When Brent and Jaime Johnson learned that their infant son, Jack, was suffering from a mutation on gene TUBB3, they were flooded with a confusing mix of emotions. At first, there was overwhelming worry and sadness. These feelings soon shifted to fear, as the Johnsons began to question just how they would manage the lifelong trials that parenting a son with Jack’s unique challenges — which included blindness, cerebral palsy, microcephaly, and severe developmental delays — would require.
The first few years were indeed rough. The Johnsons did what they had to do, just to get by: they navigated a myriad of doctors’ visits. They applied for, and eventually were rejected by, government-aid programs that claimed they made too much to qualify for assistance. They sought the perfect school program to meet their son’s unique challenges.
But after a while, “getting by” became a little more manageable. And then, gradually, their perspective shifted — a complete about-face from the worry, fear, and despair that had surrounded Jack’s diagnosis: Despite having to re-imagine their future with a child who would require constant care, the Johnsons began to see Jack’s diagnosis as an opportunity — not something they just had to survive. An opportunity to strengthen their family, an opportunity to seek out other families contending with similar disabilities, and an unexpected chance to connect with their community and raise awareness. They began to see that their own family struggle was an occasion to help others who were also suffering. They were reinvigorated with a new sense of devotion and drive.
The outcomes of trauma
What makes ordinary people like Brent and Jaime Johnson surface from the chaotic whirlpool of crisis, loss, or devastation with a sense of new and extraordinary possibility? How do some individuals find themselves “changed for the better” on the other side of suffering? It seems impossible to those of us who have not endured such trauma, but for those people who experience a phenomenon known as post-traumatic growth (PTG), as the Johnsons have, that’s exactly what can happen.
While you may not have heard of PTG, you probably do know about post-traumatic stress disorder, or PTSD, a mental health condition that can affect those who have been through major trauma after the ordeal is over. While there was no universal name for the disorder until the 1980s, the distressed psychological and emotional state triggered by traumatic events — war, the death of a loved one, serious disability — has been well documented throughout history. Poetry and stories dating back to Shakespeare’s time (and even earlier) talk of soldiers who returned home with unshakable images of battle, mothers who lingered in a life-long state of paralyzing grief after losing a child, and other tales of “shell shock” or “delayed reactions.”
In the aftermath of the Vietnam War, psychiatrists noted the enduring aftereffects of battle among soldiers, even observing that those who had been exposed to the harsher elements of the conflict were more likely to have issues with drug or alcohol abuse. As funding and research grew, the statistics and information about the experience of PTSD became more widely understood. According to the National Center for PTSD, “about seven or eight out of every hundred people will experience PTSD at some point in their lives.”
But PTG, which is less talked about, takes a different, almost opposite path to PTSD, where the person experiences a new sense of vitality, appreciation, or purpose. In short: once processed, trauma can open up a new horizon for some people. Trauma comes in many forms, and can damage the brain in various ways, but for some people like the Johnsons, it has led to something meaningful and fruitful.
Surprisingly, PTG is more common than PTSD
Jim Rendon, the author of Upside, The New Science of Post Traumatic Growth, writes in Time that post-traumatic growth occurs far more often in the wake of trauma than PTSD: “Studies have found that more than half of all trauma survivors report positive change — far more than report the much better-known post-traumatic stress disorder.” PTG has likely been around just as long as post-traumatic stress disorder, and was studied in the 1970s and ’80s, but garnered less academic and scientific attention than PTSD.
In the 1970s, psychiatrist William Sledge (now a professor at Yale) set out to interview veterans who had been captured as aviators in Vietnam. He found himself astounded by the conversations he was having with men who had endured horrific torture. As Dr. Sledge details in Rendon’s book, “At first I thought I had cotton in my ears or something,” he recalled after speaking with the prisoners of war (POWs). “The things they told me didn’t make much sense. They had a hard time, they were clear about that. But so often the former prisoners would say things like, ‘I kind of miss it. It was an intense experience. I learned a lot.’”
While it seems counter-intuitive that torture and trauma could be catalysts for learning, self-awareness and change, (and “missing torture” doesn’t sound healthy at all), 30 years of psychological research have overwhelmingly shown that post-traumatic growth is very real, very powerful — and very common. Indeed, research indicates that, depending on the circumstances, 30 to 70 percent of survivors of various traumatic events report experiencing at least one aspect of post-traumatic growth.
Post-traumatic growth can occur in five ways
Building on Sledge’s body of research, Lawrence G. Calhoun and Richard G. Tedeschi, from the University of North Carolina at Charlotte, dug deeper, and identified five key areas that are common markers in individuals who experience post-traumatic growth. Not everyone experiences all five — one or two are sufficient for evidence of PTG, according to Calhoun and Tedeschi.
Most often, people who experience PTG unexpectedly perceive new opportunities that have developed from the challenges they have endured, opening up possibilities that they had never considered before the traumatic event.
Survivors of grief or trauma may also find that their relationships with other people change for the better. Perhaps this manifests in a renewed connection with family members or friends, or a sense of unity with others in the community or the world at large — particularly with those who have also endured hardship and loss.
Others have identified a change in their own self-awareness, remarking that having lived through such challenging times altered their perception of their own strength. Calhoun and Tedeschi liken this to the survivor adopting an indefatigable mantra that they use to overcome even the smallest battles: “Nothing I will ever face could compare to the struggles I have already survived.”
Appreciation for life and all of its small joys are a fourth area of growth that the researchers have identified in those who experience PTG. People are more likely to “stop and smell the roses,” so to speak.
And finally, a fifth aspect of change is in the spiritual and religious realm. Many people find a transformed or expanded sense of faith in the aftermath of a trauma, as a result of post traumatic growth.
But PTG and PTSD can also go hand in hand
Jim Rendon cautions that there is no precise science to how post-traumatic growth works: “It’s not exactly the same, for everyone.” He’s interviewed dozens of trauma survivors and notes that the journey to growth varies by individual.
Rendon also notes that post traumatic growth and post-traumatic stress disorder often go hand and hand. “There is no finite process to either phenomenon” — a person can still be grieving but may also be growing. An individual may suffer flashbacks from the trauma they have endured, but they may still be forging new relationships, or renewing their sense of faith. A parent may be challenged by raising a child with a severe disability, but may still be empowered by the community that they find themselves suddenly — even unwillingly — thrust into. There is no exact timetable, no precise blueprint for how post traumatic growth unfolds.
As for the Johnsons, as they contend with the life-changing diagnosis of their son and a lifetime of post-traumatic growth, they look at the world through a unique lens of sobering reality and unwavering optimism. “We thought we had our life all planned out. We finished school, bought a house and knew we wanted to start our own family. Growing up, you dream of having your own kids — you never dream of having a special kid. Our life is very challenging, but we find ways to keep us going. ”
After the initial — very painful — adjustment period, one of the ways the couple did that is by starting Giving Songs, a charitable organization that provides desperately needed resources, such as the outfitting of vehicles with wheelchair lifts, to families with legally blind, multi-disabled children. When Brent Johnson discovered that music soothed Jack when he was in pain, he married his passion for song with his desire to help the disabled community.
From there, he says, the transition from helping his own family in the wake of a terrifying diagnosis to helping others, too, was simple. “We [believe] that most people want to be part of something that is heartfelt, genuine, and selfless — so we’ve met a lot of cool people and with each family Giving Songs assists, we’ve discovered resources that otherwise we wouldn’t know about. We wouldn’t choose to have a little boy with challenges, but it is safe to say that neither of us would trade the perspective that this little boy has given us. We wake up each day with a genuine appreciation for the small stuff … the important stuff.
And that personal growth makes all the difference. “We have the choice to wake up and be sad each day, or find ways to be happy and enjoy each smile and laugh. We appreciate every time the two of us are able to go out on a date. We appreciate when all of us are able to spend time together and participate in the same activities. It has become a life of challenge, depth, meaning, friendship and love.”
And today we celebrate...