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.”

<Silence.>

“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… ”

<Silence.>

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 If you don't have RA, please read. 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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