How I made my own resilience checklist to help me live with ALS

 

Something was missing from the packet of patient information my doctor gave me on the day she told me I had ALS. But I didn’t discover that missing item until 12 months later. Why?

During those initial months, even though I was adapting as best I could — such as transitioning from “stumble walking,” to using a cane, to finally, the combination of pushing a rollator while wearing a pair of ankle-foot orthoses. But I still worried about my ability to cope with symptom progression and other changes.

I opened the packet anew, but what I searched for was simply not there; I saw no quick, easy checklist on how to be resilient while learning how to live with my ALS.

I could have blamed my doctor and spiraled into a mental funk. Instead, it spurred me to begin my quest to explore everything I could about resilience and to create my checklist to share with others.

What happened

Exploring online, I learned that researchers had already identified life areas where, when we ALS patients experience loss, we’re most profoundly emotionally vulnerable. Those life dimensions include social roles, independence, relationships, hobbies, and careers. When faced with loss in any of these areas, ALS patients either succumbed to feelings of hopelessness or had hope and began coping.

That finding is so important, I’ll say it again!

When faced with loss in the areas of: social roles, independence, relationships, hobbies, and careers, ALS patients either succumb to feelings of hopelessness or have hope and begin coping.

ALS is such a physical disease; it forces us to focus exclusively on our physical symptoms – and overlook how it’s impacting the other dimensions of our life.

That was something I noticed happening to patients in my own ALS community. Some were mentally stuck in what I call the ALS waiting room, while others accepted their diagnoses and seemed to effortlessly move on with their lives. They found a way, adopted a personal mission, traveled, joined sporting events, and remained noticeably positive, optimistic, and hopeful.

That brought me closer to understanding resilience as -- the ability to bounce back from adversity, to cope, and return to feeling emotionally balanced.

What I found

However, here’s the thing. There’s no quick method, checklist, podcast, or short video on social media on how to achieve resilience -- especially when ALS is involved.

Because ALS symptom progression, along with other changes, is different for each person. So, our coping strategies should be unique as well. And that means a lot of trial and error.

But here’s the other thing: Even though some of us have never had to test our resilience and others have only tapped into it once in a while, resilience can be learned. The more you use it, you’ll find that coping with adversity and life’s challenges becomes easier to do.

Here are some suggestions that worked for me:

• Challenge the loss or problem by assessing alternative solutions. Think outside the box. Ask others for their input and be adaptable.
• Accept the loss or problem without resigning to it. Change your mindset and remain positive.
• Focus on what can be done to resolve the situation. Plan, allow more time, and be OK with moving slowly or asking for help.
• Retain control, independence, or final decision-making. Empower yourself. Remember that your response is more powerful than your circumstance.
• Rely on supportive relationships. Involve your caregiver, family, friends, and medical team. Reach out to internet groups and forums.
• Proactively use functional and technological assistive devices. Stay current on what’s available, listen to your medical team, and check with your ALS care services coordinator.

My quest to find resilience led to a book, a blog, and my Living Well with ALS column (on ALS News Today)! What I learned, I wanted to share with others who found themselves at the crossroads of hopelessness and hope.

I invite you, your family, and your friends to join me and tap into your own innate resilience. Let’s learn to live well while living with ALS.

Dagmar Munn
ALS and Wellness Blog

Whatever is in me is stronger than what is out there to defeat me.

Carolyn Myss

 

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