what it feels like: living with multiple sclerosis through kindness and empowerment
8 minute read
"i’m really big on performing acts of kindness, and i do believe that helps us, and so that’s been a way that it’s changed me for sure," says gaby (with one b).
shannon laliberte
stay up to date on this topic
gaby mammone, known by her community as gaby (with one b), has accomplished a great deal in her life. professionally, she is a speaker, communications expert, leadership & workplace culture coach, speech mentor, and kindness amplifier. in her personal life, she’s a wife, mother, friend, and caregiver to her mother.
gaby has done all of this with multiple sclerosis (ms), a disease she’s had since her late 20s when she started to notice a loss of peripheral vision in her left eye. her symptoms also included incontinence, and extreme pain followed by numbness in her legs and hands.
since she was young, gaby was living her life to the fullest. she was newly engaged, had a fulfilling role in human resources, was on track for a promotion at work, and was spending time with her friends—she was a typical young woman doing everything she could to create the life she wanted to live.
over the course of the following four years, gaby spent her time working with doctors and going through all the testing she could to figure out what was going on within her body. when she was 30 years old, she finally got her ms diagnosis.
“at the beginning, it was very overwhelming. no one that i’m aware of in my family or extended family had or has ms or any sort of neurological issue, and so it was just very new for us,” she said. “i don’t even think i knew what it was.”
after she was diagnosed, she enlisted the help of google alongside her neurologist to aid in her understanding of her disease so she knew exactly what she was up against. she started attending support groups, kept most of her community in the dark about her diagnosis, including her employer, and took her time to process what it meant to have ms and how her life would be affected.
it wasn’t until she had no choice but to disclose her new normal to her employer and others around her, except her immediate family, who already knew, that she shared her secret.
advertisement
“i would wake up sometimes with numbness or tingling in my feet and that would prevent be from being on time at work, and so with them not knowing the real reason, then i found myself being dishonest as to the reason why i was late and that was against my character,” she said. “so, i realized that was the time that i needed to tell my employer.”
after gaby told her employer, she realized that she “had built this stigma in my mind” because of how understanding her boss was. she assumed people would judge her and that it would prevent her from moving up in her career, but the opposite was true.
“i found that people were accepting when i was just honest,” she said.
using kindness to cope with a new ms diagnosis
after gaby was finally able to open up to everyone in her life about her ms diagnosis, other things began to become clear to her as well. she needed to be more involved with ms canada, an organization she holds near and dear to her heart because of how helpful they have been throughout her disease journey. to this day, she continues to volunteer at events like trivia nights and other activities.
her efforts in kindness came naturally to gaby because she believes wholeheartedly that giving back to others isn’t transactional. being there for others, helping where she can, and showing kindness to as many people as possible benefits her and everyone else in the ms community.
by getting involved and being more proactive with her illness instead of hiding it, gaby also came to realize that her life didn’t have to be over because of ms.
“i have a disability, but i can still live a normal life,” she said. “i’ve altered my life, no question. i have awful symptoms. one of the worst symptoms that i have is when i lie my head on a pillow at night, i feel like someone’s pouring a thousand bugs all over me. the itching i have on my skin is awful, and nobody sees it. nobody knows it.”
advertisement
her unique symptoms aren’t always present with people in ms, but for her, it can lead to significant discomfort that only a fork by her bedside can solve.
fighting against self-stigma and making lemonade out of lemons
gaby spent a lot of the early days after her ms diagnosis feeling overwhelmed, crying, and trying to understand what was happening to her body. she grappled with questions, some coming from herself and others coming from friends, about what her new future was now going to look like.
“i was just so overwhelmed with emotion, and so many people would say, ‘you just got married. are you going to have kids?’ and then it was like, i don’t know,” she said. “can i have kids? i don’t know. are my kids going to have it? and am i going to be a good mom? and so there was all this pressure. as well, is my husband going to stay, and am i going to be in a wheelchair?”
the million questions she fielded from herself, as well as the curious minds of others, began as a significant source of uncertainty for gaby. but it also presented her with an opportunity to act now so that the future version of herself would be better equipped to handle her changing life.
“i even started an online business, and it wasn’t my full-time career. it was just something for residual income in case i needed to work from home one day because of mobility issues or in case there would be progression,” she said.
while having a backup plan was helpful for gaby, she admitted that it wasn’t all positive.
“that’s such a heavy way to live. i wasn’t living in the moment,” she said. “i was living this life of being afraid of what could happen. but there was a shift about five years in.”
instead of asking, “why me?”, gaby began to flip the script to “why not me?” this small but significant perspective tweak drove gaby to a new stage of her ms diagnosis: empowerment.
advertisement
living empowered with ms
gaby decided that she wasn’t going to spend her time asking unanswerable questions. instead, she used her diagnosis as an opportunity to take things into her own hands and help others along the way.
“i’m going to use this to empower myself, empower others, and show people that i can live a relatively normal life,” she said. “and you know what? i’m going to be okay.”
she still deals with the symptoms of ms, such as lethargy, which has caused her to miss out on social opportunities she would have loved to be a part of. she can’t move as freely as she once could, and her balance has been affected so severely that she’s gotten injured, from breaking her leg and toe to cracking her tailbone.
“i just have to be very careful. every step for me is intentional. i can’t just jump out of bed and go to the grocery store,” she said. “it’s not that easy. i have to slowly get out of bed and stand up.”
she also does self-checks for pain, morning exercises to help her get moving, and fights against letting her mind wander into negativity because “mindset is key.”
gaby takes the horrible aspects of her disease in stride and continues to be grateful for what being diagnosed with ms has given her instead.
“having ms has allowed me to slow down when i need to,” she said. “you only have so much capacity, and we as humans, and maybe as a woman, as a mother, a nurturer and an entrepreneur, a caregiver for my mom, there’s only so much that i can do. so, it’s allowed me to be able to prioritize so that i make time for my health, my well-being, mentally and physically. it’s allowed me to be very, very empathetic and truly believe in diversity, equity, inclusion, and belonging.”
she also notes that she has gained so much from being able to not only speak with people who are impacted by adversity, but also to be a voice for those who may not be able to use theirs.
advertisement
“it’s given me the opportunity to meet so many beautiful people and impact lives and teach people how to share their message and live with hope and optimism and kindness and connection,” she said. “i would say it’s brought me so much. i’ve impacted many lives that i don’t even know, so it’s beautiful that way.”
leaning on those in your corner and practicing self-care your way
as gaby has gone through her journey from being diagnosed with ms to now helping others find their voice, she has also learned one crucial aspect regarding what it’s like to live with a chronic disease.
“you really need to know who’s in your corner,” she said.
she notes that knowing who’s in your circle of support and being courageous enough to lean on them when the occasion calls for it is all part of living with ms.
“i know who i can lean on. i know who the support people in my life are, and sometimes i do need that help,” she said.
practicing personalized self-care is another essential component of not only dealing with ms symptoms but also keeping your mind focused on the positive side of things.
“i focus on what i can do well, and sometimes it needs to be done with my eyes closed and deep breathing. it might be yoga. it might be journaling. it might be just resting,” she said. “i don’t let a day escape me unless i perform one act of kindness, minimum.”
she continued, “and that could be writing a review online or that could be texting a friend to see how they’re doing, someone i haven’t spoken to in years. it could be going outside and picking up some garbage. i’m really big on performing acts of kindness, and i do believe that helps us, and so that’s been a way that it’s changed me for sure. i think it helps me feel better when i can be kind to others.”
share story
