What “Inspiration Porn” Is and Why We Fight It

Jennifer and I have known each other for several years. We both have medical issues, including one in common, a neurological condition called hydrocephalus. She will be writing about her own experiences here. Mine are somewhat different from hers. I’m 49 and was diagnosed with hydrocephalus at 3 weeks old. This condition is invisible to most naked eyes looking at me. I don’t have a noticeably large head. I can walk. I can speak. I don’t even consider myself disabled. I drive, have a college degree, have been married 25 years to my best friend, and have two grown children.

I do, however, have a multitude of “hidden” disabilities/medical conditions that make my daily life more difficult. A recent diagnosis of herniated disc in my lower right back has added to this, but I am still ambulatory–for which I am eternally grateful–and I think I live very well, but some subtle things have tipped some observant people that I struggle in ways most people don’t. I can’t walk for long periods of time because of the pain. I have always had a limp, for reasons yet unknown. I also have dealt with epilepsy most of my life, as well as Celiac Disease, and estrogen dominance (with all of its lovely effects). People who have met me will notice my limp or see me at a hydrocephalus conference and tell me I’m so brave for traveling by myself. Then they can’t believe I have biological children. Then they’re shocked to hear that my 24 year old daughter is a cum laude graduate with a double degree. They learn that my 21 year old son is autistic…and then it starts:

“You’re such an inspiration!” “I could never cope with all of that!” “Honestly, how do you manage?” “You’re such a saint!”

Umm…no. Here’s the truth: I’m just like you. I’m not Super Woman. I’m not magic. I scream, I cry, I throw things, I get angry, I get frustrated…and then I walk on and do what needs doing.

I won’t ever say it’s easy, because it’s not. There are times I look back in amazement that I’m still alive. There are times when I really don’t think I can cope anymore. Then there are times when I laugh all day at my son’s humor or how I couldn’t find my car in a hospital parking lot for over an hour…after I’ve cried in frustration over my horrible memory and all the things about autism and “hydro” that piss me off.

Is it courageous? Maybe, but it’s my life. If I help someone else figure out how to deal, that’s cool, too, but I don’t exist for the sole purpose of helping you realize how great your life is because mine sucks. It actually doesn’t. I have a wonderful marriage, two terrific kids, and I do almost all of what I want to do in this life. Really, it’s not so bad. 🙂