Every month I will post a new chapter from LIFE ETUDES.
An Etude for September: A Study In Changing Perspective
Etude Number 6
Steve was editing photos on his computer. I looked over and saw a purple flower with a water droplet sparkling in the sunlight. It was lovely. I gasped at it. Steve didn’t. He grunted that it was all messed up. In the green background of the photo was a single red dot. He explained to me the dot was called a stuck pixel. Then he got technical about his camera. He said many words. I recognized them as being in English. I had just never heard them put together in that order before. When he started talking about ISO and sensors my eyes glazed over.
Fortunately, Steve didn’t notice he lost me. He zoomed in close and fixed the tiny dot with editing software. Then he zoomed back out. When the flower was full screen, I couldn’t tell the difference between the before and after. I asked him to undo the correction. I leaned in and stared at the flower, searching for the single red dot. It was like playing Where’s Waldo. I never could find Waldo. I couldn’t find the stuck pixel, either.
“What do you mean you can’t find it? It’s obvious. It’s right there!” He gestured at the dot as if it was bigger than the Golden Gate Bridge. “Don’t tell me you can’t see that.”
I didn’t tell him. But, I really couldn’t see it. If he hadn’t told me there was a red dot, I wouldn’t have noticed. Steve would always know it was there. It would be the first thing his eye went to when he looked at his photo. It would drive him crazy. After finding the stuck pixel in that picture, Steve went on a search and destroy mission through the thousands of photos on his hard drive. Sure enough that same stuck pixel was in every one. He growled something that rhymes with ham it. I made an excuse about needing to check my blood glucose and slowly backed away. He spent the next few hours fixing his pictures. I played Where’s Waldo on my iPad. I still couldn’t find Waldo. Not even in HD.
Red pixels didn’t belong in his photos and I don’t blame Steve for wanting to get rid of them. Zooming in on a tiny speck and freaking out over it secretly amused me, until I remembered I do the same thing. Not about photos, but about my health. After I found out I have diabetes I was obsessed with my blood sugar levels. I charted, graphed, and paid attention to every fluctuation. I did the same thing after I was diagnosed with MG. I read everything I could find about it. I even read nonsensical stuff that sounded like this: myasthenia gravis is a rare autoimmune disease where antibodies form against acetylcholine nicotinic postsynaptic receptors at the myoneural junction. I told you before I am Hermione Granger. I wasn’t kidding.
When my health goes bonkers the first thing I do is learn all I can. I read scientific journals, clinical trials, articles by experts, and crackpot theories from a guy named Elmer who just returned from a UFO. I inhale as much information as I can. I become like my husband when he was looking for stuck pixels. The search for information consumes me for months.
Why do I do this? I’ve asked myself that question at 4:28 in the morning when I am still deciphering scientific journals online. I think obsessive knowledge accumulation helps me feel in control. Chronic illness makes me feel out of control. It is an overwhelming experience to become disabled as an adult. Growing up with a chronic illness is a different experience. One I sometimes wish I had. Perhaps all of this would feel more normal to me. None of this feels normal. I’m an adult. I’m expected to know what to do. The early learning phase of my life is over, but when it comes to knowing how to cope with all this I am a beginner.
Right after my diabetes diagnosis I was obsessed by it. I zoomed in on diabetes like it was my personal stuck pixel. Like Steve, I was trying to fix things, but I don’t have Photoshop for my health. Instead I went down an intellectual rabbit hole reading everything until the details gave birth to tangents, trivia, and minutia. Fortunately, living in extreme close-up and data mining doesn’t last for me. It is a phase I pass through on my way to acceptance.
Accepting the unacceptable is a way of life for me, but it still isn’t easy to do. Right after a diagnosis rocks my world I want to do something about it. I want to take charge and be in control. I’ve been through this three times and all three times I disappeared into an information gathering frenzy. I was trying to understand what was happening to me. Like a blind and deaf child holding a turtle for the first time, I wanted to know what this alien thing was, what it was going to do, and what to expect next.
I hate surprises. Not knowing what is coming next freaks me out. I’m a sensitive soul. It takes me longer to process stress than most people, so I avoid surprises. Seriously, if someone held a surprise party for me I would run away. Chronic illness feels like one long surprise party. Only it is in University of Catastrophe student union and the balloons are filled with skunk oil instead of helium. Don’t ask what is in the confetti. You don’t want to know.
In an attempt to avoid surprises I plan ahead. Actually, I plan how I am going to plan ahead, before I plan ahead. I am the person who has two iPad chargers and two computer chargers on a trip. I write lists about lists I am going to write. I really do like to know what is coming. After a new diagnosis my ability to plan ahead is obliterated. How can I plan ahead if I don’t know what to expect? Learning at an obsessive pace is how I find out what to anticipate. Although it may look crazy on the outside, obsessive learning isn’t my goal. Understanding is my goal.
I gather information, cling to it, turn it all around in my head, and assemble it like a puzzle. When I have all the pieces aligned I know what to expect. Obviously I can’t eliminate all surprises, but I can minimize them. When I emerge from a knowledge binge I feel calmer. What was the stuck pixel in my life no longer consumes my attention. I’ve learned what I can control and what I can’t. I’ve learned to anticipate different ways things can go wrong and how to cope when they do.
I also learn what to ignore. Not everything that happens to me is a crisis. Instead of fearing an imaginary specter, I know what the danger signs look like. MG and diabetes can be deadly. Even if they don’t kill me they can both have serious consequences. If I want to avoid disaster, I need to know what I am looking for ahead of time. Now that I know what to expect, I don’t live in a constant freak out. My concerns are targeted on specific things. I’ve surrounded all of my health concerns with tripwires and sirens.
If none of my alarms are going off, all is well. Most of the time all is well. I don’t want to live as a hostage to MG and diabetes. They aren’t in charge of my life. I am. Chronic illness is a stuck pixel in my life, not the whole picture. I can change my perspective. I can take the camera lens in my soul and zoom in on my inner stuck pixels. Or I can pull back and see there is more to life than this.
© 2013 by Marie Smith
From the book: Life Etudes: Studies In Thriving At The University of Catastrophe
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Check back in October for a Study in Finding Meaning