Those were the words my friend Wayne chose to use to close his recent comment on one of my blogs. I found those words profound and I liked them so much, I asked him if I could use them. Wayne had written to thank me for writing my blogs. He said, “You get me. Myasthenia Gravis can be difficult and only people with MG know how certain days can be harder than others.”
Wayne called us “snowflakes” because symptoms of MG are very much like snowflakes; here now, gone a moment later. In fact, Myasthenia Gravis is called “The Snowflake Disease” for that reason. Symptoms can be there one moment and then melt away and disappear, like snowflakes. On the flip side, symptoms can also appear out of nowhere with no warning whatsoever. One minute you’re fine, the next minute you can’t talk, or swallow, or walk. It’s what makes MG so hard to understand to someone who doesn’t have it.
Wayne experienced “The Snowflake Disease” first hand. Before he was diagnosed or even knew what he had, he was seeing doctors for difficulty talking and swallowing. Of course, when he was actually in the doctor’s office or emergency room, many of the symptoms that brought him there were no longer visible. That’s why many of the doctors didn’t believe what he was telling them. Many dismissed him because they thought he was crazy or making it up. When he finally got to see a neurologist, the neurologist knew immediately what Wayne was dealing with. He had Myasthenia Gravis.
It’s no fun having MG, but I say that fully aware that it’s also not the worst condition or disease to have. With medication, many with MG go on to live functional lives. Symptoms can range from nuisance to debilitating and they can vary in intensity at any time. Although there is always the fear of having a myasthenic crisis where you become unable to breathe and could possibly die, advances have been made and less than 10% of people with MG now lose their lives to a myasthenic crisis. Unlike cancer, ALS, dementia and a host of other diseases where prognosis is grim, if not fatal, many people with MG go on to live full productive lives.
MG is a progressive disease and we’re always battling with that fact in the back of our minds. We don’t know what’s ahead of us, but that’s why we need to stick together. It’s also why Wayne’s message of “From one Snowflake to Another” is so profound. While a single snowflake is delicate and fragile, gather many snowflakes together, pat them into a ball and your snowball can cause some real damage. Alone, someone with MG is delicate and fragile, but when we come together and support each other, we become strong. We become #MGStrong! From snowballs, to snowmen, to snow castles, we can become almost anything if we stick together.
Thanks, Wayne, for your wonderful comments and for your inspiration through your words “From one Snowflake to Another”. What a wonderful way to describe those of us with MG.
Leave a Reply