Thanks to my compassionate and dedicated (also concerned and persistent) dad, I’ve gotten the opportunity to take part in a study conducted by the National Institutes of Health (NIH) on this rare disease I have that’s been weighing me down.
After months of communication with the researchers and assessments of my medical records, my dad and I flew out to Bethesda, Maryland, last week to get the party started.
Some newer and fairly debilitating symptoms made me glad, even as a moderately capable 38-year-old, to have my pops by my side. Literally. When I wasn’t in a wheelchair, his elbow always extended in my direction to steady me wherever we went.
I learned while there that the NIH is “the largest public funder of biomedical research in the world, investing more than $32 billion a year to enhance life, and reduce illness and disability.” It’s serious business (and the security to get in makes that clear from the get-go).
Inside the protective shield, with very genuine COVID precautions within it, magic happens. I mean it. This massive center with a dizzyingly stunning atrium hums at the frequency of change, fueled by the power of hope.
It’s filled with people who believe in a future with less suffering. The gift shop has Dr. Fauci bobble heads and plushies in the shapes of different viruses and body parts. And the smell of Starbucks coffee permeates the surgical masks they provide upon entering.
I like it there.
The study I’m part of is of the natural history variety (as opposed to a clinical study that might be a trial for new meds) and is aimed at finding commonalities among those of us who have relapsing polychondritis (RP) to see if there are more objective ways — like biopsies, imaging or blood tests, rather than just collections of symptoms — of diagnosing it.
With fortune so good I want to head to Vegas, my main doctor in the study has the same disease. Now, I wouldn’t wish this infliction on most people (although maybe a couple), but to have a doctor who is extremely knowledgeable, curious about treatment and who has personal knowledge of the experience of living with RP is truly more than I could hope for. Plus, she’s the warmest and most compassionate human you could imagine.
The nurse who coordinated my visit is as helpful as she is lovely. It’s a dream squad, one that is now an extension of my medical teams here in Utah.
So I underwent a bevy of scans, bloodwork (which started with a casual 26 vials and a giggle fit with the phlebotomist), tests and consults.
Our days would start at the NIH and end at one of the incredible culinary extravagances we found within walking distance from our hotel. Outstanding Spanish food, delectable and iconic Maryland blue crabs, Asian street food and creative Mexican cuisine.
Bethesda, why have you been so modest?
We Gombergs take our food as seriously as our health, so this was a success in and of itself.
But it gets better.
After the majority of results had come back and we were safely back home, we got to have a debrief with the NIH team. I was nervous. My wife, Elenor, and my parents joined the virtual meeting. We had so many questions.
With incredible patience, expertise and empathy, my doctor went through each result and inquiry. The news was reassuring.
Despite the notable turmoil and discomfort, my body hasn’t weathered much permanent damage. There are some things to keep our eyes on, but I’ll head back in a couple of months and we’ll reassess and track.
This news has been like a crane lifting a boulder from my shoulders. The ground looks further away, like I’m probably standing taller now.
And it seemed to remove the blinders that kept me from seeing very far into my future.
I can envision myself witnessing my son’s life again. I can see myself singing Better Midler songs with Elenor on our way to get the early bird discount at dinner. I can worry about outliving our planet again (ha, it’s not all sunshine and roses over here).
I can take a deep breath again.
I’ve realized that I am living with disease; I am not dying.
So, what should we have for dinner?
Marina Gomberg is a professional communicator, a practicing optimist and a lover of love. She lives in Salt Lake City with her wife, Elenor Gomberg, and their son, Harvey, and their dog, Mr. Noodle. You can reach Marina at email@example.com.
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