Learning to slow down was key to managing our daughter’s LEMS
With chronic illness, punctuality isn't always a primary concern — or possible
My childhood memories hold a lot of special moments: our first family trip to Disney World, summers at the Jersey Shore, fun family celebrations. But mostly, I remember the mundane parts of family life. In those moments, we learned valuable life skills.
Some of my earliest memories are of my siblings and me racing to the car so that we wouldn’t make our dad late. As a perpetual early bird, Dad would yell “Five minutes to takeoff!” to ensure that we’d be ready on time. Our family believed that if you aren’t five minutes early, you’re late.
My dad’s punctuality was passed on to his children. It is a rare occasion when any of us are late. However, this hasn’t been adopted by all of my children.
A different world with LEMS
Our middle daughter, Grace, has lived by a different clock since she was a little girl. From the time she could walk, Grace would meander down the path instead of run. She would stop and smell the flowers, notice the shadows dancing around her, and soak in the sun.
This added a much-needed element to our home. She forced the rest of us to slow down and appreciate the beauty around us.
However, a whole new dimension was added when Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 15. As a teenager, Grace’s body would no longer cooperate with her. She was forced to slow down even when she didn’t want to. Nearly every aspect of her life has been affected by LEMS. It takes her longer to get out of bed in the morning. Showering and doing her hair is harder. Even schoolwork takes longer because of LEMS.
Grace’s illness forced me to stop rushing, too. I learned to walk more slowly. We began to build in extra time so that we’d arrive on time for things. I’ve even learned not to stress when we show up a few minutes late.
Over the years, we’ve been intentional in teaching Grace age-appropriate time-management skills. But after the onset of LEMS, we now tailor those skills to include tools to help Grace win the battle against this chronic illness.
Managing Grace’s time is more important than ever. In order for her to succeed in all she wants to accomplish in life, Grace is learning how to prioritize the most important parts of her day. She weighs the pros and cons of activities and what they will cost her. She is learning to build a margin of time into her day not only for rest, but also just to get from point A to point B.
I am proud of how Grace fights LEMS in her life. She is determined to curb its effects on her everyday life and activities.
What time management techniques have you implemented to accommodate LEMS? Please share in the comments below.
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 syndrome.