Hello Fellow Survivors,
I haven’t seen a post about meeting others with ES in person, so I thought I would share my recent experience. This past Friday afternoon, a person appeared on my doorstep in response to a minor service call I’d made earlier that morning. Someone else was scheduled to swing by but got called away on a far more pressing matter. The person who eventually showed up said that they were just going to call me to follow-up but later decided to stop by the house.
As we were talking about DIY projects around the house, I mentioned that I was behind on my list of things to do, because of recent surgery. I turned my head and tilted my chin up to show the scar for emphasis. They looked at me and asked oddly, “Vascular?” to which I replied, as I’m sure we all have at one point or another, that I have a rare disorder called Eagle syndrome, blah blah blah.
I thought that would be the end of that conversation, but the person again asked, “Vascular?” and a bit flustered I said something like, “Well, yes, it’s vascular Eagle syndrome. Why? Have you heard of Eagle syndrome?” I was fully expecting to hear a “no” as usual, but instead this complete stranger turned their head with chin tilted up to show me their own scar! It took a long moment for the realization to hit me that I’d just come face-to-face with another person who’d been diagnosed with ES!
As it turns out, the person hadn’t just been diagnosed with ES, but vES, and had run through virtually the same gamut of doctors that I had. They had surgery on their left side performed last April by Dr. Coniglio (!!!), almost exactly one year before I did. They also had an invasive angiogram performed by Dr. Taka! Hearing all that, I had to sit down on my front stoop. I was blown away. And then, as if on cue, my mother appeared, driven by a cousin. When she heard the person relate their mirror vES journey, her mouth dropped open.
By that point, I was in tears still sitting on the stoop. Finally meeting someone in person who’d gone through the same agony and who could testify to the damage it inflicts on a person’s life made what I had been through feel real in the realest sense. I hadn’t realized that up until that point I still felt as though I had to prove to my family and others that the devastation wasn’t something I exaggerated. The stranger’s own painful testimony was validation that it wasn’t and isn’t.
In all my years of being sick, I’d never before met another ES survivor in person, let alone a vES survivor. I felt like I was the only one in the entire region. Seeing their scar made me feel an almost instant sense of kinship with someone, who moments before was a complete stranger. It was like meeting a long lost sibling I didn’t know I had. Surreal.
To think the connection would have been lost if they’d picked up the phone and called instead of driving to my house! That they chose to come to the house and that my mother and cousin chose to unexpectedly pay a visit at the same time was/is absolutely bananas! Nothing about the encounter (an encounter I didn’t know that I needed) was happenstance, at least not in my mind. God works in mysterious ways.
Well, thank you for reading about my amazing and completely unexpected encounter. I thought I would share it with all of you. If you haven’t had the opportunity to meet another ES survivor in person and give them a big hug as well as receive one, I pray that you do and soon! It’s some of the best medicine on the planet that money can’t buy and insurance can’t deny!
Blessings 
