Now I celebrate the goals I meet, not the day of my ALS diagnosis

Once in a while, there’s a topic on the ALS News Today Forums that inspires a new column. The question posted was a simple one: “Do you celebrate ALS-related anniversaries?” I intended my reply to be just a simple “Yes.” But I ended up adding, “However, what I celebrate now is quite different from when I was newly diagnosed.” Which led to this expanded explanation.

For the first few years, I’d make a note each time I made it past the date I was diagnosed. Many ALS patients do the same, celebrating their date of diagnosis. They’d post announcements on social media and garner congratulatory messages from friends and family.

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But the concept began to feel out of place to me. It represented the day I learned about the dismal prognosis of ALS and how my life would be changed forever. Who wants to celebrate that? Besides, it was an arbitrary date, more significant for insurance purposes or for qualifying for a clinical study than marking my health status. Like many other ALS patients, my symptoms appeared much earlier.

Nowadays, I shift my focus forward, set goal dates, and celebrate my wins. I plan, prepare, and then give myself a mental high-five when it’s over.

There are the usual biggies, such as planning for a successful ALS clinic visit. Not only do I treat my ALS clinic like an Olympic challenge, I also invent home exercise routines to help me earn high scores on the big day. I schedule my dressing, drive time, and my pre-clinic meal, as if I’m mounting a small invasion. On the drive home, I give myself kudos for a job well done.

Everyday celebrations

However, the small stuff is just as important. I love having a daily routine: set hours for sleep, my usual breakfast, mini-exercise routines, writing my weekly column, and devoting time to knitting. A perfect day, with a perfect ending. I wish!

That’s the thing about ALS. I can map out exactly how I think my day — or even my week — should go, only to have it take a left turn instead of a right.

I have one of those days at least once a week. You know the ones. I think I’m getting things done, but ALS has other plans. Like the day a haircut appointment dissolves into a catastrophe. Or going to the local drugstore for a flu shot turns into an all-afternoon event.

At first, I’ll admit, I’m frustrated. But then the day unfolds into one filled with helpful strangers and humorous moments. When I fall asleep on those nights, I add gratitude to my mental celebrations.

Even though living with ALS is a 24/7 challenge with no days off, I invite you to join me. Look forward and give yourself a mini-celebration every single day.

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.