Hello, blogging family! Thank you for walking with us for almost 22 months now! Wow. You’ve shown us a whole lot of grace! 😉
Anyway, Ivan and I thought one way to say “thank you” would be to give YOU a chance to share with us. We’re planning to do a video blog to talk about any questions or thoughts you’d like to share. Any topic is fair game!
If you’d like to join in, feel free to private message me (Grace) on Facebook, or leave a comment on this post below. Can’t wait to “talk” with you!
Hi everyone! Last week Ivan talked about being open to what we don’t know. “Knowing” we don’t know everything is the key to personal growth and gaining more…knowledge!
But let’s zoom in a bit closer and only focus on knowing people. What don’t you know about the people in your life? What don’t your people know about you? Take me for a guinea pig. My picture looks pretty normal. You’d never know from looking at me that:
Sometimes I can’t make the 2 min drive to my parents’ condo.
Those headphones aren’t for music, they’re for extra brain protection.
Same deal with the sunglasses (notice how I’m in the shade).
I often keep my eyes closed to avoid headlights even when we drive during the daytime
I’m almost never outside long enough to take a picture
I have titanium rods in both my legs, even though I’m standing on some uneven gravel in the picture 😉
What if you talked to me in person, or even just read the blog? I sound (and write) pretty normal, so you might not realize that:
My traumatic brain injury is still very real (reading and writing are the only skills that haven’t been affected in some way)
I have seizures frequently – almost every day
If I did talk to you in person, I could only do it for about 15 minutes. Otherwise I might get too tired and have a seizure later that day.
I’ve had two strokes. I get so tired that I usually nap twice a day!
I’m just one person. One normal-looking person. What about everyone else? People can smile and have a normal conversation and go out to dinner in spite of lots of things. Maybe they, like me, have an invisible disability or illness. What about other life issues like problems with friends, problems with family, problems with finances, or problems with a career? And then there’s mental health problems…emotional health problems…spiritual health problems.
Many invisible problems stay invisible for a reason. Society tells us that happiness means being pretty and successful. Or at least looking like it.
I’m so thankful there’s another way! The Apostle Paul had an invisible disability, too. “Three different times I begged the Lord to take it away.Each time He said, ‘My grace is all you need. My power works best in weakness.’ So now I am glad to boast about my weaknesses, so that the power of Christ can work through me” (2 Corinthians 9:8-10). As believers, God calls us to look real, not pretty. Transparency about our weaknesses – whatever they might be – proves that He can love and save literally any kind of person.
Some day God might heal your health issue, solve your family conflict, close your emotional wound. Or He might not, but give you grace to shine through it instead. You have unique potential to put His power in the spotlight either way!
On that note: we also need to radiate grace to those around us. That coworker who’s picking at every little flaw in your project? Your friend who suddenly quit replying to your texts? That person in class who has to raise their hand for EVERY single question? And the proverbial dude who cuts you off on the freeway? What do we not know about them? They could have a million issues stuffed away inside…
Ivan: Hi everyone! This video is a short devotional I recorded for my Valley Christian Schools. In it I share some details about the accident that I don’t think Grace or I have shared before. I hope it encourages you to rest in God’s sovereign power and knowledge!
“Live your purpose.” That’s the motto for California Baptist University, where I went to college. I’ve transitioned through several purposes at the ripe old age of twenty-five, but there’s one purpose that I never wanted to live (or do): chores. I had a moment in middle school when I decided one of my motivators to become a famous violinist was…no chores! I was sure those people didn’t do laundry, or vacuum, or dust, or…
Mom loves chores. Okay, she doesn’t love chores, but she loves creating beautiful living spaces. Unfortunately (for me), beautiful living spaces involved chores. Hence our collision course.
I was obsessed with violin in high school. I needed (i.e. obsessively wanted) so much time to practice that..who cared if my room was tidy, my floors were swept, my laundry put away, etc.??? Mom always came back with “When you get married, you’re going to be responsible for how your whole house looks, not just your room!” I wasn’t married at that particular moment, and had no plans to be so in the near future, so I didn’t see the big deal.
In college I actually did need to study a lot after I changed my major, but my disinterest in chores remained exactly the same. As did Mom’s interest in them. Not only was she interested in chores, she was now interested in my cooking expertise, too! Having a boyfriend only intensified our “remedial” household sessions. “No guy wants to sign up for only spaghetti and mac-n-cheese dinners for the rest of his life!” It took an engagement ring to get me (mostly) on Mom’s side.
I find it extremely ironic that now my only job is caring for our apartment. My return to a real job was dubious at best, so the main point of occupational therapy was problem solving how to do basic chores in spite of my stroke deficits. Even now, tidying that 700 square-foot apartment I talked about last week takes up so. much. time.
Our apartment isn’t the only space that feels small. Social media has a killer instinct for making people feel small, too. Between Facebook and Instagram, I’ve seen four friends start fancy new full-time jobs just last week…and I’ve lost track of the number of newly-finished grad degrees. Also, baby apocalypse.
My “chore career” felt minuscule compared to all those significant updates I scrolled past. I desperately needed to figure out what counted and grow some roots. Right on cue, I read this in my morning devotion: “I’m doing the very best I can, and I’m doing it at home, where it counts.” Don’t get me wrong, this post is NOT a plug for quitting your job or dropping out of school to devote yourself to chores. That would be a little crazy, to put it politely.
But that idea did remind me that Mom was right all those years! Doing my best with our home is important. This counts as a purpose I can live, even if I’m often disconnected with the outside world. True, most people also have demanding purposes at school or work – or at both – and they count, too. I hope (and pray) this blog is one of those extra things that count.
So, to glue everything together, this post IS a plug for two simple questions. I hope they help you ground yourself and de-stress just as much as they helped me!
Are you doing the very best you can? That was “YOU,” not him, or her, or they, or any other pronoun. Just you!
What counts to you? Is that the place you’re doing your best?
Not too complicated, huh? 😉
And now that you’ve made it to the end of this long post about work…Happy Labor Day!
P.S. Please clean your room.
P.P.S. The quote was from a devotional paraphrasing Psalm 101:2.
It’s time to introduce a quirky side to the blog: video posting! (Side note, since looking at my face and/or listening to my voice on a video really creeps me out, this is my disclaimer in case it creeps you out, too. 😉 ) Why did I make a video about where I live and write? I think it makes the nitty-gritty of our life way more real than just telling you with words. And I have a way bigger, way more important reason, too. Dive into these videos to find out just what it is!
So here’s that link I was just talking about. I think it’s a fantastic resource to explore the truth about who God is and how to get Him in your life!
I hear about my suffering all the time. Most people say that what happened to me is horrific, and that I’ve suffered a lot. That’s one of the reasons I have a blog! But have I? Have I really suffered? I haven’t been friend-less. I haven’t been homeless. I haven’t been food-less. I haven’t lacked medical care. Anyone who’s been in one of those situations might argue that they’re the ones who’ve experienced true suffering. Comparing all of us together, how do we know which predicaments qualify as real suffering? The more I ask the question, the less I know the answer. I feel like a blindfolded little kid trying to pin a “definition tail” on a donkey named Suffering.
Obviously there’s no donkey named Suffering, and no tail for me to pin. What now? I invite you to walk with me on a journey to answer that “What now?” question.
When I arrived at my neurological rehab hospital on Christmas Eve, 2016, the nurses fussed over me as they adjusted my legs, cleaned out my tubes, and gave me my meds. “You’re way too young to be here, honey!” Many of them befriended me and treated me like a diva for the rest of my stay. (Yes, I was at least 20-30 years younger than the other “younger” patients, but still.)
Ivan calculates that I made it back to the mental level of a teenager during my Casa Colina stay. My brain had cleared just enough to begin sorting two things: 1) what had happened to me, and 2) where that landed me in the grand scheme of things. #1 was fairly easy to decipher, so let’s jump to #2. For starters, I began remembering world crises. I recalled many of the news articles I had read that fall season before the accident. Articles about the strife in Syria and the refugee crisis. Who was I compared to all those victims? I was not mutilated by bombings or burned by poisonous gas. Even the politically neutral Western medical care teams could not reach all the injured. Often, those afflicted died in agony. Or perhaps they still drag themselves along in mutilated lives even now. Many of the refugees who escaped Syria weren’t wounded per se, but who was I compared to them, either? I wasn’t country-less, or stuck in a refugee camp, or sent back to my own lethal country.
When doctors and nurses – or anyone for that matter – expressed how sorry they were for me, or how surprised they were that I could still be joyful, I had Syria eating away at the back of my mind.
During my stay in Casa Colina, I also heard about the electrical emergency in Florida. At that point in January 2017, the power failed in most of the state. There were too many hospital patients, and especially too many elderly people in nursing homes, for them to all be transferred to facilities that were still running. Many of them died from the heat. I looked around at my excellent hospital room. I myself had been destined for a nursing home, but some indomitable warriors (you know who you are and THANK YOU!) intervened to get me into Casa Colina. Casa is one of the best neurological rehab centers in California. (FYI, you’re very welcome for that statistic. I was fact checking it online and a pop up ad triggered a cluster of seizures. I was in my wheelchair for the rest of the day.) But anyway, back to my hospital room. I had snowy white sheets that were changed every day, plus lots of blankets from friends and family because MY room was freezing. I had great hospital food. My drugs came on time every four hours. Every four minutes would have been fantastic, but you get my drift 😉 Therapists dragged me and all my broken bones out of bed for therapy three times every day. That therapy part felt awful, but it made me what I am today. Compared to the poor, stifled nursing home residents in Florida, did I really suffer?
On a spiritual level, I think of all the people who have been murdered for their faith around the world. In my life experience, many doctors and nurses actually seem interested in what makes me joyful in the face of losing most of my life. On a practical level I do have to admit that I’ve undergone much mental and emotional loss, but not as much as people who have been abused. My family has suffered with me, but not as much as if I had died.
So did (and do!) I really suffer compared with all the traumatic experiences around the world? That’s a debatable question. To say “No”, would diminish the pain of many people who have been through something similar to what I’ve been through. Maybe they’ve been through less, but have been scarred by the emotional trauma more. To say “Yes” would disrespect the magnitude of any negative experience that is greater than my own. And there is a TON of pain that far exceeds my own.
If suffering is so impossible to nail down, then how do you know when you see real suffering? I think the answer lies in an analogy Ivan uses sometimes. When nurses check on you in the hospital, they always ask you to rate your pain on a scale of 1 to 10. We knew that I had an unusually high tolerance for pain even before the accident. So, after the accident, when a nurse came to give me heavy narcotics and I said I was only at 7 out of 10, what did the 7 really mean? If the nurse went on to the next patient, and that patient had an extremely low level of tolerance for pain, they might also say their pain level was at a 7. Maybe their 7 would only be a 2 on my scale. But the nurse would never argue and tell them that because I had said mine was a 7, theirs could only be a 2.
No. Each person‘s pain as is significant as their ability to tolerate it.
So I think that’s how we should measure suffering. Not on a global scale, which would be literally impossible, but rather on the amount of trauma a specific experience inflicts on a specific individual. I truly believe that there is no ” definition tail” to pin on a donkey named Suffering. Perhaps all we can say is that each person’s pain matters. It matters to them, it matters to God, and it should certainly matter to us. I hope this idea can open our hearts and our eyes to be on the lookout for pain around us, whether or not it measures up to our personal perception of real pain, That’s exactly how God approaches our pain, always has, and always will. (Jesus bore the punishment for our sins, and none of us could ever catch up to that level of suffering!) So maybe it’s better not to navel gaze at our pain, wondering if we’re the ones who’ve really suffered. Maybe it’s better to look outside ourselves and see someone else’s pain, without comparing them to us or anyone else. If you see someone hurting (and you will), take a minute and remind them that you see their pain, and that they matter. Mattering is truly the best medicine!
Ivan’s back at school! He is still super happy teaching at Valley Christian Schools, and I am still super thankful that he’s there. (I hope I get to write about him going back to school at VCS for many Augusts in the future!) I’d love to do one of those cool “Summer Summary” posts…except that y’all pretty much know everything. 😉 BUT I’ve seen so many moms do cute “back to school” posts for their kids that I decided to make one for Ivan, too. I most definitely am not Ivan’s mom. But that doesn’t mean I can’t make one. He is cute, after all…
Name: Ivan Christian
Favorite Movie: Lord of the Rings
Favorite Food: Anything with CHEESE. Or shrimp. Or both.
Other fun facts not usually seen on “Back to School Posts:” Ivan doesn’t just teach piano periods! He also teaches AP Music Theory, and co-teaches two choir classes. In case y’all got lost on the music theory part, it’s basically analyzing how composers “build” music so it sounds a certain way. I call it the “math” of music.
Last year we were nervous about how I would do “on my own” while Ivan was away at work. Mom filled in the gap during the fall by taking me to therapy twice a week and making up other short excursions. I was considerate enough to save my seizure hospitalizations for everyone’s Thanksgiving and Christmas breaks. (You’re welcome!) I graduated therapy in January, but Mom and Dad still took me out in the spring as I was able, and came to help me out at home when I couldn’t go out. They also both ran “seizure interference” so Ivan could stay at school as much as possible. We’d all imagined that this “back to school” transition would be a piece of cake compared to last fall’s, or this past spring’s for that matter. But our plans rarely work the way God’s do. A dramatic summer is leaving us nervous for the fall transition – again. But on the bright side, we already made it through one full year in spite of a theme park’s worth of ups and downs. I’m pretty sure we can make it through another. We’ve still got all the same ingredients in the recipe: Ivan, Mom, Dad, an understanding job, and a great church family. Best of all, we have the same God.
Ivan: Spouses are called to care for one another, but things get really interesting when a severe, life-threatening accident gets thrown into the mix. I was 23 when a man ran a red light and hit my wife at 40 mph as she was walking in a crosswalk (there was a security camera at the intersection). Grace was also 23. “But we were so young!” Is there ever an “appropriate” time to become a caregiver for one’s spouse? There is something wholesome and sacred about all husbands and wives who stay together and care for each other till the end. I pray that God will give me the privilege of taking care of Grace for decades to come. That being said, you don’t usually think of couples in their 20’s operating under a “victim-caregiver” dynamic. Grace and I are very aware that we are not the only newly married couple to face something unexpected and devastating. We share our story in the hope that whoever reads our words may be encouraged.
What is it like being a caregiver for your spouse? It’s hard. It’s hard because everyone has 24 hours in a day and a finite amount of energy with which to take care of the many things that need to be taken care of in a day. Usually the demands of work and family life are enough to leave people feeling exhausted. Adding serious medical needs doesn’t help. Somehow you have to keep being employed and keep meeting “normal” social and relational demands while also helping your spouse. The spouse is understandably unable to do as much work (professionally and at home) as before, so the caregiver is responsible to make up the difference.
In addition, the spouse being helped is aware that “if it weren’t for them” their spouse wouldn’t need to be a caregiver. This can create feelings of frustration both at the situation itself and its effect on the caregiver. The caregiver also needs to be sensitive about how to “cope” with the exhaustion and frustration arising from the situation, because it would be easy to inadvertently make the “victim” feel responsible (even though in our case Grace is 100% blameless for what happened).
Sometimes I feel like there is a train called the “train of life,” and a major accident has derailed it. But somehow the train is still expected to function “as usual” because “life goes on.” How do you get the train back on its rails?
You push it back on to the rails and then you push it until the engine slowly comes back to life. Then you keep pushing.
Why do all this? Sadly, many don’t. Many give up and leave because “this wasn’t what they signed up for.” And if we’re honest, that reason (or excuse) makes sense. Then how do we account for that voice that says, “That’s not how it should be! Stay for love…”
“No one has greater love than this, that someone would lay down his life for his friends.” John 15:13.
I never know when the next seizure will come. When they do inevitably come–because we can’t cocoon Grace in a life completely insulated from any chance encounters with light triggers or fatigue triggers–I have no power to make them stop. If I’m present with Grace and not at work or someplace else, I literally just sit there next to her and wait for the seizure(s) to stop. It feels completely helpless. People don’t like to feel helpless. But it’s part of my calling now to care for Grace.
There was a time last year when I worked many hours to make up for the income Grace lost because she could no longer work, and I was finishing my master’s degree, and I would come home, administer a blood-thinner shot in Grace’s arm because her knees were broken and she was stuck in a wheelchair and we didn’t want potentially fatal blood clots to form, then I would help Grace with her self-care, then I would clean her G-tube which had been infected and had developed pressure sores from being installed inappropriately, then I would sleep, wake up, repeat. But that was part of my calling to care for Grace.
Grace and I miss going to church (we hope we can go back to trying to go to church again, once Grace has rested up and recovered after our recent hospitalization). We miss the fact that she hasn’t been able to attend events at VCS or meet my students and coworkers. We miss the fact that (unlike many of our peers) we are not able to travel freely abroad, or even to Southern California, or even around town. Or eat out. Even watching TV sitcoms (Grace introduced me to Seinfeld a while back and my life hasn’t been the same since) is risky, because light triggers could come onscreen at any time (Grace has been triggered during Seinfeld episodes, fyi…). Movies are also risky. Walking outside our front door feels like leaving Rivendell to walk to Mordor. But even inside our apartment she’s not safe from triggers, so it’s not quite an elven sanctuary.
I’m rambling, but you get my point. Peace of mind is hard to come by. I would have crumbled long ago were it not for my Foundation. “On Christ the solid rock I stand, all other ground is sinking sand.”
“In Christ alone my hope is found,
He is my light, my strength, my song
This Cornerstone, this solid Ground
Firm through the fiercest drought and storm.
What heights of love, what depths of peace
When fears are stilled, when strivings cease
My Comforter, my All in All
Here in the love of Christ I stand.”
“Turn your eyes upon Jesus
Look full, in his wonderful face
And the things of earth will grow strangely dim
In the light of his glory and grace.”
Only God is strong enough, kind enough, patient enough, faithful enough, constant enough, to face life’s biggest challenges. I know I’m not. I pray that all of us would come to the only Source of true Life as difficulties keep coming our way. Our Shepherd walks with us through the darkest valleys…and leads us through into the light.
“Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever.” Psalm 23:6
Grace: Hi everyone! Our rollercoaster ride over the past few weeks reminded me of someone who’s never showed up on the blog: the man who hit me. The man who hit me and didn’t even say “I’m sorry.”
My first clear thought about this man came in the rehab hospital. The night nurse was putting me to bed, but she hesitated before pouring out some pills. “Are you mad?” she said. I thought she meant about the accident in general, so I gave her my standard reply. “Not really…I mean, how could I be mad? I’m alive when I should be dead!” She laughed. “No, not about that…are you mad at the guy who hit you?” That made me stop and think. (Thinking took a lot longer back then.) “No,” I said finally. “I think I just feel bad for him. I’d hate to live the rest of my life knowing I had done this.”
She probably thought I was drugged, but what I said was true. I still feel truly sorry for him. Ruining someone’s life is a terrible ghost to haunt you. I wouldn’t wish that on anyone. I don’t want that man to get hurt. (I don’t want him dead or hit by a car in case you’re wondering!) I definitely don’t want him to go to Hell.
So what do I want?
I’ve thought about this a lot and come up with two big wishes:
That he would encounter God through Jesus before the end of his life. Facing a just and angry God with the pain of our accident on his hands would be a terrifying, terrifying fate.
I don’t want him punished “for real” in this life or the next, but I would love to do one thing to him. I want to make him watch one critical day – just one day – of our post-accident lives. It could be me way back in ICU that first night when I was supposed to die. It could be me in therapy trying so hard to catch up to a bunch of amputee patients. It could be me in the hospital during any one of my stays in the past seven months, having seizure after seizure after seizure. I’d love for him to have to turn around and look Mom and Dad and Ivan in the eye during one of those moments and see their fear and pain and exhaustion. I’d love for him to be with us just one day and think “I did this.”
Yeah I have to admit it would feel pretty great if someone could make wish #2 come true. Thankfully for the man who hit me, they can’t. But my wish #1 is still my top wish for him. The best part is that it could come true. He really could find Jesus one day and be forgiven. But in the meantime, whatever happens…I still feel really, really sorry for him.
P.S. This is all I’m at liberty to share at the moment. There may be a Part 2 at some point in the future where we can share more. But for now, thanks for your patience!
Ivan: I won’t write too much for now, but I just wanted to add two things. First, there is a legal side to this accident that Grace and I can’t elaborate on just yet. However, Grace and I can say that we have received no settlement from the offending party and most likely will not. Second, as much pain as this person has caused us, and as great as his need for God’s forgiveness is, Grace and I are reminded that we also need God’s forgiveness for our sins. The Bible is clear that everyone needs forgiveness, but it also gives a clear path to forgiveness through Jesus. Thank you all for your love and support!
This is actually not a happy post, but I promise to end with a silly Monty Python clip so we all feel better. Hang in there!
Two Sundays ago I ate a Costco salad and got sick. Food poisoning is annoying but pretty low key in the grand scope of life…unless you’re me. An upset tummy led to a low grade fever…which led to a giant seizure spike. Over the course of the week I had 31 seizures. Breaking my previous record for number of seizures in one week felt pretty awful. But wait, there’s more!
This past Sunday I got much worse, at which point my family freaked out and drove me to the Redwood City ER. It’s 30 minutes away, but that’s the only Kaiser center in our area equipped to treat my type of case. I had 15 seizures before I got checked into the ER, and fit in 23 more before I made it to my neuro hospital room that night. In case you’re bad at math (which I totally am!), that’s 38 seizures in one day. Which makes 69 for the whole week. Ouch.
The next morning (Monday) the neurologist decided to run a 24-hour EEG to see if anything had changed in my brain since my last Redwood City stay in December. At this point I was much more stable. Being hooked up to an EEG machine makes me look like this:
I had a few seizures Monday, but at least I was already feeling better.
That basically summarizes my Monday. On Tuesday afternoon the neurologist analyzed my EEG Tuesday and didn’t read any changes since my December EEG. That’s actually a praise since we don’t want anything else to be wrong with my brain. But we also know that food poisoning is really, really terrible for me, since it seems to mess with how my body absorbs my regular seizure meds.
PS. I always think I’m done with hospital posts, but then…?
PPS. Sorry Costco! I still ❤ you mostly. Just not your salads.