Finding Ways to Embrace Inevitable Change

“There are far, far better things ahead than anything we leave behind.” – C. S. Lewis

As the wife of an active-duty military member for 23 years, I have known my share of change. Usually, our family embraced a new duty station with gusto. We often planted quickly and firmly into our new surroundings — not because it was easy, but because it was necessary.

For much of my life, change was exciting and brought a welcome adventure.

But when our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), it seemed like our lives stopped, and I became overwhelmed at the prospect of change with LEMS. Of course, life in the Navy did not stop. We moved twice while Grace was being diagnosed. Our son graduated college and got married. Life changed and kept moving. However, my usual joy and excitement was replaced with fear.

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Change with LEMS felt scary. It seemed unnecessarily complicated, and I didn’t have the energy for it. How would we find new doctors? Would they be knowledgeable about the condition? How long would we have to wait to see new doctors? Would our home be accessible to Grace, given her physical limitations? These questions kept me up late at night.

During this time, many wonderful people stood beside me and equipped me with the tools I needed to embrace impending change. First, I learned to simply do the next little thing. I began to take things day by day, sometimes hour by hour. I did not need to have all of the answers before moving forward. Oftentimes, change results from a series of small decisions that happen over time.

Second, I learned to be patient with myself and others. Some days, I could spend hours on the phone finding new doctors and stressing the necessity of an appointment. Other days, I gave myself permission to take time off from managing the needs that change with LEMS had brought.

Third, I learned to ask for help. It is an unwritten rule in military communities that asking for help is a sign of weakness. As a young military spouse, I learned that military wives should be competent and independent so that our husbands can do their jobs without worrying about our well-being. Because of this mentality, asking for help is very difficult for me. But as I stared into the face of change again, I knew I needed to learn to reach for this lifeline.

And so, I’m slowly welcoming change back into my life. It’s not quite as exciting as it once was. But I acknowledge that it’s not quite as overwhelming, either.

It does get easier, walking this road of rare disease.

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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 syndrome.