There’s a saying that goes something like “You can always find what you’re looking for.” There’s truth in that saying, even if “always” isn’t always true. In other words, there may be times that you cannot find what you go seeking for. For example, I often go searching in the fridge for peanut butter, pickles, or humus, but can’t find it, even though it’s staring me right in the face. My wife Mariko must get involved and hand it to me. Isn’t that what marriage is for? She helps me find what I’m looking for in life.
Sometimes it takes my wife and me to work in tandem to go in search of what we’re looking for, including matters bearing on our adult son Christopher’s condition with TBI. The past two nights were seemingly disheartening. My wife went to see Christopher on Thursday evening, and I went on Friday evening. He looked so uncomfortable both nights. It appeared that his spasticity had spiked, even though we have often seen so much improvement prior to Thursday since his baclofen pump surgery.
My heart sank when I entered Christopher’s room last night and saw his neck and head resting at nearly a ninety-degree angle on his right shoulder and his right arm shooting straight across his torso like a board to the far-left side of the bed ending with a closed fist. The right side of his back was also arched and turned toward his left. He appeared alert, but was fixed in that position. Who knows how long he had held himself in that stance? “What am I doing to my son?” I asked. “Is this helping him achieve or move toward a meaningful quality of life?”
I try my best to be honest and keep it real with hope. No Disneyland fantasy world hype on the one hand and no Dylan-esque “Desolation Row” on the other hand, but realistic hope in the middle. In contrast, Christopher was not resting in the middle or center of the bed. Part of his body was lurching to the far right and part of him was straining to the far left of his bed.
In the spirit of keeping it real, secretions and saliva were oozing from my son. Christopher has been drooling quite a bit as of late, and the right side of his shirt and bed sheet underneath his right shoulder were drenched. I should have been playing Stevie Ray Vaughn’s live version of the song about flooding down in Texas. We’ve been drenched with living the blues throughout this ordeal.
I went in search of the RN, RT, and CNA. They were very responsive and prompt, though the facility was short-staffed last night. The RT came and suctioned Christopher several times. The CNA arrived in short order to give him a complete cleanup, changed the bed sheets, and put his night-time clothing on him. The nurse prepared the oral baclofen that would be administered through my son’s gastrostomy tube (g-tube). To provide context, the pain doctor had recommended that the staff continue to administer oral baclofen at those times when the spasticity spikes and the baclofen pump does not prove sufficient on its own.
Prior to the staff coming to assist Christopher, it dawned on me that perhaps increased spasticity was not the cause of the contortions. As I made various efforts to move him and clean him up prior to their arrival, I looked carefully at Christopher’s eyes and responses and perceived that he may have been more conscious of his condition than in the past, including how drenched he was. Maybe he was able to respond more due to the greater flexibility and fluidity of his limbs and body as a whole. Sure he looked very awkward, painfully so, but at least he was far more mobile. Upon further review, I really think Christopher was trying to move the right side of his body to avoid the drenched sheet and bed. Sometimes my initial assessments and judgments, which are often quite hasty, are plain wrong.
To be honest, I wasn’t looking for a positive sign in this ordeal. I was thinking the worst in this case: increased spasticity and possible deterioration of my son’s condition. But everything changed when I concluded that my initial judgment may have been too sudden and premature, and that Christopher might have been doing everything in his inhibited state to address his discomfort. He cannot speak yet, apart from the very occasional word. His call button was not on his bed, but behind him against the wall. Otherwise, he might have been able to hit it to call for help, as he has been prone to do from time to time, according to staff.
Christopher looked very comfortable and fell asleep after the RT suctioned him and the CNA changed him and cleaned up his bed. I informed the nurse that Christopher’s stint as a contortionist was likely not the result of increased spasticity, but increased responsiveness to his surroundings and an attempt to escape the discomfort of his very unpleasant situation. The nurse and I decided that we were better off not administering the oral baclofen, since it no longer appeared necessary.
What is necessary is that I look for any sliver of realistic hope amid this relentless ordeal, as I said to the RT. Like Houdini, I sometimes have to position my thinking in all kinds of contorted ways to find a way out of being trapped in despair. You and I can find what we’re looking for in life. The question is: What is it we are looking for and who will help us find it?
My late mom, whom Christopher adores, used to frustrate me with her own spiritual contortions of praising God in the face of struggles and disappointments in life. I feared that she was living on Fantasy Island or in Disneyland, and not simply because Dylan’s voice in Desolation Row did not match her standards as one trained in opera and as a soloist. Only later, much later in life, have I come to the realization that my mom’s fortitude pumps spiritual nutrients even now into me as I tend to Christopher and his family. Her repeated refrain “The Joy of the Lord Is My Strength” gives me strength to carry on.
Of course, I can choose to discount the pain and suffering of my adult son’s tragic situation and pump sunshine through an imaginary g-tube to my gut, or I can choose to throw in the drenched towel and bed sheet. But I choose to think based on manifold observations last night and a year and a half of days and nights with TBI that maybe my son was responding as best he could to address the matter on his own. Perhaps more like that is yet to come.
It’s better that I do not impose my expectations for myself on Christopher (like I have often done over the years to his keen frustration), as to what I would do to resolve the situation. Christopher could not speak with words or cry out in a loud voice last night. He had no call button close to hand. All he could do was what he did, which is more than I have seen in the past since his TBI. You’ve got to start somewhere in a crisis situation, so I choose to start where Christopher has come from, where he is, and where he will be heading in the days ahead. Like my wife and me with humus in the fridge, I am going to try and see through my son’s eyes as much as possible to find the meaningful quality of life we’re looking for.
You can find the various posts on our unbelievable journey with TBI at this link. Thank you for your kind thoughts and prayers! God bless you in your search for life!