Finally! Rest for the Weary

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That time I had strep throat and played Sibelius

 

Today I took two naps. I would usually feel extremely guilty about this, since even after the accident I’ve felt like my number one goal was to do the “old me” ASAP. My last post shared how my first attempt at diving back into closer (notice how I said “closer”!) to a 25-year old activity level wasn’t working out so well.

Just to recap, within the space of two weeks Ivan had taken me to the Perlman concert, we’d tried go go visit his parents in Concord, we’d watched the cat and the condo while my family were in Europe, I’d gone out with some friends, and I’d still kept up with therapy maintenance and chores at home. Oh, and tried church. I admit that’s not quite up to what you might expect for someone my age, but it’s a whole lot closer than what I’ve attempted so far.

And then I relapsed into the worst seizure frequency since March. Not so good. Since I woke up having seizures one day last week without a light trigger, my doctor decided that fatigue in and of itself was a trigger (we’d just thought that it lowered my resistance to light triggers but wasn’t its own trigger). So, now I’m on an imposed rest streak until we get back to our goal of 1-2 seizures a week.

I hate resting. When I was young, Mom often had to make me lie down and rest when I was sick – especially when violin and school were involved. One time I pushed through soloing with an orchestra and attending the post-concert reception while I was sick…and then was diagnosed with strep throat the next day. I feel like I was born doing things. And I’ve developed this mindset where I have to be doing stuff (usually introverted stuff like reading or writing or music, but still stuff) to be happy. Doing stuff wears out any brain, but now especially mine.

One nap a day has been necessary since I did have two strokes, but two naps a day feels decadent and a waste of time. I mean, I could be hanging with Ivan, reading, playing with Daisy, practicing Spanish. The old me would have been outraged at such a waste of time.

I think God is teaching me two things: 1) is to be kinder to myself and not believe that my worth is solely based on what (or how many whats!) I can produce in a day, and 2) is to be much, much gentler in how I think about other people. I did, and unfortunately do, typically assume other people should be just like me. As in, if I can do this much in a day  (especially if the disabled me somehow grinds out this much in a day), so should everyone else. The truth is I don’t know everyone else. I don’t know everything they’re going through right now. I don’t know everything they’ve gone through before. I obviously don’t have a job, and I have no idea what some of those super stressful jobs (or any job with kids!) can take out of a person. I really have no idea.

So if I have to stop and take two naps a day and limit all my other activities to twenty minute chunks, fine. And for everyone else who stops and has “nothing” time occasionally just to take care of yourself, I think that’s fine too.

Solo in San Jose

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Haha, I WISH we were that cool…

This weekend Mom, Dad, and Anna return from Europe. Anna started saving up for the trip last year as a post-graduation extravaganza and I’m SO glad she (and Mom and Dad) ventured forth. She totally deserves her first time “abroad.” 🙂

This trip was a big step for all of us since Ivan and I haven’t been solo since last August. Honestly, it probably wasn’t safe for us to even think about testing our “solo” skills until mid-April. Praise God that all these dates lined up at the last minute! The Europe story is copyrighted to Mom, Dad, and Anna, but I CAN tell y’all how our solo experiment turned out.

What we tried: Both of us dealt with schedule changes and extra responsibility (Mom and Dad have a condo and a cat), Ivan still worked during Week 1 of Europe, and I threw in some extra outings since it’s June and who doesn’t want early-summer fun?

What actually happened: We saw some interesting epileptic and TBI developments with the raised activity level. This felt weird at first, but I think God sent it early so we can plan for a fun AND safe summer. Here’s a breakdown of what we saw.

  • Epilepsy: My seizure frequency went way high (I even started clustering again), since fatigue makes my brain more susceptible to triggers. We still made it to church one week out of two (any church is a yay!), but we had to turn around on our way to visit Ivan’s family since I started having seizures on the freeway (yikes for everyone involved).
  • Traumatic Brain Injury (TBI): This is one of those things I always forget to plan for until it starts acting up, but unfortunately TBI also gets irritated by over-activity. There were a few days in there when I reverted back to some REALLY old deficits…usually because I couldn’t remember what we were supposed to do that day, much less figure out the order we should do it in. I ended up staying in the car for some of our outings, and got so noise-sensitive again that I wore earplugs to go feed my parents’ cat. That’s when ya know…

We certainly had our share of fun moments, though! Ivan got some extra chill time with my parents’ grand piano, I met up with a couple of church friends during some of my good days, and Ivan and I inaugurated the first swim of the summer. For the record, I can swim just as well as I did before the accident. (Including longer/faster than some people who shall remain nameless.)

Now what?? We’re looking forward to a great summer. 🙂 Thankfully we have a heads-up to count in lots of rest days, too, since happy brain = happy all of us. Quality is always better than quantity…and you can bet we’re aiming pretty high on the “quality” level.

As always, Ivan wins a gold medal for keeping up with me.

Update and Thoughts

 

 

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Daisy Mae makes the days brighter!

 

Hi all, long time no see! Time for a quick update and some thoughts. Recently we’ve had a higher number of seizures, which is always difficult to deal with. It’s hard for Grace to go through that, and it’s hard for me to watch her go through that. But she keeps battling, and I’ll keep trying to help her as best as I can.

I once heard that difficult times can either drive people away from God or point them toward Him. For my part (and Grace’s), I have come to rely on God more and more as trials keep coming. A year and a half ago, when the accident happened, I learned very quickly what it felt like to not be “in control.” So many of the things we usually take for granted—abilities, opportunities, time, energy, and other resources—are actually gifts from God which are His to give and take away. In fact, it’s all His to give or take away. We are merely stewards.

I have also realized more and more how transient our life on earth is. Man is but a breath, here today and gone tomorrow; eternity is long. Selfishly, I almost wish that Grace and I could be in Heaven already. But I am reminded that God has a purpose for every person during their earthly journey: namely, to enjoy and glorify Him and help others discover Him for themselves! How amazing is it that that is God’s ultimate desire—He loves us that much!

So we persevere! Grace and I want you all to know that we are always grateful for your love, prayers, and support, and that we pray for you all too, as much as we are able. All of us bear burdens of varying sorts and daily encounter people carrying their own loads. But “Praise be to the Lord, to God our Savior, who daily bears our burdens.” (Psalm 68:19)

P.S.: I want to specifically thank my family, my parents and two brothers, for their support for me and Grace throughout the past year and a half. They have prayed for us unceasingly, and I know I can always turn to them for love and support. Back in December 2016, my dad spent multiple nights in the hospital staying up all night to watch Grace so that I could get some rest. He himself had to pass other nights trying to “sleep” on hospital lobby chairs. My brother Eric drove down to Riverside from Fresno the day right after the accident and encouraged me continually. Mom, Dad, Eric and Joey, thank you, I love you all, God bless you always!

Life after Itzhak…

 

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And there ya have it, folks!

It would be super cool to write about Itzhak Perlman every week. Alas, such is not my life. Changing the subject…

Dealing with my final epilepsy prognosis is convoluted. Most personal pondering has taken place on the treadmill since there’s NOTHING to do except move my legs, but that’s beside the point. We’ve faced a lot of trials in the past 18 months and this one’s bugged me and Ivan more than many…probably because it’s permanent. We’ve received many loving admonitions recently: everything from “God often uses doctors to give us His final answer” to “Just keep praying for a miracle!”…and some suggestions that fall in between.

My heart naturally gravitated to the first opinion but I felt guilty whenever the miracle suggestion came up. Was it wrong to “stuff” God into a medical box? But He did also create medicine. I didn’t have a good answer.

Today God showed me that even if both sides are plausible, neither is the final answer. It takes two stories to explain.

First, we find a beautiful story in John 9 about Jesus healing a 40-year-old man who was blind from birth. It would be great if you look it up, but if not here’s the Cliff Notes edition 🙂 . I’m sure the blind man resigned himself to being blind decades earlier, and then wham! He could see. Jesus healed him but the crowd was so thick the man didn’t see who had done it. A couple of days later, though, Jesus found the man. After explaining He had healed him, Jesus gave a simple command: “Follow Me.”

Pretty inspirational for the miracle side, huh? But there’s also a darker story too.

In John 21 (Cliff Notes again) Peter is walking and talking with Jesus and promises to keep following Him even after Jesus returns to heaven. Jesus responds with: “Will you really do that? If you do, it involves the same kind of death I died.” I think Peter was pretty dismayed since he turned around and pointed to another disciple. “What about him?” Misery loves company. But Jesus didn’t go down that rabbit trail. “Even if that man lived forever, it wouldn’t matter. You follow me.” For the record, Peter did…and he was later crucified for it.

As much as one story is glorious and the other unsettling, the outcome isn’t the point of either. The point is Jesus wants followers. I’m pretty sure I can rule out crucifixion since most countries don’t do that, but I can’t rule out either a happy ending or a sad one. I also shouldn’t waste time fixating on which one I’ll get. Whether or not my epilepsy changes, my (and every believer’s) job is to follow Jesus no matter what. I need a whole lot of spiritual help getting better at that. And I still have a whole lifetime (and prayer lifetime) to work on that…seizures or not.

Seeing my Superstar…aka Itzhak Perlman

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FINALLY!!!!!!!!!!

Do you remember who you wanted to be when you were 9 years old? Superman? Barbie? I’m not sure what age bracket you fall in so I’ll leave it at that. Honestly, I don’t even know who kids my own age wanted to be. I was already swimming around “under the sea” with my violin. I was too busy to wonder who the kids “on land” liked. But I DEFINITELY knew who I wanted to be. I wanted to be Itzhak Perlman, perhaps the most accomplished violinist of our time. Please tell me you’ve heard of him. Even if not, you’ve definitely heard him play if you ever watched Schindler’s List. My awesome early violin teacher (Shout out to Beth Elliott ❤ ) lent me a VHS of him playing a concert when I was 9, and I was hooked. Unfortunately YouTube and iTunes didn’t exist, but I scrounged around to borrow CDs of him whenever I could.

My fixation sparked a quest to figure out how to  be just like him. Obviously, step 1 was to go to Juilliard. I knew he taught violin there. When I was 10, I looked up their audition requirements and made a list of all the pieces I needed to learn to audition. I checked them off one by one as the years passed. Step 2 was to go to a real concert and hear him in person. Mr. Perlman finally scheduled a concert in our area when I was 13-ish. He sells out everywhere, but my middle school violin teacher came to the rescue (thanks, Yuliya Smead! ❤ ).  Somehow Mom bought 2 tickets, and I was beyond myself with excitement. Until he canceled the concert. He’d experienced a death in the family so it was impossible to be angry. But I knew I probably wouldn’t see him again unless I left Wisconsin (very rarely do famous classical violinists book tour stops there).

Fast-forward to my time at Eastman. ( It’s a rival school to Juilliard.) When I was 16, I’d found an Eastman professor whom I admired so much that I had to learn from him, whatever it cost. But I hoped I’d still find a way to Itzhak Perlman, too. Sure enough, he made a visit during my freshman year. That concert made much more sense than the Wisconsin one since Eastman is such a well-known music school. My dream would come true this time for sure! Nope. His tickets started at $90. The box office workers barely concealed their contempt for all my questions. Was there a student rate? No. What about rush tickets? No. Could I hang around just in case someone no-showed? The lady’s glare told me it was time to go. Insult was added to my injury since Mr. Perlman performed in Kodak Theater. I played school orchestra rehearsals there every single day, and concerts once a month too. Now he was on that very stage, shining under the same warm golden stage lights, while I was shivering in the cold marble hall outside. The marble was sound-proof.

Seven years later, I live in San Jose. Can you guess who just played with the San Francisco Symphony? Can you guess who went? Yes and Yes!!! This was perhaps one of the most ill-advised gambles we’ve made so far, but I just HAD to go. I’d known about the concert since last fall, and been saving and planning ever since. You’d think the epilepsy explosion would have dissuaded me, but no. I didn’t care how much medication, blood tests, whatever. I was going to get better by May so I could go. A semi-unbalanced obsession with that concert tantalized – but probably also motivated – me as I fought through another brutal wave of recovery. Discovering that we’d reached the end of the medication road crushed some goals for me.  But I was going to get to that concert somehow. Playing my own concerts got taken from me, but there was no way that Perlman performance was going anywhere. I didn’t even care how many seizures I might have right as Ivan rolled my travel chair into the concert hall. Itzhak or bust!

So what happened?? Yes, I had a regrettably large number of seizures in the lobby, yes Ivan gave me the rescue drug, and yes, Ivan wanted us to go home. I didn’t care. 16 years of waiting was enough. An usher helped Ivan wheel me into my handicap spot and the lights went down. Mr. Perlman rolled out – in a wheelchair. I knew he had health problems throughout his life, but I wasn’t sure how often he performed in a wheelchair. His vulnerable entrance sent shivers down my spine given how hard I’d struggled just to get in the hall that afternoon. Mr. Perlman’s first piece was the perfection I’d imagined it would be. And then my heart skipped a giant beat. He was conducting the second piece himself, but I’d assumed he would stay in his chair. Not so. He turned to the regular conducting podium. That podium was almost four feet high, complete with large steps to reach the music stand on top. Mr. Perlman dragged himself upright so unsteadily that I wondered if he’d fall then and there. Orchestra members flinched…and I think everyone in the audience wanted someone, anyone to lend him a hand. Except for Mr. Perlman, apparently. He grabbed a pair of crutches before stubbornly twisting, wobbling, and hopping his way upward. There was a final, dangerous  sway even as he sat down in the chair. After a cursory bow to acknowledge thunderous applause for his unprecedented climb, he raised his hands and began milking a marvelous orchestral performance. I only had the strength to stay a few more minutes but I’d seen enough. My Superman is super in more ways than one. I’ve never felt more inspired in my entire life.

PS. It’s significant that my first performance as a soloist with a grown-up orchestra was the theme from Schindler’s List. I think I was 12 or 13 at the time, and I remember listening to Perlman over and over again as I practiced. Since then I’ve lost track of the number of times I performed that piece…with or without an orchestra. If you’re curious, you can check out this video of me and Ivan performing a contemporary version just a few months before the accident. Throughout the years I’ve always listened to recordings from my rehearsals and performances so I could compare them to, well…Perlman. Ya gotta keep learning from the best, right?

 

Salty and Sweet

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Pre-concert Posing..;)

I can’t settle for sadness – even when I cross a less-than-ideal finish line (in my case seizure med improvement). Settling for sadness just isn’t the solution. But a positive outlook doesn’t make moving forward a great experience 24/7. I caught my breath when this picture popped up on my Facebook “memories” feed a couple of weeks ago. It was the last time I soloed with an orchestra. For those of you who aren’t into the whole classical music thing, soloing opportunities are very rare. Young musicians typically have to compete for an opportunity, and the winning pieces are complex (they’re created to showcase the both the performer’s artistry as well as their technique).

The concert above took place only a couple of weeks before I graduated. I was 22, had the best boyfriend ever, was still completely in love with violin in spite of my health science major, and would get engaged only a month later (okay, so I didn’t know that part yet!). Another chance to solo with an orchestra was the icing on a perfect graduation cake. (My piece was Lalo’s Symphonie Espagnole if anyone’s wondering). While I forgot to ask Mom or Dad to record the performance, a friend must have snapped this pre-concert picture and posted it afterward. Hence why it popped up as a memory on my feed.

That beautiful memory of a beautiful afternoon actually hurt me. The photo hurt because it reminded me of a particular type of life experience that is gone for good. In the last 18-ish months, my main focus has been discovering the “new me” and what exciting things this new me is capable of. The journey has turned out to be a dichotomy so far. I’ll never leave the accident behind, so  it’s an integral part of the new me. But the accident also gave me most of the blessings I have now, so it’s fostered my new good side, weirdly enough. That picture is the old me, on the other hand. The old me is still part of who I am. I used to think it would be better to try forgetting the old me as I transitioned to the new me. It’s definitely easier to forget than to keep cycling through emotions as old memories pop up. But I was wrong. God gave me an exciting, messy, beautiful, first 23 years on earth. They’re worth hurting for sometimes, and definitely worth remembering all the time. I downloaded that picture. It’s staying on my iPhone for good.

The Deal with Dad

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He hasn’t changed much!

It’s time for the last (but not least) post in my “Family Tribute” series. In the vein of its being almost Mother’s Day, feel free to review Mom’s tribute too!

My dad is an exceptional manager.  December 2016 may well have been the ultimate challenge in his management career. Dad was the one who sprang into action and snagged those plane tickets I referenced in Mom’s post. In fact, he snagged them so quickly that he and Mom boarded the plane only a couple of hours after the initial phone call. Riverside found Dad by Ivan’s side as they untangled a baffling web of doctors and lawyers. Dad’s tenure in resort management followed by 20 years of pastoral experience (think TONS of hospital visitations!), provided the ideal skill set for organizing such a logistical nightmare.  Speaking of pastoral duties, that’s the other December puzzle Dad had to solve. Even if you’re not a regular church-goer, it’s easy to guess that Christmas is the year’s focal point for every church. There are extra children’s programs. There are extra community outreaches. There’ s the traditional Christmas Eve service. On top of all this, our church offers an early Christmas Morning service (although not all churches do that). My Dad only began caring for Hillside (his and now our church) in Summer 2016, so December 2016 was his first chance to tackle their particular Christmas agenda. And suddenly we needed him 24/7 in Riverside, about 400 miles south of where all the Hillside action was happening. Not ideal.

Since I was unconscious for a while and then woke up with the mental capacity of a toddler, I didn’t analyze how he managed so much multitasking. I know now that he was with us almost all the time at the hospital (so NOT in San Jose), and that he stuck with Ivan through thick and thin when it came to legal and medical affairs. Apparently there were some flights and drives to San Jose so Hillside remained functional, but I don’t really remember times when he was gone. I do remember a lot of phone calls. Most of those probably involved leading Hillside in absentia. While it’s only natural that both those parties regretted an untimely separation during the busiest time of the year, the amount of love and encouragement Dad received to place family above all else – that kind of church support seems almost supernatural.

(Here’s where I offer a GIANT shout out to the incredible Hillside congregation. In case you’re wondering, none of them had ever met me at the time of the accident.)

Unfortunately, a church can be without its pastor for only so long. Dad transitioned back to San Jose while I was still in the rehab hospital, but stayed connected with all my “firsts” through FaceTime, phone calls, and WhatsApp.  He made as many personal visits to Riverside as possible. FYI, it’s no small feat to leave a congregation mid-week PLUS prepare a sermon on the go. Poor Dad also lived by himself for five months. Pardon my repetition, but I have no idea how any husband and wife could be apart for so long under that level of stress. Like Mom, he never complained. (Side note – he did develop an uncanny emotional connection with their black cat during that time. We received several cat + Dad selfies that he should be VERY thankful we deleted). Moving on from the bizarre cat relationship though, Dad’s devotion to caring for us meant one final flight to Riverside in May. He flew down specifically to drive our moving truck to San Jose. I cannot begin to imagine how stressful – and stuffy – driving an old truck up the State of California at the beginning of a hot summer must have been. I felt bad enough that Ivan dealt with all my TBI problems alone for 7 hours, but at least we had fun music and reliable air conditioning.

Our transition to San Jose returned Dad’s physical presence to both his ministry at Hillside and his relationship with us. From hanging pictures in our new apartment, to taking me on Friday coffee dates, to making it to every ER trip (as well as my Stanford and Redwood City hospital stays), Dad makes all the difference. I can guess that his undivided attention makes all the difference for our Hillside family, too. From me, Ivan, Mom, and Hillside – any deal with Dad is the best deal ever!

 

 

A Brand New Doc – But All Those Meds!

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Dinner is served…

It’s time for another seizure update! My current epileptologist is retiring in May, and we connected with my new doctor this past Monday. I had met her before in late November (the whole Redwood City team works closely together), so Ivan and I didn’t think the transition would be too awkward. Instead, we were excited for an extra in-person appointment since those always make communication more direct and accurate. Monday seemed like the perfect opportunity to share our current and long-term goals – and to keep raising my medication until those goals became reality. In case you’re wondering, my short term goals were 1) to not get triggered in the daytime if I’m wearing my protective sunglasses (yes, that still happens sometimes) and 2) to be able to go out after dark (currently I can’t do that at all). The long term goal was ZERO seizures per week (and hopefully no more sunglasses). I did pray about the appointment, but I wasn’t too worried since my goals seemed like no-brainers.

The great news is that my new doctor is delighted with all my progress since January. Going from twenty seizures a week to one or two seizures a week IS pretty impressive, after all (shout out first to God and then to my old doctor!). She thinks my current medications are the right ones for my type of epilepsy. That’s also a praise, since switching medications is really difficult for both my brain and the rest of my body. What Ivan and I did NOT expect to learn is that I’ve already maxed out the healthy dosage levels for all my medications. Basically, we need to settle for one to two seizures a week for the long haul. There’s no arguing with dead brain cells or a specialized type of epilepsy, but settling for anything less than ideal is the opposite of how I’m wired.

Don’t settle. That’s been my working motto since middle school at least – although I was a bit older when I finally put words to it. Rewinding back to way WAY before the accident, “Don’t Settle” propelled me to New York when I was accepted to study violin at one of the top music schools in the United States. Only three years earlier, a notable pre-college violin teacher told me my technique was so poor she didn’t know if I had any talent. Thankfully I didn’t settle for that.

After a couple of years I chose to move back to California for personal and religious reasons…and “Don’t Settle” moved back with me, too. I’m bad at both science and math but I wanted a stable job after I graduated college. The job aspiration led to my major in healthcare administration – a degree which falls under the “Health Science” umbrella. Somehow I survived biology, physics, and statistics before graduating. I also added biostatistics to that list once I started grad school. (I got A’s in everything except physics.)

My point in sharing these experiences is not to showcase how awesome I am; as a flawed human being, I am anything but awesome in a lot of areas. Instead, I’m sharing a few highs to illustrate God’s intricate handiwork in designing my life. God used all those “Don’t Settle” moments as bootcamp for the biggest battle yet: the accident. I didn’t want to settle either for life in a wheelchair or life walking poorly, so I developed an OCD physical therapy regime (think multiple hours a day 7 days a week), as soon as I got home from the hospital. A crippled left hand didn’t sound worth settling for, either. I never regained sensation (dead brain cells don’t come back to life!), but committed hand practice at home made it so functional that I sometimes forget I can’t feel it.

Naturally, I assumed “Don’t Settle” would fix my seizure problem, too. It had worked for everything else. Hearing that we’d reached the end of medication options caught me so off guard I had no idea what to do. Wallowing in disappointment felt well-earned that Monday night and some of Tuesday – until God reminded me not to settle. I might have to settle for ongoing brain issues but I did NOT have to settle for ongoing attitude issues. The first step in not settling was giving thanks. First of all, I needed to tell God, my family  (and finally you all), the great parts about Monday.  It was a blessing my new doctor was so excited about the progress I’ve made since January. Happy doctors are always a good sign! One to two seizures a week is certainly not the end of the world…it leaves plenty of time to enjoy fun things. Not being able to go out at night is a bummer, but at least it’s Daylight Savings Time right now. I’ve already experimented with safe daytime outings, and there are plenty more we can add to my growing list!

God’s spent a lot of time teaching me not to settle in music, school, and recovery. I guess it’s time to ask for His strength to not settle with a negative attitude, either. He knows best!

PS Super thanks if you made it to the end of this long post! 🙂

¡495 Pages in Spanish!

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Long-term memory for the win!

 

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

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

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

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

Now, to work on those speaking skills…

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

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

To Mom, With Love

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I’m not the only one she mothers!

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

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

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

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

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

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

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