My Sweet Experience

As a new volunteer for Patient and Family Centered Care at the University of Michigan, I have been asked to share part of my story at Kellogg Eye Center to a group of new Kellogg employees.  What has my patient experience been like?  Since I am more accustomed to writing than to speaking, I thought I’d share what I plan to say here. 

In the summer of 2012, while my family and I were living in St. Louis, MO, I started experiencing joint pain.  I had been, up until that time, a full-time teacher, school administrator, mother of four, and avid runner.  I was a very busy woman in excellent shape, so when I first experienced pain in my elbows, I believed I had an overuse injury.  However, over the next several months, I began experiencing pain in my hands, feet, neck, and shoulders. The moderate sacroiliac pain and issues with my skin that I had dealt with for most of my adult life intensified.  When I began to feel so exhausted at the end of my work day that I couldn’t remember driving myself home, I started the long journey toward a diagnosis — a journey I am still on almost six years later.

You might imagine that this journey has involved visits to my primary care doctor, a rheumatologist, and a dermatologist.  Indeed, it has.  And, since I’m standing in front of you now, you have probably concluded that my journey has also included ophthamologists.  Correct again.

Throughout 2013 and 2014, my doctors were convinced I had psoriatic arthritis.  They had confirmed that I have the genetic marker, HLA-B27, joint pain, and psoriasis.  Although I did not have any inflammatory markers, they agreed that a diagnosis could be given in the absence of such evidence.  I was therefore treated with the standard course of medication: NSAIDs, biologics, and other standard pharmaceuticals — certainly I cannot remember everything I have tried.

In the spring of 2014, I was winding up the academic year, one daughter was graduating from college, and another was graduating from high school.  I was exhausted and in a significant amount of pain.  My rheumatologist decided to treat me with a prednisone taper to give me some relief during this very busy time.

I did experience relief; however, the combination of immunosuppressant drugs and steroids created the perfect environment for ocular herpes.  I woke up on Memorial Day 2014 with excruciating eye pain and extreme sensitivity to light, so I called my St. Louis ophthalmologist, Dr. Todd LaPoint.  He saw me right away –came into the office before a family picnic – and immediately got me started on a course of medication that got the situation under control.  I saw Dr. LaPoint several times over the next few weeks, but then another problem surfaced — I was moving to Ann Arbor at the end of July with a newly diagnosed chronic eye problem.  What would I do for care?

Dr. LaPoint said he would do a little research and get me a referral.  It wasn’t long before he suggested that I make an appointment with Dr. Sugar at Kellogg Eye Center.  He had attended a talk that Dr. Sugar had given and knew he was the best of the best.

I remember quipping, “Dr. Sugar?  I wonder if he is sweet.”

Dr. LaPoint replied, “He is!”

I want to tell you that almost four years later, I have visited Kellogg over twenty times, and I must say that Dr. Sugar is indeed sweet — one of the sweetest — and that Kellogg has been an oasis as I have wandered the desert of my medical journey.

I will certainly not recount twenty office visits for you, but I do have a few highlights I would like to share.

When you saw me walk up to the podium this evening, you might not have expected that I have battled chronic pain and fatigue. In fact, if you ran a battery of tests on me right now, you would find virtually no clinical evidence that I suffer.  Patients like me often meet health care providers who believe that there is nothing wrong with us.  We are hypochondriacs, pill-seekers, and whiners. Even well-intentioned doctors shrug their shoulders and say, “I don’t have anything to offer you.” Time after time we walk into doctors’ offices with concerns and questions, and we leave feeling humiliated and defeated.  Because we have experienced this so often, we often walk into doctors’ offices with our defenses up.  We expect to be judged, dismissed, and disappointed.

Since I’ve moved to Ann Arbor, doctors at U of M and St. Joseph’s have removed my psoriatic arthritis diagnosis.  One doctor says I have fibromyalgia; the other says I have degenerative arthritis.  Frustrated with the confusion I experience from this continually changing diagnosis, I discontinued the biologics and anti-inflammatory medications and spent a year trying out homeopathic remedies.  Finally, after years of trial and error, I am currently on a path that seems to be working — physical therapy, chiropractic care, lifestyle changes, and steroid injections.  I’m just a few months into the first significant relief I’ve had since 2012.

In the midst of that long season of struggle, I have had one recurrence of ocular herpes and  two rounds of scleritis.  Both of these illnesses are quite uncomfortable, so one day when I felt a slight change in my left eye, I called Kellogg and arranged to see Dr. Sugar.  When he entered the examination room he said, “How are you doing?” I answered, “I may have jumped the gun, but I just feel like something is wrong with my eye.”  I was already putting up my defenses, expecting Dr. Sugar to be like many other doctors I have seen; I could already imagine him saying  ‘there was nothing wrong with my eye’.  However, he didn’t say that.  Instead, he said, “I always want you to come in, whether we find something or not.  If you think something is wrong, I want to see you.”

It may have been during that same appointment, or it may have been at another one, when he examined my eyes and said, “I don’t see anything, but that doesn’t mean you are not experiencing anything.”  This may seem insignificant to you who practice medicine, but to those of us who suffer with invisible illnesses, finding a doctor who does not dismiss our complaints or deny our reality is rare and life-impacting.

In January of 2017, my husband and I were planning for a trip to Israel.  Because I had recently struggled with a round of scleritis, I was concerned about traveling abroad. What if I had a flare in Israel?  When I mentioned my concern to Dr. Sugar, he pulled out a pad of paper and wrote the name of a colleague– a cornea specialist — who practices in Tel Aviv. He assured me that if I had a problem, I should contact that doctor and he would be able to help me.

One weekend last spring, I woke up on a Saturday morning with pain in my eye.  I immediately called Kellogg.  The on-call doctor opened my file and said, “I see you are a patient of Dr. Sugar.  He likes to be called whenever one of his patients has trouble on the weekend.  Let me try to reach him, and I will call you back later today.”  Not fifteen minutes later my phone rang.  The on-call doctor had already spoken to Dr. Sugar who had given him a message to convey to me including the fact that a prescription was waiting at my pharmacy.

Surely you agree that Dr. LaPoint’s recommendation was spot on.

Let me just take a moment and share one other layer.  I am a life-long educator.  I have had students of all ages from early childhood up through college. One extra joy I experience at Kellogg is the mentorship I witness.  While some patients may be annoyed that a resident or an intern is in the room, I love witnessing the interchange of Dr. Sugar with these future-specialists.  His approach is intentional — I have seen him be encouraging with one resident and direct with another.  I have watched him peer through one side of a dual-microscope while a resident peers through the other.  He listens to the ‘student’ describe what he sees and points out anything he has missed.  It’s quite phenomenal to witness. I have remarked to more than one resident that they are quite privileged to learn from such a distinguished physician.  I do recognize that his standards are high, and that working under his supervision may not be easy, but I believe the experience they are getting just standing in the room with him all day long is among the best training they could receive in the nation.

I would be remiss if I didn’t mention that along with Dr. Sugar I have received care from others within his office including Dr. Shtein and many fellows.  Each time I have received quality intentional care that leaves me feeling heard and understood. I have not had one bad experience.  This is uncommon.

I have visited many health facilities in the past six years — both in St. Louis and in Ann Arbor.  I have met numerous health care professionals.  Kellogg is at the top of my list of a very few places that I actually look forward to visiting to receive care.  Please continue this tradition of excellence as you join the Kellogg staff.

Do not withhold good from those to whom it is due, when it is within your power to act. –Proverbs 3:27

Pacing

Last semester I was teaching three classes — three different classes. I loved it.  I interacted with students almost every day.  I was teaching writing, literature, and even a methods class — a class of future writing teachers.   I was steeped in theory and practice and I was loving every minute of it.

I had agreed to teach the methods class first.  I considered it a great honor to work with students who would one day be teaching others how to write.  I had high expectations of myself for what I wanted to expose these future educators to — instructional strategies, cultural considerations, and personal practices that I feel are important to instruction.  From the moment I agreed to teach the class I was fully committed to creating a high quality experience.

I had cleared the month of August to prepare for this class when I received a request to also teach one section each of composition and literature.  I opened the envelope and instinctively said, “You’ve got to be kidding me! Three preps?! That’s too much!”  But, instead of saying, “Thank you so much, but I think it would be best if I just taught one or the other,” I signed on the dotted line saying to myself, “It’ll be fine!  I’ve taught these two classes before; they shouldn’t require too much preparation.”   I was then informed that the English department had adopted a new textbook for the literature class which would necessitate a new syllabus and a new plan.  And, once I wrapped my head around the fact that I was going to be essentially creating two courses from scratch, I went totally rogue and decided to re-craft the composition class, too.

It just snowballed from there.  As I read composition theory to prepare for the methods class, I discovered strategies that I wanted to try with my own writing students.  As I tried new strategies with my writing students, I convinced myself to alter instruction in my literature class, too.  That’s kind of how I am as a teacher; left to my own devices, I keep tweaking and re-tweaking.  I don’t ever really find a groove to settle into.

So, as you might expect, the whole semester I was reading, thinking, planning, reworking, teaching, scoring, and conferencing.  I think it’s as close as I’ve come to being fully in the classroom again.  I loved the relationships I was building with students, I loved speaking into their writing, I loved leading classes, but guys, I gotta admit, it was too much.

I don’t think I even acknowledged it was too much until November, when I was asked if I would take a couple of classes for this semester and I reflexively answered, “Nah, I don’t really like that schedule.” I was only being asked to teach two classes three days a week, but I was sitting in the midst a mountain of work of my own making, and I instinctively grabbed the white flag and started waving with all my might.

Of course, three weeks later, when the semester ended, I second-guessed that decision  and heard myself asking the same old question,  “Well, then, what will I do?”

[Stop laughing at me!]

A weird series of events involving a car ride to Detroit, phone conversations with both of my daughters, and a few emails with a friend landed me back at Lindamood-Bell where I worked in the summer of 2015.  Lindamood-Bell is a private agency where students get one-on-one intensive instruction.  The incredibly rewarding work is based on brain research.  It’s quite remarkable — I have watched students improve their reading and/or comprehension by several grade levels in a matter of weeks!  On any given day, I might work with four to six different students, for an hour each,  performing tasks that are prescribed by a learning consultant based on the Lindamood-Bell model of instruction.

You read that correctly — I implement the plan; I do not actually write the plans.  Further, I do not do any grading or scoring.  I punch in at the beginning of my shift, work with one student each hour, then I punch out and go home.  Once home, I work on puzzles, I read books, and I find time to write.

All last semester, I found it very difficult to get to my blog.  I wrote with my students, as I always do, but that is a different kind of writing. When I write with my students, I model the process and produce whatever type of writing that I am asking them to produce — a narrative, a research paper, an argument.  That kind of writing builds my skill, of course, but it isn’t the kind of writing that I produce for my blog.

The kind of writing I produce for my blog is very personal and very restorative.  It’s the kind of writing that grows from deep reading, purposeful thinking, and sitting. (I discuss this in an early blog post you can read here.) I can’t produce this type of writing when I am overcommitted.  It’s just not possible.

When I started back at Lindamood-Bell in early January, I  committed to working no more than 20-30 hours a week.  Almost immediately, I found that I had space in my days, so I returned to my blog.  As I began to write again, I saw, almost immediately, how God continues to work in my life.

He gave me the option last semester to commit to one, two, or three classes. I chose three.  He let me see, again, what it is like to fully commit to the classroom for a season.  He allowed me to run on all cylinders as I tend to do so that I could see what I exchange for that kind of pace.  And then, he allowed me to have a moment of clarity last fall to say “no” to more adjunct teaching so that I could stumble back into the pace that He has been offering me since I moved into this next chapter. Finally, He nudged me toward the keys.

God works through my writing.  He speaks to me.  He says, when you slow yourself down long enough to put your words on a page, you finally hear what I’m trying to tell you. And what is He telling me today?  I think He’s saying, settle in.  Enjoy this pace. And, you know, I think I’m gonna listen.

Psalm 46: 10

Be still, and know that I am God.

 

 

 

How the Health are You?

A friend of mine used to ask me this every time she saw me. It made me laugh.  I was just a kid, and I liked how she, an adult, was playing with language and ‘getting away with’ saying a ‘bad word’.

Who knew, way back then, that questions of health would one day dominate my life?  Who knew that I would spend years trying to discover what the health is wrong with me and how I can remedy the problem or at least minimize its effects?

But guys, I have relatively good news!  After five years of trial and error — testing, medication, treatment, side effects, etc. — we have discovered a strategy that, at least for now, is reducing my symptoms!

Let me pause here and give my disclaimer that every body is different, no one treatment works the same for every person, and certainly this is just my story.  I am in no way suggesting that your strategy for managing your health is inappropriate or that you should alter it in any way.  

I haven’t written about my health since last summer when I was doing a trial of Cosentyx.  After a over a year of no medical intervention for my illness, which had been labelled psoriatic arthritis and/or fibromyalgia, I had gone to a new rheumatologist who, at least initially, promised hope for reduced pain, better mobility, and less fatigue.  She felt that Cosentyx was a miracle drug and that I would certainly see dramatic results perhaps even with the first dose.  I was so excited!  After four years of pain and fatigue that limited my everyday life, I was looking forward to ‘getting back to normal’!

Well, I did see a dramatic effect, but it was not the one I was looking for.  Cosentyx made me an emotional wreck — I mean a serious emotional wreck.  I could barely function, particularly when the doses were back-to-back in the initial ‘loading’ period.  I was irrational, depressed, impulsive, and downright mean.   Nevertheless, I continued through that initial phase hoping to strike the promised gold; it never surfaced.  I stayed on Cosentyx for six months with no real improvement.

My doctor, suspecting a different diagnosis of degenerative arthritis, next recommended that I visit a pain management clinic.  I have been very opposed to this from the start.  Remember that prior to this illness, I had been a pretty avid runner for about 10 years.  I had run 5-6 days a week and completed two half-marathons.  I was in pretty great shape up until I started noticing joint pain and extreme fatigue.  I did not want to resign myself to a life of pain meds — I wanted to get better!  I wanted to find the source of the problem, fix it, and get back to my life!  My previous doctor had also recommended pain management; that’s when I had decided to try  homeopathy.  Homeopathy offered me hope and agency but no true change.

Anyway, I digress.  Last fall, when my current rheumatologist recommended I go to the pain management clinic, she suggested I try a steroid shot in my sacroiliac joint — the biggest source of my pain.  This sounded different to me.  She was not suggesting that I take NSAIDS for the rest of my life or that I take opioids or some other form of pain medication.  She was just suggesting a steroid injection.  I was willing to give that  a try.

With the very first injection I noticed a change — I didn’t have such a high degree of pain or such dramatic fatigue.  In fact, I was moving around more easily and having more energy.  After my second injection a month later, my chiropractor and physical therapist both noticed structural differences — my spine adjusted more easily, my muscles seemed more relaxed, and my posture was more erect.  After the third injection just two weeks ago, I notice that I have more endurance as I move through my days and I sleep more comfortably at night.

For the first time in five years, I have noticed a significant change in my ability to function!

Now, I will say that I am cautious in celebration.  First, I am only two and a half months into this treatment.  I do not know how long it will last.  In fact, after the third shot, the medical team said that I should call them “as needed”.  What does that mean?  Will my relief last a month? Two months?  a year?  What I am told is that everyone is different.  Some people get relief for months; some get relief for much longer.

The second reason that I am cautious is that I do not want to go back to my soldiering ways.  My illness has helped me, through trial and error, find a better pace for my life. I don’t try to cram twenty hours of living into every day any more.  I find time for work, but I also find time to rest.  I have built boundaries into my life that never existed before. I have more time with my husband, more availability for my kids and grandkids, and more margin to manage the unexpected stuff that arises in life.  I don’t want to lose this balance as my health improves.

I still believe that this journey of the last five years has been a lesson designed uniquely for me.  The way I was living my life previous to this illness was a path of my own making — I was kicking butts and taking names. I was not caring for the others in my life or, least of all, myself.  I don’t want to lose what I’ve learned in any level of recovery.

So, for now, I will continue the practices that have sustained me this far:

  •  A commitment to daily Scripture reading — this has been a calming anchor to my days.  I listen to a daily ‘dose’ on a YouVersion Bible reading plan every morning as I move through my routine.  It’s a small thing that makes a huge difference.
  • Regular visits with my chiropractor and physical therapist who have been my coaches and supporters for going on three years now.  I can’t say enough good about these two.
  • Yoga, a healthful eating regimen, and walking.  Daily intentional care of my physical body helps maintain both my physical and emotional health.
  • Writing — putting my thinking on a page with a commitment to total transparency has been an accountability that contributes to my emotional and physical health.
  • Psychological therapy — a once a week discussion with a trained professional who helps me sort out the healthy and unhealthy messages I am giving myself.  I am always surprised by the interrelationship between physical and mental health; it cannot be overstated.
  • A renewed commitment to prayer — this seems to be the hardest for me.  I am so used to muscling through and finding my own solutions.  Turning to prayer is a highly intentional act right now.  I am praying that it becomes more automatic over time.

I sometimes joke that taking care of myself is a part-time job.  It takes a lot of effort.  However, I have learned that if I have any hope of caring for the people I love or for being effective with my students, I have got to oxygenate myself first.  It’s not selfish; it’s a healthy practice that enables me to do the things I love.  It honors the Creator to care for what He created.

Jeremiah 17:14

Heal me, Lord, and I will be healed; save me and I will be saved, for you are the one I praise.

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”

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.