Tuesday, April 29, 2008

Thoughts--Dignity with a chronic illness

"Do you know anything about multiple sclerosis?"
"Only what I've read...I had a patient...who had it...But she was great. She didn't let anything stop her. Even using a walker. She danced with her walker."
"Christ, I hope that doesn't happen to my mom...It's like what you said about her being so into her dignity...she'd feel like she could never go out of the house."

--J. Mitchard, The Breakdown Lane

The Breakdown Laneis a new Jacquelin Mitchard book that deals with a bright, vibrant woman who is diagnosed with MS at the same time her husband leaves her. She has three kids. She's a ballet dancer. She's used to having it all together. She has a certain image she presents to people.

The above excerpt is from a conversation her son is having with a old friend of Julianne's (the mom). And the part about dignity certainly rang true to me, even though CF and MS are vastly different things.

For me, it was oxygen. I knew I would never leave the house if I was ever on oxygen therapy (other than at night, when it didn't matter...I was 23, I wasn't married, who cared?). There was no way that would happen. I was the go-getter, the one who organized, who planned, who did everything. Oxygen so didn't jive with that image. Plus, my friends didn't like using the handicapped placard. How would they deal with a twenty-something who lugged around and oxygen tank?

I did just about everything else--I went out with the port accessed, I went to school with PICCs and on IV therapy, etc.But I always covered it up, and I never told anyone unless they reallyneeded to know. Pity was not high on my list of desirable emotions. And nothing said poor kid to me more than the emaciated CFer on oxygen therapy.

When the Cleveland Clinic suggested I start in about a year before my transplant, I freaked out so much I called my CF clinic, who was Not Pleased with this development and took the clinic people to the woodshed. I just hated the entire idea of being tethered to something that would so visibly demonstrate the lack of ability my body had to take care of itself. I didn't want pity AT ALL. That was verboten. Totally.

Thankfully we never got to that point--I only did nighttime supplemental oxygen before my transplant.

Dignity is very important when you've got a chronic illness. It's one of the only things you can control--how other people see you, or remember you. Certain people see it all--they hold your hair when you vomit, they know you don't eat, they help you to the bathroom, they change the IV dressing. But this is a pretty elite circle. Not everyone can handle it. And even if you think some people can, you might not want to let them in anyway. I wanted my friends to keep a certain image, or impression, of me. Is this all mentally healthy? I don't know. But it's how I handled it.

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