life with an ostomy. candid, not sugar-coated. empowered, not embarrassed.

Mar. 17, 2006

So everyone knows...

Last Sunday, still feeling somewhat hungover from the wedding the night before, I was interviewed about having Crohn's Disease and an ostomy. It was a phone interview, and it will air on a local community radio station by the end of March.

At the time I was doing the interview, I was lying on my mother's bed looking out onto the ocean, sipping coffee and, despite the mild headache, feeling quite relaxed. I was comfortable and it felt easy to talk. I found myself taking about 5-10 minutes to answer each question, and I felt like I was only scratching the surface.

How do you condense 1.5 decades of pain, invasive diagnostic procedures, gas, blood, diarrhea, hospitalizations, malnourishment, retarded puberty, medications and their side effects, intenstinal scarring, cessation of periods, doctors' appointments, home-based naso-gastric tube feeds, surgery, fistulas, accidents, lessons learned about nutrition and anxiety, and all the accompanying emotions and effects on family and relationships in less than one hour?

I didn't realize that I was going to have so much to talk about, and that I was going to feel that okay about talking. Who would've thought that just four years ago I was sure I would only ever talk about my ostomy with a handful of select people- those who I knew wouldn't turn away from me. Now I'm okay with telling anyone who happens to be tuned into a particular radio frequency, not to mention keeping this blog.

It feels good to confront the shame head-on like that. I said things like "removal of my rectum" and "when gas came out of the hole in my abdomen for the first time" without flinching. I'm sure it will be challenging to listen to. I'll get self-conscious about all the people who, in my mind, could be laughing uncomfortably as they listen in their cars, and I'll wonder how many peoples' too much information barriers I'll be crossing.

Fuck it. This stuff doesn't get talked about enough. And I'm always game for getting myself into norm-challenging situations.

I'll post the audio on this blog when it's ready.


Anonymous tj said...

know what...? You rock gal, I dig you, can really put it into words. I'va had UC for nine years,.. it has been hell, but you give me hope! thanx!

11:45 a.m., May 08, 2006


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