Bumps In The Road

Let’s start this morning with a joke.

A man was stranded in the desert, dying of thirst. He stumbled upon a small stand run by an old merchant.

“Water… I need water…” the man gasped.

“Sorry,” the merchant said as he shook his head, “I only sell ties.”

“Are you kidding me?” the man groaned as he kept walking.

Hours later, barely alive, he reached a luxurious restaurant in the middle of the desert. A waiter stood at the door.

“Please…. water…” the man begged.

The waiter looked over at him and said, “Sir, you can’t come in without a tie.”

Have you ever been totally focused on something only to run into something unexpected that shifted your entire focus? That’s what happens to many people when Myasthenia Gravis symptoms appear for the first time.

You’re young, you’re talented, you’re driven. You have a family, a mortgage and a car payment. You have a good job, but you know you have it in you to get promoted. You work hard. You give it everything you’ve got. You’re in your element and you’re thriving. You’re going somewhere.

Suddenly you start having these bouts where you have difficulty swallowing. It doesn’t happen all the time, but often enough that it’s concerning. It doesn’t matter if it’s food or water, you seem to choke on both. In fact, water seems to be even worse. Things just seem to go down the wrong pipe. It’s embarrassing, so much so, that you refrain from eating or drinking in front of anyone for fear they’ll start wondering what’s wrong with you.

Then your eyelids start drooping. You can’t control it. Sometimes they droop and sometimes they’re just fine. People start wondering if you’re not getting enough sleep. You discover that extra energy you once had to go the extra mile is no longer there. In fact, you’re tired, almost worn out at times.

You go to the doctor, and of course none of the symptoms are showing. It’s like taking your car to a mechanic because you have a squeak. You try to explain to your doctor what’s been happening and they just kind of look at you like you’re crazy. You seem perfectly fine now. You try another doctor. The same thing happens. Sooner or later, you start wondering if you actually are crazy.

You finally go to a neurologist and learn you have Myasthenia Gravis. All of a sudden, your life changes. Things that used to be so important like promotions and raises aren’t nearly as important anymore. Now you’re focused on your health, not choking, the weakness in your legs, the chronic fatigue.

What happened to your life? Just like the guy in the desert, you need water (e.g. your job, promotions, raises), but the rug keeps getting pulled out from underneath you. Everywhere you turn, it now seems like there’s some obstacle preventing you from getting ahead. And now this.

That’s one way to look at MG. Another way, and the way I prefer, is MG is a bump in the road. If I have a good doctor, take my medicines as directed, eat right, exercise, get plenty of sleep and rest when I feel I need to, I can still do my job, I can still get promotions, I can still earn those raises. It’s just a little tougher now, but not impossible.

The key is not giving up. I went through all of that. I learned when MG gets in your way, don’t let it take over your life. Work through it, in spite of it. Go after your dreams, focus on what’s important in your laugh, and do it TODAY.

Yes, Myasthenia Gravis is a progressive disease and we have no idea how fast it will progress or what tomorrow will look like. For that reason alone, we need to seize today. You only sell ties; I’ll keep walking. I can’t get into your restaurant; I’ll keep walking. I will not accept defeat. I will not give in. I will persevere for as long as I can and I will make something out of my life.

That doesn’t mean it’s going to be easy, but anything worthwhile is rarely easy. It means when I reach my dream, in spite of MG, it’s going to be all that much more glorious.

Don’t give up on your dreams; go after them. Someday you may no longer be able to do so, but you can today. This MG thing, it’s a bump in the road. They say that when a person reaches the end of their life, they rarely regret the things they’ve done; they regret the things they wanted to do, but never did.

Don’t let bumps in the road stall your road trip.