What do you get when you mix Bob Dylan’s “Highway 61 Revisited” with a trip down memory lane on the Pali Highway (Hawaii Route 61) in Oahu? This blog post, which is about accompanying my son on his journey with TBI. Let me explain.
Pastor Jim Sequeira visited my son Christopher in his adult care facility on Thursday this week. As you may recall, Jim is from Hawaii and brings his ukulele to play for Christopher. Christopher loves Hawaii and Hawaiian culture. We visited Hawaii several times during his teen years. Here is Jim’s report of his time with Christopher via a text thread:
“It was good to see Christopher. When I arrived, he was in his chair and after about 30 minutes they moved him on to the bed. Didn’t take them long and I stayed for another 20 minutes or so…
When I arrived, he was leaning to his right, not too responsive during the first 3 songs—maybe because they were hymns. But when I said let’s take a trip to Lanikai Beach and started describing the road trip he sat up straight. About 5 minutes into our trip was when the nurses came in.
Just before I left, I prayed and rubbed his arm sharing, ‘The Lord bless you and keep you…,’ and his mouth started opening and closing as if he was saying something, but nothing came out. I said, ‘Thank you’ and left.”
I was struck by Pastor Jim’s statement that Christopher sat up in his chair. I have never seen him sit up straight since the injury two plus years ago. So, I asked Pastor Jim, “He actually straightened up in his chair? Straight up?” He confirmed that Christopher sat up straight as he took Christopher on that imagined trip to Lanikai Beach.
I shared all this with Dr. Potter (M.D., Ph.D.), noting that I hadn’t recalled Pastor Jim ever receiving this kind of apparent responsiveness from Christopher:
“I was struck both by his sitting up straight once Jim started talking about Hawaii and playing the Hawaiian songs, and then appearing to try to speak when Jim was saying goodbye. Christopher was never into hymns but loves Hawaiian music. Of course, one cannot know for sure what transpired. But I take these two items—sitting up straight once Jim started talking and singing about Hawaii, and looking as if he tried to speak in response when Jim was saying goodbye—to heart. I ponder them and will look for similar patterns in the future.”
I then went on to ask Dr. Potter, “What do you make of Jim’s observations, my responses, etc.? Glimmers of realistic hope?”
Here’s Dr. Potter’s response. As with Pastor Jim’s abundant pastoral care, I am always so grateful for the incredible investment of time, patience, and wisdom this medical ethicist and expert in palliative care gives to Christopher and us:
“Christopher’s response as reported is actual intentional response—intentional response with limitations as you have seen.
The capacity to sit up requires coordinated function of motor neurons located in the area of damage.
The attempt to speak matches other reports and your own observations.
The fact that Hawaiian music was the stimulant means only that Christopher responds to what is valuable to him. That seems like a primitive response, but it is actually an advanced mental response that requires that portion of neocortex that recognizes what is meaningful to Christopher. Meaning is an advanced psycho-relational capacity.
All in all, nothing really new, but reinforces what you have experienced in the advancing up the scale of capacity.”
I called Dr. Potter to clarify a few items from a follow up email I had sent before receiving his response. I noted how Christopher sat up as soon as Pastor Jim started “talking” about taking Christopher on a journey to the Hawaiian island of Oahu, specifically Christopher’s former places of interest there, including roads and places we stayed. I emphasized again that I have never seen Christopher sit straight up in his chair. I also corrected my earlier statement: Pastor Jim only started playing the Hawaiian songs later. Christopher sat straight up as Jim painted a picture of the road trip with words, taking Christopher on the Pali Highway (Hawaii Route 61) to Lanikai Beach, stopping at a 7-11 on the way for spam musubi.
I then followed up with an email after our phone call to make sure the notes I took from our conversation were accurate. Dr. Potter said on the phone that actually, it requires more complex brain activity to process words about Hawaii that simply hearing music.
Dr. Potter also said that it involves a “whole body experience” to cause Christopher to sit straight up. I noted during our phone conversation that there is so much we take for granted with our intentional movements. They are far more complex than we perceive.
I then added that while encouraging, I understand these intentional movements are still rudimentary in terms of how far Christopher must go to attain meaningful recovery. To this, Dr. Potter responded: “It is still in the early stages of recovery,” meaning that I need to be patient and think long haul. In other words, we’ve got time and Christopher is in the process of healing.
When I asked in still another email Dr. Potter if my recollection above correctly recalled and accurately interpreted his assessment on the phone, he responded in writing, “Exactly!”
Let’s now return to where we began in this post. Back in 2003-2004, I took my family on a road trip from Portland, Oregon to Princeton, New Jersey. The trip was for my eight-month sabbatical at the Center of Theological Inquiry in Princeton to work on my book project, Consuming Jesus: Beyond Race and Class Divisions in a Consumer Church (published with Eerdmans in 2007).
I still recall how many times Christopher and my daughter Julianne said in exasperation from the back seat on the way, especially in Nebraska, “Are we almost there yet?” “Are we out of Nebraska yet?” You can only imagine how challenging that 8-day journey (that included a major snow and ice storm in Oregon; it took us three days to get to Idaho!) must have been in late December and early January. Our van was loaded with our kids, German Shepherd-Husky mix Dusty, and eight months of belongings.
I purchased a CD of Bob Dylan’s Highway 61 Revisited for the journey back from Princeton to Portland in August. We must have listened to that CD most of the way home. I can’t recall. But I bet Christopher can recall the trip to and from Princeton. And no matter how many times he and Julianne said, “Are we almost there yet?” when they weren’t fighting in the back seat, I can say, what I said then, “We have a long way to go.”
Christopher enjoys Dylan. Perhaps that is why his daughter Jaylah always asks me to play my Dylan CDs in the van now. Like father, like daughter. He also loves IZ. Christopher loved the trip from Honolulu to Kailua and Lanikai Beach more than anything. He knows the Pali Highway— Highway Route 61—well. We stayed in Kailua and Lanikai, as well as Waikiki on those trips many years ago. As Dr. Potter said, “Christopher responds to what is valuable to him.” So, I will take him on more of these trips down memory lane. I can’t wait to sit up in attention as part of a whole body experience whenever he responds to “Highway 61 Revisited—Hawaiian Style.”
I am so like my children were then on the cross-country roundtrip back in 2004, albeit on this journey with TBI. “Are we almost there yet?” “Are we even out of Nebraska?” Not yet. Please be patient, Paul. Listen to more Dylan and IZ along the way. We have a long way to go, just like my Christian faith, which itself involves a whole-body experience of blood, sweat, and tears, especially now. Such a very long way to go.
As Dr. Potter said, “It is still in the early stages of recovery.” We’ve got plenty of time on our hands. Christopher is in the very slow process of healing on this roundtrip to meaningful recovery.
Pastor Jim played three songs for Christopher. One of them was “White Sandy Beach.” Here’s a version played by IZ. Here’s a live version of Dylan playing “Highway 61 Revisited” with his band and Susan Tedeschi. Here’s a picture of Christopher on July 13, 2013, taken from the place where we were staying in Lanikai. To read the various posts over the past two years of this journey with TBI, please go here. Thank you for your prayers!
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