I first realized how terrifying MS symptoms could be when I was in my early thirties, standing at my bathroom mirror frantically trying to rub off dark spots with a cloth. I eventually realized the spots weren’t on the mirror. I was losing my vision. About an hour later, everything was dark. I was blind.
“Your optic nerve is inflamed,” said my doctor. “It should go away”.
“Should?”
Fortunately my vision returned ten days later—but I now knew the optic neuritis could show up any time.
Shift forward a few years. I’m standing at the podium of a high school auditorium. An audience of teenagers staring at me as I talk about my just-released book, Crossed Signals — a novel for teens that addresses the emotional impact of chronic illness on the whole family, and the power of good communication.
That day in front of all those teenagers was one of the scariest of my life—but it turned out to be one of the best too!
My vision wasn’t perfect on the morning of my presentation, but I was used to dealing with it and wasn’t ready to put my life on hold. I was already a bit nervous because that’s how I feel about public speaking, but as I tried to find my way to this new place about 45 minutes from home—without GPS—I realized I couldn’t read the road signs any more.
Looking back I guess I was reckless, but when you have MS, you do what you can while you can still do it. All this was so new and exciting for me, I decided to go for it!
I finally got there and it all started out well. I could see them sitting on their seats but I couldn’t make out faces. It was bizarre. I ignored the strangeness of the situation and continued to address the room, but when it came to Q&A I panicked. In that moment I knew that they HAD to know what was going on. I explained the situation. Boy, did that get their attention! They were shocked and curious to discover that they were witnessing an MS attack. They asked all kinds of questions about my experiences with MS as well as the process of writing the book, and then the conversation shifted to them telling ME (and their peers) personal stories of family members, grandparents, uncles, siblings…all dealing with chronic illness. I was amazed at how everyone was touched by this topic in some way.
For a little while that auditorium became a support group. It was beautiful to watch these curious, caring young people share their thoughts and feelings. They obviously felt safe and trusting to share ( that's always my goal). What an incredible experience to see how they really did understand the book’s message.
It was more than anyone expected. There was laughter, tears and love in that school auditorium.
I will always cherish that day.