You Must Change Your Mind
by Garry Prowe and Jessica Whitmore
The single most important element to successfully surviving a brain injury is learning to live with the inevitable mix of impairments—physical, cognitive, emotional, and/or behavioral—that accompany a major insult to the brain. This is true for the survivor as well as the people close to her. This is true on the first day of the survivor's recovery and every day thereafter, until she passes from this earth.
Recognizing and Learning to Live with Permanent Impairments
Jessica's automobile accident caused irreparable damage to her brain. A split second of inattention permanently transformed her in many ways. For Jessica to recover successfully from her injury, the most important thing she needed to do was to recognize and learn to live with her new impairments.
Professionally, Jessica could no longer work as the information management consultant who advised colleges and universities across the country. She could no longer be the cool, calm, and collected speaker at conferences, nor the multitasking expert in constant motion—simultaneously tapping on a keyboard, talking on the phone, meeting with a colleague.
In her personal life, Jessica—a lifelong animal activist—could no longer dream of participating in major animal rescue missions such as those that follow catastrophes such as hurricane Katrina.
This kind of permanent transformation is a disturbing, if not devastating, fact for both the survivor and those who love her to acknowledge. Yet if her recovery is to be successful, the person with a brain injury, as well as the important people in her life—spouses, parents, siblings, children, friends, and co-workers—must adapt to the grim reality that their survivor has been changed forever.
For Jessica, professionally, this meant giving up her job. She understands that she now can focus on only one activity at a time—sometimes two on a good day. She shudders at the thought of speaking to even a small group of strangers.
For Jessica, personally, this meant modifying her animal rescue ambitions. Today, she fosters stray animals at home and volunteers at a nearby monkey sanctuary.
For Garry, the caregiver, Jessica's TBI meant transforming the way he viewed Jessica and her capabilities. Garry, like all caregivers, had to recognize that Jessica suffers from permanent impairments. He had to understand how these impairments affect Jessica. And, he had to learn how to accommodate these impairments.
Learning to Live with Being Changed Forever
Recovering from a brain injury is an ongoing process. In a successful recovery, both survivors and caregivers clearly recognize and effectively adapt to the enduring consequences of a brain injury without frustration, anger, or resentment. The caregivers must always be aware that these changes are manifestations of the survivor's brain injury, not conscious choices, or failures of character.
This is far from easy. Just the other day, more than eight years after Jessica acquired her brain injury, Garry doubted her efforts as she helped him pay the monthly bills. We were updating a spreadsheet on our computer. We do this at least once a month. Garry was eager to complete this chore and return to writing this article. However, when Jessica began to wade through her notes on updating spreadsheets—for at least the 1,000th time—Garry's frustration overwhelmed his reason. He unjustly and robustly accused Jessica of being too lazy to take the time to learn to work with spreadsheets.
But it wasn't laziness on Jessica's part. Her inability to remember how to work with spreadsheets is due to a permanent cognitive impairment caused by her brain injury. After eight years, Garry still needs to be reminded, at times, that Jessica is doing the best she can.
Creating Conditions for Successful, Ongoing Recovery
We have seen far too many recoveries that are unsuccessful because the survivors' significant others—even their own families—are unable or unwilling to acknowledge and learn to live with the unwelcome changes brought about by their loved ones' brain injuries.
Our friend, George, for instance, is alienated from his family. They made little effort to understand his condition and continually accused him of malingering. "Why do you keep blaming your difficulties on something that happened years ago," they asked, one time too many.
George also received poor performance reviews at work because his petty-tyrant-of-a-boss refused to make the few accommodations George needed to be a productive employee.
George's story is heartbreaking. Far too often, misunderstood survivors live lonely, isolated existences, spending countless hours sitting home alone watching television, worrying about how to pay the rent.
You Must Change Your Mind
Jessica's recovery from her life-threatening, life-changing traumatic brain injury is, to date, mostly a success. This success is, in no small part, due to our recognition that Jessica was changed irrevocably. Without this understanding, we would have unreasonable expectations. We would be waiting for Jessica to return to the way she was before her accident. We would be setting goals that are unachievable.
Expecting a person with a brain injury to return to her previous state is a surefire way to fail. To succeed, you must change your expectations, or as we see it, "you must change your mind."
We would be grateful to hear from you. Together, we can make life easier for future survivors of brain injury and their caregivers.
Garry Prowe and Jessica Whitmore are writing a book titled We Changed Our Minds: Successfully Surviving a Brain Injury. This article is the first in a series that will cover many aspects of the recovery and rehabilitation from a brain injury. The purpose of the series is to examine the elements that contribute to a "successful" recovery from the perspective of both the survivors and their caregivers.
