Friday, April 17, 2015

So What?? (Part Three)

So if you're still with me, you've just absorbed the capsule history of my past half-century with Crohn's Disease, minus many of the nastier bits, like daily life on a bad day, or the really bad results of surgeries gone wrong.  Those things are even more off-topic than the brief history I've given.

The point of all of that detail has been to show you that, in large part, I have been defining myself in terms of my illness.  I have studied it as well as lived with it, and my life has in no small way revolved around the various and varied effectiveness or ineffectiveness of the many treatments, including this latest one, the infusion of Entyvio.

Here's the thing:  granted, I've only had the one treatment, but it seems to already be working.  Like flipping a switch.  I didn't even have much of a headache, the one noted side effect (apart from a fatal brain virus, progressive multifocal leukoencephalopathy, a viral infection with no known treatment, prevention or cure.  Not kidding.)

I woke up feeling, well, normal.  Without going into way too much detail, this morning has been the first normal morning I've had in a long, long time.

Funnily enough, I do still remember what it felt like to feel normal.  I still feel normal in my dreams, but truly, I have only felt it once in actual, real, waking life exactly once in the past fifty years.

I was going to my wife's family home for the first time, to meet her mom and sisters.  I had gone to my then-doctor and begged him for something, anything to get me through the week without having an attack from the Crohn's.  He put me on Prednisone for the trip, for the very first time, and it worked fantastically well.  I woke up on the trip with no pain, no problems, no bathroom issues.  We took my wife's sister and her family to Universal Studios in California and played all day.  Saw the original Bates Motel.  Saw the Black Lagoon.  Saw the Cecil B. DeMille Parting of the Red Sea.  Saw my wife in a spacesuit from "2001: A Space Odyssey."  It was brilliant.  And it was the last time I felt like a normal person.  Until today.

My dilemma, then, is this:  If this feeling lasts (and, oh, how I hope it does!) how do I begin to define myself now?

Please don't misunderstand.  I'm in no particular rush to get my hopes up, not after having them repeatedly dashed time and time again for the past five decades.  But if this works out, well, I am no longer my disease.  I will have to reinvent myself from scratch.  I'm not sure I know how to do that after all this time.

I'm really not.  

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