With MS, strength has nothing to do with being OK

Michelle Lesmeister posed for this headshot in February 2025. (Photos courtesy of Michelle Lesmeister)

Day 23 of 31

This is Michelle Lesmeister’s story:

“You’re the strongest person I know — you will be OK.”

Lesmeister takes her dog Barrett for an afternoon walk.

Who wants to be just OK? I don’t. I feel I’ve thrived in whatever I’ve chosen to do. I understand that friends and family mean to be supportive when they say these words. They want to reassure me I have the fortitude to manage the daily struggles of the incurable and unpredictable disease that is multiple sclerosis (MS).

I can cope with the incurable part; it seems a lot more manageable than dealing with the unpredictable nature of MS.

When I was first diagnosed, I focused on diet, medicine, and rest. I have the strength to manage the disease. But sorry folks, that just doesn’t do it.

What is the unpredictable aspect of MS?  It’s dealing with situations that impact me daily. Most people function without considering if their bodies will respond as their minds direct.

• Will my hands work when I stand at the front of the classroom and write on the whiteboard?
• Will I make it to the restroom if I’m in a meeting?
• Can I hold an item without dropping it?
• If something drops, will my fingers be able to pick it up?
• When dining, what will make it into my mouth without an issue?
• Is my signature going to be recognized as mine at the bank?
• When I can’t find or pronounce a common word, do others notice?
• Is that burning and tingling sensation due to a urinary tract infection or a nerve acting up?
• Will the handrail hold me if I trip over my foot drop?
• Will I feel better or worse after this nap?
• Does the nerve burning in my legs mean disease progression?
• Can I get medicine in easy-to-open containers?
• Is this a flare-up or something else?
• Am I going to fall or stumble if I’m outside walking?
• Did I feel the lock click when I pressed it with numb fingers?
• Will my energy hold until the end of the day?
• Can I sit in the dental chair for an hour without tremors?

Lesmeister gives a presentation to the adult educators of Washington State.

That’s a sampling of the questions I must ask myself each day. I’ve found that, most days, I find workarounds for everyday situations. For some actions, I must ask for help and accept what is provided. Other situations call for me to be creative, like placing a rubber band around a whiteboard marker or a paper coffee cup to provide a tactile aspect I can wedge my finger against to maintain my grip.

Another example is doing challenging intellectual tasks in the morning.

So, when people chirp “You will be OK!” I am reminded that their understanding of MS is limited, and they’re, luckily, outsiders to this disease. As an insider, I must persevere and educate others about my present limitations. I must be better than OK. The truth is that until you can’t do something, you might not know your challenge.

In recognition of Multiple Sclerosis Awareness Month in March, the MS Community Spotlight 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 #MSSpotlight, or read the full series.