March is Brain Injury Awareness Month
“The Not Alone campaign provides a platform for educating the general public about the incidence of brain injury and the needs of people with brain injuries and their families. The campaign also lends itself to outreach within the brain injury community to de-stigmatize the injury, empower those who have survived, and promote the many types of support that are available.” (http://www.biausa.org)
Education is key! In order to spread awareness about brain injury, it is vital that people understand what brain injury entails.
What is Brain Injury?
The Brain Injury Association’s (BIA) Brain Injury Facts and Statistics Fact Sheet provides definitions, typical causes of brain injury, and some statistics:
Acquired Brain Injury (ABI): any injury to the brain that is not hereditary, congenital, degenerative, or induced by birth trauma; typical causes include:
“More than 3.5 million children and adults sustain an acquired brain injury (ABI) each year. The total incidence is unknown”
“More than 12 million Americans live with the impact of ABI”
Traumatic Brain Injury (TBI): a subset of ABI and is caused by trauma to the brain from an external force; typical causes include:
“5.3 million Americans live with a long-term disability as a result of TBI”
“Males are more likely than females to sustain a TBI at any age”
“75% of traumatic brain injuries are classified as ‘mild’”
“Motor vehicle crashes and traffic-related incidences are the cause of 31.8% of TBI deaths”
Every person who experiences a brain injury will present in their own unique way. Below is a list of typical impacts that one may demonstrate, but it varies person to person based on factors such as: severity of the injury, cause of the injury, what part of the brain was affected by the injury, how long after the injury the person was diagnosed and treatment was started, as well as the person’s general health and age at the time of the injury.
General Impacts of Brain Injury:
Behavioral / Emotional:
Empowering Survivors. A most important piece of spreading awareness about brain injury comes directly from those who know brain injury best …The Survivors! In an effort to give a voice to those who desired to speak out and provide insight about living with brain injury, I developed an electronic survey through surveymonkey.com. This survey included three open-ended questions and was shared via Facebook in various groups that have a focus on brain injury awareness. A total of 41 people graciously provided responses to my questions, all of which will remain anonymous. Recorded below are the questions and a handful of responses.
What do you want the general public to know about surviving brain injury?
“It’s hard. Really hard losing the life you had. Always explaining why you can do somethings one day and not others. Having people not understand it.
ALL head injuries are unique.”
“No two cases are the same.”
“Just because we look find on the outside and we tend to put on a brave face, on the inside we are normally screaming and fighting for some normalcy that we had prior to our TBI.”
“Everyday is a battle.”
“That I am still me.”
“I wish people understood how tired I get doing simple things.”
“It’s bad, really bad, but there is hope.”
“I’m genuinely tired though not just a lazy me.”
“It’s an invisible injury and to look at me sitting I look ‘normal’
but my life is unrecognizable!”
“Our deficits are real and hamper our lives.”
“What a survivor needs is compassion, support from family and friends.”
“Recovery takes time. Somethings recover, while other things do not.”
“It’s the hardest thing I’ve ever endured.”
“When people say ‘survive’ it sounds like they lost a lot, but I didn’t!
I learned to value life.”
What do you wish someone had told you / what do you wish you knew sooner about surviving brain injury?
“Things will probably never be the same but that’s OK. I was told so often you will get better soon. Every step is important.”
“I wish that my doctors and family members would have been more honest with me from the beginning that this kind of injury is so life changing instead of telling me that I was going to get back to work, and being my old self in no time!”
“Accept the recovery process with a positive attitude.”
“Get involved in TBI survivor group(s) and research ways to increase brain function.”
“Survivors need people, not seclusion.”
“Everyday can be different.”
“Symptoms vary greatly.”
“Crying is normal. Sleeping is normal.”
“DON’T believe healthcare professionals (including occupational therapists) who portray recovery being ‘over’ after some period of time (6 mo, 1 year, etc.).”
“That it’s ok.”
“TBI recover is possible. I work. I live alone. I know when to take my meds. I care for myself. It just didn’t happen right away – took like 15 years.”
How important is a support system in your life? In what ways do you receive support / who is in your support system?
“It is THE most important thing. Emotional, physical (for the first yr) and a hf.”
“It’s so important to have someone that is patient and tries to understand.”
“My husband, kids and parents are my support.”
“Very important, the most important is your loved ones excepting it and being supportive.”
“My support team is a local group that meets once a month and my family.”
“Very important. To handle anxiety, fear and depression, as well as physical disabilities.”
“My new church family is my support system.”
“I have a big support online.”
“My support system is my family and coworkers.”
“My family was amazing. I wouldn’t have made it if not for them.”
“I belong to several groups on FB.”
Support Systems. A support system as defined by the Merriam-Webster dictionary is a network of people who provide an individual with practical or emotional support. A major goal of brain injury awareness is to increase public knowledge of organizations and resources available for support, amongst survivors and those who are on the journey with them.
Brain Injury Association of America (BIAA): This national organization’s mission is to advance awareness, research, treatment, and education and to improve the quality of life for all people affected by brain injury.
Visit http://www.biausa.org/ for more information
Brain Injury Association of Michigan (BIAMI): State association that provides direct support, information, resources, education and advocacy for people living with brain injury, their friends and family, professionals who provide research, treatment and services, and the general public. Each state has their own association.
Visit http://www.biami.org for more information about BIAMI
Visit http://www.biausa.org/state-affiliates.htm to locate another state
Brain Injury Association-Capital Area Chapter (BIA-Lansing Chapter): One of the chapters in Michigan. This group meets on the 1st Wednesday of the Month at 6:00pm. A typical meeting consists of an educational presentation and a group support session where individuals can share their stories, meet people in their area, and have meaningful conversation.
Visit http://www.biami.org/sglist for more information about BIA-Capital Area or for a complete list of support groups located in Michigan
American Brain Foundation: This foundation aims to brain researchers and donors together. Patient education resources, information about events, and reading resources (magazines, eNewsletters) can be found here.
Visit https://www.americanbrainfoundation.org/ for more information
Blogs: Read first hand experiences from people who are brain injury survivors, or create a blog entry of your own to share your story and inspire others!
Facebook: Join a group / page on Facebook. Connect with others around the country who may have similarities with you! Post thoughts, ideas, photos, encouragement, progress, good reads, resources, etc. Search for these pages on Facebook’s search bar:
‘Brain Injury Awareness’
‘Traumatic Brain Injury Support’
‘Moving Forward After Brain Injury’
‘Brain Injury Survivors’ Worldwide’
‘Brain Injury Network’
‘Brain Injury Stories’
Guest blog author: Melissa Byers, written March 21, 2017, as a Level II OT fieldwork student at O’Connor Occupational Therapy Services, PLLC, while attending Eastern Michigan University to obtain a combined Bachelor of Science and Master of Occupational Therapy degree. Her graduate research study “Hippotherapy: The Lived Experience of the Practitioner” was disseminated as a poster presentation at Eastern Michigan University’s Graduate Research Conference as well as the Lyla M. Spelbring Endowed Leadership and Conference in 2016.
For more information http://www.oconnorot.com/
The Celtic Maze pattern symbolizes the journey of life and the path of experience, & learning. It symbolizes that there are twists, and turns, the challenges and obstacles in life, but that there are always open doors.