How to Spend More Time NOT Thinking About Your ALS

 

Among the many challenges, I experienced during my early months with ALS was its effect on my perception of time. Before ALS, I 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. When I heard the words two- to five-year life expectancy, time suddenly became very important!

I had two immediate reactions

First, I fell into the common body-mind stress response of fight-flight-freeze. And second, I began lamenting, if only I’d known that was the last time I would ever (dance, jog, swim, etc.), I would have paid more attention!

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. Brain chemicals such as adrenaline and cortisol are released, our bodies tighten up and we conserve needed energy, so 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.

I knew that worrying, feeling anxious, and angry plus having a depressed immune system would be of no help to my situation. Neither was withdrawing from friends and family and just sitting, sitting, sitting.

My first step to stop my negative 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 these found in Your ALS Guide, “ALS Self-care.” 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 fighting ALS to learning to live with ALS.

Life on auto-pilot

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 in our heads. Days are lost. Years are lost. Time is lost. Every single moment we spend worrying about the past or the future is a moment not paying attention to now.

I’ve heard it said that “My attention is a currency that I have to spend wisely,” and 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 do it!

Here’s a quick example: While you are 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, the temperature of the air on your skin. Continue to read while continuing to feel an awareness of sounds, the air, and your body. That shift in awareness you just felt is ‘active mindfulness.’ As opposed to just reading and blocking out what’s happening around you. Langer, a Ph.D., 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.

Setting 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.

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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Want to read more on this topic? I suggest these posts:

"How to Focus and Attention; Mindfulness for pALS and the People Who Care for Them"

"How to Always Remember"

A version of this post first appeared as my column on the ALS News Today website.

Photo by Dagmar Munn

Dagmar Munn
ALS and Wellness Blogger

"Wherever you go, there you are"

Jon Kabat-Zinn