When I published my first blog post for “The Battle Within,” I was thrilled to receive a comment from a woman in Dallas named Betty Ann Lasley. Not only did Betty Ann become a fan of my blog, she became a very dear friend of mine.
At my first Lambert-Eaton myasthenic syndrome (LEMS) patient meetup in Kansas City, Missouri, I was surprised to learn that the beautiful woman across the table praising my writing was Betty Ann.
We’ve since attended multiple rare disease events together. She is beautiful, kind, and the the life of the party. She also is the one person in my life to say: “Keep writing, Dawn. You have a gift.”
Betty Ann has many gifts as well. No matter the challenge, she radiates positivity. She is the reason I continued with my blog, which led to writing my column, ‘LEMme Tell Ya.’
I recently asked Betty Ann if she would share some words of wisdom for other LEMS and chronic disease patients. Here is what she sent me, in her own words.
MY LEMS JOURNEY WITH GOOD HUMOR by Betty Ann Lasley
There are times when I think I’m a genius and as I live alone there’s no one to dispute me. It all began two weeks ago. Someone said Christmas is almost here – oh, no, time to put up the tree and all the “stuff” now in boxes on high shelves in the garage. But wait a minute, as a LEMS patient to lift and bend and get on ladders is next to impossible; what shall I do? I do love Christmas and wouldn’t want to disappoint my grandchildren by not having all the festivities. I will repeat – I think I’m a genius. It dawned on me I have five grandchildren ages 13 – 17. Aha, perfect ages for a festive tree trimming party and brunch. So, one Sunday morning not too long ago, we all ate quiche, set up trees and “stuff”, decorated and had a wonderful meeting of the cousins while I sat in my favorite chair, directed the entourage and sipped coffee! Genius!
The reason for recounting this story to all of you suffering from LEMS is “where there is a will there is way” as my mother used to love to say. Her other idiom was “don’t cry over spilled milk”! Very wise – my mother! We are all suffering from this very debilitating rare disease which has come to us from who knows where and keeps us wondering what will happen next. It does seem at times that we have no control. I disagree! We can smile and say “onward” and work towards “learning to live with LEMS” in good humor and good heart.
I grew up as a modern dancer and taught it for years. I worked as a VP of sales and marketing for a Belgium Company traveling the world when at around 65, I began to experience the symptoms of LEMS; it changed my life. Diagnosis after diagnosis came up with all sorts of interesting things. I forged ahead until I found the “wonder doctor” who knew a “thing or two”. Life has certainly changed and although the treatments are scarce and minimal, I have forged ahead. Now, it is almost impossible to travel the world and I must consider where there are steps and appropriate seating, but I smile and keep moving – no one wants to hear you complain. I still teach at a local college and with my walker in hand I teach those coeds that a handicap doesn’t get you down. I explain about rare diseases and hopefully I have inspired one or two to think about such things. I try to work with Global Genes and the LEMS community to keep the interest up and as well as hope in finding a cure and more treatments.
I believe in “the power of positive thinking” as per Norman Vincent Peale. He tells us that “You have a choice everyday… You can choose every morning whether you will be depressed and miserable, or whether you will be happy.” Psychologists have agreed that they “believe that love, support, and positive belief go far beyond healing and can actually manifest cure – and there’s lots of science to prove it.” (Psychology Today)
My message to you this day is: Happy Holidays everyone – enjoy each day and remember a smile and good thoughts can ease stress, pain, and bring a kiss or two from someone you love. Ciao!
Parts of this post were first published in the Lambert-Eaton News.