The Broken Places

A small sign that hangs by the door at MGH-Lunder 6, home to the Neurosciences Intensive Care Unit

“The world breaks everyone, and after some are strong at the broken places.”

Ernest Hemingway, “A Farewell to Arms”

Some of you have learned of the coda to our last communication, however, many have not. One of the reasons we created this blog was to remain in contact and share what we see and learn along the way. We are in Boston. Our departure from Cleveland took longer than we expected, and we experienced several medical challenges that we could not foresee.

Arriving closer to home is a comfort, but we have also been reacquainted with the perils of this journey. Our surgeon in Cleveland provided sobering counsel that recovery would not be anything resembling a straight line. And it has not been. In fact, the disorienting and unpredictable trek has been challenging as much for its surprises and setbacks as for its sheer gravity. One day we appear to be sailing free, and the next we are backtracking a week’s progress; another we are near the door that takes us out of the hospital, and the next we are blasted seeming back months in recovery.

We are in Massachusetts General Hospital, MGH to the Boston residents among us (or "massive genital" as Deb and I comically learned from a college classmate who did his residency at Dartmouth-Hitchcock and still bears a light-hearted grudge). Deb was moved from the Cleveland Trauma-Surgical ICU to MGH’s Neurosciences ICU by way of a 10-hour ambulance ride across I-90 on Monday, August 9. Traveling by ambulance was not enjoyable, for the patient or caregiver. My defense in choosing ambulance over Learjet was that Deb does not love closed-in spaces and she voted “No” when I offered the choice; but this was an epic fail, and using a jet would have been the wiser choice. As is commonly said now: “My bad”. But that does not take away my sense of letting Deb down. A life partner needs to overrule in the face of compelling logic.

MGH is a hoped-for way-station to a rehabilitation hospital so that we can return home. Home will be familiar, but it will be different. I stopped there yesterday, and it already feels a bit lost without Deb, the creative spirit who brought it to life. The last month has taken a toll, and we will need to adjust. Care priorities have shifted. Some treatments will be discontinued, and others will move to the fore.

What has not changed is Deb’s amazing character and the way in which she uses the ICU bed as a place of ministry. The genuine compliment to a nurse for the way she styles her hair, laboriously written out with love on a whiteboard. Or the gentle assurance to a young nurse and wife celebrating an anniversary, spoken as a woman with wisdom and a wife of nearly 36 years. While her world is throwing curveballs and hurdles, she directs her care with a jaunty thumbs-up and sprinkles her communications with hearts and flowers that transcend language, bringing beauty to the often grim reality of a hospital.

The departure from Cleveland was bittersweet. We faced an awful decision of whether to tackle emergency surgery, knowing that ALS has the final say in spite of the caliber of your surgeon or ICU team. And it was a perilous time. But I believe that Deb was also there, in her small way, to bring humanity and love to another corner of the universe. On the morning she was wheeled to the ambulance for the trip home, a dozen nurses and nurses aides and residents popped into her room to wish her safe travels. And a sweet card from her first ICU nurses in Geneva on the first harrowing night lay waiting in Yarmouth when I returned home yesterday. As one dear friend said: “I am not surprised. She has a presence.” I could not write it any better. I have lost track of the number of healthcare workers who say: "I am not supposed to say this, but you are one of my favorite patients".

One of the greatest witnesses to grace throughout my life has been my “partner in crime” (the term Deb uses to introduce me to strangers now). Her serenity in this trial has been a source of beauty. When I finally caught up with one of her doctors back in Boston, recounting the difficult two weeks just completed and knowing the scars left on Deb’s body, she said “How is Deb doing? Is she discouraged?” I said: “No. She is hopeful.” She is not naive or pollyannaish or delusional or stoic. She prays for miracles to occur, but she also knows the stakes and that her true comfort does not lie only with her medical care (she refuses to take opioids or narcotics, preferring as clear a head as she can muster). From what I have seen, and these are difficult ideas to constantly confirm due to our communication barriers, she is a woman who takes unwanted adversity as a gift or an opportunity. It is not fair, but neither is life fair. Some of life's greatest challenges are preventable, especially the cruelties one human inflicts on another. And some of it is the indifferent hand of nature. I believe that Deb has one of the best arsenals to contend with the forces that can hardly be called cruel, because they do not rely on motive or malice for their sting. They just are. And they cannot crush her spirit. And they make her larger to all of us who love her and some who have just briefly encountered her. For me, they are aspirational; and I wonder at a world filled with people who chose that path.

That’s a gift of pure love she gives to me as a witness and to everyone she meets each day in this struggle.

Please be in touch with Deb by whatever means makes the most sense.