Having a Life When You Have an Illness

It's funny, being in "show biz," how most of us who have a chronic illness are secretive about it (I was for years) and are in fact, usually more reliable than artists who don't have an illness.

Back in 2002, I got up and did a show after I'd just had a stroke. My left hand wasn't working. I just sucked it up, told some stories and jokes and thudded along on the guitar with the few notes I was able to hit. I'm very stubborn...

For years now, I've been swinging back and forth between the two extremes of being a hypochondriac ("I broke a nail! Oh Lord- it's the lupus!") to being in total denial ("I haven't been able to feel my foot for 3 days. It'll pass. It's just lupus.") I think (I hope) I've finally found a balance, where I am able to live my dreams and keep my health.

Sometimes I have to binge-sleep after several long, tough days of too much work and not enough sleep, but I'm able to stay healthy, off the immune suppressants, and be creative and live a full life.

The truth is, if I'd never gotten ill, I'd have never had the courage to leave the unrewarding but "safe" world of retail and pursue my secret (even to me) dreams of sharing my songs with the world.

So here's a one of my non-medical funny songs about relationships. Because I don't want my whole life to be about being sick or not being sick. There's more to me- more to all of us- than that.
 

What' So Bad About Lupus?

A friend asks: "Have you ever spoken to someone and told them you had Lupus only to have them say to you that they know someone who has it that that person is " in Perfect Health?" Then they look at you as if to ask what's wrong with you that you think its so bad. Its aggravating to say the least."

The first and most obvious answer is this: You can't be in perfect health and have a diagnosis of a chronic illness. That's just so obvious. If they were in perfect health, their diagnosis would be "perfect health." Not "lupus."

Secondly, you can't see lupus, so how do you know by looking at someone how healthy they are? Maybe you only see them on their good days, the ones when they are up, dressed, made up,. and out and about.

It reminds me of how we look at other people's relationships and think "oh their marriage is perfect." then we're stunned when they split up.

From Douay-Rheims Bible 2 Corinthians
For we dare not match, or compare ourselves with some, that commend themselves; but we measure ourselves by ourselves, and compare ourselves with ourselves.

To borrow some wisdom from 12-step programs, don't let this person live rent-free in your head. Ultimately what matters is being at peace with yourself and your choices. If you know you're doing what you need to do, and you believe you're living the best life you are able to give your particular case of lupus- we are all so different- then it really ultimately doesn't matter what this person thinks. Because they're not living with it.

You can get educational pamphlets from the Lupus Foundation or the Alliance for lupus research if you want to educate someone and have a piece of lit written by a third party, giving your point of view some credibility.

But if you want a short-term solution on how to shut this person up- and who wouldn't?- tell her "that's interesting. I know a person with lupus who had a stroke and kidney failure." (me, by the way).