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Jessica's Remarks

Posted Aug 24 2008 3:55pm
Remarks by Jess Howe

I am not going to tell you I am waiting for a cure for Lupus, because I am not waiting.

I am attempting to live.

I've had Systemic Lupus Erythematosis since 1986, when I was about ten. It was an awful year; it still rings in my memory as "bad year" anytime someone mentions that time. Back then, it was right at the start of the AIDS freak-out, so what did kids do but assume I had something like that. School was not fun.

We all have horrific stories: battle sagas, if you will. I have as many war wounds as a soldier in Iraq , and have fought for my life more times than some of them have. I'm not afraid to say that, because I honestly believe it's true.

Twenty years is a long time, though, so I won't give all the details of my illness battles. Like I said, I want to live. I've lost an eye, and some of the feeling in my fingers and toes; I've lost bits of my memory and the ability to do more math than simple stuff. I have pretty bad CNS Lupus now, which means the disease loves my brain and wreaks havok whenever it can. Even so, I want to LIVE, not "work towards a cure."

You see, I think it does all of us folk with chronic illnesses a disservice in a way to constantly be insisting "it must be cured." Sitting around waiting for that only makes me depressed, I know from experience. Since chronic illnesses are very complex, and often diagnosed improperly, and then there's the fact we don't even know the causes for certain, why be focused on that?

Why not teach others to live with what they have, even if it means a changing body?

That's what I've striven to do over the past years, and I believe it's kept me alive.

Right now, I'm dealing with new stuff. As I said earlier, I have neuropathy -- peripheral neuropathy, and now it's around my bladder too. It's very recent, though, so I haven't learned the newer adaptations I'll need to make. But over the past year I've learned to type with fingers that don't feel the right way all the time, and that yes I need a wheelchair sometimes.

Over time, I'll learn more. I'm determined -- I hate change, but I adapt well. I always have. There are illnesses for which yes, seeking out a cure is definitely worth it. But I believe that we of the chronic kind need to learn to adapt to what we have.

About the author: Jessica Howe has been a gung-ho proponent of this blog since day one. Her writing can be seen at
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