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The heartwarming love story of this woman and her quadriplegic husband is a must-read.

"How do you bear it? That must be devastating," a colleague said. I'd mentioned that my husband is quadriplegic.

With a familiar tightness in my chest, I answer the same tired question: "It's not. We do just fine." "He lived alone long before I met him," I wanted to say, "and he's a theater professor" — and lots of things that I knew would only sound defensive.

The coworker read my near silence as an admission (of what, I'm never sure. Sexlessness? Solitude? Nights spent gripping a bottle of gin?) and said earnestly, "I'm so sorry you have to go through that every day. I can't even imagine."


I watched the nightmare in his eyes retreat, replaced by a glaze of pity, a softness that I suppose he felt was earned by my hard life. "It's honestly no big deal," I tried again. Too late. The glaze had acquired a sheen.

The politics of disclosure are tricky, and once again I felt I'd done my partner a disservice, however slight.

Though my now former coworker likely no longer thinks of me, he might think of my husband occasionally, his token access point to the homogenized community that is wheelchair users and the pity he thinks he should feel for them and those who love them. From now on, he'll view us and people like us as tragedies — all because I didn't work hard enough to convince him otherwise.

All photos via Laura Dorwart, used with permission.

I didn't tell him about the day my husband and I met to study together at 10 a.m. for grad school exams.

I didn't tell him how coffee turned to whiskey, which turned to singing in a round as he drove me home, or about his first gift to me after two weeks of dating. I'd told him jumping eased my anxiety; he showed up to my door the next week with an indoor trampoline.

Now that I've disclosed his quadriplegia to yet another stranger, my husband is no longer afforded idiosyncrasies or individual traits, all of which he has. He's someone who writes me love letters and teaches improv and is very Virgo about our towel situation and who, unlike me, is quiet and unassuming in grad seminars. Without knowing all this, would my colleague go home and express gratitude to his wife with a "thank God we're not them" subtext?

I knew something of what my colleague assumed because it's what many assume.

I must be up nights, washing the last of the dishes alone, filled with longing that my husband's spinal cord will awaken from its tragic slumber. Or maybe they imagine I'm his "caretaker," a loaded word.

The truth? I haven't cooked one meal this month (too many deadlines), and my husband usually stays up with the baby (I'm a morning person).

He's spent far more time serving as my lay psychiatrist and priest-behind-confessional-screen than I've spent on any of his medical care. He sings me to sleep. I am usually a nervous wreck about everything except his paralysis. Unlike my symptoms of anxiety and depression, his disability is a constant, the only thing that isn't a what-if.

Still, being the ostensibly able-bodied partner to a physically disabled person comes with its fair share of emotional labor.

Emotional labor, in many cases, involves the management of feelings, both your own and others'. At restaurants, hostesses' eyes fly open, anxious, before they whisper to each other — where are they supposed to go? Folks trapping us in the wheelchair van by parking in a loading zone look sheepish at best or sometimes defiant: "What's so special about you?"

Is the usher going to know where to seat us? Will we be turned away? Will the doctor actually speak to him or will she look over his head and into my eyes instead? It's watching someone else be hurt and disappointed — not by an internal source, like my depression, but by others, by buildings even — over and over again and being powerless to do anything about it, unable to unwind the tension that coils in someone's back when they are expected, day after day, to prove they are not a burden.

It's keeping the strained smile on your face when he plans an anniversary dinner at a restaurant that advertises itself as accessible, a claim that proves false.

You find out that "accessible" means that some people get helped up the steps to the only entrance. The manager offers to have a busboy carry him. "My chair weighs 300 pounds," he says, incredulous. The manager shrugs, as if to say, "So? What did you expect?"

He's now supposed to spend the night apologizing for taking up space, and you are supposed to pretend you don't notice. He defends himself well, as always, but his shoulders slump and his eyes shine with hurt, even over cocktails elsewhere after you leave. You want to scream at someone or at least write a strongly worded letter, but there is no one to write to.

It's being afraid not of a disability itself but of everyone else's fear and discomfort, which is displaced onto you as the assumed caregiver. "Don't look at me like that," I want to say to the pitier. "Just build a damn ramp."

Our reality is so far from the assumptions of others. The wheelchair has been integral to so many of my memories of care I have taken rather than given.

Rides on his wheelchair put our daughter to sleep, and when I was pregnant, I rode on his lap to work. During a depressive episode or a panic attack, I've heard the whir of wheels (footsteps, really) in the hallway and felt my breathing slow because he was home.

This is not part of the wheelchair story that strangers and Hollywood and breathless romances want to tell.

I wrote a story about my depression and post-traumatic stress disorder against the backdrop of a ghost town in a desert we'd visited, and I shared it with a creative writing workshop. I included one line about his paralysis. "Is his body supposed to be the desert?" one of the other students asked. "Because it's empty now, since the injury?" Another says, "It's a ghost town. Is he the real ghost?"

Being in love with someone who's quadriplegic is something like loving a ghost, but not in the way people might think. He is often invisible, and if seen, there is just one thing about him that most people seem to notice.

A story with a ghost in it is a ghost story first and foremost, not a story about sports or romance or a family conflict. Similarly, the wheelchair functions as the focus of every story we can construct. Even though you don't want it to, the wheelchair becomes the protagonist, the antagonist, and everything in between.

When I lie awake at night, the honest-to-god truth is that I don't fantasize about miracle cures and redemption songs. I dream of ramps.

Ramps leading up to showers and houses and waterfalls, to haunted hayrides and carriages and job interviews and Capitol Hill. And level ground that fulfills its rhetorical purpose by keeping everyone on the same plane. In my dreams, words become divorced from their meanings; "rustic" and "quaint" become extricable from "tiny" and "crowded," and "winding" and "exclusive" no longer mean a narrow stairway to an underground speakeasy. Restaurant hostesses and flight attendants are not afraid. Doctors listen.

In my dreams, I don't watch him walk. I watch him stop being hurt.

This story originally appeared on Catapult 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.

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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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