20 June 2016

Broadway and Brain Tumors: Why Meeting a Celebrity Meant So Much to Me

As you know, on May 28, the anniversary of the day my life fell apart, I decided to replace the sad with happy memories and took my family to New York to see She Loves Me on Broadway. (It was fabulous, guys! If you have a chance, you totally need to go see it!! And you should take me, because I absolutely want to see it again. And again.)**

After the show, I had my first ever shaking-with-giddy-excitement-over-meeting-a-celebrity, total fangirl moment. Because (eep!!) I got to meet Zachary Levi! (And yes, he's as genuine and nice in person as you'd expect.)
I was shaking so hard while waiting for the actors to come out after the show that my children were openly mocking me. (They weren't the only people laughing at me. Really, I caught smiles on the faces of all the total strangers around us as they watched this grown woman literally bouncing with excitement. I'm sure many of them went home and told their friends about the nutty woman with an insane celebrity crush.) And in my defense, a large part of the shaking was due to the fact that I forgot to take my brain tumor medicine (the one that controls my intense muscle spasms), so my brain was sending all kinds of wonky signals, and my excitement translated into spastic shaking. But I can't blame it all on my brain tumor. I haven't been this excited in a LONG time, guys!

It was a perfect day - or as close to perfect as I could imagine - and the absolute best way to celebrate the end of a REALLY hard year
I got to see one of my favorite musicals,
featuring one of my favorite actors,

surrounded by my favorite people in the world! 
Me with my family (and Jessica), meeting Zachary Levi! (The lady in the sunglasses up in the corner was totally giggling at my spastic fangirling the whole time! - Luckily, I think she was more amused than annoyed.)
 And we even went out after the show to get some vanilla ice cream as a treat. (If you don't know why that's significant, you really need to listen to the soundtrack! You can buy it on Amazon and iTunes!)

I came home from New York two weeks ago with a smile on my face that I'd thought I would never find again. For the first time in a year, I finally allowed myself to hope for good things. For the first time in a year, I felt like myself again. And I couldn't wait to tell everyone I knew all about it!!

But when the teasing over my "celebrity crush" started, I realized that without a LOT of backstory, I really couldn't explain why meeting this particular actor was so significant to me. (Yes, it will be long and rambly. So I'm highlighting the main points in a larger font for those who want to skim through.)

So why was meeting Zachary Levi so important to me? No, it's not because I think he's attractive.*
 *Of course I think Zachary Levi is attractive. 100% of the people who didn't already know who the actor was thought that this picture (the one my husband, Phil, drew to commemorate our trip to see She Loves Me) was a portrait of a younger Phil, instead of a picture of Zachary Levi. Ummm... yeah. I think the actor is attractive, guys. But that's not the point.
I know I promised pictures and a recap of the trip a long time ago, but I felt like I really needed to tell the whole story ... and it's taken me weeks to get up the courage to share details I haven't even admitted yet to my own family. I tried to write a totally superficial Yay-I-Met-a-Celebrity blog post, but without the story behind my excitement, it just felt wrong. Not just because all of the constant teasing about my "crush" has gotten a little tiring (seriously, guys, the reason my husband isn't "threatened" by my obvious excitement at meeting the actor is because he knows the story - he knows my excitement isn't about a "crush"). But beyond the desire to explain myself, I had to share because recently I have seen good friends being attacked for sharing opinions without first demonstrating their "right" to speak on those issues. I've seen friends being mocked for enjoying things simply because they don't look like the "type" of person who would like those particular things. I've talked to friends who are afraid to speak up about matters both important and trivial because of how someone somewhere might respond.

And I think it's important for us to realize that we don't always understand what's going on in someone else's head.

That thing you think is silly or unimportant? It might just be the most important thing in the world to someone else. And that person who "has no right" to talk about the issue you're so passionate about? They might understand more than you think.

So get comfortable, guys. I'm going to explain why meeting Zachary Levi meant so much to me. And why I'll be forever grateful to this actor who probably has already forgotten me.

You already know about my brain tumor, right? 
Because that's kind of important to this story. And I won't go into it here, because I shared the whole saga a few years ago on this blog. If you want to read all about it, here are the links: 1 / 2 / 3 / 4 / 5 / 6  (Go ahead. I'll wait.) Okay, are you all caught up? Good. (For those of you who didn't want to read the whole six-part story, I'll sum up: I have a brain tumor. It's "as benign as a brain tumor can be," but the fact that it's in my brain stem causes a lot of problems for me, as the signals from my brain get all jumbled up on the way to make the rest of my body function. And since my brain surgery in 2006, where they were able to remove 60%, but not all of the tumor, the remaining tumor doesn't show up in MRI scans. Sometimes it's severely frustrating to try to get new doctors to take an invisible tumor seriously, but I've been blessed with some phenomenal doctors along the way. And I'm surviving each new challenge as it comes.)

What I didn't tell you (what I didn't tell ANYONE) was that, although our move to Albuquerque was a huge blessing, in a way, because it put me in the right place to meet the doctor who knew how to treat the most debilitating of my brain tumor symptoms, the climate in New Mexico was pretty toxic for me. The combination of high altitude and dry air made it nearly impossible to breathe. (A lot of people with asthma move to dryer climates to make breathing easier. Not me. My airways close when there isn't enough humidity. Just one of the many reasons my family jokes that I'm built backward.)

And several of my other random brain tumor symptoms were getting worse. The new medication my NM doctor prescribed helped to control the intense muscle spasms, so as long as I didn't miss a dose, I didn't have to worry about the constant pain. But the dizzy spells and blackouts, the blurred vision, the nausea, the moments of panic when all of a sudden nothing around me looked even vaguely familiar, ... all of those symptoms were coming more frequently.

I spent an entire day in the emergency room, hooked up to monitors while the nurses and doctors puzzled about why my oxygen levels kept dropping so dangerously low. They ran test after test and couldn't find anything wrong. No obstructions, no inflammations, nothing that should be interfering with my oxygen absorption levels. But I noticed the pattern the ER staff were missing. Because I'd experienced it before. The scariest of all my brain tumor symptoms: I literally forgot to breathe. Every time I started to relax, every time I began to drift off to sleep and stopped consciously thinking about my breathing, I just stopped. This wasn't a struggling-to-get-air-into-my-lungs kind of thing. Sometimes, my brain just doesn't send the right signal, and breathing isn't always the autonomic response for me that it is for most people. I literally forgot to breathe until the monitors started beeping to warn me of the dangerously-low oxygen levels. This hadn't happened for a long time, but now I couldn't get my brain to reset back to the default breathing settings, and I felt like I was in that old joke, where the dumb blonde had to have a post-it note to remind her to breathe.

I had increasingly-frequent occurrences where the words and thoughts in my brain became a jumbled mess when I tried to hold a normal conversation. And some of the stranger moments do kind of make me giggle. Like when I tried to tell my husband "I love you," and instead muttered "I'm craving tater tots." (I didn't actually want tater tots at the moment.) Or when the words "peanut butter" suddenly had the power to reduce me to a sobbing mess. (This one still happens frequently and with no warning, though we've discovered that with the right inflection, "peanut butter" isn't always a devastatingly-sad phrase. But if you offer me a peanut butter cookie and I collapse into a puddle of tears on the floor, please don't take it personally!) ... As funny as these things are, it's also freaking scary to have so little control over your own mind.

By the time TWELVE STEPS was published in March of 2014, I was having more bad days than good. And the last time I'd experienced this intensity of symptoms was in 2005, when my tumor had started rapidly growing again (leading to my brain surgery in early 2006). But now, because the remaining tumor was invisible to scans, I had no way of knowing if the increased symptoms meant my tumor was growing again or just a result of stress or because I was living in a not-good-for-me climate. 

I knew that worrying about it wouldn't help anything. And with the publication of my book, I suddenly had the added pressure of being a semi-public figure, so complaining was out of the question. As an author, it was my job to smile and be happy. And as a mother, it was my job to protect my children from the scary parts of life. So I pushed through with a smile on my face, carefully hiding the fact that I was beyond terrified.

I was afraid to even write about my fears in my journal, because what if my husband, or one of my kids read it? Since there wasn't anything we could do to make things better, worrying them with "what if Mom dies?" didn't seem like the best course. So I created an anonymous profile online, totally unconnected to my real online profiles, that I could use to interact with other brain tumor survivors on a message board for the American Brain Tumor Association. And when it was too hard to keep silent, but totally impossible to even think about placing this burden on the shoulders of those who loved me ... I would go online and post an anonymous "diary entry" to confess that I worried about these things.

And then, just in case, I started quietly preparing for the scariest "what if" scenarios. On my good days, I spent hours in the kitchen, creating custom recipes for friends and family (because who hasn't been comforted, when they miss someone they love, with a bite of Grandma's famous pound cake?) ... I started playing matchmaker for my friends, so they'd have each other to hang out with if I suddenly wasn't there to go to lunch with ... I stepped up my efforts in teaching my kids ALL the life skills, so they wouldn't have to subsist on boxed mac-n-cheese if I suddenly wasn't around to make dinner, or wonder how to remove ketchup stains from their favorite sweaters if I wasn't there to help with the laundry ... And I looked for every opportunity to let my friends and family know that I truly believe this life isn't the end. Even if I'm not here tomorrow, I'll never be truly gone. 

But I was afraid to sleep at night because what if I forgot to breathe while sleeping? I might close my eyes and never open them again. Honestly, I wasn't afraid of death ... But what if my family wasn't as prepared for it as I hoped they would be?   

So for months, in the quiet, middle-of-the-night hours when everyone else was sleeping and the "What If?" monster had me worrying that sleep might be deadly, I would sit at my computer and write ... or catch up on emails ... or read through the reviews for TWELVE STEPS. (Side note: NEVER read the reviews of your own books! Even though most of them were positive, and it meant so much to hear how my words had touched someone else, those way-too-tired middle-of-the-night hours drew my focus to the handful of negative responses that told me I wasn't good enough.) ... So when trying to be productive didn't work, and I was still afraid to sleep, I kept myself awake by scrolling through random YouTube videos.

I discovered this video of Zachary Levi (and Sara Chase) singing "Things I Never Said" from his first Broadway musical: First Date. Which led to all kinds of research about First Date, because I simply had to know where this song fit into the story. (If my internet sources are correct, this is a letter that his character carries with him - written by his deceased mother. Which, for obvious reasons, hit me quite hard.)

And because I think Zachary Levi has one of the best voices ever (seriously, can we start a petition to have him release an album or twelve?), and because this song had suddenly become a bit of a theme song for me, the next obvious step was to Google "Zachary Levi singing." Which led me to this video of his NerdHQ appearance in June 2014. (He sings a tiny bit of "I have a dream" from Tangled when an elementary school teacher requests a song for her students from Flynn Rider, which is why this video came up when I googled "Zachary Levi singing," but if that was the only bit of the video I'd seen, I wouldn't be telling you this story right now.)

Of course I watched the whole video. What else was I going to do in the middle of the night, when I literally couldn't sleep, even though I was beyond exhausted?

About 45 minutes in, Zac said, "I feel a little bit of a pressure sometimes to always be happy. And I'm not. ... I'm not always happy. ... Life is hard. And it doesn't matter who you are. It doesn't matter what level of success you've risen to or fallen from or whatever. It's hard. And I do feel like God has created me to bring happiness, so when I feel like when I'm not doing that, I feel like I'm failing. And that's hard."

 Yes! I'm a natural optimist. I like to look for the rainbows and silver linings in every dark cloud. I appreciate the dark clouds for the soft way they filter the light. And overall, I'm a pretty happy person. Except when I'm not. But my job is to lift and support others, to help them find the happy moments in all of life's little (and big) trials. And if I can't do that ... what am I here for?

The words he spoke were obviously things I needed to hear, but I've heard the words before. I've voiced these thoughts myself countless times. It wasn't anything new. But when he started to tear up a bit, and then felt the need to poke fun at himself for showing that emotion, something clicked. This was a truly genuine moment. He wasn't just playing a part. He understood that need to always be the happy one. 
Suddenly, I didn't feel quite so alone.

I can't even count the number of times I've re-watched this video in the past two years. Over and over and over again, I've used it to remind myself that I'm not alone. That I can keep going, even when things are so hard that I'm afraid I might break. That I don't actually have to carry the whole burden myself, and I'll still be worthy of love if I'm not strong enough to always be the strong one.

So when the opportunity presented itself to see She Loves Me, and when everything fell into place to give me the perfect, happy, worry-free day I needed after such a difficult year, it felt like the Lord was giving me a sign ... telling me that it's okay to let go a little bit ... that I don't always have to be the one to carry the full burden. 

 But here's the thing, guys. My day wasn't perfect because I met Zachary Levi. (sorry Zac!) He just happened to be a part of my perfect day. 
The day was perfect because, for the first time in a year, I dared to hope for positive things, and happy things happened. The world didn't come crashing down around me. For a year, every time I've posted an update recounting the blessings I've seen in the challenges we've faced since our house was destroyed, I've received bad news (another delay ... a failed inspection ... a persistent illness that knocks me out when I don't have time to rest...) I was afraid to hope for good things, and it was slowly killing this girl, who thrives in a "rainbows and bubbles world. But for one day, everything went exactly according to plan. We woke up on time and got on the road precisely when I had planned. We didn't hit traffic on our way up to New York. We had time to get lunch at the gourmet grilled cheese shop I'd been looking forward to trying, and to walk in Central Park before the show. The musical was everything I hoped it would be - the roles perfectly cast and every song performed even better than the soundtrack (from a previous revival) I had grown to love. (There's always a fear that the New Version won't measure up to the familiar one ... But I discovered that I loved this revival even more than the one I already loved!!) ... Then, I got to meet Zachary Levi, and he was genuinely kind - taking time to answer my daughter's questions about performing on Broadway (her dream), chatting with everyone in the crowd, and posing for lots of pictures with everyone. ... For an entire day, I could smile and laugh and giggle with some of my favorite people in the world, and even though I forgot to take my brain tumor meds, my body didn't shut down on me. 

It was perfect because, like that YouTube video that gave me hope when I struggled to find it two years ago, She Loves Me is full of messages of hope and love and trusting in things to work out the way they're supposed to, even when you're faced with a challenge that, at first, appears to be the worst thing that could possibly happen. 

It was perfect because for a full year, every time I dared to dream, life would throw me a curve ball, and I was literally breaking under the weight of all my crushed hopes ... but then I got to spend a whole day laughing with my family and one of my best friends. And for one day, it didn't matter that we had yet another delay on our house construction ... or that my health is still on the shaky side ... or that I continue to face dark paths with scary challenges and no sure guarantees.
My only regret is that, in my fangirl-flailing over meeting Zachary Levi, I got all tongue-tied and didn't say the things I wanted to say. I wanted to tell him thank you. To let him know that his words had helped me through a very difficult time. I wanted to let him know that he made a difference. Because, as an author, it always means so much to me when I get that kind of feedback from my readers. But I couldn't figure out how to express it without going through the whole story. So I didn't. ... And I know it's unlikely that he will ever stumble across this blog, but Zac, if you read this: Thank you!
A perfect day = Smiling and laughing with my favorite people in the world!

Of course, life can't always be perfect. And the past few days and weeks have been hard. As days and weeks are bound to be. And even though I know it's nearly impossible to recreate a "perfect" moment, I've been wishing that I could afford a trip to New York to see the show one more time. To lock the scenes into my memory for days when I need to access those perfect moments again. But a trip like that is expensive. And with every penny going toward rebuilding my house, I really can't justify the cost.

** This morning, I finally admitted to myself that it's not going to happen, no matter how much I wish it ... But as I was writing this blog post, a notification popped up in my Facebook feed: She Loves Me will be showing in a live-stream broadcast from BroadwayHD on June 30th!!

It's just a little, totally "unimportant" thing in the grand scheme of life, but this news fills my heart with happiness. I'll get to relive those memories without breaking my budget. 
A perfect reminder that the Lord is on my side. And He loves me.