I remain awake, staring at the white wall of my VRBO room with my wife trying to sleep as she prepares her emotions for tomorrow; my children texting me from different areas of the country as they worry about how I will fair in my 7:30a EDT surgery.
My thoughts speed through the 3000+ days of torture, and I land on the hope that my wife and I always carried that my pain would eventually subside. Some days better, some days worse, but always the incessant reminder that I had something that no one could figure out.
Thank you for this forum and the opportunity to connect with many of you. I don’t always respond to everything shared, but I have read comments here and there since finding this site and been uplifted in some fashion in knowing there are others experiencing the same things.
I know there are risks and I worry about those, but I also know I have tried a lot already and my path brought me here.
Regardless of the outcome, I am grateful to have options. Having nothing more to do removes any chances of maintaining long term hope and that is where I found myself this past year. And yet, I kept inching forward, clinging to the belief that something could and would work.
So, here we go. I am signing off for now and will see you on the other side (alive and well :).
One final thought. My wife and I were invited to lecture at a university awhile back about our entrepreneurial journey. It was there where we met a young talented student who had all the reasons to succeed in life. And yet, he too was silently suffering. A few months ago, he called me after learning about my vulnerability in sharing my healthcare challenges with a larger audience. After some longer discussions back and forth over the weeks that followed, he had tests done only to realize his styloids were almost 2-2.5 times the normal size. In 1 week, he will have his bilateral ES surgery with Dr. Hackman and believes that his life (in his mid 20s) has a bright renewal.
Why do I share this? I recall the words of Jacques Lusseyran from “And There Was Light—the memoir of a blind resistance fighter in France during WWII”. Jacques’ two fundamental truths resonate with my own. “The first of these is that joy does not come from outside, for whatever happens to us it is within. The second truth is that light does not come to us from without. Light is in us, even if we have no eyes.” My pain was a time of great enlightenment and it opened opportunities for me to bless others through remaining positive, never giving up and even in the case of this young man, being a guide for him to find a solution to his condition.
Never underestimate our ability to momentously change the world, even if we are crippled with something we don’t understand and until t minus 7 hrs., had a chance to finally be freed from.
With much love and sincerity,
JPB
