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An unthinkable way to lose your mom and why it's important we talk about it now.

Instead of talking about me, my pre-existing conditions, my frustration and fear of what millions of Americans stand to lose because of the American Health Care Act, let’s talk about you.

More specifically, let’s talk about your mother.

You know those stomachaches she’s been getting on and off for the last six months or so? Maybe it hasn’t been six months. Maybe they started over the holidays: She was complaining about it at Thanksgiving while you were standing next to her mashing potatoes, but you weren’t really paying attention. At Christmas, she seemed a little more run down than usual, but, you know, she’s getting old. Aren’t we all, right?! She said something about menopause, and you noped the fuck out of that conversation. You don’t need to hear about how she and your father haven’t had sex in two months because she’s in pain or how sometime around Easter she started losing weight really fast because she’s so nauseated she can’t eat anything.


She did go to her doctor, but he told her it was probably stress.

She might start an antidepressant. She has the prescription, they gave her one, but she hasn’t filled it yet because deep down she doesn’t think she’s depressed. She just feels sick, except it’s kind of vague.She doesn’t really want to tell anyone lest she worry them unnecessarily. It's a mother's trait. It’s probably nothing.

Six months from now, she finds out too late that it’s ovarian cancer.

She should have known — that’s what her aunt had, but of course no one talked about it "back then." Apparently they don’t really talk about it enough now either.

She tells you the news when you breeze into town the night before Thanksgiving  —  too late to really help her with dinner preparations, but she lets you pour yourself a glass of the good wine. You start crying almost immediately, yet she seems eerily calm about it.

See, she had a bunch of other stuff in her medical record  —  high cholesterol, for one. She had ovarian cysts as a younger woman, not that she ever told you. She thought they'd gotten better after she had kids. Maybe they didn’t. Maybe she should have paid more attention.

In any case, she can’t seem to get her insurance company to pay attention.

She doesn’t want to have more tests or even see her doctor because for a while there, the co-pays were getting "a little out of hand," she'd thought.

Then it seemed like her insurance company was just denying everything her doctor wanted her to have. She tries to explain that to them, tries to say it wasn’t that she didn’t want to have the biopsy or the CT scan, she was just worried about the bill. Her doctor tells her she is being "noncompliant," but she would be wiling to comply if she thought she and your father could afford it.

She’s supposed to be on these medications, but they aren’t covered. Her doctor doesn’t seem to understand the disconnect between the pharmacy and the insurance provider. He suggests that she just call the pharmaceutical company directly and ask about getting it through charity care or something.

Your father says they’ll remortgage the house if they have to, but your mother says, "Oh, no, no, no. We’ll figure something out."

They haven’t yet. She knows they need to be thinking about it, but she’s feeling very tired.

She’s going to have to stop working soon  —  she’s been taking too many sick days.

Maybe she could get short-term disability, but this whole situation doesn’t exactly feel short-term. She would ask more questions, but she’s just so tired. She hurts. She’s not sleeping well, and she doesn’t have much of an appetite. When the timer on the oven goes off and she turns to tend to it, you see how thin she’s gotten, but you don’t say anything.

Later that night, when you’re in your childhood bedroom trying to fall asleep, you hear your dad’s weird, honking crying from the hall bathroom.

She dies by Christmas. At her funeral, you realize she was so much more than just your mother.

First, she was a daughter. It turns out your grandmother also dies just after the New Year, and everyone whispers that it was a broken heart that did it.

She was the love of your father’s life. Even though it always made you feel awkward to consider it, now that she’s gone and he’s the broken half that’s left, you understand completely what it means that he loved her longer than you did.

She was the "beloved" older sister, the "cool" cousin, the "fun" aunt.

You find out three different women considered her their best friend, and more people than you’d ever met or known about at least considered her a good friend or a shoulder to cry on.

You realize midway through the service that several generations of her students are there, and the ones that are now in college revert back into runny-nosed first-graders when they see you. She was the "favorite teacher," "the best teacher," "the only teacher who ever." Her colleagues tell you, with their tired, red-rimmed eyes, she had been nominated for Teacher of the Year for the fifth time, that they’re going to put a bench with her name on it in the courtyard, that her picture is hanging in the office.

You leave rather abruptly, excusing yourself as you twist away from the conversation. You look for your dad and find him out back of the funeral home, by where they park the hearses.

"She would rather have died than make us lose the house or dip into the money we set aside for you," he says, and his voice isn't unkind and there's no blame placed on her or you.

"Why the hell was she even thinking about money if she was so sick?" you sputter.

"If she was going to die, she didn’t want to bankrupt us. It was hard enough if she wasn’t able to work, but, you know — medical bills on top of that. It was a lot, kiddo. She was trying to protect us."

"She didn’t want to think that you’d ever be in that position, where you couldn’t afford to be sick. Where a funeral was cheaper than another round of treatment, or a hospital stay," he continues.

"She didn’t want be a burden on you or me or anyone. She didn’t want to be the reason we lost the house or used up the money we had set aside for you. She didn’t want to have to go on the Facebook and ask people to donate money to us."

"People would have. If they’d known," you begin to say.

"She didn’t want it to be like that," he says simply. "She worked hard all her life. She paid her dues. She just thought — I mean I guess we all thought that was enough, you know? To have rights. To have access to health care without losing your shirt."

"She was my mother," you squeak, and you’re crying now, "I loved her. I love her. I would have done anything. I didn’t know  —  she didn’t  —  I didn’t even know ..."

Your father, who has never been all that good at hugs, wraps an arm around your shoulder. He smells like American Spirits and shoe polish and that perpetual new carpet smell of a funeral parlor.

"She loved you more than anything. Like any parent, she just wanted to make sure you’d have a better life than she did," he says, and it’s so quiet, you hardly hear his words. But the weight of them you feel.

This story first appeared on Medium and is reprinted here with permission.

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Three women, three MS journeys: How multiple sclerosis looks different for everyone

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.

Courtesy of Sanofi

Helga, Nathalie and Gina all have MS, and their experiences show how differently the disease can manifest.

True

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.

woman with horse, woman riding horseGina loves riding her horse, Benita.Courtesy of Sanofi

Gina—Hamburg, Germany (diagnosed with relapsing multiple sclerosis in 2017)

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.

woman in wheelchair holding medal, woman rowingNathalie is an award-winning rower with multiple international titles.Courtesy of Sanofi

Nathalie — Pennes Mirabeau, France (diagnosed with relapsing-remitting multiple sclerosis in 2002)

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.”

woman exiting water after swimming, woman with great daneHelga's Great Dane has become a helpful and beloved companion.Courtesy of Sanofi

Helga—Johannesburg, South Africa (diagnosed with relapsing multiple sclerosis in 2010)

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.

MAT-GLB-2301642-v1.0-05/2023

This article was sponsored by Sanofi. Participants were compensated when applicable.

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