You’d be amazed

You’d be amazed to know what happens when you sit down, shut up, and pay attention.

You notice things.  You finish writing a confessional blog about sitting with your grief, walk a few steps to your bed, lie down, open the book you have been reading on and off for over six months, and the very next words that you read are these:

Maybe grieving over plans changed is part of the plan to change us.*

Then, after sleeping for just a few hours, you hop in your car and turn on a podcast** to hear two women discussing shame and vulnerability.  You’re stunned because as they share their failures,  you feel somehow drawn into the discussion like you’re a member of the sisterhood of the fallen.

As the podcast finishes, you arrive at a restaurant to meet a  woman for lunch — someone you’ve never met before — she offhandedly mentions her struggle with autoimmune disease,  and before you know it, you’re choking out something like, “It’s so frustrating because I like to be a positive fun person, but right now, I don’t feel like that person.”

Then, a couple hours later, in a session with your therapist, you hear yourself recounting the most mortifying moments of your week when your child brought her friend to your house ahead of schedule to ‘surprise you’ and you made them leave so that you could finish cleaning and you weren’t joking. When the therapist says, “so we’re going to work on your need to be in control and your ability to be kind to yourself,” you sit in stunned amazement that 1) you actually confessed the story out loud and, 2) she gets you and this is only the second time you’ve spoken to her.

You leave your session, drive through Starbucks to buy a tall lemonade before picking up your four-year-old great nephew and taking him home for dinner.  After dinner you chat about serious things like whether or not a four-year-old can actually run faster than a race car, then hear your nephew, the four-year-old’s daddy, say “you are such a blessing to us” as he walks you to your car.

You drive home, wiping tears off your cheeks because you are overwhelmed at the richness of the day, walk into your house, plop down on a chair next to your husband, and try to give him some snippets that can somehow convey the way God spoke to you all day long, but you are so exhausted from the last twenty-four hours that you can barely make coherent sentences.

After a total knock-out sleep, you wake up and eat a bowl of oatmeal on the way to your physical therapy appointment. Then, the angel who is your therapist places her hands directly on the exact spots that have been screaming for attention.  She just barely touches you, but the warmth and intention radiating from her hands moves from your skin through your joints and directly into your heart.

It’s several hours later, after you have baked banana bread, prepared chicken curry, drank tea with a friend, choked up at the opening chapel service on your school’s campus, talked with three out of four of your children, made major financial decisions with your husband, cried over a minor miracle, started crocheting a new afghan, and laughed at the Weekend Update, when you realize that for the last two days God has been placing His hands directly on the exact spots that have been screaming for attention.  He has just barely touched them, but the warmth and intention radiating from His hands has moved directly into your heart.

That’s what happens when you sit down, shut up, and pay attention.

I think I might try sitting with this a little longer.

Blessed are those who mourn, for they will be comforted.

Matthew 5:4

*Ann Voskamp, The Broken Way.

** Jen Hatmaker’s For the Love, “Episode 2: Brenae Brown”

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Sitting with it

I literally have to sit here with it.

I would rather run from it, but I don’t have that option any more. I have to sit with it.

In my soldiering years, I was continually in motion. Dawn ’til dark.  I was picking up, dropping off, buying, cooking, cleaning, planning, teaching, grading, and when I could squeeze it in, I was literally running.  Though I was acutely aware that I had four other humans living in the house with me (who else was I picking up, dropping off, buying, cooking, and cleaning for?), I rarely sat still very long to actually look at them, listen to them, watch them, hear them.

I have to sit with that now.  I’d much rather be running.

When one got migraines, went off to school, and then developed an eating disorder, I didn’t stop what I was doing.  No.  I drove to emergency rooms, packed boxes, drove miles, dropped off, made appointments, picked up, and kept moving.

When another joined the military and started jumping out of planes, I didn’t sit down and think about what that meant.  No.  I bought supplies, cooked farewell dinners, drove to a bus, dropped off, and kept moving. I can’t even remember if I wrote letters.

When another was brutally assaulted, I was so busy moving I didn’t even realize it had happened. For almost two years. And when I finally found out, still, I didn’t stop what I was doing, sit down, and grieve.  No. I grabbed broken pieces, dropped them in the passenger seat of the car, and drove them to someone who I thought could put them back together again.  And I kept on moving.

I have to sit with that now.

I didn’t choose this.

No.  Even when disease started crawling into my joints, I tried to keep moving.  I trudged through long days trying to manage responsibilities and ended up collapsing at home at the end of each day.  All my good hours were spent in hot pursuit while my hours at home, with the ones who needed me most, were spent in a daze of pain and fatigue.

It’s been over three years since I admitted the need for change. In those three years I have tried again and again to return to my former ways, but I can not. This disease is literally slowing me, sitting me down, and forcing me to face the things that I have not wanted to face.  It’s forcing me to learn new ways.  And, still, I resist.

I try, futilely, to keep busy.  I have crocheted a hundred scarves, hats, afghans.  I have put together probably a million puzzle pieces. I have read thousands of pages of print.

But, without fail, fatigue comes, and I must stop the busy-ness and turn to stillness. And even when I am exhausted, as I am right now, it’s as though I fight against rest.

The past several nights I have limped to my room lugging heated packs that I drape on my neck, hips, back after I’ve awkwardly lowered myself into bed.  Then begins the battle of shifting and moaning and repositioning that sometimes lasts several minutes but tonight lasted so long that all the images kept playing out over and over on the HD screen that is my imagination. Finally I groaned myself out of bed.

Come on, Kristin. Sit with it.  Admit that you missed so much. Acknowledge that the ones you love have hurts that you haven’t wanted to see. Grieve that. Cry.

Acknowledge that you couldn’t do it all.  You couldn’t soothe all the hurts.  You sometimes didn’t even try. You can’t undo what was done.

And the hurts keep coming.  The car needs servicing. The dog is aging and ill. A laptop isn’t working. Can’t a girl get relief from some of this pain?

And then comes the realization that the physical pain is a symbol. A tool.  A gift.

Man, I hate to admit that it’s a gift.  But without it, I would still be running. I would still be accumulating regret.

The illness hasn’t solved my problems, but it has revealed some.

And as I see them, I am finally taking the time to sit with them and cry. And lately my tears seem to have no end. They keep coming as though they just have been waiting for the opportunity.

I’m trying, really trying, to sit with that.  I believe the healing will come in the grieving. So, I’m going to take some time to grieve.  Soldiering me wants to schedule the grieving for Mondays at 10am for the next three weeks and be done with it.  Sitting still me isn’t in a rush.

I’m trying to sit with that, too.

There is a balm in Gilead to make the wounded whole;
There is a balm in Gilead to heal the sin sick soul.

Writing Trouble

Since I wrote Sunday’s blog post about my recent experiences taking Cosentyx, I’ve heard remorse humming through my being.  I mean, why do I always have to go ahead and say it all?  Why can’t I stop saying EVERYTHING.

A few weeks ago we were at a family reunion and one of my nephews sat down next to me with his son and a paper plate covered in various colored cubes of finger jello. Because I love his son, and him, I said, “Mmmmm, jello!”

My nephew, who with his son was consuming bite after bite of the jiggly treat, said to me, “Yes, but you don’t like jello, do you, Aunt Kristin?”

“No, I am not a fan.” I answered truthfully, as I seem always compelled to do.

My nephew grinned as he recalled a time, some years ago, when he said I had gone off on a ‘rant’ about how jello has “no nutritional value whatsoever.”  As he said it, I could hear myself on just one of my many diatribes.  He, and another of my nephews, also now a father, watched me for a reaction. When I said, “Man, sometimes I wish I could just shut my mouth,” they both laughed out loud.

I am that aunt.  Ok, let’s get real. I am that human.

I am compelled — yes, driven — to fill in the empty spaces with (so many) words.  And, guys, it can be embarrassing.

How many times riding home from an event with my husband have I said, “did I talk too much? did I say anything offensive or that I need to apologize for?”   In recent years, my husband has answered with a kindness, “Kristin, just be you.”

I, in case you don’t know me, am a person for whom no number of words, it seems, is ever too many words. I love to read them, listen to them, write them, and speak them. This week, the first in my self-imposed month-long preparation for fall classes, I have read literally thousands of words every day.  I have jotted notes to myself on stickies. I have listened to podcasts. I have had multiple conversations,  both virtual and in person, about language and pedagogy.  I’ve asked questions, made lists, and edited syllabi. At the end of these long text-filled days,  you would think I would be ready for a break.  Nope.  This word-nerd then watches Wheel-of-Fortune and Jeopardy, plays Words with Friends, and then reads for pleasure for an hour or two before sleeping.

I guess the fact that I love words and language so much is a blessing since I have made the teaching of English, especially writing, my career. However, sometimes my compulsion to put so many words — particularly those that expose my struggles — on public display, causes me to feel anxious, regretful, and downright insecure.  Why can’t I be one of those people that moves through social situations with a calm reserve?  Why can’t I listen to the conversations of others replying simply, “Oh, that’s interesting.”

More to the point of this blog, why can’t I stick to topics that are uplifting, that celebrate God’s faithfulness, that don’t expose my struggle, my weakness, my — gasp — troubles? This mantra, this hum, has been trying to distract me all week.

“Write a follow-up. Write a retraction. Go back and edit.”

Be quiet, I say. Can’t you see I’m trying to plan my courses?  Can’t you see I’m trying to focus on best practices for teaching others how to write? 

“Yeah, why don’t you go ahead and teach them since you’re so good at it?” the snide voice replies.

Hush. 

And then, this morning in the middle of a text on writing theory, I saw this:

“Trouble is the engine of the narrative.”*

I stopped in my tracks.  Wait, who said that?  Jerome Bruner, noted educational psychologist, and apparently also, for me, a voice calling out in the wilderness of text.

“The trouble is a violation of the legitimate, the expectable, the appropriate.  and the outcome of the story depends upon seeing legitimacy maintained, restored, or redefined.” *

Suddenly, in the middle of my study and preparation, I felt like I was in church.  Indeed, all of life is a grappling with the “violation of the legitimate” and the longing to see “legitimacy restored or redefined.”

The legitimate, expectable, and appropriate of my life — and surely yours — has been violated time and again — sometimes by circumstance, sometimes by others, often by my own doing.   My story includes troubles such as divorce, eating disorder, chronic illness, and myriad poor choices and betrayals.  Yours might include any of a variety of other troubles.  Together, we are all walking through troubles of many kinds, and as Ann Vosskamp says,

“More than anything, [we] don’t want to feel all alone in [our] unspoken broken.”**

And that, I have to confess, is what compels my incessant need to share.  I hate to admit that this self-proclaimed soldier longs to feel connection with others who are also struggling — who also have troubles.  But I do.  I long for it.  And I do experience it.

Sometimes I am able to find that connection over a cup of tea with a girlfriend.  We share our troubles and our victories.  We are honest, and in that honesty, we find community, support, connection. Other times, I need the luxury of words in print — the time that it takes me to type each letter, think through each sentence, and delete two or three false starts.  I need to process the trouble through text; that’s just who I am.

Its an unexpected bonus that sometimes my need to type out my troubles results in a forged bond with someone with whom my words resonated — a person who also, more than anything, doesn’t want to feel alone.

We are not alone. We are all broken.  We are all longing for restoration, and when we see it, we celebrate it. As we wait for it, if we are willing to expose our wounds, our brokenness, we are often surprised by the blessing of connection with other wounded broken souls.

Carry each other’s burdens, and in this way you will fulfill the law of Christ.

Galatians 6:2

*as cited in Graham,  Steve, Charles A. Mac Arthur, and Jill Fitzgerald. Best Practices in Writing Instruction. The Guilford Press, 2013.

**Vosskamp, Ann. The Broken Way. Zondervan, 2016.

 

Trials

One month without writing. I had every intention of jumping back into routines.  Fresh from my time away at the beginning of the summer, I wrote three days in a row, and then the whirlwind — the 5-week summer course I taught, visits from all of our kids and our grandbaby, and a full-family excursion to see both sides of the family.  I might’ve still managed to write a little, but in the midst of all that activity, I did a new medication trial.

My new rheumatologist, who thankfully reasserted my psoriatic arthritis diagnosis, said I should try Cosentyx.  “It’s a relatively new drug,” she said, “and it has helped a lot of people with psoriatic arthritis.”

“What’s the down side?” I asked.

“Nothing!” she assured me.

Skeptical, I did my own research. I googled and queried online groups.  It seemed that everyone agreed with my doctor — the risks and side effects were minimal.

Mm-hmm.

I wish I would’ve gotten a rash. Or stomach pain.  I did get what other patients call, “a temporary spike in symptoms,” but I also had another, more bizarre reaction.

Cosentyx is injectable.  Once a week for five weeks, you use a syringe or a ‘pen’ to give yourself a 150mg dose of this drug. I’m nothing if not dutiful, so I started the day I got home from grading the AP exam.  One quick click in the right thigh.  I didn’t notice anything until the next day when around 4pm I felt like I needed to lie down and be done for the day.  I wasn’t too worried;  I am often tired.  It is not unusual for me to be in my pajamas by 7pm, so I did what my body told me and rested for the next couple of days. Then I was back to normal.

The next Sunday, I did one quick click in the left thigh.  Again, nothing immediate, but the next morning, I got out of bed barking orders, complaining, and overreacting to every little nothing.  Ok, still, I wasn’t too concerned.  I’m known to be a bit crabby, and this ‘mood’, like others I’ve had in the past, lasted about 48 hours and then seemed to wane.

Next Sunday, next click — this time in the belly.  It was the Fourth of July weekend. And I was starting to see a pattern.  I had to teach on Monday, July 3rd for the summer program I was part of.  I got up and grumbled around the house, complaining that I was the only one who had to work, the only one who cleaned up around the house, blah, blah, blah.  My family observed me from afar.  They were starting to catch on, too.  I barely made it through my class.  I was not interested in being there, neither were my students.  I went home and barked at my family and put myself to bed early.  The next day, some friends invited us over to their pool.  I agreed to go for the sake of my family.  I figured I would be less aggressive if I was in front of witnesses. And, these were close friends who were aware of my health issues and also aware of the new drug.  They were champs. They distracted me and fed me and my family.  True heroes.

Next Sunday, next click — the other side of the belly. Again, Sunday night was fine, but Monday morning I was already in a funk when my husband called me from his annual physical to tell me that he had to go to the ER for an EKG.  I rallied the troops — I sent my kids to him while I readied myself to teach and pushed pause on my emotions.  I transitioned to full soldier mode when he called again and said he had to have a heart catheterization right away.  The next twenty-four hours, which had been the hardest on this med in the previous weeks, were a whirlwind of distraction.  My husband’s tests eliminated heart disease and any blockages and suggested the need for my husband to go on — wait for it — a medication trial.  (He has had not further symptoms, thankfully.) By the time he was home from the hospital, it was Tuesday night and I was almost back to normal.

Next Sunday, next click — back to the thigh, but this time, we had a house full of visiting family.  I had no issues on Sunday night.  Maybe I would be ok.  After all, during the previous week with the medical distraction, I had kept my rage in check.  Certainly I would be able to control my tongue in front of house guests.  Nevertheless I warned them in advance while hoping for the best.

It came out of nowhere.  Unbridled venom.  I spewed.  Then the backlash of remorse and embarrassment.  Apologies, and then, wham! The second wave.  I felt desperate.  I mumbled explanations and left the house.  I was going to isolate myself until the storm passed.  I spent the next six hours alone.  I had a book, but I couldn’t read.  I had my laptop, but I couldn’t write.  My mind was swirling frantically.  I worried over every decision past, present, future.  I cried.  I raged.  I fumed.  It was terrible.  After dark, I slithered back home, showered, and put myself to bed.

The next morning, we attended a funeral for a friend where tears released any remaining emotions, then I taught my class.  Afterward, I made a meal, and by dinner time I was able to join the family around the table.  I was still careful to speak very few words for fear of saying something barbed or pointed.

By the next day, Wednesday, I was pretty much back to normal.

I am now two weeks away from the last dose.  And two weeks away from the next dose. After the five loading doses, I switch to once-a-month injections.  I’ve called my doctor. She’s “never heard of” this type of reaction.  I contacted the manufacturer.  They are “following” my case.  My doctor wants me to continue the course, if I can, to see if Cosentyx will eventually help me.

That’s the other kicker.  This med does not give immediate relief from pain, fatigue, or psoriasis.  People have varied results.  Some have noticed improvement after the loading doses.  Some after the third month.  Some after the — gulp — eighth month.

Is it worth it?  I don’t know, because right now I don’t have any relief.  None.  I had, as I mentioned, a spike in my psoriasis, pain, and fatigue. That, coupled with the bizarre emotional reaction, is what I have noticed as a result of this medication.

Nevertheless, I am going to press on.  I am going to take the next dose and not plan anything for the two days after the injection.  We are going to watch and wait.

Why? Because I am still hopeful that something is going to work.  I still believe that at fifty-one years of age I should be able to live a full life.  I still want to teach during the day and go out to dinner with friends in the evening.  I want to be able to have Bible study with the girls in the morning, teach my classes, and then be conscious for dinner with my husband.  I am hopeful that I will be able to lie down at night and sleep without groaning every time I have to reposition myself.

It feels a bit selfish when I put it like that, I guess.  I mean, psoriatic arthritis is not life-threatening.  It is only life-altering.  And, as I have mentioned in this blog, my life did need altering.  I am not angry that I have this disease, but I do want to pursue a path to healing. And, I think, for me, the healing may need to come slowly so that I don’t abandon all the lessons I have learned in this chapter.

 

 

Romans 12:12

Be joyful in hope, patient in affliction, faithful in prayer.

Applied Learning

In the spirit of learning from my lessons, let’s apply the last two blogs to my current reality.

Fact #1 – I can’t plan for everything.

Fact #2 – I’m not in control.

How do we live in the tension of recognizing these facts while living out our daily realities?

My current reality is this: I just returned from three weeks away from my home.  I intentionally didn’t plan any work for this week — not even tutoring — because I knew I would need a week of recovery.  Autoimmune disease is such that any stressor — good or bad — can cause a physiological response.  Flying can cause a response. Eating a delicious Cuban sandwich on fresh – delicious –  glutinous bread can cause a response. Working seven days in a row in an unfamiliar environment can cause a response.  Seeing an old friend can cause a response. Taking a detour can cause a response. Eating sorbet — before or after lunch — if it is out of the routine, can cause a response.  (Yes, in the past three weeks I have done all of those things.)

A ‘response’ can mean different things to different people.  For me, a ‘response’ is typically any of the following — fatigue, eye inflammation, increase in pain or fatigue, or, if the stressors are cumulative or particularly intense, what I call a ‘knock down’.  I got ‘knocked down’ a couple of times during the vacation. It’s really not pleasant.  I usually get a pretty solid headache, gastrointestinal distress, systemic pain and fatigue, and usually, the symptoms are so intense that I can’t sleep.

In the past five years, I have been knocked down enough times that I recognize the feeling and have come to take these episodes as reminders that I am trying too hard, that I am doing too much, and that I have to be mindful. I used to feel frantic during a knock down; now I lean in.  I fill a tub full of epsom salt water and slither in.  I lie there for as long as I can with a cool cloth across my forehead.  I drink a lot of water.  I take a homeopathic remedy called nux vomica (as recommended by my doctor), and I rest. I eat healing foods — rice, popsicles, scrambled eggs — and I prop myself in front of something mindless on the television. A standard knock down takes about twenty-four hours of intentional recovery.  Some have taken longer, some have resolved more quickly.

I fully anticipated a knock down during this week.  So, I planned nothing.  Well, not nothing. I planned things that would set me up for success in the coming weeks.

While stressors can lead to a ‘response’, intentionally proactive behaviors can build resilience, like money in the bank.  They don’t prevent a knock down, but they do build my core strength so that the likelihood of a knock down is reduced and the recovery from one is perhaps shorter.  What builds resilience for me?  Well, a regular schedule, for one.

If I follow routines — get up at the same time every day, eat the same breakfast (gluten-free oatmeal with coconut oil and honey has been a recent trend), drink the same drinks (one green tea followed by one black tea), exercise, complete a task or two around the house, have one or two social interactions, and complete one or two professional tasks, all while taking periodic breaks throughout the day — I build resilience.  If I am being proactive,  I have to create my to-do list with this in mind.  I have to ‘plan’ blank spaces into my day.  Margin is essential.

Intentional reading and blogging are perhaps more important steps to building my resiliency than I give them credit for. Long ago, I learned to override feeling with doing. Because I didn’t want to feel pain or get lost in any type of emotion at all, I busied myself. That is a temporary fix, but feelings don’t go away.  They get buried.  Deeply buried.  I have found that if I read a particular genre of books (I’ve referred to many of these types of writers in this blog — Ann Voskamp, Shauna Niequist, David Sedaris, Joan Didion, and the like), then I gain access to emotions that I long ago buried.  While I am ‘hearing’ and feeling the stories of others, I recall my own stories and am able to attach meaning to them.  The follow-up, of course, is this blog.  If, in the wake of reading and reflecting, I sit down at my computer here in the quiet of my little house by the river, I give myself time to process the emotions that have been stirred up.  For you teachers out there, the reading is the receptive portion of the lesson; the blogging is the expressive.  I, like most students, need both in order for the lessons to have any hope of sticking. (And, like most students, I need repetition of most lessons in order to achieve mastery.)

How did I get the privilege of the time that enables a lifestyle with margin? that allows for reading and processing?  The only explanation I have is that the One who has eyes to see me and who knows my needs better than I know my own, determined that because I would never plan this type of life for myself, He would plan it for me. I was living a life that powered through and led to an epic ‘knock down’.  He saw it, and in compassion, He set me down into a new reality–one that allows for margin, one that allows for reflection, one that allows for healing.  Which exposes the next lesson:

Fact #3 – I am held in the palm of His hand.

I am really trying to rest in this reality.  Muscle memory makes me want to jump up and start doing so that I won’t have to feel the pain that has been exposed in the stillness of this chapter.  However, the knowledge that comes through the power of the knock down coupled with the words of some key people that are speaking into my life right now remind me of the words of Elizabeth Elliot that Ann Voskamp quoted in The Broken Way :

…”out of the deepest pain has come the strongest conviction of the presence of God and the love of God.” [Voskamp follows with] The most crushing lie a life can hold on to is that life is supposed to avoid suffering, avoid loss, avoid anything that breaks.  Loss is our very air; we, like the certain spring rains, are always falling toward the waiting earth…

I embrace the knock down because His hand is holding me and leading me to a better life in this next chapter.

Psalm 103: 13

The Lord is as kind to his followers as a father is to his children.

Putting it in Practice

I’m beginning to think that lessons are never really learned, or as we say in the field, mastered, but rather that our lessons are practiced.

I’m picturing a small child sitting at a piano slowly fingering the do, re, mi, fa, so of a C major scale.  Over and over she plays, usually faltering at one particularly tough spot where the thumb has to cross under two fingers in order to hit all eight notes in the octave. Sure, sure, after hours upon hours of practice, the scale becomes easier, the rhythm more consistent and measured, but let that pianist take a month away from the keys, and almost assuredly, the falter will return.

The learning is only safe within the practice.

I’ve been blogging at this space for almost three years and I continually come back to the same lessons — the ones that my fingers need to rehearse over and over and over.  Perhaps the one that needs the most practice, the one for which my Instructor has utilized multi-modal approaches, is this idea that I can breathe — I can slow down — I can rest — I can be still.

One problem I encounter in learning this lesson is the fact that I had been practicing a different way for decades.  The old way was a rushing, plate-spinning frenzy of activity that involved checking items off lists, accomplishing tasks, and powering through no matter what was thrown at me.  I’ve often described this practice of mine as soldiering — task-driven, focused doing with minimal regard for relationship or self-care.  As a soldier I didn’t reflect or take time to decompress; I went on to the next mission as though my life depended on it. And, if you know me or have read my blog, you know that I was ultimately given a medical discharge — diagnosis? chronic battle-fatigue.

So, per orders, I’ve been undergoing job retraining for almost three solid years.  It’s been cyclical.  I rest and recover, then, feeling restless, I get busy.  I try for moderation, but since my historical practice has been frenetic, I usually devolve to that pre-set.  I end up sick, of course, so I back off and review the lesson — I can breathe — I can slow down — I can rest — I can be still.

The layers of instruction involved in my practice of this lesson are many.   I am sure I am not even aware of all of them.  First, and most obvious, is the actual physical slowing of my body. I feel as though my major joints of propulsion — my hips, shoulders, feet — have somehow been coated in a rigid rubber-like compound that limits movement. The compound has, it seems, been grafted into my bones in such a fashion that if I do find a way to make the rubber pliable enough to allow movement that is too fast, too insistent, or too prolonged, the grafting sights become irritated and inflamed like a newly healing surgical site.  The pain then slows me and reminds me that I can breathe — I can slow down — I can rest — I can be still.

The second layer of instruction is delivered through my practice of yoga.  So much about yoga reinforces the lesson I am trying to learn. For seventy-five minutes I stay within the confines of a very small space — 24″ x 68″ — thinking about my breathing, being very intentional about every move I make.  Rushing is not allowed.  Multi-tasking is impossible.  It takes all of my attention to hold warrior two with my right knee at a forty-five degree angle, my right heel in line with the arch of my left foot, my arms extended as though drawing an arrow across a bow, my gaze looking across the middle finger of my extended hand.  Once there, I breathe; I rest; I am still.  This practice, which was absolutely foreign to me in my former life, makes me feel stronger than any butt-kicking and name-taking ever could. Yet, in this strength, I am not calling the shots; I am trusting the voice of the instructor and moving only where she tells me to move. She assures me that I can do this — I can live this way even when I step off the mat.

A third —  and certainly it cannot be the last — layer is my reading list. The reading in my pile comes from a variety of sources: from a member of the breakfast club Bible study I attend, from my child as a Mother’s Day gift, from a summer reading list for some of my students, and from my YouVersion daily Bible reading plan. Despite the varied sources, the message is resoundingly the same — I can breathe — I can slow down — I can rest — I can be still.

Last week I saw my new rheumatologist who is offering a trial of the medication Cosentyx.  As I wait for the prior authorization to come through, I find myself wondering if this drug will break up the rubberized coating, free my joints, increase my energy, and allow me to do a little more.

Seriously.  I am actually hoping for that. Sigh.

So, I was sitting with the breakfast club the other day, sharing this news about the potential drug trial, when one of my friends asked, “Kristin, how would you like us to pray?” Surprising frustration rose in me; I think because I realized that what I was hoping for is in direct opposition to what I have been trying to learn. I snarled, “I don’t even know, because if this drug works, I know that I will go right back to doing too much.  I’m practically doing too much already, and I’m in the middle of a flare!” My poor friend, she hasn’t known me too long and probably isn’t accustomed to my surliness.  She said, “Do you guys need the money that badly?”  I reflexively burst out, “Not at all!  I mean, sure, we could use more money, but that is not how we live our lives.  We don’t make decisions based solely on money.” I was stunned at my clarity and embarrassed by my tone.

I am the most reluctant of learners — the little girl who needs to be nudged back to the piano bench, a finger poking her between the shoulder blades. Why do I have to practice, I whine. I understand all the notes in the scale;  I know where my fingers belong! However, if I ever want to get past these darn scales and on to playing some real music — enjoying the freedom and bliss of playing outside of the practice — then I have got to stick to the practice.  I have got to keep rehearsing the truth that I can breathe — I can slow down — I can rest — I can be still.

Why? Because I can trust the voice of my Instructor.  I can stay in a limited space, listen to His voice, and believe what He believes about me — that I can do this; I can live this much richer connected way.  I want to learn this lesson so well, that even if this medication works, even if I am free of pain, and even if I regain my energy, I won’t go back to my soldiering life, but I will live in the freedom that I have been given to breathe, to slow down, to rest, and to be still.

Psalm 46:10

 Be still, and know that I am God…

Mutual Friends

I have underestimated the power of friendship.  If I sit and think about all the people I have loved or been loved by over the years, I have to admit that I have not been a very good friend.  I mean I have had the kind of friends who drive hours just to meet me for lunch.  I have had the kind of friends who drop what they are doing to stay with my kids for the weekend.  I have had the kind of friends who, after having not heard from me for months, will pick up the phone and continue a conversation as though it was started five minutes ago.  But I’ve not always been that kind of friend.

Rather, I’m sometimes the friend who screens calls, is too busy to grab coffee, and who leaves church during the last song just so I can avoid talking after the service.  Sigh.  I can call it introversion if I want, but really, I’m just not always a great friend.

So, before I get bogged down in guilt and regret, let me share with you what I’ve learned from some of my friends in the past week.

I meet with a group of gals one morning every other week. We call ourselves The Breakfast Club. We are reading through a book together.  We gather to share insights, to pray, to eat, and to encourage one another. Last week, I was headed to this group with an overwhelming emotional burden.  I knew we were supposed to discuss chapter 4 of our book, but I didn’t even take the book with me. Instead, I hijacked the study, shared my burden, and asked the others to just sit with me in my grief.  They sandwiched me between them on the couch, heard the story, and wept with me.

Over the weekend, I gathered with 120 other pastors’ wives from across the state of Michigan. Most of us only see each other once a year, but this sisterhood is strong. We come from diverse backgrounds, we are in different stages of life, and we have a variety of experiences,  but for one weekend a year we laugh together, eat together, sing together, and study together.  In the midst that community experience, sisters share stories. They bear one another’s burdens.  They encourage one another.

Yesterday, on my fourteenth day of this autoimmune flare, feeling the need for some support from others who could relate, I posted on a Facebook group for those who suffer with psoriatic arthritis. I asked a question.  Just one question.  Within moments the responses started.  In the last twenty-four hours, twelve women have responded with information, encouragement, and shared experiences.  Several of these women have been continuing the conversation with me.  I picture us all in our beds or on our couches, feet propped, joints iced or heated, phones in hand, gathering strength from one another. I’m in Michigan, another is in New Jersey;  one is in Australia, another is in the state of Washington.  We are different ages and surely have different personalities, political bents, and religious beliefs.  We have never met or heard of each other before yesterday, but we are buoyed by one another.

When I was in college, I took a couple of semesters of sign language, and still, a hundred years later, some of the signs stick in my head.  One, in particular, is the sign for ‘friend’. Like other signs, the sign for ‘friend’ requires movement.  One index finger is hooked over the other —  a weight depending on the other finger to hold it.  The fingers then change places.  Each finger takes a turn bearing the weight of the other.  I need this visual from time to time.  Too often I am willing to be the top finger, the one that depends on the other to hold me up.  Or, I clench my fingers into a fist, determining that I will rely on no one, thank you very much.  I forget the beauty in the mutuality of friendship.

Yesterday, I opened the mail to find a thank you note from one of my breakfast club friends.  She thanked me for sharing my burden with her last week. She said, “thank you for inviting us to cry with you.”  I was overwhelmed by her thoughtfulness.  Instead of allowing me to feel like I had used the group for my benefit, she implied that my request for support had been a blessing.

That’s how friendship works, isn’t it?  We, sometimes without even knowing it, support and are supported by one another.  And, in this mutuality, we are encouraged. We are reminded that we are not alone.

It takes some risk to invite someone into your life, to allow them to see your vulnerability, your cares, your weakness.  But be encouraged; in the sharing, in the asking, you are inviting a response — a response that builds a bond of friendship.  And let’s be honest, life is much better because of our friends.

Galatians 6:2

Carry each other’s burdens, and in this way you will fulfill the law of Christ.

 

 

Rube Goldberg

rube

You’ve seen a Rube Goldberg machine haven’t you?  It, according to source-of-all-sources, Wikipedia, “is a deliberately complex contraption in which a series of devices that perform simple tasks are linked together to produce a domino effect in which activating one device triggers the next device in the sequence.”

Artist and engineer, Rube Goldberg, drew many of these machines, like the one posted above, I think, to poke fun at humanity and our tendency to take too many steps to accomplish a simple task.  It’s just like us, isn’t it, to create a contraption that involves two people, a kitchen timer, a series of pulleys, and fire, for heaven’s sake, to get an olive out of a jar.

I was thinking about Rube Goldberg earlier today when I started piecing together the series of events that was involved in securing an appointment to get a third opinion on my medical diagnosis. You’d think it might be as simple as taking the darn lid off the jar, reaching in, and grabbing an olive, wouldn’t you?  Pick up the phone, touch a few numbers on a screen, ask a question, put a note on the calendar.  Easy.

But not really.

I’ve put the process off for a while.  Over twenty months ago, my then rheumatologist told me, not for the first time, that since she didn’t agree with my former rheumatologist’s diagnosis of psoriatic arthritis but rather thought I had fibromyalgia, there was no longer any need for me to be seen by rheumatology.  In fact, any primary care physician could manage my pain with prescription NSAIDS.  I should, she said, attend a workshop on fibromyalgia at the university and come to terms with my diagnosis.

I didn’t agree.

I had, and still have, three other members on my team. (I have written about this before.  If you want to meet my team, click here.) They supported my decision to disagree with the fibromyalgia diagnosis.  So, for twenty months, I have worked with this team and have been functioning quite well, as long as I keep my Kristin dial set at about 50-70%.  If I keep my self at a reduced level of functioning, inserting yoga, rest, physical therapy, chiropractic care, healthful eating, and regular walking, I have a manageable level of pain, psoriasis, fatigue, etc.

The problem is, that after a while of 50-70%, I get a little restless.  I think to myself, “Hey, self, you feel pretty good.  It probably wouldn’t hurt if you had three social engagements the week that you are planning to go out of town on a retreat.  I’m sure you’ll be fine.” Yeah, I say things like that to myself and I believe them. Still.  After almost four years in this adjusted reality.  Sigh.

Well, if you read my last post, you know that for about the last six weeks I have pushed myself to function consistently between 70 and 80%.  About 10 days ago, I “fell” pretty hard, and I’ve been hobbling along, still trying to keep the dial set at about 70% ever since. No surprise, I’ve still got significant pain, sustained eye symptoms, and the kind of fatigue that causes me to fumble with words, collapse on the couch, and sleep sometimes 10-12 hours at night.

So I got to thinking, as one does when she’s packed in ice, maybe I should give rheumatology another try.  Maybe 50-70% is my sweet spot; maybe, as I’ve been saying, I do my best caring and listening when I slow myself down enough to notice what’s happening around me rather than constantly pressing full steam ahead.  But maybe, just maybe, at fifty-one years old, I should explore the possibility of improving my health so that I can function at say, 80-90%.  Wouldn’t it be worth a try?

I’d had this thought before the crash, too.  In fact,  I tried to have my last rheumatologist re-examine my file.  In the large university where she dwells, I have to reach out to her through an electronic portal.  I did. A month ago. No reply.

So, last week, when I was face down, I crawled over to my laptop (figuratively, of course) and requested an appointment with her.  They gave me her next available — three months from now. Sigh.

So, I Googled rheumatologists in my area and called one that is in my vicinity.  They are scheduling four to five months out. The receptionist suggested I call another nearby practice since they have more docs on staff and might not have such a long waiting list.

Let me just say here that I really don’t like talking on the phone. I make exceptions for my parents, my siblings, and my children, but when it comes to businesses or, worse, doctor’s offices, I try to avoid phone calling like the plague.  The fact that I was willing to pick up the phone twice in one day last week is evidence of the fact that I was indeed miserable. I felt so badly I was willing to call not one but two doctors’ offices.

And you would think, like I did, that I was pretty close to getting the olive out of the jar. No, I had miles to go, my child, miles to go. The second practice said they were indeed taking new patients, and they were scheduling in the next month.  All I needed to do was get a referral from my doctor and fax my medical records.

Those were the words that Rube was waiting for. You see, my primary doc, a DO who has coached me through homeopathic remedies, advised some nutritional changes, and has prescribed the fabulous physical therapy described here, recently relocated her practice and reduced her office hours.  I sent three emails before I got a reply.  I’ll admit that that last one may have had a tone.  Ok, it definitely had a tone, which is why she called me back and left a message. She asked me to send her a detailed message fully explaining why I wanted this referral. So, I sent email number four. It was a page long.

Then, I tried to request medical records.  Here’s the thing — the new doctor’s office said they needed my medical records faxed to them. My two prior rheumatologists’ offices said they could only email a record. I plead with the new office.  After all, I had two zip drives on the desktop of my Mac.  I could send them my full record from January of 2013 until now — every test, every x-ray, every prescription — in a couple of clicks. Nope.  They “don’t receive email.”

I shared my plight on Facebook and two friends came forward with a plan for how I could use a free website to convert my documents to a fax right from my laptop.  Who knew?

So, while all those gears and pulleys were doing what gears and pulleys do, the weekend arrived and I knew I wouldn’t hear whether or not my primary care doc would give me the referral until Monday.

Saturday morning, after yoga, I was running a few errands when a friend texted me.  She and her husband had tickets to a concert that night.  They couldn’t attend due to illness, would we like the tickets.  My husband and I exchanged a few texts and decided that yes, since going to the concert meant sitting with several other couples from our church we would go.  It would be late, but we were planning on attending the late service the next morning, so it should be fine. (This is how people with chronic illness make decisions, by the way — always measuring.)  A little while later, one of the other couples who was attending the concert texted to say that several were meeting for dinner first, would we like to join.  Well, I mean, we’ve got to eat, right?  These are people we don’t know well; it would be good to get to know them better. I’d be fine to go out for dinner and a concert. (Yes, this is me, continuing to press limits even when I’m already down.)

Why am I telling you about dinner and a concert?  Because the weirdest twist was added to the Rube Goldberg machine.  Eight people at a table and my husband and I end up sitting next to a physician with the same genetic marker that I have. I don’t usually bring up genetic markers over dinner, but he did.  It was weird.  We shared stories and frustrations.  At a dinner we weren’t meant to attend before a concert that we hadn’t planned on.  The next morning, after Easter worship, this same physician waited for me at the back of the church and handed me the names of two rheumatologists at the practice I was trying to get a referral to.  He had researched them when he got home the night before and thought that of all the doctors at that practice, these were two he would recommend.

Monday morning, I had an email from my primary care doc.  She had sent the referral. Today, Wednesday, I got a phone call from the new doctor’s office.  I pulled the recommended names out of my purse while I was on the phone with the receptionist and took a deep breath before I asked if there was any chance that my appointment could be with one of them, who just happens to not only be a rheumatologist but also an optometrist.

And just when I was starting to think that the whole thing would come crashing down, that I wouldn’t get my olive after all, the receptionist booked me with that specific doctor for an appointment just under two weeks from now.

Rube Goldberg? I think not.  I know only One who can take a very frustrating and seemingly hopeless situation and make it work out better than I had asked or imagined. And do you know what? The elaborate machinery of it all, the Divine intervention of it all, has dispelled my anxiety about going to one more doctor, telling my story one more time, and risking the possibility that she won’t have any answers for me at all.

Because I know who does have the answers, and, because of that,I am not afraid.

Romans 8:28

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

 

 

 

 

 

I’ve fallen, and I’ll eventually get up

It couldn’t have been the women’s retreat over a month ago. It probably wasn’t the day trip over Spring Break.  Or the hours of tutoring. Or teaching two classes. Or two recent back-to-back road trips. Or the fact that I haven’t found a free hour in the past month to do any blogging.  No, not one of those things slammed me to the floor.  In fact I was standing up straight and moving around freely even through this weekend’s musical that went way past my bedtime and through the day-long festivities yesterday at our church. Not only that, I woke up today, planned two classes, graded some papers, taught on my feet for two hours and then gave a private lesson before coming home at 5 and making a double-batch of caramel corn. I had two loads of laundry folded and the ironing board set out when I finally admitted that I could do no more.  I grabbed an ice pack and found my way to the floor.

I stayed there icing through the news, Wheel of Fortune, and Jeopardy.  Then, I switched to heat for The Voice.  The ache was deep in my hips, sacrum, and sacroiliac joints. Nothing was dulling the edge.  Glass of wine?  Tried it.  No help.  Then, although I have been committed for over a year to no NSAIDS or other pain meds, I finally caved around 8:30 and took 400 mg of Ibuprofen.  An hour later I took 400 mg more.

I put myself in bed and willed myself to sleep.  No chance.  It’s been a while since my pain, which usually fluctuates between and 3 and a 6 out of 10, has climbed the scale up to what I would call an 8.  I’m calling it an 8 because I can still move — slowly and with audible involuntary groans — from standing to sitting to lying, but I can’t stay in any of those positions for very long before I determine to try yet another strategy.

Around 11:45pm, I climbed into the tried and true epsom salt and baking soda bath.  The deep ache persisted.  I stayed there for more than 30 minutes, trying to give the magic a chance to work.  Finally, I admitted one more defeat, crawled out of the tub less than gracefully, dressed, ate a banana, and thought to myself, “Have you found a limit, then?”

Just yesterday, a good friend said to me, “You need to find some time to rest.” My husband, bless his heart, also gently reminds me and then lets me figure it out. He knows that I want to seem ‘normal’, even if temporarily.  The longer stretches I have of doing well, the more I question the validity of my limitations. When I begin to doubt my limitations, I attempt to accomplish even more.  It’s a vicious cycle.

Anyone with a vague diagnosis or an invisible illness will tell you that we are our biggest skeptics.  Although we may have very difficult days, characterized by extreme fatigue, insistent pain, or a rash that erupts (right on my face, thank you very much), we also have days, weeks, and sometimes up to a month or more, when the symptoms seem not so noticeable.  We begin to question ourselves, “Surely, you aren’t really as sick as you think; certainly you can see one more student and sit through a play on a Saturday night. Toughen up a little.” It’s as though our worst symptom is amnesia — the forgetting of the consequences that come from forgetting.

When I forget to pace myself, I may do alright for a few days, or a week or a month. However, if I keep forgetting, I will eventually get a reminder. I’ve had many over the last month. When I sleep for over 10 hours in a row, that’s a reminder that I’m depleted and I probably need to take a few slow days.  When I get a psoriasis or eczema breakout, that’s a reminder. I call it the ‘slow simmer’. The symptoms are beginning to bubble up, and if I don’t turn down the heat, they are going to reach a full boil. When I notice that I have to take stairs one foot at a time, I’m probably too far down the path to avoid the crash. Yesterday, when my friend, who has noticed my pace, gently nudged my memory, I said, “Yes, if I don’t willingly take a break, it will be thrust upon me.” And in a very speedy fulfillment of prophecy, here I am.

It’s been over four years now that I’ve been living in this strange reality — the reality that was named, and then unnamed,… That’s part of the struggle, too.  I don’t know what to call this ‘thing’ that I have.  People ask me. Often. And I give some kind of mumbled reply about autoimmunity blah blah arthritis blah blah eyes blah blah skin blah blah.  By then they are more confused then I am.  They don’t understand, because neither do I, why I choose not to eat gluten or dairy if I don’t really notice a difference when I do.  If I try to explain that no, I don’t drink coffee because it cancels my homeopathic medicines, again, I just hear myself sounding like the teacher in the old “Peanuts” cartoons. Blah, blah, blah.

So, why am I writing about this at 1 o’clock in the morning? Because that’s what I have. Writing continues to be the way that I think through all of this and try to find the meaning.  And yes, I realize, I just have to go back a post or two to the last time I wrote about how blessed I am that God has provided this season of slowness, that He has allowed me time and space to be aware, to be available, to just be.  But just like every other gift I’ve been given, sometimes I don’t appreciate fully it.  I want to take it back to the store and see what I can exchange it for.  I think I’m going to find something better, you know?

If I go just a few posts further back, I will be reminded of the drawbacks of soldiering. Just typing that word calls me out, doesn’t it?  I don’t even want to go back to the first paragraph I wrote here today, because that’s what I’ve been trying to do — go back to my soldiering ways.

If I don’t stop writing here, I’ll start drawing parallels to the ancient Israelites…and it’s already 1:15 am and I’m already at over a thousand words.  So, go ahead and draw your own conclusions. By now, I’m sure you’re way ahead of me.

As for me, I repent. I’ll try to get some rest. And then I’ll probably cancel my tutoring for tomorrow.  Because sometimes even retired soldiers need a little R ‘n’ R.

Matthew 11:28

“Come to me, all you who are weary and burdened, and I will give you rest.

 

 

Making Up for Lost Time

During all my years of soldiering — of butt-kicking and name-taking — I was in constant motion, often simultaneously cooking, doing laundry, answering email, talking on the phone, and granting or denying permission to one of my children.  I got a lot done.  It seems that I was able to keep a clean house, feed a family, teach hundreds of students, and arrive most places fully-clothed for quite a few years. The down side? Very little time to reflect — very little time to examine options, consider outcomes, or feel.

I’m making up for lost time. Obviously.

In days of yore (Why, sonny, when I was your age…), I looked at the myriad obligations of the members of my family, the limited functions of two vehicles, and the tight schedules my husband and I kept, and I quickly formulated and executed a plan that accommodated everyone.  I planned my work and worked my plan.  “Here’s what’s happening today,” I would say, “You two will come with me to school.  After school, while you are at practice, I will get groceries. I’ll be back to pick you up.  When we get home, you’ll unload and put away groceries while I cook dinner.  Meanwhile, Dad will take you (other child)  to your different school.  He’ll go to work then pick you up after your practice, stop by Walgreens to fill your prescription, then meet us back here.  We will eat at exactly 5:30 because then, Dad has a meeting, I have parent-teacher conferences, two of you have homework to do, and the third one has to be at a study session on the other side of town.”  I would hit the start button and the plan would be executed.

Nowhere was there time for contemplation, negotiation, or revision.  We were in “go” mode.  In some ways, it was necessary for the season of life we were in with three kids in high school all at the same time, however, I think it could’ve been handled differently.  I think I could’ve let some stuff go.  I could’ve slowed down, allowed the kids to eat cereal for dinner more often, and let my laundry pile up.  I could’ve valued processing over producing. Contemplating over completing.

So, yeah, I’m making up for lost time.

I’m currently reading three books.  One is a book I am reading with my Bible study gals, Ann Voskamp’s The Broken Way.  Another was given to me by my physical therapist/counselor/friend, Doing Well at Being Sick by Wendy Wallace.  I also picked up Shauna Niequist’s Bread and Wine: A Love Letter to Life Around the Table with Recipes.  Why am I telling you this?  Well, it’s interesting to me that I have time to read three books, for one thing.  Also, I notice that I am interacting with these books, writing notes in the margins, going back to my notes, and thinking about what the books are saying to me. And, third, I am intrigued by the fact that these three books are speaking to each other.  It’s like they are three friends that said to one another, “Hey, guys, Kristin’s been still for quite a while now.  She might finally be able to hear us.”

And what are they saying?  Well, it’s not really shocking, because they are saying the same things that I have been discovering, thinking, speaking, and writing about for the past three and a half years.  However, I think what’s interesting is that I am noticing.  I am processing. I am digesting. I am not more interested in completing these books than I am in connecting with them.  I am not compelled to finish them; I am drawn to understand the meaning they have for me.

And really, the meaning is this — my soldiering is done. Even though I’m tempted almost every day to go back to that life, I am no longer capable.  God, in His mercy, has chosen a better way for me.  He has allowed limitations in my life — real physical limitations — that stop me from soldiering so that I can live a life that reflects, that feels, and that makes space for others. Because on my own, I wouldn’t have stopped soldiering, guys.  I would’ve keep right on kicking butts and taking names.  God had something better for me. Yes, you heard me right.  My “broken” life, my life with the limitations of chronic illness, is a higher quality life than my “un-broken” life.  In fact, my “broken” life is more whole than the “unbroken” one was.

It’s a paradox, to be sure. God is often paradoxical, isn’t He?  His brokenness makes us whole.  By His wounds we are healed. He turns our mourning into dancing. He doesn’t always make sense, but today I’m not going to question Him. I’ll just thank Him.

I Peter 2:24

“He himself bore our sins” in his body on the cross, so that we might die to sins and live for righteousness; “by his wounds you have been healed.”