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


Today I was getting ready to do a lesson with one of my students when our office manager informed me that one of my coworkers had gone home sick.  Would I mind combining two students’ instruction —  one, a nine-year-old doing language arts and one, an eleven-year-old who had a math assessment to finish?  Both of these students have specific learning needs and both typically receive one-on-one instruction.  I answered  I would be happy to combine them while thinking to myself, “well, this could get interesting”.

It is for good reason that most of our students receive one-on-one instruction.  They have all struggled in school and have the scars to show for it — low self-esteem, a tendency toward frustration, and the constant and desperate need for encouragement.   How was I going to juggle their needs?  No way to find out but to step into it.

I was almost immediately surprised.  “Hey you two,” I said, “Why don’t we find a space with a large table so that we have plenty of room?”  “Yeah!” they said almost in unison.  While a change in routine or venue can sometimes signal distraction or disruption, they surprised me by rallying and seeing this as an opportunity.  They helped me gather all their supplies — laptops, files, paper, etc — and we relocated so swiftly that I barely had time to register the change.

Still, I was cautious.  I wondered if we would get anything done at all.  Both of these students tend to need a lot of direction and re-direction; I pictured an hour plunked between them, dividing my time between getting each of them back on task and squeezing in little spurts of instruction.  Again, I was surprised.

The eleven-year-old almost immediately located the online assessment that he had to complete and announced that he could do most of it on his own.  The nine-year-old found herself a “special pen” to work with and then, looking at her ‘classmate’, decided to find him one, too.  “What a good idea!”  I said.  Her classmate received the pen, said “Thank you!” and got right to work.

While I guided the nine-year-old through her lesson, the eleven-year-old worked diligently on adding and subtracting fractions.  He politely asked me once if he had reduced the fraction as far as it could go. After I checked his answer and said,  “yes, good job,” I turned back to the other student.  She looked at him and added her own “good job!”  When the older student heard me tell the younger student, “You got it,” he chimed in with “Way to go!”

Guys, I did not script this.  They were genuinely delighted for one another.  He watched her jump up and down when she heard two target words in a song that I played.  She waited patiently when he and I worked through a more difficult problem together.  They even teamed up to good-naturedly poke fun at my singing ability! I praised them and rewarded them for their cooperative spirits and strong work ethics, but I truly believe that the opportunity to work side-by-side was a reward in itself.

The three of us were elbow to elbow smiling at one another at a table buried under two laptops, paper, pens, scissors, and scraps.  I said, “Hey, guys, I think we should do this more often.  What do you think?”

“Yes!” they agreed, in unison.

If you are not a teacher, you might not know that school doesn’t always go like this.  Classmates aren’t always encouraging toward one another.  They certainly don’t always celebrate the small accomplishments of students with learning differences.  In fact, it is often the opposite.  Students who struggle often have the added discouragement of being teased by their peers and even, I’m sorry to say, their teachers.

Not today.

Today was a sweet surprise.  Perhaps these two who have struggled so much have learned the value of being kind.  I learned a little myself.


Isaiah 11:6

“a child will lead them”


The Occasion

As a student, I hated group assignments.  I dreaded the moment when the teacher would put me with two or three other students and give us a task to accomplish.  I would groan, shoot the instructor a micro-glare, and reluctantly move over to join the others who were equally ‘enthusiastic’.  Why did I hate it so much? Was it because every group has a slacker and I hated the imbalance of effort? Or because I truly am an introvert?  Or was it the fact that I would have to approach a problem in a different way than I was familiar with?  Because if a teacher gave me a page of math problems, I could fly through them pretty quickly and end up with fairly accurate results.  If I had to answer comprehension questions on a chapter in US History, no problem.  Zip, zap, zoop. However, if a task involved more complexity and I had to sit in that complexity with a group of people who approached problems in different ways than my slam and jam method, that was uncomfortable for me.  I didn’t like it.

You might think that in my role as teacher I have avoided assigning group work because it made me so uncomfortable as a student.  Not true.  It’s been a bit of a psycho/social experiment for me to watch my students obediently trudge from their desks to the groups that I have put them in.  The ones who are like me grab the paper and just ‘get it done’, huffing and rolling their eyes the whole time.  They are missing the point — just like I was.

Often learning is not about the product, but about the process.

Teachers don’t put students into groups so that they can find the answers.  The answers have already been found.  Teachers put students into groups so that they can witness the processes of other people and so that their own processes might be refined.

In my current position, I am working with two students on a course of elementary science.  [If you know me well, just take a moment to digest that last sentence.] One student is a nine-year-old who is sitting beside me in Ann Arbor, Michigan.  She has pretty dramatic difficulty with reading and paying attention. The other student is an eight-year-old with less dramatic learning challenges who is sitting in front of a laptop in London, England.  We meet every day from 10-11am EST, which is 3-4pm in London.  As you can imagine, this arrangement requires involved technology, elaborate communication, and creative scheduling.  Why go to all this trouble for two little girls? We go to all this trouble because — and I have witnessed this first hand — the girls learn better together than they do apart.  Not only that, they share their lives with each other — tales of pet cats, horseback riding, and celebrating learning accomplishments. They giggle together as they squish clay to discover the properties of a solid, pour water to measure the volume of a liquid, and watch a steaming kettle to see a gas. They are learning about science, yes, but they are also learning how to learn and that the process of learning does not always have to be drudgery.

As a student, I was always pretty good at learning.  Give me the problems; I’ll find the answers.  I could figure things out on my own, thankyouverymuch.

I’m writing about this like it’s ancient history, but as you might’ve already guessed, not much has changed.  I still think my systems are working pretty well. Give me a problem; I’ll try to find a solution. Slam, jam.  I don’t go out of my way to find the refining process, nevertheless, it finds me.

Recently, our pastor, Gabe Kasper, referring to the writing of Kirkegaard, said that in moments when we meet a challenge to our preferred way of thinking and living we can find opportunities that produce personal transformation. Kirkegaard called such moments ‘the occasion’.

I am not a fan of such ‘occasions’.  I do not like change, perhaps because in order to change I have to acknowledge that my system wasn’t the best one after all.  My slam and jam method of getting assignments done wasn’t (isn’t) really teaching me anything other than how to check off boxes.  It wasn’t (isn’t) allowing me the space to sit in the complexity of a problem. My box-checking was (is) productive, but not transformative.

I recently stumbled upon a book by Barbara Brown Taylor called Learning to Walk in the Dark.  I had requested the book from the library because another author I love, Jen Hatmaker, often refers to Taylor in her own writing and speaking.  I didn’t know what I was asking for when I requested the book, but I was a few pages into the introduction when I found myself face to face with ‘the occasion’.  I was staring down a challenge to my preferred way of thinking and living. I had grabbed the book in the middle of a sleepless night, so I faced a choice at 2am — step into this transformational space or put the book down and forget I ever saw it.

I stepped in.

Taylor’s premise is that we are conditioned from childhood to avoid dark spaces.  Our parents tell us to come into the house when the streetlights come on.  We have night lights beside our beds.  We know where the emergency flashlight is for when the power goes out.  When things go dark — literally and metaphorically — we rush to grab a light.  My approach to getting caught in the dark is similar to my approach to math problems–I quickly find a solution. I turn on a light. Taylor suggests a different approach.  What if, she says, we sit in the dark spaces for a while? What if we acknowledge the complexity of difficult situations instead of rushing to find solutions? After all, she says, “when, despite all my best efforts, the lights have gone off in my life (literally or figuratively, take your pick), plunging me into the kind of darkness that turns my knees to water, nonetheless I have not died…Instead, I have learned things in the dark that I could never have learned in the light, things that have saved my life over and over again” (5).

I have another student who reminds me of me.  He wants my help super-fast so that he can score well on the test and get a good grade on the paper.  I sometimes get frustrated with him.  I say, “I know you want a good grade on the test, but I am more concerned that you fully understand the concepts.”  He sometimes blurts back, “What? You don’t care if I do well on the test?”  I do. I do care about his test, but life has taught me that the test will be over in a blink; the lesson might matter for much longer. If we don’t master the concept, we are going to have to revisit it over and over until we finally have it.

If you’ve been reading my blog for any amount of time, you know that this concept of sitting — literal sitting or figurative sitting — is not easy for me.  I want a super-fast solution to every problem.  I don’t know why, because each time I find a solution to one problem, another one takes its place as though it had been waiting in the wings for its turn.  I continually find myself standing in the dark.

In fact, at this very moment, I (and maybe you) face several circumstances that are pretty dark.  I would really like to turn on some lights, clean up some messes, and make everything perfect.  However, I’ve been using that system for most of my adult life, and I’m beginning to see that it’s a flawed strategy. So, I’m going to get comfortable here and just observe the space.  I’m  hoping that “the things I learn” here will “save my life over and over again.”

But guys, I’m not approaching this lesson alone.  I’ve assigned myself to a group project.  I’ve asked a few of my dear friends to join me because I know that although it’s not my preferred way of learning — I’d rather hunker down and check off all the boxes myself — they have different approaches that I can learn from.  What’s more is that they are willing to sit in the dark complexity with me for a while — not trying to turn on lights and clean up messes, but just to sit and observe and learn from the dark.

Exodus 20:21

The people remained at a distance,

while Moses approached the thick darkness where God was.