Highlighting the MS Community This Holiday Season and Always

As we approach the season of giving, the Multiple Sclerosis Association of America (MSAA) would like to bring special attention to the many wonderful community members that we serve. With our mission of Improving Lives Today, MSAA genuinely strives to advocate for and prioritize the well-being of all individuals who have been affected by multiple sclerosis. Over the years, we have collaborated with so many inspiring people, and we are honored to be able to highlight their stories.                                             

In the spirit of the holiday season, we would like to share the heartfelt story of mother and son, Monica and Brian, who both live with multiple sclerosis.

“I’ve learned that in any situation, if you are not advocating for yourself, you’re not going to get anything. My name is Monica Proctor Wilson, and I was diagnosed with multiple sclerosis on my 40th birthday after spending several years seeking answers to my symptoms. For four or five years, doctors kept saying that it was fatigue, and that I was overworked and needed to take a break. I believed it was multiple sclerosis, and I started asking about it. People would ask me, ‘Why would you want MS?’ I did not want MS. I just wanted to know what was going on with me,” Monica shared.

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Refresh, Rewind, Release

By Monica Proctor Wilson

Self-care is not selfish.

Self-care is self-love.

It took me many years to not only understand that self-care was not selfish, but self-care was self-love and to also accept this. Of course, I had to learn the hard way. For years, I was the person burning the candle at both ends… and in the middle. I made sure everyone else was taken care of, I checked all the boxes, and I filled in all the roles. My personal theme song was “I’m Every Woman” by Chaka Khan, which I played on repeat in my head. Say amen if you relate.

Then reality hit me. Hard. One day at work, I ran out of spoons before the day even started. I had a relapse due to complete exhaustion and extreme fatigue. After a coworker drove me home, I crawled into bed screaming “I don’t have time for a relapse!! I have to make dinner and be ready for the kids to get home to help with homework.” After taking a quick 16-hour nap, I woke the next morning to find dishes in the sink and clothes on the floor… and you know what? Life kept moving while I was resting and the world had not ended. The earth did not spin off its axis and I did not get sucked into another universe.

Building a Reset Routine

That was the “Ah-Ha” moment that I realized something had to change. I decided to take one day each month to do absolutely nothing. And when I say nothing, I mean nothing. I marked the date on the calendar so everyone knew I would not be available for events, errands, or obligations. That day was reserved for me to sleep, get a massage, binge-watch shows, or literally watch the paint dry on the wall. My body would decide.

My first attempt left me with feelings of complete guilt. It was difficult ignoring that voice in my head suggesting I was letting my family down. But after several attempts, the guilt turned into something else: a requirement that I would set for myself. A promise that I would take time to refresh, rewind, and release.

That was many years ago. My children are now grown, and my husband understands my promise to myself. But each month, I continue scheduling my mental health day because that’s what my body requires. A chance to recharge before the fatigue, stress, or symptoms stack up and force me to rest the hard way.

Why It Matters Especially with MS

Living with MS means we don’t always get to choose how our bodies feel day-to-day. But we can choose to respect our limits and plan recovery time before we crash. By putting a mental health day on the calendar, I shifted from reacting to my body’s emergencies to proactively giving it what it needs.

Your Turn

I know understand that self-care isn’t selfish…It’s self-love. It’s about survival and strength. Taking care of yourself allows you to give more to others. Remember the airline rule: mask on you first, then others.

If you’ve been pushing yourself beyond the limits, burning your candle at both ends, or just need time to recharge, consider this your permission slip to rest. I challenge you to schedule a day on the calendar that belongs only to you. No apologies. No guilt. It may be difficult, and the first attempt may only last 3 hours. But try again and again until you are able to refresh, rewind and release. You have my permission.

I’m Monica Proctor Wilson, and I’ve been living with multiple sclerosis for 19 years. I facilitate a self-help group called SPEAK MS, where we Share Personal Experience and Knowledge of MS, connect, and keep each other uplifted. I’m also an MS advocate and serve on the Government Relations Advisory Council, working to make sure the voices of people with MS are heard at every level. In 2023, I was honored to receive the National MS Society’s Inspiration Award. My passion is helping others find strength, purpose, and community while navigating life with MS.

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Building A Safety Net

By Monica Proctor Wilson

Hi warrior friends,

After living with MS for 18 years, one of the biggest lessons I’ve learned is the importance of building a safety net. I always encourage MS friends to: 1) Research their choice of DMT’s, 2) Find a Neurologist that specializes in MS, 3) Keep a Mental Health provider, and 4) Build a Safety Net.

Step 1- Understanding My Safety Net:
Safety net can mean different things to different people. Before I could start building my safety net, I went to the definition:

Safety net (noun): something that provides security against misfortune or difficulty.

At first, I thought I already had one. I had family and friends that loved me. After the first year, the “Let me know if you need anything” texts faded. Not because they didn’t care, but because MS is complicated—emotionally, physically, and invisibly. I realized not everyone could truly understand what I was going through. 🧡 This isn’t about blame. It’s about recognizing who I needed in my safety net.

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