I mentioned earlier I would be writing about closed captioning in this my next monthly essay. However I’m postponing that post to write about how March is Brain Injury Awareness Month and the national organization Brain Injury Association of America (BIAA). The theme for the 2018-2020 campaign for BIAA is “Change Your Mind.” Since I experienced a Traumatic Brain Injury (TBI) myself in 2016 after being in an accident, I wanted to discuss brain injury in this March essay. (I also wrote about it on my Saturday post on my pop culture blog.)
Before the accident and my TBI I knew very little about brain injury, so I certainly understand why “Change Your Mind” is an important message. Please visit the campaign website here to learn more. #changeyourmind
I feel like I am constantly learning about myself and what the body can do as I progress on my brain injury story. For me, my injury happened nearly three years ago. I was in a car accident and in a coma for three weeks. At that time a lot of uncertainty surrounded my condition and my survival. My family was hearing “brain injury” and “Traumatic Brain Injury” but for them there was a lot of uncertainty surrounding those terms. They didn’t know if I survived what kind of life I would be able to sustain. They probably wouldn’t have imagined I’d be sitting here today blogging about it!! I certainly think that’s where #changeyourmind comes in. I think oftentimes the average person hears Brain Injury and almost thinks “Brain Dead.” (Because that’s a common term/phrase the average person has heard before regarding injured brains.)
Well, as a survivor of a TBI, I’m here to tell you brain injury has many shapes and forms. Like most medical conditions, it varies for everyone. I’m not a medical professional so I won’t speak on that because I don’t want to spread misinformation. Everyone’s path to recovery is certainly different. Especially since a lot of people like myself get their TBI when they’re injured in an accident and receive a lot of other injuries that make a person’s path to recovery different.
I ended up with injuries to my brain that first presented as complete deafness and now present as extreme hearing loss.
For me, these issues I describe with my hearing (or my brain’s ability or inability to process sound) is the number one thing that I’m finding most challenging to cope with. I have seen great doctors, audiologists and speech language pathologists. I’ve worn hearing aids in both ears and now after further testing by my audiologist realized it did me little good to wear the hearing aid on the left ear too (where the distortion presents the most).
Now I’ve decided to go back to my research background (I have a Master’s in Library and Information Science) and do a little research on the connection between TBI and hearing. I did a little preliminary sleuthing today and found this article. I have yet to find someone who either has a TBI or has treated someone with it who has experienced my same level of distortion and hearing issues (that I know of).
When I was in the accident, I was in a coma for 3 weeks. Once I came out of the coma my brain injury presented the aural difficulties as complete deafness. I was completely non-hearing for a period of 3-4 months. I lip read (which I didn’t know how to do until this happened… I just taught myself out of necessity). I also began to learn American Sign Language (ASL) which unfortunately I’ve forgotten a lot of because my loved ones are hearing so I communicate with them by lip reading.
After those first 3-4 months of non-hearing my hearing started to come back slowly but still incredibly distorted. When my brain started to let me “hear” again it was very selective and it ended up gathering around 7 sounds and repeating them on a non-stop loop. I called this my “sound loop.” I would “hear” this “sound loop” on repeat every second I was awake. In addition to the sound loop all voices (even my own and even a dog’s bark) were (and still are) heavily distorted. And I also heard ( and still do) something akin to the “white noise” from a white noise sound machine (again at all times). While the “sound loop” dropped off after I had a viral flu and a very high fever (roughly 3-4 months after I started to “hear” again) the white noise and voice distortion remain. My brain also can’t process music. It registers as more metal on metal noise. This has improved slightly in that now I can process singular instruments played at a medium to soft volume. They don’t sound like I know they should. Instead, they sound horribly out of tune.
As I discussed in my pop culture blog (I blow off steam writing about the pop culture I consume with my parents) I can’t live independently since the TBI. So I am an adult who lives with her parents. Honestly, we get along quite well and have plenty in common. They and my sister and her two kids are my fiercest advocates. We’ll get through this. Together. #changeyourmind
I wrote about this on my Pop Culture Blog as well. (BIAA also promoted it on Twitter and Facebook and recommended the post and this graphic I made to their followers!) Click on the graphic below to go to my post:
Again, I really recommend you check out the Brain Injury Association of America (BIAA).
Check out their campaign page for “Change Your Mind.” Download a PDF by the BIAA on public policy and TBI.
Thank you for reading my personal account on living with TBI. It’s one of those things you never think will happen to YOU. So when it does it truly rocks your world. And because my TBI makes me a little insular; I sometimes forget that my TBI rocks the world of my loved ones too.