Yesterday, my friend Ed Stone and I met for lunch and then went to sit with my son, Christopher, who suffers from a traumatic brain injury (TBI). One of the administrators gave instructions to the CNAs to use the Hoyer Lift to transfer Christopher to his wheelchair so we could take him to a meeting room for a visit (For a prior post on my vision of my son in his wheelchair as a chariot of fire, please refer here). Ed, Christopher, and I had a very meaningful and memorable time together.
After Ed left to travel home, I simply sat with Christopher, held his hand, and looked out the large picture windows at the gray, rainy skies on a cold afternoon. I was so relaxed in silence in Christopher’s presence as I looked outside. I became one with my context. Everything was so subdued that I realized I could feel Christopher’s pulse in his hand. I experienced a subtle touch of warm delight and comfort—my son is alive!
So much has changed since Christopher’s traumatic brain injury in January of this year. So much is yet to change as we long for meaningful recovery. And yet, yesterday, I simply sat in that still, reverential moment with a sense of deep gratitude to God as I felt Christopher’s pulse. My son is alive and we have the privilege of celebrating his 26th birthday this Friday, November 19th.
Context is everything. You would need to know that, as one health care professional told me months ago, Christopher would have died the night of his injury if he had not undergone emergency surgery. I still recall a doctor on hand the evening of the surgery telling me she had never seen the staff move so quickly to get a patient from the paramedics to the operating table. Tears well up in my eyes as I recall these accounts. I am just so thankful for all the surgeons, doctors, nurses, CNAs, social workers, administrators, therapists, support staff, and family and friends, like you, who have helped us make it to this point.
During times of deep sorrow, dark depression, anger and frustration bound up with the saga, I think back to what happened that first night and to all the support we have received day and night over the past ten months. Having a keen sense of context is everything for gaining perspective.
This summer, my sister Nancy and brother-in-law Peter traveled from the east coast to be with us and to visit with Christopher. I remember Nancy sharing with me in Christopher’s room at the rehabilitation facility that context is everything. We were talking about the tiny steps Christopher had taken in his recovery process to that point. They were actually giant steps at the time, if one accounts for the catastrophic brain injury Christopher suffered in January.
Nancy, Peter, and the rest of us were deeply grateful this past summer that Christopher no longer endured fevers that raged and spiked over 107 degrees, which resulted from the autonomic nervous system dysfunction he endured. You cannot imagine what it was like to find his body literally covered with ice in the effort to combat the raging fire within him. We were also truly blessed that Christopher had been breathing on his own for months, and breathing room air for added measure. We were so invigorated that Christopher had progressed to the point of a minimally conscious state.
All of us were emphatically ecstatic last week when a CNA informed us that Christopher raised his more nimble leg to a 45 degree angle in response to her prompt. A neurologist had instructed us to look for signs of conscious control, and that was one of them.
Christopher has never raised either one of his two legs in his mother’s and my presence. Then yesterday, he raised both legs in unison numerous times while sitting in his wheelchair right before my very eyes! I couldn’t tell to what extent the movements resulted from my various requests over a period of time to raise his legs. Sometimes he appeared to follow my instructions, and not at other times. But if raising Christopher provides any context for discernment, he often does his own thing rather than follow my instructions!
My big sister Nancy knows more than a thing or two about trying to gain context and perspective in matters of medical care. She and Peter wisely sought for years to gain a meaningful sense of context and perspective as their daughter Hannah suffered from leukemia. Hannah was diagnosed in 1994 and then relapsed twice before dying in 2006. Something in us died when Hannah died, though her life of compassion, grace, and good humor have left an indellible impression on all of us. Her passing rocked Christopher, as did the deaths of his grandparents. So, I recount with joy how he smiled when his mom shared with him a few months ago about Grandpa, Grandma, and Hannah being with him at his bedside. Christopher can feel the pulse of the impact of their lives.
Nancy doesn’t minimize suffering or maximize it to the point that one loses their bearings. In speaking of the importance of discerning one’s context, she simply shared with me that there are some people who would long to be off a ventilator, like Christopher. Their loved ones would desire for them to attain some measure of consciousness. I want that for them, too. I long for more for Christopher and for them. That is only natural, and I will do everything in my power to assist him in attaining meaningful recovery. Time will help with providing context and perspective for what meaningful recovery literally means in my son’s situation. Until then, I take heart in watching Christopher kicking up his legs. I’d even be thrilled if he kicked me! After all, context is everything.
Sometimes when I am going through major life challenges, my thoughts return to the book of Philippians in the Bible to gain a sense of context and perspective. Paul wrote the letter to the church in Philippi, while he was in prison in Rome. What was Paul’s crime? Sharing the good news of Jesus with people. Rather than despair because of his less than ideal situation, Paul gained a fresh perspective on how to rebound and gain new ground in his life’s work. Here are two sets of verses in Philippians that really speak to me:
Now I want you to know, brothers and sisters, that what has happened to me has actually served to advance the gospel. As a result, it has become clear throughout the whole palace guard and to everyone else that I am in chains for Christ. And because of my chains, most of the brothers and sisters have become confident in the Lord and dare all the more to proclaim the gospel without fear. (Philippians 1:12-14; NIV)
I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength (Philippians 4:12-13; NIV).
Paul’s context was by no means ideal. He really did know what it was like to live in want (take a look at his recollection of unbelievable suffering in living with and for Jesus elsewhere in the New Testament; 2 Corinthians 11:23-29; NIV). For Paul, it was a privilege to identify with Jesus in his suffering. Paul did not minimize his trials or maximize them to the point of losing his bearings. Rather, he looked to Jesus to provide him with the right amount of strength and grace to thrive in his time of need.
Like Paul, I have the opportunity to lean into Jesus and rely on him to give me strength no matter the situation. But will I?
If I am looking for an ideal context in which there is no suffering and pain, I will be greatly disappointed. If I demand of God that Christopher and our family only experience plenty, I will despair. But if I look to God to give us the strength to keep going and perspective to see how heaven is at work in our hellish ordeal, I will rejoice as Christopher’s pulse keeps beating, his legs keep kicking, and his brain keeps stimulating in pursuit of healing.
Well, I’ve finished with my literary range-of-motion activity for today, but not with trying to gain perspective and sense of context. Thank you for helping Christopher, our family, and me find our bearings. Like Nancy, Peter, Ed, and our health care heroes, you’ve been incredible fellow travelers in our pursuit of meaningful recovery.
For the full range of updates on Christopher and our unfathomable journey on life support, please go to this page. Thank you.