Many people with Lambert-Eaton myasthenic syndrome (LEMS) wait an extremely long time for a diagnosis. Our family waited nine months, a relatively short time compared with others in the LEMS community.
As we waited for a diagnosis to be confirmed for our 16-year-old daughter Grace, a fog of uncertainty hung over our home. We had questions no one could answer and fears that couldn’t be quelled. Abruptly, our future didn’t look the way we had imagined. We tried to peer through that fog, but we couldn’t see a path forward.
Each day, Grace’s illness presented us with new symptoms and diminished physical capacity, and we had no idea how to move forward.
Our family faced an unknown assailant and didn’t know where the next attack would come from.
There is a phenomenon known as the fog of war. In 1896, Sir Lonsdale Augustus Hale defined the term as “the state of ignorance in which commanders frequently find themselves as regards the real strength and position, not only of their foes, but also of their friends.”
The fog of war causes one to question their own capabilities. It makes it difficult to see the enemy’s patterns. Surroundings lack clarity, but decisions still must be made.
We were entering the battlefield to fight for our daughter’s health, and the fog of war threatened to smother us. How would LEMS affect her schooling, career, family, and health?
We had to make decisions without all of the information being available to us. What school should we enroll her in? Could she attend a public high school five days a week, or should we home-school? Would she be able to drive? Could she get a job and someday support herself?
Information was trickling in and constantly changing. These uncertainties kept us from engaging in the battle because we couldn’t see the enemy. One day, doctors suspected she had myasthenia gravis, and the next day, they suspected limb-girdle muscular dystrophy. Finally, it was Lambert-Eaton myasthenic syndrome.
With a correct diagnosis, the fog lifted.
Military leaders know that in order to reduce the fog of war, one must provide intelligence and be able to readjust and act upon new information. Each new piece of intelligence allows us to see a little more of the battle we face.
We began to accumulate a broad experience base in regards to Grace’s health and her disease through online forums, BioNews (the publisher of the Lambert Eaton News site), and the LEMS community. This led us to a wealth of information that was key in our battle.
Now, we are able to make educated decisions about Grace’s future instead of blindly moving forward without any guidance or direction.
With more information and a correct diagnosis, we can adjust our circumstances to achieve the best outcome for Grace.
For those wading through the fog of a health battle, whether it’s your own or a loved one’s, stand firm. The fog will lift with time, information, and a treatment plan. You will find your strengths within the battle.
It is never easy to fight for one’s health, but with the right information and experience, we can win the battle and achieve the most desirable outcome for our loved one.