Amelia's Hyperacusis, Tinnitus & Chronic Pain Story

 

Hyperacusis And Me by : Amelia Does

I am a writer in London Ontario, Canada living with Hyperacusis, Tinnitus & Chronic Pain, and wanted to thank Dave for helping me to share my story.

I have been becoming increasingly sensitive through my whole life. I was the only child of two musicians, so right away there was sound. My parents traveled and played music at bars, and apparently I would go to sleep inside a large drum when no one was playing it. By the time I was a teen, around age 12, along with general teenage angst, I had a short bout of TMJ. My irritation with my parents, who had separated when I was 5, only seemed to grow. It is common for children at the dinner table to develop jaw tension and misophonia, which often stems from hating the sounds of the dinner table, like chewing. Or rather hating being forced to eat with family for whatever reason. 

I have been dealing with increasing Hyperacusis and Tinnitus for two decades now, I of course needed to wear ear plugs & headphones. Down the line I also ended up aquiring Complex Regional Pain Syndrome, I think because of having Hyperacusis for so long. My health worsened to the point where I could no longer use anything to protect my hearing sensitivity: no earplugs, no headphones of any kind, no sound machines, due to my CRPS possibly. Because of the shapes of my ear openings/canals, sounds can produce “extra” noises (similar to tinnitus) that for me can literally last for days. 

Regarding my CRPS, my body above my heart is always in pain, so much so that I can’t lie down, wear a hat or do many things I used to be able to do. Oh, and I can’t go out in the summer, at this time I am sensitive to the light and heat of our (increasingly intense) sun only on my head. 

So, where does all of this terror and horror lead a person? Into quiet, into solitude, into perhaps self-expression and activism. But without outlets, into one’s own head - which can be very challenging. 

I wish I was able to accept and embrace a smaller life. Before the pandemic I was a traveller, now I can’t even take the bus. As I am not able to wear a mask, I have some serious healing to do about how the pandemic restricted my life to sitting on a couch in daily agony.  

Well it did not kill me. I am creating new paths for myself, to regain my life. I am planning a conference on disability in London, Ontario, Canada for this fall. I want the community, who are so isolated and vulnerable, to come together, meet each other, share resources and build esteem and strength. 

The gifts my illness has brought me do not make it worth it in any way. It did not have to be this way. But I have become a kinder, more gentle, more responsible, less selfish person. I am clearer on who I am and what my needs are. I have learned to treat people better, to make the right decisions about my social life, and as a result I have very good people in my life. Years ago I had no friends. I know how to offer encouragement and understanding and how to value other people. I am becoming less judgemental, and eventually, more patient. 

Thank you for listening to my story.