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Life Lines

© Karyn Moran Holton

Do you remember when you were omnipotent?

Back in the day, when you could fly with the use of a simple sheet tied round your shoulders? Do you remember being able to direct orchestras with drinking straws? When your bathmat was a raft, or even a flying carpet? When you could look someone in the eye and say "I can do that!" when you had never done "that" before?

I remember.

I used to walk down to the creek near my house, with my sister, and the two of us would explore the world of water, rocks, newts, fish and plants. We were invincible! We created cities, spoke to fairies and became Queens of the Universe with the aid of crowns of leaves. (Guess who got to be senior Queen!) Whatever we wanted....POOF! We had! We ate spearmint leaves, wild cherries and grapes, and never for a second worried about germs, poison or even an upset tummy. Even bugs and insects (avoided in front of others, with the obligatory screaming and other "girly" behavior) were fascinating and friendly.

This was back in my childhood. Back when I was healthy.

I was diagnosed with systemic lupus erythmatosus at the age of 28. SLE, or lupus, is a chronic progressive, systemic disease with no known cure at this time. What this means is that I will have to live with it for the rest of my life, I will always be on medications and have to have tests and doctor visits, and possible hospitalizations. Lupus will inflame and irritate my organs and body systems, damaging and possibly destroying them.

When I told my sister I had lupus, I didn't know exactly how to break the news. (Most people don't know what lupus is--did you?) I said, "By the way, what blood type are you?" After the expected strange look, she asked me why. Off handedly, I replied, "Oh, I just might need a kidney someday, so I'm sizing up who I have to be nice to!" After a long talk, and some tears and "Oh, wow!"s, we hugged, and I knew that my sister would always be my best friend and one of my main pillars of support for the rest of my life.

You can't plan a relationship like that. You can only hope for it.

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These days are dimmer than the green-gold-blue ones of my childhood. I am limited in what I can do with this body. My energy is carefully rationed, my range of motion is curtailed, and I am never sure what each new day is going to bring.

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