Hills and Valleys

Hello Friends,

I hope you are doing well as we near the end of October. This post will be brief, but I wanted to share that Grace has been struggling with new health challenges related to her traumatic brain injury (TBI). As she’s mentioned in previous posts, Grace’s doctors finally found a medication that controls her seizures enough for her to go outside without sunglasses, watch some movies, and enjoy some other “normal” activities, although she does still have a few seizures every month.

In the past weeks, complications with Grace’s TBI have brought me and Grace’s family into a new stage of caregiving. We are still working with doctors to find a medication solution for these new complications. Grace is not ready to write again just yet, but when she can she’ll provide some additional details regarding these new developments.

In the meantime, she asked me to post this devotional that I shared with my colleagues as part of a devotional series at the VCS Conservatory a few weeks ago; I hope it will encourage you. Thanks for continuing to walk with us through hills and valleys!

At Least I Won’t Get Tetanus…

Mom is long overdue for a picture on the blog!

“And you’re still having seizures?” My primary care doctor scrolls the “ongoing health conditions” cluttering my electronic medical record. Different providers have coded my seizures differently over the years without bothering to streamline previous entries.

“Sort of. I stopped having huge ones after I started that medication at the top of the list, but I still have smaller ones a few times a month.” 

“Never mind. It says ‘epilepsy’ way down at the bottom.” She scribbles a final note on my disability recertification forms, then hands the packet back to me. “Epilepsy, history of stroke, history of traumatic brain injury. That should do it.”

“Thanks so much! Sorry I have to bother you with a bunch of paperwork every year.” I fold the papers and reach for my purse.

“Oh wait – ” She frowns at the computer. “ – it says here you’re due for a tetanus shot. I’ll have the injection clinic call and set something up. Stay safe!”

By God’s grace, I have stayed safe through an eighteen-month pandemic and three rounds of Covid injections. Yet the same was not true of my tetanus booster this past Wednesday. Mom shuttled me to Kaiser at 8:30 am for what was supposedly a quick injection – until I started having seizures on the way home. They didn’t stop until around 7:30 pm.

Two years ago, fifteen seizures would have been an automatic ER trip. I’d like to think we stayed home this time because we’ve accumulated neurological life experience, and this may be true. I remember reminding Mom that there’s not much ER doctors actually do unless someone has an abnormal seizure or stops breathing. Although my memory gets fuzzier after that, Ivan must have agreed with me since he taught all his classes that day.

But whether or not we possess deeper neurological wisdom than in previous years, I suspect the real reason we stayed home is that we’ve gained perspective on what constitutes a “routine emergency.” I was not in danger of dying from my current symptoms, unlike the day I got food poisoning and had sixty-seven seizures in twenty-four hours.  

In fact, Wednesday featured several other protagonists with significant needs: Dad is still mid-recovery, and Mom is facing the physical and emotional grind that all caregivers face, no matter how much their loved one is improving. The last thing she needed was a second, higher-maintenance mouth to feed. (I mean this literally, since I stayed at my parents’ condo while Ivan was at work.) As for Ivan, next week is his choirs’ first live performance in two years. The last thing he needed was an absence two classes before showtime. 

But Wednesday’s biggest lesson was one of gratitude. Four years ago we used to wake up each morning wondering how many seizures I was going to have that day. Three years ago, we’d wake up praying I wouldn’t have an atonic seizure, since I often struggled to breathe and took hours to recover. Two years ago, I had fewer big seizures but still worried about little ones: a single incident could spark a week-long migraine. This year, I still have seizures and migraines several times a month, but thanks to better medication they’re no longer the first thing on my mind in the morning. 

Sometimes it takes a really bad Wednesday to notice how many answered prayers I’ve taken for granted. 

Truth in Trials

Hello, Blogging Family! Some of you know that my Dad’s been experiencing some health issues over the past few weeks. I mentioned in my last post that Ivan and I limit what we post about own lives online, so I won’t get into specifics about Dad’s health out of respect for his privacy. However, I would like to share what God is teaching me through an experience where I’m helpless to help someone I love. This is a trial we all experience at some point, and I hope these thoughts encourage you in some way.

Since my post-accident memory isn’t the best, I could only remember encouraging Bible phrases – not passages – as Dad’s situation developed. The first phrase was one I’d been praying over for most of the summer as it applied to witnessing for Christ in a secular society: “…We will speak the truth in love, growing more and more like Christ…” I was curious why God kept bringing this phrase to mind as I prayed for my Dad, so I looked up the original passage:

“Then, we will no longer be immature like children. We won’t be tossed and blown about by every wind of new teaching. We will not be influenced when people trick us with lies so clever they sound like the truth. Instead, we will speak the truth in love, growing more and more like Christ who is the head of his body, the church.” ~ Ephesians 4:14-15

Dad’s situation seemed detrimental to his ministry goals, and I thought it was even more unfair that my parents would experience their own health trial after they’d sacrificed so much for Ivan and me. But after reading Ephesians I realized I was buying into the “fairness” ideology that doesn’t account for God’s grace. I can’t always make sense of His  plans, but I have to trust that the God who sacrificed his Son for our sins – the epitome of an unfair bargain – sees our needs and will meet them perfectly. 

The second verse that was cycling through my mind was: “Put on your new nature and be renewed as you learn to know your Creator and become like Him.” (Colossians 3:10). I’d been pondering this verse for a while, and it seemed fairly obvious that trials offer a deeper opportunity to take up my cross and rely on Christ. Still, I was still curious to look up the whole chapter and see how context altered or expanded the idea: 

“Since you have been raised to new life with Christ, set your sights on the realities of heaven, where Christ sits in the place of honor at God’s right hand. Think about the things of heaven, not the things of earth. For you died to this life, and your real life is hidden with Christ in God. And when Christ, who is your life, is revealed to the whole world, you will share in all his glory.” ~ Colossians 3:1-4

These verses actually come before the verse I’d been considering. The only way to put on our new nature as Christ-followers is to fix our eyes on the prize he’s won for us: an eternity with God in heaven. As much as I love my Dad and am praying for his health issues to be resolved, I can take joy in the fact that Christ has already ensured his spiritual welfare, and that we’ll all spend an eternity worshiping God in heaven.

And finally, there’s the book of James. It wasn’t hard to remember James 1:2 after five years of memorizing it every year as a kid in AWANA: “Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy.” But I still wanted to see how the passage ended since I’d been so encouraged looking up Ephesians and Colossians. Sure enough:

“For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.” ~ James 1:2-4

This passage contained the four words that struck me the most of anything I’d read so far: So let it grow.

My natural tendency is either to resist trials or pretend I’ve got them under control. As I watch a loved one suffer, I’m also reminded I have the potential to resist on someone else’s behalf. Surrendering a trial’s outcome to God is the hardest response, but James says it’s the only way to increase our endurance. 

So let it grow. 

We’re still not completely of the woods with Dad. On a personal level, my brain injury damaged the part of the brain that connects logic with emotion, so reviewing what is true about God doesn’t always counteract anxiety. But the Holy Spirit is bigger than both struggles and God promises to remain faithful as we renew our minds daily in His Word. My hope is that these passages can encourage those of you facing uncertainty – and inspire you to be curious about the context of every verse God uses to encourage you along the way. 

The First Chapter…Literally.

Some of us still work best by hand…

Good afternoon, everyone! I hope everyone in the US is enjoying Labor Day weekend, and that you all are staying well. 🙂

Ivan and I often joke that we post less than 10% of our lives online, both for our own privacy and for the sake of those around us, and this has proved especially true in 2021. That being said, I’m excited to share some news I’d planned to post earlier this summer but have delayed given a variety of reasons, including appendicitis

For better or worse, I try to avoid discussing a project until I’ve finished it. My MFA in creative writing is 4 ½ years long, which is why I don’t usually mention it on the blog. Although this is still my modus operandi, I wanted to pause and give a brief update since I’m at a point in my degree that’s relevant to you all. 🙂

Just to review, I’m working on an MFA in creative writing. Although “MFA” stands for “Master of Fine Arts” it’s the writer’s equivalent of a doctorate, and I’ll be qualified to teach at a university after I graduate. (As a point of reference, the average master’s degree is 36-45 units long, Ivan’s doctorate is 60 units, and my MFA is 90 units.) The main reason my degree isn’t called a doctorate – at least according to what I’ve been told – is that there’s no foreign language requirement.

The other difference between an MFA and a traditional doctorate is the dissertation. Instead of writing an academic dissertation in order to graduate, an MFA candidate has to write a publishable fiction or nonfiction manuscript as their thesis. One of the reasons I went back to school was that I wanted to write a book about how God’s worked in our lives through the accident, but also I wanted to have the technical training to do it well. It’s hard to believe I’m ready to start working on my thesis! Reaching this stage is also exciting since I’ll have intensive faculty oversight and feedback while writing. 

But navigating faculty oversight may also become more complex as the manuscript develops. While I’m grateful to study at an amazing school like SCAD, I’m also cognizant that the Christian message I’ll be weaving throughout my manuscript falls outside what the school typically endorses. 

I began sketching some opening chapters in July, but I’ve spent the majority of my summer praying for wisdom about what and how to write. While some of my content will come from this blog, much of it will not: my goal is to show Ivan and me in weak moments as well as strong ones since God’s power is perfected in our weakness. Content aside, I’ll also keep seeking wisdom about how to integrate instructor feedback with Christian values. God’s given me amazing faculty who continue to push my technical growth, but I’ve also used “technique” to justify cutting or softening overtly spiritual content in my past artistic work. 

My hope is that with continued practice and plenty of prayer, I’ll be able tell our story in a way that honors God and my instructors at the same time.

I’ll keep you posted as we get closer to January 2023…And yes, it does take that long to draft a book. 

Facing the Mirror

One of the most exciting perks of purchasing our own home was the art. Although Ivan and I love art from a variety of cultures and influences, we’d opted to stick with a couple of neutral prints until we knew where we were staying long-term. We couldn’t wait to jump into the world of “real” art this past February – even though we imagined that making the jump at the same time as buying a condo might limit us to one original painting. Once we started shopping, we realized that our budget limited us to an original  5”x7”. After some careful consideration I decided “wall art” was almost as good as an original painting, and finally found a Peruvian mirror handcrafted in the Cuzcaja style (a traditional technique using reverse-painted glass). We hung it in our dining area, and I couldn’t believe that I’d be staring up at its delicately painted flowers each day while I wrote.

I only enjoyed the mirror for a couple of weeks. Once an angry complex resident discovered I was disabled and found ways to harass me while Ivan was gone, I grew convinced they knew when I was writing at our kitchen table. TBI exaggerates many people’s “fight or flight” instinct to extreme levels: I had no problem admitting it was irrational to think someone could see me in our dining area, but that didn’t keep me from hiding in the back of the house as soon as Ivan left for work and I was home alone.

Those days are in the past with God’s help, and support from a wonderful trauma therapist at Kaiser. But as I was admiring our beautiful mirror the other day, it struck me that my bizarre experience might not be so bizarre after all. How many of us had brilliant hopes for 2021? Covid seemed like it was on its way out, whether you were counting on the vaccines, herd immunity, warm weather, or some other intervention. The grueling 2020 elections were over, whether your side was successful or not. More and more businesses were posting job listings on websites or “now hiring” signs on their windows.

But as summer begins to fade, some of these hopes seem to be fading with it. The Delta variant is casting a shadow of uncertainty over our country – and even greater tragedy over others. The political situation in the U.S. hasn’t stabilized as much as we might have hoped, especially for believers. Those of us who live in California are facing a second year of extreme wildfires. 

So what do we tell ourselves and the world when we face trials that feel like the opposite of what we rightfully deserve? I certainly felt like I’d earned a peaceful, beautiful home after all we’ve endured over the past five years. Interestingly enough, the Apostle Paul uses a mirror as an example to answer that question in 1 Corinthians 13. “Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity,” he tells us. “All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.”

I’m grateful to have moved past the situation that kept me from enjoying our mirror, although I still can’t discern any benefit from the trial – even looking back on it almost six months later. Whether or not the events of  2021 make sense in the present – or the immediate future – I’m also grateful we trust in a God who’s provided everything we need for our eternal future through his Son, Jesus. And if we can trust Him with our eternal future, we can also trust He’ll provide answers for our most confusing trials, whether those answers come in this life or the next. 

A Musical Thank You

“Selamanya” by Ivan Utomo

Happy Sunday, Everyone! Ivan and I have been incredibly blessed by your prayers, messages of encouragement – and stories of similar appendix mishaps! 🙂

An obscure fact about my life as a stroke survivor is that I still do physical therapy for an hour a day to maintain balance, coordination, and circulation. Over the years I’ve found methods that are fun as well as effective, so the deal isn’t as tough as it sounds.

As you might have guessed, appendicitis has put me on a therapy hiatus until the end of August. I spent my blogging hiatus learning a short piano piece after I discovered that I can still play the piano in spite of not being able to feel my left hand, so it only made sense to dedicate my therapy hiatus to continue exploring the piano.

This is a simplified version of the song Ivan wrote for our wedding processional. (Selamanya means “forever” in Indonesian.) I wanted to share it with you as a thank you for all the wonderful “get well” wishes!

P.S. My goal is to record a full-length piece of classical music by the end of the year, so stay tuned!

A Routine Emergency

Return of the hospital selfie!

I’ve always been a Type A, cover-every-base-twice, kind of girl. You could argue this is genetic since Mom and Dad are the same way. Ivan originally fell somewhere on the Type B spectrum, but the past five years have convinced him that our best shot at “normal” life requires anticipating – and eliminating – potential hazards.

As most of you know, my seizures have stabilized enough over the past year for us to buy our own place, even though that means we no longer live down the street from my parents. I knew enough to keep myself safe until Mom could finish the twelve-minute drive, we reasoned. And VCS and Hillside were only seven minutes away if I were really in trouble. But last Monday we discovered none of us had anticipated a run-of-the-mill emergency.

Last Monday, I woke up at midnight with a stomachache. It’s been at least six years since I had a true stomach virus, so I’d forgotten what the average bug feels like. I also have an unusually high tolerance for pain, which persuaded me that my virus probably wasn’t bad. 

By 8 am I was more nauseated but still determined I was okay, so Ivan texted Mom to be on standby (even a cold can trigger surprise seizures) and went to work like usual.

10 am found me growing suspicious of my little bug, so I called Mom for an objective opinion:

“You remember that thing you had a few weeks ago – that thing where you got nauseated every time you ate?”

“Yes! I was up and about every morning after a couple hours…Do you think you have that?”

“Did you have a stomachache?”

“Well no…”

“Like by your right hip?”

Silence for a minute. 

“That would sound kind of bad to me…except you’re still talking like normal. I’ve heard that appendicitis hits people like a wave. I think you’d be doubled over by now, barely able to get a word out. Why don’t you go back to bed and give me another update in a few minutes.”

I hung up and lowered myself tentatively into bed. Something was definitely wrong with my stomach. When my phone timer went off twenty minutes later, I couldn’t sit up.

It took Mom, Dad, and Ivan to get me out of bed, into the travel chair, and down the sidewalk. Looking back, I believe my main motivation for surviving the twenty-yard trek was to skip the ambulance fee – plus any possible embarrassment should this turn out to be a bad stomachache after all. 

We arrived at Kaiser around 12:30 pm, only to discover that the real battle had just begun. My brain injury allows me to bring a caregiver with me in spite of Covid – a special providence since I was nonverbal from pain and I can’t always think straight under stress, even in normal life. But the brain injury that typically pushes me past triage during neuro emergencies suddenly seemed to work against me for a “routine” emergency. The nurse seemed to think that a TBI patient signaling her pain was at a 9/10 could mean anything – even after Ivan assured them that I usually under-reported pain. How could they know I didn’t cry like a baby every time my stomach hurt? For our parts, we didn’t know that appendicitis usually occurs in teens and young adults, so I was actually a bit old for the infection.

They finally called my name around 4 pm. I’d been doubled over in the waiting room for over three hours.

Thankfully, my situation improved once the CT scan showed a very inflamed appendix. My attending doctor ordered surgery immediately; although this involved waiting until the OR opened at 8 pm, at least the next few hours included a warm bed, antibiotics, and pain medicine. Surgery finished at 10:30 pm and I was discharged at 12:30 am.

As Ivan posted last week, we really appreciate your prayers during the surgery. Appendectomies are routine, but general anesthesia is risky for me since it can cause blood clots and I’ve had two strokes and a brain injury, and also take several seizure medications. Anesthesia can impact “cognitive rebound” post-surgery as well: it was a couple of days before I could complete a simple task like writing an email to ask for homework extensions or walk down the hall without wobbling. 

This post would be remiss if I didn’t thank my wonderful family for their support. Things look a bit different since we no longer live in the same neighborhood and I could only have one “caregiver” at a time in the hospital, but everyone jumped in to keep things going, as usual. From the group effort to get to the ER, to Mom staying with me pre-op, to Dad waiting at our condo until 1 am to help get me inside, we couldn’t have survived those twenty-five hours without them. Special thanks also go to Anna and Robert for hopping on grocery duty later in the week, and to Ivan’s family for their prayers. 

 This past week has been a good lesson that “no emergency is routine when it’s happening to you,” as Dad likes to say. The 3-6 week recovery window seemed like no big deal when I was still loopy in the post-op room, but it now feels like a very big deal as I watch Ivan checking off all my chores from his daily planner and thank Mom for yet another pot of chicken noodle soup (nausea is a thing!) 

Moving forward, I hope I’ll be slower to say “That doesn’t sound too terrible” when I hear about someone else’s ER run. God might be reminding my prideful side that a lot of pain has nothing to do with being hit by a car. 

Some Good News

Because there are way too many selfies on this blog…

Hello everyone! I mentioned in my last post I had some updates I’d planned to share back in March once we settled into our new home. That didn’t work out since I had to take a blogging break, but I’m excited to share them with you now as we enter summer.

This past January, I changed neurologists since the Kaiser doctor who’d been treating me after I left Stanford retired. If you’ve been reading the blog for a bit, you might have noticed that seizures and migraines determine a large part of my daily activities. If you’re a long-time reader, you probably know I have a complicated and often unpleasant history with neurology in general. Needless to say, I was nervous about meeting my new doctor: How could she handle my case when many sub-specialists had given up? I was skeptical since Kaiser San Jose is a local facility, while Kaiser Redwood City is regional and Stanford is national.

Thankfully I was wrong.

This newest neurologist has been the most proactive and open-minded doctor I’ve worked with to date, and she started adjusting my medications at our first appointment. Experimenting is physically unpleasant, but after three months we found a combination that reduces my seizures and even allows me to go out without sunglasses sometimes. Fewer seizures also means fewer migraines; this improvement has given me the highest number of pain-free days since 2019. (At my worst, I had a migraine 30 out of 30 days per month. Now I have 8-10 migraine days per month.)

These medical improvements, plus the fact that our new home is in a quiet complex far from the noise and flashing lights that typically come with a big city, should have made the March transition to our condo much smoother and healthier than it was. Still, Ivan and I are excited to explore our neighborhood now that I’m almost finished with treatment for the TBI complications from our move. Seizures, migraines, and TBI may be here to stay, but we’re grateful God provided a new doctor with an effective approach to my lifestyle challenges. 

As always, thanks for your prayers and support!

Writing Between the Lines

Grateful for time together now that Ivan’s on summer break 🙂

“Loneliness feeds on itself like a dark star.” This is sentence is out of character for me, even though my creative work has evolved at SCAD and sounds noticeably different from what I write on the blog. What hasn’t changed is the way my faith influences what I write – a fact that’s increasingly controversial as I begin planning my thesis. 

You can probably imagine my colleagues’ curiosity last quarter when I finally showed signs of cracking. Even though I took a break from the blog during my TBI downturn, I didn’t have that flexibility with school: skipping a quarter or dropping a class meant forfeiting future financial aid. Art mimics life, and all I could portray was what I was experiencing each day: loneliness, fear, disappointment. Part of me knew that those feelings wouldn’t last forever, that eventually God would heal like He always did. But that knowledge didn’t overcome my present emotional morass. Brain injuries make it very difficult to think about hypotheticals, including the future. (For those of you who’ve read the blog a long time, you might have noticed that the only time I mention the future is when we’ve made specific plans.)

As I wrote about my current isolation instead of about Ivan and I overcoming past obstacles, I noticed my reviews improved. “So much more believable!” was the general consensus. (Even though I’m specializing in nonfiction, I’m still graded on character development like a novelist.) After a couple of assignments, I realized the isolation pieces were portraying a one-dimensional picture of my current situation; my best solution was to switch to writing about violin for the rest of the quarter. Most students stick to their thesis topic after a certain point in their degree, but I couldn’t keep producing work that suggested my earlier “overcoming” pieces were less than honest. 

Nevertheless, as I thought about this quarter’s “believable” pieces, I realized they weren’t entirely dishonest. Loneliness does feed on itself – or at least mine did. The more I dwelt on how no one understood what it was like to be secretly harassed, or how the situation wouldn’t have bothered me so much if I didn’t have a brain injury, or how Ivan should have figured out what was going on even if I couldn’t tell him – the more I dwelt on those things, the lonelier I  became. 

I don’t know if I will clarify my work this past quarter and remind my colleagues that writing about my accident is more complicated than faking success or admitting defeat. The limitations of distance learning may mean letting this quarter go and trusting my completed thesis will speak for itself. In the meantime, I’ve been reminded that words on a page last longer than notes in a practice room or even a concert hall. Violin used to be my release during crises; now writing has taken its place, even if imperfectly. But unlike old recitals, my words will exist long after I write them. They’ll also impact how others view my past and future work, and ultimately my testimony as a Christian writer. 

Thanks for sticking with some heavier posts recently – next time I’ll be sharing some exciting updates we’d originally planned to post in March. 🙂

Not Always the Overcomer

Coffee in Carmel on our first post-Covid outing 🙂

I’ve started several follow-up posts after the piano video, but this is the first I’ve finished. It’s difficult to know where to begin, since taking a blogging break was one of the hardest things I’ve done after I started writing in 2017. My message has been the same for the four years: Life isn’t about what happens to you, it’s about what you do with it. God’s given me a unique perspective on this topic, although it’s not the kind of perspective I would volunteer for. Nevertheless, He’s sustained me and my family through a difficult recovery, and given us vibrant lives after some of my limitations became permanent. 

This past March, I made the mistake of thinking Ivan and I had “arrived.” I knew that purchasing an affordable condo in an expensive city was a gift from God, but something in my heart whispered that we’d earned it. After all, how many couples spend their first five years of marriage on a medical rollercoaster? But we quickly realized that our miracle condo with the perfect indoor lighting and beautiful neighborhood park came with a psychological hazard that was far more sinister than our old complex’s fluorescent lights and busy downtown streets. And this hazard sparked a downturn that I wasn’t mentally or emotionally strong enough to write through.

For the first time since my accident, I found myself asking “Why?”

Why couldn’t something go right, just this once? Why did I always lose what mattered most – first violin, now writing? Why was TBI finally taking its toll on me and Ivan after all these years? Why was I so alone?

Hopefully you can see those questions aren’t accurate. Everything about the actual condo was still “perfect” after Ivan and Dad took care of the neighbor situation. I hadn’t “lost” writing at all, I was just taking a break from the blog. Yes, my brain injury was taking a toll on us, but we were also getting help to manage the recent trauma. And even if no one else could completely grasp the severity of what I was experiencing, I was absolutely not alone.

The writer of Hebrews says Jesus faced all the same trials we do without surrendering to self-pity or bitterness. He completely understands our pain, and empowers us to persevere – if we’re humble enough to ask.

Over the past six weeks I’ve realized that the stories I present here are usually the “overcomer” stories that end with a smile or are tied with a bow. I still believe these are some of the most important stories because they illustrate how God uses all things for good. On the other hand, God uses all things for good – even the stories when I don’t feel or act like an overcomer. Moving forward, I hope to share more of both sides of our life so that you can fully grasp the scope of what He’s doing in and through our lives. As always, thank you for being a part of the Walking with Grace family!