ALS and Wellness Blog: Time Matters When Living with ALS

Among the many challenges I experienced during my early months with ALS was its effect on my perception of time.

Before ALS, I had pretty much meandered through life in full confidence that many more years lie ahead of me. But with the onset of ALS, all that changed. The elephant in the room became time. And when I heard the words two- to five-year life expectancy, time suddenly became significant!

I had two immediate reactions.

I fell into the common body-mind stress response of fight-flight-freeze. And then, I began lamenting, if only I’d known that was the last time I would ever (dance, jog, drive a car, etc.), I would have paid more attention! Now I don’t even have the memories!

Sound familiar? Here’s how I worked my way out of both states.

Flight-fright-freeze

I remembered from my wellness training that the body-mind stress response of fight-flight-freeze is hardwired into our brains. It’s there to help us react quickly to get out of or avoid dangerous situations.

When we sense a crisis, brain chemicals such as adrenaline and cortisol are released, our bodies tighten up and we conserve needed energy, to help further, even our immune systems shut down. All helpful when having to, say, exit a burning building. But not helpful for the long-term stress of having to accept and live with a serious illness.

Having our body in a state of “high alert” is draining.

I knew that worrying, feeling anxious and angry plus having a depressed immune system would not help my situation. Neither was withdrawing from friends and family, feeling depressed, and just sitting, sitting, sitting.

My first step to stop my fight-flight-freeze stress response was to go directly against the tide of emotions washing over me. I practiced deep, relaxed breathing, followed a daily routine of movement, and began following guidelines such as those found in “Living with ALS.” Habits include good nutrition, regular exercise, proper medication, use of medical equipment when recommended, and attending an ALS clinic and its support groups.

Slowly, I changed my attitude from fleeing ALS, fighting ALS, and feeling numb about my ALS - - to learning to live with ALS.

How I saved new memories

We all fall victim to living each day on auto-pilot while life happens all around us. We pay attention instead to smartphones and the constant babble, or self-talk in our heads. Days are lost. Years are lost. Time is lost. Every moment we worry about the past or the future is a moment not paying attention to now.

I’ve heard it said, “You can make money, but can’t make time,” along with, “My attention is a currency that I have to spend wisely.” I took those words to heart.

No more not paying attention. No more lost memories. I decided to learn to live in the now and be mentally present for everything yet to come. Living in the now is also called mindfulness, and I knew that meditating was an excellent way to learn to be mindful. But, to tell you the truth, I didn’t feel I had the time to meditate! I had ALS, and the clock was ticking!

Luckily, I found the program developed by Ellen Langer, called “Active Mindfulness.” It’s a kind of fast-track method; instead of practicing how to be mindful … you just begin doing it!

Here’s a quick example:

While reading this sentence, allow your brain to be aware of the sounds in the room around you, feel the weight of your body on the chair underneath you, and the temperature of the air on your skin. Continue to read while continuing to feel an awareness of sounds, the air, and your body.

The shift you just felt in your awareness is active mindfulness. As opposed to just reading and blocking out what’s happening around you. Langer, a PhD, refers to THAT state of mind as - -being mindless.

She received a grant from the ALS Association to study mindfulness and ALS, and the results were impressive. Participants reduced their anxiety, depression, burnout, and progression of ALS symptoms. Better yet, participants increased memory, quality of life, their ability to cope, and overall well-being.

New priorities

I’ve since made it a priority in my life to manage my stress and practice active mindfulness. And, yes, I even have created newfound time to meditate! It’s all become a reinforcing loop. The more I pay attention, the more I notice and hold dear the deeply satisfying events happening in my life. Ahhh!

I’ll admit these were difficult habits to break and took dedicated hard work to remember to build them into my day. But I am glad I did. I was diagnosed in 2010, and looking back, being mindful not only helped me create new memories, but also kept me safe when walking, swallowing, sitting down, and using my rollator.

Make this year the one you are fully present for your most memorable moments. Not only will it be a gift of health to your body and mind, but also it will be a very wise way to spend your time.

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