The Fall That Brought Us Down to Earth

I have never been a fan of roller coasters. I learned early on that I like to keep my feet firmly planted on solid ground. Growing up in Pennsylvania, I recall many field trips to Hersheypark. Even in my teenage years, I much preferred its tilt-a-whirl or bumper cars to the roller coasters. Meanwhile, most other teenagers were lining up for their “I survived the sooperdooperLooper” T-shirts.

Our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) almost three years ago now. Yet I am only beginning to fully understand the roller coaster that comes with caring for someone with the syndrome.

Recently, Grace’s LEMS symptoms have become manageable with the right treatment and medication. At 17, she has made huge strides in her ability to go to school, get a job, and learn to drive. Just last week I wrote about a long overdue beach vacation that I thought would never happen because of Grace’s LEMS.

The night after I wrote that column, we took the kids to an upscale restaurant on the water as a finale to our trip. Earlier that day, we had such a fun time at the beach. Grace was full of energy, and she was able to spend hours on the beach in the warm sun. As the sun set, we got dressed up and enjoyed steaks with lots of laughter around the dinner table.

We planned to cap off our night with a trip to an ice cream shop. Our family is all about ice cream, and we had looked forward to this all week. The mood was lighthearted and Grace’s confidence was high, having realized she was able to do so much in one day without becoming overly tired.

As we walked the boardwalk path to the ice cream store, Grace’s foot caught on one of the loose boards, making her fall face first at the door of the store. Grace tends to shuffle her feet when she walks, which makes her susceptible to falls. Her legs feel as if they have weights attached to them due to proximal muscle weakness, a common symptom of LEMS. The fall happened so fast that neither her dad nor I was able to catch her. A crowd of people surrounded us as we rushed to scoop her up.

We stood in a circle surrounding Grace, not sure what to do next. The fall had scared her, although she was not physically hurt. She and our younger daughter both had tears streaming down their faces. We were all shaken. How quickly the rug had been pulled out from under our feet.

As we walked away from the ice cream store empty-handed, I found myself angry. Angry at LEMS for having scarred our vacation in this way. Angry that Grace has been burdened with this diagnosis that I want so desperately to take from her. My desire is to protect Grace from these negative experiences, but I feel helpless to do it. I was so frustrated that what had been such a great week had been marred by this fall.

After we got back to our hotel room, we attempted to salvage the night. Cups of hotel ice cream in hand, we reminded Grace of all the strides she has made in spite of her LEMS. We reiterated to her and our younger daughter that we are a family that may fall, but we will get up again with one another’s help. We will brush off our knees and elbows and keep going.

Grace’s fall does not negate all the progress she has made since being diagnosed with LEMS. Nor does it diminish the fantastic week we had at the beach. Yes, it is a reminder of our reality living with LEMS. Yes, it is discouraging. But most importantly, it was an excellent reminder that she is surrounded by people who will pick her up when she falls.

I tentatively accept the roller-coaster ride that is now our life with LEMS. I pray for more good days than bad and look to the future with hopes of more treatments and one day a cure.

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.