Traveling With MG for the First Time

Going on road trips is one of my passions.

I love it because it is better for the environment than flying, and traveling in a car allows for a healthy mix of adventure and never knowing what you might come upon. Life is short, but road trips were how I intended to hit all my bucket list locations.

It never crossed my mind that I might become disabled, and that my driving tour of Northern California more than a year ago would be the last time I would travel before my myasthenia gravis (MG) diagnosis.

I’ve always been a planner. Organization and preparation have kept me from being frazzled and anxious. Before MG, I enjoyed planning for trips because it was like already being there — and I savored that.

Now, planning for a road trip doesn’t hold the same excitement for me that it used to.

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My trip-planning has changed

I have a trip coming up soon, a graduation present from my grandfather that had to be postponed because of COVID-19 and surgery to remove my thymus gland. He, my mom, and I are now vaccinated, and my sternum has healed, so we are taking a trip to the Black Hills in South Dakota, where COVID-19 numbers remain low, and we plan to stop at several spots and do some outdoor painting.

However, I have found myself procrastinating ahead of this trip. I’m putting off booking rentals when in the past I’d have had everything outlined in detail months in advance. Now, rather than researching festivals and events to enjoy, I am mapping out all of the hospitals because we will be in an isolated region that might not have reliable cellphone service. There is no way to predict an MG crisis, so planning my first trip with my disease has been intimidating and not so fun.

Not only has planning the trip been unnerving, but the thought of traveling with MG is making me anxious and worried about the risks. Even though we booked the trip when there won’t be a lot of tourists, I still fear that I will fall ill, or that I’ll be too fearful to enjoy myself.

A snowflake who’s afraid of the cold

Traveling in the off-season also means colder temperatures. It might even snow while we’re there, and I’m nervous about how I will react. I haven’t left Florida since my diagnosis. When I go from a temperature of 90 to 70, I shiver and get goosebumps. MG affects everybody differently, which is why it’s been called the “snowflake” disease, but I don’t expect to travel in the cold very well.

Packing for the trip makes me worry about moving and traveling with luggage, and washing clothes and trying to think about things to bring that I might need has been exhausting. MG never fails to remind me how everything will be different now.

To remain excited about my road trip, I’m trying not to focus too much on keeping to the itinerary. Instead, I want to just remember that this will be a fantastic opportunity to make memories with my mom and dad as we share our mutual love for on-site landscape painting.

That’s the plan.

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