We're in Charge of Celebrations!
There’s a classic children’s book with the name I’m In Charge of Celebrations. It’s been 25 years since I read it. I can’t say I remember the details, but the spirit of this book, which was based on Native American tradition, has stuck with me for all this time.
The author says that when she is low, when she is discouraged, she returns to a mental collection of victories and happy times. She replays that "celebration" in her mind as a series of mental photographs and reclaims the joy and the peace.1
Recognizing the victories
It is certainly like that with myasthenia gravis (MG). It is a frustrating condition. There are many low times. There is no "magic bullet" drug or treatment that dramatically makes symptoms disappear.
Just getting diagnosed can take months or years. The journey from gradually increasing symptoms to remission can be ephemeral.
But there are victories - personal celebrations. It’s up to us to recognize them. Then, like the author of that children’s book, we can mentally photograph those celebrations and keep them for the times when it seems that we are taking "two steps back." We have to define our reasons to celebrate and share those definitions with everyone we love.
Our diagnosis journey
From the very beginning of our journey to diagnosis and treatment, when we couldn’t imagine what the future might bring, there were small victories. It was up to us to recognize them.
There were nurses and therapists with positive vibes. There was the time when I finally managed to get a specialist to come to the hospital and get my (yet undiagnosed) husband off IV Levaquin (a "black box" drug for myasthenia gravis). They stopped talking about hospice and began talking about therapies.2
And there was that time when an incredible neurologist looked deeply into our eyes and said: "This is a condition that you can beat. Let’s figure it out." That was 4 years ago.
Learning to trust our instincts
The first year ... 6 trips to the ICU. One botched treatment, where heparin was administered. (Heparin allergy is a common gene linked in MG.) Dr. M. says we are in her family and her prayers every day.3
Fast forward: We learned to understand aspiration and the effects of MG on the esophageal sphincter. We learned the importance of consistent medication and persistence. We learned to trust good sources of information like Myasthenia-gravis.com. And we learned to trust our instincts.
A year without any hospitalizations — celebration!
But the real celebration came this week. We had been avid bikers for 50 years. Hubby has looked at that bike with longing since the onset of myasthenia gravis. But yesterday he jumped on that bike and rode about 300 feet. Weeble wobbled but he didn’t fall down. Today he went farther than yesterday. A steadier pace. A wider grin.
MG isn’t gone. That regime of meds is ongoing. Still double vision when tired. Still swallowing problems. Still need very regular Mestinon and low doses of immunosuppressants. But as of today, we are in charge of celebrations!
We invite you all to celebrate too. Smile with us ... and let us know when we can smile with you.
How frequently do you experience double vision (diplopia)?