Did you know March 1st begins brain injury awareness month? Me either. That is until it became something that changed my life and truly affected me and my life. Because of this, I want to spread the word and educate the world on it. Seems kind of silly since I am a Certified Health Educator and this was my life before, but I wasn’t as focused in the brain Injury world. I mean I worked with stroke patients at times, but it goes to show all that education and experience has nothing on actually being a brain Injury survivor. But that’s what I got from this brain injury, I mean yes I got a brain injury, but I got lucky and it didn’t ruin my life it just changed it a lot and also really changed what My passion is and my goal for the future with my degrees to put my time into the world of brain injury. I have to toot my own horn here too and say that realizing this has sparked me to make things happen and I started with a volunteer opportunity with OHSU Think first a brain injury prevention program and got a job with Emanuels Trauma Nurses Talk Tough prevention program. It may be entry level, but it’s what I needed for me for now and good things can come out of it.
To promote brain Injury awareness I do many different things. I share publicly about my brain injury and journey on Instagram. I show all the things good and bad and I connect with other TBI survivors and brain injury survivors to create community, to be someone people can connect to who understands a bit what they are going through. I connect with people from all different severity’s and outcomes of brain injury, I definitely try to be supportive and positive and help others see the positives in a hard ass situation.
I meet with brain injury survivors in real life and when I travel. I have had lunch with a Stroke survivor to develop friendship and community for something that can truly make you feel isolated. I have provided lots of resources and connected people to care in their community. I was very proficient at that before my injury and worked for Oregon Medicaid doing that, navigating the healthcare system for patients and providing health education. I can’t work full time now, but I can provide resources on my down time and provide community.
I work for a local Trauma Program and we do trauma prevention activity’s like distracted driver classes, victim impact panels, share the road safety classes, fall prevention and helmet clinics. All of these things that many people come to the class court ordered, can cause a brain injury. To yourself or someone else. So many TBIs are from car accidents. I am starting entry level because that’s what I need right now, but I am working for a program that I fully believe in and that I think is so important in our community.
I volunteer at OHSU Thinkfirst program as a Voice Of Impact. I speak in front of middle school and elementary school students being a voice of impact from a brain and spinal cord injury. I tell my story. I love it, I think it’s important and it’s closely related to what I used to do for a living as a health educator so it’s a good way to gain back skills I had pre brain injury.
I started a blog recently! This blog you’re reading. To share my story, my experiences and all things is life I have learned from. I want to create awareness about so many things I have learned from, but especially about brain injury. I somehow got extremely lucky through my back injury, concussions, traumatic brain injury, poor choices and more so I want to share with the world how I learned from it all and what I learned from it. It’s so important to me.
Living with a brain injury is no joke. Yes I look fine. And yes I got extremely lucky. But daily I struggle with so many things, so many things that I once took for granted. Simple things like being able to drive to go get a coffee, just being able to drive to go to the doctor, take my son to school, go to work and simple things like having the energy to take a shower or do my hair. Taking a shower requires me to sit for 30-60 minutes afterwards to rest. I rarely spend my energy to do my hair. When I do, then I don’t wash it for days and use dry shampoo. I struggle with my words, speech, knowing what to say. I struggle with my vision, even with therapy and new glasses I have vision problems and feel dizzy daily. I can’t work full time, so financially we have most definitely struggled. We currently are going back into debt after paying off all our credit cards because it cost me $200 every time I have vision therapy and $500-$600 a day for therapy for OT, PT and SLP. I pay out of pocket until I meet my $3500 deductible then it’s covered at 80%. And yes we still travel and still live our life which some won’t agree with, but we are paying all our bills and making life work, but taking time for ourselves and our family is a priority. Tomorrow is not guaranteed and we learned that, so we aren’t going to do nothing just to pay all our medical bills. We will just add them to our monthly bills. This week I will try to work 2 four hour shifts, two different days this week plus go to OT, PT and SLP 2 days this week, vision therapy one day and my sons school appointment as well. Because this is life. I will note how I feel and trying to work 2 four hour shifts might not happen again if it’s too much. Ya it’s only a 4 hour shift, but it takes 1.5-2 hours to get there one way and there is a lot of stimulation that it takes to do that. You are hearing things, seeing things and walking and all that takes a toll on my brain and energy. It also cost me money to take public transportation. A four hour shift turns into 7 hours with transportation. My husband will pick me up, but it’s at 9-10pm and he gets home from work at 4pm, my work is next to his work. So on days I work he drives over a 100 miles in order to go to work himself plus pick me up. But he does it to make it so I get home sooner and safely. And no I don’t have to work, but I want to work, it’s important to me and it helps me learn normal things to get back into the world. It also helps keep my mind sound and to not get depressed, it gives me a purpose. I still have a weak left side from stroke like symptoms. Sometimes when I want to do something, put something somewhere I physically can’t. I will know what I want to do, where I want to put something but physically can’t do it. Brain connections. The brain is fascinating. I no longer can do homework with my son and help him. I don’t understand it. So his father has to come take him to help him with homework. I’m sure there are so many more things I struggle with daily. But this is just a bit of it. Brain Injury changed our lives, but we are so grateful I still have life.
My memory was most affected. I lost most my short term memory. I don’t remember our wedding. Thank gosh we had a wedding video and pictures, I have been able to relive a lot of our wedding memories with my husband. From May-January each day I woke up daily not remembering the day before like the movie 50 first dates. It’s still not great, so I use a ton of tools learned in therapy for memory. Like using my phone calendar, a regular calendar, journaling every day and using shared google docs with my husband to remember where things are in our home. My memory is so bad, but I have so many tools that I use that support my memory and it is actually amazing since I use those tools to support my memory. Pictures also help jog my memory. My long term memory is iffy. That’s a big part of doing this blog, it helps me remember things and If not ask those who know to help me recreate the memories. I am lucky I was pretty organized before Injury and I have found journals and calendars from pre injury that I had and can look back on to help me remember.
From my experience with having a Traumatic Brain Injury, I have found a new purpose in my life. I am so grateful it lined up well with what I spent years studying in college, doing and that my profession and now purpose are so aligned. My goal is to take my life that I was given a second chance to live and make the best of it and promote brain injury awareness. It can happen to any of us, I am lucky in that mine was caused from doing what I loved. But so many aren’t as lucky and are doing simple, every day activities like driving, walking down the stairs, or they are a victim of violence when their TBI happened. I’m not angry this happened. Yes it sucks, but I’m alive and my goal is to share with the world about brain injury awareness. Below is all information on what a brain injury is from the BIAA, I copy and pasted it for you to read. I did not write what is below, but keep reading to learn more. I appreciate any comments if this was helpful, if you learned anything new or have a new awareness of Brain Injury month and the why. Thank you for reading.
What is a brain injury? Here is some information from the Brain Injury Association website @ https://www.biausa.org/public-affairs/public-awareness/news/biaa-celebrates-brain-injury-awareness-month
Vienna, Va. – Every March, the Brain Injury Association of America (BIAA) leads the nation in recognizing Brain Injury Awareness Month, a time to acknowledge and support the millions of Americans affected by brain injury. The theme for this year’s awareness campaign is Change Your Mind.
An acquired brain injury (ABI) is any injury to the brain that is not hereditary, congenital, degenerative, or induced by birth trauma. ABIs – from trauma, stroke, infectious diseases, and brain tumors – are a serious public health issue in the United States, where someone sustains a brain injury every nine seconds. According to available data, more than 5.3 million Americans live with brain injury-related disabilities at a cost exceeding $82 billion annually.
“For many, brain injury evolves into a chronic health condition that changes who they are and how they interact with the world,” offered Susan H. Connors, BIAA’s president and chief executive officer. “Raising awareness of the impact of brain injury and making sure people have access to the support they need is essential – not only in March, but throughout the year.”
The Change Your Mind campaign provides a platform for changing common misconceptions about brain injury, raising awareness about the incidence of brain injury and the needs of individuals who are injured, and offers tools to help advocate for access to care after brain injury. Information about Brain Injury Awareness Month, including educational material and downloadable collateral, is available at www.biausa.org/changeyourmind.
Individuals in need of information, resources, and support after brain injury may speak with a brain injury expert by contacting BIAA’s National Brain Injury Information Center (NBIIC) at 1-800-444-6443.
About the Brain Injury Association of America:
The Brain Injury Association of America is the country’s oldest and largest nationwide brain injury advocacy organization. Our mission is to advance awareness, research, treatment, and education and to improve the quality of life for all people affected by brain injury. We are dedicated to increasing access to quality health care and raising awareness and understanding of brain injury.