Going to the mall, and other activities I thought we’d lost forever
We're seeing improvements after the dark, fearful days of a LEMS diagnosis
Most of us have vivid memories of a day that changed the trajectory of our lives — that point on the calendar separating the before from the after.
Some of those days hold the best of memories, such as a wedding or the birth of a child. Others hold darker memories: the death of a loved one, the loss of a job, the failure of a relationship.
For me, that point on the calendar was the day my daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS). My life then split down the middle: before Grace got sick, and after Grace got sick.
I thought our lives would never look the same. I grieved for what we’d lost and feared the struggle Grace now faced. We watched activities slip from our lives that I thought we’d never get back.
Exploring the mall
I’ve always enjoyed spending time with each of my children individually. Often, I’d give my kids a few options for us to do together on a special outing, just the two of us. Inevitably, Grace would choose going out for lunch followed by window shopping at the mall. She always loved finding quirky stores where she could linger and study people, so the mall was an intriguing place for her.
When LEMS took over, however, the mall became one big problem. Everything associated with it became a hurdle: parking was too far away, walking around the massive structure was exhausting, and the crowds made Grace worry that she’d be knocked over.
Helping with grocery shopping
When Grace started showing symptoms of LEMS, she was just getting to an age of greater independence. She’d often run into the store to grab a gallon of milk or a bunch of bananas for me. She loved using my credit card on her own to pay for the purchases.
Other times, she enjoyed helping me with my grocery shopping. She’s meticulous with details, loves a good checklist, and is inclined to help others. We enjoyed our time together as we walked up and down the aisles, contemplating meal ideas and checking things off my list.
When Grace was diagnosed, the grocery store became one more thing that zapped her energy. It expended her limited reserves unnecessarily, so I began to go alone.
Going to the gym
Staying in shape was always more than a matter of health for my family; my husband’s job depended on it. He was a Navy sailor for 23 years. We often incorporated exercise into our family outings, not only to help him stay in shape, but also to enjoy time together in the outdoors.
But when Grace got sick, we had to change the nature of those family outings. Long bike rides and lazy days swimming at the pool became impossible, as Grace couldn’t do them. Carrying on without her just wasn’t an option.
I grieved the loss of these activities. I lamented her having to give up sports and social activities that were too physically taxing. These losses left me downright sad and even depressed.
The hope of tomorrow
When this LEMS journey began, I didn’t know that many aspects of Grace’s life would improve with treatment. Today, almost four years after her diagnosis, we’ve recaptured many activities she’d lost. They may look a bit different or be shorter in duration, but she’s able to do them.
In fact, Grace now works at a grocery store while going to school. I often find myself at the mall on a Friday night, trailing her into her favorite shops. In the past year, our family has even hiked the mountains of Georgia and spent days enjoying our neighborhood pool. Life is good.
If I could go back to this journey’s beginning, I’d tell myself to hold on, things will get better. Grace will recapture many of her lost loves. All is not lost.
Are there activities you didn’t think you’d do again but can do today? 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.