A collaborative post with Steve, a longtime friend (and Elder Chaplain subscriber) living in Springfield, MO.

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One Sunday last September, four days after my 75^th birthday, I grabbed a snack while Shelly put a strawberry rhubarb pie in the oven, and we settled in to watch the Kansas City Chiefs play—with the TV muted and Jason Isbell on the stereo.  As I was about to sit down, it felt like I’d stepped on something.  I rubbed the carpet, but nothing; still, the ball of my right foot felt funny.  Half an hour later it was the same thing with my left foot.

After the game I put my shoes on to go for a walk and check on my garden, but my ankles and feet felt tingly—pins and needles.  Taking a shower, the soap felt weird against my body; I cut my shower short and told Shelly we needed to head to the ER.  My walking was getting shaky as we headed for the elevator.  After checking in and heading off for a CT scan, my memory gets very murky.

The next thing I remember is awakening the following morning—paralyzed from the shoulders down, unable to move anything.  I never got a bite of Shelly’s pie.  It was 38 days until I made it back to the apartment.

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On anyone’s list of “Things I Hope Never Happen to Me,” what happened to Steve would rank highly.  Plummeting from vibrant health—12,000 steps a day average—to total paralysis in under 24 hours, with no idea if or when he might hit bottom.  Sensing the uncertainty in caregivers’ eyes and voices as they run tests and grasp at possible diagnoses.  Undergoing panic-inducing MRIs and a spinal tap.  Total dependency on others for feeding and brushing teeth, and total loss of sensation and control over bodily functions from the mid-torso down.  Just like that, an ordinary Sunday afternoon turned into a nightmare with no end in sight.

A few days later, a diagnosis: “transverse myelitis.”  The link can tell you all about this rare condition, but a few things stand out.  In many cases, like Steve’s, there is no known underlying cause.  It is often acute, taking only hours to set in.  And recovery is highly variable—sometimes complete, sometimes reaching a plateau of partial disability, sometimes none at all.  To receive a diagnosis of transverse myelitis (TM) is to embark on a journey where many fundamental questions will remain unanswered. 

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Such a journey is, by its nature, a journey of the spirit, and there are a few things you should know about Steve’s spirit.  He grew up in a fundamentalist Christian home and his family keeps that faith; Steve left that path long ago, but remains in relationship with family by finding a way to “disagree without being disagreeable.”  Steve takes inspiration from the famous 1993 speech by coach Jim Valvano who, shortly before dying from cancer, endowed a cancer research foundation and instructed the world: “Don’t Give Up … Don’t Ever Give Up”—words that Steve has since maintained as a personal motto.  Transverse myelitis may be a tough diagnosis for the spirit, but after four months I’m beginning to think it may have met its match in Steve.

It’s been my privilege to accompany Steve on this journey, even if from afar—I learn and grow every time we talk.  Steve was an early subscriber to Elder Chaplain, and he has offered many great comments, including claiming he was stealing “Best. Life. Ever.” as another personal motto.  When Shelly was able share the news of Steve’s condition with friends, I responded, “Tell Steve to give me a call if he wants to talk to a chaplain who won’t try to save his sorry soul.”  Shelly said that elicited one of his first laughs since hospitalization.  Ever since Steve could actually hold a phone again, we’ve been off and running.

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Recovery looks like it’s gonna be a loooong haul.  Duration of PT currently undetermined, but lengthy.  Below the waist I’ve got lots of issues … my balance is pretty shaky, and I have constant nerve pain in my legs, with spasms at times.  With a therapist hanging onto my gait belt I can walk slowly with a cane, but I’ll be using a walker when not in therapy.  Still, my walking is getting better, and I’ll be breaking in a spiffy new rollator soon.

I’ve learned that very few people say “I had transverse myelitis” … it’s more a matter of just how much ongoing challenge one has.  Living with TM requires a paradigm shift, which so far hasn’t been easy.  I’m learning to celebrate my “cans” and “can stills”, not focusing on my “can’ts” or “used to be able to’s.”  Because of the encouragement from my therapists, but most importantly from Shelly, I’m working on being proud of myself and appreciating what I’ve accomplished.

When I look around at my current rehab, I consider myself lucky.  I’m not a 25-year-old who, after a motorcycle wreck, may be confined to a wheelchair for life with challenges to communicate.  I’m not a stroke victim who may never again be able to put together a sentence or use one side of their body.  I’m a 75-year-old hoping for healing to continue.  I’m a lucky old coot.

I’ll keep listening to and loving music … just not as much of it live as I used to.  I’ll keep on texting and e-mailing and making phone calls … and enjoying being on the receiving end of each.  I’ll keep enjoying each bite of every sandwich.  The adventure and the experiences continue … one day at a time.

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Steve wrote the passage above as part of his New Year’s greetings to friends.  In email exchanges that followed, I marveled at his capacity for gratitude and his ability to find joy in the smallest details of everyday life.  I told him his journey has pushed me deeper into the central questions of Elder Chaplain:  Where and how do people find hope amid loss?  Where does gratitude fit in the process of finding hope?  What role does religious faith/spiritual identity play in this?

Steve replied, “My gratitude perspective began before you and I met—40 years ago!—when I slowed my drinking … thanks to getting drafted!  But the perspective really hit home the night of Oct 30, 2002, sitting in a hotel in Virginia Beach, watching Warren Zevon on Letterman.  My craziness was minor league compared to his, but the phrase he uttered that night has been a part of me ever since.”

For those who don’t know this story, I urge you to click on the link above—it’s truly remarkable.  The short version is that Warren Zevon was a gifted musician who never made the A-list, but counted Letterman as an avid fan.  Having been diagnosed with terminal lung cancer, and anticipating only a few weeks to live, Zevon offered to come on the show, talk about his new perspective on life, and perform—and Letterman devoted the entire show to his appearance.  His final words to Letterman as he walked off the stage were “Enjoy every sandwich.”  It was his final public appearance.

I’ll close with Steve’s words from his Christmas letter:  “I’m not planning on going away anytime soon, but Warren Zevon was when he wrote this.  It’s the last song on his last album:  Keep Me In Your Heart.¹ Hold your friends close. Don’t wait until tomorrow to make the call, send the text, or write the e-mail. Tomorrow never comes.”

1. If you only click on one link, make it this one … a very sweet song, especially given the context. ↩︎