It is a beautiful day. Mary and her husband, Joe, are enjoying a leisurely stroll and decide to cross the street. In an instant their lives are permanently changed. Mary is struck by a car and suffers a serious acquired brain injury. She is rushed to a nearby hospital and undergoes a craniotomy and evacuation of her brain bleed.
Following surgery she suffers from a seizure and requires a breathing tube, also known as a tracheostomy. This is the just the beginning of Mary and her family's long and arduous journey. Mary is cared for in multiple hospitals and rehabilitation facilities before finally returning home.
It has been four months since a car hit Mary. She is seated in a small office with a speech language pathologist at an in-patient rehabilitation center for an evaluation. Mary is visibly confused and frightened, but she cannot convey this with words. She is suffering from aphasia, a disorder leading to trouble talking, reading, writing, and understanding what others are saying. It is difficult for her to focus for longer than a few minutes at a time; her memory is significantly impaired. She cannot understand where she is, and more importantly why she is not at home. Mary is tearful and frustrated as she tries to make sense of her situation. She still does not know she has a brain injury, nothing is adding up.
It has been six months since Mary's brain injury and she is being discharged home. She has increased independence, but still requires 24-hour assistance and continued therapy. Mary is fortunate that her husband and close friend have helped find the best care possible to continue her journey, because it is a lifelong one. Brain injury does not end when a patient leaves the hospital. That is just the beginning.
It has been two years since Mary's accident; she and Joe stop at the rehabilitation center to say "Hello." She is much better at expressing herself, although she continues to occasionally say a word she does not intend to use. She has made vast improvements in her language and thinking skills. Mary recognizes many staff members and is able to recall the room she stayed in during her admission. When asked, she remembers frustration at not being able to complete tasks/follow directions and said "I tried to remember what they told me to do" and "I remember a lot of things I did." She went on to say that at that time, "I didn't know what to do."
Mary was asked what she thought was important for people to know during Brain Injury Awareness month. She said that survivors should know, "You don't know everything now, but with time it will get better and you will be thankful for therapy". She added, it took 2 years but "my brain has come back . . . the doctor says I'm getting better and better every time he sees me." For the professionals working with those who have had brain injuries, Mary has words of encouragement "though it's hard to see people struggling, with time they get better." Mary's husband is thankful that he was able to find a facility for Mary to continue the healing process after her stay in acute rehabilitation.
Mary is just one of the more than 12 million Americans living with the impact of acquired brain injury. An acquired brain injury, such as a stroke (CVA), aneurysm, tumor, infection, anoxia or traumatic brain injury (TBI) can result in a myriad of impairments such as difficulty with talking, thinking, movement, independence, bathing, dressing, driving, working, and social skills. The journey of recovery after brain injury is often a long, difficult road and for many acquired brain injury survivors and their families, life will never be the same.
So how can someone support persons who have had a brain injury and their families? The staff and survivors at Mentis Ohio, a local rehabilitation center, provided the following suggestions:
When you are interacting with someone who has had an acquired brain injury and their family or caregiver, talk directly to the survivor, not just the person who is accompanying them. Imagine people having a conversation about you as if you weren't there.
Do not assume that someone has reduced intelligence solely based on his or her ability to speak.
Do not raise your voice to speak with someone who has difficulty speaking, understanding or remembering unless they indicate hearing is difficult.
An acquired brain injury does not automatically mean someone will have a physical disability; sometimes the difficulties are invisible, like trouble with memory or attention.
Be patient; often a person may just need extra time to process information and respond.
Survivors ask you to remember that they are not defined by their injury. "We are still people, still human beings. We can still think. I am capable.give me a chance."
Offer time to listen, talk and provide respite to family and caregivers. Encourage them to take time for themselves.
Educate yourself about brain injury and available resources.
Staff and survivors at Mentis Ohio are recognizing Brain Injury Awareness Month by providing education to community organizations, making and wearing jewelry and T-shirts featuring green, the color for Brain Injury Awareness, and attending a Northeast Ohio Brain Injury Foundation (NEOBIF) 2017 Brain Injury Advocacy & Awareness Event. You can help increase national awareness by using the hash tag #NotAloneinBrainInjury.
Visit The Brain Injury of America's website at www.biausa.org for more information.
This article was submitted by Steffany Wechter, Speech Language Pathologist (or CCC-SLP) & Denise Simcox, Speech Language Pathologist, Certified Brain Injury Specialist Trainer & Clinical Coordinator (or CCC-SLP, CBIST).