Another Nashville Song: When Hope and Heartbreak Harmonize

Finding Excellent Care in the Land of the unknown

 I called my February Nashville experience a 'different kind of Nashville.' This time, I found myself in Nashville's other musical tradition - the kind of song you'd hear in churches across the South, where hope and suffering intertwine, where gratitude for small mercies exists alongside the honest cry of 'how long, O Lord?' It's the soundtrack of the Vanderbilt Potocsnak Center: full of faith in the process, full of fear of the unknown.

Five months ago, I wrote about measuring Nashville in medical distances. This week, I'm measuring different kinds of space entirely; the distance between being heard and being healed, between hope and heartbreak, between doctors who get it, and the reality that understanding doesn't equal curing.

It feels like riding a tandem bike where one person is pedaling forward while the other pedals backward - if such a thing were even possible. I'm moving forward with specialists who treat me like a person rather than an inconvenience, who offer realistic hope instead of dismissive glances. And simultaneously, I'm pedaling backward into the uncertainty of rare disease limbo, where 'undiagnosed' might be the only diagnosis I ever get.

My suitcase tells a similar story to February's trip, with one notable addition: an entire duffel bag dedicated to my 8.5-pound AffloVest. Yes, the vest that requires its own luggage but couldn't be left behind for eight days. Nothing says "medical travel" quite like needing a separate bag for a single piece of equipment that weighs more than some people's entire vacation wardrobe.

There's another layer to this complex song—the exhausting performance of 'normal' that chronic illness demands. Makeup covers the dark circles that tell the real story (thank goodness for concealer; it's basically medical equipment at this point). A smile becomes armor against pain that would send most people to bed for days. You go to dinner not because you feel like it, but because strategy matters: leftovers mean you can rest the next day without leaving your room. It's chronic illness meal planning at its finest - one restaurant visit equals three days of not having to think about food.

It's the maddening contradiction we live in: working so hard to appear functional that people forget we're not, then feeling invisible when they can't see through the performance we've perfected out of necessity. Well-meaning friends suggest activities with hopeful expectation, not realizing that in calmer times, without medical trips, travel, and appointments, even simple outings have been impossible for months. 'How about church on Sunday?' they ask, while you're calculating whether you have enough energy left to brush your teeth before bed.

This trip brought me to the Vanderbilt Potocsnak Center for Undiagnosed and Rare Disorders. It’s a place where doctors become detectives, and being heard feels like a gift. After many months of doctors back home who barely spent five minutes listening, who made it clear with their expressions and words that complex cases were inconveniences, I walked into rooms full of specialists who actually cared about solving the puzzle of my condition.

I left with a new medication that might help with muscle pain, but no definitive answers, no cure, no breakthrough treatment. Hope, yes, because maybe someday there will be discoveries. However, there is also the stark reality that this is a lengthy process. We've exhausted all the 'common testing,' so now it's a deep dive into genetics and tests that aren't commercially available. Vanderbilt solves about 68% of their undiagnosed disease cases by giving conditions a name, but the fear of being in the remaining percentage who never get answers looms like a heavy cloud.

The One Document That I Use With Every Medical Trip (And Back Home Doctor Visits Too)

Through years of medical travel and countless appointments with new specialists, I've learned that preparation can make the difference between being heard and being dismissed (and remembering everything!). The most valuable tool in my medical arsenal isn't a device or medication; it's a comprehensive medical summary document that I carry everywhere.

This isn't your typical medical history form. It's a detailed, organized compilation of everything: my complete symptom list by body system, every allergy and reaction, current medications with specific notes (like "BRAND ONLY - no substitutions" when it matters), all my devices and DME suppliers, surgical history, and contact information for every provider on my team.

When I walk into a new specialist's office with this document, it saves time. Instead of spending the appointment trying to remember details or watching the doctor's eyes glaze over as I list symptoms, we can focus on actual problem-solving. The neurologist can see my muscle biopsy results. The cardiologist is aware of my pacemaker history. Everyone understands my complex medication allergies before prescribing anything.

I've created a template version of this document for those dealing with chronic illness. It's transformed not just my appointments, but my confidence in navigating complex medical care. Download the Medical Summary Template; it might change your medical travel experience and help make doctor appointments more efficient too!

Yet, for all the preparation and documentation in the world, some journeys still lead into the unknown. So here I am, back in Nashville with my suitcase full of hope and medical supplies, my heart full of gratitude and frustration in equal measure. The geneticists are diving deep into my DNA, looking for that needle in the haystack that might finally give this mystery a name. Because the hard truth is, you can't fight insurance companies for treatments when you don't know what you're treating, you can't join clinical trials for 'undiagnosed mystery illness,' you don't know what support or educational groups to join, and most support services cater to those with a specific disease.

Will I be among those who get answers, or will the mystery remain unsolved? Will the next appointment bring a breakthrough or just more beautiful dead ends?

Stay tuned - even I don't know how this story ends. But I'll keep you posted from Music City, where even the undiagnosed get their own soundtrack.

Thanks for walking this messy, complicated path with me. Here's to making invisible battles a little less lonely, one story at a time.

Love,

Meagan 🍫
Creatively Visible | Making invisible battles visible