¡495 Pages in Spanish!

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Long-term memory for the win!

 

It’s a little-known fact that I studied Spanish Literary Translation  along with violin performance during my time in New York. Violin was obviously the reason I went to Rochester, but literature has always been my second love – and Spanish, my third. It made sense to start working on a translation certificate as a side gig since musicians are famous for needing the occasional financial “pick me up”.

It’s a better-known fact that I have a severe traumatic injury (TBI). I have residual deficits, but significantly fewer than predicted. My lingual abilities should be reduced,  so I’ve consistently surprised doctors by testing much higher than a normal level for grad students my age.

So what have I been doing during my six months of solitude? Reading. Reading a lot. In addition to all my English reading ( ❤ ❤ ❤ ), I decided it might be fun to check on  my Spanish skills. Ivan (always the attentive husband) caught on to my curiosity and surprised me with a copy of Cien Años de Soledad, the Nobel Prize-winning novel by Gabriel García Márquez. (The title translates as “100 Years of Solitude”.) I’d enjoyed this novel – in English – as a college freshman,  but it was my first attempt in the original Spanish. Also, I’d forgotten much of the plot, so the probability of reading via cheating was low. Guess what? Good ole’ long-term memory kicked in, and I just finished it yesterday. Oh, and it was 495 pages long. Some honest disclaimers: 1) it took me 2.5 months (slow for me) and 2) it turned into half reading “normally” and half translating (my Spanish skills are way rustier than they were 5 years ago!).

It’s an entirely unknown fact that I woke up from the accident unable to read at all. I remember one morning when I glanced around my hospital room  and was startled both that I could read again and also that I’d been unaware  I couldn’t read before. Until that moment I’d taken for granted that all those signs and labels around me were filled with jumbled, meaningless letters. I was too groggy to remember those letters actually meant something to everyone else, and too groggy to care they meant nothing to me.  Then, one morning I woke up and suddenly realized all those letters made words – words I understood. “Huh,” I thought. “I guess I couldn’t read before.” I was still too groggy to think it was a big deal and I forgot to tell anyone what had happened. Friends and family (unaware of the situation) brought me some books to read in the hospital, but it was still too much brain work to make it through even one page. I quickly gave up trying.  To go from struggling with a page of my native language to reading an entire,  complex novel in a second language is a giant gift from the Lord. I still can’t believe how much He continues to bless my recovery!

Now, to work on those speaking skills…

PS. In case you’re wondering, the title “100 years of solitude” is ironic only by accident. I don’t compare my current semi-solitude with 100 years of solitude in any way 😉

PPS. We’ll be sure to keep sharing seizure updates as they develop.

To Mom, With Love

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I’m not the only one she mothers!

No matter how much I write about Mom, I hope you realize this is only a teaspoon of what she deserves. In fact, her sacrifices could probably take up a whole blog of their own, but since she’s not a blogger (and would definitely NOT spend time posting about her own activities), my attempt will have to do.

You probably know the beginning of our story: Mom and Dad bartered for plane tickets as soon as they got a vague phone call about my accident, even though they thought I “only” had a concussion and two broken legs. Some parents might have waited to get the final prognosis, or at least settled for a flight the following day since it didn’t sound life threatening, but not mine. Mom and Dad rushed down so they could support me that very same day. Their urgency was God-given since by the time they made it to SoCal I was on life support in the ICU.

Even so, Mom couldn’t have known that flight marked the temporary end of her comfy life in San Jose…or the beginning of her calling to live apart from her husband and church for the next five months. That’s one thing I can say about Mom. From my earliest memories, she was always a devoted caregiver. She knew how to make the worst sicknesses (think chicken pox, countless flus, plus two eye surgeries) as comfortable as possible. Mom’s best medicines were extra yummy foods and fun games…medicines which always worked! Our family vacations were devoted to helping out my grandparents as they aged. I didn’t enjoy that very much as a kid who just wanted to have fun, but looking back I see a beautiful picture of Mom’s heart. I also have to give a shout out to my Dad, who was a great supporter of her desire to help.

In spite of her caregiver talents Mom is disturbed by grosser mishaps like broken bones or open wounds, so my trauma presented a significant challenge. But God filled her with extraordinary abilities as she faced extraordinary need. Mom accepted my skull fracture, half bald head, disgusting leg incisions, and infected G tube site with almost miraculous grace. I’m sure she was entirely grossed out on the inside, but she suppressed it so well that I never saw even a hint. (Side note – Ivan dealt with the most nitty-gritty wound cleaning when he got home at night, but she still had to deal with – and look at – all my problems when he was gone).

Mom’s superpowers are even more amazing because she had almost no emotional support or “me time” for 5 months. While Ivan and I were extremely grateful for her soothing presence, he was gone almost all the time working and I was the cause of all her stress. I was definitely not the outlet for relieving it. True, she got to call Dad around once a day and Anna stopped by whenever she could, but I doubt that scratched the surface of what Mom needed. Oh – she couldn’t even go to church because Ivan worked at one on Sundays and it was unsafe for me to be alone.

Fast-forward to San Jose. Mom finally reunited with Dad (hurray!!!), but her caregiver job was far from over. She and I embarked on a second voyage of doctor’s appointments and therapy visits, plus the additional challenge of seizure management and more hospitalization. While Dad and Ivan took care of as much as they could, full-time jobs obviously limited what they could do. Mom picked up the slack with the same brave commitment that she’d always shown.

To say “thank you” is not enough. In fact, my best “Thank you for ___” is a run-on sentence since she’s still working for and with us every week. One thing has changed, though. Mom is finally doing something for herself after 25 years. She was a successful accountant before I was born but gave up her career to raise her children. What was not part of the plan was her oldest child’s return to needing full-time care before her younger one finished college. However, after much thought and prayer, Mom’s accepted an opportunity to return to her field – albeit part time. She still checks on me every day and devotes extended periods to helping me on her days off. But I’m delighted to watch her begin investing in her own interests again. I love you, Mom.

 

Latest Seizure News + A Week in the Life

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Heading home from a church visit…and yay SPRING!

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!

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I hear he’s incredible at teaching, too! 🙂

“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 23rd 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.

Still Okay..

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I have no idea what the total number of cards received is, but THANK YOU! ❤

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.

Let’s Hear It for the Girl!

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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 3rd 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!

Patience is a Virtue

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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!

Ready for some good news?

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I’ve looked at this frame a lot recently!

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!

 

The Happy Choice

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Anna and cats make me happy, 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.

Fighting Seizures

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No magic ring is involved…

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.