Ivan is a ninja. He enters and exits my parents’ condo undetected. Mom once checked out behind him at Costco without spotting him. He’s pushed, pulled, lifted, dragged, and (insert any other word for “toted”) me in and out of various locations without attracting so much as a startled glance.

Ivan revealed his ninja nature quite some time ago – Thanksgiving 2017, in fact. Some of you would remember the initial seizure saga reached a crisis around that time. None of you would remember that Ivan picked up an apple pie and brought it (and me) to my parents’ house for dinner that Thanksgiving. Apparently dinner went well, but our five minute drive back from my parents’ condo to our apartment complex did not. Most of that night is fuzzy (I was fading in and out of awareness between seizures), but I have one very high-definition snapshot of Ivan pinning me to a concrete wall with his left hand to keep me from falling. He was holding that pie high above his head with his right. Somehow (I have no idea how) he got me down a flight of stairs, across the complex driveway, through a hallway, and into our apartment…in between my full-body seizures. He never dropped the pie.

It’s January 2019, and Ivan is still a ninja. When asked if he wanted me to include his feats of stealth in my last post, he opted for silence. “Maybe later…” he conceded.

Well, it’s later.

If y’all remember, we hit the road to Itzhak Perlman after I’d had five seizures and taken a rescue drug. “Hitting the road” entailed Ivan wrangling me, my wheelchair, our sandwich-bag supper, a latte, and a Frappuccino into our tiny blue Yaris. Nothing was spilled, nothing (including me) was dropped, and no cars were harmed in the making of that production. Once installed, I sat for most of the drive with my eyes closed to avoid more light triggers. This required some expert driving on Ivan’s part so I wouldn’t get motion sick from the starts, stops, and bumps that come with a Bay Area rush hour. Upon arriving in downtown San Francisco, Ivan prowled for the unicorn parking spot that was wheelchair friendly, near the concert hall, and unlikely to attract unsavory attention – a tall order given SF’s parking reputation. Somehow he snagged a handicap spot that was curbside to the front doors at Davies’ Symphony Hall.

But this ninja’s mission was far from over. Ivan stood next to my wheelchair for almost two hours just waiting for the doors to open. He haggled with ushers to prove that we had indeed purchased ADA seats, that no I couldn’t abandon the wheelchair and navigate a staircase in the dark, and that  yes I would most likely need direct access to leave the hall during the performance (my brain is still easily overstimulated by noise). Ivan is possibly the most non-confrontational person I have ever met, but somehow he got exactly what he wanted from a potpourri of ushers in a potpourri of moods. He even talked one into clearing out a ladies’ room since I was too unsteady to go wandering through a crowded, tile-floored bathroom on my own.

The ultimate ninja test was yet to come, however. As the usher deposited us near Mr. Perlman’s green room, both Ivan and I spotted a giant problem. Stairs. The green room was up a flight of stairs. Unfortunately this particular usher felt his civic duty was complete, and so he retreated back from whence he came…without any parting words of staircase wisdom. Silently, Ivan leaned me up against a wall with his left hand, raised my wheel chair high above his head with his right, vanished, and was back again before I had time to process. I couldn’t place its source at that time, but I suddenly had a strong sense of deja vu. Where has he done this before??  It was the pie. Ivan did it during the pie incident. Unfortunately for Ivan’s sweet tooth, this time involved a wheelchair instead of baked goods. Mr. Perlman must’ve been a decent recompense for the absence of pie, however, since Ivan whisked me up the offending staircase and into my wheelchair in record time. It has since occurred to me that whisking someone who wobbles is scientifically impossible. Nevertheless, Ivan whisked.

Ivan, Mom, Dad, Anna – all four work overtime to keep me up and running every week. All four say they rely on the grace of God. All four are also fastidiously low-profile, and none better than the resident ninja. But sometimes, ladies and gentlemen…sometimes even ninjas get spotted. 😉

Ivan: I’ve read and watched all of Naruto.

Yes, this is Itzhak Perlman. This is also me and Ivan. This photo is less than twenty-four hours old.

This is one of the hardest posts I’ve ever written. Writing involves staring at my right hand and not at the picture above, you see.

You might remember my post last May about our pilgrimage to hear Mr. Perlman in concert – the consummation of 15 years of my trying to find a performance that was 1) in my area and 2) not too expensive. Our trip last spring verged on medically disastrous, but we did it nonetheless. Seeing him onstage was probably my finest post-accident moment.

That blog post on Itzhak Perlman found its way to…Itzhak Perlman. Hence the photo last night.

Mr. Perlman was in the Bay Area again last night for a concert experience called In the Fiddler’s House. The program celebrated music from several Jewish traditions, performed by the legend himself with a cohort of traditional instrumentalists and singers. Some email conflab with “the powers that be” established that if I could successfully attend the concert, I could also successfully meet my violin idol afterwards.

[Side note: If concert-going were still attainable – which it supposedly is not! – the program’s rich cultural offering would have tempted me to attend, even sans incentive. We embarked on a musical tour from centuries-old eastern European wedding music to more current Shabbat and/or Hasidic melodies. Apologies to all who are familiar with this music and might be laughing at my botched description! ;)]

Every journey has its beginning, so I will now rewind to yesterday morning at 10am. Ivan and I had “perfectly” engineered my activities so I wouldn’t  get triggered before we hit the road at 3:45pm. Driving on the freeway is enough of a seizure death trap as it is. Apparently Murphy’s Law did not get that memo, because one of our apartment lights flickered a bit before noon and sent me into a decently bad seizure cycle. One rescue drug later found me dozing in bed while Mom played babysitter/nurse. Those pills knock me out for at least a couple of hours, and often irritate my brain for the rest of the day. We were past the point of no return as far as Mr. Perlman was concerned, however, so Ivan still rolled me out to the car and the car still rolled out into the rain at 3:45 as planned.

Somehow we made it into San Francisco without further incident. I may or may not have been blindfolded to cut out all light triggers, but a girl’s gotta do what a girl’s gotta do. I also may or may not have consumed a cappuccino at lunch and then a latte on the road, but who’s counting espresso shots? A girl’s gotta do what a girl’s gotta do. Caffeine staves off the TBI symptoms that are inevitable after seizures and/or a rescue drug. We pulled in front of Davies Concert Hall excessively early, but we desperately needed that curbside handicap space. A girl’s gotta do…you get the picture. Ivan rolled me into the lobby and I tried to doze with my eyes covered and my noise-canceling earbuds in place until the doors opened at 7pm.

The open doors revealed a contingency we had not counted on: our ADA spots (read wheelchair space next to caregiver seat) had been double-booked. My internal moan turned into an internal smirk since…guess who got installed in a box in the orchestra section instead? Ladies and gentlemen, I’d assumed that any exclusive seating area was not in the cards for me…ever…much less a box! Not a bad trade.

Labeling last night as “concert of a lifetime” is no overstatement. At one point, some (read “mostly all”) those in the main floor seating area got swept up by a medley of traditional wedding music and started dancing in the aisles. I kept my eyes shut for most of the concert because of possible light triggers, but Ivan says that people rushed down from the upstairs seating areas to join them. Apparently it took a few non-wedding songs to convince everyone to sit back down/go back up.

My brain survived til the end of the concert only by God’s grace. I did have some seizures, but they weren’t nearly as bad as those from the morning…most likely since the rescue drug was still in my system a little bit. It didn’t hurt that the klezmer program was shorter than a traditional symphony concert, and much quieter. Add some noice-reducing earbuds, covered eyes, lobby naps and…well folks, we made it!!!

I suddenly realized I had nothing intelligent to say when I was about thirty-six inches from reaching Mr. Perlman backstage. Thankfully he’s played thousands of concerts and met who-knows-how-many admirers throughout 60 years as a concert violinist. He knows my violin professor from my late high school and early college years, which was a useful icebreaker, and I gave a brief recap of who I was and what had happened to me. Parking wheel chairs as close as possible added a dash of comic relief, then – snap! – the (no-flash) photo you see above. I’m currently counting how many different walls on which I could hang said picture.

But you know what the best part is, my blogging friends? He signed my sheet music for the violin solo from Schindler’s List. The same sheet music Mom bought me when I was 12 years old. The same sheet music I practiced for my very first solo with a grownup orchestra. Now that‘s a keeper for a lifetime.

Ivan: Happy new year everyone! I’d like to give an update on how Grace and I are doing not only medically but also with life in general. We have some exciting career and education updates to share! That being said, I’ll start with the medical side and approach it somewhat systematically, so—please bear with me. 🙂 Physiologically, Grace still faces two main challenges: seizures, and the effects of her traumatic brain injury (TBI). Her seizures are triggered by light, or more specifically, sudden changes in bright light. This encompasses everything from sunlight glinting off of cars, LED headlights and taillights, exposure to LED lights in general, fluorescent lightbulbs around our apartment (which occasionally flicker), as well as unexpected videos or ads on TV, computer, and phone screens. These seizures drain Grace’s energy, and often a bad string of seizures takes days to recover from.

Because of her TBI, Grace needs a lot of structure in her daily routine. It is hard for her to face open-ended situations (like life), and unexpected changes to her schedule are hard to process. TBI also limits her energy so that she is only able to work on activities for around 20 minutes at a time before needing to rest. When Grace is particularly fatigued, she may even experience TBI episodes in which, for usually around 10 minutes or so, she regresses to behaving like a five-year-old child having a tantrum. She becomes upset and unable to process what I say until the episode passes, and she returns to her normal self.

Needless to say, Grace’s daily life is extremely limited. I feel so sorry for her—at times the imagery of a caged bird comes to mind. I remember how gifted, energetic, active, talented, and vivacious she used to be, and she still possesses all of those characteristics now, but is unable to fully express herself due to her physical limitations. It’s hard to see my 25-year-old wife stuck at home because even walking from our apartment to our car in the parking garage poses a serious seizure threat.

Yet her attitude continues to amaze me daily. She knows who she is—a beloved child of God—and she knows where her eternal future lies. She is a fighter who pushes herself beyond what anyone else (including doctors, at times) might recommend, and I believe God has blessed her tremendous efforts so that, despite her limitations, she has been able to accomplish more than many would have predicted.

For a number of months now, Grace has been enrolled in an accelerated online B.A. in English degree at Cal Baptist. In the face of huge obstacles, I have seen her persist time and time again, giving her absolute best even when it hurts. God has blessed her efforts to the extent that her professors, who were initially unaware of Grace’s accident and limitations, have highly acclaimed her work. Way to go Grace! Keep giving your best to God and He will take care of the rest.

On my part, I have been blessed to continue my own studies as well. I’m currently enrolled in an online EdD in Organizational Leadership at Grand Canyon University. God has been helping both Grace and I manage our responsibilities as best as we can so far, and we will continue to rely on His grace throughout this year and beyond, every step of the way.

No one knows what a year may hold, except for the One who knows all things—including human hearts. May we dedicate our lives to pursuing the One who pursued us first, giving Him all the glory and praise because He deserves it all and so much more. Thank you all for continuing to lift us up in prayer. Your love means the world to us, and we are humbled to continue to share our journey with you all! May God bless us and make us a blessing.