About

I didn’t want this life.

Correction. I don’t want this life.

To say “didn’t” is to imply that I have since changed my mind.  I haven’t.

But to dig my heals in and refuse to move forward in spite of the circumstances is unproductive and exhausting. Does it take more energy to kick and scream, balking whatever it is in front of us, rather than simply continuing to walk, hoping for something good on the other side of the fear? I think so. And since I don’t have much energy these days, I don’t want to waste my spoons on rebelling anymore.

Don’t worry. If you don’t know what I mean by spoons, we’ll get to that later.

For now, here’s my story. I am a broken crayon. I have been fractured into pieces by life. The paper that once held me together has long since been destroyed by Lyme disease, and I’m not even sure who I am anymore without it. My labels have changed. Without the paper enveloping the crayon, can you recognize what brand it is? Can you know its color without it? In a pack of eight, sure. But what about that highly-coveted 64-count box? Can you differentiate between the colors Sunglow and Goldenrod without their labels?

We all have labels. They aren’t visible like the labels on crayons, but they are there nonetheless. I am a mom, a wife, a teacher, a sister, a daughter, a friend. All of our lives we are identified by our connections to others. I am Debbie’s daughter. Gracie’s mom. John’s new wife. Mime’s big sister. Lauren’s English teacher. My illness has stripped me of many of my roles, and the most basic are sometimes blurred without the label to identify them.

However, even without the paper, broken crayons still color. It’s not as effortless or intoxicating as a crisp new crayon fresh from the box, but the color is just the same. The intensity can be as dramatic, if we push hard enough. A broken crayon has the same value as a brand spanking new one. Fragmented or whole, they have the same purpose, the same potential, and the same vibrancy. And they both must be embraced to realize their worth.

Yes, Lyme disease has broken me physically and emotionally. My body doesn’t work the way it once did. Just two days before this disease attacked me, I was jogging three miles every other day and doing yoga in between. Now my muscles are almost always achy, and it feels like I have the flu all the time. My joints swell and hurt, and I’m often forced to use a cane just to walk to my mailbox. Lyme has attacked nearly every system –cardio, neuro, muscular, digestive, respiratory, — leaving me dazed, discouraged and drained.

I am a broken crayon, but if I push hard enough, I can still color. And that is what God wants me to do.

I didn’t want to. Despite so many nudges, I dug my heels in.  A thoughtful friend sent a burned CD, hoping to lift my spirits with the spiritual voice of Ginny Owens. A post-it note attached to the CD sleeve said, “Listen to #14.” The track was titled “Don’t Waste Your Life.” Valid advice that I’d repeatedly given freely to my teenage students, but this song took my breath away.

“…I finally heard a whisper

A still, small whisper

Don’t waste your life

Wishing, hoping, waiting for a better day

You know that would be a shame

Shine, shine your light

Bigger, brighter, for the whole world to see

Play your part in history

Don’t waste your life

So I’m making this my mission

I’ve made up my mind

Even I can make a difference

One story at a time…”

Wow. How could my friend, a colleague who I hadn’t spoken to since my illness began, know exactly what was on my heart? I felt a nudge, but I didn’t act on it.

Then came the church service with the message “The Comma.” When you get gut-punched by life, are you putting a period where God intended a comma? It’s over. Period. Or do you choose to continue the sentence. It over, but..…

Of course, the English teacher in me was immediately stimulated by this grammatical topic, and very quickly, I felt as if the preacher was speaking directly to me. The rest of the audience disappeared. It was just the two of us in that room, and he was tugging my heart strings. No, tugging isn’t the right word. Jerking. Yanking. Heaving. Creating a dazzling, vibrant picture of hope and possibility. It’s not I’m sick. Period. Or I can’t work. Period. It is I’m sick, but…

I can help those who suffer like I do.

I can create awareness and protect others from getting sick.

I can tell my story. I can color.

Still, even with the nudging, the process was overwhelming. How could I help others? Sure, I’ve read a ton of books, research, web articles, and blogs on the subject, but I am not a medical specialist. I’m an English teacher, but I’m not an avid writer. How could I create awareness when I can’t even keep a dinner date with my friends? When can’t even wash my hair by myself? Instead of looking at all the ways I could do this, I saw the challenges. Living with a period was a lot less work than living in the discomfort of the comma.

To write my story, to counsel others, to put myself “out there” felt like I would be accepting this new life. I don’t want to accept it. I want my old life. Even though God was nudging…hard…I didn’t want to listen. I kept finding excuses. I’d journal, but I wouldn’t publish it because it didn’t feel good enough yet.

Then the messages started. I received three private Facebook messages asking about tick bites and Lyme disease. “I was put on Doxycycline, but should I get tested for Lyme?” “My son had two ticks on him, but they were teeny tiny. Should I be worried?” I responded to each message immediately and with passion. I knew about this stuff, and I didn’t want anyone else to get sick.

Then two phone calls. “It’s been days since I was bitten, but now I have the bull’s-eye rash. What do I do?” Holy moly.

A private message from a graduate about a friend who is currently suffering from Lyme. She was diagnosed the same day as me, but her symptoms had been present much longer. “Could you talk to her about your recovery? She’s been really down lately.”

How could I possibly talk to someone about recovery when most days I don’t feel very darn recovered. I still hurt. I fall apart. I feel angry. And I certainly don’t have my old life back. How could I provide reassurance and hope when some days I don’t feel it myself?
But I did it. In a stranger’s kitchen, I met a 22-year-old woman who suffers from two to four seizures a day. Her eye droops like mine did a few months ago, but when I look at her I see only youth, beauty and courage. A college grad and a newlywed, this girl has so much life ahead of her, but instead of thinking about the promises of marriage, babies, and a career, she worries about how they’ll afford additional treatment, how her mom will manage to get the wheelchair in and out of the vehicle, how long her husband will be patient and understanding of her invisible symptoms.

I shared my story with her and her mom. The timeline and treatment of my Lyme disease. Ways I’ve found to deal with pain or depression. I listened to her, and I knew she was relieved to hear that I, too, have experienced the fear that “I’m crazy.” Lyme is a mean disease; it not only affects you physically in hundreds of ways, it also creeps into your mind, causing you to doubt yourself and your self-worth. Even though it is heartbreaking to now have a connection with this brave family based on our mutual disease, it is also beautiful to know that people you don’t even know can love you through it.

I left that home feeling raw and tired. My heart ached, yet somehow, my heart also felt full. I had made a difference, albeit a small one. I had given them options, and just seeing me walk had given her some hope. You see I’ve realized that in supporting others, we also support ourselves. Talking with that sweet girl gave me purpose and strength. I could do this after all. I am broken, but I can still color.

While processing these thoughts, a song came on the radio. I already knew that my life was spinning in a new direction, but these lines confirmed it.

“This is the stuff that drives me crazy

This is the stuff that’s getting to me lately

In the middle of my little mess

I forget how big I’m blessed

This is the stuff that gets under my skin

But I’ve gotta trust You know exactly what You’re doing

Might not be what I would choose

But this the stuff You use”

My little mess. How big I’m blessed. This is the stuff You use.

Wow. Just wow.

I am a broken crayon, but I can still be used. The picture I will color is very different than I thought it would be a year ago. Now it’s more. More vivid, more meaningful, more difficult, more beautiful. To share my journey with you doesn’t mean I’ve accepted this new life. I don’t have to arrive at my destination to tell you about my trip. Instead, I’ll take you with me, and somehow we’ll carry our loads together, coloring along the way.

Because broken crayons still color.

6 thoughts on “About

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  1. I was diagnosed twice; in 2007, when I knew it wasn’t sinusitis because my arms went randomly paralyzed, and again in 2013. Now I have RA, though I forever wonder how much is RA and how much is Lyme.

    If you ever need someone to talk to, don’t be shy.

    Like

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