Coronavirus Diary #19: First-person Account

My phone pinged.

“Please return to the front desk for your test results.”

I’d been waiting 40 minutes since they told me it would be 20 minutes.

I’d been at the testing center for almost two hours. First I had to wait in line to get forms to fill out, then I had to wait in my car to be called for my test, then I had to wait in my car for my results.

We had planned to meet our son and his best friend who was visiting from out of state — just for an outdoor socially-distanced few moments. We had previously planned to do dinner together, but the Covid-19 case numbers were climbing. Across the country we’d been seeing new daily records every day, so we had changed our plans to an outdoor meet up where we would hand them dinner-to-go.

That was before I emailed my director of HR to tell her, “It’s probably just allergies, but my throat is a little scratchy, and I’ve got some post-nasal drip.”

She gave me the standard, “Please work from home until your symptoms go away, and you should probably get a Covid test, just to be on the safe side.”

What with our plans for a get-together, I almost didn’t go for a test. Seriously, it was probably just allergies. The weather was swinging from 20 degrees to 70 degrees inside of 24 hours. My sinuses typically react to these types of fluctuations. However, my husband, who has been overseeing the Covid response on the campus where we live, said ever so delicately, “It’s your decision, but I would recommend sooner rather than later.”

So, I drove to the testing site and began the process.

Did I mention this was on Tuesday? Election day? The election day that has expanded to an election week?

So here I am, on election day, sitting in my vehicle in a parking lot, one of a dozen or more waiting to be tested or get results. The people keep streaming in and out to find out whether or not they have Covid, whether or not they’ll be able to go to work tonight or tomorrow, whether or not they’ll have to cancel all of their plans for the next two weeks or more, whether or not they’ll have to notify everyone they’ve come into contact with over the last several days, whether or not they’ll be at risk to get deathly ill.

I’m convinced my test will be negative, that I’ll rush home, box up the food we want to give to my son and his friend, that we’ll enjoy our visit, that we’ll watch the election returns for a while, and that I’ll go to bed not knowing who will be our next president. I’ve got the whole evening planned, and then I get that text.

I walk into the testing center, give my name to the front desk, and step to the side. In moments, a young girl in scrubs calls my name. I follow her behind a door and into a room.

“Someone will be right with you.”

I start to panic a little. Why am I in a room? Why is ‘someone’ coming to talk to me? If I was negative, wouldn’t they just smile, say, “you’re negative” and I’d be on my way?

The door opens, and in walks a doctor.

I’m stunned. A doctor? Does everyone get a doctor? All these dozens of people all get to see a doctor?

“Have you been around anyone who has tested positive for Covid-19?” he asks.

“No, I am barely ever around any one.”

“Well, your rapid test came back positive.”

“Yeah, but how reliable are those rapid tests?”

“Ninety-seven percent.”

“Shit.”

“So, we are going to do a PCR test. That result will come back in two to three days. You must isolate for 10 days. The health department will call you.”

And someone else came in, put a second swab up my nose and into my brain, and I began to realize what was happening.

We wouldn’t see our son and his friend. In fact, when I got home, my husband met me at the door with a mask on. He was already making arrangements for others to manage his work responsibilities. I showered, got a little to eat, and went right into the spare bedroom where I vowed to stay until we knew if my husband, too, was positive.

When I called my director of HR, she seemed disappointed. I was the first positive case since the start of school in September. We had made it almost the whole first quarter — just three days shy. She had to get a letter out and tell our whole staff that we’d be working from home for two weeks. And, by the way, how was I feeling?

I’ll admit, I felt terrible. I felt guilty for getting sick. I felt responsible for the fact that my colleagues would all have to work from home. I felt overlooked, and I felt ashamed. How could I have let this happen?

But, guys, I didn’t let this happen. It just happened. It’s not my fault, it’s just my circumstance. Since March, my husband and I have followed the guidelines. We’ve worn the masks; we’ve socially distanced. We’ve avoided gatherings, and when on just a couple of occasions we’ve gone to social functions, we’ve stayed to ourselves and waved from afar. Since March, we have continued to wash all the food that comes into our house, we wash our masks after just one wear, and we use hand sanitizer until our hands are raw.

Covid-19 is just that insidious, just that contagious, just that powerful.

Today, as I write, the US has had 9.7 million confirmed cases and 236,000 confirmed deaths. I’m not special. I’m just one of many who have contracted this virus and one of the fortunate who seem to have a very mild case.

Today, on day six of my symptoms, I have a slightly sore throat, minimal sinus congestdion, a little nausea, and a sense that I’m “coming down with something.” It’s very mild, and I’m thankful. Yet even this mild case has an impact. Thankfully, I have a job that I can do from home for two weeks, and I won’t lose any wages. Thankfully, my husband tested negative (twice now) and he is able to quarantine away from me in the hotel where some of our students are also quarantining. Thankfully, I have the company of my faithful Chester, our senior golden retriever. Thankfully, I had just gotten groceries, and I have everything I need here in the house and plenty of people who are willing to run get things for me if I need them.

Everyone doesn’t have this experience. Many who get a positive test lose two weeks’ worth of wages — which would be hard for people like us who have a little in savings and very little debt but which can be devastating for large portions of the population who live pay check to pay check. Many don’t have a place to go when a loved one gets sick but are forced to coexist in an environment where they, too, might be infected. Many don’t have such mild symptoms, but suffer at home or in the hospital for weeks and even months. Many don’t have a stockpile of groceries or friends and family who can help them out while they shelter in place.

I’m inconvenienced, as are the people in my life, but I am not devastated.

Many upon many have been devastated by this disease. As the numbers grow, someone close to you — maybe even surprisingly you — may be impacted.

For the sake of those who aren’t as fortunate as me, please, wear your mask, wash your hands, stay at home, and postpone your plans.

Take one for the team.

At least until you are able and willing to get a vaccine. Ok?

Thanks.

do not merely look out for your own personal interests, but also for the interests of others.

Philippians 2:4

Coronavirus Diary 15: Wearing a Mask

I’ve been back in the office for two weeks now. I’d been working from my office in our little house by the river for almost three months when our company determined that we should be back in our physical space, so I packed up all my materials — laptop, auxiliary screen, student files, and other materials, and lugged them to my car, drove them across town, hauled them up two flights of stairs, and started to acclimate.

The first couple of days were especially stressful. I don’t know if it was the daily screening paperwork that I had to fill out every morning, the taking of my temperature, the putting away of all those materials (which I still haven’t finished), the spontaneously self-generating list of regular tasks that didn’t pause for a second as I learned all the new protocols, or the fact that I now have to wear a mask.

Of course I’ve been wearing a mask for months. It started in the early days when the only time I left our home was to go to the grocery store. I made a few masks following a simple pattern and using some leftover fabric I had here at home. Our church was making them for a local hospital, and since I have a sewing machine and we suddenly had lots of time on our hands, I began to mass produce them along with a small group of women.

On my weekly treks out, I not only donned a mask, but I wore latex gloves. I carefully procured my groceries, following arrows on the floor and being careful to keep six feet away from others. Back in my car, I would remove the mask and gloves, sanitize my hands, and then drive home where my husband would receive and wash all the items I purchased while I stripped and headed straight to the shower. In fact, we’ve kept this routine all these months. We’ve developed quite a system.

We’ve adopted these behaviors to stay safe — to keep ourselves from getting sick.

In those early days, I probably wore the mask for a grand total of 3-5 hours per week, but now that I’m back in the office, I am supposed to wear it for 8 hours a day!

I get it. Mask wearing is very important. The data shows us that our chances of spreading or contracting Covid-19 are greatly reduced by social distancing and wearing a mask.

So, I’m wearing one, but let me just say that it is challenging!

Probably the biggest reason I find face mask wearing challenging at work is that it covers my face and most of my facial expressions. I am an educator, and right now I see most of my students online. Working with students virtually has its own challenges, not least of which is the ability to communicate clearly. Since all the students can see of me is from the torso up, I am continually checking to be sure that I am centered on the screen, that my student can hear me clearly, and that I am allowing appropriate time to hear his or her response. I rely heavily on facial expression and hand gestures such as “thumbs up” and “high five” to communicate encouragement. Now that I am in the center and required to wear a mask, I lose my smile and the student’s ability to use the visual support of watching my mouth to understand what I am saying. (You’d be surprised how much we rely on this.)

My employer has done a pretty decent job of separating staff members from one another. I am sharing a room with one coworker, but we have a divider between our work spaces and we give each other a wide berth when we are coming and going. Additionally, we each wear a mask for most of the day. However, we have both determined that we will remove our masks when working with our most severe/youngest students for whom the mask seems a distraction or hindrance to instruction.

I am fine with this because my coworker and I have a strong relationship and we are both communicating about the ways in which we are continuing to limit our exposure to others outside of work — avoiding social gatherings, and wearing our masks when in public spaces such as grocery stores, doctor appointments and the like. We trust one another to act responsibly and out of concern for one another, so we feel comfortable several times a day removing our masks to work with these students.

I also dash outside once in the morning, once in the afternoon, and over my lunch hour to take off the mask and breathe some fresh air because I am just tired of wearing it! It fogs up my glasses, makes me feel hot, and smashes my hairstyle.

Wearing a face mask is annoying, but I am going to keep wearing one.

Why? Because in my county 37 new cases were reported yesterday. Michigan’s seven-day average is 508. The United States’ rate of infection and cumulative death count still far outpaces any country, even adjusted for population, and though people are still arguing about whether Covid-19 can be transmitted by people who are asymptomatic (or pre-symptomatic), each day we learn of more people who were infected because they gathered in large groups and chose not to wear masks.

Over 135,000 people have died in United States in the last few months, and we have been given a few simple instructions for diminishing further spread and death: 1) We should wash our hands, 2) we should stay away from people, and 3) we should wear a mask.

It’s really not a big ask.

Is it annoying? Yes.

Would I prefer not to? Yes.

But am I willing to take one for the team and do my best to stop the further spread of the coronavirus while thousands of medical staff are doing their best to keep people alive while wearing not only a mask, but often a shield, and all manner of PPE? while thousands of researchers, clad in hazmat suits, are working around the clock to find a vaccine, a treatment, a cure? Yes.

I’m willing to be a little annoyed — a little uncomfortable — for the sake of keeping myself and others safe. And what if wearing a mask turns out to be ineffective? I won’t mind, because at the very least, my choice to wear a mask signals to those around me that I am willing to care for them, to keep any possible infection to myself, and to join a united effort against this pandemic.

I think that’s worth something.

If it is possible, as far as it depends on you, live at peace with everyone.

Romans 12:18

Coronavirus Diary #2, And so we continue…

Now that we are who-even-remembers-how-many-days into our confinement, we’re settling in to some rhythms.

We were already getting up early every morning to read, pray, write, and exercise way before this all started; and we’ve continued. We had been going to work between 7 and 9 every morning, and that hasn’t changed. Our commutes are shorter, of course. My husband’s 300 yard walk to central campus has diminished to a mere 15 feet from bed to desk, and my four mile drive has shrunk to just a few steps across the floor.

His work focus has changed from supporting 1000-plus students on campus to continuing to meet their needs from afar while also keeping an eye on the physical campus and working with university leaders to respond institutionally, departmentally, and personally to in-the-moment changes.

My work has remained much the same. The company I work for has long provided remote instruction. I’ve worked with kids from Great Britain, California, Utah, Ohio, Florida, and Georgia. We have always preferred, of course, to have our students physically with us — close proximity allows us to more easily build rapport and create a culture of fun. However, I am seeing in this time of necessary distancing, that our staff is rising to the challenge to ensure that we don’t lose those elements. Last week two of my coworkers dressed as Wonder Woman to celebrate Superheroes day. Yesterday, during a break in an evaluation, four of my coworkers popped into my online “room” to greet the student I was working with — to say hi, be silly, and offer encouragement. For many of our families, the fact that we’ve been able to keep instruction going right on schedule and to continue to bring some elements of fun has been a stability in this otherwise disrupted season.

We both continue to work all day, but it seems that now that we are in the same space, we are finding time to go on more walks together — sometimes over lunch, often at the end of the day or on the weekend. We hear each other’s voices and perhaps have a better sense of what it is the other does all day long.

One change that I have welcomed is the decrease in the amount of time I spend in the car. To be fair, my commute was — during the height of rush hour — no more than 20 minutes, and even on a very errand-heavy day, I spent a relatively small amount of time behind the wheel. Still, now that I rarely leave my home, I wonder if just the act of getting in the car puts me in go mode more quickly than I am aware. When I jump in the driver’s seat, do I automatically start rushing — trying to get to work on time, squeeze in one more errand, and get home as quickly as possible?

I ask because I seem a little more chill these days. I don’t really get fired up on the five second commute from the kitchen to the home office. I might rush the last few minutes if I’ve spent too much time in the shower or if I’ve lingered over my writing a little longer than I’d planned, but it doesn’t feel the same. I don’t find myself arriving at work buzzing with adrenaline.

In fact, I feel less rushed and harried over all. I mean, I’m not gonna get caught in traffic, I don’t have to plan extra time to get gas, I won’t be rushing to the mall to walk on my lunch hour, and I don’t have to speed home to start dinner, because seriously, what’s gonna happen if we don’t get dinner made before 7pm?

My husband noticed that meal preparation has helped us both shift from the work day to the evening now that the lines between the two aren’t as obvious. We’re eating well. He’s enjoying building sandwiches every day for lunch. I’ve made fresh salads, roasted a large turkey breast, and made two kinds of soup. And after to all the work that goes into making sure that food is safe, we find ourselves appreciating each bite a bit more.

We — like many — have begun to handle our food much differently. I’ve become the designated shopper, and when I come home with bags of groceries, we do our best to “clean them” as we saw recommended in a video put out a couple of weeks ago. Once we’re done with that, I head straight to the shower and wash head to toe.

I went out early this morning to two different grocery stores where I, and all the other shoppers, practiced social distancing. Wearing masks and gloves, we walked down one-way-only aisles, stood at least six feet apart in line, and got what we needed and left quickly. When I got home, my husband met me at the door, and we removed boxes, wiped down plastic bags and bottles, and transported a mountain of produce to the kitchen he had sanitized in preparation. Then he began to wash and wash and wash.

By the time everything was clean and put away, we were wiped out and starting to question how much we actually need Brussel sprouts in our lives.

We’re reassessing a lot right now.

What do we really care about? Mostly family, friends, our health, and our faith.

How do we want to spend our time? Priority goes to self-care: Bible study, prayer, exercise, and healthful eating. Connecting and caring for others comes in a close second.

As we’ve Zoomed and chatted with others this week, consensus seems to be that we all feel a little powerless. We wish we could help those serving in hospitals, support those who are sick, and relieve those who are incredibly overwhelmed or lonely.

Last night as we “met” with a small group of friends, one man mentioned, “I just wish I could do something.” Another in the group, a physician, said, “If you are staying home right now, you are doing the most important thing. The only way to beat this is for us to distance ourselves from one another. This is your service right now.”

And so we continue.

And as we continue, we find little ways to help — phoning friends and family a little more often, tipping those who serve us a little more generously, offering one another a little extra grace as we get frustrated and grumpy, and praying that God will have mercy on us.

“Have mercy on us, Lord, have mercy on us.”

Psalm 123: 3

How are you doing? A Re-visit

On Monday I wrote about all the anxiety around going Back to School. Way back in March, the day before we in Michigan were ordered to stay home, I wrote this piece. It’s interesting to look back five months to see how we were feeling then, and to remind myself that we’re still here, still struggling, still in need of others checking in on us.

Now that it’s become more obvious that we are actually doing this — social distancing at a minimum and possibly even sheltering in place or quantining…

Now that you’ve purchased groceries and supplies with a different mindset than you’ve likely ever had before…

Now that your daily life has been transformed and you’re working from home, working under extremely stressful circumstances, or not working at all…

Now that you’ve been physically separated indefinitely from loved ones — the aged, those who live far away, or those who you don’t dare risk exposing to something you might be carrying around…

Now that schools are closed and you’re feverishly preparing lessons to deliver virtually or you’re exhaustedly managing all your responsibilities while also navigating your children’s schooling or you’re finishing your own coursework from home…

Now that restaurants and bars can only provide take out…

And — gasp — now that hair salons have been ordered to close…

How are you doing?

Are you experiencing unexpected emotions? Are you afraid you’ll get sick or, worse, that someone you love — someone who is at risk — might get sick? Are you worried about finances — is your job insecure or has it already been eliminated? Are you disappointed that your plans — graduations, vacations, weddings — will likely be postponed or cancelled? Are you angry that this is happening right now and to this extreme?

I’m right there with you. I’ve been riding an emotional roller coaster and trying to find my we can do this attitude — and sometimes I can, but I’ve also found myself more defensive and snarly and volatile.

My husband asked me the other day if I was washing my hands after touching the laundry and my thickly sarcastic response almost left a mark, “No, dear, I’m actually not washing my hands seventy-five times a day.”

This is a lot, guys. In a matter of just a couple of weeks we have moved from business as usual to a starkly different reality. We’re all dealing with a lot — relocation, disappointment, financial stress, and possibly illness — and most of it is out of our control. It makes sense that we might be having some feelings about it all.

And what are we to do with all of these feelings?

If I’ve learned anything in the last several years, it’s that we do well to feel them — feel them all. Then talk about them, write about them, paint them, create them, notice them — feel them.

It’s not shameful to have feelings — it’s human.

Last week, I watched A Beautiful Day in the Neighborhood, and one of the most significant scenes for me was when Mr. Rogers visited the bedside of his friend’s dying father. The family was gathered, aware of the reality, but nobody was able to speak it. Mr. Rogers, in his characteristic style, remarked that often people don’t like to talk about death — they consider it unmentionable. He then said, “Death is human. Anything that is human is mentionable, and anything that is mentionable is manageable.”

If you are having all kinds of emotions right now, that is human. And I am willing to bet that you know some other humans who are also having all kinds of emotions. We are not alone in our feelings right now. In fact, my pastor said this morning (his sermon is here) that “all of us are feeling isolated together”. Now is a very rare moment — a moment of world wide shared experience. A moment where many are reaching out and actually sharing the experience.

And during this time, we can mention the mentionable — we can speak about our fears, our worries, our disappointments, and our anger. These are all human responses, and they are mentionable.

When we are willing to mention them to one another, we might be surprised to find that they are manageable.

In the moments after I realized how harshly I had responded to my husband’s reasonable question yesterday, I quickly backpedaled, sputtering a few more comments in an attempt to recover, and finally saying, “We’re all doing our best right now.”

We are all doing our best to manage the manageable.

And we are bearing witness to one another — watching one another do our best. We see teachers practically moving mountains to deliver content in ways that they’ve never done before; we see our friends and celebrities popping up on social media reading stories, playing music, and posting encouragement; we see health care workers going in to work, putting themselves at risk to provide care; we see our spiritual leaders delivering God’s word through live streams, Instagram stories, and YouTube videos; we see grocery store staff scrambling to keep shelves stocked, offer delivery services, and provide sheltered hours for those at risk; we see one another stepping up and doing our literal very best.

So guys, when we have some feelings and they spill out onto one another — in rude comments, in unfiltered facial expressions, in clippy tones — let’s do our best to check in with one another. Instead of reacting, let’s pause, let’s ask one another how we’re doing, and let’s provide some space to share our feelings.

Over the past few days, I’ve found myself on the phone more than usual — talking with my parents, my children, and my friends. I’ve even joined several video chat platforms to participate in our small group Bible study, to watch our granddaughters jump into a pile of pillows, and tonight to catch up with a group of friends. I need the connection right now, probably because I’m having so many feelings.

I need to know that my people are ok. I want to hear how they are feeling. I want to tell them how I’m feeling.

This is time is unprecedented. It’s unsettling. We need each other, so let’s keep asking one another how we’re doing.

Therefore encourage one another and build each other up, just as in fact you are doing.

I Thessalonians 5:11

Time Out

Click to listen.

On Wednesday, as I was leaving work, I heard a parent ask our center director what our plan was as the coronavirus epidemic became more serious. I kind of shrugged my shoulders and walked out the door. I figured it would all blow over while I was out for a couple of days to help my mom recover from shoulder replacement surgery.

By the time I arrived at my mom’s house two hours later, the NCAA had determined that March Madness would be played without spectators. Before I went to sleep that night, our governor had ordered all Michigan schools closed for three weeks. The next day, all NCAA sports for the rest of the season were cancelled, Disneyland closed, and all of us entered a new reality.

Each day brings more closures, more cancellations, and more restrictions. Most of us have been impacted at work, at school, or at home. Some have had to reconfigure their daily lives for the foreseeable future.

Consider a two-parent family with three school-aged children who regularly rely on day care and school while both parents go to work. When the schools and the day care close indefinitely, what are they to do? What if they are doctors? police officers? paramedics? nurses?

Or consider a single father who counts on his hourly wage to support his small child. What if his place of business closes for the next several weeks? How will he earn money to pay his rent or mortgage? to buy food and diapers?

People in all kinds of unexpected situations are scrambling! What will they do?

Since I’ve been away from my normal life for the last few days, I’ve been able to pause and observe the varied responses of the people I have interacted with in person, over the phone, through email, and on social media.

I’ve been a bit removed.

I haven’t been, like many, scrambling at work trying to determine how to sanitize, shut down, and communicate an action plan. I haven’t had the necessity to trouble-shoot child care or purchase extra groceries or devise a work-at-home strategy.

Many of you have been in the middle of all that, and I applaud you. You are doing the hard things and figuring it out.

I watched one family hire a displaced child care worker to care for their young children who can not go to school or day care for a few weeks. I’ve seen my workplace switch all of our in-person students to an online platform in the space of one 8-hour day, even while they met the immediate instructional needs of all of our students. I saw our church community first adapt our worship gatherings and then shift course to cancel all gatherings and then begin rallying our troops to reach out and meet the needs of those in our city.

You all are showing up, caring for one another, and rising to the occasion.

We can do that — we can rise to this occasion!

While all of this bustling was going on, my mom and I were looking for something to do as she sat in her chair resting and icing. She suggested we watch A Beautiful Day in the Neighborhood with Tom Hanks playing Mr. Fred Rogers, beloved children’s television icon. I couldn’t help but be touched as I saw Mr. Rogers’ character teach the journalist who was interviewing him about appropriate ways to express emotion — how to manage fear and anger and sadness.

Aren’t we afraid and angry and sad? We’re angry that the store has run out of the things that we need. We’re afraid to go to work where we might get sick or unknowingly share a virus we might be carrying. We’re afraid of staying home for so long. We’re sad our plans — for trips, gatherings, and celebrations — are being cancelled for who knows how long. And what will we do with all those feelings?

Will we isolate? Will we lash out at those closest to us? Will we find ways to express how we’re feeling? Will we talk it out? write it down? cry?

I see some of you asking the hard questions — is this an overreaction? isn’t the flu even more dangerous than Covid 19? is this just the media’s attempt to whip us into a frenzy? And, I hear you. It does seem extreme.

However, whether we think the recommendations are overblown or not, they have moved beyond recommendations to directives. We’ve been told to create social distance, to avoid gatherings, and to stay at home. Nevertheless, even when the World Health Organization, the Centers for Disease Control, and our governmental leaders all say to “shelter in place,” we still have some choices.

We can choose what to do with our feelings about this. We can grumble about how ridiculous all of it is; we can piss and moan and shake our fists in the air. We can push against the communal flow, or we can turn.

And maybe we need to.

It seems to me that for quite some time many of us have found ourselves positioned against one another, pointing fingers and shouting accusations. We’ve argued over everything from healthcare to guns to sexuality to abortion. We’ve gotten really good at converting our fear, our anger, and our sadness into attacks on each other. And how’s that been working out for us?

Do we feel good about the distance we’ve created with all this finger-pointing and name calling? How would we respond to our children acting this way? Would we allow them to continue, or would we give them a time out?

As we are forced to pause our lives in the midst of a political climate that is so emotionally charged, are we being offered a communal time out?

What if this virus, this quarantine, this season is an opportunity for us to check ourselves? What if being stopped dead in our tracks is giving us an opportunity to see that we’ve lost our way? What if we pause inside our homes, look at the people that we love, and decide that we can do better than we’ve been doing? What if we can choose right now to care for others regardless of the differences we’ve had with them in the past?

Mr. Rogers said that his mother responded to scary news by telling him to ‘look for the helpers’. This week I have seen many helpers. I’ve seen you reaching out to one another, being creative, and finding ways to encourage one another. You’re posting cheerful videos, providing suggestions for stay-at-home activities, and cheering one another on. I saw one dear old friend post a video of himself reading The Cat in the Hat and challenging others to post videos of themselves reading their favorite stories.

That’s the kind of people you are — the kind who show up in difficult situations to care for friends, strangers, and even those who tend to annoy you.

While I was cheering my mom on this week — encouraging her to exercise, helping her get dressed, and offering her ice cream cones — the world around was feeling a little chaotic, and still friends brought food, family delivered flowers, and others made phone calls, offered prayers, and provided guidance.

Many were helpers.

I think one way that I’ll deal with stress, fear, disappointment, and anger in the coming weeks is by watching how all of you show up for each other. I’ll be looking for the helpers and learning from them during this time out.

Turn from evil and do good; seek peace and pursue it.

Psalm 34:14

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, A Re-visit DRAFT

Early in my journey with chronic illness, I wrote this piece as I was just figuring out all the factors that contribute to my wellness. This past Monday, I posted this piece, a commitment to adjusting some behaviors that had morphed during Covid. What follows is a piece I wrote in August of 2019, further evidence that in order to stay well, I must continue to return to my 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

Being Sick

Day 9: I’m on day nine of sore throat, cough, sinus pressure, and fatigue. It’s just a virus — perhaps the common cold, certainly nothing to write home about. Yet, this annoyance has driven my decisions for over a week. It has kept me home from work and church. It has forced me to cancel plans. It has diminished my appetite. Both my husband and I have searched stores for relief — homeopathics, over-the-counters, and all sorts of home remedies such as soup, and tea, and popsicles. Nevertheless, I haven’t been able to greatly impact this bug; I have just had to endure the seven to ten days that the doctor told me to expect.

This morning, when I woke up to a new symptom, I thought to myself, “That’s it! I’ve had it!” I jumped through the shower, took a second trip to urgent care, and heard the doctor say, “These things usually start clearing up in seven to ten days. Since it is persisting, we will try an antibiotic.” I was momentarily encouraged. “Yay! An antiobiotic! I’ll start feeling better!” However, on the ten minute ride back home I deflated quite quickly. Hadn’t I thought several times over the past week that I was getting better? Hadn’t I almost willed myself to health with positive thoughts? And yet hadn’t I crawled into bed dosed with cold medicine, clutching tissues, and sucking on cough drops every night for the last nine nights? Why did I think one little antibiotic would change anything. I’m doomed to be sick forever!

Melodramatic? Certainly. Authentic? Absolutely.

It’s just a cold. This, too, shall pass! It’s not like I have a ruptured spleen or a broken arm or even an infected tooth. I have survived countless colds in my life. So have you. But, you know, that isn’t much comfort to me right now, because I don’t see myself surviving. I see myself suffering. And although my husband is doting and my employer is understanding, I’m not looking at the positives right now. I can only focus on the fact that my sinuses are dripping front and back, I have gunky clogs in my throat, and I’m running a low grade fever. I’m not even mildly comforted by the fact that I’ve got a reason to wear yoga pants and a sweatshirt on Sunday morning.

Guys, I am focused on my misery.

Why is it that such a temporary minor situation can toss me to the depths?

To be fair, I hung in there like a champ all week. On day one, I wouldn’t even really admit I was sick until around 5pm when I finally admitted that, “gosh, my throat has been hurting since yesterday and my whole body kind of aches.” On day two, I missed church, but had every intention of making it to work the next day. After calling out on day three, I thought, “I’ll be able to kick this if I can just stay home one more day.” On day five, I trudged into work, fueled by alternating cups of tea, water, and cold medicine. Day six and seven I soldiered through, and even when day 8 found me falling asleep on the couch in the middle of the day, I thought to myself, “just one more day of resting and I will be able to function normally all next week.”

And today? Today I just can’t rally myself. I buried myself in blankets and slept for a while. I rehearsed all my miseries and the fact that nobody likes me, everybody hates me, and I might as well go eat worms. I started a new book. I ate a popsicle, and I am finally acknowledging that no, my throat really doesn’t feel any better. No amount of positive thinking is going to change that. It’s just gonna take more time.

My students used to say, “it be like that sometimes.”

Day 10: I came to a realization about 2:30 am when I woke up coughing and dripping, having already notified my employer that I would miss yet another day of work. I groaned audibly as I pushed myself to sitting and trudged to the kitchen for the next round of cold medicine.

In that semi-conscious state I heard myself saying, “Kristin, you can’t do anything about it. Just be in it. You’ve been pushing back and trying every treatment you know for nine days. How about today you just lie in bed, read a book, drink your fluids, and wait for the healing. It’s gonna come.”

And something shifted. I started this journey in denial, “I’m not sick,” and quickly moved to pragmatism, “I’ll kick this bug with the old rest and fluids regimen.” Then I donned my positive, “I’m feeling better every day,” for as long as I could until I found myself slunk in misery muttering, “I’ll never be well again.” But at 2:30 am, when I acknowledged that there was nothing more I could do, I just had to be, I relaxed. I slept soundly until 8:30 this morning before crawling into a warm bath. Then I had a little breakfast and cuddled up next to my dog.

And now that I’ve chronicled this very mundane journey, I’m going to climb back into bed with my book. I’ll be there the rest of the day.

The Lord sustains them on their sickbed and restores them from their bed of illness.

Psalm 41:3

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