After 24 years, I never let MG keep me from living fully, doing what I love

“You can’t do anything about the length of your life, but you can do something about its width and depth.”  — Anonymous

These are wise words from an anonymous writer. Following these words and disregarding my myasthenia gravis (MG)-related restrictions, I decided to join my family on a trip to Italy this September.

There is a famous Bible verse that says, “The spirit is willing, but the flesh is weak.” (Matthew 26:41) That often holds true in MG.

Nevertheless, I try to live by the slogan, “I have MG, it does not have me.” There are a couple of reasons why MGers ought to, as Nike says, “Just do it.”

First, life is short. As MG patients, we know that all too well. When I have an opportunity to do something that brings me joy, I do not hesitate. I go for it. Every day can bring something new and beautiful.

As you can see in my photo above, I am standing in front of the Colosseum in Rome. An ancient structure, it was built to entertain Roman citizens, and it still stands today, mostly to attract tourists, who, it seems, entertain Roman citizens.

This was my first outing after the flight, and it sapped much of the energy I had saved for the trip. The flight itself was tiring, and arriving in Rome was somewhat stressful, as the Roman way to handle airline passengers who are mobility-hampered is to station them in a separate room away from their mobility devices and  travel companions.

Hey, I know miracles could happen — we could always get up and walk out on our own! — but after 24 years, this has not yet happened. Luckily, my family rescued me at baggage claim.

But that adventure — along with our stroll through the sun to see the crumbling Coliseum — removed most of what energy I had left for the day.

Nevertheless, I continued onward to see the Pantheon, churches (what felt like thousands of them everywhere), the famous Trevi Fountain, and more. I did not want to let this opportunity go by without doing my best to see everything Rome has to offer.

I use a rollator to help navigate longer distances and provide a ready place to rest. That, along with my hat to protect me from the sun, helped me keep going.

The next day, I traveled to Assisi, the town where the patron saint of Italy, Saint Francis, was born and died. Unfortunately, my excitement was tamped down when it became obvious that the cobblestones he trod on 800 years ago do not navigate well with my rollator.

But to live with MG means having to adapt to get what we want. I couldn’t let some cobblestones stop me from our task this day: spreading the ashes of our late family dog; St. Francis is the patron saint of animals, after all. Though it was slow going, I navigated the heck out of those stones.

I have been fortunate to do great things in my life with MG. Although it’s not the life I planned or expected 25 years ago, it is full and rich and wonderful.

Italy may not be in the cards for everyone, but it is possible to live your best life with MG, whatever best looks like for you. Maybe it’s as simple as planting some spring flowers, watching them grow from your kitchen window, and reminding yourself that life with MG can still have purpose, meaning, and joy.

This article was provided by our partner, the Myasthenia Gravis Foundation of America. It has been reviewed by Bionews for accuracy and relevance. The views and opinions expressed are those of the author and do not necessarily reflect the views of Bionews or Myasthenia Gravis News.