Wellness Shots

 

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First time I got to see Ivan in action!

 

Hello, blogging family! I had no inkling of the wave of support that was headed my way after my last post. All I can say is, thank you for being some real walkers! Or readers, rather. God uses you all to bless me more than you know. 🙂

“Wellness” is a funny word. It shows up in magazines, TV shows, podcasts, and – of course – your doctor’s office.  It also seems to mean something different almost everywhere you find it. Well, I looked it up this morning, and the primary definition I found was: “the quality or state of being healthy in body and mind, especially as the result of deliberate effort.”

These past two weeks have been wellness weeks.

You all joined me in celebrating just how healthy my mind has remained over the past two years, and your enthusiasm over my online degree reinforced what a loving internet community God has created for me since my outdoor activities remain…umm…limited.

God timed your response perfectly, because the next day I was in my neurologist’s office getting 16 shots in various parts of my head to try to break the migraine. This is no longer a recovery blog, but it’s hard to write about wellness and ignore 16 shots in the head. Just for some perspective, I’ve had a continuous migraine for 45 days now. I get to take pain meds around 3 times a week, but the rest of the days are…au natural. This is the only reason why I agreed to head injections. What they did not tell me ahead of time was the exact number of injections. Or on which parts of my head they would be given. (I’ll spare you those details.) No, they just started injecting and stopped 16 shots later. The situation struck me as hilarious while it was happening, which was God’s way of sparing me a public meltdown, but I admit to crying like a baby later that night. Also, I still have a migraine.

School and shots aside, Ivan and I made one more push for post-graduation wellness last weekend. The VCS Conservatory had a high school music retreat in La Honda, and I was able to tag along and hang out in the lodge. This was one of those rare opportunities that actually met my long list of do’s and don’ts. I need lots of rest and quiet time. Unfamiliar lights are a no-no, but noise is not my friend either now that I have a migraine. No worries! It’s a camp, so kids and teachers are in rehearsals almost all the time. Oh, and did I mention that La Honda is in the mountains? Natural light and stillness are the order of the day. And thus, I packed my duffle bag. (Although at that point I still thought the shots would work.)

The migraine shots underwhelmed, but La Honda was a wellness shot that did its job. I grew up on large helpings of fresh air and nature, and being able to step in and out of a cabin without fearing for the next seizure trigger probably added some years back to my life. Or at least emotional life. Noise and non-natural lights limited me to five minute reconnaissance chunks, but I fit in enough of those to finally see my husband at work. I also got to meet some of his pretty cool kids. In addition to Vivaldi’s Gloria, they learned that he was not, in fact, married to the Bride of Frankenstein. I think that may be a common misperception. How did I spend the rest of my time at camp? Long walks in the fresh air and natural light, naps (of course), and…lots and lots of writing. (More on the writing part to come later.)

But what about spiritual wellness? Church has been out of my reach for a while now. I thought camp might be a relatively safe way to challenge my old assumptions, but unfortunately I found those assumptions still held true. According to my iPhone, I lasted less than 10 minutes at an open-air chapel before I got nauseated and had to leave. Crowds, noise, and lights, my friends. But college isn’t the only thing that’s gone online. Hillside Church recently started a women’s Bible study that meets online once a week, and it’s been refreshing to connect spiritually in a manageable venue. I can honestly say that if it weren’t for going to school online for the past 14 months, I would have been too nervous and confused to know where to begin. Thank you, God, and thank you, Hillside!

I haven’t gotten my flu shot yet, but I’ve gotten plenty of other wellness shots over the past 14 days. The latest one being this blog post. I had time to write because I was awakened early (as in, think earlier than 5 am “early”), by Friend Migraine. But how could contemplating God’s blessings not count as a wellness shot? “Wellness” may be a subjective word, but I think the dictionary nailed the last part of its definition: “especially as the result of deliberate effort.” Wellness isn’t just something that happens to you. It’s a choice you make for yourself. May God give us strength to keep making healthy choices!

 

 

A Picture and a Thousand Words

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The coffee was strong with this one…

They say a picture is worth a thousand words. I’ll excuse the time lapse since my last post by saying abbreviated word counts are often in readers’ best interests…and therefore I’ve been waiting on a picture to help tell my story.  Hopefully this photo makes the words I have typed here worth reading.

Yes, folks, I did it. I finished my Bachelor of Arts in English. Although I mentioned taking online courses in a couple of earlier posts, I purposely deferred mentioning the actual degree until my last post because I wanted to complete all the requirements before going public with my long-term goal. Even passing a couple of classes would have been a major  accomplishment given the past 2 1/2 years, but I was hesitant to broadcast my attempt until I was certain I would graduate. This diploma represents more than just another bachelor’s degree, however. It’s the first significant goal I’ve achieved since my accident. It is also a very specific demonstration of God’s protection three years ago. My verbal IQ is one of the few cognitive functions to remain unaltered after the traumatic brain injury.  Said unimpaired verbal IQ is also pretty much the only explanation for how I earned that diploma, with “summa cum laude” stamped neatly on the lower right hand corner, while the rest of my brain went haywire.

I’m not sure why God is doing what He’s doing, but I am grateful that He allowed me to come this far in a subject I love. I’m also curious to explore why He protected the words in my brain and to discover what His ultimate purpose for all those words will be!

For those of you who are still interested in a thousand words, feel free to check out my senior project: If I Should Die. CBU typically requires English majors to write a research paper as their final degree requirement, but I was allowed to write a creative nonfiction piece instead. I was given this choice for a couple of reasons…one of which is that I hope to begin a book about our accident in the next few years. My senior project narrates the first day of the accident and is a practice run for what the beginning of that book might look like. Feel free to check it out! But I do owe you one disclaimer: it is way over a thousand words.

 

Lighting my Shadows

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Much Shakespeare hath been read.

My last post ended with the word “thrive.” A different writer might substitute “die” for “thrive” since unsolved neurological disorders have kept me indoors for the last 18 months. But I can assure you that my word choice was no mistake. While God may have limited my tolerance to most things connected to a battery or electrical socket, He’s still provided a special kind of light to brighten my days at home.

Ivan and my parents report that one of the questions they hear most frequently is “What does she do all day?” That’s fair enough, given that I live with most of our apartment lights switched off and rarely venture into the great outdoors. But I also can’t just sit staring at the wall all day, and I most certainly never have. I can and have been taking online college courses.

Two years ago my occupational therapist suggested I take an online course at a community college. The purpose was twofold: I needed more structure in my day, and she needed to evaluate my cognitive ability. My goal was to keep up with homework assignments and score a C or higher. I enrolled in a literature class since literary translation had been one of my minors and…let’s just say I scored higher than a C. We also discovered schoolwork was easier on my brain than social activities because I could take a break the moment I began to feel tired, whereas long conversations required more energy and endurance. Keeping my brain well-rested became essential as my seizures grew more and more serious.

When therapy and the online course ended around the same time, both Ivan and I agreed that I should keep taking classes. Not only had I fallen back in love with literature, but my need to stay occupied was even greater now that leaving home was almost a thing of the past.

But I never do anything by halves.

Not only did I keep taking classes, but I also convinced Ivan to let me enroll in an actual English degree program at our old school, California Baptist University. If I was going to keep taking classes in a subject I loved, why not work toward a larger goal? I’d already completed all my general education requirements during my first bachelor’s degree, so it was only a matter of more literature courses – and some creative writing, too!

Ivan doubted the sanity of my venture at its outset but graciously agreed to a trial quarter. When I got A’s, he told me to keep running. I can honestly say that school became my lifeline as the months slid by. It might have been true that I couldn’t do more than twenty minutes of schoolwork at a time. It might also have been true that those assignments were at the university level, and that I initially didn’t tell the faculty about my brain injury since I didn’t want pity grades. But it was absolutely, 100% true that those twenty minute chunks added up to success, and that they lifted my mood, filled my days, and expanded my intellect. Yes, in spite of being a prisoner in my own apartment, I was thriving.

And then the big seizures hit.

Listening to podcasts, keeping up with reading assignments, and writing papers became a lot less feasible once I had to sleep for hours after every seizure. I suddenly felt like I was earning a college degree in time management as well as a college degree in English. Thankfully my time at Stanford reduced the severity of my actual seizures, but the migraine disorder made attempting any sort of schoolwork even more daunting. Very. Very. Long. Breaks.

These past quarters would have seemed like the logical time to quit if ever there was one. But the truth is that God has brought something into my life that I love passionately. I hope it’s obvious how much I love writing. After all, I have maintained a blog for 2 1/2 years now! But I love the process of school and studying literature just as much. Physical lights may be fading from my life, and I’m not sure how they’ll come back, but God’s given me a mental and creative light that thrives in my (literally) darkest shadows. I haven’t felt this fulfilled since the last time I played a violin concerto.

Speaking of writing, I’ll be writing more in addition to the blog now that I’m done with Stanford. More coming later…

 

A New Way to Walk

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Ivan will be walking with us, too!

Hello, everyone! It feels amazing to be back on the blog again…I definitely missed y’all over the summer, but my brain also definitely needed a breather while we were at Stanford. 🙂

Now that we’re reunited, I’d like to lead us down a bit of a different path. Ivan and I started this blog in early 2017 believing it would be a short-term continuation of his initial Facebook updates. (For those of you who joined us later in our journey, Ivan began posting Facebook updates on my condition within the first day or so after the accident.) Your amazing support and enthusiasm transformed a short-term experiment into a long-term staple of my recovery and…here we are today! I still can’t believe we’re approaching our third “accidentiversary.”

Every recovery is different, and mine seems to have ended with seizures and long-term migraines. I’ve seen literally the best neurologists around (praise God!), and am grateful for all they’ve done for me. Remember how y’all were praying that I wouldn’t have seizures where I almost stop breathing? Well, God used Stanford to answer that prayer and I don’t have seizures like that anymore. Why I ended the summer with another bizarre brain scenario (2 and 3 week long migraines), I will never comprehend, but at least I was seeing highly trained neuroscientists when it developed! Does it feel unfair to be limited by severe neurological conditions after all this time? Absolutely. But numberless other people around the globe are also limited by “unfair” health problems. And my very good God knows why.

My very good God has also given me a blog with a fantastic readership that has walked with me for over 2 1/2 years! My neurological conditions are so complex that I will probably always have occasional complications or developments, so Ivan and I will continue sharing updates as needed. But for the most part, I want to write less as a patient than as a recovered twenty-six year-old. I’d like to invite you to continue walking with me as I take on this new writer-ship to explore the humor and the challenges God sends my way as I inhabit a world that wasn’t exactly custom made just for me.

So, with this new angle in mind: How did I thrive while being trapped inside a 700 square foot apartment for the past 7 months? How am I thriving now? And yes, I used the word “thrive.” Stay tuned! 🙂

 

 

Life after Stanford

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Enjoying the sun at Stanford!

 

Hello everyone! Happy mid-August. Grace and I have some updates for you all, so here we go!

Grace has finished her appointments with the specialist at Stanford. We’re grateful that a new medication from the Stanford doctor has improved Grace’s seizures so that when she encounters a light trigger, her body no longer goes completely limp. Her left hand still locks up though.

However, starting around May Grace has experienced migraines that come regularly after seizures. At worst these migraines have lasted 15 days, during which time Grace experiences intense pain, light and sound sensitivity, and nausea, despite multiple migraine medicines. Since these migraines can take days before they subside, every new seizure that occurs during a migraine prolongs the total migraine length.

Grace’s doctor at Stanford has recommended that we connect with further specialists back at Kaiser, so our relationship with members of the medical community continues to blossom. Doctors still don’t know exactly what’s causing Grace’s brain to do what it does. The plan is to continue to gather data in the hopes of finding a treatment plan that can address Grace’s sensitivity to light triggers.

So thank you for continuing to pray for us! God uses you all to sustain us on our journey. He is always able to do for His children more than any of us can ever imagine. He is always greater than anything this world can throw at us. Thank you all and to God be the glory!

Do You Trust Me?

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Stanford sunshine was a winner at our last visit! (3 weeks ago)

“Did you know your Dad mentioned your blog in the sermon on Sunday? It was really emotional.”

I literally almost rolled my eyes, but not for the reason you might suspect. Yes, Anna and I did develop a holy terror of certain disconcerting situations while growing up as pastor’s kids. Number One was being referenced in any way whatsoever from the pulpit, but others included sitting near the front row, occasionally having to wear dresses when other kids our age showed up in jeans, and similar minor travesties. Thankfully we’ve grown out of most of those, including the pulpit thing (I think?).

But this past Thursday I suppressed the eye-roll not out of pastor’s kid’s exasperation, but simply because of where I was, what I was, and who I was. I was sitting across from Mom on an Urgent Care exam table with an IV pumping an extremely strong anti-migraine drug into my arm. I’d morphed from my “normal” neurological mystery into a neurological mystery in the middle of a drug-resistant migraine. At the moment Mom asked her question, the migraine had already lasted four days. Who was I? Well, I’d been in unmanageable pain for four days, and I was extremely out of practice facing pain graciously. Mom was sitting with me so that Ivan (my superhuman Energizer Bunny) could “take a break” from dealing with me for a couple of hours. Yeah. Not blog worthy. Absolutely not sermon worthy.

“Umm…no. What was it about?”

“He was talking about all things working together for good. You wrote this one post years ago where you said you could see God using your accident for His glory, and that you wouldn’t change a thing.”

Honestly, I felt like someone had just slapped me in the face. It’s one thing to survive extreme pain in most parts of your body, but extreme pain behind your left eye takes it to a whole new level. Then add in the pain of light, the pain of sound, the inability to sleep, the nausea. At that moment I wanted to change a whole lot of things about everything. The worst of it was I knew that I was not making life a cakewalk for my family, either.

Just that morning I’d found myself begging God to reconsider whether my situation was working out for that Romans 8:28 best or not: “When is it enough? Isn’t it enough that I’m still in brain therapy? That I’m still stuck at home? That I don’t even have brain power to write anymore? Why this on top of everything else?” And now Mom was sitting across from me reminding me that I’d given public testimony that I was SO confident that all things DO serve God’s ultimately good purposes that I wouldn’t change anything about my accident.

It was almost like God was testing me: “Do you trust Me? Or don’t you?”

I wish this post had a better immediate ending than it does. The migraine ended up lasting 10 days. Urgent Care didn’t work. The ER didn’t work. Heavy duty drugs didn’t work. All the “right” things that you’re supposed to do at home didn’t work. The only light at the end of the tunnel is that my neuroscience team was out of town for part of the migraine, but now that they’re back we’ll have a better plan moving forward. So I’m not planning a migraine encore of that magnitude! (Lord-willing 🙂 )

Writing blog posts is not one of the “right” things I’m supposed to be doing at home to help my brain recover from its latest setback.

BUT I wanted to write this one anyway to remind y’all that Romans 8:28 is not a truism. I listened to Dad’s sermon when I got home from the hospital and am still realizing how easy it is to read something in morning devotions, or listen to it on Sundays….or in my case, blog about it…but how humanly impossible it is to convince yourself that you actually believe it while you’re in incredible pain. If I wrote anything of the kind three years ago it was only by God’s grace, and the past two weeks have been a sobering reminder of the gift that faith is. We talk of peace that passes all understanding, but when you’re in intense pain, faith passes all understanding too.

“And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.” ~ Romans 8:28

Yes, He does.

 

 

 

Summer Summary

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Current mood…

 

Hi everyone, Happy Summer Break! At least for students and teachers, that is 🙂

I know we haven’t posted for a while, and this is more of an update than a post, but we wanted to let you know that we haven’t forgotten about you! Grace is still working with her doctor at Stanford, and we are still waiting for more definite news to share with you on that front. The process has been grueling for Grace recently, so we still really appreciate all your prayers and support! It looks like she will finish around mid-August, and we will keep you updated as we can until then. Thank you for walking faithfully with us, we can’t tell you how much that means. God bless you all!

“Everything He Does…”

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Photo op at Stanford!

“Everything He does reveals His glory and majesty. His righteousness never fails.” (Psalm 111: 3).

Hello, blogging family! May has been a “milestone month” for us the past two years, so I wanted to pause and commemorate past blessings with a “thank you” note to the Lord, and also to you as our prayer partners.  🙂

This month marks…

  • Two years since Ivan graduated with a Master of Music in Piano Performance and Music Composition. He finished his degrees on schedule even though his last semester was spent working overtime, hunting for jobs, and team-caregiving with Mom, in addition to keeping up with school.
  • Two years since I turned in my cane and graduated to walking unassisted. The journey was painful at times, but SO worth it. Thanks to God and my therapy team, I finished re-learning to walk six months ahead of schedule.
  • Two years since we packed our bags and made our way to San Jose! Many thanks to our Riverside friends who got us packed and loaded, and a GIANT shout out to Dad who sacrificed his Memorial Day weekend to drive the moving truck from Riverside to San Jose. The truck’s air conditioner wasn’t very cooperative and Central CA is like an oven, if you’ve never made that trek.
  • Two years since Ivan signed his contract with Vally Christian. We were grateful for any job at that point, much less a dream job!
  • One year since I went back to school to study English and creative writing. My therapy goal was to see if I had the cognitive focus/learning retention to pass a class with at least a “C.” It’s a struggle with everything else we’re up against, but I’m still in school and still passing classes! This experiment is also an example of God providing way in advance. We had no idea I’d return to being housebound and unable to handle a lot of visitors, but reading lots of books and setting daily goals is my lifeline to staying sane and happy!
  • Around one year since Ivan began his doctorate. We thought he’d need to shelve such an enormous undertaking until our lives evened out, but God provided the right opportunity, the right means, and just the right amount of endurance to jump in and stay in. Turning in papers at midnight in the emergency room, anyone?

This list is only a flyover of the two amazing Mays we’ve had thus far, and I’m positive we’ll have more to add to our “thank you” list next year. We’re almost half way through my time at Stanford, and although we don’t have updates to share just yet, I’m thankful for how hard my family worked to get me there – and the fact that somehow we were assigned to the best doctor they have. Only in God’s world!

Milestone Mays would also not be possible without each and every one of you. Your commitment to cover us with prayer is an  instrument of grace in our lives,  and we’re unbelievably blessed by the support we constantly receive. Thank you for walking for us and with us every step of the way!

 

Inching Forward at Stanford

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Mom is my designated Stanford driver ❤

 

Hi Everyone! It’s about time for an update on our journey at Stanford. My biggest blessing so far is that I’m being followed by one of the top research scientists for my particular neurological disorder. If anyone can come up with a solution for my seizures, it will be her!

So far, my new doctor has just been collecting data about the way my brain responds to the environment. She seems to think my condition doesn’t match currently available scientific data, but the good news is we’re still early on in the diagnosis process. As for me, I’m just grateful that I finally made it into the Stanford clinic and that God has placed me in the hands of the literally THE best possible doctor.

As you continue to walk with us, we’d love prayer for an accurate diagnosis and treatment plan, as well as strength for our daily challenges. We’re still dealing with the same frequency and severity of seizures as we were earlier in the year, and while Mom, Dad, and Ivan are doing their best as caregivers, we’d all be grateful for some relief. I always joke that they’re the ones who suffer most from my seizures. While I hate having them, I go to sleep right after they finish and usually sleep for a few hours before I try getting out of bed. In contrast, Mom, Dad, and Ivan have to watch me have the seizure, make sure I’m safe in bed afterwards, watch over me while I’m sleeping, and then help me after I get up. Their job is definitely more difficult than mine!

As always, thanks for your prayers, and we’ll let you know as we have more information. 🙂

 

 

The Man Who Hit Me (Part 2)

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Grace sent me this picture with our (then) kitten about an hour before the accident.

 

Ivan: Hi all! Happy Wednesday. This post will deal with events going back to the moment of the accident over two years ago, but first a brief update from the present: Grace is continuing to work with her new doctor at Stanford. Her doctor is gathering more information and working on putting together what we hope will be a viable treatment plan. Thank you for continuing to pray for us!

Now, for the main part of this post. The “me” in the title refers to Grace, and “Part 2” refers to our earlier post, in which we introduced a key character in our accident narrative: the driver who ran a red light on Saturday, December 3, 2016, and changed our lives forever.

I was not with Grace that afternoon as she waited for her crosswalk light to turn green and proceeded to step into the crosswalk to cross Magnolia Avenue in Riverside, CA. She had planned to get some food at Subway before meeting me to go a Christmas concert where she would play later that evening. When her light turned green, Grace took a few steps into the crosswalk as Mr. Driver (not his real name) failed to stop his car at his red light.

The information we have regarding this accident comes from video footage from a traffic camera at that intersection. This camera recorded the fact that, at the moment of impact, Grace’s head crashed through the car’s windshield, giving her a skull fracture at the back of her head; her body landed on the hood of the car. Mr. Driver stopped for a few seconds, moved his car forward a few yards, then braked so that Grace’s body fell on the road. Then he pulled over to the curb, where the police and paramedics eventually found him.

Grace’s accident was not a hit and run.

The Riverside Police Department was able to give me copies of Mr. Driver’s information. Grace and I know his name and where he lived at the time. Presumably, he has access to Grace’s information. We have never once heard from him since the time of the accident, even though he lived around the corner from our apartment complex.

In the forthcoming days and weeks I learned from a police detective investigating our case that, in the state of California, drivers who hit pedestrians are not charged criminally unless the pedestrian dies. Therefore, despite the severity of Grace’s injuries and the irreparable damage done to her quality of life, Mr. Driver has only been financially and legally accountable for his driver insurance’s minimal policy limit, and perhaps a ticket for running a red light.

God has been gracious to us in the time since the accident. He has always provided for our needs, not least through the tangible actions of many people who have sacrificially given of themselves to help us. Grace and I thank God for all of you!

At the same time, the fact remains that our accident serves to demonstrate how hope for ultimate justice should not be placed in human institutions. We are all flawed; our attempts at establishing a just society are also flawed. Yet God’s grace remains.

It would be an endless undertaking to enumerate the ways in which God makes His love and unmerited blessings known to us. Among these, Grace and I are thankful that God has chosen to allow Grace more time on earth; that He has given us family and friends who have more than supported us throughout our journey; that He brought into our lives attorneys who worked with us selflessly and patiently; that He himself never changes.

Our hope and prayer is that those of us who know God will continue to seek Him more and more through whatever He chooses to send our way, and that those who do not yet know Him would come to understand who He is and what He has done. Mr. Driver, Grace and I pray these things for you.

In the words of our Lord Jesus: “In this world you will have trouble. But take heart! I have overcome the world.”