Bloody Lymey

A Blog About Living with Lyme Disease

Welcome to the Club …

on June 11, 2011

When my lyme disease was at its worst, I reached out to people who had chronic pain issues. They inspired me. Some smiled. Some trudged on and went about their everyday business. Some went out and did things. I reached out to the ones who didn’t lay down and surrender. I reached out to the ones who had something I wanted whether it was resolve, stamina, strength, optimism, hope …. something.

There were people with inoperable backs, MS, RA, bad knees, etc. One such lady has something she never disclosed (and clearly didn’t want to), but she uses a walker and every step looks excrutiating.

She spends lots of time laying in the sun, telling me how it feels like a heating pad and soothes her pain. She also has a theory about the vitamin E. Her skin is brown and leathery, softening and pinkening in the late winter/early spring before she returns to Helos-worship.

This lady was very sympathetic and we grew closer and closer, as we compared notes and suggestions. Both of us knew the subtle things that work in our minds when the pain comes, when it goes, when it worsens, when it eases, when it returns, when it strengthens …. there are millions of different little mind-f**ks that occur to those with chronic pain. Our commonality was a burning desire to be “okay” even if our bodies weren’t.

Whenever we saw each other, we would hug and smile and compare notes. I would hug her GENTLY of course because there seemed to be something sorely brittle about her.

This went on for a year or so.

We ran into each other one day and she asked how I was. I hadn’t seen her for a while. I gushed about how good I was feeling. My eyes watered. I never expected to have such a break-through (and that’s what I thought it was at the time. I was “cured.” It was over.) She smiled tepidly, nodding her head in jerky movements. I asked how were things with her. She smiled tightly and nodded. Biting her lip, she smiled again and walked away.

Since that moment, she has said very little to me – even if I say hi to her. Looking back, I’ve memorized the conversation, and have analyzed it perhaps too closely. I can honestly say there was no gloating or bragging on my part. Simply genuine joy. However, is it possible she sees the conversation differently? Of course. There’s three sides to every story – and one is the least accessible: the 100% honest to God’s truth.

This lady welcomed me to the club of pain with open arms, but clearly wanted the door to hit me in the @$$ on my way out.

A strange dynamic occurred between myself and some of the others. Some were genuinely and transparently pleased with my good fortune. Others seemed a little envious. Still others seemed awkward like our one commonality has been extinguished – and in some cases, it had.

In a way, I had “survivor’s guilt.” I practically apologized to people (the ones with chronic pain) when they would ask how I was and I had to say “I can’t complain.”

In my 9-month remission, my relationships with these people dwindled a little. I felt self-conscious and they seemed to have some mixed emotions, too.

On occasions, I’ve encountered them again. There are times when I look pale and tired. Other times when I’m trudging slowly on brittle knees, knowing it’s going to rain. They’re still there for me. All of them. Except the lady with the walker. God bless her.


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