Posted on May 3, 2011.
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:
Sickly
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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Pammy is the main character in two comic strips by 
A professional writer since 1984, Pamela Rice Hahn is the author of more than 20 published books.
August 29th, 2011 at 7:59 pm
Your story sounds similar to my wife’s. She has suffered with lupus, fibro, R.A. and is 42 and confined to the home most of the time. Sun is a killer for her but there is constant pain, swelling and as you said, weakness.
I would like to share that she wrote a book that was published in late 2010 about her journey but also to provide encouragement and hope for those struggling with illness. I offer it because she has received so very many positive responses of people who’s faith was built up and their outlook changed from her writings. It is called What I Learned Lying Down – Hope for the Chronically Ill and is on Amazon.com.
August 30th, 2011 at 3:49 pm
Greg, I’ll check it out.I, too, wrote a booklet on my lupus–it might not be more than 12,000 words but never published it.
By now, your wife has learned that some days are better than others and to cherish the times when she’s most comfortable.
We’d have a lot to talk about! Is she on Facebook?
I wish I had some new tip that might make her feel more comfortable but I’m sure she knows everything I know and more!
Good luck to you both!
September 17th, 2011 at 2:20 pm
Janelle,
Thank you for your reply. She is on facebook but has so very many friends and has been trying to get away from it. She maintains an email address for our website and readers of her book. She tries to answer as she can. It is be-encouraged@hotmail.com.
Greg