By Marilyn Lash, MSW
You don’t get over a brain injury like you do the flu or even minor surgery. What can survivors and families expect for recovery? Why do so many struggle with acceptance of the changes and losses in their lives.
No one knows these issues more than the individuals who are survivors of brain injury. This issue of Brain Injury Bulletin features their voices about the meaning of recovery and acceptance.
Myth of Recovery
Learning to Live with Yourself after Brain Injury,is not an easy or quick process. Aptly the title of his book, Jeff Sebell says, “There are some hard realities we must face. First and foremost, there is no such thing as recovery. No one recovers from brain injury the way someone recovers from an illness. You don’t get released from the hospital, hug your family, and return to work vowing to put your brain injury in the rear view mirror. You don’t pick up where you left off in your life as though nothing happened.
You just don’t…. Life will not be the same as it was before…nor should it be. Being able to adapt to, and accept, drastic changes in life is an important skill. It means rather than looking at the time post-brain injury as recovery, or an attempt to return to a former life and pick up your routine where you left off, it’s all about discovery. It’s about learning what and who you have become and fitting into the world now.”
Hilary Zayed also avoids using the word recovery. Instead she talks about recalculating her life after her brain injury. Rather than a straight uphill climb of progress, she describes her recovery process as “…a spiral of getting better and getting worse. After the trauma of recovery, there is an expectation that you are fixed; and can move on. You are expected to believe the universe lies before your unfamiliar new feet. With strategies in hand, a game plan in mind, and friends and family for support, you set off into the unknown. However, you soon learn you need to recalculate.” This means finding new paths and new directions.
Trying a different way when old strategies no longer work. “Repurposing a life and finding a new direction can throw you in and out of a spiral of depression, anxiety, and needing help again…. This time of readjustment and recalculating brings up questions like, ‘Can I do this alone?’” She has learned to say to herself, “Stay strong and move forward.” Recalculating led her to a new journey of reinventing her self, perhaps her most important discovery.
Carole Starr explores the concept of acceptance further in her book, To Root and To Rise – Accepting Brain Injury. You’ve probably heard these questions or asked them yourself: What does accepting my brain injury really mean? What does acceptance look like? And most importantly, How do you know when you’ve accepted your injury?
She explains that, “Acceptance is acknowledging the reality of a situation. It’s about recognizing the difference between what can be changed and what can’t. It’s being able to say – without any internal resistance – ‘It is what it is’.
Starr learned that acceptance isn’t a one-time event. Rather, it happens in small pieces over time. It doesn’t mean liking what has happened to you, nor does it mean you are giving up hope of making progress. Rather than trying to get back to the person you were – the “old me” – it’s about becoming the new me. Acceptance is not the end stage but the beginning of your journey into transitioning into living with a brain injury. Acceptance is about transitioning from mournfully looking back at what was to embracing what is.
Families Join Survivors
Brain injury is a family event; it affects everyone in the family. Relationships change along with altered hopes and dreams. From her experience as a caregiving spouse and her studies on grief and loss, Janelle Breese Biagioni views adjustment and acceptance, not as a destination, but as a process for survivors and families with three stages.
This means reflect on the life you had before the injury, whether you are a survivor or family member. What was important to you in that life? What did you value? What brought meaning to your life? As you think back, reflect on your relationships, your interests, your work, your friendships, your hobbies….the list goes on.
This is the hard part. It means letting go of parts of your previous life that no longer exist. You may be leaving behind concrete things like a job, college or travel. It may be relationships that have changed. It may be activities and interests that you let go.
Only once you say hello and goodbye to your past can you now say hello to the person you’ve become. This is the beginning of who you are now and how your life now is.
As you travel your journey toward acceptance, remember you are not alone. Others have shared your journey and still more will join you.
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