Despite Living With An Incurable Disease Pursuing Bliss Despite Living With An Incurable Disease

By Justice Edward L. Chávez (ret.)

About a year ago, the muscles of my left leg were not being innervated, so it atrophied and developed unusual twitching. Why wasn’t the nerve innervating the muscles? Following two full days of nerve conduction studies, neurological exams, a full body MRI and lots of lab work, I was gently and compassionately told by a neurologist that I have an incurable motor neuron disease, amyotrophic lateral sclerosis (ALS), commonly referred to as Lou Gehrig’s disease. ALS is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of a person with ALS averages two to five years from the time of diagnosis. I was familiar with ALS because a first cousin of mine had ALS, became a functional quadriplegic, lost his ability to speak and ultimately died from ALS.

My diagnosis was not welcomed news. I shed tears with my family, vowed to spend more time with them, especially my eight grandchildren, and seemed to have overcome the initial mental trauma of the diagnosis. I had not. I was so devastated that my mind began to signal me that I was already experiencing muscle weakness, I struggled to walk, thought I was losing my ability to swallow, etc. I was looking at life with a bad eye—focusing on the negative. The mind is that powerful if you let it be.

Faith—divine intervention—helped me overcome my mind’s negative outlook on life. At least two Bible passages helped me gain control of my mind, including “The eye is the lamp of the body. So, if your eye is healthy, your whole body will be full of light” (Matthew 6:22) and “When troubles of any kind come your way, consider it an opportunity for great joy” (James 1:2). Rather than focus on ALS and its inevitable consequences, I began to focus on the simple things in life that I enjoy, such as the first sip of coffee in the morning, hearing the first bird chirp in the morning, the beauty of the mountains, sunrises and sunsets and frankly the joy of stepping onto the floor off my bed and realizing that for another day I am going to be able to be independent in my activities of daily living. You get the picture.

What I had also forgotten while my negative mind had completely overtaken me was practicing mindfulness. I downloaded “Practicing Mindfulness: An Introduction to Meditation” by Mark W. Muesse to help me return to the basics of mindfulness; an excellent resource for seeing the world as it is, expressing fundamental kindness, appreciating the joy of giving, embracing our flaws, embracing physical discomfort and even living in the face of death. I practice mindfulness daily no matter what I am doing, walking, consuming, driving, etc.

More importantly, I remembered that life through the eye reflects the attitudes we have toward others. A bad eye is to be self-centered, blind to the needs of others, unwilling to be generous because you are worried you do not have enough. A good eye allows you to focus on the beauty of life—God’s creations—to follow your bliss, to look out for the needs of others and be generous with financial and/or emotional support. When you give much to others, you get much from others. “Give, and you will receive. Your gift will return to you in full pressed down, shaken together to make room for more, running over, and poured into your lap. The amount you give will determine the amount you get back” (Luke 6:38).

Since being diagnosed, I have researched lots about this progressive and incurable disease, and even watched documentaries about the disease, such as “Gleason.” I have met other members of the New Mexico ALS community and learned about their challenges with this devastating disease and the enormous financial strain it puts on them and their loved ones. Yet, invariably they do their best to keep a positive outlook on life, appreciating the small things in life that many take for granted, like getting up under their own power, walking, talking, swallowing, breathing.

Faith and looking at life with a good eye caused me to form an ALS team I called “Follow Your Bliss” with the motto encouraging everyone to “smile often”. I formed the team to raise money to provide resources and services to those in the New Mexico ALS community, support advocacy for government funding of research, and raise awareness about the urgency to find treatments and a cure. I chose the team’s name “Follow your Bliss” because even with the physical and mental challenges that come with ALS, we still can find things that make us happy and keep us at peace. The team’s name is also a reminder to others to do what makes them happy now, and not to wait for another day, week, month, year...because tomorrow may never come.

The team, about two hundred strong, raised a recordbreaking amount of money during the 2022 ALS walk. It was a blissful day for me surrounded by family and friends who were there looking out for the needs of others. We had turned a negative—ALS diagnosis—into a positive. As a result of the team’s generosity, people in the ALS community will get resources not covered by insurance, which they need but otherwise cannot afford.

As much as I would like to talk my doctors out of the diagnosis, I obviously still have ALS. My diaphragm is the prime target of ALS, which is unusual but not unheard of. While I remain independent in my activities of daily living, I am losing my ability to breathe. I am not saying that it is easy, or that it will always be easy, but with God’s grace, I do not have any fears or sorrows, and I am living a calm and peaceful life.

Keep the faith, follow your bliss, look at life with a good eye, and smile often. “A glad heart makes a happy face” (Proverb 15:13). ■

Justice Edward L. Chávez (ret.), who first began practicing law in 1981, was sworn into the New Mexico Supreme Court in 2003. From 2007 – 2010, he served as Chief Justice and later retired from his position in 2018, after which he began volunteer work for all three branches of government and private not-for-profit organizations. Prior to serving as a Justice, he held positions as Chairman of the UNM Health Center, President of the Legal Aid Society of Albuquerque and Chairman of the Disciplinary Board.