Tuesday, March 27, 2012

Hope Trumps Despair

Hope is the thing with feathers
That perches in the soul,
And sings a tune without the words,
And never stops at all.
--Emily Dickenson

(For those of you who subscribe, my apologies that you are receiving this twice. There was a technical error on my part earlier in the evening. The message is appropriate: Hope often sends me the same message more than once because I didn't get it the first time.)

Friday, March 23, 2012

A Confession

I have Crohn's disease.

I have tried draft after draft of how to get that simple sentence onto this (metaphorical) page, and the truth is that I've had trouble writing it because I've had great difficulty saying it for the past nine years.

I thought stating the facts was akin to signing an unholy contract. I was afraid that by calling it by its name, I was cursing my body and cutting myself off from a full, vibrant, and satisfying future. I thought that if I didn't own it, then it wouldn't own me.

I was given the diagnosis by a doctor who was not gifted with people skills. He spoke the words "incurable" and "for the rest of your life" in his detached, clinical voice and they hung in the air around me like thick clouds of smoke--distorting my view of reality with their haze and stifling my breath.

Maybe he also said "and can be managed with medication," but I can promise you that I did not hear any of those words that day. In fact, when I pressed him about how "normal" a life I would lead, he admitted that he didn't know any patients my age with Crohn's who were even able to bear children.

And the smoky haze thickened.

I didn't know how to integrate those words--that pronouncement--into my reality. So I simply shut my eyes and tried to forget that I ever heard them.

Though I never denied I was sick--and sick I was--I danced around the issue. I'd say, "Doctors don't agree about what's really going on with me" (because I wouldn't let another traditional doctor get close enough to me to confirm it). Or "I'm having some intestinal problems" (the understatement of the decade). Or my personal favorite "I'm getting it under control with a new diet" (which inevitably left me sicker, malnourished and once in the ER).

I couldn't face it. I couldn't bring myself to look it in the eyes and see it for what it was. It's amazing how those two little words--Crohn's disease--turned into this big, looming monster that taunted me in the dark and tortured me in the day.

The taunting and torturing waxed and waned until about a year ago. I finally admitted to myself that denying I had Crohn's disease wasn't getting me what I wanted; I wasn't getting better. So I pushed through every defense mechanism I had so carefully erected and planted myself in front of another doctor (this time one with kindness and compassion) and got started on a regimen of medication.

I also sat down and read every pamphlet on Crohn's disease that my doctor sent me home with, pamphlets I had spent years avoiding--afraid to even touch and hold them, as if the words themselves harbored contagions that would make my illness worse. Though my first instinct was to throw them away, I didn't. I read them through and acknowledged the value they had in bringing me out of denial, and I cried cleansing tears.

That night I admitted to myself that I wasn't just sick, I was sick with Crohn's. And, of course, instead of getting worse--as I always feared I would--my body actually began to heal.

I also made a decision. I decided that I was going to enjoy my life. I decided to divorce my belief that Crohn's disease was a predictor of my future. I decided I was going to have a good life in spite of Crohn's.

It would be an oversimplification if I ended the story there--as if by coming out of denial and deciding that I would lead a healthy, satisfying life that it became true. It hasn't been that simple or easy. But it has become my reality. I realize that I have decades in front of me, and no one can predict what they hold. But I can guarantee this: I'm going to be okay.

Sitting on my couch that night--with tears streaming down my cheeks--staring at words written about the thing that had caused me such overwhelming pain, I learned something. It's the reason I'm writing about this today.

I lived in denial for so long because it served as a great buffer between me and an even more familiar foe: Fear. And fear--like a looming monster--lives in the dark. It can't be exposed or expelled until it is brought into the light.

No one ever got over a fear by keeping it hidden. It just doesn't work that way. It needs to be aired out in the sunshine on the laundry line, flapping in the wind for all to see.

So instead of reinforcing my fear by shying away from a simple truth--I have Crohn's disease--I am bringing it out of the dark again.

I'm not going to deny that I'm still sometimes afraid. Afraid that by talking about Crohn's I'll open up a pandora's box of symptoms and emotions that I have been successful at keeping at bay. That somehow--superstitiously--putting it out there that I'm getting healthy will open the door for sickness to come in again.

But I'm pushing through. Because my house doesn't have room in it for looming monsters anymore. The only way to get free of fear's intimidation is to do the opposite of what it tries to influence me to do.

Fear says: "Things are going so well. You don't want to rock the boat. Just let things be the way they are. You don't need to tell people about your victories. Just hide them away. You'll keep them longer that way." Fear is a hoarder. And hoarders store and store up and they can never get enough.

So I'm resisting my urge to shut down and keep quiet. I am putting my truth out there: I have Crohn's disease. And it's not the end of the world.

That's my confession, and I'm not ashamed to admit I hope that by reading mine you'll be encouraged to make your own.

Maybe you don't need to publish it on the Internet, maybe you just need to whisper it to your own reflection in the mirror. Maybe you need to speak it to a friend, write it in an email, or shout it off a mountaintop. Whatever you do, just don't keep it in the dark.

Embrace your reality. Bring your fear into the daylight. Own your truth. Love your life, and (as the saying goes) it will love you right back.