I’m thrilled to be blogging at DIK! Thanks so much for having me!
I thought a lot about what to write—everything from writing to publishing to finding agents. But they always say to write what you know, so I’m veering a little bit to talk about what it’s like to be a writer with a “silent illness.”
What do I mean by silent? I have lupus. If you see me, you’d say, “You look perfectly healthy!” Well, yeah. Thanks. I do.
Let me back up a second and explain what lupus is. Our bodies have the great ability to make antibodies to kill off things that attack us. Like viruses. These little soldiers go to war and kill off whatever they are sent to attack. In people with autoimmune illnesses, those fantastic little antibodies decide to target a certain part of the body and set about destroying it.
In my case—which is fairly typical of women with lupus—the main symptoms are fatigue and pain. And I’m not talking the I’m-dragging-and-need-some-coffee fatigue. It’s more like moving-is-simply-impossible-for-a-while fatigue. But I swallow it down best I can and drag my behind out of bed to face a classroom full of far-too-energetic high school seniors every day. I’m lucky because I can do that. Many lupus victims can’t. In fact, many victims of “silent illnesses” can’t.
Another author friend of mine has multiple sclerosis. You’d never know it from looking at her, which is my point. I admire that she keeps churning out bestselling novel after bestselling novel regardless of the disease. She’s an inspiration to me and one of the reasons I keep my butt in the chair and hands on the keyboard despite how blah I might feel.
Perhaps the message here is more along the lines of “never assume,” which is good advice in general. If you see a woman in her thirties getting out of a car she just parked in a handicapped spot, but she isn’t limping, doesn’t need a cane, and looks fine to you, never assume she is simply looking for a great parking spot. Maybe she has rheumatoid arthritis. Or chronic fatigue syndrome. Or even a severe case of lupus.
As I said, I’m lucky. The pain I have tends to be in joints and places on my body called “pressure points.” The way it affects my writing is that I sometimes have to coax myself—a lot—into churning out a few thousand more words instead of taking that nap. And if I sit too long in one position, when I get up, I look a little like the Scarecrow from the Wizard of Oz. Nothing works quite right, and it takes some work and quite a bit of grimacing to get things functioning again. I don’t let it stop me. Probably because I’m more stubborn than God should ever allow a person to be. (At least that’s what my husband tells me all the time…)
I think being stubborn is important to a writer. We have to persevere because the road to publishing ain’t easy. In fact, it’s downright treacherous. So we have to keep plugging away, no matter the obstacles. Illnesses. Family obligations. Rejections. All these things—and more!—we simply have to learn to address and compensate for, or they will become nothing but excuses.
So what are the hurdles you have to jump to be able to write? I’d love to hear your story!
*hugs*
Sandy James
http://www.sandy-james.com
6 comments:
Hi Sandy, thank you so much for sharing this post. I too have a "silent" illness (ankylosing spondylitis) and sometimes it wins the battle of pain versus my determination. You have inspired me to try a bit harder when it comes to writing and reaching a word count.
I often get angry glares and people walking by my car to make sure I do have a handicap placard when I park in a disabled spot. My usual reply to them is, "I'm broken on the inside."
I have what my rheumatology doctor calls the sister syndrome to lupus. You get the Scarecrow symptoms from sitting and typing...my issue is sometimes called the "Tin Man" disease. Sometimes a field of poppies sounds like a great idea for a little nap!
One of the ways I get writing done is while getting my 6 hour IV infusions. No boredom there!
The only thing that really gets in the way of writing is when I swell up and get sausage fingers. Typing can be a total frustration.
Once again, I just want to say thank you for sharing a personal battle of yours. There are days where I feel very isolated in authorland because I don't tell anyone that I am sick.
Are there better times of the day for you to write? Do you have any tips on comfortable ways to sit at the computer that have worked for you? Do you have any suggestions on combating that evil exhaustion monster?
I so appreciate reading about your experiences.
Christa
Sandy: Thanks so much for sharing your personal "cross" that you bear each day. One of my good friends has suffered from lupus for years and she is a nurse--head nurse, actually, and she, too, does the I-have-to-drag-myself-out-of-bed-this-morning thing and get to work. She tells me that the victory over the fatigue, no matter how little, means that she has successfully battled that illness for one more day. That you write in addition to teaching is great, especially for all of us who love to read your books. We are privileged to have you share on DIK.
Thank you for sharing your story and reminding me to never assume about another person and to be grateful for my own blessings :-)
smaccall AT comcast.net
I broke my ankle a couple of years ago. People (even total strangers) asked me why I didn't have a handicapped parking sticker. In the early days of wearing the cast, I agreed whole heartedly. It totally sucked rocks to go anywhere or do anything. It hurt and took forever. Toward the end of my time wearing a cast I still joked about it but I had started to get a different perspective. Now when my friends or family complain about someone parked in a handicapped space, I am quick to point out that maybe the person's handicap isn't obvious. You can't always judge a book by it's cover. I can't imagine being a high school teacher even on my best days! Teaching is hard! Thank you for being a teacher.
jepebATverizonDOTnet
Sandy is also an inspiration to me, when my oldest son had her and came home from school one day, he said, "Mom my teacher has what you have, meaning lupus." At the time it was new to me but I was already on disability because I also have what Sandy's friend has, the ankylosing spondylitis and synovial chondramytosis as well as Avascular necrosis. I had just had a hip replacement because the osteoarthritis made it impossible to walk. But there is more my diseases has put me in kidney failure and I am facing dialysis any time. Sandy has always inspired me to keep going and to try and accomplish something each day, which I do, but I get the same reaction from people when I park handicapped, they look at me like, you don't look sick but they have no idea how I feel. What an accomplished write Sandy is and I as well as my son are very impressed with all of her talents. Keep writing Sandy!!!!!!!
Thanks for all the comments!! This was a hard blog to write because I was afraid people might view it as whining about my illness. My thoughts and prayers are with all of you who are also struggling to make it through each day. Thanks for stopping by and taking the time to read about my story. :)
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