The surprise revelation of how LEMS brings my daughter pride
A flag's arrival helped me appreciate that her disease has enriched her life
Some memories are indelibly scored into the fabric of our being. For me, one such memory is the first time I pushed my daughter Grace in a wheelchair.
She wasn’t yet diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at the time, but her symptoms had left her incapacitated. She had suffered for months with muscle weakness, multiple falls, and exhaustion.
Grace’s relief was palpable as she sat in the wheelchair that first time. Although I knew she needed the help, I found it traumatizing to push my once healthy and active daughter through the halls of the children’s hospital. I hid behind her as we maneuvered the cold halls, tears flowing down my cheeks. I’d never thought a disability would be part of Grace’s story. She was meant to be whole and healthy with no obstacles in her way.
When we parents grow our families, we all wish for the same thing: happy and healthy children. But suddenly, my most basic desires were stripped from me as Grace wasted away before our eyes. But while I fought the idea that Grace was disabled, she embraced it.
Grace was thrilled to qualify for an accessible parking permit. She embraced accommodations made for her at work and school. To me, these were ugly reminders of what LEMS had stolen from her. But to Grace, they were relief.
Pride with disabilities
We’re now near the end of Disability Pride Month, a celebration I didn’t know existed until recently. It’s recognized every July to honor the history, achievements, and struggles of the disability community. The month also coincides with the 1990 enactment of the Americans with Disabilities Act, the very legislation that gives Grace the rights she needs to succeed while living with LEMS.
One day, an Amazon package that I hadn’t ordered was delivered to our front door. It turned out that Grace had searched for and found a Disability Pride flag. She was so excited to find this flag that she ordered it and promptly hung it on her bedroom wall. That’s when I realized that Grace identified with this flag, and that her disability had enriched her life. She’s proud of who she is, partly because of how LEMS has shaped her.
Through exposure to the LEMS community, I’ve learned to celebrate my daughter’s participation in such a unique group. Those who wake each day with LEMS and similar diseases are warriors. Their mental fortitude is inspiring. They’re strong and persistent. The support they offer one another is a rare jewel in this world. They fight harder than most to tackle what the rest of us take for granted.
It’s taken time, but I no longer stumble over the word “disability.” It’s become a word that demands my respect. Those who are like my daughter, living with LEMS, are some of the strongest people I know.
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 myasthenic syndrome.
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