I am not a martyr

I read this great post the other day about Media and Resiliency.  Her point was that all you hear in the media is "despite his/her disability, he/she did ___" and that isn't always realistic with chronic illness.  You never hear stories of how much a disability changed a person and how much they CAN'T do.

This morning, I briefly changed my radio station from Christmas music to NPR.  I caught the end of a story of a woman with a heart defect and all the AMAZING things she could do (like go to school).  Don't get me wrong, I think it's great that she's able to overcome her health issues to live a normal life, but I am almost certain that she has bad days, horrible days even that no one wants to talk about. 

Before I got sick I was a teacher.  And before that I worked as a parent advocate and paralegal in a law firm.  I knew disability law and interventions and would happily engage others in a conversation about ADHD and appropriate learning strategies.  Before I got sick, I built a 750 square foot deck with my husband, and we resodded our entire lawn, including laying so much topsoil it took over our driveway.  Before I got sick, I planned.  I had a year-long plan and a five-year plan and could imagine my life into my eighties.  Dan and I could go out to dinner.  I enjoyed a glass of wine with dinner.  I joked.  We played Dance Dance Revolution at night.  We laughed. 

That is not my life anymore.  I can't drink wine.  Going out to dinner is a gamble.  I am bothered by the low-lights, so any nice restaurant is almost immediately rejected.  But I also get dizzy cooking, which is something I also used to love.  There is no way I could build a deck.  And I can barely remember the name of the law I used to spend so much time researching.  I can't work out much.  I'm not sure I can do yoga because of the up and down, movement that causes dizziness.  I can barely play with my son on the floor because of the motion involved and the spinning that results. 

I don't want to be negative, and I'm afraid talking about the things I can't do makes me sound like a whiner.  But really, shouldn't we talk about these things?  Shouldn't we recognize the limits that chronic illness puts on our life?  If the only stories that are ever shared are how we persevere, then no one will ever understand how truly serious this illness, or any chronic illness, can be. 

Sure I want to be seen as strong, but I have just as many low moments where I want to scream and cry and stomp my feet about how unfair this is.  I'm tired of the portrayal of those who live with illness as martyrs.  We aren't.  We're just people, trying to get through the damn day.