It’s not like I knew my life was headed for cataclysmic change. Monday, October 24th was a morning like any other morning in 2016. Teach a 9AM class at Lipscomb University then workout for an hour or two. Fitness and nutrition had become part of my identity. I was sixty years old and in the best shape of my adult life. I felt great. Which is why I was so surprised to wake up with a headache.
I didn’t even bother taking Ibuprofen. In an hour the headache would be gone. It wasn’t. It stayed with me all day and night at precisely the same intensity. With each passing day, the pain remained the same. Very intense. Highly irritating. No variation.
On the morning of November 4th, things got worse. I felt so bad I couldn’t get out of bed. I canceled my cardio and weights session. New symptoms had appeared. My head pulsed loud and unrelenting. The pounding caused my eyes to jump in rhythm. I was having something akin to a power brown-out in my left ear. Like a flickering light, it was shutting on and off. Specific sound frequencies bothered me. My pulse spiked at random. I had a full body, micro-trembling feeling as if I were vibrating. My face was a minefield of twitches firing off. Spasms moved up and down my legs. My whole body felt like it wanted to steer left all the time. Like leaning into a curve. I was fatigued and mentally off. When I wasn’t thinking unclearly, I wasn’t thinking at all. I kept saying, “I’m not right.” Through it all, the headache remained. Not headaches. All one headache, all the time.
I tried to stay working, willing myself to remain positive around students and colleagues at Lipscomb University (where I was the Director of the School of Music). Our family doctor referred me to a neurologist. I was thoroughly questioned, poked and scanned. I consulted with several additional specialists, including an Epstein-Barr Virus expert at the National Institutes of Health. The only bit of quantitative data they could find was white blood cells and protein in my spinal fluid and elevated norepinephrine. As the neurologist famously said, “I know you have something, and it is vexing to me.”
Though I was eventually given pain medication (after two months), it had little to no effect on the headache. In some ways, the drugs and attending brain fog made it worse. It’s hard to teach or meet with prospective students and their parents when you can’t put sentences together.
After 120 days of a single intractable headache, daily, unnerving passages of crazy had become my new norm. A Ten on the headache scale is a truly mind-bending experience. My mouth pushed out grunts in rhythm. I thought I was dying. I begged God to make it stop.
On March 8thof 2017, Andi and I flew to Mayo Clinic in Scottsdale, Arizona. I had a 3½ hour consultation with an integrative medicine specialist. Unlike every other doctor I had seen, this one was willing to venture a diagnosis. My central nervous system had been severely compromised. The reason I felt like I was coming apart, is that I was.
He explained that the sympathetic component of my fight or flight response was stuck on – something called Dysautonomia or Autonomic Nervous System Dysfunction. He put it like this, “You’re hypervigilant – always alert for danger. Your brain and central nervous system are refusing to go into rest mode. It thinks there’s a saber-toothed tiger in the room with you – all the time, everywhere.”
He talked about something called Central Sensitization, a condition of the nervous system associated with the development and maintenance of chronic pain. When central sensitization occurs, the nervous system goes through a process called “wind-up” and gets regulated in a persistent state of high reactivity. This is not tissue related. The brain is the genesis of the headache pain based solely on past trauma and past and present stress triggers. This diagnosis also explained my other symptoms, including ear issues (hyperacusis). As with PTSD, my brain was creating sound sensitivities that had nothing to do with my ears. They were real and painful (and selective) sensitivities, but they were not tissue related.
The doctor asked if I needed to work. Could I quit my job at Lipscomb University or take a leave of absence? No, I don’t need to work, though I do need to because I’m the head of the School of Music. He asked, do you want to get better?
This doctor read me like a book. He explained how my lifetime of mystery illnesses, recurrences of what I thought was Epstein-Barr virus, the 100-day headache I’d had several years back, vertigo, anxiety attacks, working till I was sick then going to bed for a week just so I could begin the cycle again – all of this, were storylines in a single drama. Now, through some perfect storm of triggers, I was experiencing the mother of all manifestations of this one overarching illness, a complete central nervous system meltdown. My body had kept the score, and I was losing. A week in bed wasn’t going to fix me this time. I’d used up all the resilience allotted to me.
The doctor diagramed a multi-faceted plan for recovery. This included anti-depressants, alternative therapies such as acupuncture, massage, biofeedback, EMDR and Reiki, dietary supplements, mindfulness and breathing exercises. My workout regimen would have to change. Cardio and weights, always pushing through pain to higher goals, was hurting and not helping. Walking would do just fine. He stressed the importance of family, talk therapy, spiritual life, nutrition, sleep, and in general, a life made of more than work. “Did I have a hobby or a pet?” He asked. Adding, “Perhaps I could get one or more.”
All in all, I would have to slow the tempo down, concentrate on these forms of self-care and community, and in a phrase, “unlearn my pain.”
I came back to Nashville, grateful, and hopeful that my headache and accompanying symptoms would one day be gone. I took a leave of absence from the university and worked my new, self-care program, and for several months the headache was less severe, and some of the attending symptoms disappeared. Things were looking up. Yet, even with such good progress, I had no way of predicting the dark tunnel that lay ahead.
Through the process of treatment, I came to understand that some or all of my illness was triggered by the stress of my new vocation as a university professor and director of a music program, our move from the Art House to a new home near campus, and a neighbor in the house directly behind ours.
In 2014 I was hired as a consultant to create a contemporary music curriculum for Lipscomb University in Nashville. The idea was for me to do a deep dive into what’s given me a sustainable career for four decades, and then turn the findings into a Bachelor’s degree in music. I love doing this kind of short-term intensive analysis and problem -solving. The consultancy led to becoming the director of the new program, and eventually the director of the entire School of Music, and the overseer of a new Lipscomb property, the Sound Emporium studios.
While I loved teaching the students and the friendship of a few open-hearted colleagues, the work put me face to face with an unforeseen nemesis: institutional bureaucracy. After a career of being in charge creatively and financially, I was now at the mercy of ever-shifting boundaries, budgets, and plans. By October of 2015, I was sick with what I thought to be an Epstein Barr Virus flare-up. I resigned my position, and then quickly took it back when the Dean graciously reshaped my commitments.
When we left the Art House property for a lovely, urban house a mile from the university, we imagined a quieter, simpler life. My work aside, I saw the move as a chance for Andi to realign with her writing and recover from decades of hospitality work. Her calling to hospitality is genuine, and she was a creative, warm-hearted host to thousands of people who came through our home. Yet, both of us had peaked from too-muchness. We longed for a private home where we could enter a new season of life and grow closer as a couple. It didn’t happen. Leadership at a university produced the opposite result. Looking back now, I can see that Andi and I had little time to reflect on, even grieve over our move from the Art House, a home God used in remarkable ways. We’d traded a great meaning-maker for a house. We were both unhappy, and too often saw only the negative in circumstance and each other. This was not us. We were in trouble.
In our new neighborhood, there’s an alley separating our house from the back of our neighbor’s. Shortly after moving in, I was disappointed to find out that our back neighbor was always yelling. Again, not the peace we hoped for. But worse than that, he would go into fits of rage, swearing and belittling his wife and children. All of this happening in their open garage or in the alley, right outside our bedroom window. There was no possible way to not hear it. His anger and screaming voice were terrorizing. Yes to his poor family, but to me too. I felt like it was happening to me.
As part of my headache therapy, I began a treatment known as EMDR or Eye Movement Desensitization and Reprocessing. It was initially designed to alleviate the distress associated with traumatic memories and is often prescribed for people with PTSD. EMDR helps the brain unlearn its pain, allowing for it to activate its natural healing ability. This is all about the science of brain plasticity.
There’s a landmark study that was sponsored by Kaiser (a healthcare giant) and the Center for Disease Control. It’s called the Adverse Childhood Experience Study, often referred to as ACEs Too High. There are ten types of childhood trauma measured in the ACE Study. Five are personal: physical abuse, verbal abuse, sexual abuse, physical neglect, and emotional neglect. Five are related to family: an alcoholic parent (any alcohol or drug abuse), domestic violence against the mother, a family member in jail, a family member diagnosed with a mental illness, and the absence of a parent through divorce, death or abandonment. There are, of course, many other types of childhood and adult trauma. These ten were the dominant ones in this particular study of childhood trauma. For each trauma you’ve experienced, you receive a point. Ten being the highest. See: https://acestoohigh.com/got-your-ace-score/
The study found a stunning link between childhood trauma and chronic diseases, as well as social and emotional problems. In short, toxic stress and trauma change a child’s developing brain. It can turn your mind into a hyper-vigilance factory. It can make you think you’re not alive unless you’re doing everything in your power to keep yourself safe and moving forward.
Though my ACEs are quite high, there’s been a positive flipside for me. My resilience scores are even higher. Its evidence of why I didn’t meet the mother of all central nervous system crashes sooner. It was in me, ready to blow anytime and often leaking out, but my chronic resilience was keeping it from entirely incapacitating me.
Through EMDR therapy I faced my deepest and darkest traumas. I located my triggers. While I received some immediate physical relief, it mostly wrecked me and made me crazier than I’ve ever been. I grieved things I never thoroughly grieved or gave myself license to. I found my anger and lashed out, casting blame on Andi and others. Day after day I felt a deep, unrelenting sadness. And for the first time in my life, I let myself feel the full weight of my child, teenager self. I allowed myself to fail, not be strong. I faced the unfiltered me.
Much has been made of our marriage at various times over the last few decades. By us and by others. Together since fifteen, married at eighteen and nineteen. Teenage romance and still married after forty-four years? A miracle! That sort of thing. Mythological in proportion. The whole truth? Less triumphant.
Andi and I lived through things between the ages of fifteen and twenty-five that have always needed acknowledgment and grieving. Sure, we had talked about some of it. We’d been to therapists and filled up notebooks in recovery groups. The unexpected call to follow Jesus in the early 1980s had immediate and immeasurable, positive effect on our lives. We were swept up in the mercy and forgiveness of God, and so very grateful. Spending any more time going back seemed like an insult to the whole concept of redemption and new humanity in Christ. Wasn’t Jesus going to restore the years the locust had eaten?
Perhaps so. But, if you’ve got stories living in your brain that you fear thinking about for even one second, the pest of trauma is still crunching away at your insides. So it was with me. Though I was, as the hymn proclaims, “In the everlasting arms of Jesus,” I was no less in need of a savior. More than ever. More than when I first believed. And I wasn’t alone. What was happening to me was happening to Andi. For better or for worse – mostly worse. I was processing. Communicating poorly. Disassociating. In phenomenal, headache pain.
And because of this, we were not unlike a couple who suffers tragedy, something so weighty they can’t recover personally and so the marriage can’t either. For a moment we dangled over that cliff.
It was the worst possible time to have our unity divided. I was a child in a sixty-year-old man’s body. Some portion of every day was spent wrecked and in tears. My mother was dying in a memory care facility. An essential person in our lives and in the creation of the Art House had died. Chris Cornell, an artist I’d produced, took his own life. It seemed that everything had gone dark, yet it hadn’t. There was light.
At just the right time, our friends circled around us, and a couple’s therapist helped us talk. At just the right time we found each other again. Faith, hope, and love would have the final word – the greatest of these being love.
Today, we are experiencing a remarkable renaissance in our marriage and creative lives. Each of us able to say, this is what I hoped for, what I longed for. As painful as the headache has been, it didn’t set in motion a cataclysmic illness. Sure, it’s easy to steer the story there, but I’ve come to believe there’s more to it.
The headache is an alarm gone off to warn my mind and body of an army of intruders and thieves. I get their names. I hunt them down. I look them in the eyes and say, “Give me back what you took from me, back when I was so afraid.” And in the doing, I cooperate with what Jesus has had in mind all this time. “Peace I leave with you,” he says. “My peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.”