Summer Dashe

Maid of Honor duties start…now!

I intercepted your family at DFW, Alena Lee! We’ve got a flight full of VIP wedding party members heading your way. The bride’s side is now boarding!

See you soon, Myrtle Beach!

I share this update with excruciating understanding that I am not alone in the moment I am experiencing. So many of you have been right where I am. And that makes it both more tolerable and also more gut wrenching to me.

The testing I had yesterday did not show anything to explain my symptoms.

Hearing the surgeon say that was crushing. Nobody warns you that there exists a crevasse between the actively living and the actively dying where those with complex chronic conditions land. Most people think negative or normal results are a good thing. But they’re the most devastating outcome when you’re still symptomatic.

Because if not that, then what? And if not that, then what do I do to feel better? And if not that, then what do I do next? I can’t live like this forever. That’s what it feels like to be young and sick and in the crevasse.

But there are people meeting us there, trying with all their might to yank us out. They’re funding research. They’re processing samples in labs. They’re working tirelessly to get us the answer we want: We found the problem. Here’s the solution.

I am surrounded by those people at work through ChronicleBio. Our science team blows me away. I know as I recover from an invasive procedure that yielded negative findings, they’re working on figuring out more options for patients just like me.

And as the surgeon’s words hit my brain, floating around in my head alongside the dye he’d injected only minutes earlier, I had someone in my ear reminding me I’m not out of options even though it feels like I am. Standing by my mom and best friend was my former boss, Amy Rochlin, the CEO of Complex Disorders Alliance and a fierce leader in the research space. She talked with the surgeon, made sense of the results, and promised me answers will come someday.

I am luckier than most to have the perspective my work affords me. I am not closer to a cure than anyone else due to my proximity to research, but I have clearer line of sight to where we are in the process. Together, we’ll get there.

How?

Donate to organizations like CODA. Participate in research through companies like Chronicle.

And whatever you do…
don’t give up.

The photo below is from dinner the night before the procedure. Thank you, Amy, for showing up for all of us every day, but individually for me this week. It meant more than you will ever know. Although, maybe you do. You uniquely get it. And for that, I am both sorry and so, so grateful.