The elephant in the room: How ALS changed my mental clock

During the first year after my ALS diagnosis, I was overwhelmed by the physical changes I was experiencing as I learned to eat, move, and speak in new ways. One of the most significant developments was the impact ALS had on my perception of time. It was as if time had taken on a unique and almost surreal flow.

This realization didn’t make navigating life with ALS any easier, but it has given me useful insight. And by sharing my journey, I hope you’ll find something insightful and relatable as well.

Before ALS, I lived with the easy confidence of having a long future ahead, setting big goals, and making detailed, multiyear plans. When the diagnosis hit, everything changed. Suddenly, the elephant in the room wasn’t the disease itself, but the limited clock. Hearing the words “life expectancy of two to five years” shattered my old assumptions and made every second significant. In the fight, flight, or freeze response, my mind immediately went into the freeze phase. I couldn’t look forward, so I simply avoided making plans altogether.

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A new future

I remember feeling discouraged when I found my old, fancy planning journals that were filled with ready-made life prompts. The question, “What do you want to accomplish one year from now?” triggered a cynical, gut-punching response: “To still be here.” Yet, paradoxically, the progression of my ALS symptoms spurred me into action. I became intensely motivated to maintain my current physical abilities for as long as humanly possible. This led me to set specific personal fitness goals, turning my regular ALS clinic appointments into mile markers for success.

The simple act of practicing mindfulness provided a powerful way to halt the worry about squandering my precious remaining time. I could anchor myself in the now.

A new resolution

The annual custom of making New Year’s resolutions felt alienating. Lose weight? Save more money? Those big, sweeping goals were suddenly pointless. Instead, I established my own quiet resolution: the intention to simply be. This resolution is reusable, gentle, and forgiving. If I “fall off the wagon” one day, it doesn’t matter; I can always try again the next moment.

This process has led me to a new approach: using these final months of the year to take baby steps toward next year’s intentions.

It’s less about grand resolutions and more about being honest with myself about what needs to be let go. I’m reflecting on what’s working, tidying up habits that aren’t, celebrating small wins, and giving myself space to make smarter decisions about how I use my energy.

My updated goals

For me, that means focusing on concrete, immediate goals: more leg strengthening so I can smoothly transition from sitting to standing, or taking time to fine-tune my pronunciation of difficult words like “six,” “scooter,” and “fork.” And, yes, starting the new year with a completely decluttered closet.

I invite you to try out the bits and pieces of my experience that might work for you. Join me as we continue to learn how to live well while living with ALS.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.