AJ Fiedler

I’ve suffered multiple TBIs/concussions through my life, but the most impactful one occurred when I was in university a few years ago. It was a simple clumsy accident, resulting in my dismissal from the ER without any scans or treatment plans. My partner was not allowed to come with me to the bed, and due to being concussed, I wasn’t able to appropriately advocate for myself and proper treatment.

A few weeks later, I realised something was wrong. I was able to see a specialist, and thanks to his documentation of my symptoms, I was able to receive assistance from my university for a problem I never would have foreseen: I’d somehow lost most of my reading literacy. Using screen readers and audio notes, I was able to finish out the semester, but I ended up dropping out because I never fully recovered that capability. Even writing this, I can’t proofread it due to the format of the text. I can’t read restaurant menus, or physical books, or anything with dense paragraphs without assistance. My specialist nor any of my therapists were able to figure out exactly why this occurred, only assuming that it was due to the accrual of brain injury over my life to that point.

If I could’ve done anything differently, I would have argued to have my partner with me to help me properly advocate for myself when I was unable to. If I had demanded to get the scans they told me they were going to run, the problem may have been treated earlier, and I may have been able to make a better recovery. The outcome may have been the same regardless, but I will never know now. If you ever find yourself in that position, please do your best to document everything you need to say and your goals from your visit beforehand, so you can have a script to pull from, and do not let them dismiss your concerns no matter how small they may be. If possible, having someone with you to advocate for you is great to have.