Skip to content

To Begin: What Illness Takes

  • Personal

Hello, world (from Southern California)!

My wife recently took a position at the University of Southern California, so I’m writing this from sunny Los Angeles.

I’ve been using the ideas ideas for MeaningWell in practice for a few years: that knowing how to tell a good story and listen to one even better can cement doctor-patient relationships, improve health outcomes, and lower costs.

With this new start, I’m officially launching MeaningWell, where I want to talk about the details of these ideas, what they look like in practice, and what academic and “Narrative Medicine” work is being done to support them.

I’m not an MD or a healthcare provider. My interest in healthcare comes from the patients’ side. I’ve been the guy in the ICU with a weird, relentless fever that doctors just don’t understand. I’ve been the guy in the hospital bed who can understand and feel — even through my delirium — if a doctor was truly listening or if they were just pontificating for their residents.

My undergraduate background is in theater, and I’m primarily interested in how the technical ideas I discovered there intersect not just with business and medicine, but with the flow of our everyday lives in general.

So, to start, this is a story, meaningful to me, about what illness took from me when my wife and I moved from my native Illinois home to this strange, wonderful world of Southern California.

The Move

I grew up in north-central Illinois, and consider my family to have deep roots there. I lived in Germany for a year, and went to college in New York state, but I always thought I’d return to Illinois, where all my family is.

When I married Megan, I knew that that meant our days in Chicago were probably numbered. When I met her, she was a graduate student, and this summer, she officially finished her PhD. As a scientist, I knew that she would likely do a postdoc, and that it would likely take us to one of the coasts. Sure enough, she accepted a position at USC in August.

I knew she would be busy finishing her dissertation, tying up loose ends for publications she had in the works, and be generally preoccupied with everything that goes into finishing a major degree.

Toward the end of July, I started to feel tired. It was hard to get out of bed. I shrugged it off, and thought I needed more sleep. (I probably do, anyway.)

I had a little nasal congestion with the swings in weather Chicago was having, and thought the pain in my chest was mild chest congestion as everything that was in my head moved south.

I had some aches in my back, and thought I was just still getting used to the new mattress we had purchased. (Towards the end, I was actually terrified I was allergic to something in it.)

I thought I had bad heartburn that antacids wouldn’t fix, and thought it was some kind of related symptom to the (apparent) chest congestion.

The achiness got so bad, I thought I had a fever.

Finally, the ache in my back got so bad, I took off my shirt in front of my wife, and said, “Can you see anything on my back?” Her mouth dropped open: “You mean all those blisters?” There was a semicircle of large blisters running from my spine around my left side under my chest, ending in a big round patch at the bottom of my sternum.

That explains the “heartburn”.

The next morning, the nurse who took my vitals and preliminary symptoms casually asked, “Have you ever had shingles?”

So there we were: a month before the biggest permanent move I’ve ever made, my wife hustling to finish her doctorate, and I come down with a painfully debilitating illness.

In my mind, I imagined that my last month in my home state would go something like this:

  • I take care of the details about movers, a moving van, and storage
  • Megan finishes the draft of her dissertation
  • My sister and I hike around The Garden of the Gods in Shawnee National Forest, take in the Cahokia Mounds, and visit my nth-degree-great-grandfather Edward Hall’s grave once more. I helped dedicate his grave as an official Revolutionary War Veteran in 2005, and the Sons of the American Revolution list him as “Private, Spy”. How cool is that?
  • I help Megan edit and proofread her dissertation
  • Megan and I visit the top of the Sears Tower to get one last overview of the City of Broad Shoulders
  • I run 5 miles (8km) by the lake
  • Every time I pass by a Garrett’s Popcorn, I would buy some
  • Hear Megan’s public defense of her dissertation to become Dr. Megan Rexius-Hall
  • Go to one last World Series Champion Chicago Cubs game
  • Leisurely put all the boxes into the moving container
  • Spend a fun, easy-paced week road-tripping through the American West

I can’t help laugh as I write this list.

I spent my last month as a Chicagoan on the couch, taking painkillers that weren’t strong enough, asking Megan to take a break from pounding out her diss long enough to please go to the store to get me some more orange juice.

The final insult-to-injury was the Cubs game. My parents, sister, Megan, and I all had tickets. I was feeling well enough to go the morning of, but on the way to the game, my body decided to start vomiting. So, 2017 is the first year in a long time I will have gone without seeing The Lovable Winners play.

Megan got her PhD done, and with high praise from all her advisors. We got the moving done (it was neither pretty or leisurely).

We did drive our car out to California, although we put in some late nights driving, and we got to California the night before Megan began her new job.

What Illness Takes

The focus in healthcare is often on death, and what death takes from us as people. This certainly isn’t wrong. The World Health Organization, though, states that “health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.”

I wanted to say goodbye to the city I love and the state — for all its many flaws — that will always be home. I’m physically fine. There’s still some residual discomfort, but we’re settling in in our new surroundings.

Certainly, what my illness took from me this time around is relatively minor. Illness still takes. I don’t feel like I got to say goodbye to all the things I love about Chicago. I barely felt well enough to be social at Megan’s celebratory party. I certainly didn’t get to say goodbye to the people who made the city what it became for me.

Any discussion of what illness takes from us can’t immediately jump to a discussion of life and death. Illness can take our quality of life. Illness can take our independence. Illness can upend our plans. Illness can put a burden on those we love.

If health is not merely the absence of disease but the presence of well-being, then, part of what makes us healthy is our ability to fully articulate what illness takes from us and from those we love.