Tuesday, June 22, 2010

The Spoon Theory

Apropos of our discussion regarding helping people "get it" here is the Spoon Theory alluded to by Wonky Warrior in her recent comment. It's from the blog But You Don't Look Sick. This is the best attempt I've seen at explaining the impact of chronic illness. Please read this.

An amazing RA Blog from Wonky Warrior

I'll have a new post up soon. I'm stewing on one. I've been a bit distracted with a flare in my elbows (which has limited my computer time) and with getting all my duckies in a row to go on Humira, my first biologic.

In the meantime, you must-must-must read this new blog. I suggest reading from the first post to the present to get the full effect. Ms. Wonky is indeed a Warrior. I laughed til I cried and sometimes just cried. Incredibly funny and moving and inspiring. Blessings on you, Wonky. Saving my best prayers for you.

Angry? You bet.

Here's a great post from RA Warrior. If you're a warrior, you'll be reassured that your anger is normal and that the studies suggesting an RA personality are bunk. If you're a friend or family member, perhaps you'll understand a little how autoimmune arthritis and the resulting fall-out in our lives can stir up emotions that you aren't used to seeing in the person you love.

Monday, June 21, 2010

Become an RA Warrior and Help Spread Awareness About RA

Those of us battling RA and related diseases owe a huge debt to Kelly at the RA Warrior website for her amazing efforts to raise awareness about autoimmune arthritis. Not only does Kelly gather the latest research on autoimmune disorders and place it in context, she also works tirelessly to challenge skewed and inaccurate portrayals of RA in mainstream media. (See more about the RA Warrior campaign requesting that Women's Day Magazine get it right by clicking here.)

Kelly also maintains a very active Facebook page where folks living with RA find hope and support. Kelly does all of this while waging her own battle against RA. She is my heroine and a huge role model for all of us who seek to live a passionate and hopeful life with chronic illness.

You can help by entering RA Warrior's contest. It's as simple as a post to your facebook page and/or blog. Please help us raise awareness about RA! It will make a difference for those of us who are warriors every day.

Tuesday, June 15, 2010

Why good people say stupid things

Last night someone posted a comment on my recent post about the seriousness of autoimmune arthritis and the frustration we feel at those--from family members to strangers--who don't understand or support us. You can read the comment here, but the gist--as I read it--is that if we just patiently educate people, most will understand. Those of living with RA/PA/AS and related diseases know that it's not that simple. I started to reply in a comment but it was turning in to a rather lengthy post. So here is my response to all those who think it's just a matter of education:

I wish it were as simple as you describe. But if it were, the blog roll at the right would be much shorter and 11 other women would not have found so much resonance in my post. The problem goes far beyond ignorance. Explanations alone do not suffice. Some of the women who commented have been educating others about autoimmune disease for decades--to no avail. "It's just a little arthritis" is just one of the comments we hear on a regular basis. You can see ten more rude/oblivious comments that people have actually said to me at this post: Cancer and Crow's Feet: A Lesson in What Not to Say.
It would be one thing if we only heard these things from strangers. But sadly even people who care about us do not often take the time to really learn what we are going through. For many of us, the disease is invisible. So unless you live with us, you will generally see our best "face"--the face we put on when we need to go out in the world. You won't see us lying awake at night in pain, struggling to do simple tasks, running out of steam part way through a very long day. So even friends and extended family don't see the real face of autoimmune arthritis. Then, when we say "no" to something, they think we're being difficult or lazy or antisocial or flaky. It's fascinating to me that people who have known me for years find it easier to assume there has been a change in my character than a change in my physical ability.
With strangers and acquaintances, or people who meet us for the first time after our diagnosis, it's worse. They have no "old Kris" to guide their interpretations of my behavior so it's much easier to jump to character flaws instead of learning about the disease.
I've been wondering why this is so hard. Why can't people grasp the medical facts of our illnesses and translate that into compassion? I think the problem has something to do with the human reluctance to engage suffering. To really understand our situations--why we can't travel on the same schedule we used to or why we can't make that 8 am meeting--people would have to understand and acknowledge our suffering. Most people don't want to do that. To authentically engage someone else's suffering when there's nothing you can do about it takes a certain emotional and spiritual fortitude that not everyone has developed.
I minister in a neighborhood saturated in suffering. For some folks who come to serve with us, it's too much. They are fine if they can write a check to support our free community dinners, or if they can wash dishes in the kitchen. But if you ask them to sit down with someone very unlike them and really hear their story (which will contain a dose of suffering that "middle-class" folks can't understand or even imagine), they look like deer in headlights. Some become frustrated because try as they might they simply can't understand the lives of those living in poverty. They can't fix it. And they can't even fathom it, so they blame the victim or shrug their shoulders and walk away. It's a relatively rare few who can offer love and validation to people whose lives they can't understand. But if you do that long enough and lovingly enough, you do begin to understand--at least a little. Unfortunately, few are cut out for that kind of persistence in the face of suffering.
I think something similar is at work in most people's responses to those with chronic illness. When people see suffering, they want to fix it. So they offer up ridiculous advice and cures. Or, realizing they can't fix it, they find a way to disregard it. Sometimes they resort to character assassination. The "get a job" response to someone living in poverty and addiction has a cousin in the "pull yourself together" response that many of us encounter on a regular basis--even from those who love us. Other times they attempt to diminish and deny, as in: "it's just a little arthritis." Sometimes these inane responses may even be a misguided attempt to make sense of what we tell them. The person who says "Oh, I have rheumatism in my left knee" may intend to show understanding. Of course, they don't know what they don't know. And their comment becomes a punch in the gut that denies our experience. These are just some of the reasons good people say stupid things.
If the answer were education--and patience on the part of those who suffer--this world would be a different place. There would be a safe and warm bed for every homeless woman in our city, little children in West Central Spokane wouldn't turn up at our church's coffee hour in their underwear because they are hungry, and people facing the fight of their lives against disability and early death would not have to bear the judgments and disregard of those who don't get it.
This is not to say we give up. We must keep speaking up and speaking out. But no matter how clearly we communicate and educate, people will misunderstand and disregard us. And for the wounds we suffer--from our diseases and from people who don't get it--we have one another as balm. We have, in each other, other human beings who do understand what it's like to have our own bodies turn against us and turn our lives upside down.

Saturday, June 12, 2010

A week in the life of an arthritis patient

One of the surprises I've experienced living with autoimmune arthritis has been how dismissive people can be. It's just a little arthritis, people say. Well, here's some tangible evidence of how a little arthritis changes a life.

These are the new additions this disease has brought to my life--one week's worth:

Supplements, pain meds, sleep meds, and chemotherapy. Yes. Chemotherapy. That little vial is methotrexate--a drug which was developed from mustard gas and is used to fight cancer in higher doses. That's how serious autoimmune arthritis is. What you don't see: the pneumonia and shingles vaccines and the TB test I had this week in preparation for adding another med after some "wait time" to give the vaccines time to do their work. In three weeks, I'll begin injecting Humira every other week in addition to weekly methotrexate.

I'm grateful for every thing in this photo. I have insurance that helps me pay the doctors, labs, and pharmacies. And I'm thankful for advances in medical research which have created new treatments that may reduce my disability and add years to a life that otherwise would be shortened by the chronic, systemic inflammation that accompanies autoimmune arthritis. Compared to those who began their fight with arthritis decades ago, when treatments were few and less effective, I have a good dose of hope to go with all these meds.

If I could add one thing to this weekly routine, it would be the understanding and patience of friends and acquaintances. It's hard to understand if you haven't fought the day-in, day-out battle that arthritis brings. Arthritis is real. Arthritis is serious. The kindest thing you can do for me, or anyone else dealing with this disease, is to treat it like it's something--not nothing. It is most definitely something.

Saturday, June 5, 2010

The Long View

Last Sunday, rain clouds skirted us all day before breaking loose their burden into this unseasonably wet and cold spring. The skies mirrored another kind of weather: how I’ve been feeling—physically and, to some extent, emotionally—as my pain has worsened again.

Since being diagnosed with autoimmune arthritis, one of the hardest things to accept has been how freaking long it takes to measure progress. At first, I was puzzled and irritated when the rheumatologist scheduled my regular appointments two months apart. Didn’t he understand how much this disease was messing up my life? And when I had my “Mac truck” flare (after 6 weeks of apparent drug-induced remission) he took it in stride, called in a prescription of prednisone, and said he’d see me in a couple of weeks at my next scheduled appointment. I could barely walk. For him it was all in a day’s work.

His relaxed approach to what felt like an emergency bothered me until I realized it just takes that long. With the medications used for autoimmune arthritis—DMARDs and biologics—it takes one to two months before you know if they are doing a damn thing. And overlaid on this can be an ebb and flow of symptoms that are unrelated to any conscious interventions by patient or doctor. (For more on this, see RA Warrior’s description of common patterns of RA). In the midst of wondering whether a new treatment is working, a few good days raise your hopes. A string of bad days dashes them.

Six weeks ago the PA increased my dose of methotrexate. Give it a month, he said. And at five weeks, I started feeling better. Not all better. Not like the miracle of my first response to the metho. But I was taking less Vicodin, sleeping better. I dared to think it might be working. Maybe one more little tweak could get me back to near-remission. Maybe I could avoid adding a biologic and just switch to injectable metho which gives you 30% more punch for your dose compared to oral.

I felt better for several days—just long enough for me to start trusting it—then the pain and fatigue ramped up again, right back where I started. At my next appointment three weeks from now, if things haven’t gotten significantly better, the doctor will likely recommend adding a biologic.

The unpredictability of this disease has been teaching me about living in the moment. And yet there is a tension between being present to the “now” and living the long trajectory of this disease. It reminds me of how the stories in our Scripture often have integrity of their own, but find their depth of meaning in the narrative arc of the larger Story of God and His people. A good day may mean the beginning of remission, or it may mean nothing. It’s only in retrospect that the story begins to take its shape. But like many of us, I’m addicted to the long view.

A few weeks ago, I found a therapist who specializes in chronic pain and illness. (I’ve decided that I stand the best chance of living well with this disease if I tend every aspect of my health—from dental to mental—with consistency and thoroughness.) She asked me to start charting my pain against things like sleep quality, physical activity, and emotional or mental stress to see if I can uncover any patterns to the pain. I’ve tried this early on and found paying close attention to the ups and downs in my disease activity tended to tip me into depression. My therapist has encouraged me to try again, but to do so with as little expectation as possible. That is, to treat this as an experiment which may, or may not, reveal helpful conclusions. The challenge, then, is to avoid trying to make sense of every moment as it happens. Right now, I’m just gathering data.

We are creatures desperate for context, for meaning. Diseases like autoimmune arthritis don’t follow a play book. My challenge at the moment is finding a way to be proactive without craving a long-range plan. More and more, I’m finding moments where that seems possible. I count as progress those times I’ve found a certain peace in lying awake, sleep held at arm’s length by pain, the night stretching on and on. After I’m done fretting about what the lack of sleep will do to me the next day, after I’m done being pissed off—again—that I have this disease, and after I release—again—the worry that this pain is the outward sign of the inward destruction of my joints, after all this, I’m sometimes able to simply be in a way that I’ve never experienced before. In those moments, my pain doesn’t need to have meaning. It simply is. And there’s a trust that this long night contributes somehow to the arc of my life and to the way this life fits into God’s Story.

Monday, May 31, 2010

Sunday, May 23, 2010


Well, what a week it's been. On Thursday and Friday, I finally hit the wall of myself. I spent about 48 hours in the emotional breakdown lane as I finally took stock of what I've lost.

Most of my arthritis friends have something on their blogs about life before arthritis. There are often references to the "old me." At the risk of having some smart ass point out that the old me is really the young me, I thought I'd share a little of what I used to be able to do--because to grieve something well, you have to name it and acknowledge what it meant to you.

The old me could kayak all day--the Upper Coeur d'Alene was my favorite . . .

The new me hopes I'll be able to kayak flat water--a few hours would be great.

The old me could hike for hours at a stretch . . .

The new me can walk about 20 minutes--slowly--before the pain gets bad enough to make me stop.

The old me could sleep on the ground, then chase a toddler around a campground . . .

The new me can't sleep without Vicodin, Neurontin and sometimes Benadryl--four to six hours at a time when I'm lucky.

The old me could cut down a Christmas tree in snowy woods . . .

The new me ran out of energy to decorate my tree-lot tree this year. It stood there naked for three weeks, then my husband took it down.

The old me and my husband built this wall--four feet high and 100 feet long. Each of those blocks weighs 76 pounds. The old me could lift one by myself.

The new me has to tell the baggers at the grocery store that I have a "bad back," then carry the bags to the house one at a time. My husband carries the laundry up and down stairs and opens jars and bottles for me.

The old me could stay up until the wee hours of the morning to accomplish a task--in this case, a cake shaped like a police car. I could do whatever it took.

The new me has about 5 good hours a day before the fatigue sets in and the pain ramps up.

The old me could eat pasta without consequences. Then I could run off the calories--three miles a day.

The new me avoids gluten, dairy and soy which contribute to the overactivity of my immune system. The new me can't run.

The old me planted a garden.

The new me struggles to tend it.

The good news is: the 48 hours I spent venting was strangely freeing. It enabled me to do a thorough inventory, and once the losses were truly counted, I was able to tally those things about the old me that haven't been lost--the ways "me" continues to exist.

For a hard core do-er--that is, someone who defines herself by what she can do rather than who she is--this is more than a small victory. This illness, in stripping me of physical abilities, had completely upended my identity. Grief hid me from myself for a while--for grief is so very thick and dark--but I'm back now. At least, I'm back in the ways that really matter.

Thanks to my dear friend Goat who helped me come up with this list of "old me" characteristics that have less to do with what I could do and more with who I was (and still am).

The old me was/had:

chutzpa--yep, still there
irreverent--oh, yes
quick wit--well, people laugh at me regularly, does that count?
fearless--that's never been strictly true, but I fake it well
integrity--I hope so
never dropped the ball--well, sometimes I do now, but I'm finidng it can be a good thing
transparent--you're reading this blog, aren't you?
didn't like to fail--still don't, but I'm also learning to redefine failure
listens well--learning to listen to myself as well as others
not afraid to begin, harder time ending--still true, getting better at endings
kind--I think this part of me is back
ridiculously bad boundaries--yeah, this one might be worth losing

So what's left to count? All the ways the new me might be getting better, gentler, wiser. This is what I'm praying for--all that painful-to-learn stuff that you really shouldn't pray for unless you mean it. Patience. Compassion. Insight. Depth. No one wants to live with a chronic illness, but, hey, as long as we're here . . .

Wednesday, May 19, 2010

An Exercise in Optimism

This weekend I got in a bit of a snit. If I'm going to hurt all the time, I thought, I might as well get something accomplished. Basically, it was a tantrum. So I decided to finish putting in my vegetable plot. It's only 4 by 16 feet, but this season small is good. Last season I had pain and devastating fatigue, but no diagnosis. The garden went neglected. This year, I have pain and slightly less devastating fatigue. But I also have a diagnosis, some helpful tools, and Vicodin. What more does a gardener need?

I'm titling this post "An Exercise in Optimism" because with the disease I never know week to week, day to day, or sometimes hour to hour, exactly what my body will let me accomplish. The garden I plant today my languish untended tomorrow depending on what the disease does. Lately I'm thinking that optimism really should have a verb form. So often optimism is an action, not a feeling.

Currently my biggest challenge is the sacroiliac joint--where my hips attach to my spine. (This is why the rheumatologist is keeping the psoriatic arthritis diagnosis on the table. The S-I joint is a common site for this particular autoimmune arthritis.) So bending, squatting, and getting up and down can be a challenge. Luckily, the involvement in my hands and knees is still mild, so for now I can get by in the garden using my kneeler. It has handles I can use to lever myself up, and because the kneeling platform is a couple of inches off the ground I can use it even in heavily planted beds without crushing everything. Best of all, when you flip it over, it becomes a bench. Nice!

Isn't it great? And so Episcopalian.

And that nifty tool you see on it. The best weeding tool I've found so far. Weed fork and trowel combined. A serrated edge for sawing through little roots or cutting off baby weeds below the surface. A nice thick grip that's easy on the finger joints, and that little curvy part that keeps it from slipping when you push it into the soil.

Of course, these accommodations don't change the fact that everything is different. Methotrexate makes you sun-sensitive, so sunscreen is now a must, not an option. I've never been able to do anything--gardening, painting, cooking--without ending up covered in whatever medium I'm using. So now I'm not just dirty after gardening--I'm greasy and dirty. But the biggest change is my sense of productivity.

Just about everything takes longer when you have arthritis, and gardening is no exception. Add to that a dramatic decrease in stamina and the limitations imposed by pain, and projects that used to take a few hours can take days or more. By working slowly and carefully, I planted my beans, set out my tomatoes, and replanted the spots where the early crops failed to sprout. But I still struggle with intense frustration over how little I accomplish. Then the grief reprises. Then the guilt--because I took the "old me" for granted, and because I'm such a whiner when other people are worse off than I.

The only antidote to this mental masochism seems to intentional gratitude--a truly challenging discipline for a Type-A like me who still doesn't want to admit that everything has changed. It's a bit easier to be grateful when I read my blog-land friends who have more advanced or more intense forms of arthritis and have long ago had to entirely give up activities they love. Even so, it's mechanical, the way I give thanks, but maybe God still honors that. Lately, I'm determined to give thanks especially for the moments that can drive me to tears--the moments spent lying in bed and slowly moving each part of my body so that I can get up, or the moments awake in the wee hours (in the spare room so I don't wake hubby) waiting for the clock to tell me it's OK to take another Vicodin. It's my hope that this "unconditional gratitude" will begin to work in me what St. Benedict called "conversion of life"--the transformation of my deepest self into more of God's vision for me.

So did I pay for my exercise in optimism? Well, yes, I did. The woman who used to work 8 hours a day in the garden has gone off somewhere, replaced by a woman who struggles with stairs after a two-hour stint among the tomatoes and peas. On Monday, the physical therapy aide reminded me to "work to fatigue, not to pain." But this athletic young man also assured me it takes time to make the adjustment. The gentleness of his voice said, forgive yourself, be kind to yourself. With all the advice being offered to me these days, I think that's the advice I need to take.

Friday, May 14, 2010

Staying Sane - from Lene Anderson @ Health Central

Waking up in pain. Going to bed in pain. Never knowing if tomorrow's going to be the day it comes back with such force that your life is shattered, sidelined again while you put everything on hold, while you find a treatment that works. Hoping you'll find a treatment that works, having waking nightmares in which you don't. No longer remembering the time Before, back when your body was your own. Fighting, always fighting, to live, to get better, to not lose function, to find hope, somehow. Living with rheumatoid arthritis is living with a relentless assault, not just on your body, but on your mind, as well. . . .

Read the entire post here.

Read more of Lene's writing @ The Seated View.

(Thanks, Lene. I needed this.)

Monday, May 10, 2010

Cancer and Crow's Feet: A Lesson in What Not to Say

My mother was dying of cancer—bald, one-breasted, and deep in the throes of chemotherapy—when one of her friends called her. One would hope she was calling to cheer Mom up. Not so much. “I’m sooo depressed,” the friend said. “I just don’t know what I’m going to do.” “What happened?” my mother asked. Her friend replied, “I woke up this morning and looked in the mirror, and I have crow’s feet!”

So far, my interactions with people who learn of my diagnosis have not been that gobsmacking. But people do seem to have a hard time knowing what to say to someone with a chronic illness—especially one as unfamiliar as autoimmune arthritis.

I try to avoid that awkward moment of disclosure. I’ve learned to tell the checker at the grocery store that I have a “bad back” so she’ll pack my bags lighter and put them back in the cart for me. I make good use of the phrase “health issues.” But eventually, when someone is a “regular” in your life, you have to tell them. And sometimes even near-strangers will corner you into confession, pestering you about why you can’t do something, or why you are limping, until you finally give in.

I try to keep it simple: “I have rheumatoid arthritis.” Because even though my rheumatologist hasn’t decided if I have rheumatoid, psoriatic arthritis, or both, it’s a phrase that at least some people recognize. I also try to steer the conversation away as quickly as possible. With some people, these precautions head off unfortunate remarks. But it doesn’t stop others from uninformed—even rude—comments.

I know that people don’t intend to be hurtful. These comments come from ignorance and the social pressure to say something, anything. But that “anything” often sounds like judgment or skepticism. So to help prevent those awkward moments, here’s my top ten list of what not to say.

All of these are actual comments people have made to me. (Some of them are even from dear friends who, like all of us, have experienced an unfortunate and momentary interruption of the mind-mouth connection.). My responses below have never been voiced. These are the replies I think of after the fact, but probably could never bring myself to actually say. Perhaps my unspoken responses—sarcasm and all—will provide a glimpse into how a seemingly innocent or well-meaning comment can be hurtful.

10 Things Not to Say to Someone with Autoimmune Arthritis
(And What I Wish I Had the Nerve to Say to Your Face)

10. I have a touch of rheumatoid arthritis in my left knee. No, you don’t. That’s like being a little bit pregnant.

9. You don’t look like you have arthritis. And you don’t look insensitive. But you are. Maybe I’m having a good day, or have a few hours left on my last dose of Vicodin. This is an invisible disease. Thanks for implying I’m a slacker.

8. You need to be careful if you’re taking [Advil, Tylenol, Aspirin]. It can really be hard on your [kidneys, liver, stomach]. That’s the least of my worries. The drug I’m taking is used to treat cancer. It was derived from mustard gas. It can hammer my liver and permanently damage my lungs. On the plus side, it enables me to walk. But thanks for the heads up.

7. Come on! Come have coffee with me. It will be good for you. Though I love you, dear friend, I have a limited amount of energy. Sitting in a coffee shop equals 2 fewer hours to cope with daily life. If you really want to spend time with me, help me weed the garden or clean house. We’ll get time together, and I’ll get some much needed help with the chores that I can no longer do on my own.

6. You should take glucosamine. It really helped my [insert single joint here]. The phrase “pissing in a hurricane” comes to mind.

5. You can’t possibly have arthritis. You’re too young. Really? Whew! I’m so glad this is all some big misunderstanding.

4. Have you tried [bee stings, liver cleansing, past life regression, colonics]? My [mother, sister, husband’s cousin’s ex-fiancee] swears by it. I have a great team of doctors, all of whom went to medical school. I can’t imagine why none of them thought of that.

3. My [insert single body part here] has been hurting for days. I can’t take it anymore. Shall I call the waaaahmbulance?

2. I have arthritis, too. Who’s your rheumatologist? Oh, not that kind of arthritis.

1. Is there anywhere to sit in your house that isn’t covered in cat hair? How sweet of you to notice that this disease has completely disrupted my life. There’s the vacuum. Knock yourself out.

Saturday, May 8, 2010

The Best Time to Have Arthritis, Or The Optimist’s Dilemma

Do you have any questions for the doctor?” I asked. I was making my lists—medications and questions—being a good patient.

“Just Is it ever going to get better?” Mark said.

The tenderness in his voice made my eyes brim. Yes, it all comes down to that question, doesn’t it?

The next day, I offered it up to D, the rheumatologist’s PA, apologetically: “I know what you’re going to say. But my husband needs to hear it from you. He wants to know if I’m going to get better.”

“Yes,” D said.


I’d expected a solid I-don’t-know because the only thing certain about my experience of autoimmune arthritis has been its uncertainty. We might be able to get you a remission. This drug is promising. We expect to slow your joint damage. We’re unsure exactly what kind of arthritis you have, we just know it’s autoimmune. If this doesn’t work, we’ll try something else. Might-promising-expect-unsure-if. A bouquet of guesses ribboned with equivocation. My daily experience of this disease has been just as muddling. Day to day, the symptoms vary. I can’t tell you on a Monday if I’ll be up for a Wednesday night outing.

Add to this, the confusion of scientific studies one can read on the internet. Estimates for natural (untreated) remission rates in undifferentiated arthritis range between13% and 53%. If I fall in that 47 to 87% who don’t get a natural remission, and I don’t take the drugs, I’m playing chicken with the power of the inflammatory process to create not only joint damage, but to wreak havoc with my internal organs and blood vessels. Another article referenced in RAWarrior’s blog suggests you might as well flip a coin when deciding which drug to take. Humira and Enbrel—the latest drugs I'm considering—both reduce (not eliminate) joint symptoms in about 50 to 60% of patients.

D continued, “You won’t always be like this. You’re not in a flare. What you’re calling the ‘mac truck’—that was a flare. But you’re not controlled either. It can take 2 years to find the right combination of drugs to control your disease. But you will feel better than you do now”

There is some truth to the annoying statement: “This is the best time to have autoimmune arthritis.” There are many more drugs. Joint damage can often be stalled or slowed, buying years or decades of active life. But I’d suggest that no time is a good time, thank you very much. The journeys of others with autoimmune arthritis—those I’ve known in person or via the internet—argue against D’s optimism. Most people don’t get a remission without the use of serious drugs with serious, sometimes permanent, side effects. Drugs stop working, requiring changes in medication. Flares come out of the blue and leave them bedridden for days or even weeks. Joints degrade, and new joints become affected. My “arthritis friends” tell me that even in a best case scenario I will never be the same.

All of this has me wondering about the role of optimism in autoimmune arthritis. Even when things are going well, I don’t tend to be overly sunny. But I still want to be an optimist. When the pain gets bad, or the fatigue overwhelms, or when I’m just tired of exerting so much energy to do things that used to be effortless, I want to stay smiling, energetic, and positive. It's just so easy to get discouraged and angry. Hell, there are days when I’d happily take “paragon of quiet strength.”

Even if I could flip the sunshine switch inside myself, I wonder if optimism the best long term approach to this disease. In his book Good to Great: Why Some Companies Make the Leap and Others Don’t, Jim Collins interviewed Admiral Jim Stockdale who spent eight years as a prisoner of war in Vietnam. Stockdale said it was the optimists who didn’t make it out alive. He told Collins: “they were the ones who said, ‘We’re going to be out by Christmas.’ And Christmas would come, and Christmas would go. Then they’d say, ‘We’re going to be out by Easter.’ And Easter would come, and Easter would go. And then Thanksgiving, and then it would be Christmas again. And they died of a broken heart.”

So I’m wondering how I might balance somewhere between blind optimism and despair—some place where I don’t ignore the reality of this disease but neither do I assume the worst. I’m wondering if this is what hope is.

Stockdale said, “You must never confuse faith that you will prevail in the end—which you can never afford to lose—with the discipline to confront the most brutal facts of your current reality, whatever they might be.”

I consider what prevailing looked like for Stockdale. When Collins interviewed him, Stockdale still limped on a stiff leg that had never completely healed from the 20+ sessions of torture he’d endured. Yet Stockdale told Collins, “I never lost faith in the end of the story. I never doubted not only that I would get out, but also that I would prevail in the end and turn the experience into the defining event of my life, which, in retrospect, I would not trade.”

I’m beginning to confront the brutal facts. Lately, there’s no such thing as a zero-pain day. Fatigue limits my “good” time to about 5 hours a day. I spend about 5 nights a week dealing with pain-induced insomnia in spite Vicodin and Neurontin, then sleeping away part of the morning. In the last week, I’ve finally accepted that the Type-A life I’ve lead to date is unsustainable. I will have to get help with my house and yard, limit my work at Holy Trinity to 5 hours a day, and drastically restrict my activities in the evenings when my pain and fatigue intensify.

It’s a work in progress. When I think of my "end of the story," of what prevailing might look like for me, I draw a blank. Chances are high that it will not look like a complete or permanent remission. The only thing I know for sure is that I will be changed by this illness, as Stockdale was by his imprisonment. I’m just beginning to see glimmers of the way this experience is transforming me—defining me, to use Stockdale’s words.

I guess this is where faith comes in. No pretty platitudes about God’s will, thank you. God doesn’t will suffering upon any of us. He does endure it with us in solidarity. In my better moments, I trust this illness to make me into more of God’s dream for me, something I definitely would not trade.

Wednesday, May 5, 2010

from the HT e-news this week, by yours truly

Peace I leave with you; my peace I give to you. I do not give to you as the world gives. Do not let your hearts be troubled, and do not let them be afraid. John 14:27.

I was a fearful child. All through those days, I carried an internal list of scary things, things that could hurt me—fires, burglars, snakes, spiders, hippies who might kidnap me—and at night my terrors unspooled into a long litany of prayers to a God who was something like a Grandpa with special powers.

A few years later, my fears found their perch as my family’s life unraveled into a tangle of alcohol and estrangement. I don’t remember if I prayed, but I learned to escape to the tree fort I’d inherited from my older brothers. Inside the kitchen, my mother poured out half her soda, filled the can back up with scotch, while I sat at the edge, legs dangling. Counting one – two – three – all the way to ten, and still I couldn’t jump. So I’d close my eyes and pick a color and vow that the instant I saw that color, I would do it.


I opened my eyes and my gaze caught sun firing the taillight of the horse trailer. I launched myself into space, dropping the ten feet to the ground, and landing in a good six inches of dried, musty manure. Then, I’d climb back up and do it again, and again, and again, each time pinning my fear to a place deep inside.

I’ve since been told that the image of a little girl leaping into a pile of horse shit does not make a particularly poetic metaphor. But looking back I understand what this otherwise anxious child was doing. She was toughening herself up, working her fear like a muscle, transforming it into something known and controlled.

In my teens, and again in my twenties, that illusion of control would shatter like tired bone. What I didn’t know then: any muscle, overdeveloped, can become a hindrance, a constant strain on the balance of the body or the soul.

What that little girl needed—and couldn’t get—was the gentle refrain in our Gospels: do not be afraid. It’s everywhere. We hear it from Jesus, and from the mouths of angels reassuring the lonely, the lost, the bewildered. Do not let your hearts be troubled, and do not let them be afraid.

The human heart is a muscle like any other. Overworked by high blood pressure, the muscle thickens. Enlarged and stiffened, it can’t move blood like it’s supposed to. It no longer fulfills the very purpose for which it was designed.

Not so different from our selves, how our essence changes as we toughen ourselves to abandonment, confusion, tragedy, judgment—all those things that make us afraid. It’s a small step from becoming strong to being hard and brittle. In our efforts to be invulnerable we can impair the very muscles God has given us for the care of one another—empathy, tenderness, compassion. In our attempts at self-protection we fail in our one purpose: to love God and one another.

Jesus offers us a different way, a different peace. This peace is not won by being smart, self-protective, or tough—by a reliance on the self. The peace of Jesus requires a counterintuitive letting go—a leap into the unknown of love. For how many of us truly know the depths of God’s love. Instead of girding ourselves against loss, he asks us to make ourselves vulnerable—to him and to one another. This is how we learn not be afraid.

Friday, April 30, 2010

How will you meet adversity?

I discovered this video on the blog arthritisfriend.com. Aimee, who was born without calf bones, had both legs amputated below the knee as an infant. In this talk, she reimagines adversity and disability and lifts up the power inherent in all of us.

She says, "Implicit in this idea of overcoming adversity is the idea that success or happiness is about emerging on the other side of a challenging experience unscathed or unmarked by the experience, as if my successes in life have come about from an ability to sidestep or circumnavigate the presumed pitfalls of a life with prosthetics or what other people perceive as my disability. But in fact, we are changed, we are marked, of course, by a challenge, whether physically, emotionally or both. And I'm going to suggest that this is a good thing."

Sunday, April 25, 2010

If only life had warning signs . . .

I was in pain, but that couldn’t fully account for my mood: crabby, desiring more than anything to be alone and unbothered, sadness welling up, tears pooling suddenly so that I’d have to blink blink blink to keep them in my eyes where they belonged.

Then she said, “I imagine you’re still grieving.” And I fell apart, sobbing in the middle of what was supposed to be a meeting about church business.

Back home, I googled “arthritis grief.” On Annette Beach’s blog I read: “Obviously the disease makes it difficult, but added to that is knowing the old Annette is gone and she’s never coming back”—again I burst into tears.

Grief, indeed. What a disappointment to realize that in the six months since my diagnosis all my courage and optimism was really denial.

Six weeks into my treatment with methotrexate, it had been like someone flipped the arthritis switch off. I was the old me again, nearly pain-free. Right on! I was beating this! Then, six more weeks and someone flipped the switch back on.

It began on a Saturday when I slept most of the day away—two stretches of 4-5 hours each. The next day, the pain started ramping up, and by Monday morning I could barely walk. When the pain didn’t let up after a couple of days, I finally emailed the doctor. He put me on a six day burst of prednisone (which, I discovered, totally messes with my emotions—think PMS with an emphasis on weeping). The prednisone hammered the flare, and I felt good again.

But then, in the weeks that followed, the pain and fatigue crept back in—this time in stealth mode so I wouldn’t recognize what was happening and bring in the big guns again. Add some discomfiting new symptoms—an electric current down my leg; a tendency for my left foot to drop so that I’d step on the side of it and just about put myself on the ground; and a sensation of cold on my left hip that had no correlation to the actual temperature of my skin. Every night, pain woke me, a stone in the center of my sleep. And the more exhausted I became, the less I could cope with the pain.

Undone by lack of sleep, I called the dr. again. He prescribed neurontin (a drug that works on nerve pain) and hydrocodone (vicodin) to get me some sleep. He also tested me for adrenal insufficiency—a sometimes after-effect of steroids which can cause fatigue and (WTF?!) joint pain. The results: adrenals armed and ready. So what about the pain? I asked. What pain? said the medical assistant. Helloooo!! Is anyone listening?

And that, my friends, is when the walls of denial began to crumble in earnest. This thing is not going away. My body has changed. The future I've imagined must be revised, except I don’t have any way of predicting the parameters of that future. Or, as my late mother would have said: Shit!

What does grief look like in a chronic illness? For me it looks like bitchiness, impatience, and spontaneous weeping, all tucked beneath a pasted-on mask that says, I am fearless, strong, and trustworthy, and all is well. But that mask is laced with cracks, and nothing makes people more nervous than when our social masks begin to show some wear and tear.

And then there is that blessed complication: the good day—or two or three—when the pain lets up and your joints feel lubricated, and you walk and stoop and turn like a normal person who doesn’t have to think about every movement to ensure you don’t stress a joint or increase pain. The clock runs backwards and your joints are 43 again. And you start to think maybe it’s not so bad, and really you’ve been exaggerating. Or better yet, maybe the doctor has it wrong. Maybe you’ve imagined the whole thing. Everyone has aches and pains, right?

But those good days are at best a tease, at worst the basis for total delusion. Sometimes this feeling—of being normal again—lasts a day or more, sometimes it lasts an hour. But it never lasts. And no matter how much analysis you apply, no matter how many explanations you invent, you can’t figure out why you’re hurting again. And with the loss of that good day or hour, the grief starts all over. And it’s intensified by the fact that you realize—again—that you have virtually no control over this disease and what it’s doing to your body. Sure, you can eat well, exercise, listen to the doctor, take the meds, but no one—not even the doctor—knows what the disease will do to you. You’re just along for the ride.

The only comfort I’m finding these days is the knowledge that grief does run its course. And while this kind of grief will run its course over and over again, the few folks I know with autoimmune arthritis—including my father—show me that one gets more skilled at navigating grief. At the YMCA therapy pool, J tells me that you never stop grieving. Every time you lose one more thing you get to do it all over again. And sometimes, it’s the little things, J says. She wobbles between two arm-braced crutches on an ankle so destroyed she must wear a brace to bear weight on it at all. Yet for J, grief undid her when she could no longer step into a car, but had to sit on the seat, then pivot her body around.

I understand this. The reality that it will never be safe for me to ride a motorcycle on my own, and that we’re not even sure if I can tolerate riding behind my husband—these things are discouraging. But it’s those increasingly common days when I have to sit down to put on my pants—as opposed to standing on one leg then the other—that make me want to weep. Please understand: it’s not the loss of that minor ability itself that I’m grieving. Compared to J on her crutches, my needing a chair to get dressed amounts to a big boo-hoo. Call the waaaah-ambulance. Rather, it’s what that loss of ability represents: a future that is largely defined by forces I can neither see nor control.

And really, we are all in that same boat aren’t we? At the mercy of unpredictable currents. But most of us get to pretend we have a hand on the rudder, and often we convince ourselves that the currents will generally be kind. Autoimmune arthritis strips that delusion away. No wonder there’s grief. But perhaps there’s also some value—some redemption, even—in being forced to face the reality of our powerlessness. I think of Saul on the road to Tarsus, his three days in darkness. I don’t imagine it felt good or safe until after the scales dropped from his eyes.

Saturday, April 24, 2010

Saturday Morning

Sometimes beauty is enough . . .