How MS molded my life and taught me to balance grit and grace

As an active 3-year-old, I spent every minute of recess on the monkey bars. I was hyperfocused on getting to the other side. I’d fall and try again until my hands blistered from the hot metal in the Florida sun, and then repeat this cycle the next day.

Grit is defined as courage, resolve, and determination despite difficulty. My 3-year-old self showed tenacity in reaching her goal — an innate mental resolve that became essential. In 2006, at the age of 16, I was diagnosed with an aggressive form of relapsing-remitting multiple sclerosis (MS). For a decade, I fought for functionality against the disease, recovering from significant mobility issues, spasticity, and blindness from multiple bouts of optic neuritis.

I was determined to overcome every obstacle, relapse, and setback I faced with MS. After stumbling upon nutrition as an effective way to manage my mobility, I pursued a career in dietetics and pushed myself through college.

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From the outside looking in, I had grit. But by age 25, after graduating college, completing a 12-month dietetic internship, and not responding to any medication that had been recommended for me, I’d pushed myself as far as I could physically sustain. The mental fortitude I’d amassed to reach these goals came at a considerable physical cost, as I watched my future begin to fade. There were days I couldn’t get out of bed and days I needed help with self-care as severe spasticity, mobility, and vision issues returned with a vengeance.

That’s when I learned that grit without grace can be self-destructive. I treated life with MS just like those monkey bars, with persistence and an unrelenting mental fortitude, but my body desperately needed rest.

Grace is defined as elegance, refinement, or effortless beauty. To me, when living with a disease or disability, grace isn’t the absence of effort or a certain poise; rather, it encompasses kindness, compassion, and patience. That unequivocally includes self-compassion, acceptance of circumstances that are out of one’s control, and not becoming a slave to fear.

So to give myself grace, I loosened that white-knuckled grip I had on perfectionism and controlling every aspect of my life. I reached out for help, and I showed the reality of my life with MS instead of the illusion I was striving to achieve.

Finding ways to keep moving forward

Adding grace to the equation changed everything. In letting go, I landed on a community of support and a renewed faith that helped me continue pursuing my goal of a life without MS. In 2016, I had a hematopoietic stem cell transplant (HSCT) in Moscow.

MS molded my drive and determination and helped me stumble upon my career. HSCT shaped a new future to make that career possible. I’ve been relapse-free for about eight years, and that respite has allowed me to obtain my registered dietitian license and master’s degree in human nutrition and functional medicine. From the beginning, the experience of learning to control my own disease broadened into a passion for researching nutritional sciences. Now, post-HSCT, I’ve become deeply entrenched in working with autoimmune clients to support their journeys.

Since HSCT, I’ve found myself in this gap between health and overwhelming disability. My day-to-day deals with the damage MS left in its wake, complications from trying to treat the disease, and fear that the disease will return for an encore. I paid my dues in MS disability for over a decade and traded active disease for a battle with secondary adrenal insufficiency (resolved), hypothyroidism, and avascular necrosis (with joint replacements in my 20s).

Sometimes the pressure to succeed and make up for a lost decade can be overwhelming. But now, it’s the drive to make someone else’s journey easier, offer a helping hand, and provide a detour sign to avoid the same pitfalls I faced that keeps propelling me forward.

Through this column, I want to help you hold on to hope and find your motivation to keep pressing forward. I’ve got extra grit to share, and I hope we can remind each other to practice grace.

Note: Multiple Sclerosis News Today 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 provider 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 Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.