Advent, Reflectionary

Released for Joy

And the ransomed of the LORD shall return, and come to Zion with singing; everlasting joy shall be upon their heads; they shall obtain joy and gladness, and sorrow and sighing shall flee away.

Isaiah 35:10

When I was diagnosed with Rheumatoid Arthritis in 2008, I felt like life as I knew it was over. The stiffness and pain in my hands impacted daily activities, like preparing vegetables for dinner, or holding a pen to write a check. I had trouble squeezing the handle of the pump to put gas in my car. There was one morning when I couldn’t turn the knob to open the door and get out of my own bedroom. Creative pleasures like knitting and playing the piano seemed sure to be over for me.

I felt trapped, waiting to learn if medication would help, unsure of the long-term prognosis.

A friend who had been living with the same chronic illness since childhood pointed me to this section of Isaiah. “Strengthen the weak hands, and make firm the feeble knees,” I read in verse 3. Was this a commandment or a prophesy? Strengthening my weak hands and firming up my stiff and painful knees seemed unlikely, even impossible.

Isaiah points to the time when all the things holding us captive will be reversed, the prison doors opened, the locked windows thrown wide, the time when joy deferred becomes joy unstopped. Both Psalm 146 and its alternate choice, the Magnificat, lay out God’s plan for upsetting earthly power structures. And in Matthew 11, an indirect conversation conducted by messages to and from jail shows how the expectations John the Baptist had for the Messiah have been upended by Jesus.

Most of the time we are in the prison cell with John, feeling the limits on our power to affect change, wondering if any of the things we planned will ever come to fruition, waiting on God to show up in the form we expect and prefer. To that, we are all captive. And yet here we have this promise of God’s Holy Way, running like a ribbon of road through scripture. The reversals we hope and pray for are the will of God, who will bring wholeness, freedom, and joy.

Sometimes I am immobilized by a sense of my weakness, my feebleness, my “what I do doesn’t matter-ness.” My illness feels like a trap. I feel a kinship with Mary and wonder if she felt captive to the appearance of the angel and the overshadowing power of the Most High. She wondered how it could be possible, this commanding prophesy, this prophetic commandment.

Still, she said yes to it. She embraced God’s reversal of her life, of the expectations everyone else had for her, of the limits she held for herself. If you preach the Magnificat, I hope you will add the three words the lectionary leaves off, “And Mary said…”

Those words remind us she was a prophet.

Whatever is binding us, stalling us, holding us captive, may we, too, embrace the reversals promised by God and be released for joy.

Purple and orange crocuses bloom from dry leaves. The text is "Advent 3. The wilderness and the dry land shall be glad, the desert shall rejoice and blossom. Isaiah 35:1"

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Rheumatoid Arthritis, Rheumatoid Disease

I confess: Glenn Frey, a cough, RA, and me

RD-FACTS-1
It’s Rheumatoid Awareness Day.

Aside from being able to sing along with many of the Eagles’ songs, I didn’t know much about Glenn Frey until I read that he died of complications from the chronic illness we have in common, Rheumatoid Arthritis. There is a lot of bad information out there about RA; it is often confused with Osteoarthritis by people who don’t know that an auto-immune disease is more complicated than damage to the joints. Many patient activists/advocates have asked that RA instead be called Rheumatoid Disease, to end the arthritis comparisons. In comments on the news reports of his death, some people blamed the medications used to treat the disease. Others critiqued Frey for not being a more vocal advocate for Rheumatoid Disease patients, despite the picture below. People lash out when they can’t abide what’s happened, looking for something or someone to take responsibility.

Glenn Frey at an Arthritis Foundation Walk in 2013.
Glenn Frey at an Arthritis Foundation Walk in 2013.

Some people do have bad reactions to medication for RA (including methotrexate, Enbrel, Orencia, Humira, and Remicade). One side effect they all have in common: they leave patients immune-suppressed and therefore raise our susceptibility to infection and our ability to combat other illnesses. Thus, a virus that might not bother an ordinary person will become a cold that goes to the chest, and then pneumonia, which for people like Glenn Frey and me is life-threatening.

In January, I had a cough. The only way to get over it and have a good chance that it wouldn’t get worse and create greater risk was to take much better care of myself than I would have done prior to the RA diagnosis I received in 2008. That means lots of fluids and an inhaler and fluticasone spray. It means staying home and resting, perhaps my least favorite thing, despite my kind spouse’s reminder that “Beds are where sick bodies get better.”

It also means going off the RA meds until the infection is gone. Symptoms return fairly quickly for me. My joints stiffen, in particular my hands, which for a writer and knitter like me, or for a musician like Frey, can be disabling. When my hands are bad, basic tasks become difficult. I can’t chop things or stir them. When it’s worst, I have trouble cutting my own food or dressing myself. And that’s just my hands. Overuse of inflamed joints can cause permanent damage.

“I don’t have time for complaining,” a churchwoman uninterested in my illness once said when I tried to explain. When you have a disease people cannot see, you hear this kind of thing, which is why we keep it to ourselves. I can’t speak for Glenn Frey, but when I am ill, I don’t have enough energy to get angry about what has been lost. When I feel better, I don’t want to waste the good moments dwelling on the bad ones. I pretend I’m okay. I pretend to myself that it’s all okay.

I practice denial.

If I sat to counsel someone else living with a chronic diagnosis, I would encourage them to express all their feelings, but I admit I haven’t dealt well with anger. I wish I could blame something or someone, because I don’t want to blame God for this thing I did not cause and no one can fix. I’d like to lash out the way the churchwoman did at me.

I’m still mad that eight years ago I woke up in the middle of one night and couldn’t bend my fingers. I’m mad that the next morning I had to call for my 12-year-old to come and open my bedroom door from the outside, which was scary for her and scary for me, too. I’m mad that while it was really bad we ate a lot of frozen meals from Trader Joe’s and microwaved bags of pre-cut vegetables instead of home-cooked meals, because by dinner time I didn’t have any “hand” left.

With Lucy when I thought I looked good, but was already sick. Mardi Gras 2008.
With my daughter shortly before I became ill.

I’m mad that steroids and inflamed joints meant that over time I lost the body I had when I first got sick; I was in the best shape of my middle years. I’m mad that I didn’t have my A-game to bring in the churches I served as a full-time pastor after I became ill. I’m mad that unless I take ridiculously good care of myself, and sometimes even when I do, I land back in the place I don’t want to be: too ill to leave the house, or hold up a book, or do anything much other than check Facebook on my phone.

No one wants to hear about this. People prefer cheerful denial. I prefer it.

Now, though, it seems that God has some work for me to do telling the stories of other people who have chronic illnesses, and how illness is and isn’t acknowledged in our faith communities. I have ideas and notes and people ready to talk to me, but I confess I’ve been resisting sitting down to do it.

I confess: it’s partly because I’m still mad that this is my story, and it’s partly because I’m afraid that when I share it, people will tell me they don’t have time for complaining.

I confess: I understand why Glenn Frey kept a low profile.

I confess: I’m telling you all this now in hopes I can work through the anger instead of denying it, even though I don’t know what being post-anger and past-denial might feel like.

I confess: I’m telling you all this so maybe you’ll understand why I go to bed when I have a cough.

*****

Many thanks to Kelly Young, an amazing advocate for those of us with Rheumatoid Disease, whose blog RA Warrior has been a supportive resource for many years. I’m grateful to be part of the Rheumatoid Disease Awareness Blog Carnival she hosts; click here to find more great posts about RD.

You’ll find an archive of my posts about Rheumatoid Arthritis here.

#amwriting, NaBloPoMo, NaNoWriMo, Rheumatoid Arthritis

Down Day View

window viewOne of the things I don’t like to tell anyone is that there are some days having auto-immune arthritis means I don’t go anywhere or do much of anything. I know in my higher mind that these are days spent recovering from doing too much the day (or days or weeks) before. Still, it bothers me to have any days like that when there are so many ways to spend my time.

Yesterday was one of those days, so I was glad to see a NaNoBloMo prompt that I could do, even if I didn’t have the hand available to turn it into a blog post at the time. Mary Beth suggested looking out a nearby window, taking a picture, and then writing about what you could see in the picture that you hadn’t noticed while simply looking outside.

This is the view from our living room window across to the Presbyterian Church. It is a view I love, and I was hard-pressed to imagine what I would find that I hadn’t noticed before.

Meanwhile, kathrynzj was coming home with a load of things from our townhouse in the back of her van, and she pulled into the driveway, then backed out again to turn the van around. I took the picture at that moment, having no idea she was back from her errands.

I didn’t type anything yesterday I couldn’t manage on my phone with my left thumb. (I wrote 0 words for my novel.) Today is already better.