Walking With Grace

It’s fitting to start a new week with a new update. Y’all are more than due one – especially with all the amazing love and prayers we receive every single week! I wear a big smile as I write this. That smile is because this post is even more positive than the last (kinda) positive update we shared. All those little changes I referenced last time continue multiplying. We’re increasing my medication every two weeks (that’s how long it takes for a dose to kick in), but with each increase comes an increase in ability. This increase in ability might be something as simple as not freaking out every time my Instagram generates an unexpected flashing ad or going for a daytime car ride without an over-anxious driver (yay Mom, Dad, and Ivan!). The doctors request that a family member take me on short outings to test each new dose. My safety level at home is generally stable, so they can only know how much work still needs to be done by pushing the boundaries outside. Honestly, I hate the possibility of having a seizure in public (yes it happens and yes it’s embarrassing).  Nevertheless, if that’s what it takes to keep getting better then I’m sticking with the program. The heightened activity level also reminded us that I do still have the attending symptoms of my traumatic brain injury, so we include those factors in choosing appropriate outings, too.

Here’s a  “week in the life” snapshot, created just for you 🙂

• High: Going to church is a Sunday morning option again
• Low: The most recent church visit was unsuccessful, plus I skipped all Easter services to avoid extra crowds and noise
• High: Mom and I might make a brief coffee run (think mostly to-go orders)
• Low: My recent attempt at going to a new restaurant lasted only 7 minutes before I had to leave (this was actually TBI related)
• High: I can watch some TV shows again
• Low: Ivan throws a pillow in front of my face if there’s a scene with a lot of light; also TV commercials are a giant NO
• High: I can take brief walks in our quiet neighborhood (daytime only)
• Low: Stores are pretty much off-limits

Hopefully this gives y’all an accurate picture of our current life. To end with a Chronicles of Narnia quote: “Further up and further in!” 🙂

“I” is for incredible and Ivan, and Ivan is the next stop on my “family tribute” series. There’s already a much-abridged summary of things he faced in Year One (if you missed it you can check it out here.) Tomorrow is the last day of his first Spring Break at VCS, and I’m beyond proud of how he’s managing a full-time teaching load (junior high and high school!), while facing our rollercoaster home life with courage and grace. To slightly alter a Taylor Swift lyric: “We don’t love the drama but the drama loves us!”. Instead of dashing off a generic “Day in the Life of Ivan Utomo” post, I’d rather draw you all a concept picture of why he’s the greatest guy in the entire world (from my perspective! <3)

“I” is also for integrity – which Ivan has in spades. He chose me on the deepest level that day he proposed in Golden Gate Park (San Francisco – for those who were wondering!). Since our wedding took place only days after his 23^rd birthday and I was still 22, you can imagine the number of raised eyebrows. We said we wanted to be together forever, but just words won’t make dreams come true. How could we make that kind of permanent commitment so young? Our choice was founded on God’s help as well as our own love, though, and a fairly decent “starter life” didn’t hurt. I was headed for grad school and Ivan was finishing grad school. We understood each other’s fields and were enthusiastic for each other’s opportunities. We could support ourselves financially. But then the accident. Ivan had a disabled, brain-injured wife and he was still only 23. We had our first anniversary in the hospital.

This would have been a prime time for anyone to rethink his “I do”. Ivan was (and is!) extremely gifted and his whole life was still ahead of him. I was his only obstacle. Honestly, we lost track of the number of people who asked if he would stay, especially during those early months. But one of the qualities that made me fall in love with Ivan is his integrity. He had promised God we would be together forever just like he’d promised me, and he kept his word. He faced more than just living with me, though. The Bible calls a Christian husband to protect his wife and provide for her. Since we were both employed and enjoyed a stable lifestyle when we got married, that didn’t seem like such a big deal. It was more like a “be nice to Grace and keep her safe” kind of deal. But then we lost everything and it turned into a “take care of a disabled girl, pay the rent, put food on the table, finish grad school, and find a full-time job” kind of deal. “Overwhelming” is an understatement. Do you know I’ve never heard Ivan complain about that deal during our journey, not even once? He’s 25 now, his face looks more tired than it did, but he carries himself much taller. I’m pretty sure his integrity is taller, too. Ivan trusted God, and God is sculpting him into a much stronger man than I could have imagined. I admit we still have a super long way to go before a lifetime is over, but I’m positive he’ll be incredible every step of the way.

Last January I remember getting a card from a little boy at Hillside. Besides a cute drawing, the only message on the inside was: “Dear Grace, I hope you are okay. Are you okay?” The card was hilariously cute and sweet…you can tell since I remember it over a year later in spite of TBI! But the kid actually had a good question.

Accidents produce trauma. Trauma – especially extreme trauma – can produce mental and emotional disorders. There is absolutely nothing wrong with this and I stand in full support of anyone who suffers these, as well as anything that offers them healing. On the flip side, though, it is possible to end up okay. Way back in the rehab hospital, both Ivan and I were interviewed by a psychiatrist to screen for developing mental health disorders. We tested as normal. Over the past year and a half there have been several other doctors who ordered psychiatric testing because they didn’t think it was possible to stay mentally healthy in the face of everything we’ve gone through. Ivan got some questions along the way, too. Although a healing TBI  changes my mood and mental processing to an extent, in the big picture I still screened negative for PTSD and its co-morbidities. Since I’ve  turned out “okay” my treatment team is confronted with the unsettling reality that science can’t explain everything about how I function. That’s because my mental wellness is based on something greater than the physiological.  Both Ivan and I believe that God will always be faithful to us. True, we can’t explain why the accident happened, but we know God has a plan…and that at the end we’ll finally understand how and why it was good. This is why we can be peaceful and even happy.  I was listening through the songs below this morning and got super inspired to write a new post (I am a musician, you know). Even if you’re not a Christian, feel free to explore and see the world through our eyes for a couple of minutes. It’s refreshing to hear a different voice capture the essence of what keeps us going.

Any real relationship is raw and weird sometimes – even a relationship with God. Catastrophe highlights the raw side, but we trust our questions won’t last forever

That is why we can trust our questions won’t last forever.

Here is our guaranteed happy ending. (Yes, the song was written after the artist heard our story, but we’re so grateful it’s sung for far more people than we could ever talk with.)

The happy ending is why we’re okay.

The journey we’ve shared with you for the past 15 months is about more than just me and Ivan. It’s about my (blog-shy) family as well. I hope to spotlight all of them in the near future, but Anna is the first one to give me the green light. 😉

The best place to start is her age. Anna was only 20 when the accident happened, right in the middle of her junior year of undergrad. Her dedication was paying off already – she planned to graduate early in spite of majoring in applied statistics (with an emphasis in biology). My only explanation for her crazy degree is that she’s super smart and super okay with studying all day, every day. These details lay a decent foundation for her side of the story, so let’s skip to the exciting parts.

December 3^rd could not have come at a worse time for Anna. Her finals were scheduled for the following couple of weeks, and they were pretty intimidating. I think one was in microbiology. While the faculty at CBU were extremely sympathetic both to our tragedy and all the lectures she needed to skip, the best advice they offered was to withdraw from the semester and start again in the spring. From their perspective, such a talented student shouldn’t hazard any bad grades on her transcript – especially since Anna was headed for grad school. Their opinion made sense for most student types, except that Anna isn’t like most students. She’s stubborn as well as intelligent. Instead of withdrawing, she carved out time to study in the ICU, in her portion of midnight vigils, and in various neurological and step-down units. She made straight A’s.

Anna’s degree didn’t get any easier in the spring semester, but somehow she managed to visit almost every day while we lived in Riverside (our apartment was close to her school). We incurred an unfortunate number of urgent care runs in February and Anna made it to Kaiser for all of them (laptop in tow). As I grew stronger she took me on short outings like haircuts and ice cream runs. Wrangling a wheel chair didn’t bother her, and she also wasn’t afraid to supervise a walker or cane once I was strong enough to walk. Somehow she did well on her spring finals too.

The summer flew by since Anna was given a full-time, high intensity statistics internship, but at least we both lived in San Jose at that point. She was there for me as often as possible in spite of an unfamiliar and demanding work environment. Her return to Riverside in the fall was bittersweet, but I knew Anna was excited to finish her degree. Apparently it wasn’t enough just to be a student, though. She kept up with her summer job remotely, this time as a real contractor instead of as a student intern. She graduated in December magna cum laude – and yes, she did it a semester early after all.

Anna’s success story doesn’t even end there. She started as a full time-time analyst for a major healthcare entity last Monday, and still plans to apply for grad school this fall. Pretty impressive for a 21 year-old, don’t you think? She’s probably a little embarrassed by this post and would definitely tell you all these blessings are gifts from God. I agree with her, but I still think it takes an amazing individual to overcome devastating odds and succeed at both school and work – all while putting God and her family first. Thank you, Anna!

Hi everyone! Time for a weekly update…from a medical perspective, we’re still trying to find the optimal dosage level that will be strong enough to resist seizure triggers. In the past few weeks we’ve seen a drop in the number of Grace’s seizures, so we believe we’re on the right track. But realistically, it will probably still be weeks (if not longer) before we reach that optimal level.

It’s always hard to wait for something you really want, especially if in the meantime you feel weighed down by a giant burden. But God grants the grace and ability to “wait patiently,” as David testified in Psalm 40:1, when he said, “I waited patiently for the Lord, and He turned to me and heard my cry for help.”

God is present in the waiting, and will accomplish all things for the best, in His time. Grace and I are also so encouraged and grateful to know that we have so many friends and family members praying for us every day! We can’t thank you all enough for that. You are our “cloud of witnesses,” faithfully lifting us up in prayer. Thank you all for waiting with us!

Hi everyone! I sure am happy to be talking about some seizure progress…finally! We do need to back up a teeny bit, though. Two weeks ago we had another in-person follow up with my neurologist. This was in the thick of our extreme “37 seizures in two weeks” period. We drove to Redwood City yet again, praying that he’d have some sort of instant solution for us. It unnerved us to find him confused by my extreme seizure episodes, too. The unsatisfactory appointment ended with yet another medication increase – and an ultimatum. He needed to see measurable progress within the next 7 days; if that didn’t happen he thought it unlikely that medicine would help me. (For  a reference point, I usually get at least 2 weeks after a medication change before he evaluates my progress).

No one wants to leave the hospital with the words “In thirty years of practice I’ve never seen anyone as confusing as you” still ringing in their ears. Yikes.

That day confronted Ivan and me with a level of inadequateness as we faced my giant need.  I’ve experienced a lot of terrible things, but I think a confused doctor unsettles me far more than the worst physical pain. It’s human nature to need to know everything will be okay. Ivan and I had tried, my family had tried – the doctor I trusted was trying, too – but we still had no “okay” guarantee. God was literally the only One who could make things right. Correction – God is always the One who makes things right, but He typically uses an obvious human vessel, and often a clear sense of direction. In the absence of both of those, blind trust and waiting were the only options. Did I mention I hate waiting?

At least this time the wait was fruitful.  After a couple of days we noticed my seizures were adjusting – just what we’d been praying for! True, the changes were small at first, but we weren’t picky. Those small changes started adding up. By the time they checked the medicine level in my blood last Friday, we had more progress to report to the doctor than I had even thought to pray for. The numbers from the blood test confirmed my personal experience.

So what now? My medication level isn’t perfect yet, and I am definitely still having seizures. But now they follow a more normal seizure pattern, and don’t come in extremely high numbers. I’m much happier. It sounds like my doctor is, too. Although the pathway to reintegrating into the outside world is long and conservative, a conservative pathway is loads better than no pathway at all. Thank you for your prayers, and stay tuned! 🙂

PS…The photo at the top was a goodbye present from my physical therapist in Riverside. It was definitely true for broken bones, but I think it works for brains too!

“Are you really sure you’re happy? Most people would be angry, you know.” This question has been posed countless times in the past 14 months. Most recently it came up in a neurology meeting (it is their job to figure out exactly why my brain does what is does, after all). My answer – yes I am actually happy – surprises almost everyone. Before you read any further though, I do owe one contextual clarification: For me, “happy” means “joyful”. It doesn’t have to be a 24/7 elated feeling, but it is an outlook that’s available to me every day. It’s based on my belief in God. The past few weeks have been pretty rough on all of us (if you need a recap, check out Ivan’s post), but I would still call joy – happiness, if you will – my chosen outlook. Even after I explain this, though, it can be difficult to believe I’m actually telling the truth. Here’s why I am.

Any outlook is a choice. I don’t operate the way I do just by accident, and I can’t stay on track without a whole lot of effort. I’m required to look beyond how I feel to something larger than myself. But before we get to that big picture, here’s how I explain my life to myself on a daily basis: I could have…but didn’t. This sounds vague at best and possibly negative at worst, so here are a few specific examples:

• I should have died, but didn’t
• I could be unable to use my left hand, but it works surprisingly well
• I should have giant mental deficits, but I don’t
• My family could have been unwilling or unable (then and now) to invest so much toward helping me get better, but they weren’t
• Ivan could still be job hunting, but he’s not
• I could still be stuck on the waiting list for a seizure specialist, but I’m not
• I could still be in several therapy regimens, but I graduated from every single one of them

It’s hard to be angry when I count all the terrible things that didn’t happen to me. So many people don’t beat the debilitating odds against them at all. So many people beat them far better than I have but receive far less attention and support. I’ve been given so very much.

Notwithstanding, I’m sure some of you did spot a pitfall in my outlook strategy: it works fantastically well the opposite way, too. “I could be almost done with grad school, but I’m not”; “I could be out making friends and having fun in our new city, but I’m not”; “I could be teaching violin and freelancing, but I’m not”…

This is where the choice part comes in. I simply cannot afford to choose the dark side. True, I’ve had moments when anger and bitterness would have felt so much better than fighting for happiness. I’ve had moments when I just wanted to give in. BUT I knew if I made a habit of going there I’d eventually lose everything: my will to get better, my beautiful relationship with my husband, my appreciation for my family … Most of all, I would risk losing my reverence for God. If I didn’t appreciate life as only His to give or take away, it would be easy to forget that my life is a gift. It would be easy to complain that living takes too much work. It would be easy to say that any type of painful life is a mistake. But if life is truly from God, I would hate to see Him face-to-face at the end if I’d called His gift a mistake. A present is meant to be used, not thrown away. God gives gifts, and He never gives them poorly.

So yes. I am actually happy.

Hi all, long time no see! Thanks as always for your continued love, prayers, and support. Since VCS had the week off, I thought I’d write a bit this time. Grace and I are still battling her seizures. We are continuing to work with her doctor to find a medication that’s a good fit and will prevent these seizures from happening. Just as a reference point, Grace has had 37 seizures in the past two weeks. She’s starting to experience severe muscle pain in her neck and shoulders from all the tension her body sustains during her seizures. She’s still essentially house-bound, as it is far too risky to venture out and have seven back-to-back seizures (or more).

To continue the war analogy, we are still in the trenches. It’s hard to tell when we’ll negotiate a “peace treaty,” but we sure hope we’ll be able to do that soon. As Grace’s husband, it is agonizing for me to sit and watch her when she’s having these seizures, because I am powerless to stop them from happening. It’s even harder to watch her battle to keep moving forward one day at a time, with no guarantee of when this will end.

But it is in times like these that we cling to God. The darker the trial, the more brightly His grace shines. The heavier the burden, the more deeply felt is His presence and sustenance.

We all need oxygen to breathe, and most of us do so without giving a second thought. But it’s not until someone is reliant on a respirator to stay alive that every breath is recognized as a precious gift. So it is with God’s grace. We are lost without it, and most of us fall very short of thanking God for lavishing it on us daily. But perhaps when life hits us hard, our eyes are opened and we are presented with the opportunity to thank Him for His love. When we give thanks, we experience God’s love more richly.

“Therefore we do not give up. Even though our outer person is being destroyed, our inner person is being renewed day by day. For our momentary light affliction is producing for us an absolutely incomparable eternal weight of glory. So we do not focus on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.” (2 Corinthians 4:16-18)

Earthly trials sure don’t seem “light” and “momentary” while we go through them, but eternity is a very, very long time…thank God for inviting us to be with Him during all that time! To Him be all the glory and honor, because He deserves it.

I try really hard not to say those words but I caved this morning. Why? For starters, I’m taking the most neuro medication I’ve been on to date. I have an extra “rescue drug” in case that doesn’t work. Next, going outside requires ear plugs, neurologist-selected sunglasses, and often a transport chair (hopefully this explains why I don’t attempt that often! 😉 ) Finally, I keep the lights in my apartment turned off or dimmed much of the time. Real TV almost never happens, but when it does it’s low-def and I’m wearing those fancy sunglasses. Last night we finally got up the courage to watch Beauty and the Beast (pretty harmless, right?). Lights in the movie triggered seven back-to-back seizures, which only stopped after Ivan gave me the rescue drug. Hopefully this gives some context to my grumpy attitude this morning.

That’s an extreme example, but I know I’m not the only one of us who wakes up on the wrong side of the bed (or goes to bed on the wrong side, for that matter). I’m also not the only one who feels that predicament is justifiable. “End of rope reached” is a box I would check in a heartbeat if life offered me one. There’s only so much a person should be expected to take, right? I wish we could all check that box – or at least stretch our ropes a little farther so we wouldn’t need to. The box doesn’t exist, but the end of every rope does. What happens if I’m right and I have finally hit the end of mine?

To move this story away to someone NOT me, let’s talk about a man named Joseph. His own brothers sold him into slavery when he was a teenager (this isn’t a current story, FYI). Most people’s ropes would have ended right there. Not Joseph’s, though. Instead of giving up, he worked hard and became the overseer of his master’s estate. Finally, happy ending! Except it wasn’t. His master’s wife tried to seduce him but Joseph refused. Instead of being rewarded for his faithful choice, he got thrown in jail because the woman told her husband Joseph had tried to rape her. Another plausible “end of rope” moment. But Joseph pushed through. His faithfulness and wisdom were noticed even in prison, and he rose to be overseer yet again. (True, freedom would have been better, but “manager” is a step up from being locked in a cell).  His innocence, faithfulness, and wisdom eventually reached the ears of the king. Not only was he finally freed – he became manager of the entire kingdom! This would also be a great end to Joseph’s story, except that it still wasn’t. He had one more piece of “rope” ahead of him. A few years into his kingdom-managing gig, guess who arrived at his doorstep? His brothers. There was a famine in the area, and although Joseph had saved up enough food for his new homeland, the surrounding kingdoms hadn’t prepared so well. Now could have been Joseph’s ultimate moment of triumph. Those men had hurt him so much – directly and indirectly. They definitely did NOT deserve the bread they were begging him for. Saying no would have been so easy. But instead of calling it the end of his rope and enjoying their rightful demise, Joseph actually gave them what they were pleading for. He also told them he forgave them – even though they hadn’t apologized. Offering unsolicited forgiveness is the ultimate “end of rope” moment for anyone to survive.

How in the world did Joseph find such inner peace and strength? He looked beyond himself to see a larger picture. In Joseph’s own words, “You intended to harm me, but God intended it all for good. He brought me to this position so I could save the lives of many people.” If his brothers hadn’t hurt him so long ago, he wouldn’t have had the privilege to protect so many. The hard part was that in the thick of his troubles Joseph couldn’t see how far his rope would keep stretching before any good came of it – and neither can we. We can, however, choose to remember that God never ever wastes pain. We can’t fast forward to the good part, but we can believe He does have a good part. And that He will never leave us with a longer rope than we can handle.

So I guess I can’t arbitrarily decide when I hit the end of my rope. Like the story above, not all of my rope is even that bad. (I say that as I sit here finishing up this post with a fluffy kitten and my sweet husband.) God already stretched my rope beyond what I thought possible, and I suspect He’ll continue stretching it for many years to come. In the meantime, I know His plan is good and His end is kind.

Also, brownie points if you guessed I was paraphrasing the story of Joseph from the book of Genesis!

Also also, even more brownie points if you caught that “Bare Necessities” is a song from The Jungle Book. 🙂

Hi everyone! A music update is long overdue, so here we go. My left hand sensation is permanently lost. At first I didn’t want to believe this, but time and several different neurologists confirmed the pronouncement. It would have been easy to give up on my violin journey at this point. After all, the violin is primarily a left handed instrument, and a highly toned sense of touch produces almost all of what great violinists are known for (fast fingers, excellent intonation, and rich vibrato).

After doing some research I believe I’m the only person who’s ever tried to play the instrument without feeling their left hand (FYI, I’m happy to be corrected if this is mistaken! 🙂 ) BUT I’ve had too many outstanding teachers and mentors to believe it’s impossible. You see, great music is born out of a specific combination: passion and problem solving. Passion gives the insatiable desire to project deep emotion to an audience, the bravery to overcome anxiety – and the commitment to devote hours, days, years, and lifetimes to be expert enough to succeed. However, just passion is not enough. Expertise requires a whole lot of problem solving, too. Problem solving corrects poor intonation, wrong hand positions, mistaken interpretation of pieces, and unbalanced sound levels in a concert hall. While there will never be a perfect musician, a truly excellent one has a rare combination of extreme passion and intelligent problem solving.

So, back to me and the violin. To give y’all some background, I want to share a classroom performance during my time at the Eastman School of Music. This is truly an amazing music school, and I studied under a man who shaped aspects of my life far beyond just music. Although no performance is perfect, I really enjoyed combining passion and problem solving in this one:

After the accident, passion drove me to repair my violin (it got hit by that car too!) even though I couldn’t hold it correctly and wasn’t sure if I ever would. Side promo for Benning Violins in Los Angeles! They service the LA Philharmonic and are absolutely fantastic.

After my violin was fixed, passion drove me to keep trying until I could hold the instrument correctly, then get my fingers on those strings, then get them to the right intervals for some notes. All without feeling anything. (Also, just a reminder, the violin has no frets). You would think I could use some serious eye work to accomplish this, but here’s where the hard core problem solving comes in. Not only does the bow partially block my line of vision, but I also have some visuospatial deficits from the accident. Ivan compares all this to trying to throw darts blindfolded. The past year was a cycle of experimenting, experimenting, and experimenting again. Most of this ended in tears. There were moments I was so depressed I swore I would never touch the instrument again. But passion drove me back very single time. Eventually I produced this:

To give some perspective, I think I originally learned this when I was 6, so it’s basically violin preschool. I was too embarrassed to perform it live, but at least I recorded it…and FINALLY am posting it…over three months later.

Passion drives me back to the violin every time, no matter how I end up feeling, and problem solving is finally showing a few results. I don’t know if problem solving will ever produce a technical foundation solid enough to project the strong emotion I once loved sharing, but at least it’s producing enough to keep my heart happy. Thank you all for your prayers!