In life with MS, we are in this fight together

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.

The first time my husband, Matt, revealed to me that he has multiple sclerosis (MS), he was telling me a big secret. It was on one of our first dates.

“I have something to tell you,” he said, pulling me close. “I have MS.”

One of Matt’s favorite hobbies is restoring his very first car, a 1992 Ford Foxbody Mustang, which he hopes to one day enjoy cruising in with his son Archer.

I hugged him and said it would be OK. I remember that palpable feeling of his vulnerability. He had opened up a truth about himself that he was barely able to admit, almost like a guilty confession.

I keep reminding myself in my heart that, yes, I am here for him. When times feel unbearably hard and lonely, when there is no one else to turn to for support, I remember that cold night when he held me close and told me. I remind myself that I have to be his strength. I don’t think I realized back then what that meant, more than the glorified Hallmark cursive font version of what those words stand for. If only I knew how lonely this would be for both of us.

He is strong. He heals very quickly. He is the one I turn to when I need help. His physical strength vastly overshadows mine. He is a military veteran with almost superhuman abilities, stamina, and prowess. Despite my medical knowledge as a practicing surgeon, it is still so hard for me to wrap my mind around him not being able to heal from this.

And yet, little by little, sometimes over days, sometimes over months, there are changes.

He gets fatigued. Unfortunately, that often happens in the middle of trying to exert himself through exercise or even long walks. He stopped walking one day during a trip to Six Flags, saying it was for a phone call. But it wasn’t. He didn’t want to admit he was starting to limp; he didn’t want the kids to see.

Matt and Habeeba enjoy a night out several years ago, when Matt’s vision returned after a temporary loss due to MS.

His balance is off. He can’t ride bikes, and he tries to avoid swings, roller coasters, or anything that puts him off-balance. But he doesn’t tell me, he just disappears. How can he explain that he doesn’t feel like himself when he looks like he should be able to do things the kids and I are doing? That he gets exhausted just from walking around the yard? Sometimes that frustration leads to anger.

I watch him exert himself. I hear him put his fist to his chest while eating a food he loves, because his dysphagia causes him to struggle to swallow. On road trips, he randomly stops to use the bathroom. It frustrates me, but who is suffering more than he is, when his body betrays him with basic needs that he is no longer able to suppress or manage?

One of the hardest things for me to do is to make him feel normal when I know he is angry that he is slowly losing the person that he once was.

We both have to consciously remember that time is precious, and it will be gone soon. It is easy to lose ourselves in the anger and frustration of the daily hurdles and battles that are so different from the ones he was trained to fight.

He tries. Because when all he has is this life, this one is his.