How to Embrace Life When It Turns Out Different Than We Expect
What to do when a LEMS diagnosis leads you on a different path
If there was a motto to be found among the Lambert-Eaton myasthenic community, it would be this: “When life gives you LEMons, make LEMonade.” This refrain encourages us to take the bitter parts of life and make something sweet out of it.
The bitterness of a rare disease diagnosis is hard to swallow. Once we process what that diagnosis means for our lives, we can choose to linger in the acridity of it all, or we can look toward the glimpses of goodness still present in our lives.
For those of us who have been touched by Lambert-Eaton myasthenic syndrome (LEMS), we understand all too well that life doesn’t always turn out the way we thought it would. Oftentimes, LEMS alters career paths. It hinders our hobbies. For some, it changes the trajectory of our relationships and future goals.
When our daughter Grace was diagnosed with LEMS at age 14, we had no idea what her future would look like through the lens of a rare disease diagnosis. We knew that it was life-altering, but what did it mean, exactly? What would her future life look like? Would LEMS hinder her progress through high school and into adulthood?
These were questions that bombarded my every waking moment. Over time, I learned that the trajectory of Grace’s life would most likely look different because of her LEMS diagnosis. I have come to the resolution that this is not a bad thing. It’s just different.
Adapting to the learning curve
There is a learning curve when it comes to accepting unmet expectations in life. It was imperative that I shift my expectations and embrace the atypical parts of her story. I needed to do this to help Grace successfully move forward into adulthood.
For us, that means hitting milestones a bit later than most her age. Driving will happen, but it will take more time than it does for others. High school graduation will most likely be delayed by a year. That is because Grace lost almost a year of schooling when she first developed LEMS symptoms during her freshman year of high school.
Different is not bad, it’s simply not ordinary. I’ve had to fight against society’s view about when teenagers should do certain things and accept that our path is unique.
Now, I am thankful for another year with our daughter under our roof. I make the most of the opportunity I have to drive her from place to place. Soon enough, she will be out on her own and I will miss these moments. Today, I embrace that which is different, knowing this is a season of life to savor.
In what ways does your life look different than you thought it would because of a LEMS diagnosis? 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.
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Comments
Karyn Hayes
When my LEMS symptoms first started in 2001, even after a 3 competent and well respected Neurologist, no one could tell me what was causing the muscle weakness, severe balance deficits, lethargy, and other puzzling symptoms. My symptoms mimicked ALS to a "T". None of the tests to rule out a variety of maladies came back positive. I had many falls due to my proprioception malfunctioning, and I would not experience the sense of falling until I was on my way down. Not always a good thing. After a face plant on our concrete driveway, cracked ribs, stitches over an eyebrow, some broken metatarsal bones in one foot, with cracked ribs, fractured pelvic ring, I decided I needed to be realistic about what I was physically able to do, safely. I had to make a decision...do I keep chasing a cause, or learn how to cope, adjust to how each symptom affected me. I was finalized diagnosed by an amazing Neurologist at Mayo in 2013 who was familiar with the disorder.
The LEMS experience is life altering, and more difficult and painful for some. My heart hurts for those folks, and for those who have symptoms but are still without a diagnosis, or treatment. For me, I realized I need to "pick-my-battles". Realistically deciding what activities were important to me, and which ones would be set aside...at least for a time. I have always been physically active, and my falls were a huge learning curve. As Lori mentioned, I viewed the changes I needed to make as a different way of continuing to be as active as possible. I gave up grocery shopping and my husband has become an expert...AND...ordering online is awesome for some items. House work went by the wayside (yay!!!), but our home was still okay, but the way I would prefer. Walking and swimming for pleasure and exercise also went by the wayside, and I do miss both of them. A motorized scooter for work was tremendous blessing provided by some sweet angel in from our church family.
After living with LEMS for 21 years I have learned so much on how individuals with functional limitations struggle with 24 hrs a day. Their limitations may not be from LEMS, and may be, or include pain that cannot be resolved. There are so many other conditions that can limit someone's strength, balance, endurance. When able-bodied folks see those who aren't...maybe they are walking more slowly than others, or using a cane, a walker, or a wheelchair, they usually don't stop to realize how difficult it may have been for someone to be able to be out with others. My LEMS has taught me how the "behind the scenes" in their lives (and mine), can be exhausting. Simple things, getting dressed, keeping house, cooking, toileting, bathing, and so much more. As a Type AAA person who "walked at the speed of light" had a lot to learn about the fragileness of life and functional abilities. I learned that many folks see someone using a device for mobility, or vision with a "poor thing". I had numerous friends and staff that voiced how sorry they were for me. I was genuinely puzzled. I would respond that my legs weren't working well, but "I" am still me. I am afraid that their response is pretty much a typical response. I did not know I needed the lessons LEMS brings to us, but I did.
Lori Dunham
Your testimony of living with LEMS is very inspiring. Your attitude is to be admired.