I’m still learning acceptance in life with MS, but I always show up

In recognition of Multiple Sclerosis Awareness Month in March, the MS Awareness Month campaign features a series of stories highlighting the real-life experiences of people affected by MS, written in their own words. Follow us on Facebook, Instagram, X, and Pinterest for more stories like this, using the hashtag #MSAwarenessMonth, or read the full series.

When I first experienced one-sided facial numbness, I never thought multiple sclerosis (MS) would be the answer. Living with neurological symptoms without a known and proven cause was terrifying, but so was learning that MS was the reason.

The MS symptoms that accumulated terrified me even more. I never expected brain fog so debilitating, muscle spasms so painful, fatigue so overwhelming, pins and needles so burdensome, numbness so weighted and prevalent, balance and walking difficulties so extreme, or optic neuritis-related vision problems, yet here they are, and here they continue to come.

I am still learning how to accept and live with MS. Sometimes, I wonder if I will ever be able to fully accept and live alongside it. Too many days do I ache over what this disease has taken from me, but there are days I am grateful for what it’s taught me to enjoy and to appreciate more.

Spevacek celebrates MS Awareness Month in style, with a background in the signature advocacy color of orange.

When all falls apart, I write. And following my MS diagnosis, when things fell apart in so many ways, I wrote more than ever, leading me to pursue a Master of Fine Arts degree in writing. I appreciate my favorite things, like reading, even more now, when my brain fog lets me read only 10 pages that day. Sitting out on the porch, or checking in on my bonsai, even if just for a couple of minutes, brings me joy, too.

I now acknowledge that I always do my best to show up. Even though I can only do a fraction of what I could do a couple of years ago, I still show up, even if it is different. Some days, that means unloading the dishwasher and needing to take a nap right after, or it manifests as finishing an assignment in three days when it should have taken just a few hours. Even if it requires rest, takes more time and resources, or is limited by my severe symptoms, I still try to show up, and MS has taught me that trying means more than anything else.

I treasure my relationships with the ones I love and care for most. Usually, that is rooting for the Philadelphia Eagles during game day with my grandmother, or a check-in text exchange with a close friend. I treasure the importance and specialness of the ones who understand my limitations but still love and care for me all the same, even when it means I cannot show up the same way others without MS can.

I often mourn my inability to live independently at my age. I struggle to complete basic tasks both inside and outside the house. I cannot drive or work in what was once my dream job. I was put on disability at the age of 26. I constantly wonder if I’ll be able to handle having children or be a mother because of my severe symptoms. I need to rest frequently, and on most days, even “easy” tasks feel out of reach. I can no longer experience relationships as I once did. I also miss being able to walk or spend time in nature, which I used to love.

While I mourn what I have lost to this illness, I also celebrate that simply existing with MS is a gift. MS causes my symptoms, but it also allows me to truly see the beauty in small things that make life meaningful. Even through relapses, new MRI activity, and trying different medications, I’ve learned an important lesson: I may not have fully accepted living with MS yet, but I am learning to appreciate life’s moments more deeply. By acknowledging my daily wins, I realize that life with MS is still a life worth living.