Common English Bible, Denial is My Spiritual Practice, Psalms, Rheumatoid Arthritis, Rheumatoid Disease

Like a bird on a roof

My health has been, let’s say, indifferent over the past couple of months. I’ve had to change some plans, with disappointment, and there may be more of that to come. My rheumatologist has prescribed a new medication and made some adjustments to another; it will take some time to see if this artful combination works.

I always try to be hopeful about these things

I can’t decide how to punctuate that sentence.

“, but …”

“; that isn’t always easy …”

I don’t know. It’s been almost ten years since I was diagnosed with Rheumatoid Arthritis. One of the chapters of my book is about how I have used denial to cope. Now, not only am I trying hard to be more realistic, this time I have felt poorly enough that I can’t fake it.

I can’t.

I’m like some wild owl–
like some screech owl in the desert.
I like awake all night.
I’m all alone like a bird on a roof.
(Psalm 102:6-7, CEB)

I’m not alone, of course. I have a genuinely and generously supportive wife. The lone, wild bird is a creature of my feelings. I reject the idea of being ill and dependent. I like to do *for* others. I’m an Enneagram 2; it’s a feature of my personality, and it’s been important for me to learn to give without wanting something in return, and to learn when something is mine to do, or not. I understand all that.

But must I learn to receive even when I cannot give?

I’ll be honest. I hate that.

Thus the bird on the roof.

Many psalms lay out a complaint, whether a diatribe against oppressors or a lament direct to God. Usually they turn to praise, to some sense of reconciliation with the Lord, some relief of the pain. 102 comes around for one more exclamation in verse 23.

God broke my strength in midstride,
cutting my days short.

My days are cut short because I cannot do all the things I want to do, at home, at work, or at play. And while that is discouraging in the near view, the hardest thing in this illness is how inevitably I get sicker when I am trying to get better.

I don’t believe God visited it on me

That’s a hard one to punctuate, too.

I don’t believe God visited it on me, but I wish I could get a break, some improvement in my health, even a time of staying the same. It seems I need to prepare for more of the inevitable; I will find a way to do it.

For now, though, I am trying to feel my feelings. For now, in prayer at least, I’m all alone like a bird on a roof.


Gospel of Mark, Hope, Lent, Rheumatoid Arthritis, Rheumatoid Disease

Desperate enough to hope (Mark 5:21-43)

Have you ever been desperate enough to hope?

When my mother was diagnosed with metastatic melanoma, with multiple metastases, I had a hard time imagining any outcome other than the terminal results the doctor forecasted. She didn’t have much fight in her, didn’t want to spend what seemed to remain of her life in the hospital, or recovering from more surgery, and she opted for palliative care.

It was hard to know how to pray. The course of her illness seemed almost predictable; the fact of her death took on inevitability.

Jairus did not affirm the inevitable.

Jairus, one of the synagogue leaders, came forward. When he saw Jesus, he fell at his feet and pleaded with him, “My daughter is about to die. Please, come and place your hands on her so that she can be healed and live.” (Mark 4:22-23, CEB)

There’s a fine line between a confident hope and the other kind.

A woman was there who had been bleeding for twelve years. She had suffered a lot under the care of many doctors, and had spent everything she had without getting any better. In fact, she had gotten worse. (Mark 5:25-26)

It’s been almost ten years since I was diagnosed with Rheumatoid Arthritis. I felt pretty desperate that spring, terrified of what was to come, frantic about the stiffness and swelling and pain that rendered ordinary tasks nearly impossible, forcing me to choose between chopping broccoli and writing the sermon that paid for the broccoli. I couldn’t hold a pen in my hand to write a check, so I certainly couldn’t start and finish a knitting project. I stopped playing the piano, because I needed what capacity my hands had to wash my hair and drive the car.

Because she had heard about Jesus, she came up behind him in the crowd and touched his clothes. She was thinking, If I can just touch his clothes, I’ll be healed. (Mark 5:27-28)

If someone had told me about a guy coming through town with miraculous healing powers, I might have gone looking for him, because it is not exaggerating to say I felt that desperate, desperate enough I wished I could hope for some kind of divine intervention, desperate for some supernatural power to exert itself.

I wished I could hope.

Jesus responded, “Daughter, your faith has healed you; go in peace, healed from your disease.” (Mark 5:34)

My mother was so passive in the face of illness, so receptive to her mortality as an alternative to inconveniencing everyone around her, so fearful of getting to the age her mother had been when a series of small strokes changed her personality, so determined to control as many things as she possibly could until she could not control anything at all.

So, when my illness came, I didn’t pray for physical healing. I approached my illness as I saw my mother approach hers, praying for serenity, putting myself in God’s care, but not asking for *too* much. Note I said above I “might” have gone looking for the healer. I don’t know who I am protecting with that kind of passivity. God? Myself?

I’ve gotten used to living with limitations, so it wouldn’t be accurate to describe me as desperate, as long as health insurance and prescription assistance keep paying for the unbelievably expensive medication I receive every six weeks. At most I pray, “Lord, I wouldn’t mind feeling better.” God knows, there are plenty of people with more to bear than I, and for them, I pray, and I believe. I have Jairus’s part down.

So I wonder how it would feel to go out into the street, to press through the crowd, to do it believing with the most desperate kind of hope that touching God’s garment would make it all go away, would loosen the stiff joints, and reduce the swelling, and alleviate the fatigue, and take away the pain I don’t much allow myself to acknowledge. I wonder how it would feel to ask for healing for myself. I wonder what it would feel like to believe it’s possible for me.

I’m reading and blogging about Mark for Lent. Want to read along? I’m using the Common English Bible because it messes with my expectations of familiar passages. I am also referring to NRSV-based resources including The Jewish Annotated New Testament, and the New Interpreter’s Study Bible, as well as the online Greek interlinear Bible.

You can find the full schedule here, including links to earlier posts.

Denial is My Spiritual Practice, Reflectionary, Rheumatoid Arthritis, Rheumatoid Disease

What’s she saying?

Early Tuesday morning, I started reading The Wisdom of the Body: A Contemplative Journey to Wholeness for Women, by Christine Valters Paintner, who some of you may recognize as the Abbess of Abbey of the Arts, an early member of the RevGals blogging community. I met her ten years ago when she was visiting Maine, and we had lunch together in a coastal town. We talked about our work, and when she spoke to me about living with Rheumatoid Arthritis, neither of us knew I was weeks away from the crippling flare that would lead to my diagnosis with the same disease.

In Chapter One, I read about Yin Yoga, and then I looked up when my local yoga studio offers it – Sunday morning, during church time – and then I thought about my lonely yoga mat rolled up behind the laundry hamper, and Jessamyn Stanley’s book, Every Body Yoga, with her great descriptions and photos of poses, and I put the book mark in and went on with my day.

(One of the ways I cope with having physical difficulties is pretending I don’t have them until I can’t fake it anymore.)

When I went to take a shower, the first foot in slid toward the far end of the tub. I grabbed for the bar on the wall but I could not stop myself, only hang on as tight as possible. Somehow I pulled the other leg in after me. Awkwardly arranged on the floor of the tub, with the water pouring down, I continued to hold that bar. I got my knees under me. Everything hurt, but nothing seemed to be cracked or split, and my head was still above the rest of me, other than that arm extended to keep clinging to what I considered the safest thing in my vicinity.

I spent a long time after my RA diagnosis trying to parse what happened to me, why I had to live with this particular condition, what it might mean for my vocation, my family, my life expectancy. I admire the way Christine writes about the wisdom of the body, but I find it hard to listen to mine. This week I don’t have much choice.

More like Yank Yoga...I’ve been joking about it, ever since I was sure I was going to be able to get up and out of the shower again. “I was reading about Yin Yoga, but that was more like Yank Yoga!” “I don’t think I’ll try out for that Senior Cheerleading class!” “I strained muscles I didn’t know I had!”

But it’s no joke that I was scared, scared enough to call my wife at her office, and scared enough sounding that she came straight home. It’s not joke that I’ve spent the past few days more aware of how my body feels than I usually let myself be. What’s she saying?

“Girl, slow down.”

I don’t want to hear that.

“I know, I know. You did a good job hanging on, though.”

I guess that’s something.

~adapted from my essay for the RevGals Weekly e-Reader~