Thursday, October 16, 2014

A year with the lupus.


A chronic illness diagnosis is not a death sentence. It is a junction in your journey through life that takes you on a different direction than you desire or anticipated. There's no doubt that your chronic illness has wounded you. But a wounded warrior gets up, in spite of the wounds, and moves forward again, and again, and again.
-Richard Cheu, Living well with chronic illness: A practical and spiritual guide


It was one year ago when I was told I have lupus. It hasn't been the easiest. In fact, I am just starting to accept that I might actually have lupus, like lifelong lupus. Some days. Some days, I still can't help but think this is just a phase I'm going through. That I'll look back on this as those years I was really sick and we thought it was lupus. I have trouble imagining that I may feel this way for decades.

There are days when I feel so defeated. When I think my sickness stole my future. When I think of all I've given up, all that has been taken away. When I feel so crummy and don't even have anything to show for it.

But then there are days like October 4th. When I have the strength and the freedom to say yes to hiking with friends. And when those friends actually mean rock climbing when they say hiking.



See that mountain. I climbed it. Without any special equipment.

That's not as stupid as it sounds. Well, maybe it is. (But we didn't start at the bottom... If that makes it better.)

I've been on a hike coordinated by this friend before. It didn't involve clinging for my life to a rock several hundred feet above the actual ground. It's just that on this occasion I didn't figure out he expected us to scale a rockface until I was already on my way up. (Sometimes I'm slow and naive, you know.)

We stopped for lunch on the first (and easiest) ledge and my brain started putting some little details together: (1) The hike we were on was a loop. We weren't going to backtrack. (2) I saw no way off the ledge but to backtrack.

Already, I had been informed the hardest part of the hike was over. So I asked, "Jeff, you said we make a loop, so where do we go from here?"

"Up."

I looked up but didn't see the top and wasn't going to lean out to try. There were a few more ledges between the top and where I was, and each time I was told: (1) This one is the hardest in whatever way. (2) It is easier to go up than down.

We passed people along the way who had reached their own summit. And our group ended up splitting into two. Some chose the harder way back down.

I stood on the last ledge before the top and didn't know if I could make it. But I didn't know when I'd get another chance to try. Foothold, then handhold. One after the other. Inch by inch I ascended. Or more specifically, crawled. And prayed. And at one point screamed for help. (That really got a response!)

And I made it to the top and I felt so accomplished. I felt even more accomplished when I looked back later in the hike to see what I had actually climbed. I never would have believed I was capable of that. If I would have known how big that mountain was before I started, I never would have even tried.

As I told my husband on the way home that night, I have felt defeated so many times this year that victories like that become even more meaningful.

And there was so much about climbing that mountain that metaphorically mirrors my own journey with sickness. I never would have thought I could handle it. I never would have thought I could be sick and mostly joyful. Grateful. Hopeful. By the grace of God, I have.

Within hours I started feeling the effects of the day's conquest. Ibuprofen, extra herbs, a soak in epsom salts and essential oils, a heating pad and at the beginning of those three days with painfully sore muscles I could only feel angry and frustrated.

I'm too young to feel this bad.

The old Amy could have recovered from that in less than a day. Ironically, the old Amy is a few years younger than the new Amy and is in much better health. I compare myself to her sometimes.

But the old Amy lived life with more fear. The old Amy took fewer chances. I knew the old Amy pretty well and I'm putting my money (well, you know, if I was actually earning money these days) on she wouldn't have even tried.

And long before the pain eased, the anger melted.

I am weaker now. But in ways I am getting stronger.

And how many people in the world never even get the chance to try something like that for fun? And how many people couldn't even do it at all even if they did try?

I am blessed. With health and strength and much larger margins to rest than most people. (And so much more.)

A few days after the climb I was reading a list I made shortly after my diagnosis of important things I wanted to hang on to. On it: Continue to hike the mountains of my home.

And so far -- thankfully -- I still am able to do that and almost everything else on the list.


I don't know what the next years hold for me, but I am so grateful for the blessings of this one. And I know whatever I may face ahead, I will make it triumphantly (praise the Lord!) to the top in the end.





There's a peace I've come to know
though my heart and flesh may fail.
There's an anchor for my soul.
I can say, "It is well."

-Chris Tomlin, I will rise





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