Sunday, August 12, 2007

Defining Self Post-Diagnosis Pt 2

Queli has a post up about defining self post diagnosis. This one has been my struggle of late. I am 8 months post surgery, and in the throes of a mid-mid life crisis that any maudlin poet would envy.

Pre-diagnosis, I had studied theater professionally and was a trained pastry chef. Two years ago I left NYC and moved closer to my family because I just wasn't feeling very well, and needed a better support system. When the Chiari was diagnosed, everyone who was close to me seemed to have their worlds turned upside down. I'd been "sick" since my late teens, with episodes going father back..some linked to confirmed auto immune disease, some unexplained..until we learned about Chiari and syringomyelia.

I then entered into the realm of a "brain surgery patient" one in which I've been settling into for the past 8 months. There was an unexpectedly difficult surgery, and a physical recovery which went slower than I was told, and the emotional recovery I am still going through. And I find myself asking.."Who am I now?"

I am not the same person.

I will never BE the same person. For one, I am minus the bunny stomping pain headaches and myriad of bizarre symptoms, plus I have that awesome scar running down my neck. I'm gleefully torturing my physical and occupational therapist twice weekly, but I don't know if I'll ever have the same stamina that made working in a professional kitchen possible. And I don't even know if I have that drive anymore.

My journey lately has been a reclamation of self, and a moving away from my biggest definer being brain surgery ( though that's still my trump card when anyone questions me. Try it..they have no comeback). I'm finding that the fear and overwhelming awareness of being someone with a brain malformation is not what I want the biggest impact in my life to have been. I am not a parent, I am not a spouse, so my sense of impact on the lives of those around me is limited in a different way.

I've gone through my life thus far as seeing myself as more of an artist..a chef, an actor, a blogger and aspiring writer, a person with a need to tell some sort of story, illicet some sort of emotional response out of others, and a pathological need to be understood. And suddenly, I am not scared of life anymore, I'm simply scared of not living it enough.

I do not claim that my story has more merit, my experiences more worth, or that my journey has been harder. I do claim that the catalyst for searching and self inventory has been different than those without tonsillar herniation may have had. Sometimes, in all this, I feel very alone. I can google my condition, I can download abstracts and PDFs, I can peruse support groups, and again I can learn what I am in term of a medical standpoint. But I still can't figure out who I am now.

I'd love to hear what others have experienced with this, and how their lives changed for the better, how their choices changed..not from a physical limitation, but from an emotional upheaval.


BillyBob said...

I tried to comment on your other blog, but found it impossible. Hepatic encephalopathy is a lot like brain compression. Anyway, I find your blog facinating, and you are sooo cute! You make me laugh. I am married to a Chiarian, Sharon at My blog is
I wish the best for you. Sharon's story is all on youtube video on her blog. She was decompressed in June. Take care, Puglet.

Puglet said... my commenting system being badly behaved? Please come and read anytime, even if you can't comment. I am of the firm belief that other than Dilaudid, laughter is indeed the best medicine.