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What it was like being a 13-year-old New Yorker on 9/11.

Here is what I remember: most of it. The day itself, I mean. The interruption of class, the announcement by the fumbling English teacher, the crowding at the window, the black cloud already invading the skyline.

I remember the snarky, oblivious comments — my own, especially. The teachers herded everyone to the school rooftop to sort us into homerooms and take count of where everyone was.

I remember the first few parents arriving, to our surprise, followed by the announcement that students would not be released from school until a parent — anybody’s parent — signed them out. And then my own parents arrived in a flurry, scooping up as many of the downtown kids as they could find, sweeping us all out to the street, seeing a man with the radio walkie-talkie on his shoulder as if we were in another decade. I remember my father’s van becoming a caravan for other people’s children, the way we dropped them off one by one to grateful parents, how sad I was to watch them leave.


Photo by Ezra Shaw/Getty Images.

I remember reaching my father’s office on 17th Street and the black-and-white TV they had set up. It was the only black-and-white TV that I had ever seen up close. I remember that nobody knew who would be able to get home that night and that the bridge and tunnel employees gathered around the TV set, forcing smiles for my brother and me.

I remember my mother deciding we should go buy groceries, leaving my brother in the office and taking me back to the street. I remember Gourmet Garage feeling like Disneyland. Not because it was full of adventure, but because the entire store was one giant line wrapped around and around itself. Everyone else had had the same idea: Trucks had already been stopped from entering or leaving Manhattan. Food deliveries would be halted. I remember gathering what we could carry, winding around the aisles, paying, leaving.

It was while we were walking back to the office that the two men appeared. They were standing against a wall, both wearing yellow hard hats and reflective vests over their dirty grey sweatshirts and jeans.

Dark mud caked their hair and their hands, and there was dust in the lines in their faces. They poured water from bottles into their mouths, creating streams of mud down their chins and necks.

I heard myself say, "Ew." It wasn’t from disgust. It was just what I could come up with. Maybe it was to fill the quiet already starting to settle in the mouths of everyone around me. Maybe it was to hear my own voice. Maybe it was to try and make my mother laugh. She did not laugh. She looked startled and then worried. "Sarah," she said, "you know that is blood."

It was not a question. I did not stop walking. I did turn back to look.

Photo by Mario Tama/Getty Images.

When we got back to the office, my brother was perched on my father’s knee, playing a video game on his computer. I sat on the floor next to my father’s leg while my mother tried to hand out food to the employees in the other room.

I closed my eyes and put my face in the folds of his pants. I could see the faces of the two men like Dust Bowl photographs from history class. The water pouring down their necks. The dark stains on their arms, their chests. For the first time all day, I started to cry.

We spent that first night at my grandmother’s house because she lived uptown. My six-foot-four, 200-something-pound basketball coach father paced the tiny living room for two whole days, watching the news, wringing his hands.

Finally he decided he needed to get back to our apartment. We didn’t know whether the windows had been left open, whether everything we owned was now covered in ash. He announced that he would go downtown, get a change of clothes for each of us, get his bike out of the basement, and bike his way back uptown.

It sounds absurd now. It was two days after the attack. Nobody had any information yet. Nobody was allowed to go downtown. We could have borrowed clothes. I couldn’t stop imagining the towers falling over instead of down, envisioning my home and the entire neighborhood crushed. But my father was sick of pacing.

Photo by Mario Tama/Getty Images.

It took him hours to get downtown because he had to talk his way through every police barrier, and when he finally arrived, he understood why they had been trying to keep everyone out.

The air was thick and gritty. The only other humans around were police and soldiers. In an effort to reach potential survivors, responders had used bulldozers to stack damaged cars and shove them some blocks north, trying to clear as much rubble as possible. Ash and soot and trash covered everything. Later, my father described it like a science-fiction terrain. With no electricity, there was no elevator or light in the stairwell. The air smelled of burning debris.

My father was shaking by the time he got upstairs. He found a backpack. He put in a change of clothes for each member of the family, made sure the windows were closed. Then he caught sight of my childhood loves: a stuffed animal lion and a baby blanket. He did not know if he would ever be back in our apartment again. He did not know what the future held. He took out his change of clothes and put in the blanket and stuffed lion instead.

He zipped the backpack up as far as he could and left the lion with its head sticking out, so that when my father got on the bike to make his way up through the dust and ash and ghosts, the lion’s head lay perched on his shoulder. He said the only way he made it back uptown was by whispering into the lion’s ears the way he had seen me do as a child. "We’re going to make it," he said over and over. "You and I. We’re going to be OK."

We were not OK for a long time. But memory is a terrible beast. It refuses to obey or sit still.

There are holes that will not fill themselves. It was years before I remembered that my mother severely tore ligaments in her ankle the next week, that for all those weeks of aftermath she was hobbling on crutches, a stupid metaphor for her broken city. Why would my brain decide to forget that detail? Why would I need protection from that fact? My brother’s growing silence, his twitching eyes. My father’s time-bomb anger that we tiptoed around. My mother’s desperate attempts to prevent everything from sinking. These things come back only in pieces. The loft we stayed in for weeks is hazy at best.

Photo by Alex Fuchs/AFP/Getty Images.

But the moment we finally returned to our apartment I remember in crystalline detail. The three cars crushed one on top of the other in line with our front door, like some giant had stacked his Hot Wheels and gotten bored with them and smashed his hands down on top. What I can see most clearly is the white flowers that someone had slipped into the cracks of the shattered windshields. The delirious idea that this was all just a series of car crashes, one on top of another, the grey ash everywhere.

I remember knowing I was lucky. There was so much hurt I was spared.

Yes, I watched the black cloud from my classroom window. Yes, I inhaled the ash and the smell. Yes, I was out of my home for a month. Yes, my parents’ marriage became strained. Yes, I lost my soccer coach. Yes, my brother stopped speaking for months. Yes.

But my mother still tucked me in at night. My father still came home from work. All of my limbs worked to help raise me from the pillow each morning. Nothing was so disrupted that I could not continue being an eighth-grade girl, concerned about homework and the upcoming school dance.

I understand that scars are not always visible; they are often as quiet as a prolonged blink, a clenched fist. There are moments that are etched into the deepest parts of us that never leave.

My mother no longer trusts blue skies. I know that buried things do not always stay buried, that damage is a slow unraveling. Sometimes it feels like we are just accumulations of hurt smashed one on top of another. I collect as many flowers as I can. I never know when I will need to slip them into shattered glass.

Years later, I am unsurprised when I break into tears at the smell of an electrical fire. I understand what happens inside me when I see the lights come on each September.

Photo by Stan Honda/AFP/Getty Images.

But how can I explain the late-night train ride more than a decade later? The 4 a.m. trek home. I was alone on the subway car, until I wasn’t.

He was there, across the car, his grey sweatshirt sleeve pulled down over his hand, the clutched water bottle. The yellow hard hat. The reflective vest. The Dust Bowl eyes. The stains.

If God himself had outstretched a hand to me, I would have been less fazed. I did not breathe. I did not look away. My entire body quaked. He looked at me unblinking. I expected — and there is no way to say this except to say it — I expected that he was there to tell me my time had come. I truly believed this. It made perfect sense. He was my last memory of being a child. Now his presence would mark my last memory of being alive.

I do not know how long we rode together. Not another soul got on or off. The train stopped; the doors opened. He stared at me; I stared at him. The doors closed; the train started again. Finally the train reached my stop. The doors opened, and I shook to my feet. He did not look away. I made my way out to the platform, then reached back to hold open the doors. I held eye contact, waiting to see if he would follow. He did not. I let the doors close, and he disappeared. I have never seen him since.

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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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