The Confusion of a Smile

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Kelly shadow smallIf you have RA, you’ll probably just nod your head as I share this private experience. If not, you may just scratch you head: huh?

It’s all good, right? Well, mostly… I mean, a lot of living with RA is actually hard or disagreeable, but we smile anyway. What are you gonna do, right?

I smile a lot. Little crows’ feet prove it. I smile through pain. A long furrow on my forehead proves it.

Like most of you, I don’t whine when it’s bad. It wouldn’t leave enough time for life. But if you heard my recent interview with Dr. Borenstein, you probably heard him say that I must be doing very well on treatments. What gave him that idea? I have to think it’s at least partly – that I keep smiling.

Kelly's shadowMy first thought Monday (yesterday) morning was, “I can’t miss the plane again.” Of course, the plane doesn’t take off until Friday morning. But it takes me a long time to do things and I’m really busy, working about 16 hours a day with RAW, RPF, homeschool, and a lot of other things. I’ve missed more than one plane.

This morning I talked with a friend who got home from the hospital last night. Then, this afternoon I got a call from another friend who may need knee surgery. Both of them have had several spinal joints fused. My neck sounds like cellophane and I get the nerves burned away every few months, but I mention that it hasn’t been operated on yet.

When the call ended, I felt like the odd man out. Like I couldn’t properly understand how it is to be them, if I haven’t been there yet. It was silly, but I felt bad.

I won’t. Cry.

Anyway, then an interviewer called me and asked me to set something up that was impossible for me. I was obviously not understood. And, isn’t it worse when someone says, “I understand,” and doesn’t?

At one point, the person said, “And we need to get a shot of you doing things you do like sew or paint or garden or cook or run.”


“Hello? Are you there?”

My smile faltered. My Sjogren’s’ eyes were dry, but my throat choked. “No. I used to do all those things, but I can’t… ”


Me: “I am really busy… I’ve written hundreds of articles. And I talk to patients every day…” It went downhill.

“Maybe you can at least make a piece of toast?”

Me: “How about a picture of my laptop?”

It was the first bad interview/pre-interview in 3 years. I got off the phone and all I could think of was “I, I won’t cry” as in the song by Margaret Becker.

There’s a candle in the night
There’s a refuge within sight
I, I won’t cry
There’s a dream that I can hold
There’s a hope that I can hope
I, I won’t cry

I will keep smiling most of the time; I’m not going to wait until the pain lets up. But, when RA makes things a misunderstood mess, I’ll reserve the right to cry too. If my eyes can manage it.

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This entry was posted on Wednesday, April 25th, 2012 at 5:00 am and is filed under The Real Rheumatoid Disease. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.


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