Witnessing the power of positivity in the NMOSD community
Those who share their experiences bring hope to the community at large
Life hasn’t always been easy for me, or for any of us, for that matter. I’ve seen and experienced things that no one should have to face. As the saying goes, what doesn’t kill you makes you stronger, right?
A big part of my perspective comes from my youngest daughter, Bella, who was diagnosed with neuromyelitis optica spectrum disorder (NMOSD) in 2017, at 9 years old.
NMOSD is a progressive autoimmune disease that affects the nervous system. When Bella was diagnosed, she was in extremely critical condition. Her team of doctors didn’t know if she would survive, and if she did, she might have to relearn how to walk, talk, and even swallow. As a mom, the fear of losing my little girl was devastating. Bella’s life was just beginning, and she had so much living to do.
After taking time to process the diagnosis and speaking with my mental health therapist, I gained a new perspective and decided that Bella’s fight would be my fight, too. I’d make sure that no one would forget her or this new, life-changing journey we were on.
Since then, I’ve become a voice not only for Bella and the NMOSD community, but also the rare disease community at large. As Bella’s mom, I will do anything I can to help her and ensure that she lives a long, healthy, and happy life.
Beauty and magic
In the past seven years, I’ve had the honor and privilege to share my perspective as Bella’s mom and caregiver. My hope is that by having a positive perspective, we can overcome anything and do whatever we dream of doing. While the journey is difficult at times, I’ve learned that maintaining a positive view on life and taking care of mental health are key to conquering the challenges.
While I’ve experienced the worst in life, I’ve also learned that there is beauty and magic in every day. Life is what we make of it. In the years that I’ve shared Bella’s story, so many folks in the NMOSD community who live with positivity have inspired me.
I’ve spoken with people who were completely paralyzed due to NMOSD but never gave up. They worked with what they had and took steps to be able to use a wheelchair, then a walker, and then a cane. Some have even completed marathons despite being told they would never walk again. The common denominator in these patients is that while they knew the road ahead would be tough, they stayed positive and never gave up.
I was recently asked to share my caregiver story on a four-person panel organized by the biopharmaceutical company Amgen, which markets the NMOSD treatment Uplizna (inebilizumab-cdon). The prerecorded panel discussion will be streamed on Facebook on May 16. The panel features Christine Ha, the blind chef who won season 3 of “MasterChef” with Gordon Ramsay and has two wonderful restaurants in Houston. Christine has NMOSD.
Taylor Ann Macey, a life coach, nutritionist, and NMOSD patient, moderated the panel, which also included Amy Sullivan, a psychologist and professor of medicine who focuses on mental health in people with chronic illnesses and their family members.
Having the opportunity to be part of something so special alongside so many inspirational people from the NMOSD community is something I won’t soon forget. I’m grateful that Amgen is making patient voices a priority and that it provided us the platform and a safe space to share our perspectives and journeys with NMOSD to bring hope to the community.
While each person’s perspective is different, I’ve learned that if we live with a positive attitude, we will recognize the good things in life. As a mom, wife, and caregiver, I choose to be positive every day because I want to be an example for Bella. She may have NMOSD, but NMOSD does not have her, and it won’t ever stop her.
Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).
About the Author
Comments