The Beast

There is a beast inside
With no where and yet so many places to hide 
Slowly but constantly evolving 
Only to undergo more loss and more and more twisting  
The Beatles happily sing twist and shout 
If only they knew how much twisting makes us want to pout
The people in Princess Diaries exclaim their love for their beloved country Genovea
Oh how much I despise my dystonia 

If you are unfamiliar with Princess Diaries I highly recommend watching both films or search YouTube for “Princess Diaries Genova national anthem” and after watching the clip you’ll understand my reference - just imagine a group of dystonia patients united and singing in frustration about their twisting bodies instead of joy for their country!
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It has been quite some time since I last updated my website and blog. In my last post “Cope, Control, Concentrate” in August 2022, I acknowledged that my dystonia was possibly intensifying which has unfortunately and definitely been proven very true. In that same post in August 2022, I also teased that I had huge news which was a wonderful consulting position that I held for close to a year. I really enjoyed my time serving as an alternative and augmentative communication (AAC) consultant for Temple University’s TechOWL. I also loved having the opportunity to share my story and present to my largest audience yet in the summer of 2023 as a part of Temple’s AAC Speaker Series which was available worldwide. Following my presentation, I received one of the sweetest e-mails from a mother all the way in Malaysia with a young daughter who also has dystonia, cerebral palsy and trouble communicating. Since my time with Temple University’s TechOWL, my dystonia has continued to intensify as well as some other related health challenges but as Taylor Swift sings/shouts in her song Karma “Ask me what I learned from all those years / Ask me what I earned from all those tears / Ask me why so many fade, but I'm still here / (I’m still, I'm still here)”!!!

My most active form of social media is Goodreads and I invite you to follow me on there if you’re also a book lover and are on Goodreads. My all time favorite book is still My Perfect Imperfections by Jalpa Williby and out of the 80 books I listened to in 2024 my favorite one was Only the Beautiful by Susan Meissner.  I recently listened to Maybe Now (book 2 of Maybe Someday series) by Colleen Hoover and I can honestly say it was the first book of hers that I truly loved - and would like to give her character Maggie in that book a thank you for inspiring part of this post as well as Lily in My Perfect Imperfections and Rosie in Only the Beautiful.