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.

Can’t It Be Enough Already?!?

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Oh ya know…just the “Bare Necessities”…

 

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 happensbut 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. 🙂

Violin: Passion and Problem Solving

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We will always be friends!

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.

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He also sold me my first full sized violin when I was 9!

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!

Can I Really Call God ‘Kind’?

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My personal story begs the question. After 14 months of (mostly) forward progress, we find ourselves taking a whole lot of disappointing steps backward. I’ve had 40 seizures in just the past two weeks, and all of them were triggered by lights in my own apartment. But today’s post is not really about me. It’s about a whole lot of other stories that are just as raw and just as real.

I’m not sure if the accident has helped more broken people open up to us, or if it simply opened our eyes to the suffering we used to pass by without in-depth consideration. We know several people with epilepsy or who’ve had strokes. There are sick children and sick grown ups. Some of them die. There are drugs. There are lost jobs. None of the sufferers – or their families – can be what they once were. Broken people are scary to approach if you’ve never been broken yourself, and I don’t begin to know how some of these losses feel since each broken person is different.  Nevertheless,  I hope I can talk with them and pray for them better since I do understand pain, frustration, and confusion a whole lot more than before. Stepping away from our personal circle, though, there are greater national and global tragedies that not only wreck lives but eliminate them, too. So, what do we do with ourselves? And what do we do with God?

Let’s talk about the God question first. With all the messed up people and places in this world, how can anyone possibly call God kind? Let’s be curious together…I know I need that answer too.

Since our question concerns God, maybe He should speak for Himself first.

“For rarely will someone die for a just person – though for a good person perhaps someone might even dare to die. But God proves His own love for us in that while we were still sinners, Christ died for us.” ~ Romans 5:7-8

We broke God’s world by choosing bad things over His good way. I know I’ve done things I’m not proud of. Instead of holding me to what I chose, God broke Himself for me so He wouldn’t have to leave me broken forever. Why would He chose to break Himself? I don’t think I’ve ever chosen brokenness over wholeness.

“So that in the coming ages He might display the immeasurable riches through His kindness to us in Christ Jesus.” ~ Ephesians 2:7

We can rely on His brokenness now, so that we will be able to experience the richness of His wholeness when He makes all things right. I know I often wish for a “fast-forward” button to the day when God returns to His earth and brings healing to creation – and to all who trusted Him in the meantime…BUT…

“God, Your faithful love is so valuable that people take refuge in the shadow of your wings.” ~ Psalm 36:7

We would have no idea of how faithful and valuable God really is if we never knew loss in some capacity.  We have souls that live forever, but our physical conditions are only temporary. Our job is to cling to eternity, and to the hope that we will enjoy God most fully at the end of our earthly life. Until then, we have the beautiful (albeit sometimes painful) opportunity to know God as a faithful refuge.

If we look beyond the temporary, God is indeed kind. Trusting that is what we do with ourselves.

 

 

 

Gun Shots Outside Our Window!

 

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It was a dark and stormy night. Well, actually it wasn’t. It was a peaceful Sunday night. Earlier that day I’d experienced 7 back-to-back seizures, but surprisingly, that is only incidental to our story. However, it does explain why Ivan and I were watching TV in our living area. Both of us were exhausted. Anyway, right in the middle of an episode from The Office, we were startled by 7 ear-splitting shots outside. We stared at each other in disbelief. Both of us have gone shooting before, and I’d spent 8 years in Wisconsin (aka deer hunting central), so it wasn’t hard to identify the sound: gunfire. 8 more rounds rang out only a few seconds later. “Get to the bathroom!” I ordered. (Side note, I’d received “active shooter” training at the school I used to work at. I’d hoped it would never prove useful. Anyway, that explains why I took the lead over Ivan in this situation.) Ideally, we would have run. It’s always better to run away from gunfire than hide. Shooters look for people hiding first. However, since I can’t run hiding was the best alternative. The bathroom made sense because it was the most bulletproof area. At this point we didn’t know if this was a random shooter/terrorist situation, or some sort of gang hit. There had been silence before and after, so we knew it wasn’t a domestic dispute.

Once installed in the bathroom, we called 911 and put our phones on “silent no vibrate”. This seems like a random detail, but it allows you to communicate with outside help without tipping the shooter off if they get close to your hiding spot. We agreed if we heard any more shots – or even footsteps – we’d turn the bathroom light off, jump behind the shower curtain, and lay down in the tub. Tubs are fairly bullet proof, too. I was really hoping the gunman was in the shopping center across the street, but it was impossible to know. The gun had been extremely loud, so if he was over there he had something a lot bigger than a handgun. Since there were no more shots, he’d either run away completely or was looking for somewhere to hide. Our apartment complex has several stories and the hallways are like a maze, so it would be a decent place to evade officers.  We couldn’t assume he wasn’t inside. However, at least the silence made it more likely he’d had a target and wasn’t out to kill at random. We heard sirens only a couple of minutes later, signaling the arrival of law and order.

The police didn’t fire either, and we decided after a while that either they were still searching for the gunman or that he had fled the area completely. After another long while, we crawled toward the bedroom and Ivan peeked out between a crack in the window blinds. A police chief and a group of officers were standing right outside our window gesturing. On the ground a few yards away, surrounded by orange cones, lay something that looked like a garment. After a few minutes of gesturing, they turned to our emergency exit (right next to our unit), and burst inside. That was not reassuring in the least. Was the shooter really that close to us?? Finally the running footsteps slowed to a walk, and we breathed a sigh of (almost) relief. Maybe we were okay after all. Ivan began to pray out-loud but we were cut short by a sharp knock on our door. There was an officer outside to question us. I couldn’t figure out why he asked us so many questions. How were we supposed to know what had happened? Later, when we found out the homicide had taken place literally outside our window, it made more sense. The officer couldn’t give us any more specifics about what had happened, but at least we knew we were safe now. He also mentioned that he hadn’t been over to our complex in ages since we lived in such a safe area. This would have comforting except for what had just happened in spite of the “safe” location.

All the dramatic cars and tape cleared out the next day, and our street has been quiet ever since. Two detectives came back on Thursday to question me while Ivan was at work. They seemed disappointed that we hadn’t run to the window to look out when we’d heard the gunfire. Seriously, I hope no one in their right minds would ever do that – even if it made the detectives’ job easier afterwards.

So, some things we’re giving thanks for this week:

  1. Apparently gun shots do not trigger seizures, at least for me
  2. I actually had been trained in how to respond safely to a gun situation
  3. God protected us from stray bullets
  4. This was not a terrorist incident

If any of y’all are curious and want to read the official article on what happened, I’ve included it here

Lord-willing, this is the ONLY time someone will ever get shot to death outside our bedroom window!!!

P.S. Unrelated to this story, Ivan wanted me to let you know that we had another ER trip this Wednesday. I had 20 seizures back-to-back in about an hour and a half. Thankfully my dad got me to the hospital fast enough, but we would really love for that not to happen again. Still working to find the best medication combo!

I wanna be where the people are!

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Earplugs + Sunglasses + Wheelchair = Ready to Go!

Hi everyone! Sorry for the Little Mermaid reference, but it’s very apropos. Going out is officially a rare, award-winning production. We’ve alluded to my homebound status in a few posts, and yesterday morning was an excellent example of just how much work goes into staying safe for a brief outing. I hope this step-by-step outline will prove both insightful and entertaining. 😉

Goal of mission: make it to and from church without having a seizure. I haven’t been able to attend church since early November.

  1. Noise-canceling earplugs, sunglasses, and travel wheelchair must all be in place BEFORE venturing out the door.
  2. Ivan brings the car to the complex’s loading zone so I don’t have to go in the parking garage (one time a combination of back-up lights and beeping triggered six back-to-back seizures plus an ER outing).
  3. We drive to church. I keep my “accessories” in place and look at my feet the whole time. It’s a foggy day, and sometimes headlights can trigger a seizure even through my protective sunglasses.
  4. WE MAKE IT TO CHURCH SEIZURE-FREE! I stay in the travel chair and keep my earplugs in and eyes on the floor (the powerpoint has triggered seizures before, too). We listen to most of the sermon (~25 min), but skip the music part and leave early to avoid noise and light triggers.
  5. Repeat the driving drill to get home.
  6. Ivan leaves the car in the loading zone to get me safely indoors, then parks in the garage.
  7. Once inside I can FINALLY ditch my earplugs and sunglasses and give thanks for a safe outing,

It’s ironic that although my brain injury is healing steadily, epilepsy introduces a whole new set of hazards to venturing past my apartment door. We were all caught off guard by the rapid development of this new condition…and even more shocked at how sensitive I’ve become to triggers that are unavoidable in daily life. Because the seizure electricity comes from the stroke area of my brain, I lose the ability to walk for about 3 hours after a seizure. This makes the travel chair a necessary safeguard for rare times I do venture outside.  The earplugs  are a lifesaver and the sunglasses make a measurable difference, but there are some triggers that are even stronger than they are. Although home is not 100% trigger-free, it’s a whole lot safer than going out. HOWEVER…as bleak as this all sounds, this post is not intended to be a “downer.” My goal is to give you all a micro peak  into the everyday side of life right now since most of our posts target macro developments. The good news is we are working actively with doctors to find a medication that is a good fit for my condition, and everyone is optimistic we can get there.  It would be great to have a fast-forward button on life and skip ahead to the nice part where I function normally again. But God gave us waiting periods for a reason, and we have to trust that. In addition to practicing patience we can find things to give thanks for – and laugh about – every day. “Laughter is the best medicine” is over-used because it’s true. I found the drama surrounding our church expedition yesterday morning quite funny, and I hope you can laugh with me about it too!

*Walking* Out of Therapy!

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Throwback  to the very first time I stood up after the accident!

Hi everyone! I hope the rest of your holiday season was fantastic. 🙂 My own new year is off to a memorable and positive  start on the therapy front, too! Honestly I never really imagined being in any sort of therapy. Much less for one. entire. year. But that is what happened, and it happened in 2017. I was just figuring out how to move  around in a wheelchair on my own this time last January, and we devoted hours every day – at home plus during multiple Kaiser trips each week – to help me relearn the most basic skills of daily life. And now we get to the good part: My therapy journey is finally coming to an end! Last Monday I said goodbye to my physical therapist. Although my abilities aren’t 100% perfect, I’m blessed to have made it way farther than many stroke patients (not sure if enough people survive getting hit by a car to have comparisons on that front).  I look and walk totally normally to an untrained eye…just with some interesting scars on my legs. Such stellar progress does come with a long-term commitment: I was released with the understanding that I will continue spending around an hour each day doing my exercises at home in order to maintain the strength and flexibility necessary for normal activities. My legs still hurt occasionally and I’m prone to knee tendinitis, but overall I’m thrilled with my therapy end point given what we’ve been through.

On the left hand front, I’ve transitioned to occupational therapy as needed, which will probably look like a “check up” once a month. Here too, I’m still committed to maintaining my abilities through daily practice at home.  We now know my inability to feel that hand is permanent due to the location of the strokes in the brain (confirmed by 3 different neurologists). Nevertheless, I’ve had such gifted therapists that I can take care of myself, take care of our apartment, make simple dishes, type, and play basic piano just using my eyes to control my hand. Don’t get me wrong: in spite of all that progress, having the end prognosis confirmed made me deeply sad.  My skill as a violinist was integral to my pre-accident identity, and loss always hurts. I had envisioned God would answer my prayers by completely restoring feeling (especially since feeling is the key to playing violin). It didn’t happen. He did answer my prayers though, by giving me a gift I discovered only a short time ago. For the last year, my therapists wisely pushed me to the limits of what I could do without saying what was reasonable to expect from a stroke patient. This led me to believe I was making a “normal” amount of functional progress. However, at my most recent neurology check up a couple of weeks ago, the doctor  confessed that in 30 years of practicing he’d never seen someone able to use their hand “normally” if they couldn’t feel it. Wow. God doesn’t always answer prayers exactly the way we want Him to, but He does answer them in the way He knows is best. I’m extremely thankful for the ability to be an atypical patient and succeed at what is usually impossible.

On the brain note (it’s funny how brains always work their way in to these posts), we continue waiting to see if my new medication will kick in and begin working. Seizures are still frequent, which keeps me at home and often reliant on the transport wheelchair since my ability to walk is impaired for a few hours after I’ve had one. We keep hoping and praying…but in the meantime I wanted to share with you all the exciting progress God continues to bring in the other aspects of my recovery 🙂

New Year, Old Year

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Grace: Hi everyone! We hope you’ve all had a merry Christmas and are having a happy New Year’s Day. 🙂 This holiday week has been nontraditional to say the least, but incredibly meaningful and hopeful (especially compared to last year!). Last year I spent Christmas in the hospital and hadn’t even graduated to using a wheelchair. This year felt much more like our “first married Christmas” as we got some practice splitting celebrations between families (on separate days, since I still struggle with fatigue) and started our own personal Christmas traditions on Christmas Eve.

Fast forward to Saturday – the 30th – and we had the privilege of celebrating our 2nd wedding anniversary. This too felt much more like our first anniversary, since last year I only got to see Ivan for an hour and a half that day: he was moving us out of our old apartment and into a handicap/wheelchair-friendly one, plus dealing with other legal paperwork (all very necessary to the husbandly quality of providing and protecting, but decidedly not romantic). To be fair, the fact that I had just starting learning to transfer to a wheelchair with lots of assistance, had half my face still paralyzed from the stroke, and was working on swallowing without drooling was also decidedly not romantic. So as you can see, we had A LOT of catching up to do on this anniversary. A lot. We still had to split up the festivities over several days due to fatigue and seizure triggers, but I think we made the most of what was available at this stage (sushi for Ivan, coffee for me, and book browsing for both of us). And at the very least, being in the same place at the same time sans moving boxes, facial paralysis, drool, etc, felt like a celebration in itself.

To gloss over the challenges of this week would be misleading: several seizures, my new transport wheelchair, and lots of sunglasses and earplugs to minimize seizure triggers were all involved…not to mention missing church yet again. BUT the overarching theme has been gratitude and celebration. This time last year I doubt we could have imagined succeeding at or even attempting all the things we did do this week. It has truly been a week of blessing to our hearts – and I hope to the hearts of both our families too.

Ivan: Wow…another year is here!! As I take time to reflect on the past year as well as where we are right now, to be honest, I’m not even sure exactly how I feel. We’re still in a transition period, and we aren’t sure how that will end up. But I’m reminded of God’s truth that never changes:

King Solomon said, “Don’t boast about tomorrow, for you don’t know what a day might bring.” Nor what a year may bring, for that matter. So many things can happen in a year!! At times 2017 felt much longer than one year, but as I’m typing this it almost feels like it went by in the blink of an eye. What will 2018 bring? Only God knows. But He knows! So much of life feels uncertain because we don’t know what the future holds, but God knows and He extends His hands to invite us all in to His love and grace.

One thing I am sure of, is that Grace and I are so thankful for God’s care and provision throughout last year! We are thankful for the prayers of our brothers and sisters in Christ…your prayers! We are thankful for opportunities to grow, learn, and make progress, especially in terms of Grace’s recovery. God is a God who heals, restores. Healing takes time, and will be fully completed in Heaven, but we are grateful for the “in between” time–for the present, for each day that we get to walk closer with Him as He guides us through dark valleys as well as green pastures.

God deserves all the glory for 2017, as He will for 2018 and beyond…here’s to another year of pursuing and loving Jesus, as He has first loved us! 🙂

I Played A Game!

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Post-game selfie!

Happy First Day of Winter, everyone! I don’t know about you all, but I’m celebrating the shortest day of the year with a cozy fleece-and-scarf combo, paired with a steaming cup of Peet’s coffee (by far the best coffee in NorCal…or possibly anywhere).

So after that shameless plug, down to the real post 😉 :

We’ve spent a lot of this holiday season in various medical facilities (NOT exactly how we planned for things to go) and you, reader friends, have gone right along with us. However, Christmas is a time for celebrating all the gifts we’ve received: most notably our savior Jesus, but also literally thousands of other blessings that pop up every day.

So in the spirit of Christmas, I wanted to share with you all a “little” praise from last night: I played a game for the first time since the accident! My family has always been into games…card games, board games, long games, short games, etc…pretty much any kind of game except video games 😉 . The game enthusiasm dates back to our Wisconsin years, where frigid winters and little daylight made indoor games our pastime of choice.

Anyhow, the brain injuries from last December put my game career on a hiatus…short term memory, sequential thought, strategy, and spatial discernment all being skills I suddenly lacked. However, Anna brought a new card game called Sushi Go when she moved home last weekend, and it looked so adorable and fun that I just had to try it. We started out tentatively: Ivan and I were a “team” (Mom and Anna played for themselves since it’s not a team game) so I could have someone to remind me of the rules and give decision-making hints. It took less than 5 minutes for me to start debating Ivan’s strategy rather vigorously…at which point everyone voted that we’d all be better off (i.e. happier) if I played solo. I successfully made it through 2 games of Sushi Go all by myself! While Ivan ended up winning both rounds (I guess I shouldn’t have argued with his strategy after all) and Mom and Anna tied for the middle spots, my scores were still close enough to theirs to be respectable. It might seem like a small moment in the middle of “normal” holiday festivities, but last night was actually a great tangible reminder of skills regained. I think God knew we needed another landmark for how far He’s brought us already, and encouragement that no matter what current brain drama may be unfolding, He’ll keep carrying us the rest of the way.

Also, I’m reminded of how much I like games….and sushi.

Hope from Redwood City

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Just so y’all can see brain waves on an EEG!

Grace: Hi Everyone! As I think you already know, I spent Monday-Saturday of last week as an inpatient of the Epilepsy Monitoring Unit (EMU) at Kaiser Redwood City. The purpose of the visit was to reexamine my initial diagnosis and uncover why my seizures appeared to be getting worse instead of better. Since that unit is very specialized and seems to have a long waitlist, the fact that I got a bed there so quickly is truly an act of God and a result of your tireless prayers…so once again, thank you! The good news about the EMU is that everyone (doctors, nurses…EVERYONE), was kind, helpful, and expertly trained. The bad news was that since my head had to be hooked up to an EEG machine for 5 days, I couldn’t really leave my bed (much less shower….GROSS!!!) for 5 days. Hopefully this explains the lack of photo documentation during that part of my stay 😉

Okay, so the part we’ve all been waiting for: results. Although I imagined that we’d get some definite clarity and direction after the first day or two, that was not the case. My unusual symptoms had even my initial specialist confused, and we all began to fear that I might leave the EMU in as unclear a state as I arrived. This drove us to a lot of prayer and crying out to God for some sort of intervention…. and was possibly the biggest faith challenge I’ve faced thus far: could I keep saying “And if not, He is still good” when it felt like I’d already been through too much and just couldn’t keep going anymore?? But mercifully, after putting us through that test, God did have other plans. On Friday – the last day of testing – God brought a new epileptologist who was able to decipher my complicated brain. He reviewed all my recordings and explained that although there was focal epilepsy in the stroke areas of my brain, it wasn’t causing the entire problem. Instead, my large and unusual-looking seizures were the result of the traumatic brain injury (TBI) overreacting to focal seizures occurring on the other side of the brain. Therefore, with a medication change to control – or at least diminish – the epileptic seizures, the large TBI  seizures should go away too. (Simple example: a person who’s allergic to cats doesn’t sneeze if they’re not around a cat).

So, things to be thankful for:

  • Although the epilepsy diagnosis is still permanent, the new med seems to be working well so far and I’m doing better at home
  • The large seizures we’ve all been so worried about weren’t actually harming me since they were more of a reaction and didn’t involve extra electricity in the brain

Even my fabulous new doctor admitted that this won’t be an overnight transformation like some cases are, but he was extremely positive and optimistic about the long term likelihood of my functioning “normally” and without visible seizures. Praise God!! That is the most hopeful outlook we’ve heard in a long time – and a superb early Christmas present. 🙂

Ivan: Just wanted to chime in…yes, last week was another challenging week, but God yet again proved Himself faithful (spoiler alert: He always will ;)). To reiterate what Grace said, our current diagnosis is that Grace has focal seizures which immediately trigger larger TBI-caused seizures. Medication should help control the focal ones, and the TBI ones should heal with time. On behalf of Grace and I and our families, thank you all so much for your prayers!! Our God is mighty, holy, loving, and present, and we know He hears our prayers. As we approach Christmas, may we pause to reflect on His eternal gift to us and thank Him appropriately by worshipping Him in our lives. God bless you all!