Hi everyone! First off, I want to say thank you SO much for all the extra love, prayers, and support you’ve poured out on us during the last 3+ weeks! It continues to amaze and humble me each time God reminds me just how powerfully His love can work through our friends and family.
I’d originally hoped to have recovery progress, or a treatment plan, or a timeline (preferably all three!) to share with this post, but unfortunately those are yet to come. In the meantime I’m grateful for how much “overtime” Ivan and my parents are putting in to take care of medical/insurance logistics and to keep me safe at home. Talk about “laying up treasure in Heaven!”
This morning I revisited a story about Jesus healing a man who was lame. (It’s in John 5 if you want to check it out!) The story begins with Jesus seeing a lame man and asking him ” Would you like to get well?” I’ve always thought this was an odd way to start a conversation with a disabled person. Is there anyone on earth who would really answer “No thanks…I’m really quite happy being [insert debilitating ailment].” But this most recent experience is helping me understand Jesus’ question better.
I’ve always wanted to get better, and I’ve always had a perception of what that would (or at least should) entail. This most recent setback was absolutely 100% not on my list, and I find myself asking “God, when is it going to be enough already? Wasn’t it hard enough with the old seizure lifestyle?” It’s funny how that “old” seizure lifestyle is starting to look pretty great compared to the new one.
My family has been solid enough to remind me that this disappointing downturn looks to be God’s way of pointing me towards new specialists at a new facility…and therefore toward a new chance to get well. God makes no pointless decisions, but I do have to decide how open I am to His way of getting well. His way is certainly not my way right now, and I don’t know what His final version of “well” will be for me. What I do know is that I need to wake up each morning and try to answer Jesus’ question with a “yes,” even if His way of getting well involves yet another trial that I don’t want for myself or my family.
Yes, I do really want to get well. Yes, Jesus already knows what His perfect version of “well” will look like.
And in the meantime, there’s always The Princess Bride…
On January 24 something very unexpected happened. For the past year or so Grace’s seizures have looked the same: light trigger, left hand comes up, body freezes, then the seizure releases after a few (or more) minutes. However, last Thursday morning while I was at work Grace had a “normal” seizure which then abruptly morphed into something we hadn’t seen before. Her whole body went limp and she struggled to breathe. Paramedics rushed her to the ER where, after several tests, doctors concluded that she had had some sort of rare but not-to-be-unexpected brain flare up. Monitors showed that although outwardly Grace looked like she was struggling to breathe, her brain was still receiving enough oxygen in between gasps. They told us we shouldn’t worry, and she was released later that day.
Last Saturday morning Grace had another of her “new” seizures, but having been reassured by doctors two days before, we kept her at home and she rested afterward. Later that night, however, another seizure came, and this time Grace looked like she was struggling for air even more than before. We called 911 for the second time in three days, and the paramedics once again brought her to the Kaiser Santa Teresa ER near our apartment. It was around 7pm.
Eventually doctors decided that Grace should be transferred for an inpatient EEG monitoring, but since Kaiser Redwood City was full, she was transferred to Stanford Medical Center instead. The ambulance didn’t come to get her until 2:30am, and between the ride over and getting checked in Grace only “slept” from 4-6am that night. By now she had had several more of the new kind of seizure.
The EEG ran throughout Sunday morning, during which time Grace agreed to have a seizure purposefully induced via a doctor shining a light in her eyes. By Sunday afternoon the doctors informed us that the EEG results were inconclusive, and they recommended further outpatient treatment at a Stanford center specializing in neurological disorders.
Grace went home that afternoon and has been at home this past week. We are doing our best to resume our normal daily routines while dealing with the seizures as they come. I have tried to share this update with you all as concisely as possible, with the understanding that as a whole this past week-and-a-half has been unexpected, scary, and tiring.
At this point we are waiting to finalize our referral process to the Stanford center, hoping for little or no exposure to light triggers so that Grace can at least rest and resume her daily routine as safely as possible. Thank you so much for your prayers for us, and we will keep you posted as we learn more! God is faithful and good through it all.
Ivan is a ninja. He enters and exits my parents’ condo undetected. Mom once checked out behind him at Costco without spotting him. He’s pushed, pulled, lifted, dragged, and (insert any other word for “toted”) me in and out of various locations without attracting so much as a startled glance.
Ivan revealed his ninja nature quite some time ago – Thanksgiving 2017, in fact. Some of you would remember the initial seizure saga reached a crisis around that time. None of you would remember that Ivan picked up an apple pie and brought it (and me) to my parents’ house for dinner that Thanksgiving. Apparently dinner went well, but our five minute drive back from my parents’ condo to our apartment complex did not. Most of that night is fuzzy (I was fading in and out of awareness between seizures), but I have one very high-definition snapshot of Ivan pinning me to a concrete wall with his left hand to keep me from falling. He was holding that pie high above his head with his right. Somehow (I have no idea how) he got me down a flight of stairs, across the complex driveway, through a hallway, and into our apartment…in between my full-body seizures. He never dropped the pie.
It’s January 2019, and Ivan is still a ninja. When asked if he wanted me to include his feats of stealth in my last post, he opted for silence. “Maybe later…” he conceded.
Well, it’s later.
If y’all remember, we hit the road to Itzhak Perlman after I’d had five seizures and taken a rescue drug. “Hitting the road” entailed Ivan wrangling me, my wheelchair, our sandwich-bag supper, a latte, and a Frappuccino into our tiny blue Yaris. Nothing was spilled, nothing (including me) was dropped, and no cars were harmed in the making of that production. Once installed, I sat for most of the drive with my eyes closed to avoid more light triggers. This required some expert driving on Ivan’s part so I wouldn’t get motion sick from the starts, stops, and bumps that come with a Bay Area rush hour. Upon arriving in downtown San Francisco, Ivan prowled for the unicorn parking spot that was wheelchair friendly, near the concert hall, and unlikely to attract unsavory attention – a tall order given SF’s parking reputation. Somehow he snagged a handicap spot that was curbside to the front doors at Davies’ Symphony Hall.
But this ninja’s mission was far from over. Ivan stood next to my wheelchair for almost two hours just waiting for the doors to open. He haggled with ushers to prove that we had indeed purchased ADA seats, that no I couldn’t abandon the wheelchair and navigate a staircase in the dark, and that yes I would most likely need direct access to leave the hall during the performance (my brain is still easily overstimulated by noise). Ivan is possibly the most non-confrontational person I have ever met, but somehow he got exactly what he wanted from a potpourri of ushers in a potpourri of moods. He even talked one into clearing out a ladies’ room since I was too unsteady to go wandering through a crowded, tile-floored bathroom on my own.
The ultimate ninja test was yet to come, however. As the usher deposited us near Mr. Perlman’s green room, both Ivan and I spotted a giant problem. Stairs. The green room was up a flight of stairs. Unfortunately this particular usher felt his civic duty was complete, and so he retreated back from whence he came…without any parting words of staircase wisdom. Silently, Ivan leaned me up against a wall with his left hand, raised my wheel chair high above his head with his right, vanished, and was back again before I had time to process. I couldn’t place its source at that time, but I suddenly had a strong sense of deja vu. Where has he done this before?? It was the pie. Ivan did it during the pie incident. Unfortunately for Ivan’s sweet tooth, this time involved a wheelchair instead of baked goods. Mr. Perlman must’ve been a decent recompense for the absence of pie, however, since Ivan whisked me up the offending staircase and into my wheelchair in record time. It has since occurred to me that whisking someone who wobbles is scientifically impossible. Nevertheless, Ivan whisked.
Ivan, Mom, Dad, Anna – all four work overtime to keep me up and running every week. All four say they rely on the grace of God. All four are also fastidiously low-profile, and none better than the resident ninja. But sometimes, ladies and gentlemen…sometimes even ninjas get spotted. 😉
Yes, this is Itzhak Perlman. This is also me and Ivan. This photo is less than twenty-four hours old.
This is one of the hardest posts I’ve ever written. Writing involves staring at my right hand and not at the picture above, you see.
You might remember my post last May about our pilgrimage to hear Mr. Perlman in concert – the consummation of 15 years of my trying to find a performance that was 1) in my area and 2) not too expensive. Our trip last spring verged on medically disastrous, but we did it nonetheless. Seeing him onstage was probably my finest post-accident moment.
That blog post on Itzhak Perlman found its way to…Itzhak Perlman. Hence the photo last night.
Mr. Perlman was in the Bay Area again last night for a concert experience called In the Fiddler’s House. The program celebrated music from several Jewish traditions, performed by the legend himself with a cohort of traditional instrumentalists and singers. Some email conflab with “the powers that be” established that if I could successfully attend the concert, I could also successfully meet my violin idol afterwards.
[Side note: If concert-going were still attainable – which it supposedly is not! – the program’s rich cultural offering would have tempted me to attend, even sans incentive. We embarked on a musical tour from centuries-old eastern European wedding music to more current Shabbat and/or Hasidic melodies. Apologies to all who are familiar with this music and might be laughing at my botched description! ;)]
Every journey has its beginning, so I will now rewind to yesterday morning at 10am. Ivan and I had “perfectly” engineered my activities so I wouldn’t get triggered before we hit the road at 3:45pm. Driving on the freeway is enough of a seizure death trap as it is. Apparently Murphy’s Law did not get that memo, because one of our apartment lights flickered a bit before noon and sent me into a decently bad seizure cycle. One rescue drug later found me dozing in bed while Mom played babysitter/nurse. Those pills knock me out for at least a couple of hours, and often irritate my brain for the rest of the day. We were past the point of no return as far as Mr. Perlman was concerned, however, so Ivan still rolled me out to the car and the car still rolled out into the rain at 3:45 as planned.
Somehow we made it into San Francisco without further incident. I may or may not have been blindfolded to cut out all light triggers, but a girl’s gotta do what a girl’s gotta do. I also may or may not have consumed a cappuccino at lunch and then a latte on the road, but who’s counting espresso shots? A girl’s gotta do what a girl’s gotta do. Caffeine staves off the TBI symptoms that are inevitable after seizures and/or a rescue drug. We pulled in front of Davies Concert Hall excessively early, but we desperately needed that curbside handicap space. A girl’s gotta do…you get the picture. Ivan rolled me into the lobby and I tried to doze with my eyes covered and my noise-canceling earbuds in place until the doors opened at 7pm.
The open doors revealed a contingency we had not counted on: our ADA spots (read wheelchair space next to caregiver seat) had been double-booked. My internal moan turned into an internal smirk since…guess who got installed in a box in the orchestra section instead? Ladies and gentlemen, I’d assumed that any exclusive seating area was not in the cards for me…ever…much less a box! Not a bad trade.
Labeling last night as “concert of a lifetime” is no overstatement. At one point, some (read “mostly all”) those in the main floor seating area got swept up by a medley of traditional wedding music and started dancing in the aisles. I kept my eyes shut for most of the concert because of possible light triggers, but Ivan says that people rushed down from the upstairs seating areas to join them. Apparently it took a few non-wedding songs to convince everyone to sit back down/go back up.
My brain survived til the end of the concert only by God’s grace. I did have some seizures, but they weren’t nearly as bad as those from the morning…most likely since the rescue drug was still in my system a little bit. It didn’t hurt that the klezmer program was shorter than a traditional symphony concert, and much quieter. Add some noice-reducing earbuds, covered eyes, lobby naps and…well folks, we made it!!!
I suddenly realized I had nothing intelligent to say when I was about thirty-six inches from reaching Mr. Perlman backstage. Thankfully he’s played thousands of concerts and met who-knows-how-many admirers throughout 60 years as a concert violinist. He knows my violin professor from my late high school and early college years, which was a useful icebreaker, and I gave a brief recap of who I was and what had happened to me. Parking wheel chairs as close as possible added a dash of comic relief, then – snap! – the (no-flash) photo you see above. I’m currently counting how many different walls on which I could hang said picture.
But you know what the best part is, my blogging friends? He signed my sheet music for the violin solo from Schindler’s List. The same sheet music Mom bought me when I was 12 years old. The same sheet music I practiced for my very first solo with a grownup orchestra. Now that‘s a keeper for a lifetime.
Ivan: Happy new year everyone! I’d like to give an update on how Grace and I are doing not only medically but also with life in general. We have some exciting career and education updates to share! That being said, I’ll start with the medical side and approach it somewhat systematically, so—please bear with me. 🙂 Physiologically, Grace still faces two main challenges: seizures, and the effects of her traumatic brain injury (TBI). Her seizures are triggered by light, or more specifically, sudden changes in bright light. This encompasses everything from sunlight glinting off of cars, LED headlights and taillights, exposure to LED lights in general, fluorescent lightbulbs around our apartment (which occasionally flicker), as well as unexpected videos or ads on TV, computer, and phone screens. These seizures drain Grace’s energy, and often a bad string of seizures takes days to recover from.
Because of her TBI, Grace needs a lot of structure in her daily routine. It is hard for her to face open-ended situations (like life), and unexpected changes to her schedule are hard to process. TBI also limits her energy so that she is only able to work on activities for around 20 minutes at a time before needing to rest. When Grace is particularly fatigued, she may even experience TBI episodes in which, for usually around 10 minutes or so, she regresses to behaving like a five-year-old child having a tantrum. She becomes upset and unable to process what I say until the episode passes, and she returns to her normal self.
Needless to say, Grace’s daily life is extremely limited. I feel so sorry for her—at times the imagery of a caged bird comes to mind. I remember how gifted, energetic, active, talented, and vivacious she used to be, and she still possesses all of those characteristics now, but is unable to fully express herself due to her physical limitations. It’s hard to see my 25-year-old wife stuck at home because even walking from our apartment to our car in the parking garage poses a serious seizure threat.
Yet her attitude continues to amaze me daily. She knows who she is—a beloved child of God—and she knows where her eternal future lies. She is a fighter who pushes herself beyond what anyone else (including doctors, at times) might recommend, and I believe God has blessed her tremendous efforts so that, despite her limitations, she has been able to accomplish more than many would have predicted.
For a number of months now, Grace has been enrolled in an accelerated online B.A. in English degree at Cal Baptist. In the face of huge obstacles, I have seen her persist time and time again, giving her absolute best even when it hurts. God has blessed her efforts to the extent that her professors, who were initially unaware of Grace’s accident and limitations, have highly acclaimed her work. Way to go Grace! Keep giving your best to God and He will take care of the rest.
On my part, I have been blessed to continue my own studies as well. I’m currently enrolled in an online EdD in Organizational Leadership at Grand Canyon University. God has been helping both Grace and I manage our responsibilities as best as we can so far, and we will continue to rely on His grace throughout this year and beyond, every step of the way.
No one knows what a year may hold, except for the One who knows all things—including human hearts. May we dedicate our lives to pursuing the One who pursued us first, giving Him all the glory and praise because He deserves it all and so much more. Thank you all for continuing to lift us up in prayer. Your love means the world to us, and we are humbled to continue to share our journey with you all! May God bless us and make us a blessing.
I’d like to close out our blogging year on a romantic note! ❤ As you may (or probably may not) know, Ivan and I got married on December 30th, 2015. I spent our first anniversary in the hospital, and Ivan spent our first anniversary moving us into a handicap-friendly apartment. We saw each other for less than an hour that day. Anniversary #2 was another bust since I was still recovering from yet another hospital stay. This year finds us 0 for 2 on romantic December 30th’s, but it’s looking like anniversary #3 might actually be a go!
In honor of this (hopefully) momentous occasion, I will grace y’all with the story of when Ivan asked me out for the first time and I said no.
It was a dark and stormy night…well, I think it was raining…maybe.
November 2013 was halfway through my second semester at CBU, and halfway through Ivan’s seventh. I’d “liked” him for most of the previous semester – as did a surprising number of other girls in the choir and orchestra where he and I both played. Since he never seemed to notice me playing violin in his line of vision every single concert, I decided he must not be the one for me. I mean, there wereother cute, godly guys out there, right? Right??? Moving on maturely must not have been too appealing since I distinctly remember telling Mom two things that summer: 1) I would never date Ivan Utomo and 2) I would never find a boyfriend among the available selection at CBU. Bitter, much?
Anyway, skipping ahead to the afore-mentioned November 2013. Ivan had finally spotted me sitting across the piano…unbeknownst to me. I was preparing to solo with the orchestra at the fall concert, and I remember getting a couple of super nice texts saying how good I sounded in rehearsals. How Ivan had my number I did not know. I also did not bother to find out since I was so over my Ivan “thing.”
What I didn’t count on was him inviting me to go with him to the school play. I had invited a group of friends over for a game night a couple of weeks before (Mom had made me put him on the Facebook invite), and this play seemed like his super awkward way of trying to pay me back. I told him several times that he really didn’t have to, that hanging out was no big deal and I was glad if he’d had a good time, etc. He still bought the tickets. Now he was making me feel really awkward about the whole affair, and I remember one extraordinarily unfortunate episode where I tried to pay him for my ticket right before a choir rehearsal. Mercifully I didn’t realize that we’d attracted the attention of the entire choir, who proceeded to make bets about who would win and whether or not going to a play meant we were “together.”
Those who bet on Ivan won. I didn’t pay for my ticket.
The play fell on the day after my orchestra concert. I hadn’t devoted much time to thinking about it since I was focused on preparing for my performance…oh, and because I was so not going down that “liking Ivan” road again. Ivan (and God!) had other plans. Somehow he found me backstage a few minutes before the performance and invited me to dinner before the play the next day.
I said no.
The school dining center was too expensive. I didn’t have a meal plan. It was fine, thanks, I’d just catch him at the theatre. He blinked sheepishly before wandering off.
My only excuse for this heartless and/or extremely naive behavior is that I was trying to get “in the zone,” and he had just played some serious interference. Preparing for a major solo performance is a lot like preparing for a major sporting event. You need those last few minutes to focus, run through important parts of the music in your head, try to get into “character” for the mood of the piece. Walking up on someone just before they step on stage is NOT helping them out in any way. Hence my rebuttal. I was already in character, not allured by the idea of spending student worker wages to eat with a guy I was trying desperately not to be interested in again, and completely unaware that he had just upped our “friendly-get-together” status to “dinner-and-a-show” date status.
All of the above occurred to me after I finished my solo. I returned to play in the orchestra for the latter half of the concert, so I had a Beethoven symphony’s worth of time to wallow in remorse. What should I do??? I’d definitely hurt his feelings, and probably embarrassed him, too. No poor guy wants to be told “no” within earshot of people who would most certainly embellish his unfortunate moment in the retelling. But what should I do?? I decided apologizing was the torturous but probably called-for end to our encounter. I then prayed that God would show me some way to patch things up without tracking him down the same night (not a very selfless prayer, I admit).
Finding no alternative to the apology, I hunted for Ivan after the concert – and hoped he’d already gone home. As providence would have it, he had not gone home. Now it was my turn to look sheepish, but at least I had the presence of mind to steer us out of reach of prying eyes and ears before I began. “Umm…” I had never noticed that intricate gold pattern on the carpet before. ‘”Umm…I just wanted to say it was really nice of you to invite me to dinner.” The pattern was really fascinating. “Well, umm, I guess you’ve probably got other stuff to do before the show tomorrow, too, but…I guess I could meet you at the dining center if you’re still up for it.” This was the unfortunate moment where my eyes had to part ways with the pattern. Now it was his turn to say “No,” but he didn’t.
Good morning, everyone! It’s been a little bit since I’ve written, but between Christmas excitement and getting over all that brain testing, blogging hasn’t exactly felt like a strong point.
That’s what I want to write about today: how do strong points (or not so strong ones!) relate to our “God with us” meditations this Christmas season? Taking human form is God’s inconceivable offering to us. God gives Himself to light our darkness and lead us out of the mess we’ve created. Usually we associate the word “offering” with something we give to God, and not the other way around. Why should the living God willingly humble Himself to make His own offering? Because He loves us.
So what happens for Him at Christmas? We celebrate God loving us, and I can’t think of a better truth to celebrate. What I do wonder is how best to celebrate it, though. In the Old Testament (the part of the Bible that covers Israel’s relationship with God before His incarnation), altars were essential to all parts of worship. Placing a sacrifice on His altar demonstrated everything: thanksgiving, repentance, and even freewill gifts. An authentic sacrifice was always the best a worshiper could give.
As I think about Christ sacrificing Himself for me, I realize I have several sacrifices that belong on my altar to His love. I don’t need to earn my salvation thanks to the totality of His redemption, but I think Christmas is a meaningful time for offerings nonetheless. Over the past two years, there are so many outcomes I’ve begged God for. Some have come true, and some haven’t, but they all belong on my altar.
Thanksgiving: walking, talking, taking care of myself, watching God care for my family as they cared for me, maintaining relationships with family and friends (often online!)…These are just a few of the items on my list. How often did I say “thank you” but then take the gift for granted later?
Repentance: This is a category I’d prefer to leave off the World Wide Web entirely, but a “catch all” area I could grow in is humility. An extra dose of humility might cut down the times I give myself too many extra pats on the back, or those times I catch myself feeling like I deserve better than I get.
Requests: I’d love to go out again, to be strong enough to meet with people again, to not close my eyes and “listen” to movies instead of watch them, to be 100% confident I’ll make it to my parents’ condo down the road in spite of whatever headlights lurk outside our garage. God knows how loudly I cried out for my left hand last year when it still had a fighting chance. But He deserves my best on His altar, not a whiny Santa Claus list. My best is “I have so very many things I want, but if they’re not on Your list for me, I know You are still good.”
And now we get to the nitty -gritty part. The freewill offering. Can I sacrifice my favorite strength (writing!), and say “Thank you, God, but it still belongs to You. My left hand belonged to you, my music belonged to you, and this does too. Sometimes You give, and sometimes You take away. Blessed be your name.” Can I do that? I wish I was shouting YES at my laptop screen, but I’m not. And that writing/music offering is not all. Can I sacrifice my “dearest” request and say “Here’s my brain, God. If You had healed it completely, all my other requests would be fixed by now. But thank you for giving me back more skills than I should have. You’ve given me back so much! And You’ve taken away so much. But blessed be Your name no matter what.”
So there’s my Christmas altar for you, in all its glory – or lack thereof! I wish I could say all my offerings were already neatly arranged with some candlelight and tinsel and soft carols playing in the background. If I’m honest I’ll say I’m sooo not there yet. The freewill part is especially killer! But I’m trying.
Most of us (religious or not) spend December counting down to the 25th. What’s not to love about all the sparkly festive magic that only comes once a year? I couldn’t wait for “permission” to crank up my Spotify, pull out our Ikea tree with its box of quirky ornaments, and douse both of us in peppermint hot cocoa – starting Black Friday at dawn. Missing out on most of the Christmas season two years in a row just about quadrupled my excitement for Christmas 2018 (!!!!)
But more importantly, I’m excited to count down to the moment God became “God with us.” I grew up with this Christmas saying like most Christian kids, but that was about what it was – a nice Christmas saying. Which is why my accident did not happen on December 3rd by mistake. My family was suddenly living “God with us” literally hour by hour in December 2016, and I lived it hour by hour with them in December 2017. (If you missed last year, you can check it out here.) “God with us” has grown real to me in a dimension I literally can’t describe, and this December promises to be no different.
As many of you know I had the final evaluation of my traumatic brain injury (TBI) about a week ago. The testing fell on the day before Thanksgiving, which is just how things would work out for me 😉 A 5 hour test (with only 5 minute breaks) left me mentally decimated the next day…and the next…and the next…but Mom was sweet enough to run us over two plates filled with all those Thanksgiving fixings so Ivan and I could still have a Thanksgiving Date. “Romantic” is not the first word that comes to mind for the last Thursday in November, but it is also a word for which I’m ALWAYS thankful 🙂 ❤
And now…drumroll please…the TBI results!
God has blessed us with so much healing since that December 2 years ago, and the tests were an excellent witness. There were several categories in which I scored normally for my age, and I even scored an exceptionally high verbal IQ compared with other healthy, graduate-level twenty-five year olds. (My competitive side was jumping for joy on that one.) There were also some lower scores, though. I still struggle with visuospatial skills, a minor attention deficit, and a significantly impaired processing speed. “Processing speed” is the energy I use to take in information through talking or reading, make sense of it, and then respond. Hopefully that explains why I still only do very short social visits. I promise I like hanging out with you…really! 😉
God with us. God didn’t give me back a perfect brain, but He gave me back a pretty remarkable one considering how damaged it was. God was with us to preserve my life, He was with us to promote my healing, and He’s with us now to move forward with my finished picture. Considering most specialist checkups will fall in or near December each year, I think I’ll always have an extra reminder to celebrate “God with us”…
Happy Saturday, everyone! Yes indeed, that is my first cup of hot chocolate since the accident. Growing up I absorbed it incessantly during the holidays, but alas, my two past Thanksgivings/Christmases have been spent either in and out of the hospital or completely in the hospital. It feels SO good to be kicking off Thanksgiving week like the good ol’ times! 🙂 ❤
I actually have a new brain update to share this weekend, as I’m scheduled to do a final analysis of my traumatic brain injury on Tuesday. My family and I were told that it takes about two years for traumatic brain injuries to heal. Not all brain injuries heal completely, but the two year mark is when doctors decide which parts have healed completely and which might have residual deficits. I’ll be in Redwood City this Tuesday to do a 4-5 hour test with a neuropsychologist. It will take a week or two for them to evaluate the exam, and then we’ll meet back with the doctor to discuss my results.
It might be an odd one, but my request for this test is that my days leading up to it would be as “typical” as possible. Seizures and fatigue cause my mental abilities to fluctuate depending on what happens on a given day (or what’s happened during the past few days) so it would be good to be neither at my best nor at my worst on the testing day. This will give us the most accurate information. Thank you all for your prayers, and we look forward to sharing our results with you when we receive them.
I may not be about to become millionaire, but I am looking forward to a final answer!
“Fall Backward” is everyone’s favorite Daylight Savings Time. Resetting clocks might be a pain, but who doesn’t enjoy that extra hour of sleep?
Ivan and me, apparently.
It’s Sunday morning. Our trusty iPhones switched automatically and woke us up at our traditional time, but on the updated schedule…which brings us to the first lame moment in my story. Instead of popping up unusually refreshed when Ivan’s alarm went off, we both groaned and drifted back to sleep. My alarm rang a few minutes later, but produced the same effect. I dragged myself to a seated position thirty minutes later, mumbling something about breakfast.
At this point we’d gotten an extra hour and a half of sleep but still felt like we were being dragged out of bed an indecent amount of early. You might think this is just normal “weekend mode” – except that it’s not. We never sleep in. (Yay for medication schedules!) The second lame moment in this story is all me. I started feeling funny right as I mumbled “muffins..breakfast…” As providence would have it, “breakfast” is a very powerful word in the mind of Ivan. Recently-baked pumpkin muffins motivated him to open his eyes, which he did…Just in time to watch me have a seizure. Poor Ivan was now very much awake without pumpkin muffins. I was even more not awake after a second seizure, but getting up was a must at this point. No medicine could happen until after muffins, and I needed muffins. Medicine, that is. 😉
I’m often unable to walk after a seizure episode, but Ivan guided a wobbly me to the table on my own two feet since I’d “only” had two seizures. He glanced at the clock after I sat down and then grabbed his phone. They were an hour different. We’d just missed Daylight Savings Time! This brings us to the third lame point in our story. I’d just had fatigue seizures. Any time I have a seizure that’s not triggered by light, it’s been triggered by extreme tiredness. Apparently I was that tired – after sleeping in an hour and a half!
Last week had been an experimental week. We didn’t feel like I was strong enough for in-person visitors again, but I had a couple of necessary phone calls to make to Riverside. Two phone calls shouldn’t be a big deal, right? Both calls lasted longer than I expected, and I found myself exhausted on Tuesday and Thursday. I tried to proceed with my normal activities on the other days (I’m always surprised at just how far adrenaline, will-power, and a little caffeine can take you!) but I finally burned out on Saturday. I lounged around in pajamas feeling like I had the flu, which I knew I did not. What I did have was fatigue seizures the following morning. (Side note: Ivan’s excuse for being so tired on Sunday was less medical but still justifiable. He’d spent Saturday afternoon corralling Junior High kids and their parents for a school event, and then helped me around the house after he got home.)
Salvaging our Sunday became our shot at salvaging Ivan’s only day off that weekend. We ate all the pumpkin muffins, drank multiple pots of coffee throughout the morning, but only bolstered our status to half awake. Ivan ran across the street to Starbucks a little before 3 pm. At least it was a Bonus Stars day if you ordered lattes.
The fourth lame part of my story is mostly Ivan. Ivan is from another country, and is the master of making trans-Pacific flights sans jet lag. Case in point: In June 2015 he touched down in LAX after a music tour in China, spent the night at a friend’s house, and then drove me up to see his parents the following day…in the Bay Area! It’s a seven hour drive. For the record, I did offer to drive part of the way so he could sleep, but he said “no” like a true gentleman. My true gentleman mustered even more energy to take me into San Francisco proper and propose a mere three days after our arrival.
All this to say, a measly one-hour time change should NOT take Ivan down along with it. My going down is a bit more plausible 😉
I’m sad to admit that church was not part of the Sunday we’d planned – or the Sunday we actually lived! The Lord’s admonition to “not neglect meeting together” (Heb. 10:25) is a command Ivan and I take very seriously. On the other hand, the Lord also created the human body and calls it the temple of the Holy Spirit. He instructs us to use His temple respectfully (1 Corinthians 6:19), and we take that command seriously as well. Our church attendance remains an ongoing conversation, but for now we feel that keeping my body (specifically my brain) safe as much as possible is the right choice. We look forward to resuming our weekly visits as soon as we are able! In the meantime, we’re trying to make the best of our extended hiatus with all the sermons, worship music, etc., that are now easily accessible online. We’re grateful for God’s provision in that regard, but still realize that God wants good community as well as good content whenever possible – hence the importance of church.
But anyway…To everyone else who missed the boat last weekend…we’re right there with ya! We just hope you didn’t have to drink three servings of coffee and two shots of espresso before 3 pm.