Living Purposefully in Our New Normal

Learning to live with a chronic illness takes some getting used to, and oftentimes adjustments are needed to help our loved ones live the life they envisioned for themselves. What came easily before doesn’t always come easily now.  

When our daughter Grace got sick as a young teenager, everything stopped. She became unable to do many of the things we took for granted. And at the time, our family had moved out of state, so we had a natural break from all activities. But we did not realize she would be unable to return to many of the activities she had enjoyed before her illness.  

We had to stop her piano lessons because her energy was too low and her fingers tired easily. Our family walks with the dog stopped, too, because she couldn’t walk farther than the end of our driveway. Even her sketching and drawing, which she loved to do in her free time, stopped. Classroom instruction was nearly impossible without my assistance, and reading out loud became laborious for her, as she stumbled over her words and gagged.  

Grace’s artwork. (Courtesy of Lori Dunham)

Grace became discouraged and expressed hopelessness about ever being able to participate again in activities she loved and that filled her soul with joy and accomplishment.  

Once we were able to get her Lambert-Eaton myasthenic syndrome (LEMS) under control with the right treatment plan, I recognized that we could not allow Grace to live defeated, walking through life only seeing what she could no longer do. It was our job to help her see beyond what she was unable to do and focus on the many things she was more than capable of doing. 

We all know our kids’ strengths and weaknesses, but this time, we purposely began searching out her true gifts, talents, and abilities. We spoke about them, not only to acknowledge the gifts and talents and to encourage them, but also to help her see and recognize them in her own life. 

We purposefully read inspiring stories about others who had faced and overcome physical challenges. We connected her with others in the LEMS community, and discussed all that they were accomplishing in their lives. Purposefully and with intention, we poured into her positivity about future endeavors, schooling, and a career.  

Our life looks different than it did two years ago, but the overarching message I want Grace to hear is that she can still accomplish all she sets out to do. It may take some accommodations and more time than before, but she, and every one of us, is a world-changer.

We have but one life to live. Let us all use our time on Earth for the good of those around us, to encourage and to inspire, and to bring beauty and kindness to the world. To live purposefully into the fullness of all that this life offers. 

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Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.