Growing up in San Antonio, Texas, I had a classmate and friend, Kurt Krause, who loved science and was determined to be a medical researcher. When my asthma was particularly problematic (which was most of the time), he would occasionally say, confidently, that when we grew up, he’d find a way to cure it. And I believed in him.
We grew up, and stayed in touch intermittently. Kurt did become a physician, earning an MA and PhD in addition to his MD. He taught and did medical research at such little known places as Baylor and Harvard. (Unfortunately for that promise, largely on infectious diseases, though, only tangentially on asthma.) Eventually he and his family moved to New Zealand to continue his research at the University of Otago Medical School in Dunedin. You’d think I’d give up on that old promise after 30-odd years or so, wouldn’t you? (You obviously don’t know me well – I have a VERY good memory!)
When things got particularly scary for me in 2013, I reached out. Kurt helped me make sense out of the test results and the perplexing nature of all the other problems that had built up, and now were hitting me like debris in a tsunami. When it began to feel like I was on an Alice-in-Wonderland bad trip of medical disasters, Kurt would talk me down, point me toward other research and provide a touchstone of sanity. And he’d make me laugh – which always helps.
Then he started telling me I needed to write about all of this. And he didn’t mean my posts on Facebook for family and friends, or in emails to him, recounting my latest wild adventure in the ER. Given that I was having trouble typing or even sitting upright because of my steroid myopathy, that seemed impossible. But he’d keep at me, switching from pushing a book to a blog or website. Still my response was, “Who the hell wants to read about my medical crap?”
Kurt, however, embodies the stubbornness of all great researchers. He kept saying something that I had more and more trouble discounting:
“Deb, when the doctors first told you how concerned they were, how much sicker you were getting, and eventually what they suspected it might be, what did you do?”
“You mean after I found out they really didn’t know all that much about eosinophils and what they might be doing to my body?”
“Yes. What did you do?”
“I went home, wrote you and started researching it all.”
“What did you find?”
“Links to a paragraph each at Mayo and Cleveland clinics, a paper at NIH. Very little.”
“Then what?” “I wrote you again, I kept researching, asked each doctor to teach me what they knew …”
“What did you most want to know?”
“Was this going to kill me? And how fast/how bad would it be?”
“What if you had found someone who’d been going through it longer than you, who could answer some questions and tell you what helped them, and what didn’t?”
“It would have helped immensely.”
“YOU should be that person.”
Turns out Kurt wasn’t alone. Independently, several of my doctors were pushing me to do the same sort of thing. After all, they’d say, I’d begun my career as a journalist, so I knew how to write. They seemed convinced that their other patients, even those without all my problems, and fellow doctors would read it. Several insisted it also might help their fellow doctors or medical students rethink their approach to how they care for patients with complex cases. And how they use excuses to avoid hard discussions.
Now that I’m doing better, that I’m getting stronger, I decided to give it a try. At least to see if there were more people than the handfuls I’d met through chat rooms and doctors, who want to talk about these things.
But it all began with one old friend.
So here’s to the power of friendship. And to a special old friend on the other side of the world, who made all this a little easier when it was truly overwhelming. Who never brushed me off, but always made sure I could feel that hand grasping mine in the frigid water.
Thanks, Kurt. I owe you.
— DALA, Washington DC May 4, 2019
