I hadn’t really decided on the subject of my blog until this assignment. I think I want to write about my journey after hearing (2.5 years ago) that I have a rare, incurable brain disease (Familial Idiopathic Basil Ganglia Calcification, or Fahr’s disease).
It is an insidious beast and the symptoms vary from individual to individual. The primary symptoms for me have been cognitive deterioration, which will eventually lead to dementia. I also am having all sorts of balance issues.
I can forget I have it and then Boom! something happens that reminds me. It is very devious this way.
I’m in a study at NIH because no one fully understands the disease. They are growing me in a petrie dish in the bowels of the NIH building (which is ginormous). Does that scare you? It should.
So I think my blog will be about my experience with the disease because I rely on my brain so much and hearing that it is defective has been very difficult. I also would like to help others with some coping strategies that I have developed.
So I’m thinking of the first blog post here in my newly minted blog (Fahr’s Girl or something like that):
How To Digest That You Are (Literally) Losing Your Mind
7 Ways To Cope When You Get a Health Diagnosis That Derails Your Life
How To Receive Disturbing News of a Brain Disease (Clicking Your Heels Three Times and Repeating “There’s No Place Like Home” Doesn’t Work) ===> Is this one a little bit too related to American culture (The Wizard of Oz)?
How To Hear “Rare, Incurable Brain Disease” Without Screaming and Clawing Your Face
5 Incisive Things to Ask When Hearing a Diagnosis of Brain Disease (Other Than “Can We Do This Later?”)
12 Ways To Cast a Forceful Spell On Your Neurologist To Render Her Mute
11 Ways To Cast a Potent Spell On Your Neurologist (And Make It All Go Away)
How to Receive a Grim Diagnosis of Fahr’s Disease Without Whimpering Pathetically
How To Woman Up and Confront a Formidable Brain Disease (Those Boxing Lessons Won’t Help)
3 Ways Hear “Rare, Incurable Brain Disease” (Not By Feigning Wax In your Ears)
How To Cope With Fahr’s Disease Diagnosis When You Rather Like Your Brain
7 Ways to Receive the Unsavory Diagnosis of Fahr’s Disease Without Curling Into a Ball And Rocking In the Corner