Facing Change

I don’t want to brag or make it seem like I’m an expert on change, but here are the facts:

Before I graduated high school, I had lived in six homes (ok, I only remember four of them). During and after college, I lived in nine locations (counting separate dorms). Since we’ve been married, we’ve had eleven homes. You might call me a moving expert, because I was Marie Kondo-ing way before Marie Kondo was a thing.

I’ve gone to two elementary schools, one middle school, one high school, two colleges for undergrad (transferring after freshman year), and have taken graduate courses at three universities.

Not counting babysitting, I’ve held at least 25, yes twenty-five, jobs in my life, and I’m sure I’m overlooking some gig-work like that one summer that my stepfather got me an “opportunity” handing out samples in the deli of the grocery store that he managed.

I’ve walked into plenty of new situations, and I’ve learned a few things along the way.

First, I always come with the gusto: This is gonna be great! Imagine all the possibilities! Won’t it be fun? I am at that point a glass-hall-full-and-expecting-more kind of girl. I come on full speed and give it my all. (Exhibit A: I’ve already organized and alphabetized my newly-forming classroom library, and I’m not even in my classroom yet.)

Because I come in with so much enthusiasm, I have been known to overlook critical details, such as, I don’t know, the fact that the people in my life are also feeling the shift of change and they might not be as enthusiastic as I am. My daughter recently reminded me that when we uprooted our family and moved to St. Louis, my husband and I full of gusto and optimism, our children were reeling with grief, anger, and fear. They were not thrilled to be clinging tightly to the flying capes of their superhero parents. They just wanted us to stop and hold them, which I will graciously remind myself that we did from time to time, but we were, I’m afraid, quick to resume our flight — to conquer our mission and save the day.

Another thing I’ve noticed is that I quickly adapt to culture and expectations. In a new setting, I will likely watch quietly for a few days or weeks, until I see how “we do things around here,” but once I have the lay of the land, I bring myself to that situation in the truest way that I can. I remember the faculty retreat where I met my coworkers at Lutheran North. We were at a camp about an hour away from the school, all in shorts and tennis shoes. We gathered for the morning in a conference room to “talk business,” but after lunch we made our way to a challenge course complete with a zip line. Since it was my first day or two with this community, I was in that ‘quietly watching’ phase of entry, so when my team (people I’d never met before!) needed to lift me over a chest-high obstacle, I let them, and when they asked me if I would like to climb a rock wall and do the zip line, activities which I would under normal circumstances politely (or not so politely) decline, I said ok, I would do it. I was trying to go with the flow and figure out the culture, so I went out of my comfort zone and wouldn’t you know, I climbed that wall and zipped that line, and I felt great! These early successes, and others like them, gave me confidence to take some other chances with that group that would soon become family. I thrived at Lutheran North, where I became a leader, and my team embraced me in my truest form which is always honest (sometimes to a fault), often loud, and frequently emotional.

I came into my experience at Lindamood-Bell much more quietly. Illness had sucked the confidence out of me, and the intentionally positive and congratulatory environment of the company culture seemed, although very welcoming, quite foreign. The first two weeks I sat in a room with a coworker (who was my first on-the-job bonus kid) learning the programs, quietly taking notes, and reluctantly participating in role plays. The job was very scripted to start, and I was thankful! Because I was still visibly struggling with autoimmune disease, my gusto was suppressed; I was happy to have clear expectations and structure. I wouldn’t have to lead in this position, well, not at first…not until I was much stronger.

Yes, I come in with gusto, I quietly learn the culture, and then I am who I am.

At Lutheran North, my students called me Momma Ratch. Two of my own children were students at the school, and though while they were in my class, they were students first and treated as such, they were also my children, who rode in my vehicle, dropped by my classroom for a snack, needed to be driven home when they were ill or forgot their running shoes, and invited their classmates to our home. My students who were not my children, saw me in my role as teacher and my role as mother. They came to understand that I was imperfect in both roles, but that I continued to show up and try. They could come to my room with difficulty or to share celebration. They could borrow a few dollars or raid my stash of feminine supplies without asking. I had a stockpile of notebooks, folders, pens, and books in my room that I collected each year when students cleaned out their lockers. Anyone in the school knew they could come get what they needed no questions asked. I had firm and high academic and behavioral expectations, but I also learned what I could let go, what I could negotiate, and what really didn’t matter much at all.

At Lindamood-Bell, my coworkers called me Momma K. This probably started because I am the age of the mothers of all of my coworkers. They are almost all in their twenties (the age of my children), and though I didn’t always feel like it, particularly in the beginning, I think they have valued my experience, my perspective, my age. Often, it was me who was asking them for support, for encouragement, for understanding, as I navigated some of the most difficult years of my life. They were mostly oblivious to the grief that I was carrying, but it seeped out in moments of unprofessionalism. I would snap in a moment of frustration or glare at a coworker who told me something I didn’t want to hear. Yet, they, too, accepted me for who I am, and even celebrated me. In fact, the culture of Lindamood-Bell, the clapping, the parties, the dancing and balloons, reminded me of the importance of celebration, of noticing small victories and big ones even (and especially) in the midst of grief and transition. My coworkers dress up in wigs and hot dog costumes on a Wednesday just to make learning more fun. They hide pictures of Guy Fieri inside a closet to surprise you and make you laugh. They help kids set a trap of plastic spiders to scare you when you walk into a room. They cry because you are leaving, but send you off with books for your new classroom, a gluten-free cookie for the road, and a bottle of Malbec for your next celebration.

As I’m gathering my gusto to walk into Detroit Leadership Academy I want to be mindful of those around me who in the midst of Covid-19 and all its uncertainties might not be feeling as enthusiastic as I am; I want to be sure I stop and attend to the needs of others instead of just powering through. I know I’ll take the confidence and flexibility I found at Lutheran North and the kindness and celebration I learned at Lindamood-Bell. I’ll walk in quietly, even though I’ve already stocked my closet with teacher wear and powerful shoes. This is a brand new culture, and I want to see how “we do things around here” before I find the expression of myself that will work best for these kids, these coworkers, this school, this season.

As in every other change I’ve navigated over my fifty-plus years, I know I am going to learn at DLA — I don’t know what yet, but if the lessons I learn are even half as impactful as the lessons I’ve learned at Lutheran North and Lindamood-Bell, I know I’ll be changed forever.

Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.

Joshua 1:9

Note: If you are in or near Ann Arbor and have surplus school supplies: notebooks, pens, folders, index cards, feminine supplies, etc. I would be happy to take them off your hands and put them in my new classroom so that students can come and take what they need no questions asked.

But Wait, There’s More, Changing Course, pt. 2

I have a confession to make: I like to apply for jobs. That might be an understatement. Applying for jobs has become sort of a hobby for me. I scroll through postings on Indeed and search school, district, and university websites to see what’s available, then I “throw my hat in the ring.”

Quite often.

I’ve been doing this for years — maybe close to thirty years, on and off, even when I had my most satisfying job ever at Lutheran North in St. Louis. I would burn off a frustrating day or month by applying at a community college or a public school. Typically nothing comes of all this applying, but once, about a year before I left Lutheran North, when I was quite sick with my first extended autoimmune flare, I applied for a job because I thought a different teaching position at a new school, in the city, closer to home, would lighten my load and be more doable in my weakened state. (I obviously was not thinking very clearly at the time.) I went through the interview process and received an offer but came to my senses and turned it down.

Shortly after that decision, my husband got an offer to take the position he has now, which afforded me an opportunity to take an extended break and begin healing.

When I was taking that break, I took applying for jobs to a whole new level. I did force myself to not apply for anything for the first four months, but then I started applying with abandon.

At first I applied for only part-time or gig work because that is what I felt up to. I applied to shelve books at libraries — can you imagine the bliss for an English teacher? I applied to fold towels at a gym — free membership included! I applied to proofread textbooks — I mean, come on — who’s got a better skill set?

While I cast a wide net, I found myself landing in jobs that have uniquely prepared me for what’s next.

I began by proofreading and tutoring which was like taking a course in grammar and MLA/APA style. I bent over ACT and SAT tests for hours with students, showing them patterns and strategies. I was constantly checking rules and then explaining those rules to students. I read and re-read college essays and coached students through AP literature and composition courses.

Then I worked a summer at Lindamood-Bell which gave me a framework and language for verbalizing my mental movie and teaching kids to do the same. It also helped me understand the nature of reading as two processes and how to spot which area was more difficult for a student.

I moved from there to the college classroom which not only let me apply some of my Lindamood-Bell language and skill to literature and composition courses, it also gave me a more realistic picture of university instruction, particularly through the lens of an adjunct instructor. I’d been romanticizing that role for a while, and I needed the reality check.

I worked two summers at the University of Michigan teaching students of means from all over the world how to write college essays. This experience reminded me that kids are kids are kids — whether they are from Manhattan or Turkey or Detroit. However, it also irked me — why should these kids get intense high-quality instruction in the summer when the ones who really need it don’t have access? Why should those who could easily pay for their college education get an extra leg up when it comes to admissions?

The next three summers I flew, along with thousands of other teachers, to score the AP Literature and Composition exam. I read over a thousand essays in the space of a week, each year, and the evidence of disparity in the United States educational system was palpable. Some students had been so well prepared — their analysis was mature and concise, their evidence vivid, their sentence construction well-developed. Other students wrote letters to whoever who end up reading their exams, “I don’t know what I’m doing. My teacher didn’t prepare me for this. We only read one book all semester.” I was reminded that while students who had excellent experiences in elementary and high school would inevitably go on to excellent college experiences, those from ill-equipped districts would not. Not without some kind of miracle.

I worked for another two and a half years at Lindamood-Bell. I went back when I realized that the adjunct instructor life wasn’t for me. Yes, it got me in the classroom, but unlike teaching in a high school, it didn’t allow me to form the kind of long-term relationships with my students that foster trust, growth, and transformation. Besides, it was a lot of work, and I felt isolated from other instructors who were all staying in their lanes, prepping their courses, grading their papers.

Lindamood-Bell was, once again, an excellent experience. This time around I was developed from an instructor into a leader. I took on more and more responsibility, had a caseload of students, and began mentoring other instructors. I was beginning to remember my skill sets — my ability to build strong rapport with students and families, my capacity to shift instructional gears in the moment based on student needs, and my deep empathy for students who struggle. Yet, it continued to eat at me that the students who were receiving this instruction — targeted one-on-one reading interventions — were mostly students of means whose parents could afford the high price tag of such instruction. What about all the kids whose parents could not? Who was helping them?

A couple of years ago, I was up late at night thinking such thoughts along with I just really miss the classroom! and I applied for a high school English position in Detroit. When I got an email asking me for an interview, I was ecstatic, so when I saw my husband at the end of the day, I blurted out, “I got an interview at a school in Detroit!” He looked at me dumbfounded and said, “What?” which is when it dawned on me that I hadn’t brought him along on the journey. He knew, everyone close to me knew, how I felt about inequity in education, but he didn’t know I had applied or that I was even considering the possibility of going back to the classroom. The days when I was so terribly ill were clear in his mind — he’d seen me lying on the floor writhing in pain, he’d watched all the experiments with treatments and medications, he didn’t want to see me go back there. How, he wondered, did I imagine that I could drive to Detroit every morning, teach a whole day, and then drive back home? Why did I think I wouldn’t end up right back in bed? Didn’t I remember the stacks of paper? the long days? the time on my feet?

Oh, yeah, I thought. He’s right. I probably can’t do that. What was I thinking?

But time passed. I continued to heal. I found myself working 40 hours a week at Lindamood-Bell, and though I got tired, I could feel my health beginning to stabilize, my stamina starting to build.

And then Covid happened.

And then George Floyd was killed by police. Ahmaud Arbery was murdered for running and being black. And Breonna Taylor died in her own home in her own bed. And people across the country walked out of their quarantine homes and said, “Enough is Enough.”

I looked at my husband and said, “I want to be part of this. I belong in the classroom. I belong with kids who have been told they don’t matter. I’m ready. I’m strong. I want to try.”

And he said, “You’re right. Let’s do it. Toss your name in the hat. Let’s see what happens.”

So, I tossed my name in some hats, and I can’t wait to tell you what happened.

The heart of man plans his way, but the Lord establishes his steps.

Proverbs 16:9

Coronavirus Diary #9: Comorbidities –Pandemic and Racism

Often illness is complicated: a person doesn’t typically just have heart disease; he likely has comorbidities, or other diseases such as diabetes and high blood pressure that are present at the same time. Depression often coexists with anxiety; skin rashes often accompany allergies. When someone gets sick, the doctors often first deal with the ‘presenting problem’ or the one that is currently causing the most difficulty. However, in the course of treatment, other underlying issues are often discovered.

Several years ago, I went to the doctor with a presenting problem — actually a few presenting problems — joint pain, fatigue, and inflamed patches of skin. The doctors diagnosed psoriatic arthritis, and I began treatment. In the wake of that diagnosis, other issues surfaced — iritis, scleritis, sacroiliac joint dysfunction, a tendency toward overwork, a highly critical spirit, and deep, soul-wrenching, unexpressed grief.

Several weeks ago, we were all sent home because our nation had a presenting problem — a coronavirus pandemic. Now that over 1.7 million of us have been diagnosed with this illness and over 100,000 have died, some comorbidities are starting to surface — broad weaknesses in structures like education, health care, and criminal justice; a struggling economy; and, most notably right now, flaring systemic racism.

We were wearing our masks, staying at home, washing our hands, and applauding our essential workers when we started hearing about the disproportionate impact of this virus on people of color (nearly two times as many as would be expected based on population). And then another series of senseless deaths hit the headlines:

Ahmaud Arbury was shot to death while he was out for a run on February 23.

Breonna Taylor on March 13 was killed by police who shot her eight times in the middle of the night in her own home.

George Floyd died with a police officer’s foot on his neck, begging for air, on May 25.

It wasn’t enough that communities of color were losing fathers, mothers, brothers, and sisters every day to Covid — now they (and we) have over and over watched video clips of two of their own (Arbury and Floyd) actually being killed.

Citizens across the country — black, white, Hispanic, male, female, gay, straight — are outraged and are taking to the streets demanding attention for this sickness — this disease — this epidemic.

It’s not new. Racism is part of the very fabric of our country — its threads are dyed with the blood of Native Americans and African slaves who paid the price for straight white males to expand their territory, build their monuments, and amass their riches. For centuries, non-whites have provided manpower in exchange for lower pay, fewer opportunities, and a gaze of suspicion. For centuries, the lives of brown and black people have been deemed expendable — by slave owners, by riot police, by the judicial system, by the educational system, by you, and by me.

We have never had this disease under control, but now that we are weakened by our presenting problem — Covid 19 — and starting to feel the added pressure from the resulting financial crisis, the underlying sickness is starting to flare. In a matter of just a week or two, its strength seems to have dwarfed that of a global pandemic — a pandemic that sent all of us racing to our homes, dragging out our sewing machines to create masks, and washing our produce and surfaces like our lives depended on it.

While just a few weeks ago, most of us were reluctant to leave our homes for fear of catching a life-threatening virus, thousands are taking to the streets to fight a bigger demon — one that questions our humanity.

If we can watch a man die on national television and not be moved to action, who have we become?

If we can stand by while a woman is shot inside her own home — a woman who had not committed a crime or posed a threat to anyone — what else will we tolerate?

If we are not sickened by two white men gunning down an unarmed human in broad daylight, what is the matter with us?

If I’ve learned anything about healing sickness, it’s this — to have any hope of recovery at all, you’ve got to be willing to look the disease straight in the face and see it for all it is, and then you have to be willing to make drastic intentional change.

To recover from what on the surface appeared to be psoriatic arthritis, I had to slowly and carefully examine each underlying issue and then I had to make significant changes to my home, my job, my diet, my exercise, my ways of dealing with emotion, and my attention to self-care. Even then change did not happen overnight. Slowly, over the course of more than seven years so far, I have experienced improved health.

For our nation to have any hope of recovering from a centuries-long battle with racism, we’re going to have to start with taking a long hard look at how deeply this disease has permeated the cells and tissues of our society — and I think we are starting to. We are scratching the surface. We are starting to see the disparities in pay, in health care, in education, in the judicial system, and, you know, I think Covid-19 paved the way for that. When the numbers started showing how hard communities of color were being hit, brave leaders started to talk about why. And now that we are seeing these blatant horrific examples of outright racial hostility, thousands are taking to the streets, demanding that the rest of us take that long hard look, that we see the pus-infected wounds, and that we make sweeping intentional changes — to tear down oppressive policies and practices, to promote reparative measures, to provide spaces in which people can air their grievances and be heard, and to create new systems that provide access for all people regardless of color, or gender, or income, or background.

Sweeping systemic change and recovery won’t happen immediately, but if we are willing to commit to working together to make space for the stories of individuals who have been harmed by broad systemic racism, to interrogate our own conscious and unconscious biases, and to insist on structural changes; if we will commit to stay the course day in and day out, having hard conversations and working through difficulty; slowly, over time, we will begin to see life return to our bodies and restoration spring up in our communities.

When all of us — all of us — are breathing freely, walking safely, and sleeping peacefully, we will enjoy a new kind of freedom, a new way of living, a rich expression of humanity.

I beg you to join me in joining those who have been doing this hard and essential work.

I’ll start by posting some resources. Will you start by checking them out?

75 Things White People Can Do for Racial Justice

26 Ways to Be in the Struggle Beyond the Streets

The Next Question with Austin Channing Brown

We Live Here

Code Switch

Black Lives Matter

If you have other resources you would like me to add to this list, please share them in the comments below.

He has shown you, O mortal, what is good. And what does the Lord require of you? To act justly and to love mercy and to walk humbly with your God.

Micah 6:8

I look just fine

Click the arrow to hear me read this post, or simply ignore and read on.

Friday afternoon, I sat at my desk grading some student work. I had untied the blanket scarf that I’d had wrapped around my neck and transitioned it from scarf to blanket so that I could wrap up as I worked. I was tired. And chilly.

Then, when my supervisor entered my office and shared some sadness with my coworker and I, I moved the blanket from my shoulders to up around my head, like a babuska. I huddled inside, rounded my shoulders, and audibly sighed.

Any stamina I had left after two forty-hour weeks was quickly dissipating. I didn’t have the bandwidth to take in sadness. I only had enough left to finish my tasks for the week so that I could stumble home.

Nevertheless, my coworkers and I paused for a minute and were sad together.

When the day was finally ended — most of the t’s crossed and most of the i’s dotted (I couldn’t be bothered to ensure all) — I tied the scarf around my neck, put on my coat, grabbed my backpack, and started the journey home.

I knew, as I walked out of the building, that I would spend most of the weekend in recovery, most of the next three days resting, hydrating, and giving my body time to heal.

I’m not sick. I am not injured. I have an autoimmune disease. And when your spoons are gone, they are gone, baby. After a couple long weeks — even a couple long hours — you can find yourself sitting at your desk wrapped up in a blanket, practically sucking your thumb.

I look just fine. You wouldn’t know that most of the past month I’ve been caring for a persistent case of iritis, which has involved — so far — two trips to the ophthalmologist and a course of steroid drops, OTC ibuprofen, and plenty of rest. You wouldn’t be able to see that for most of the week I’ve been trying to convince myself that I don’t have a urinary tract infection (sorry for the TMI) and that at this very moment, I’m contemplating a trip to the doctor to pee in a cup and find out if it is an infection or just inflammation.

I look just fine. In fact, I want to look just fine. I try very hard to look just fine.

Before I even walk out the door each morning, I do two HOURS of self care so that I can have the stamina to live my life — complete my job requirements, maintain my emotional health, and prevent myself from an autoimmune flare.

The alarm goes off at 5:30. I go to the bathroom and give the doggy the same opportunity. Then, I head to my home office, sit on the futon, read some Scripture, and write my three morning pages. Next I do yoga. (I am currently following a 30-day plan called “Home” by Yoga with Adriene.) By the time I’ve done all this, I am usually rushing to grab the clothes I’ve lain out the night before on my way to the shower. I wash with delicate soap and shampoo that won’t incite psoriasis, and I take time to apply carefully-selected moisturizers and cosmetics that do NOT annoy my skin. I dress in clothing that is comfortable and shoes that won’t irritate my feet. Finally, I make gluten-free oatmeal (yes, that’s a thing) and a cup of green tea, both of which I carry out the door with me so that I can make it to work by 8. I cherish this luxury of time to connect with God, connect with my mind, connect with my body, and prepare myself for the day.

In addition to my daily work, I also have other regular maintenance routines that I follow. I go to regular physical and dental check-ups like anyone else, but I do much more. Weekly, I see at least one member of my team — my chiropractor, my physical therapist, or my functional medicine practitioner. Once a month, I see a therapist, and twice a year I get an injection from a pain management specialist.

I love this routine. And, I have noticed, after having developed it over the past few years, that it makes me feel and look just fine — most of the time.

Even all this preventative practice can’t consistently keep autoimmune flares at bay.

It does a pretty good job, I must say. When I first started struggling with autoimmunity, I felt (and, quite frankly, looked) lousy most days. My eyes hurt, my skin was inflamed, my joints were stiff and sore, and I had zero stamina. I could barely keep my eyes open on my drive home after a typical day. I was convinced I’d landed in a new reality. I would never be able to hold a full-time job again. I would always be in pain. I would always feel (and look) miserable.

That was seven years ago this month.

Fortunately, the past seven years have led me to this place — a place that is full of hope. I have found a different way to have a career — where forty hour weeks are the exception not the rule, where I can occasionally sit at my desk wrapped in a blanket on a Friday afternoon, and where I can spend my weekend recovering instead of worrying about 75 AP essays that need to be scored and returned.

It would probably be a healthier rhythm even without autoimmune disease, but my dream was to teach in a high school or college where current systems don’t typically allow teachers to have a reasonable amount of work. High school and college English teachers work much more than 40 hours a week and have very little, if any, time for self-care or recovery — especially not teachers who have high expectations of themselves and their students and who are soldiering through their own personal crises.

Ironically, I was living my dream of speaking into the writing of people who were finding their way, when I realized I had lost my own way.

Autoimmunity has given me back my life — a better life than I could have imagined, even considering the frequent eye issues and other systemic flares. Because of the routines I have had to employ in order to function, I am much more aware of who I am and what my priorities are.

Because of autoimmunity, I look — and actually am — just fine.

I have spent most of the weekend recovering. I’ve stayed mostly in pajamas, wrapped in an afghan, eating foods that don’t contribute to inflammation, and using all the practices that restore me — Scripture, writing, yoga, crocheting, college basketball, and movies. I’m feeling a bit better. I may head to the doctor yet, but for right now, I’m going to crawl over to the couch, turn on a good flick, and continue to rest.

I’m sure I’ll look just fine in the morning.

My son, pay attention to what I say;

    turn your ear to my words…

 …for they are life to those who find them

    and health to one’s whole body.

Proverbs 4:20 and 22

Off the couch, at the table

Trying something new. Click above to listen to me read this post.

I recently wrote a post, On and Off the Couch, which was both an acknowledgement that I had been grieving some substantial losses for quite some time and an announcement that I was ready to move away from that period. A recent experience helped me take the first steps.

While I was still sitting on my dilapidated pleather couch, the University of Michigan reached out to me — would I be willing to participate in a study the Nursing School was conducting? The participation requirements were that you a) be over 50, b) have a chronic illness, and c) have a wifi connection. The study would take 6-8 weeks, and upon completion, I would receive a $150 gift card.

Well, why not? Since I’ve lived in this little house by the river, I have been open to experimentation. In fact, I once even called myself a lab rat! What did I have to lose? The goal of the study is to determine if ongoing nursing care can impact the lives of those with chronic illness. Let’s find out.

Going into the study, I was picturing that a nurse would come to my house, clipboard in hand, checking boxes to make sure that my home environment was safe. I was guessing that she would give me some tasks to do. I knew that I would be expected to make a voice recording every day and to meet with my nurse via video conference once a week.

I was not anticipating being nudged off the couch and supported into a new rhythm of life. I did not see that coming.

Yes, I was ready. The couch was sodden from all the tears I had shed on it and was practically disintegrating under me. I could see that I was going to have to stand up soon, but I gotta tell you, I was still pretty comfortable, so I was lingering for as long as possible.

Then in walked this nurse, who sat across the table from me, asking me some non-threatening questions and inviting me to set some goals. What types of change was I interested in making, she asked.

I told her all the changes I had already made — practicing yoga, avoiding gluten and dairy (and now corn), and writing every day. I said, “If there is any stone that has yet to be turned over, it is probably addressing my weight. Since chronic illness benched me from running in 2013, I have gradually put on about 10 pounds.”

I wouldn’t say I am overweight, but I am not overly thrilled with the way I look, even if by lifestyle I have diminished most of the symptoms of my illness and I feel the best I’ve felt in years. I keep trying to decide if I should just be content and accept this as how I look as a 50-something woman, or if I should try to make a change.

I don’t overeat. I do yoga usually five or more days a week, and I often go for a 20-30 minute walk sometime during the day. What more could I do to drop some of this weight?

“Maybe,” I suggested to the nurse, “my husband and I need to stop eating our dinner on the couch in front of the TV. Maybe we should go back to eating dinner at the table.”

I cringed as I said it. I didn’t want to make this commitment. We had established quite a rhythm during the Season of the Couch. Come home, utter a few words to one another, fill our plates, and plunk down in front a string of meaningless shows. It was quite comfortable. We were together, after all, and we didn’t need to say a lot. Couldn’t we just continue coexisting in our misery?

But I knew, I knew, it was a change that needed to happen.

We were the ones who, when our children were small, ate all our meals at the table. We all ate a big breakfast together before the kids left for school and he left for work. Those who were home with me ate lunch at the table. At dinner, we all gathered for a sit down meal — no matter how fatigued we were, how distressing the conversations got, or how many glasses of milk were spilled (typically three). Although it was sometimes stressful, we valued the face time this gave us as a family.

Even when the kids were teens, we still made an effort to eat breakfast in close proximity to one another (maybe standing with a bagel or a bowl of cereal in hand) and come together for dinner. I’d be lying if I said that every meal was blissful and meaningful — they were not. However, this rhythm allowed a check-in, a reading of the temperature of the room, a moment to gauge the health of the family and the individuals in it. It was sometimes difficult to look all that hurt straight on, but we continued.

I think when we moved — just the two of us — to this little house by the river, we started out at the table. It was natural. He was working all day, and I was taking some time off. Making dinner and setting the table gave me a project in the afternoon. We would sit across from one another, sharing a re-telling of the day, making plans for the upcoming weekend, or discussing a planned purchase or a current event.

But when our bottom fell out and we found ourselves scrambling for something to hold onto, we landed on the sectional in the living room, plates in hands, eating quietly, and watching Jeopardy or Law and Order. It was a comfort to be together, not talking, just existing in our grief.

So we stayed there.

Until I uttered those words, “maybe we need to stop eating our dinner on the couch in front of the TV.”

When I said them, the nurse asked me, “Will your husband be open to that?”

“Well,” I said, “I think he’ll initially grumble a little, but I think he knows we need this change, too. I think he’ll be on board,”

And he was. When I told him my goals, he gave a sigh, then said, “Yeah, I’m in.”

We started that evening. I made dinner, we filled our plates, and instead of walking toward the couch, we sat at the table, across from each other, and practiced having conversation over dinner.

“What was your day like?”

“Have you spoken to any of the kids today?”

“How are your parents doing?”

It was a little awkward at first, using those conventions that we hadn’t used in quite a while, but over time, we remembered how to have a conversation over dinner. We found the rhythm of clearing our plates and putting away leftovers together. We discovered that we can watch a television show or two in the evening rather than scrolling through several.

It might not seem like a big deal, but it was one of the first steps in getting us off the couch and out of the season of grieving.

I met my nurse, Karen, about six weeks ago. My husband and I have carried our plates to the living room three times since then. All of the other nights we’ve eaten together at a table, either at home together or out with friends or family.

We’re talking to each other; we’re laughing. It sometimes feels like we’re celebrating.

And, in a sense we are. Our reason for grieving hasn’t changed, but we have reason to hope that God is in the process of making all things new.

I haven’t lost any weight — not the kind that can be weighed on the scale. Instead, I’ve found some joy that I was beginning to think I wouldn’t feel again.

It seems to me that ongoing nursing care can make a difference in the lives of people with chronic illness (and chronic grief). I’m thankful to Karen and the University of Michigan Nursing School for giving me the opportunity to participate in this study.

I’m not sure this is the kind of change they were hoping to make, but it was the kind of change that we needed.

I will turn their mourning into joy;

    I will comfort them, and give them gladness for sorrow.”

Jeremiah 31:13

A Return to Best Practices

Early in this blog, much of my content was about my ongoing journey through chronic illness — pain, fatigue, and issues with my eyes and skin. I don’t write about it much any more, because most of my symptoms have leveled out; I don’t often have a crisis. Sure, pain is still present every day; yes, my eyes can give me challenges from time to time; and, of course, my skin continues to be my first alert system. However, for the most part, I have found a new rhythm that sustains my health and has even allowed me to work full-time and enjoy life outside of work. (Read my latest health update from March here.)

In fact, I’ve been in this rhythm so long, that I can forget how miserable I was just a few years ago — when I had to limit myself to 1-2 activities a day, when I frequently found myself doubled over in pain or lying on the bathroom floor waiting to throw up, when I had to lie down for a while in the morning and in the afternoon due to extreme fatigue. Yeah, it was really that bad, so now when I work 40 hour weeks for months in a row, occasionally meet friends for dinner after work, or travel two weekends in a row, and suffer no consequences, I can get a little amnesia — the kind of amnesia that leads me to push the limits.

For the past month, I have been pushing the limits. We have had out of town visitors at least four times and have attended two family reunions, one wedding, one dance lesson, and at least two dinner dates with friends. No problem. I was feeling fine. Yes, I had to go to bed early a couple times, but I recovered quickly. I was able to keep writing most mornings, do yoga, go for walks, and still manage my regular household tasks like groceries, laundry, and cooking. I didn’t miss work or cancel any plans.

But this past week, I kicked it up a notch — I threw all caution to the wind.

After church last Sunday, my husband and I shopped for a few hours while we waited for new tires to be installed on our car. Monday, we met after work to grab a quick bite before cheering on our son in a local 5k; we even hung out with him for a while afterward. Tuesday, I attended my end-of-summer staff party complete with Chipotle and trivia. Wednesday, I met an old friend from high school for a quick reunion. Thursday, I ate out, played, and laughed with my son and godson. What a fun week!

And it might have been ok, if I hadn’t missed my last PT appointment or skipped my chiropractor for three weeks running, if I hadn’t been up later than usual every single night, if I hadn’t omitted yoga four days in a row, if I hadn’t had the corn chips with my Chipotle, if I hadn’t had two slices of pizza (all that gluten and dairy) at work on Wednesday, or if I hadn’t said, “sure Ethiopian food will be fine.”

People often ask me, “What do you notice when you avoid gluten and dairy?” or “Does yoga really help you?” or “Really, a chiropractor makes a big difference?” or “That PT sounds weird, are you sure it works?”

I typically say something like, “I’m not sure what does what, but I know that when I do all the things, I feel good enough to live my life. When I don’t do the things, I’m on the couch or in the bed.”

After a month of rich living, I abandoned my good practices for a week, and when I woke up Friday morning, I felt rough — my head hurt, my eyes were begging to be closed, I was nauseous, and I really thought I wouldn’t make it through my work day. I allowed myself an extra 30 minutes in bed, then begged the hot shower for transformation.

I dragged myself to work, mentally marking the four-hour countdown to lunch hour when I would finally see the chiropractor. It was a particularly challenging morning at work — complete with schedule changes, atypical student behavior, and two parent meetings –but I did my best and made it to lunch time.

I willed myself to drive to the chiropractor, rubbing my aching neck and fight back nausea. I was miserable. “Please, Jesus, let this adjustment at least alleviate this headache.” The chiropractor may have said, “wow” a couple of times as he moved up and down my spine putting each piece back in its assigned location, and he may have said, “well, that should make a difference” as we heard the pop of my sacroiliac joint jumping back into place. I can’t remember exactly what happened, because he then applied acupressure to two spots right below my eyes and then two spots on my forehead and the pain of my headache was instantly cut in half. I was astounded and relieved.

I walked to my car promising the doctor (and myself) that I’d return on my regular schedule. I drove back to work, where my office manager met me with a Whole Foods delivery — warm goodness without gluten or dairy or corn. I sat at my laptop with an ice cold Coke and my roasted chicken and vegetables and began to feel well again.

It was a quick turnaround — unlike the systemic flares from just a few years ago that would take 24 to 48 hours, this one lasted only about six hours. Just long enough to scare me straight.

All during those six hours I was picturing the tile of the bathroom floor and imagining myself packed in ice on the couch. I had forgotten those realities, but they showed up to remind me to return to my best practices.

I made a home-cooked meal on Friday night — roasted pork cutlets with rice and sautéed fresh vegetables and then slept for nine hours. I started Saturday with writing, yoga, and oatmeal before heading to a 90-minute structural medicine appointment where the practitioner moved all the muscles and ligaments to support the chiropractor’s work. I spent the afternoon doing food prep — making Kristin-friendly muffins and cutting up veggies and melon– and organizing my office. I finished the evening with three episodes of Queer Eye because it’s wholesome and friendly and hopeful.

I’m writing this on Sunday morning, and I’ve already journaled, done yoga, and am writing now to remember — that the full life that I enjoy is a gift. In a little while, I will head to church where I will give thanks for this gift– this physical restoration that is a mere shadow of the more complete restoration that has been happening inside. I will give thanks for both, and I will continue to return to all of my best practices.

Addendum: It’s now Monday morning. Yesterday on our drive to church, my husband and I started filling our day with visits and errands, and chores. We had quite a list, so we both agreed to “see how it goes.” By the end of church and a congregational meeting, I had decided I needed to see a doctor; I had symptoms that suggested an infection. So, we drove to our practice’s walk-in clinic to have me checked out. No infection, just more evidence of inflammation–I needed more than twenty-four hours to recover, apparently.

So, we scrapped our plans, came home to nutritious leftovers, an hour at the puzzle, a nap, and two episodes of The Great British Baking Show — yes, we’ve pulled out all the stops! In a little while, I will start my week with a trip to the physical therapist for the final “laying on of hands” in this series.

I am so thankful for my current health and this journey I’ve been on — a journey that tangibly shows me the value of self-care, a journey that allows me to do my best and gives me grace to recover when I’ve gone off the rails, a journey that reminds me to return to my best practices.

For from his fullness we have all received, grace upon grace.

John 1:6

Becoming Well(-er), a re-visit

Click the arrow to listen, or read on!

Last week, I shared two posts: the first, here, described autoimmune disease as I experience it now. The second, here, described autoimmune disease as I experienced it in the beginning. This post, another re-visit, was written in March 2019. It describes how I’ve come to view my journey with autoimmune disease. While at first I was overwhelmed, angry, and defeated by my symptoms, I now can see how learning to manage them and writing about the experience has opened a path to a new way of life. **This is not a how-to manual for those who are suffering; it is merely a narration of life in this chapter.

Five years ago, I was getting ready to transition away from a job I loved and a beautiful home in a community that had forever re-shaped us. One of several reasons for our move was my health. I had been diagnosed with psoriatic arthritis after a series of symptoms — extreme fatigue, skin outbreaks, and joint pain — had led me to a rheumatologist. I was depleted. I could no longer sustain the demands of my position, maintain our home, or do any level of caring for our family. Something had to change.

I began this blog in the midst of that transition because I needed a space to process all that was happening. Our oldest son and his wife were expecting our first grandchild. Our oldest daughter was graduating from college and moving across the country. Our younger son was in the military, and our youngest daughter was heading off to college. My husband was in a new position, and I was just going to focus on getting well for a while. While everyone else was moving, I was going to be still. (You can find the very first post from this blog here.)

A lot has changed since that first blog post. My husband and I were talking yesterday and it became clear that I don’t always articulate the changes that have happened inside of me — partly because they have happened slowly over the last five years and partly because I talked and wrote about my physical health so much in the first few years of my blog that I’m kind of over it. Certainly every one is sick and tired of hearing about me being sick and tired!

But here’s the thing, I’m not as sick and tired as I was five years ago. So perhaps it’s time to explore that reality. Maybe putting words to the ways that God has provided for my recovery will be an encouragement to me and to you. Shall we see?

First of all, I no longer have the psoriatic arthritis diagnosis. Bam! It’s gone. When the doctor told me that I did not have psoriatic arthritis, I felt angry. Certainly I still had pain, and psoriasis, and fatigue, and the HLA-B27 genetic marker often associated with certain autoimmune diseases. I had also had two rounds of scleritis, an autoimmune affliction of the eye. I thought the doctors’ removal of my diagnosis was a denial of my symptoms. However, over time, I have come to feel emancipated. I don’t have psoriatic arthritis, so, in some ways, my symptoms feel less permanent, less limiting; I feel hopeful for improvement.

Second of all, I am no longer taking medications to treat pain or inflammation. In fact, other than a daily pill to inhibit the growth of herpes in my eyes (a result of some of the psoriatic arthritis treatments), I take only supplements — Vitamins B, C, and D, fish oil, and magnesium. Occasionally, I take ibuprofen if I’m having a particularly difficult day, but mostly I am able to manage pain with movement, ice, epsom salt baths, and (a surprise to me!) peppermint essential oil. This is also quite liberating. In addition to the side effects from taking daily medication, I also experienced the feeling that I was some kind of invalid, particularly when I was injecting myself when Enbrel or Humira or Cosentyx. And since none of these drugs really benefitted my physical symptoms, I was actually getting an overall negative impact. Eliminating each of them, over time and with doctors’ supervision, was further removal of that permanent diagnosis.

Next, I have been blessed by a fabulous team. I first wrote about them here. I have found that the best way to improve my health is to regularly attend to it, so I see a specialized physical therapist twice a month, a chiropractor once or twice a month, and I recently added monthly visits to a structural medicine practitioner who specializes in Hellerwork. This regimen, along with my daily practice of yoga have worked together to strengthen, care for, and realign my body in ways that decrease my pain and increase my ability to participate in my daily life. I feel stronger, more flexible, and more capable. Imagine my joy last summer when I was able to have a daily plank challenge with my students — me, the oldest member of our staff, on the floor in full plank with a room full of elementary school boys.

Do you hear it? The sound of healing and hope? I do! That alone is worth writing about. The mental shift from “I have a chronic illness,” to “I am getting stronger,” can not be overstated. I have written often about how this “illness” has actually been a blessing for me. It gave me a reason to slow down, take stock, and re-configure my life in a way that supports physical, emotional, and spiritual health. And that process — that slowing, that experimenting, that shifting — has allowed for miraculous transformation in my thinking.

Do I still have pain? Yes. I have persistent pain, predominantly in my right sacroiliac joint and low back; the intensity of this pain varies depending on activity — how much I sit, stand, move, stretch — and how often I receive proactive treatment. (In addition to the work my team and I do, I occasionally get a steroid injection in that joint to reduce inflammation.) Do I still have fatigue? Yup. However, I’ve been amazed that since last summer I have been working 35-40 hours every week. Although this is do-able, it does limit my ability to interact with friends and family. (I need to sleep anywhere from 8 hours on a typical night to 12 hours when I’m really wiped out.) Optimally, I would like to work 30-35 hour weeks so that I can still have the energy to go for a walk and have dinner with my husband, develop friendships, and visit family. Do I still have psoriasis? Very limited. I call my psoriasis my “barometer”. If I am doing too much, the palm of my right hand becomes inflamed — that’s my first signal that I need to slow down and attend to self-care. If I ignore it, I get more outbreaks, but even then, they are much easier to manage than they were five years ago. Do I still have issues with my eyes? Yes. Like my psoriasis, my left eye will become inflamed if I am overdoing it. I have learned to take that signal and slow down to provide extra care. In this way, I have avoided major issues.

Do you see it? Do you see how God has used these signals to transform my life?

Probably more than any other topic in this blog, I have written about my soldiering ways. I was really good for a really long time at doing whatever needed to be done. I was constantly in motion — driving, teaching, cleaning, shopping, directing, running. I thought I was getting it right, but I was getting it all wrong. I was missing all the critical moments — the seeing, the listening, the caring, the holding. So rather than letting me continue in that fashion, God slowed me down. First, He sat me flat on my butt and got my attention. He has since taught me a new way of life. And, because He knows that I am bent on going right back to my old ways, He allows a few signals to remain — to remind me, “Hey, Kristin, you’re doing it again.”

That’s how much He loves me, guys. He created a plan just for me to specifically address my particular learning needs.

I remember the flood of emotion back when I got my initial diagnosis — anger, sadness, helplessness. Now? I am so thankful for this journey. I am forever changed by my experience. I would no longer say that I am ‘sick’, but that I am becoming more well every day.

I know that my story is not the same as everyone’s story. Some people experience chronic illness very differently than I do; some people suffer terribly.

If that’s you, if you are suffering right now, I pray that you, too, may experience whatever kind of healing you most need. May you be aware of God demonstrating his deep love uniquely for you.

Your journey may not look like mine, but I am confident of this: you are being carried in the palm of His hand.

God demonstrates his own love for us in this: While we were still sinners, Christ died for us.

Romans 5:8

Body Signals, a Re-visit

I wrote this post almost exactly one year ago today — during another season of busy-ness. As I re-visit this post, I am thankful to acknowledge that I have turned down my work intensity just a bit. I haven’t stopped deeply caring for my students, but I am finding ways to care for myself, too, as I do my best for them.

The physical body is uniquely designed to send us messages that help us take care of ourselves. For example, I have a ten year old student who has beautiful long eye lashes. These eye lashes serve to keep dirt out of his eyes, but occasionally one, rather than staying where it belongs, pokes in and causes irritation. His eye begins to water, and my student does everything he can to get that lash out of his eye. Feeling the irritant, the eye signals my student to make eye lash removal a priority.

Similarly, our bodies signal fatigue at the end of a long day, prompting us to go home and get some rest. They signal hunger so that we will be sure to eat foods that fuel our many activities. They tell us when we are cold so that we’ll put on more clothes, and they signal pain when we have an injury.

Most of us respond to these signals. We get sleep when we are tired. We eat when we are hungry. We wear warmer clothes in the winter and tend to injuries when they occur. However, the human body is also able to ignore these signals for short periods of time in order to meet immediate demands, respond to crisis, or push through difficult periods. Soldiers and rescue workers have demonstrated this ability to be highly effective for long periods of time without rest or proper nourishment. However, all of us, after a period of ignoring the body’s signals, must take time to recover, to heal, to restore. If we continue in a chronic state of over-doing, the body has to develop some next-level signals — it begins to demand attention.

Several years ago, my body did just that. After years of trying to power through responsibilities without responding to my body’s physical, spiritual, and emotional signals, I began to develop symptoms: skin rashes, joint pain, extreme fatigue, and eye inflammation. At first, these symptoms side-lined me. They were so insistent that I had to take several months of intentional care and then several years of refined practice to move back into the game. These next-level signals forced me to care for my body after a long period of neglect.

Now that I’m off the bench, I’ve learned that these chronic issues can be kept at bay if I work a moderate number of hours, practice yoga, avoid triggering foods, and get plenty of rest — if I make it a habit to listen to my body’s signals. However, if I fall back into old patterns — working too many hours, ignoring my self-care practices, or eating carelessly — my eye begins to hurt, my skin rashes flare, and occasionally I get knocked down. I find myself on the couch with ice packs and fluids, tending to my body after a period of neglect.

For the past month or so, my sessions with one particular online student have been fraught with technical issues. We lose our internet connection, my screen freezes or her screen freezes, or we experience an irritating lag that makes our communication difficult. When I opened her virtual room last week, it was evident almost immediately that we were going to struggle, so I called our IT department. They started trouble-shooting the session, and it became apparent that other instructors’ sessions were suffering, too. Finally, after many attempted fixes and much frustration, IT recommended that each of us clear the cache on our web browsers. None of us had done that in quite a while, and our chrome books were bogged down. They couldn’t continue to function until we gave them some of the maintenance that they needed. It didn’t take long, just a couple clicks, and the efficiency of our internet was restored.

It seems that our habits of hurriedly moving from student to student had prevented many of us from completely powering down our computers, from doing regular computer maintenance, from clearing our cache. Neglected, our computers stopped working.

Similarly, I’ve been pushing my body lately. We’ve been short on staff since the beginning of the year, and all of us have been working long shifts and managing extra responsibilities. It’s hard on all of us. And while I am making sure that I write and do some yoga every day, I’m not taking time to clear my cache. I’m getting bogged down. I have noticed little glitches — I make a sarcastic remark, I run just a little bit late, or I miss a significant detail. Then all of a sudden, I find myself on my couch — unable to function properly.

So what’s going to change? What have I learned from repeating this cycle over and over again? Sure, some things are outside of our control. We definitely are short-staffed, and since I am in a leadership position, it only makes sense that I would be working all the available hours. So what can change in my attitude about work? That’s a good question.

My husband has a saying, “care, but don’t care” —care for my students and their welfare, but don’t own responsibility for them. Love my students, give them my best, but remember that I can give them my best without giving my all. I’m not good at this. I’m an all-in kind of a girl, but I’m thinking I have to find a way to set my idle a little lower. I want to be present with my students and coworkers without owning their successes so deeply, without feeling each of their struggles so personally.

I think my tendency to overwork and over-care stems from a desire to be needed. I mean, I don’t get up in the morning and say, “Let me go pour my whole life into my students so that they will appreciate and value me.” It’s not that simple. Belief systems run deep; they operate in the subconscious. Perhaps I have this thought deep in my core that if I meet all the needs of my students, I will be worthy and acceptable. And that thought, which stems from insecurity, actually masquerades as superiority they need me, what would they do without me? 

But guess what, the world can keep spinning without me. If I am not able to go to work, students still meet with instructors. Progress is still made.

I’m an important player, but not so important that I can’t take a beat for self-care. I can pause to clear my cache.

I can stop working as though my worth depended on it. Because it doesn’t.

I am valuable, needed, and appreciated, even when I am in yoga pants and an oversized fleece on my couch. Sometimes my body needs that, so I’ll do my best to listen to its signals.

Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?

Matthew 6:25-26

Time Trial

You knew it was coming.  You read some blah, blah, blah I wrote about working 20-30 hours a week, and you rolled your eyes and thought to yourself, “Yeah, that’ll last.”

You think you know me?

Ok, fine.  I’m pretty predictable.

I was a few months into my current position when my supervisor asked me if I would be interested in doing a little more training to become a mentor to other instructors — newly hired clinicians who, by design, receive scheduled coaching. Well, yeah. I’d like to do that. I mean, 1) I’ll take any training you will give me. I love to learn;  2) I love observing  other professionals. It sharpens me as much as it sharpens them. So, bam, I became a mentor.

I was getting used to that position when I was approached again: would I be interested in being an instructional pacer. I’d have to get a bit more training regarding standardized tests and analyzing student scores. I’d also have to see how our instructional practices target the specific learning needs of each of our students. In other words, I’d have to understand the why and how of instruction.  Was I in? Definitely.

I was willing to step into these positions knowing that I would be called upon to work more than the hours I initially agreed to because although I’ve struggled with my health for six years now, I have been feeling fine since I started this job. Maybe it’s the fact that I had a series of steroid injections in my S/I joint in January (about the time I hired in), and my pain has been greatly decreased. Maybe it’s the consistency of the schedule — my work day never falls outside of standard 8-5 hours. Maybe it’s the positivity of the work environment — we clap, hooray, and celebrate all day long. Maybe it’s a combination of all these factors that have made this position a good fit for this time.

Whatever it is, I have decided that I’m willing to try full-time employment for the summer.  I’ll give it a shot and see how it works. If you’ve read my blog for any amount of time, you realize that I’m willing to experiment a little — I’ve followed an ultra simple diet, I’ve tried multiple medications, and I’ve worked a variety of jobs.  Each of these experiments has taught me something about myself and the ways that my body and mind function best. I’ve learned that my body prefers tea over coffee, that my skin breaks out almost immediately if I eat corn (even my much-loved popcorn!), that pharmaceuticals aren’t the best option for my super sensitive body chemistry, and that I work best in positions that provide boundaries that I wouldn’t normally observe on my own.

Let me tell you a little more about that.  Instruction at Lindamood-Bell is broken into hourly segments. Most of our students come in for four hours a day.  Each hour they receive 55 minutes of instruction followed by a five-minute break. The instruction — 55 minutes of highly focused cognitive work — is tiring. Our students work hard, and so do our clinicians! Because of this, everyone stops once an hour to take a break, get a snack, go for a walk, use the bathroom, play a game, juggle, laugh, or otherwise rest from the intense work of instruction. Likewise, once in the morning and once in the afternoon, everyone stops for a fifteen-minute break. Often during these longer breaks, we celebrate student accomplishments, have a group treat like ice cream, or engage in group play like the center-wide nerf gun war we had recently. Everyone works hard; everyone takes breaks. It is required.

This is not a rhythm I fall into on my own, but I’m learning from it.

This very healthy rhythm of work and rest is further emphasized by the expectation that employees are only to work while on the clock. For the first time in decades, I punch a clock before I meet with a student, answer a question, or even reply to an email! Last weekend, while on a short vacation with my husband, I logged into my work email and quickly replied to a question.  Not long after that, my supervisor emailed me and said, “Thank you for the response, now STOP CHECKING YOUR WORK EMAIL WHILE YOU ARE ON VACATION!”  I chuckled to myself,  logged out, and walked down to the beach. This position requires that I work while I’m at work and rest when I’m not. That’s a good rhythm for me, too.

The boundaries of my work environment make it a healthy place for me to work, and so does the climate. Because most of our students have experienced multiple educational roadblocks and frustrations, it is critical that we provide a positive climate. All day long we praise, give rewards, and slap high fives. Each time a student responds to a question, he receives a “good job” or a “great try”. If she masters something that has been tricky, bells ring and the whole center applauds. Instructors get celebrated, too!  If one staff member sees another staff member do something great, he writes it down, points it out, and gives recognition.  All day long, we work hard to create a culture that celebrates individual effort and achievement. We smile, we laugh, and we cheer.

This, too, is not natural for me.  I tend to analyze, criticize, and strategize. These skills have been necessary and useful in a variety of positions I’ve held, but they don’t necessarily build a positive culture. Rather, in isolation, they support a climate of striving and perfectionism. Anyone who’s lived in such a culture knows how stressful that can be. What I’ve learned though, is that I can quickly adapt to a culture of positivity, support, and celebration. In fact, just like many students who have struggled in other learning environments, I thrive here. I am even finding that my skills of analysis, critical thinking, and strategizing are welcome, as long as they are tempered by compassion. And, I’m remembering that compassion comes naturally to me, too.

Yes; this position seems to be a good fit for me, but will I be able to sustain these good feelings while working 8 to 5, Monday through Friday?  I’m not sure, but I hope so. It seems that I’m learning at least as much as my students are.

Let the favor of the Lord our God be upon us,
    and establish the work of our hands

Psalm 90:17

My Sweet Experience, re-visit

Yes, it’s gushy, but since I just saw Dr. Sugar yesterday, and since he rescued me when I had a significant flare while I was in Utah last week, I decided it was time to polish this post from March 2018 and share the gushing one more time, in June 2019.

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 ophthalmologists. 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.

Dr. Alan Sugar

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

Dr. LaPoint replied, “He is!”

Almost four years later, I have visited Kellogg more than 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’s 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 passed before my phone rang. The on-call doctor had already spoken to Dr. Sugar who had given him a message to convey to me: directions for how to proceed over the weekend and the message 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