Finding the Blessings

Embezzlement Suspect Arrested by TPSO
February 24, 2022
Lafourche Commodity Distribution While Supplies Last
February 24, 2022
Embezzlement Suspect Arrested by TPSO
February 24, 2022
Lafourche Commodity Distribution While Supplies Last
February 24, 2022

Nicki Boudreaux describes herself as many things: a wife, mother, lover of Christ, family person, teacher, and journalist. 

The mother of two and assistant professor of public relations at Nicholls State University also lives a life with multiple sclerosis (MS), but that is only a piece of her story, not what defines it. 

“In the beginning, that’s all you think about. You start to think that that’s how you identify yourself. I became Nicki Boudreaux, the person with MS for a while, and it totally consumed my every thought. Now, that’s not the first, or the second, or even the third thing I think of when I think about myself, but it takes time,” Nicki says.


MS is a disease of the brain and spinal cord in which the immune system attacks the nerves’ protective outer layer, known as the myelin sheath. This leads to lesions that expose nerves, which causes an interference with communication along the nerve track, leading to a range of symptoms that vary from person to person. 

Nicki’s journey with MS began in 2001, shortly after the birth of her first daughter Adele. The new mother says she began to experience a period of headaches, pain, extreme fatigue, muscle spasms and numbness on the right side of her neck and shoulder. After initial tests, her symptoms were attributed to the stresses and anxieties of being a new mother.

Nicki gave birth to her second daughter, Corinne, in 2005. Two-and-a-half years later, Nicki experienced another incident that, unbeknownst to her at the time, signaled early signs of her diagnosis.


“I was carrying her from the parking lot to Church, and my right leg just gave out, and we fell,” Nicki says. “Of course…I started having those weird pains in my neck and my shoulder and the numbness, tingling and headaches, just like I had a few years prior.”

She attributed the symptoms to the fall at first, she says. The pain soon became more than she could handle, though, and she describes the physical feeling as the two halves of her body not belonging together, accompanied by a sensation that water was running down her leg. 

In 2009, Nicki sought answers from a friend who was a pain specialist, and MRIs showed that the young mother had signs of MS. Neurologists determined that results were “inconclusive,” however. 


The following year, her neurologist sent her to an MS specialist for additional tests. Around that time, Nicki began experiencing double vision on top of her other symptoms. 

After what totaled nearly a year and four months of seeking an official diagnosis, a subsequent round of testing in June of 2010 confirmed that Nicki had MS. Although she believes it sounds strange to say, Nicki says she felt relieved to hear her official diagnosis after years of inconclusive testing and falling short of meeting the diagnostic criteria for the disease.

“I would come home from work, and I would lay down on the couch, and I couldn’t get up for hours. The fatigue was crushing,” Nicki says. “When you go that long trying to figure out what’s wrong, knowing something is wrong, you start to think, ‘Well, is this in my head? Is this real? They can’t figure out what’s going on with me.’”


In the early days of her diagnosis, Nicki says she felt both the anxiety of dealing with a physical illness, as well as the hurt over having to put her life plans on hold. At the time of the initial incident in 2009 where she fell, she already had her hands full with life as a mother and educator. 

Nicki’s daughters were both younger than nine years old during that time, and she possessed a full-time teaching job in the mass communication department at Nicholls. She served as president of the parent teacher organization at St. Joseph’s Elementary School, all while applying for PhD programs that would potentially require her to commute back and forth from Mississippi to attend the University of Southern Mississippi.

She says she felt like “Chicken Little”, calling out that the sky was falling. Except in this case, the sky seemed like it actually was. 


“That’s the headspace I was in at the time, so when I fell, and then all of a sudden all this stuff started kind of snowballing after, of course I got off of the PTC. I shelved the PhD plans. I was really just trying to make it through the day and then come home and take care of my family,” Nicki says. “I was in that ‘I can do everything’ mode. I can be Mom. I can be careerwoman. I can be academic. I can be volunteer…and then this literally put on the brakes.”

Nicki credits her faith and family as being the forces that have helped her to navigate life with MS.

A lifelong devout Catholic, Nicki says that the early days of her diagnosis led her to experience the first time in her life where truly understood what it felt like to need God. She developed a devotion to Mary the Blessed Mother, prayed the Divine Mercy Chaplet often and frequented Adoration. Her prayer life, she says, is what carried her through her darkest moments.


“Looking back, life had been easy. I was blessed with a great family, a great marriage, healthy kids, a great career,” Nicki says, “so while I always felt that I was a very spiritual person, a very religious person, and prayer was a big part of my life forever…I never really needed God in that way, like I did when this all happened.”

Nicki also says she has been blessed with a “50/50 type of marriage” to her husband Tony, who has shared in family responsibilities with her.

“I never felt the pressure [that] I’m the one who has to do all the cooking and the grocery shopping and shuttling kids places. He always did an equal amount of that, so I was very fortunate in that I had a partnership in this,” Nicki says. 


For Nicki, navigating the past 11 years of her life with MS has been both a physical and mental learning process that involved overcoming misconceptions of the disease.

She says she was afraid when first learning of her diagnosis, as she was not educated on what MS entailed. The biggest piece was understanding that the form of MS she has is relapsing and remitting MS (RRMS), in which she goes through periods where her disease flares up and heightens symptoms, mixed in with periods where it is “inactive” and returns to a baseline. 

In Nicki’s case she shows symptoms on a daily basis, and those symptoms are exponentially worsened when the disease is in an “active” state. 


“I guess the first time it was mentioned to me, the only thing that I thought I knew about MS was that people with MS were in wheelchairs,” Nicki says. “I learned a lot in those early years…Here I was in my early thirties, and I was thinking, I don’t want to live the rest of my life with this pain, and I don’t want to end up wheelchair bound.”

Another challenge that Nicki found herself facing was growing comfortable with using an assistive device and not caring what others thought of her if they saw her with one. 

Nicki says she has had to learn to do what is best for her without worrying about how it looks to other people – for example, carrying a cane with her to walk around Nicholls’ campus or utilizing a motorized scooter at Disney World. 


“I’ve had to learn when my body is telling me I need to rest. I’ve had to learn when to say no. I’m not good at saying no,” Nicki says. 

Several years ago, actress Selma Blair opened up about her personal MS diagnosis, going on to walk the Oscars red carpet and make public appearances with a cane in hand.

Nicki praises Blair, as well as MS public figures and bloggers, for normalizing the idea that using a mobility device to aid with a disability does not make a person “less than.” She says that Blair’s public appearances with her cane have helped to end the stigma that a woman can’t still be beautiful and empowered with a cane. Before then, Nicki says she would avoid going places out of fear that anyone would see her with her cane, despite encouragement from friends and family to go out in public.


A few years ago, Adele was a maid for the Krewe of Christopher in Thibodaux. In the weeks leading up to the parade’s tableau, Nicki was struggling with her symptoms. 

A few days before the ball, she realized she would have to use a mobility device. Words of encouragement from Adele and the support of the other maids’ mothers, though, led Nicki to attend the tableau – cane in hand. 

Though she usually hides her cane when she takes photos, Nicki says she even left it in pictures for the first time ever.


“Adele reminded me about Selma Blair, and she said, ‘Mama, you need to use that cane. We’re going to bling it out, and we’re going to make it match your dress, and you’re going to use it, and nobody is going to think anything about it,’ and she was right,’” Nicki says. “It took a lot of people lifting me up to get to there, but it was a very empowering moment.”

Today, Nicki says her day-to-day symptoms include double vision and a secondary movement disorder called hemidystonia that affects the way her muscles operate on the right side of her body and causes muscle tension and spasms. 

She also frequently experiences tingling on her right side, though she says she often doesn’t notice this symptom is occurring. She also experiences a level of fatigue at almost all times, for which she takes medication.


Sometimes, she experiences flare-ups during periods of heightened stress or exhaustion, overheating, or illness. It is during these periods that symptoms include increased fatigue and muscle spasticity, as well as internal vibrations. 

True relapses lend for weakness, tremors, difficulty moving or lifting her right leg, and weakness in her core. 

While there is no cure for MS, there are countless treatments available, known as disease modifying therapies, that reduce the rate of relapses. 


When it comes to health and facing a medical diagnosis, Nicki has words of advice drawn from her own experience. The first, she says, is recognizing the importance of being one’s own advocate. 

“If you know something is wrong, don’t stop until you get answers…You know. You know in your gut that something is wrong,” Nicki says. 

She also stressed the importance of continuing to live out one’s purpose, even with an illness. For her, that purpose was continuing to work and asking for the accommodations needed to allow for that to happen.


  The final piece of advice is accepting help and asking for help, something Nicki says she struggled with during the earliest days of her MS journey. She describes herself as a “doer” who found it hard at first to say yes when friends and family offered help.

“Somebody told me once that when you accept someone’s help, you are actually blessing them by giving them the opportunity to serve you, and so I try to remind myself of that,” Nicki says. 

Despite the challenges that MS presents, Nicki remains a proud mother and educator, describing her work as her “passion.” She says that administrators at Nicholls have done everything they could to keep her teaching, and students have rallied around her, writing her notes and finding other ways to put a smile on her face. 


“I had a group of students that went to Walgreens and bought a cane and decorated it in the most hideous fashion you could imagine,” Nicki laughs. “But they did it just because they wanted me to know that they were there for me.”

She also says that her MS diagnosis has helped her to realize how valued she is by her family and friends, particularly through the “little things” they have done to show support and encouragement throughout her 11-year journey. She likens her experience to a song that debuted around the time she was diagnosed and carried her through the beginning of her experience, namely “Blessings” by Laura Story:

What if your blessings come through raindrops?


What if Your healing comes through tears?

What if a thousand sleepless nights are what it takes to know You’re near?

What if trials of this life are Your mercies in disguise?


“The people in my life, the relationships with them, the relationship with God, the fact that I made my career at Nicholls,” Nicki says. “It kind of shows you that while the path was sometimes rocky, it was good. Ultimately, it was good.” 

 

Image by Misty Leigh McElroy