Janelle Meraz Hooper is an award-winning independent author with five books published in the novel, romance, and short story genres. She is from Oklahoma but now lives in Washington State. Her website is: www.JanelleMerazHooper.com. You can also read her short stories, essays, and other writings at The Blue Rose Bouquet. She loves to hear from her readers and can be reached at: JanelleMHooper@comcast.net.
Chronic-Illness.org invites you to read about Janelle Meraz Hooper’s systemic lupus and arthritis experience:
Every time one of my relatives commented to my mother that I looked sickly, she’d chase me on the sunny patio to get some sun. The more sun I got, the sicker I got. I had systemic lupus.
Nobody in my family even knew what lupus was in those days. From about twelve-years of age until the present I’ve had systemic lupus and other auto-immune conditions.
It crept up on me slowly like tree roots in a water line, doing it’s damage mostly unseen. Even when the damage to my body was visible, for years no one identified the problem. I was just weak. Thin. Lethargic. Sickly.
I can remember my dance director when I was in high school taking me aside and explaining she’d have to take me out of the main dance routines because I wasn’t developing enough muscle tissue to sustain the rigorous choreography. She knew I loved dancing so she gave me my own position on the stage. I became the clown dancer, dancing through and around the other dancers, bringing laughs from the audience.
Dance became very tiring for me so I moved on to my next love, theatre. That was okay for a while, except that arthritis hit my voice and I became unable to project.
Undaunted, I moved onto radio and television. They had microphones. My voice was no longer a problem.
We moved away from where the radio and television station was, so I returned briefly — off and on — to theatre. By then, my voice was better. The arthritis had moved on to other places in my body.
Then I became more crippled, unable to move across a stage with confidence. I took up stained glass. By then, arthritis had weakened my hands. I abandoned stained glass and went to art school to study watercolor. By now, I was over forty and arthritis was in my knees and feet. In art school, we sat up on high stools to reach our art tables. I got kicked out of art school because they were worried about my being so physically unstable.
By then, I was so disabled that the doctors asked me to take some tests to look for clues for things I could do to support myself. I must have taken every test they had, physical and mental. The result: I was most suited to write or work for the state department at an embassy. An embassy? In my hometown of Puyallup? We barely had a Chinese restaurant.
A few days after I got the test results, I got a phone call offering me a job as a staff writer at a local magazine.
From there, I moved onto writing novels.
I call this my last frontier. If I ever become unable to write, there are few other things I’m capable of doing and I’m interested in none of them.
But I guess I could pick something else if I had to.
I could go into politics, I guess.
Or become a bag lady.
Or move to New Orleans and sell violets on a street corner.
I kind of like that last idea. I could set up my cart outside a bar with lots of music…
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