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My wedding was both the best and worst day of my life. Here's what I learned.

10 days before my wedding, my brother lost his fight with pediatric bone cancer.

It was my wedding day.

I stood outside the doors to the chapel. My heart was racing, and I felt my eyes fill up with tears.

I can’t do this.


Before I could turn and run, the doors flung open. I was caught off guard as 80 expectant faces turned to look at me. I scanned the crowd. I saw my family and friends. I saw my dad and stepfather waiting in front of the altar to give me away. But I was going to have to walk down the aisle alone, and that was not how it was supposed to be.

I don’t know how long I paused there. I felt like I couldn’t move.

Then my eyes found my future husband, Joe. And right next to him, I saw a single candle burning on a tall candelabra. Gulp. I looked back at Joe and decided that if I could make it down the aisle to him, I’d be OK.

I felt as if my knees might buckle, but somehow I began walking. It was surreal. I felt as if I were floating, but I eventually made it down the aisle.

Me and my husband-to-be on my wedding day. All photos from the author and used with permission.

18 months earlier, my 16-year-old brother was diagnosed with a rare pediatric bone cancer.

The diagnosis was grim. The prognosis was not good. He was quick to rally. He was going to be fine. He was going to live his life. He was still planning a future. He packed a lot of living in a short time.

10 days before my wedding, he lost his fight.

Now, I look back and I don’t know how my family and I made it through both a funeral and a wedding in such a short span of time, but we did. There would be no postponing of the wedding as I’d suggested. Every single member of my family told me in no uncertain terms that my brother would never want me to put it off. He always said he "didn’t have time for cancer." He didn’t let it stop him from doing the things he wanted to do, and he would be highly pissed if I let cancer stop my wedding.

So, even though we were still in a state of shock, we had a wedding. There were tributes to my brother throughout the wedding, including the single candle that stood where he was supposed to stand as a groomsman. We read a beautiful poem in his memory during the ceremony. We played his favorite song at the reception. And we danced. And we drank. And, inexplicably, we had fun.

15 years have passed since that day.

15 years and I’m still trying to figure out how to move through life without him. 15 years and I’m still learning about how this "after part" works.


A school picture of my brother.

I would gladly trade the things I’ve learned to have my brother back, but I learned a long time ago that bargaining doesn’t work. So usually, I choose to appreciate the lessons I’ve learned instead.

1. I’ve learned to cut people some extra slack.

You really don’t know what people are going through. You don’t know what they have endured. You don’t know what battles they may be fighting.

There were the times during my brother’s illness when I would find myself driving 15 mph in the left lane. I’d be lost somewhere between grief and exhaustion, and I would arrive home with no idea how I got there. There were times when I’d look up distractedly at the grocery store, only to realize that I’d been standing in the middle of the aisle, lost in thought, for 10 minutes.

I used to be the person who honked impatiently and threw dirty looks as I zoomed past a slow driver, but not anymore.

Now I know what it's like to really have a bad day, to be so lost in a world turned on its head that you’re completely unaware of your surroundings. I learned that we all have bad days. Some of us have really bad days. Most of us are just trying to make it to tomorrow.

2. I’ve learned that true compassion and grace are about suspending judgment.

Over and over, I saw that real compassion is giving people the benefit of the doubt: granting them access, assisting them when you don’t know them, being patient and kind even when you don’t know what they're actually going through.

If you have to know the behind the scenes? If you have to know their story in order to be kind? If your kindness is based on an assessment of their pain and if it is conditional? Then it’s not truly kindness; it’s just judgment.

I didn’t get this before. I wasn’t cruel, and I wasn’t mean-spirited, but I was impatient and I was easily irritated. That was before I realized the depths in which people can be trapped while still looking completely normal to the rest of the world.

3. I’ve learned that comfort sometimes comes from unexpected places.

There are people who had a huge impact on me, who helped me through difficult times, and they probably don’t even know the significance of their actions.

Sometimes, for me, it was the soft-spoken coworker who offered me a hug as I was leaving to meet my family at the hospital. He was shy and reserved, but he wrapped me in a big bear hug when I was overcome with emotion. I knew this small gesture was not easy for him to give, but his effort to offered me solace.

In another moment, that solace came from my brash, loud, jokester boss who let me take off as much time as I needed to be with my brother at the hospital. Another time, it was my friend from work who calmly assured me that I would feel joy again after I tearfully confided my fear and pain to her. And often, solace came from my husband’s brother and my sister-in-law, who drove 12 hours to attend my brother’s memorial service.

I learned that an act of kindness, no matter how small, is never wrong. Sometimes it’s the thing that can help someone put one foot in front of the other.

4. I’ve learned that I can still, even 15 years later, be blindsided by the cruel reality of it all.

Sometimes I’ll be sitting at my kid’s swim practice when a memory knocks the wind out of me. The next thing I know, I’m wiping away tears and hoping no one notices.

Sometimes I’ll be eating dinner at a restaurant and the waiter might look just like my brother. I’ll feel the loss and pain take over and overwhelm me. And in these moments, I’m always surprised at the cruel force of grief’s ability to blindside me.

Sometimes I'll see him when my kids do something especially mischievous, and my thoughts unwillingly flicker to images of my brother, to memories of the antics of a little boy long ago.

Me and my brother as young children.

Then, I start imagining what could have been: him egging them on, encouraging their exasperating behavior. And I can almost hear him laughing, enjoying every second of finding a way to torture me as an adult like he did as a little kid.

You can bottle yourself up and try to insulate yourself from it, but let me tell you: It’s not going away, so you might as well let it happen. You’ll feel it, you’ll hurt, but I’ve learned that you’ll also be OK. You will be OK.

5. I’ve learned that I’ll probably feel my brother’s presence forever.

I'll still see him in each of my children, in their personalities, in their senses of humor, which is what my brother was known for.

I'll still feel him when my family is together and my sister and my parents are laughing and we’re giving each other a hard time. I often feel the hair on the back of my neck stand up. I feel a warmth come over me, a warmth hard to describe because it’s unlike any sensation I’ve felt before.

And I hope I'll still feel him, forever, kicking me in the ass when I’m about to chicken out on doing something that scares me. I can almost hear what he would say to me in those situations: Don’t give up. You’re better than that.

I’ve learned to recognize these moments, when I feel him with me. They are bittersweet. They are welcome. And they tug at my heart because they will never be enough.

6. What I’ve realized most of all, after all of these years, is that there didn’t need to be a replacement for my brother.

When we knew, in those last weeks, that it would not be possible for him to walk me down the aisle, I contemplated other options. But in the end, I decided there was no understudy, and there would be no last minute stand-in. I couldn’t imagine replacing him in that role.

And as always, even though my brother wasn't physically there, he showed up. He kicked me in the ass a little and told me not to be scared. He reminded me that I didn’t have time to let my pain stand in the way of my wedding, my happiness.

Me and my husband walking down the aisle after our marriage ceremony.

In the end, my brother was still there with me on one of the best days of my life because he always has been.

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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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