This is the #1 edition of our new My Misophonia Story series. This week features Tory (53) from the USA. Each week we’ll feature a new reader story, so if you’d like to share yours, please drop us a line. Tory, take it away…
Where are you from?
I’m from the east coast of the USA, but I’ve always been bicoastal, and now I live on the west coast
What do you do for a living?
I am currently unemployed, but my entire career has been focused on medical research, working with disabled and elderly, usually for the government, but sometimes I have been a consultant for families.
What are you passionate about / what are your hobbies?
I am passionate about the arts. I am a published poet, a speaker at the occasional literature symposium, and I have worked in mixed media, collage and performance.
How old were you when you first realised you had an issue with certain sounds?
As early as can be remembered. I have a specific memory of losing composure over my mother and her husband snapping their chewing gum. I was about ten.
When did you first find out it was called misophonia?
What are your 3 biggest triggers?
Public transportation, any meal I share with my husband and repetitive sounds like a phone ring or an alarm. I go bonkers and usually need a sedative if I get too worked up.
Do you have any other sensory quirks?
I can tell when women are menstruating. I can smell systemic yeast infections, many smells I wish I could not smell.
I also have ocular migraine. This involves seeing colors and shapes that others do not see. Grids of color, and at night I am awakened by black and white visions of flowers opening and opening… for about 15 minutes at a time. I’ve also seen the world covered in glitter!
I also see colors differently than others. I am extremely sensitive to elastic and cannot wear certain fabrics. I am easily overstimulated, and I avoid certain activities that might be a problem for me. Because of the constancy of these problems, I do take two anti-epileptic medications. My skin is very sensitive as well, and I must keep my nails short and filed so I don’t bloody myself with phantom itches while I’m asleep.
Have you told other people about your misophonia and if so what was their reaction?
People don’t need to be told. My family knows, my close friends know, and even people I don’t know will end up knowing because it’s frequent and a bit dramatic.
What’s your funniest/most ridiculous misophonia-related moment?
At its worst, hearing someone nearby eating a sandwich had me feeling and tasting like I was eating the sandwich as well.
Once, I heard a man emptying his sinuses in the gutter and I vomited.
What helps you to cope with your misophonia?
Aside from the meds I take to relieve my sensory overload, I have gained a bit of peace through an advanced form of yogic breathing. I also wear noise cancelling headphones and use ear plugs, and carry those with me along with my medical supplies.
To avoid smelling what I’d rather not smell, I usually carry a handkerchief with a small amount of neroli on it to block out the smell of whatever it might be.
What are you misophonic superpowers?
I am an autism whisperer. When I worked on a task force, I was able to extinguish bad behaviors by scanning a room, rearranging furniture, and training staff on how to stop a tantrum by understanding the delicate nature of antecedents for my autism friends.
I also have been able to adapt the schedules of elderly people in ways others couldn’t figure before I suggested these small tweaks, to make life easier.
I’ve helped many many families increase quality of life for their atypical family member(s).
Because I’ve always been different, I believe my own troubles have made me especially sensitive to what can be changed to make people’s lives better. My poems are always lively, and I have a great ability to lift the spirits of others. I can often help people deal with dying, losing their independence, and help people learn to cope with chronic illness. I know how to do these things without down playing the trouble… but actually teach people to use their trouble as a way to inform themselves on how to think their way around the trouble.
What’s the single most useful piece of misophonia related advice you’ve learnt?
Know yourself and prepare according to this knowledge.
What’s your very best life hack?
Accept yourself, and accommodate.
Is there anything else you’d like to share with your fellow misophones?
Oh dear, no. Just know someone else can’t bear finger tapping, machine sounds, leg shaking, the smell of a coat that has remnants of mothballs and barbecue, and I understand the agony of highly reflective surfaces. I once had anxiety smelling a McDonald;s (I hadn’t started carrying my emergency handkerchief) that made it impossible to leave the car…
All these troubles have a way to cope in tandem. These coping skills are always available, and never hard to do. Thank goodness.
And finally! The quick fire round…
Favourite place you’ve visited:
I love London
I like most anarchy-punk, especially the work of Rudimentary Peni. I also like freak folk, but the favorite song changes.
I like science fiction and fantasy
Favourite work of art:
Most Obsessional Art, Art Brut,etc
5 things you couldn’t live without:
Headphones, earplugs, sun glasses, naps, props