I was trying to explain my “hearing loss” to someone and realized there is such a massive spectrum of different hearing losses (and mine is far from traditional) that using the term “hearing loss” doesn’t really help explain my situation. I also realized if I described what I have as side effects from a coma and severe Traumatic Brain Injury that present as a severe hearing loss with distortions that might be a better explanation. I’m not sure any verbal explanation is really going to get my point across that my hearing is severely and permanently affected, but I want to try to save myself from the heartache when people don’t understand that what I am experiencing is more intense and all-consuming than a lot of cases of age-related hearing loss (in my opinion).
I understand that every hearing loss case is truly different… but my case is REALLY more Traumatic Brain Injury (TBI) than anything else. Hearing loss is a symptom of the brain injury for me and brain injury is really more of my primary injury in my case than anything else.
I also want to share some of the post I wrote for my local Hearing Loss Association of America (HLAA) about technology that I am using to help with my hearing. Because when you are left feeling like every day is a new battle (especially when you are battling your own brain) you have to arm yourself with tools.
Once I came up with the thought that living with the hearing complications from my TBI is like being at battle with my own brain, I couldn’t set aside that imagery. Like every battle, sometimes foes seem unmatched. For years after my TBI I felt bested by my brain. It was constantly doing things that it thought were good and helpful that were actually quite the opposite. When I was first out of the coma I was completely deaf. This lasted for over three months. Then when I did start to “hear” all sound was heavily distorted. In an attempt to illustrate how hard it was working to “hear”, my TBI brain overachieves and ALWAYS “hears” something by filtering silence as “woosh” from a white noise machine. Also, when I first started to hear sounds my brain gathered around 7-10 sounds and repeated them on a loop that I heard every second I was awake. Thankfully that stopped after roughly four months but my TBI brain is still TRYING SO HARD to hear that it still overcompensates. My brain overcompensates and I still hear the roar of a white noise machine at all times. This can get louder if I am in noisy environments or if I am feeling unwell. This used to really bother me but I have realized my battle with my brain is a long one and along with building up tolerance I am also getting creative.
Before the TBi I was a troubled sleeper who often suffered from insomnia. In order to sleep I had to be very comfortable. In college I used use a box fan that I would keep on when I slept. It sounded like a turbo jet and the continuous noise drowned out loud college life and lulled me to sleep. When I was out of college i graduated to using a sound machine. Right before the accident I had discovered there was a sound machine app on for my iPhone that allowed me to easily have it when I traveled. Now, recently I discovered that if I put earplugs in my ears when I fall asleep it’s like having a sound machine IN MY HEAD because the earplugs mean all I am hearing is the whiye noise FROM MY OWN HEAD! Honestly when you’re in a longterm battle like living with a brain injury that when you discover little things like this that you can use to your advantage it definitely is a WIN!
A Day in the Life of Someone with Hearing Loss Using Technology
I wrote about what technology I use to help with hearing loss (I wrote this for my Hearing Loss Association of America newsletter and blog). I have adapted that article/blog below to show you how I am using technology to feel empowered and not powerless in my hearing loss.
Smartwatch: Fossil 5e: Fossil website. Uses: vibrating alarm and text/weather alert notifications.
Television/Entertainment: I use an Apple TV (Apple website) because that makes an older TV I have a smart TV (meaning I can stream content from Netflix, Amazon Prime Video, Hulu, etc. and also throw content from the computer on the TV (this is how I watch podcasts transcribed). Other similar technology: Amazon Fire Stick, Google Chromecast. Uses: “watching” podcasts streamed to the TV from my browser.
Tools: Nest Video doorbell and Google Home Hub (Google Store link, the doorbell works with any mobile device too so you don’t need a Google Home Hub/Nest Hub display). This makes it so I can answer the doorbell by speaking to the person via a video feed that is sent to my phone, etc. I am able to read lips this way. Uses: Can safely answer the door by seeing video and reading lips.
Phone: A landline that offers operator transcription is my Captel. There are apps for smartphones that are similar.
ASL Pocket Sign App (available as an application for Android: Google Play Link and Apple: iTunes link). Uses: I am learning ASL so that when I go to events that offer ASL interpreters but no other accommodation for hearing loss, I will be able to understand the ASL.
Google Chrome (as a website browser on the computer) is able to do live captions. For now, you must use it on a computer and not a mobile device in order to get the live captions. Find out more about Chrome captions here: https://blog.google/products/chrome/live-caption-chrome/ Uses: Live caption videos, podcasts, and video conferencing.
Spotify is the website I use to stream podcasts (in order to get Chrome to live caption podcasts you have to stream podcasts through a website (not a podcast player like iTunes). Uses: I use the web version on Google chrome so podcasts are captioned.
Google Duo (for computer/web, for Android, for iOS). This is also an app but I use it on the web (using Google Chrome) in order to get live captions. Uses: A video conferencing website and application that I use to attend medical appointments virtually. I use the web version so I can use Google Chrome and have it live captioned.
Daily Doodle Weekly Project Review
This wasn’t a “Daily Doodle” but I created watercolor and pen art pieces for my Mom for Mother’s Day. I did two pieces for her and framed them with frames I got off Amazon. I keep amazing myself with my growth in my art. I am thinking up art projects and able to execute them which makes me very happy.