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.
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 feetand 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.
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.
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.”
All the people were beside themselves with wonder. Filled with awe, they glorified God, saying, “We’ve seen unimaginable things today.” (Luke 5:26, CEB)
In the stretch of verses I read today (Luke 5:12-39), Jesus does the following unimaginable thing: he heals a leper by forgiving his sins, in front of a gathering of legal experts and Pharisees. It’s moderately amazing that he heals the man; he already has a reputation for making people well. It’s unimaginable that a person would presume to forgive sins.
Later he appalls the Pharisees and legal experts further by eating dinner with tax collectors.
Really, if he’s a good person, a man of God, why is he hanging around with those traitors? Why is he going out to dinner parties? He has already started to diverge from John the Baptist, although the question coming directly from his cousin happens later in the gospel.
I grew up with a lot of rules for behavior, particularly around the dinner table. I wonder if that’s one of the reasons I so loved the story of the man whose friends dug through the roof (according to Mark) or moved the roof tiles (in Luke’s telling) to lower him right into the room to see Jesus? Sometimes faithful necessity transcends the accepted rules of social engagement.
Today in our town, members of the local Muslim community are standing in front of the public library (as they are in many other public venues across the country), holding signs that say “Ask me anything.”
Jesus did this all the time. He went to the places where people gathered, and he responded to their questions. Some responded favorably, awed by his works and his words.
Holy One, help me to see the unimaginable transcendent good in the world rather than being caught in the everyday transgressive bad things I have been taught to note and avoid. Amen.
This morning we drove to the other side of town while it was still foggy out; I had an appointment for an upper abdominal ultrasound. After many years on methotrexate, my blood work began reflecting elevated liver enzymes last summer, and my new-as-of-last-week rheumatologist wanted a closer look.
A very nice technician took me back into the depths of the outpatient center and began the study.
“Take a deep breath, as deep as you can … Hold onto it … … … … Breathe. Excellent!”
I found the repetition reassuring. While I cannot control the medical “grade” I receive, at least I know that from a behavioral point of view, I cooperated to the best of my ability, held my breath as long as asked, and over and over received the affirmation, “Excellent!” A+, right?
It was a complete upper abdominal ultrasound, so it took a while. Just when I was feeling more relaxed, the technician had to press a little harder to get her angle, and I coughed. And coughed. And coughed. The student observing was sent for a cup of water. I half-sat up, awkward, en déshabillé. The technician never lost her calm, good-natured expression. We began again, and I was asked to roll toward her.
That’s when she asked what work I do. When I answered, her face flashed recognition; she said, “I’ve heard you preach, at Saint Thingummy’s! I remember that sermon; it might be the only sermon I’ve ever remembered. It was about the ocean.”
I tried to remember the sermon while maintaining focus on breath held and released. “Excellent!”
She asked if I would allow the student to take some extra pictures, as part of her training. Of course, I said. “She has beautiful kidneys,” said the technician to the student. “Why don’t you get me xyz measurements?” She left us alone.
Beautiful kidneys. I guess that’s something.
The technician returned to walk with me out to the waiting room. “Was it,” I asked, “about being knocked over by the waves?”
“Yes,” she said, “my husband remembers it, too. You have a way with words.”
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.
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 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.
One 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.
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’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!”
