Don’t Let ALS Define Who You Are

Once in a while, a newly diagnosed ALS patient will reach out to me and ask for help in their adjustment to life with ALS. I’m always happy to share resources, motivation, and tips, and usually, I begin our online friendship with the question, “Tell me a little about yourself?”

Soon, I’ll receive their reply, which goes something like this: “Hi, I have sporadic ALS with lower limb onset, although I think it’s becoming bulbar. I have to sleep with a BiPAP machine because I have trouble breathing, and I’ve just started taking …”

As I’m reading and wading through the technical ALS jargon, I’m thinking, “Gee, I was expecting answers more along the lines of where this person lives, or about their interests and hobbies.”

Sometimes newly diagnosed ALS patients are bombarded with so many statistics and labels, and so much disease information that it overtakes how they describe themselves. Their focus is on the numbers, and that, in turn, dictates the course of their life.

I believe it’s important to know the difference between relying on numbers and when to trust yourself.

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Defining the day

For example, a while back, my husband bought a new digital clock for our bedroom. But beyond displaying the time, it gives us the indoor and outdoor temperatures, humidity, barometric pressure, plus a graphic image of what the sky looks like outside.

We know that all of those digital weather readouts won’t define our day or how it will unfold. Besides, we can just look out the window and get the same idea of what the weather is. Yup, it looks warm and sunny out there.

My point here is that the numbers don’t dictate our day. Rather, each day is defined by how we react to the events that happen around us.

It’s the same with my ALS — it doesn’t define me.

Adjust, adapt, and live

When I wake up in the morning, my first thoughts aren’t, “Oh, I have ALS, and here are all the ways it will restrict what I can do today.” Instead, I check in on how my body feels, I think about what’s ahead on my schedule, and then I get on with it. Sure, I move and talk more slowly than others around me, but I’m still me.

And throughout the day I make adjustments, to the events and to my ALS.

I know that whenever I pass by the refrigerated dairy case in the grocery store or sit under the cold air vent in a restaurant, I get a sudden case of top-to-toe shivers. That’s because ALS causes my body to be sensitive to sudden temperature changes. Rather than suffer in anger or avoid these situations altogether, I tuck a small hand-knitted scarf in my purse. At the first sign of a sudden cool draft, it’s quickly wrapped around my neck. It’s an easy fix, but it’s also the result of not letting ALS define me.

My goal, and what I tell my online ALS friends, is to focus on maintaining the quality of your life. Live with purpose, meaning, and joy.

Life can be challenging enough with its daily surprises. It’s even more challenging when we’re living with ALS. How do you define yourself? By labels, numbers, and the adaptive devices you use? Or by who you are?

Let’s reach out and help one another. Let’s learn to live well while living with ALS.

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