The philosophy of "living for moments" is fundamental for explaining how I have lived so long with ALS, not just existed. It also is especially meaningful since this past month, May 2013, marks a major milestone moment in my life or the life of anyone who is a parent — seeing a child graduate from high school.
Not only did I see my oldest daughter — who was not even conceived or a glimmer in my eye as my Granny B would say when I was diagnosed with ALS — graduate, but I saw her give the valedictorian address for her class of over 300!
No dad could ever be prouder or more aware of the significance of his daughter’s incredible academic achievement than I was in that moment because I was not supposed to be there and, quite frankly, my daughter shouldn’t have been there either, had I listened to the doctor’s advice to go home and plan my funeral after learning I had ALS.
Wow, I just read the enormity of that last statement: The world would have been denied what is shaping up to be the amazing life of my daughter, who is now a magnificent young woman. And that’s not to mention her younger sisters, who are becoming pretty amazing in their own right. The instant that I decided to ignore conventional wisdom created a “butterfly effect” of which I am just starting to see the real visual effects. I believe much more is yet unseen since my daughters are just beginning to impact the world.
Oftentimes we don’t know or realize the impact our life has on others. I can only hope that my existence has made a positive impact on the world. But I absolutely know my life has made a difference because of the amazing people my daughters are becoming.
Forgive my little tangent as a proud dad, but I believe the substance behind my larger point of “living for moments” is we do not always realize the true purpose of our lives within the narrow scope of the hardships ALS creates in our lives, particularly during the few years after diagnosis when ALS uproots and destroys every expectation, vision and dream we had for our lives.
This is why I believe it is fundamental for people with ALS (or anyone with problems in their lives for that matter) to live for moments instead of becoming overwhelmed by the colossal issues which threaten to overtake and swallow their life.
By shifting your focus to living for moments — both big life moments and small ones like spending time with family or friends, or just smiling as you listen to your favorite song — what you are doing is taking your attention away from what you are losing because of ALS and putting it back on what makes life worth living in the first place: love and happiness.
Am I saying don’t deal with the issues ALS brings into your life? No, you have to deal with the issues at hand and plan for issues which certainly will come; otherwise, the effects of ALS will overwhelm the remainder of your life. However, I have seen too many times where ALS becomes such a focus for people with ALS — either what they have already lost and losses to come, or chasing the miracle treatment — that they quit living and ultimately being happy.
It is quite easy to stop living while getting caught in the muck and darkness of your problems, especially when they are as serious as having ALS. It was not until I decided to quit wallowing in my fate and take back my life, my happiness, that I started living again. At first as a single man, this meant getting engaged, married and having a child, which are incredibly big life moments, as well as going to Rams games or just having my daughter sit on my lap and laugh. Somewhere along the way, I stopped living for moments created by or with the help of someone else, and rather started creating my own moments and forging my own destiny by having goals and dreams again, living for the moment. I now find myself nearly 20 years since my diagnosis living a happy and fulfilling life.
Be well and happy!
About the Author
Jeff Lester, 46, and his wife, Lisa, live in Lebanon, Mo., with their three daughters, all born after his ALS diagnosis in October 1993. In 2011, he earned an M.S. in finance and an M.B.A. from the University of Michigan, Dearborn. A former Eagle Scout, Jeff (“ragingbear”) was the founder and longtime moderator of MDA’s “Living with ALS” chat. He has written about life with ALS for MDA’s Quest magazine and the MDA/ALS Newsmagazine, and was the recipient of Missouri’s MDA Personal Achievement Award in 2006. From 2002 to 2007, Jeff served as online editor of “World ALS Research News” for the ALS Therapy Development Institute (ALS TDI).