In a post titled Seeking Wisdom: Purpose and the TurboCharged Life, published in February, I introduced the ALS-TLS. The “TLS”, or turbocharged living scale, is a 12-item questionnaire meant to track personal growth, or flourishing in people affected by ALS (available for review in our recent article referenced below). I created it as a companion to the ALS-FRSR, which is the functional rating scale universally used to track  the physical decline of ALS.  Having witnessed abundant and inspirational flourishing throughout the ALS community, I wanted to explore how flourishing can expand during times of tumultuous stress and existential crisis, typical of people living with ALS. Moreover, by directly addressing the potential domains for growth, I envisioned the ALS-TLS to create opportunities to acknowledge and support human flourishing amidst rapid physical decline.

Studying post-traumatic growth has long been a cornerstone in the field of positive psychology. Calhoun and Tedeschi published their Handbook on Post-Traumatic Growth in 2014, describing the basic principle. In summary: Given the proper circumstances and support, challenging life events can fuel transformational, positive growth.

Transformational growth always involves intentionality and an openness to change. Peggy and I write about this in an article published this month in Virtues and Vocations. (Available on our blog by clicking here.) We describe how redefining or refining life’s purpose, in the wake of a catastrophic event like ALS, builds practical wisdom. The path toward wisdom, like the process of post-traumatic growth, includes acceptance of the new reality, followed by stepping into the new reality to build a new narrative. Building practical wisdom, we conclude, is also the surest path to building true hope.

The “TLS” is an attempt to begin a conversation and stimulate curiosity about post-traumatic growth using 12 aspects of daily life that shine within the ALS community. I see these 12 domains as ‘standouts’ among my favorite ALS kin. They also resonate with Peggy and me as key areas of growth that flow 

from the challenges and adversity posed by ALS.

Adaptability

1. I enjoy my routine and I prefer to keep things as they are 
2. I am learning to be flexible in new ways
3. I am now making changes to how I do things with minimal resistance
4. I am adapting to life in ways I could never have imagined 

Like every last person with ALS, I must adapt to unrelenting physical changes, becoming more dependent on others as the disease progresses. What began as a reluctant request for help with shoes and socks has become a daily wrestling match with every piece of clothing. Peggy has replaced most of my wardrobe with men’s size large to make it less of a struggle to dress.

Getting dressed these days is as involved as all the other usual daily activities we take for granted. 

Here’s a current snapshot. My underwear and pants go on while I am still seated in the bath chair, and remain around my ankles until I am assisted to stand at the walker. Rising to the walker is its own little novelty, slipped in between dance steps, like a dip in the foxtrot or a lunge that embellishes our tango. While standing, the pants come up and the dance continues. Depending on how I am feeling at the walker, and who is helping me (5 individuals, each with their own particularities), we may finish dressing, contact lenses, hygiene and grooming at the walker, or I may transfer back to one of my power wheelchairs to finish up. (note: my left arm and hand are no help; my right arm can be useful only when placed where it needs to be).

I’ll leave it to you to imagine how this process might work in reverse when I need to use the bathroom.  For bonus points, you can ponder how the process changes in a busy airport restroom, or at a restaurant without handicap access.

As for eating, I remember the first time I needed help cutting a steak. We were out with friends and I had not considered the need for assistance when I ordered. Peggy saw me struggling and quietly asked if I could use some help. Then she cut my steak without missing a beat. Friends with ALS have recounted similar stories of their first times facing the unexpected need for help with eating or drinking.

These days I choose to eat before our guests arrive. The process of eating and being fed is too precarious for most company. I tend to cough and gag, and it can be unnerving even for the seasoned observer.

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Clinic nurse: Jimbob, Peggo …we haven’t seen you in a while.

Peggo: Time flies.

Jimbob: …Almost two years …

Nurse: Welcome back, it’s good to have you back.

Jimbob nods.

Nurse: Thank you both for completing our new questionnaire which we hope will be a discussion starter. We need to hear about the positive aspects of your life, because we know that there is more to life than ALS. Understanding your strengths and hearing about positive changes you have experienced since your diagnosis will help us to support you better.

Peggo: Sounds wise.

Nurse: Great. How about we begin with you then.

Peggo: Without question, one of the most difficult challenges has been welcoming caregivers into our home to help me with Jim’s daily care. I resisted, partly because I didn’t think they were necessary and partly because it puts me on edge to have strangers around. I feel like I have to be ‘on’ all the time, either as a host or supervisor.

It’s taken some time but now I realize how much freedom and autonomy it gives Jim to have a dedicated assistant.

Nurse: I totally get it, and it seems like a win-win. Jimbob, how about you?

Jimbob: For me it comes down to patience. A lot of patience. And perseverance. My ability to do things for myself continues to slip away, and I have learned, over and over, that it’s better to put my energy into figuring out how to adapt. Then we can just get on with it.

I think I used to adapt by just trying harder. Adapting without a fight seemed like giving in. Nowadays adapting is what keeps me in the game. 

I may not be able to hit the fastballs anymore, so I just wait for the curve balls and hope for a base hit.

Jimbob tilts his head and offers a wink for punctuation.

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None of these challenges is unique to me. The particulars are universal to the ALS community. The generalities apply to all who are aging. Over the past two years I have witnessed many in the ALS  community face show-stopping limitations with grace and dignity. Their intentional choice to step-in and adapt is a decision to move forward with living. Any progress is hard won and demonstrates human flourishing.

Adaptability in the context of ALS might be passed over as nothing more than what it takes to survive the stark reality of progressive decline. This is why the ALS-TLS could be used to begin a worthwhile conversation. The post-traumatic growth which is embedded in any family’s effort to adapt to life with ALS is uncelebrated unless acknowledged. A profound opportunity to build hope is lost unless someone is curious and takes the time to listen to the stories about how we go on living, moving forward, and making progress.

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My goal is to write about each of the 12 domains beginning with ADAPTABILITY. Stay tuned for more!