With LEMS, Activities Require a Cost-benefit Analysis
Like many others, our family is returning to a normal routine after enjoying an increase in activities, family events, and time with friends for the Easter holiday. I love the extra family time and the break from work. We do fun day trips we don’t normally have time to do.
However, for those living with Lambert-Eaton myasthenic syndrome (LEMS), like our 17-year-old daughter, Grace, a time will come after the fun and special activities when she will pay for the extra energy expended. The lack of sleep will catch up to her. She will need a day, or two or three, to recuperate and regain her strength.
I have found that LEMS requires an ongoing cost-benefit analysis. We are constantly weighing the benefits against the cost of each activity Grace participates in.
Last week, Grace decided to go to the beach in fairly warm temperatures for an all-day event with her best friend. Most people with LEMS would agree that extended periods of time in excessive heat will bring on additional muscle weakness. Still, she chose to go. Grace also weighed the cost of staying up later than normal to play games with our houseguests, which would no doubt leave her exhausted the following day. She chose to attend a bowling party knowing that the next day her body would be sore all over.
Thankfully, she is able to say yes to these activities. Two years ago, she didn’t even have that option. Her body just refused to cooperate. With the right treatment, she has been able to gain a semblance of normalcy in her routine and activities. However, even with treatment, the extra activity still comes with a cost Grace will have to pay days after the special events.
We not only deal with limited energy, but also the emotional aspects of how LEMS has changed Grace’s life. This was magnified over the Easter holiday when Grace’s best friend, who is also 17, visited. The girls have so much in common and enjoy each other’s company tremendously, so the visit was highly anticipated. But while her family made side trips to visit local colleges, Grace fought the disappointments of what LEMS has delayed in her own life.
Grace lost almost a year of schooling when she first got sick her freshman year of high school. She most likely won’t graduate with her age group, as she’ll need to complete several lingering credits before moving on to college. She was reminded of this fact during her best friend’s visit.
Grace knows her life doesn’t look like her best friends’ lives. She carries a load most high school students never have to carry. Therefore, I remind myself that her story is her own. She will get to where she needs to be; it may just take her a bit longer.
The arbitrary timeline we all live by feels like it’s strangling me. So I cut away the expectations society places upon our daughter. I welcome the idea that she is merely journeying on a road less traveled. Once I grasp this idea as a viable path for Grace, I am able to help her see it that way as well.
So we will continue to walk alongside our daughter as she weighs the costs and benefits placed upon her shoulders by LEMS. She is old enough to decide what her body can and cannot handle. We walk through the emotions that come with knowing how LEMS has changed or delayed the trajectory of her life. But most importantly, we help her see the benefits in what she is able to do and the bright future she has to look forward to.
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.