Wheels for Days
Since my initial diagnosis of myasthenia gravis (MG) in June of 2021, trying to find and maintain some normalcy has been a biggie for me. Like many others that have had their world rocked by this condition, many things I love have taken the back burner.
Traveling, for example. My spirit has always been drawn towards experiences and places so when our trip to Las Vegas was drawing near, I was determined MG would NOT hold me back. Especially with the fact this was our first trip as a family, and the first time ever for my children.
How will I get around?
Although I am a few months into treatment, my doctors and I haven’t quite found the sweet spot to get me stable, so I knew this trip would take some creative thinking and solutions to keep me going.
If you’ve been to Las Vegas you know walking is just part of the package, and when I say walking, I mean miles in a day for a few days. So much to do, so much to see! Yeah, that wasn’t gonna work for me this time around.
Immediately I thought of a mobility scooter! You know the ones with the nice comfy seat, big basket in the front, and stick out like a sore thumb? Yeah, that one! Ha!
Renting a mobility scooter
As a matter of fact, it was very easy to locate one and set up the rental. The scooter was dropped off as soon as we got to the hotel and picked up right after check out.
Now for the hard part ... actually using it. I just couldn’t wrap my head around the fact that this was now necessary for me when a year ago I was hiking up waterfalls!
Although I can walk short distances at a time, I didn’t want to cause any unnecessary hardship for myself, my family, and definitely did not want to end up in the emergency room in another state.
Living with an invisible illness
Let me just say, the stares did not go unnoticed. Neither did the awkwardness, or the slick comment (we’ll get to that in a bit). This is where the invisible illness comes into play.
I do not look like weak legs, shortness of breath, dysphagia, and fatigue. I zoomed around the hotel and down the street in my trendy "mom" jeans, cute top, and tennis shoes that I so carefully planned out for this trip.
So many people seemed confused, and if I’m honest, a little annoyed when they would lock eyes with me. I’m sure they just couldn’t figure out why this perfectly "normal" looking young woman was using an electric scooter.
What they don't see
At one point while parked and waiting on my family to get some slushies, a group of girls walked by and I heard one comment to her friend, "She’s too skinny to walk, that’s why she’s in there," as they laughed.
That comment broke my heart. It was like the straw that broke the camel's back. No one realized I was just a mom trying to make the best of a not-so-ideal situation. No one knew the countless doctor visits, lab draws, emergency room visits it took to get me to this point.
Nor did they know it had been over 5 months since I was able to eat a solid meal without food getting stuck in my esophagus.
They didn’t know that just a few hours before that comment was made, I shed silent tears to myself in the mirror as I looked at my thin frame now 30 pounds lighter than it used to be, clothes barely hanging on to me.
Just be kind
As quickly as that moment of heartbreak came, it moved on to resilience and forgiveness. Yes, I experienced all of that hardship and more. But I was not backing down. I was fighting for myself and for those I love.
I realized I am more than what the eye sees and more than what others perceive of me. Forgiveness - because these people did not know my struggles and for some, it’s hard to think of a life so drastically changed. I think back to my "healthier" days and I could have been any one of those passersby.
I don’t know who this article may reach. People with MG, suspected MG, a caregiver, or "what the heck is MG and how did I get here?" Whatever the case is, choose love, choose acceptance, choose understanding. Just be kind. To others and to yourself.
Have you made any MG-friendly adaptations to your home?