The Importance of Staying in the Moment When You Live with MS

It’s easy to focus on the future. But it’s not helpful.

I recently heard on a podcast about living with multiple sclerosis that the worst symptom of MS is fear. I’m inclined to agree with that.

Even before I was actually diagnosed — when I still only suspected I had MS — fear showed up at a level I had never before experienced. I was terrified. My family was terrified. What did it mean for my body, my finances, my future?

To make the fear even worse, no one could really give us any solid answers.

It turns out that fear feeds off uncertainty. And fear lives in the future.

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Trained for the future

I often joke that if you ask my mother today what she’s doing in July 2025, she’ll be able to tell you. She’s the most planned-out person I know. If it’s Saturday, she’s wondering what to make for lunch on Wednesday, and what the parking downtown will be like next Friday. When my son — her grandson — was in preschool, she was wondering what he would do after high school.

Because of my mother’s influence, my ability to stay focused on my future when I was younger made accomplishing and achieving goals a natural way of being for me. I believed that as long as I remained focused on my future, and employed my sophisticated planning skills, I could feel as if I had my life under control.

But once my neurologist confirmed my MS diagnosis, the future was no longer something to conquer. The future was daunting at best, and any sense of control over my future vanished.

And yet, I couldn’t stop thinking about what the future would hold. The people around me couldn’t stop wondering about it, either. We all had seemingly endless questions about how I was going to manage, and I struggled to come up with answers that satisfied me or anyone else.

MS had not been in my plans.

The only thing I knew for sure about my future with MS was that my mind would now be filled with endless and terrifying scenarios of my physical and financial demise.

Change your thinking and change your life

I have had a few specific moments throughout the course of my life with MS when my thinking has spontaneously shifted with such profundity that it has directly impacted how I have lived, or rather survived, with this chronic, often terrifying disease.

One of these moments happened while I was standing in my bedroom, years ago (when I could still stand), and I was putting away laundry.

I remember thinking, while I was bending over, tucking a folded shirt into the drawer of my vintage black dresser, “I feel happy.”

Instantly, I noticed that a part of me just couldn’t let that happiness be. There was a voice in my head that was almost shaming. “You’re not happy. You’re sick. For you, happy is simply ignorant and foolish.”

Clearly, my “voice of reason” expected that I would just settle back into my usual state of well-hidden panic about the future and be grateful for the reminder that my life was doomed.

But a part of me wasn’t going to buy into that view that my happiness was just ignorant and foolish. It felt good to be happy!

So, I simply but firmly argued back, “But I am happy right now.”

The power of right now

I believe that was the first time in my life that I ever felt the power of the present moment.

Now, if someone else had suggested that I stop living in the future and just succumb to the present moment, I would have been not only puzzled as to what they were talking about but also defensive and angry. Didn’t I already tell them that I live with a terrifying, incurable disease? The utter audacity of suggesting such a menial thing as living in the present moment!

And yet, it turns out that those who teach mindfulness and how to live in the present moment are right. I have found it to be one of the most important tools I have to help me navigate living with this mentally, physically, and financially scary disease.

Anxiety does not live in the present moment

The present moment is not today. It is not an hour from now. It is not 10 minutes from now. It is now. For me, that means the present moment is 11:57 Sunday morning.

In this moment, I am safe. In this moment, nothing bad is happening. Sure, if there is a real threat — an earthquake, a gun to your head, a car accident, or your basic needs are not met — your fear is very real and a necessary survival mechanism. But for most of us, the crippling fear that terrorizes us is the result of us making up a story, consciously or unconsciously, about something that will happen outside of the present moment.

That story might sound like, “This is only going to get worse” or “I am never going to be able to work” or “No one will want me.” I have hundreds of terrifying stories that I tell myself about my future with MS.

Perhaps, in this very moment, you are on a couch drinking a cup of tea, or in a wheelchair scooting around to find a spot to watch your favorite show or, like me in this moment, feeling my hands becoming weak, my leg freezing and burning at the same time, my back in spasms.

Clearly, I am not in my preferred state of being at this very moment, but ultimately, I am fine. I am actually happy to be writing this article, drinking a cup of coffee, listening to my dog snore and my wife rattle off the grocery store list.

The how-tos of present moment living

Whenever I begin to notice the first feelings of terror, I ask myself if I am in the present moment. The answer is almost always no.

And when the answer is no, I can recognize that a thought outside of the present moment has slipped into my awareness. It’s a thought about later today, tomorrow, or next year. And not just any thought — a big, scary, horrific thought.

Sometimes this thought interruption happens without me even noticing it — that is, until I begin to feel the familiar sense of despair. I then gently remind myself to come back to the present moment.

Next, I ask myself if I am OK.

Again, OK does not mean perfect. It does not mean just the way I would like. It does not mean that I wouldn’t prefer to be a different way. It just means that in this moment, I am OK.

The truth … MS or not

The truth about life in general and life with MS is that unexpected things will happen. Some of these things will be unwanted and unpleasant, like MS, and some will be unexpected and pleasant, like a cool breeze on a hot day or a perfectly timed call from an old friend. I often remind myself that life has surprised me in both ways.

The other truth is that when the unexpected and unpleasant happen, I will handle it. I am already “handling” living with MS and have done so for 24.5 years. I don’t know about you, but I never thought I would be someone who could handle a life with MS.

I know, without a doubt, that one of the biggest reasons I am handling life with MS is because I stay in the present moment and away from the many imagined scenarios that could instantly steal my happiness. And, oddly enough, if I do need to think about and plan for my future, I am actually able to do that with less stress because I understand how to go back and live in the present moment.

I understand now why they say, “This moment is a gift, and that’s why they call it the present.” Learning to live in the present moment has been one of life’s greatest gifts to me.