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Renee Aims

Blepharophimosis ptosis: The Rorschach Face.

Blepharophimosis ptosis: The Rorschach Face.


I have some odd mannerisms you might have noticed.


I was born without muscles to open my eyes!   It's called blepharophimosis ptosis.  It is extremely rare. I had full medical treatment – a muscle that allowed me to elevate my eyelids with my forehead, but they just "drifted" partly-shut.  That caused dry eye problems.  My eyes learned to automatically roll upwards, each time I blink and when I sleep.


Shutting the eyes is so important that, all my life, my body has (wow!) been re-purposing the lower facial muscles, neck muscles, even part of the tongue, to open and close the eyelids.  TRUE STORY!  Today I can squint, and move my eyelids a remarkable amount!  When did this happen?  It's not documented.  I believe I am documenting, for the first time ever, the true story of Blepharophimosis ptosis.


NOBODY NOTICES.  Not consciously.  But my expressions are often backwards, or complicated, or unusual.  This is like having a speech impediment that someone stops noticing in five minutes, or a few weeks.  But it is different.


EXPRESSIONS: The minor problem.  I can show you that my main smile muscles pull upwards in a way that resembles a sneer.  My "sadface" muscles pull sideways and look like a smile.  Fear looks like mirth.  My earliest recollections are of Mom angry and screaming, "You wipe that smirk off your face young lady!"  Stepfather furiously growling, "Do you think this is FUNNY young lady?  I am SERIOUS AS A HEART ATTACK."  Something about my face provokes authority figures into anger.  It doesn't look respectful enough, and no matter what my words or voice tone, they get madder and madder.  Police, principals, anyone who had the job of giving me a lecture became goaded and provoked into treating me incredibly angrily.  My face.  My lying face.


MICROEXPRESSIONS: The major problem. My microexpressions are completely insane.  Every single time I shift my focus, I make another ridiculously complicated, and often ugly or sad, microexpression.  This appears on film, or in groups.  I try and try but I cannot look normal on film.  My face can be seen to jerk spasmodically when I swallow, it can be seen making bizarre eye rolls, and I make peculiar microexpressions that convey complicated and confusing messages. I am considered completely worthless (by some) on camera.  My publishers dumped me like a hot potato after seeing video of me. 




Blepharophimosis ptosis is invisible.  Every friend I ever had swore a solemn oath that my face was fine and they would tell me if it wasn't.  Report after report is the same.  You can see perhaps one odd mannerism (although each of you report something different.)  Most people consciously cannot see that my face is very, very different, even when I tell them and show them.  This has baffled me my entire life, because I CAN SEE IT.  And so can any other person with blepharophimosis.  We recognize each other, oddly enough.

Blepharophimosis ptosis faces are beautiful. I am undertaking a campaign to bring us out into the light of day.  No more will we hermit in our houses, keep our faces down and glasses on, no longer will we suffer our invisible affliction.  We are going to be seen.  We are beautiful.


I found this via the youtube comment you left on a 'commercial'.

I don't have anything epic to say, but I've got BPES as well and just wanted to say that it was pretty fantastic to see someone else who has the same issue with facial expressions. I've spent decades, like you, getting myself into more trouble for something I don't always control or am even conscious of. And I never put too much thought into why - just assumed I'm a cranky bitch (which is also true...!) - but reading your entry and thinking about the same things I do... yep. Can probably thank BPES for that little gem in life as well.