Some of us have never had to test their resilience, while others have only tapped into it once in a while. And when the reason for a big change was our idea in the first place - - like, choosing to move into a new home, start a new job or go on a diet; very little resilience is required at all.
During my first year of learning to live with ALS, I found I needed all my resilience and then some!
But, as one year followed the next I noticed something interesting. The whole process of accepting, adapting and finally incorporating ongoing changes into my life became less of a struggle. Was I finally wearing down from it all? Giving up? Shouldn't life become harder the longer one lives with ALS?
I wondered why in spite of it all I continued to feel good, retained a positive outlook on life and even looked forward to the future. Apparently, other PALS (People with ALS) experienced similar positive transitions, and researchers were busy studying 'why.'
For instance, it was noted that patients experienced most depression only during their initial year with ALS. Common were the feelings of being helpless and hopeless, they saw their life goals as no longer attainable and much of their time was spent time dwelling on the past.
And then, patients began coping, adapting and reporting increased well-being and quality of life. Their successful coping strategies included: The use of “living in the moment,” improved dietary care, exercise, use of health care services and an increased perception of control over increased physical demands.
Yes, my first year was full of sadness as well. One of my first steps was to begin journaling. I recorded feelings, what I did each day and even collected pages of positive quotes. Every so often, I’d go back and read my earlier pages noting how my attitude was slowly becoming more positive.
I wrote down goals: to maintain my fitness, to continue to participate in activities with friends and family, to write, to pursue my interest in the fiber arts. And then I smiled, realizing that these were the very same goals I had before ALS - - only now, in order to do them I’d have to find a slightly different way, a new path - - it required a change in perception.
Back when I taught wellness classes, one strategy we recommended was to change perception or re-frame our thinking about things that were stressful. I put that strategy to the test during my first year with ALS when I needed to transition to using a walker.
Up to now, my experiences with walkers went something like this: Healthy people used walkers for short periods of time following surgery, and then they got better. Old people used walkers for the rest of their lives, and they didn't get better. I wondered, where did I fit in?
Never the less, a walker with wheels showed up at our home.
Hesitantly, I tried it out and had to admit that using a walker didn't diminish who I was at all. Rather, it was a wonderful piece of equipment. With it, I escaped the confines of a chair. It allowed me to stand up again, with a vertical spine - -my legs and feet bearing my body weight - - the way they were supposed to. With it, I had the freedom to move through the house, roll my own way into restaurants, friend’s homes and attend club meetings. Once the handles were adjusted to their highest setting, I stood taller yet. I practiced strategies for entering and exiting cars, sidling up to dining room chairs, perfected U-turns and even did laps from one end of the house to the other. We soon purchased a second walker, and kept it neatly folded in the trunk of the car; at the ready for future outings.
Finally, I remember telling myself: “It’s 2011, for gosh sake’s! By now, everyone is quite used to seeing other people navigating their way through the world quite fine using wheelchairs, electric scooters, artificial limbs and yes, - - rolling walkers! ”
The lesson here is: re-frame your perception, adapt and learn all you can about the problem and possible solutions. You can control your attitude and your attitude gives you control.
During my first year of living with ALS, I did something else to exert control. Control over what the letters A-L-S meant to me. Just speaking or reading the letters made me sad. Not to mention that they stood for a disease that was difficult to pronounce, spell and ultimately accept. I decided that if I had to feel, read and speak those letters every day, then they darn well better represent something new, positive and more ME.
They certainly work for me.
Try them out - - and let them work for you as well!
Csikszentmihalyi, M. (1990). Flow: The Psychology of Optimal Experience. New York, NY: Harper and Row.
Pagnini, F. (2013). Psychological wellbeing and quality of life in amyotrophic lateral sclerosis: a review. Int. J. Psychol. 48, 194–205. doi: 10.1080/00207594.2012.691977
Real RGL, Dickhaus T, Ludolph A, Hautzinger M and Kübler A (2014) Well-being in amyotrophic lateral sclerosis: a pilot experience sampling study. Front. Psychol. 5:704. doi: 10.3389/fpsyg.2014.00704