‘Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen.’ Winston Churchill
A few months ago I was contacted by someone who asked if I would speak to a local group of medical professionals about our experience with our son’s autoimmune disorder. When the opportunity was presented all those months ago I didn’t hesitate to say yes, but as the hourglass of time emptied, I have been feeling more anxious and uneasy.
As any regular reader here at Rx for the Soul will know, finding proper diagnosis and treatment has been a nearly four yearlong battle for us. During those four years we have had to fight hard on our son’s behalf and have often been stonewalled by doctors who do not know anything about his disorder, and therefore dismiss our story and his case.
So standing before a room full of medical professionals and telling our story felt pretty scary to me- and as much as I did not want to do it, I knew that I had to. And I am here to tell you how happy I am that I did.
What was supposed to be a 45 minute long talk turned into an hour and a half and by the end of that 90 minutes there was not so much as a mild skeptic in the house. It is amazing what can occur when people are willing to lay what they ‘know’ down and make room for something new.
I tried my hardest to be a consummate professional and I backed up every bit of information I gave with medical records, lab reports, video clips, and even interviews with some of our treating physicians. Even so , based on past experience, I was prepared to be met with scorn. To my credit, I only cried once…. But when I looked around the room at least half of the audience was crying with me.
Last night was a big step forward for me…. I have done scant public speaking in the last four years. I used to be polished and on top of my game, yet I was terrified I might not be able to rise above small and nervous last night. In February of 2012 when Ajay first got sick I was in the midst of teaching classes on grief, loss, and life after death all over the country. I was a scheduled speaker at several National and International Conferences, but ended up canceling all of those speaking engagements because healing our son became priority one. I went from being an eloquent expert in my field to a mother that could barely find her words in casual conversation with a neighbor. My cognitive skills plummeted as stress and exhaustion took their toll. And of course it was not just me who felt the wear and tear- my husband suffered his own bevy of stress related deficits and of course, Ajay has been the one to pay the real price.
Last night, my voice started coming back- not the same voice I used to use… a new one, with a totally different message. Being brave enough to share a story is important…. but finding those who have the courage to sit down and listen is what changes everything.
If you feel like you have the courage to listen, please click on. It will take a mere 4 minutes of your time, and is the trailer for a documentary film that will be coming out in 2016. It describes the ordeal our son and an estimated 160,000 other children in the United States have faced in the aftermath of a streptococcus related encephalitis. Today our son’s life is indistinguishable from any other healthy 8 year old- and although daily antibiotics play a big role in that, there is an equally potent medicine that all families like us receive, and it is dispensed by those who have the courage to listen