t stop living life. Even though she could no longer run, she continued to swim competitively. She got a Great Dane puppy and trained him as a service dog to help her walk. She also serves as vice chair of the patient support organization Multiple Sclerosis South Africa, and she advises others who have been diagnosed to join a patient advocacy group as soon as possible to get reliable information and meet others with MS.
Helga says she is “hopeful” about the future of MS. “I must say that I am so grateful that we have all the new medications available, because my life would not be the same if it wasn't for that,” she adds.
Part of how she manages her MS is by looking at the positives.
“If I could tell the world one thing about MS, it would be that MS is an incurable disease of the nervous system, but it's also the greatest teacher of valuing your health, family, friends, and managing change in your life,” she says. “My life is diversified in a way that I never, ever thought it would, and MS has been honestly the greatest teacher.”
Each MS journey is unique – with each person impacted experiencing different struggles, successes, and feelings as they manage this unpredictable disease. But the common thread is clear – there is a critical need for information, support, and hope. We are proud to participate in World MS Day and share these incredible stories of living life while living with MS. To learn more about MS, go to https://www.sanofi.com/why-words-really-matter-when-it-comes-to-multiple-sclerosis.
This article was sponsored by Sanofi. Participants were compensated when applicable.
"Imagine telling them that their free unlimited minutes only started after 9:00 and on the weekends."
There will likely always be some kind of playful generation war going on between older and younger generations. This time it's a millennial throwing what some may deem as truth bombs at Gen Z, seemingly unprompted. (Well, it could be that he's upset that Gen Z is getting all the credit for being tech savvy since the majority of his complaints were technology related.)
Dwight Thomas uploaded a video to TikTok listing things that millennials grew up with that the generation below him would be outraged by. As someone who would be considered an elder millennial by some people, I'd have to agree. The man makes some valid points about things we experienced as teenagers that would likely make teens today aggressively send out Change.org petitions.
"These new-age kids will never understand the struggle. Imagine telling them that their free unlimited minutes only started after 9:00 and on the weekends," Thomas says into the camera.
He goes on to talk about trying to have a love life during those times. Since phone access was restricted, you had limited time to woo anyone after school, which meant the alternative was attempting to do it during school hours. But that was also a problem because teachers were kind of tattle-tales back then, according to Thomas.
"It's not even like you could talk to your friends at school 'cause they would call your house and tell your mama that you didn't care about your education and you wasn't trying to learn," he complained. "Because all you come to school for is to sit around and talk to your friends."
Honestly, the video is causing flashbacks, especially when he talks about teachers intercepting love notes and reading them in front of the class. Thomas jokes about how millennials were making history with their self-taught coding skills on MySpace while the younger generation has the help of AI. The entire video is full of head-nodding moments if you grew up a millennial, or like me, a Xennial. Watch it below.
We was out here making history! But go off though..
"Nobody is looking at you weird because all the families are there for the same reason."
Going out to see a movie is a classic fun family activity, but for some families, it's an outing that causes far more stress than it's worth. When you have a child who needs to move or make sounds in order to function, sitting quietly through a two-hour movie simply isn't going to happen.
That's why major movie theater chains have started having dedicated "sensory showings" of feature films for families with autistic members or others who have sound and movement needs that don't mesh well with traditional moviegoing etiquette.
Camille Joy of the Moments of Joy Podcast shared a video her son, Maison, enjoying a sensory showing of Disney's "The Little Mermaid." Maison can be seen walking up and down the aisle stairs during the film in the post, with Joy sharing how the experience went.
"In my stories the other day I was expressing my desire to bring Maison the movies but I knew he wouldn’t do well in a typical theater setting," the mother of five wrote on Instagram. "A few of you told me about sensory movie days so I googled this in my area. There were so many theaters that do this."
"Sensory movies are for children like ours," she explained. "They are advertised as safe space where guests are free to express themselves by singing, crying, dancing, walking around, talking or shouting while enjoying Hollywood’s latest films!"
"Maison got to be himself," Joy continued. "Singing, loudly humming, walking throughout the theater and he wasn’t the only one, that was my favorite part! Nobody is looking at you weird because all the families are there for the same reason. I had minimal anxiety in this atmosphere and Maison was singing his little heart out."
#fyp #fypシ #asd #autism #autismawareness #adhd #autismacceptance #specialneeds #autistic #autismmom #autismfamily #aspergers #autismspectrumdisorder #autismspectrum #autismsupport
Other parents chimed in with their own experiences with their kids with unique sensory needs. While some still find movies a challenge because their kids are sensitive to sounds in general, others loved having the dedicated showings where their kids could feel free to be themselves without worrying about disturbing others.
"Yes!!!! Regal Movie theaters in NYC do early viewing," shared one parent. "I was able to tell my Tyler to see his Mario Movie, which was such a relief. Only time he's ever sat through one. He did get up and became restless but stayed focused. There are fewer people and it is such a relief. I'm glad our Maison was able to enjoy the movie."
"I love this our son did great," shred another. "We're definitely doing this again."
But the majority of comments were from people who had no idea this was even a thing and were so relieved to hear about it.
Taking your child to the movies is something many parents look forward to, and the fact that parents of kids with sensory needs now have a way to do that without worry is huge. And it appears all of the major movie theater franchises have some version of this offering for families.
According to AMC Theatres, the lights are turned up and the sound is turned down at their Sensory Friendly Films "so you can feel free to be you at these unique showings for people living with autism or other special needs."
Regal Cinemas calls them "My Way Matinees," which also have the lights up and the sound lowered and where "guests are free to express themselves by singing, crying, dancing, walking around, talking or shouting."
Harkins' Sensory Friendly Screenings "include brightened light levels, reduced sound volume and room for guest interaction." They also allow outside snacks to be brought in.
Studio Movie Grill's website says, "Special Needs Screenings are shown with the lights up and the volume lowered and children are free to move around, talk, or even dance in the aisles during the movie. The sensory friendly screenings are free for children with special needs and their siblings." (Adults still pay a "before-noon price.")
Each theater chain has its own schedule for these special showings, so check with your local movie theaters to see when they offer them. Joy recommends Googling "sensory movies near me," but if you aren't in a major market you may have to call your local theater to find out if they offer sensory-friendly film showings.
Sometimes inclusivity involves welcoming everyone into the same space and sometimes it means creating special spaces for people whose needs differ from others. Three cheers for movie theaters recognizing this need and providing a way for everyone to experience the joy of watching movies on the big screen.
And the Oscar goes to…
Animals can be far cleverer than we give them credit for, especially creatures we don't think of as having distinct personalities. Most of us expect cats and dogs to do show us their unique quirks, but what about a flying squirrel?
A video is making its way around the internet that has people giggling over the dramatic antics of a large pet flying squirrel. It includes no narration explaining what's happening and no context—it just shows a flying squirrel repeatedly faking its own death by broom.
That's right. Death by broom. And from the way it looks, the little bugger came up with the idea on its own and made multiple attempts to create a convincing crime scene.
This is one you just have to see.
Twitter user @Birrellebee wrote that the squirrel "faked his own death, and created a whole crime scene…for attention. I think I'm in love."
Whether the squirrel really did this just for attention or for some other reason isn't clear, but no one seems to offering a more plausible explanation for it.
\u201cThis flying squirrel faked his own death, and created a whole crime scene\u2026for attention. I think I\u2019m in love. \u201d— Sarah Bee\ud83d\udc1d (@Sarah Bee\ud83d\udc1d) 1685808791
While some people have expressed understandable concern over flying squirrels living indoors as pets, we don't know what the living situation here really is. Maybe the squirrel was injured and rescued. Maybe it can't survive in the wild. We simply don't know.
What we do know is that this adorable rodent deserves an Oscar for its performance. The way it gracefully somersaults right into position. The placing of the broomstick on its neck and splaying itself out flat on its back. The checking to see if anyone is looking. The repositioning of the murder weapon multiple times to figure out which one seems more believable.
Was that really what it was doing? Who knows. But it was a genuinely incredible performance nonetheless.
And of course, the people of the internet didn't disappoint in the comments.
\u201c@pimlius @nycsouthpaw Well, maybe he should\u2019ve thought of that, befor being such a wee drama queen. Nobody likes an attention whore.\u201d— Sarah Bee\ud83d\udc1d (@Sarah Bee\ud83d\udc1d) 1685808791
\u201c@RIDICULO_pathy @BirrelleBee I love this squirrel \ud83d\ude02\ud83e\udd70\u201d— Sarah Bee\ud83d\udc1d (@Sarah Bee\ud83d\udc1d) 1685808791
\u201c@GreigBeck @BirrelleBee @MAllanScott It\u2019s an insurance scam.\u201d— Sarah Bee\ud83d\udc1d (@Sarah Bee\ud83d\udc1d) 1685808791
\u201c@Marx_Bros_Thing @BirrelleBee Same\u201d— Sarah Bee\ud83d\udc1d (@Sarah Bee\ud83d\udc1d) 1685808791
Do new friends get cake?
A mother on TikTok is livid after a perceived slight at a birthday party, and it kicked off a passionate discussion about proper parental etiquette. It all started when popular TikTok creator Kat Stickler, 28, took her 3-year-old daughter Mary-Katherine (MK) to a neighborhood park in Florida to play. While at the park, the young girl struck up a friendship with some children who were there for a birthday party.
“I’m going to mom shame. The only people I’ve ever mom-shamed are myself and my own mother. But one other mother is going to be added to the list," Stickler began her video with over 10 million views.
“It was us and this birthday group, right?” Stickler said, adding that her child played with the kids who were there for a party for about 30 minutes. “I thought they were welcoming her with open arms,” she added.
However, things changed after the cake came out.
When the parents at the birthday party began to serve cake, MK lined up with the rest of the kids because they had been playing together. Remember, she’s only 3 years old. So, Stickler approached the people cutting the cake to make sure that it was OK for her daughter to have a piece.
“So I, like, walk over to make sure it’s OK—as a formality. Honestly, I was like, obviously, it’s OK. It’s cake. It’s a massive cake. There’s lots of leftover pieces,” Stickler recalled.
No cake for me thanks, I’m full…of rage👹
But according to Stickler, it wasn’t OK, and after MK was served a piece, the mother of the child having the birthday took it away from her.
“The mother takes the plate away from MK, and gets down to her level, and says, ‘You can not eat this cake, OK? This is not your birthday party. These are not your friends. Where’s your mother?’” Stickler said. She couldn’t believe her eyes when a grown adult took her daughter’s cake out of her hands.
“I was right there,” Stickler told Today.com. “The mama bear in me was like, what just happened?"
Over 54,000 people took to TikTok to give their opinion on the story. Most thought the mother who took the cake was way out of line.
"I would be livid!!" Chelsea Campbell wrote. "I shared cake and cupcakes with all of the kids at the park for my daughter's first birthday. They became her and my other daughters' friends and I had plenty…the nerve she had to bend down and say that."
"Public park means you better be prepared for extra! Like how dare she even speak to her like that," Patience Swinford agreed.
"The cake didn’t get me… 'these are not your friends' is such a catty messed up thing to say to anyone, let alone a child," Hovago08 added.
But some people thought it was wrong for Stickler to allow her daughter to hang around during the cake-cutting.
"That is so sad BUT that wasn’t a party she was invited to so I would’ve grabbed my kid as soon as happy birthday started. It is a bit entitled," Josephine Mary wrote.
"Although it is VERY RUDE, it is the mom's right to tell MK no to cake bc she technically wasn’t invited," Abby wrote.
Some sat on the fence.
"I’m the mom that would call my kid away once they went over for cake, but I’m also the mom that’d offer cake to the 'extra' kid,'" Tessa Lewis wrote.
Brian Fike had a very practical response to the situation. “I'm inviting every kid in the park over because I'm not trying to bring all that cake home,” he said.
In the end, MK got over it because, after the party mishap, her mother took her to get some ice cream.
“She was totally fine,” Stickler said. “She was excited to go get ice cream with me!”
Barrymore called out news outlets that twisted her words to make it sound like she wished her mom was dead.
Even with a literal ray of sunshine like Drew Barrymore, lightning has to strike once in a while. Especially when it comes to words being twisted by the media.
In a recent interview with “New York Magazine,” Barrymore offered some heartfelt honesty regarding the complicated relationship with her mother and former manager, Jaid Barrymore, as she has done several times before.
After the interview came out, certain news outlets extrapolated a statement by Barrymore to create salacious headlines, presumably for clicks, that claimed the “50 First Dates” star “admitted” that she “wished her mom was dead.”
Barrymore, who has already had more than her fair share of exploitation by the media, was simply not having it.
In a heated Instagram post, Barrymore held no punches as she was quick to remind the tabloids that the tumultuous details of her childhood have been a source of news fodder. Then she proceeded to tear them a new one.
“To all you tabloids out there, you have been fucking with my life since I was 13 years old. I have never said that I wish my mother was dead. How dare you put those words in my mouth!”
What Barrymore actually said was that she didn’t have the “luxury” that many other previous child actors who went through similar tumultuous childhoods had—of being able to cleanly process that trauma after a parent had passed. Instead, she has to process while maintaining a relationship with her mother, who is still alive.Her words were: “All their moms are gone, and my mom’s not. And I’m like, 'Well, I don’t have that luxury.' But I cannot wait. I don’t want to live in a state where I wish someone to be gone sooner than they’re meant to be so I can grow. I actually want her to be happy and thrive and be healthy. But I have to fucking grow in spite of her being on this planet.”
Knowing this, her anger certainly seems justified. It’s clear that Barrymore in no way meant that she was “excited” to see her mother die.
“I have been vulnerable and tried to figure out a very difficult, painful relationship while admitting it is difficult to do while a parent is alive,” she said in the Instagram video. “Don’t twist my words around or ever say that I wish my mother was dead. I have never said that. I never would.”
It’s no secret that humans are quicker to pay attention to stimuli that is negative, and news sources vying for said attention often use that to their advantage with eye-catching, emotion-inducing headlines. And look, no one knows the importance of compelling headlines like the writers at Upworthy—without them, readers will simply keep scrolling, and valuable stories won’t get read.
However, intriguing a potential reader to engage with a story we find worth sharing and falsifying information for the sake of clicks are two completely different things. And in this case, it not only feeds off of someone’s trauma, it can damage their character in the process.
Luckily, Barrymore handled the situation like a champ and was quick to get support after sending her video—both from fans and fellow celebs alike.
Jennifer Garner, a long-time friend of Barrymore, wrote, “You’re brave and real and I adore you xxx”
“Yes, let them have it!” Jennifer Hewitt chimed in.
Model and host Padma Laksmi also wrote, “Ugh. So sorry. We all knew what you meant. Thank you for your vulnerability always ❤️”
It’s great that Barrymore had the fortitude to respond the way she did. But in all reality, she shouldn’t have to respond to something like this in the first place.
"I'm still good at my job. I'm still a professional. I'm also a mom of four kids and this is reality in America."
Childcare in America has been an issue since well before most of us were born, and it continues to be a struggle for parents. Daycare costs are rough—at one point in time, I paid $276 a week for one child to attend a daycare center, and that's not even the highest price I was quoted. But not everyone can afford the cost of childcare, and when you have multiple children who all need adult supervision, the cost can become astronomical.
The cost of childcare can cause some parents to make the decision to stay home while the other works if the family can survive on one income. In other instances, parents may be working from home while also juggling full-time parenting responsibilities. For parents in the latter category, one mom's new email signature is serving as a reminder that childcare is expensive and school is out for the summer.
Some folks who saw my email signature commented on it, so I wanted to share. The US is the only developed nation w/o subsidized childcare. Adding it would increase our GDP over 1 trillion dollars. Not a handout — it’s a smart decision when facing a recession and labor shortages. pic.twitter.com/iZGLMg1PJW— Meg St-Esprit (@MegStEsprit) May 31, 2023
Meg St-Esprit was in the process of looking up babysitters and summer camps and realizing how unaffordable it was to try to accommodate four children when a "snippy" email came through, according to Today.com.
"In the moment, I was like: 'This is how it's going to be — people are going to need to know that this is how it's going to be for the next couple months,'" St-Esprit, told Today.com. "I'm still good at my job. I'm still a professional. I'm also a mom of four kids and this is reality in America."
St-Esprit is a freelance journalist based out of Pittsburgh, Pennsylvania, so while her job may allow her to have some flexibility, people still expect prompt replies to correspondence. This mom decided that instead of adding additional stress to her plate, she would be brutally honest in her email signature. Honestly, the signature is pretty darn accurate. There are plenty of families in similar situations that probably wish they could change their email signature to something similar.
The signature reads, "Please note I may be slower to respond to email in the months of June, July and August due to the United States' inability to provide affordable childcare for working mothers."
St-Esprit shared a photo of her email signature to Twitter where she received a lot of support from other parents. She wrote about the benefits of universal subsidized childcare for the United States, saying, "The US is the only developed nation w/o subsidized childcare. Adding it would increase our GDP over 1 trillion dollars. Not a handout — it’s a smart decision when facing a recession and labor shortages."
While states do offer childcare assistance for lower-income families, the threshold can unintentionally cause parents to make difficult decisions to keep their childcare subsidy. I recall a phone call made by a parent who attended my child's daycare. The mom was explaining to her partner that she was given a promotion, but after speaking to the daycare director, if she took the raise, she would lose her subsidy and they would suddenly be responsible for paying nearly $900 a week. My eyes bulged at the thought, and as she collected her twins from my son's classroom, she pondered accepting the position but asking to keep the same pay because the new cost of daycare would essentially be a pay cut.
Today I went to my 4yo’s PreK Counts classroom for yoga with a special grownup. This is the only subsidized childcare my children have been able to access as middle earners and it’s been a GIFT. It also reduces educational costs long term because of the early education benefits. pic.twitter.com/hYUt5h129h— Meg St-Esprit (@MegStEsprit) May 31, 2023
I have no idea what the outcome was in that situation because I was just a bystander, but the conversation stuck with me. It partly stuck out because I could've benefitted from a subsidy and partly because many middle-class families struggle with affording childcare but don't qualify for any sort of program to assist.
In a different tweet, St-Esprit also mentions this in-between experience.
"Today I went to my 4yo’s PreK Counts classroom for yoga with a special grownup. This is the only subsidized childcare my children have been able to access as middle earners and it’s been a GIFT. It also reduces educational costs long term because of the early education benefits," the freelance journalist wrote.
Surprisingly, through St-Esprit's frustrated signature, she found solidarity in the email responses she's received.
"I work with a lot of clients, so I thought maybe I should delete it," St-Esprit told Today.com. "Then people started to reply to it, writing: 'Side note: I love this.' 'Side note: Oh my gosh, this.'"
Obviously, there's something a little wonky with America's way of handling childcare. It's especially noticeable in comparison with other industrialized countries that have found a way to not only offer extended paid parental leave but also provide subsidized childcare for working parents.