Narrative Note

Well my original plan was to make daily AIP Neuro-assessment entries for one full year... but the plan has changed.
I began feeling like the rote nature of the templated daily entries wasn't as expressive as I like to be... I started feeling like documenting was just another daily chore...no depth..boring...
Then I got a call from my father... "The Oncologist said dad had two to four weeks left to live"... that came like a "sucker punch" to the gut!
At first I used denial to cope... then I packed my bags and it was off to New York...where I was blessed to spend the last 17 days of his life helping him navigate the transition from this world to the next. My last (and final) two templated entries were made during the initial days of my stay with dad.

Any "spiritual" uncertainty I felt prior to this experience...
disappeared as I gained insight into death and the dying process.

Dad didn't want to go yet...he was only 59 and wanted more time...
during his last 5 days...dad stayed right on the very edge of this world and the next...as if straddling the two...one leg ice cold...and one leg blazing hot...no food...no water...a body consumed by ammonia and other noxious toxins...yet a strong will to stay connected with the ones he loved... medically his lab values were off the chart... medically there is no comprehensible way that he could remain coherent... he lay in the hospital bed unmoved...breathing in ways that triggered our anxiety...after hours of silent disconnect...dad would "pop-in" at just the right moment...puckering up for a kiss from his loving wife...vocalizing words of endearment in response to personal whispers and gentle touches...then on December 7Th he left this world completely.

For me...
Spirituality, Medicine and Emotion are now "all tangled-up"... in my mind...in my "heart"... in my very "soul".


The Impact of a Porphyria Diagnosis

The very moment that my father's hospital bed was delivered, I received a telephone call... my parents' DNA testing had been completed...the results were in...
Dad had AIP!
So many feelings and thoughts were speeding through my mind that day...
Why hadn't his doctors ever tested him?
He had taken so many, many medications that had made is health status worse and in relation his life shorter (he had seizure disorder due to lesions on his brain)... If he had been diagnosed earlier he would have made different treatment choices and been much healthier.
I was very emotional and my own AIP was in a colicky state.

Today...after digesting it all for a few weeks...
I accept that we are all human, and therefore we are all mortal...
nothing can change that...
The RN in me still feels strongly that physicians have a responsibility to improve their knowledge deficit when it comes to Porphyria...
Porphyria Diagnostic Testing...
Porphyria Medical Case Management...
and Porphyria Treatment.

So no more templated AIP entries... only descriptive entries that use words like brush strokes to paint the picture of my meaning.