David and Goliath

In chapter five of his book entitled David and Goliath: Underdogs, Misfits, and the Art of Battling Giants, Malcolm Gladwell discusses courage. He says “Courage is not something you already have that makes you brave when the tough times start. Courage is what you earn when you’ve been through the tough times and you discover they aren’t so tough after all.”

When he says this, he is talking about how the Germans miscalculated the psychological effects of bombing London in early 1940. They were expecting the bombs to cause Londoners to fall into mass hysteria. Although they were fatal to many people, those that were ‘missed’ felt as though they were invincible. They had literally dodged a bullet, and now there was nothing that was out of reach for them. Their chances of survival were overwhelmingly slim, but when the smoke cleared, they were alive.

When I read that quote, I got the chills. It spoke to me so strongly. Not that my ‘tough times’ were found to be not ‘so tough after all’, but the point of the quote resonates with me. My chances of surviving and thriving were abysmal. But here I am. The tough times I have experienced were and probably (hopefully) always will be the toughest in my life. I can take on any challenge that I may encounter with this in mind, and suddenly it doesn’t seem so hard. I continue to have a nightmare (flashback) about my time in the hospital every once in a while, and it makes me shudder to think about the fact that any of that actually happened to me.

My accident revealed my initial courage, but my life after has tested it every single day since. Every day, I think I have earned some courage because every day feels impossible, but then I do it. Sometimes it’s easier than others, but I make it through every single one. Every day, I stare my Goliath in the face and every day, I fling a rock at his forehead.

I defeated my Goliath when I graduated college and walked across the stage with grace and dignity, none of which I had just two years prior.

I defeat my Goliath when I put on some bright lipstick, something I usually avoid because it draws attention to my crooked mouth.

I will continue to defeat my Goliath every day, with every success I achieve. With every breath I take on my own, with every step I take on two working legs, I win.

Everyone has a different Goliath. I know that mine is pretty unique and not exactly relatable, but my struggles are the same. I, too, have days where things are hard and terrible and I just want to quit, but then there are the days that feel like the gods are smiling down on me. I am determined to have a great fucking life despite what’s been thrown at me. So bring it on, universe.

I hope that my determination can be an example to anyone who is grappling with any Goliath. Every day, every fight, is worth it.

 

Thanks for playing

This week, I met with an eye surgeon up at Hopkins in Baltimore. For their sake, I will leave out their name, because it was nothing short of a nightmare. I had talked with my eye surgeon at UCLA last week about some pretty cutting-edge procedures to accomplish my goals, and wanted to see if there were any bases I had not covered. I explained this to the Hopkins doctor, and they, without actually physically examining me, proceeded to tell me that I should just keep my eye closed and safe.

Safe for what? I asked. If nobody had any intentions of opening it ever again, why the fuck should I worry about keeping it safe? It was at this point that they referred to my right (closed) eye as a good ‘spare tire’ in case anything ever happened to my left eye. What the fuck? A spare tire? Most people get two premium, top-of-the-line, formula-1 tires, and I get one and a semi-functional spare? Are you kidding me?

So, in response to them and basically any other negative person that I encounter throughout my life, I say fuck off. Thanks for playing. Bye. No, I’m not bucking medical advice- I had already been told that there is, indeed, hope for my future as a four-eyes. And I intend to wear the shit out of whatever ugly-ass glasses I have to wear when I’m old.

The past couple of weeks, I haven’t been feeling all that great about my face as it currently is. There was a professional photographer taking photos at my graduation, and when I saw them online, I hated them. I couldn’t put my finger on why, so then I started to feel guilty. I had just had this big, fancy surgery at the big, fancy hospital to resolve this. Why was I feeling like this?

Regardless of the reason behind me hating those photos, the fact that I cannot tolerate a single photo of my COLLEGE GRADUATION is heartbreaking. That day meant so much to me, and I deserve the right to love the photos and how I looked in them. Don’t I?

I also was able to follow up with my face surgeon this week. Before the appointment, the gravity of my aforementioned realization hit me. No, it’s not a self-esteem issue. No, it’s not a societal issue. All I want is to feel proud of who I am and the way I look, even on a day that has nothing to do with what’s on the outside. And I wasn’t able to do that because I can now confidently say that the surgery failed. It was never going to get the old me back, but it didn’t even come close to where it should have.

When I met with my surgeon, he willingly admitted this. He said that I fell into the 5% (lucky me) that have a lack of lift like mine. He was just as disappointed as I was, but only for a moment. Then it was time to fix it. He was equally as outraged at my experience with the eye doctor as I was, and made sure that I was aware of my options for my eye as best as he could (not really his territory). There’s a nerve-transfer-and-muscle-connection surgery they can do for my eye to help it blink just like they can do to my mouth to help it smile.

So what we are going to do is transfer two nerves; one for my eye muscle, and one for my mouth muscle. While they are in there, they will also tighten the muscle transfer I already had to get immediate results that can tide me over until the new nerves are ready to receive their muscles, about a year. Maybe this won’t happen right now, but maybe it will. It shouldn’t matter to you, dear reader, because it is my fucking face.

I really and truly appreciate the love and support of my friends and family throughout this process, and I apologize that I have born this burden in silence.

Moving On.

At the beginning of the semester, I was determined to do better in organic chemistry this time around. I went in and expressed my concerns with my professor the first week of classes; my abysmal grade in the first semester, and my withdrawal from the second semester. He told me that it would be a fight; maybe 2% of students that struggled like I did first semester pass the second semester at all. That was a scary statistic, but I had already decided this semester would go better.

Fast forward to the end of this semester. Not only did I pass, but I will receive a grade that is two full letter grades better than my first semester organic grade. I had set a goal for myself, and I blew it out of the water. This shouldn’t still be so surprising to me…I was walking like normal two months after having a paralyzing stroke. I was back in school full-time five months after sustaining a severe traumatic brain injury. I decided that I wanted to be home for mother’s day, two months after my accident, and I was. No, this is not me tooting my own horn, this is actual shit I have done and nobody will be able to take that away from me.

Clearly, there’s a trend here. When I decide I want to do something, I make it happen. Unfortunately, sheer willpower does not seem to apply to nerve regeneration. Yes, we’re back on this again but it’s a constant struggle of mine. I can pull off that hail-mary A on an organic chem final, or re-learn how to walk in a few months, but why can’t that apply to my nerves? It is so gratifying to be able to do this- to be able to accomplish just about anything I set my mind to. I am limitless, but not completely. It’s hard to understand and let go of the fact that there are some aspects of my recovery that are outside of my control, but I suppose I don’t have much of a choice.

I think this lack of control is what really lies at the root of my frustration. Clearly, I am the master of my own destiny most of the time, but there are some things that just cannot be controlled. This is where I tend to spiral into a self-pity vortex. My nerve wasn’t severed, and they were able to decompress it. There’s no reason for it NOT to come back, but I’m in that lucky very small category where it doesn’t matter that I have done everything right, or that I really wish it would come back. It’s not coming back. My mom used to tell me ‘let go or be dragged’. I can count the things I hate about my face and its paralysis, or I can move on. I’m moving on.

I conquered organic chemistry round 2. I presented my research at a national neuroscience conference. I had two surgeries within the same month and was back in school a week later. I am graduating college feeling more triumphant than I could have imagined, my face is healing well, and I’m about to begin working for a company and cause that I truly believe in. Wherever it can, things are coming together, and I will keep moving forward.

Do chocolate bunnies come in liquid form?

I had this super positive post written up about how I had the surgery done at Hopkins on Tuesday the 20th and it was incredibly painful and the swelling was awful, but that it was all in the name of progress and so I was pushing on just like I always do.

The swelling was bad, though. Like, I looked like I was maybe trying to grow a second head. Out of the side of my head. My friends insisted it wasn’t THAT bad at the time, but now that it’s passed I think we can all agree I looked straight up scary. By Sunday, I was panicking a little. I was potentially restarting class the next day, and my face was enormous. But my neck area was probably the most swollen, and had become more and more painful. Dr. Byrne, my wonderful Hopkins surgeon had set me up to see a former fellow of his, Dr. Oyer at MUSC. The way I like explaining it is that Dr. Byrne (my surgeon) is kind of like Dr. Oyer’s (at MUSC) medical dad. I was to see him Wednesday to get my stitches out, 8 days after my surgery.

Monday morning, I begged Dr. Byrne to get me in to see Dr. Oyer that day rather than Wednesday, so that I could get this swelling checked out. I had sent some pictures to Dr. Byrne and he agreed that it was more than normal, but there wasn’t reason for panic quite yet.

My angel of a roommate went with me to this appointment Monday morning, because at that point it had been 7 days since I had eaten anything besides broth, I was on lots of pain meds, and I was terrified about what was going on with me. I explained my concerns to Dr. Oyer, and he agreed that this thing in my neck was likely a hematoma; a collection of blood near my stitches post-surgery that needed to get taken care of ASAP. He drained it with a syringe, and got nearly 60 CCs of blood out of the side of my neck, and the occasional whoosh of air. Free blood and air are not things people typically want floating around their neck.

I had a CT scan done immediately after the appointment, and it showed that the blood/air collection went deeper and farther into my neck/throat area than what he originally saw. It also showed a small tear in my airway, and that would provide a route for all of this air and blood to escape into my tissue. This tear probably happened during the intubation for the original surgery, and it didn’t cause any problems until several days after.

The most aggressive and comprehensive way to treat this was for me to be admitted to MUSC hospital that Monday, where they gave me a feeding tube through my nose into my stomach and that is how I have been receiving my meals. This allows my throat to completely rest and repair. On Tuesday, only 1 week after my first surgery, they re-opened my sutures and rinsed out all of the blood and infection and air that had been culminating in that area, and so I was given a new, clean-inside face to better recover from my original surgery with.

I was in MUSC from Monday to Friday, successfully missing an entire week of school. Luckily, my mom was able to fly in very late Monday, and was able to make sure I didn’t have to be alone during the scary time before my surgery. My amazing friends, medal-worthy boyfriend, and even one of my professors, made sure that I never felt scared or alone or helpless, and it just really reinforced that I have the most amazing inner circle.

I am now home from the hospital, but I still have this feeding tube up my nose until early next week to allow my throat to completely heal. It’s incredibly annoying and I am hangry ALL THE TIME but it’s been a very effective diet. Maybe not one I would recommend to a friend.

Now that this is all fading into the distance, I WILL say that I have no regrets about going through with this surgery. Maybe it was a lot more difficult than it needed to be, but I pushed through it. I didn’t sacrifice or compromise my end goal, but had to endure a little more hard stuff to get there. Ultimately though, I feel much more confident in the way that I look, and I feel much more like myself.

 

 

PS. The image attached here is of me speaking to the high school women of the Porter- Gaud school on how my idea of beauty has changed as a result of my accident. An amazing opportunity and an incredible group of women!

Facing it, but not for long

This blog title is about to be a lot less punny. Alright, guys. March 20th will be the day. The day I get the surgery that will HELP me feel slightly back to normal. It won’t fix my face, or take away the pain I have endured in dealing with my recovery thus far. It won’t turn back time and stop my accident from happening. But it will make me feel more like me.

I will be having the surgery at Johns Hopkins, and my surgeon will be Dr. Patrick Byrne. I told him that if he fucks up my face, I would put him on blast via my blog. Hopefully I will be singing his praises instead. They will be performing a cross-face nerve graft, a 12-7 nerve transfer, and a temporalis (T3) transfer. If you want to know exactly what that stuff does, I encourage you so watch this video: https://www.youtube.com/watch?time_continue=1&v=WI0hvKyglbA . To make a long story short, they will be rearranging some nerves but that may or may not work; they will also be transferring a muscle in my face to my mouth, and that will immediately give me some symmetry.

The people that know me well know that my ‘party trick’ is that I can make myself smile while biting down. This is a typical result seen in the ‘5-7’ nerve transfer (similar to what I will be getting). But the weirdest part is, I’ve never had that surgery. This means that something funky is going on with my nerves, but no one is sure exactly what that is. Over and over again, this trick has stumped surgeons of all specialties, but especially the ones that should know the answer.

The thing that was most comforting about my meeting with Dr. Byrne, aside from the fact that he’s brilliant and famous and so nice, was that he was confused, but also amused. I was this cool puzzle for him to play with, and at the end of it his prize is that he got to help another human improve their quality of life, and overall confidence. He will help my outside start to match my inside again.

What about my eye? No, he will not open it back up unfortunately. That’s another surgeon’s territory (my eye surgeon). His concern is with my smile, and that’s really it. The total surgery time will be about 3 hours altogether, and it’s an outpatient procedure, so I will be going home the same day as I undergo the surgery. I will be pretty swollen for the first week or so, but luckily I will be on spring break and able to hide out for the very worst of it. One of the staff members said the swelling would appear as ‘cabbage patch kid-like.’ That makes me a little nervous, because that sounds pretty weird looking. But you know what’s weirder looking? Having a half-paralyzed face. I’ll take this trade.

I know this is soon, but I assure you that I have spent every minute of every day the past three months imagining this surgery. I’m ready for my new face. Are you?

My family and close friends that I’ve already told have reacted in the best way possible, and their support means the world to me. That being said, the next few weeks are going to be pretty tough. Not the toughest I have ever faced, but tough. Everyone’s continued support would be much appreciated, but I know I don’t even need to ask. You guys are absolutely amazing.

Bad Hair Days.

The other day, I was watching Grey’s Anatomy and the show did what it does best. It got me, SO GOOD. I’ll spare you the details , but the show wraps with a character’s narrative over the closing scenes. In it, she says “did you make the most of this terrible, beautiful life? Did you let go of all the things that held you back? So you can hold on to what matters most?”

These lines both filled me with excitement, and made me cry. Maybe the crying was due to the climactic music in the background. I know I’ve made fun of myself for having this outlook that’s very expected of someone who’s recently been confronted by their mortality; the way I make the most of my life looks quite different from how others may see it.

Maybe it is true that “nobody looks back on their life and remembers the nights they got plenty of sleep.” But you know what else I would remember when I look back on my life? The day I graduated college. The first patient I lost. The day I watched my little brother graduate from MIT. Those are the things I will remember, the things that mean so much to me. That’s how I will make the most of my life. I absolutely cannot expect anyone else my age to feel the same as I do. I remember feeling totally invincible, like I could do it all. I worried about things like bad hair days, or annoying roommates. I could afford to be inconvenienced by day-to-day-things, because there was always a guarantee that tomorrow would be there.

Until there wasn’t. That day I nearly died, part of me DID die. But it’s ok, I’m better for it. The part of me that avoided wearing out-of-season shoes, and that was totally fine with being an average student, that part died. I will never, ever, say that any part of my accident was a blessing, but it did strengthen me in ways I wouldn’t ever have learned any other way.

Every day, it’s like having a bad hair day, but on my face. Not ideal, doesn’t look great, but I have to leave the house and get on with my life. Just like yucky hair, I wish I could just cover it up and nobody would notice it, but unlike yucky hair, I can’t just start over the next time I shower. This is one of the things I’ve had to let go of, and as you can see, I’m still working some things out. Towards the end of the school year last year, I kind of hit a wall with my frustration over my face.

Every morning, I would stand in front of the mirror, with my eyes cast down, and hope I would look up and see the old me. And every morning, I went through the same despair. It was exhausting just existing, and I just kind of decided this wasn’t worth it. Spring semester was probably my most rigorous academic semester ever, and I had to focus all of my spare energy on being successful in school without losing it. My face, it is what it is and it isn’t what it isn’t.I’m so thankful for my friends and family who listen to me whine, but am also grateful for those who won’t tolerate my wallowing. Really, I’m just grateful for anyone who’e still around.

I apologize for my lengthy silence. I am (happily) neck-deep in studying during this last semester of school, wrapping everything up. I am officially employed, and the light at the end of the tunnel is in sight!

 

“I love Smiling, Smiling’s My Favorite.”

It’s 6pm in Newport Beach, CA. I’m sitting at my laptop looking at older photos of me with friends on facebook, sobbing.

In the last few days, I went to see a facial nerve specialist; cases like mine are ALL she looks at. In that visit, my deepest, most painful fear was spoken to me out loud. She told me that, based on my progress over time, it is incredibly unlikely that my facial nerve will continue to improve beyond the progress that it’s made. There are surgical options to help me look somewhat more symmetrical, but there will be no miracles here (like my face healing on its own), nearly two years after the initial injury.

I am sure that some of you are balking at the idea of me getting cosmetic surgery to fix this, but I would kindly ask you to keep that opinion to yourself. I don’t have it in me to have this conversation multiple times, so let me explain myself this once. I cannot expect you to understand what it feels like to have a souvenir of the most devastating experience of my life staring back at me in the mirror every morning. For me, this surgery (or any of the surgical options presented to me) is not just a cosmetic one. Me getting even just a non-droopy smile back would help me move one step closer from this horrible thing.

This accident stripped me of so many things, but my smile? My most outstanding quality? Sometimes, I will be smiling huge in a picture because I was laughing or talking, but it’s only one side. The result is not this warm, happy smile that it used to be, but a grotesque display of the extremity of my facial paralysis.

There are several surgical options (as I mentioned earlier), all of which entail some form of nerve or muscle transfer from somewhere within my own body. Some options are more invasive than others, and some would take effect more quickly than others. The core purpose of any of the surgeries is to give me a symmetrical, closed-mouth smile A-La Mona Lisa. I will never be able to smile my excited, toothy smile that came to be my trademark to all who knew me.

I would love for my body to take care of this on its own, but that would take a true miracle, and I’m just not willing to wait around for my life to begin any longer. So, at this point I have wrapped my head around the prospect of surgery, it’s just a matter of choosing the best one for me. Just like everything else related to this accident (and life in general), the thing that I want is on the other side of the shitty stuff. I want an even smile. Surgery can get me to an even smile. Therefore, I want surgery. I’m going to do the research, ask the important questions, and interview the most skilled surgeons.

The alternative is to quit. That’s never been an option. I could also just decide to be okay with how I look now, but it’s truly not about that. What this is about, is being truly on the other side of the biggest struggle of my life. It’s difficult to muddle through this thought process without any influence from my family and friends, but they are giving me this space because they truly don’t have a desire for me to be any different. I know that I have their support with whatever I end up doing, but this decision is truly my own. I’m the one driving here.