My experience with multiple sclerosis (MS), which began in late 2015, has been marked by challenges, resilience, and a profound sense of gratitude. In the few years following my diagnosis, I faced numerous relapses and rounds of steroid infusions. I tried various disease-modifying therapies (DMTs), from injectables to oral pills, to manage the disease. I was constantly juggling my MS with my teaching career, a part-time job, friendships, travel, and everyday life, which was challenging at times, but I managed the best that I could.

In late 2019, that balance flipped like a light switch, but something felt different from the typical MS flares I had experienced. I began to suffer severe cognitive impairments – mixing up numbers and letters while grading tests, struggling with aphasia, and feeling increasingly disconnected from my thoughts. Overstimulation from lights and background sounds had my brain misfiring like crazy, making it nearly impossible to process information.

After a visit with my MS doctor and a new round of MRIs, my life as I knew it was forever changed. The radiology technician met me in the dressing room and said, “You shouldn’t drive home” — a moment that’s etched in my memory. The MRI had revealed an enhancing tumefactive lesion on my brain, a rare type of lesion in MS that mimics a brain tumor. Typical MS lesions range from about 2 to 10 millimeters, about the size of a poppy seed to a coffee bean; mine measured 2.4 centimeters, about the size of a quarter.

 

What followed were ten rounds of steroids, a switch in disease-modifying therapy to an infusion, and numerous doctor visits along with frequent brain MRIs. This drastic cognitive decline, coupled with overwhelming fatigue, seeped into every aspect of my life — reading/writing, thinking, and activities of daily living. I found myself battling to function in ways I had once taken for granted. I began intensive speech and language therapy, attending sessions three to four times a week, which continued until the onset of the COVID-19 pandemic.

Financial struggles paralleled my medical ones. I used up every sick day, eventually had to leave the career I loved, lost my private health insurance, and found myself tangled in a long-term disability plan with a complicated pre-existing condition clause. It was overwhelming, to put it mildly. But through it all, one thing stood firm—my support system. The love from friends and family, along with the lifeline of resources I never imagined I would need, reminded me just how powerful community can be.

I began receiving SNAP benefits. I was lucky to have MassHealth (Massachusetts Medicaid) as a safety net, allowing me access to the essential healthcare, therapies, and treatments I needed to manage my MS. I applied for and was approved for Social Security Disability Insurance (SSDI). I completed a Driving Assessment Program, which helped me regain a piece of my independence—something I had desperately missed. The pandemic threw its curveballs at everyone, but surprisingly, it also brought a few blessings, offering additional financial relief just when I needed it most.

 

While MS has closed certain doors in my life, it has opened new and fulfilling ones by bringing extraordinary humans into my life that I would not have met otherwise. I proudly serve on my city’s Commission on Disability, participated in the Massachusetts MS State Action Day, advised the board of directors for MS is BS New England, and became an ambassador for MS4MS. These roles empower me to make a real impact, fueled by my commitment to advocacy and a deep appreciation for the strength that comes from community.

I joined the Boston Area Support Group through the National Multiple Sclerosis Society (NMSS). I am endlessly grateful for their unwavering support, encouragement, and friendship with my “Support Squad”. As a group, we have participated in the NMSS MS Walk: Boston, and MS is BS Walk Run + Roll as a top fundraiser. Another dear MS friend and I have also conquered the steps at the NMSS Climb to the Top Event at Gillette Stadium!

 

Over the past five years, I have discovered new hobbies — I love to garden, paint, read, play brain games, and do puzzles. I have always been an animal lover — I have two cats, Tumi, named after my lesion, and Bean. Plus, I started dog walking twice a week. The hardest half hour of my week, yet the most empowering, is learning to box thanks to a program called Punch for Parkinson’s, which also works with individuals with MS. I have taken on new opportunities, such as being a part of the Infusion Access Foundation’s Champions’ Weekend and new heights with rock climbing in Colorado through the First Descents MS Program.

This journey has not defined me, but transformed me into a warrior, strengthening my commitment to community and fueling my passion for raising awareness, fundraising, and advocating for those living with MS.