Full Circle

Today, I saw my neurosurgeon. Not from a hospital bed, not even in a hospital setting. I got into work a little early, and saw a message that our chief medical officer (CMO) would be around this morning. The CMO of my company also happens to be the man who helped save my life two years ago at UCLA.

I actually passed him in the hallway before he was formally introduced to me. His face was familiar but he wasn’t wearing a lab coat like I had always seen him, so I didn’t recognize him out of context. When he was being shown around our office, there weren’t many other people around (it’s 9AM at a startup). When we were ‘introduced’, I said “good to see you again” instead of ‘nice to meet you.’ I think THAT is when my face clicked. He had no idea that I was working and graduated at all, let alone working for a company that HE helped start.

I never actually met Dr. Martin consciously until after I had left the hospital, at a follow-up visit. When I was his hospital patient, I was (mostly) unconscious, and he would come and observe me in the middle of the night. So, to ‘meet’ him all over again, this time as professional colleagues, was incredibly gratifying. We were as close to eye-to-eye as a 5’2” girl can get with a 6’6” man, and we were talking about WORK. Not my surgical plan. Not my ongoing disability.

This man’s only job is to fix someone’s brain. He looks at the insides of people’s heads all day, every day. Did he have to field my mom’s 100 questions at 3AM in the ICU? No. Did he have to counsel my subsequent surgeons on how best to handle my case? No. Out of the thousands of heads he’s operated on, did he have to remember mine? No. But he did.

He has gotten to see me come from a nearly-vegetative, but smiling, girl in that hospital bed to a college-graduated, research colleague. Hell, this isn’t full circle, this is like 1000 revolutions around the sun. He was thrilled to see me doing well, but even more excited to have me working for him. I think, for his profession, he sees a lot of lost hope. He told me that I am one of the most resilient people he knows, that I have only gotten stronger. I  think that I am one of those few cases he looks back on to remember that it’s not always all doom and gloom. For that I am as thankful as he is.

Going With Your Gut

Another, rather long break from writing! I should preface this post with this: I am currently on a plane to New York (City), where I will undergo further cosmetic surgery, with a different surgeon from the one I saw in March. By the time you are reading this, I am likely out of the surgery. To answer some of the questions you may be thinking: This procedure isn’t actually cosmetic at all, but reconstructive. There are taking donor nerve out of my heel, attaching it to a branch of my ‘good’ nerve, and threading it under my skin and muscles to my ‘bad’ side. Then, they close me up and let it marinade for 6-12 months. This is phase one, so I will be getting minimal aesthetic improvement.

6-12 months from July 20th, they will take a piece of muscle and blood vessel from my thigh and attach it to my new nerve (that has been growing across my face). Then, some months after THAT, I will be able to smile spontaneously.

This is the surgery that I opted out of initially, because it will take a long time, and each step has to go well before the next to be successful. But, here I am. I’m over it. I’m unwilling to accept this as my reality. You may have noticed that a different surgeon has taken over my reconstruction. I am incredibly lucky to have the ability to be connected to such incredible resources, and beyond a certain point there is no way to tell where to go. My rationale for this move is an extensive pro/con list, but I can say simply that this surgeon is at least the same caliber as my last, so it’s time to try something different.

What am I afraid of here? That it fails? That I develop an extremely dangerous post-surgical complication that leads to more surgery? Been there. Done that. Next. I am not going to say that was the worst because it seems that THERE IS ALWAYS WORSE, but that was pretty bad. And my psyche survived in spite of those things. I didn’t think that I could deal with putting myself on an OR table and having it fail, until it was happening to me.

I won’t say it was easy, or that I was strong through it all. Those closest to me witnessed my insecurity, my pain, my post-anesthesia hanger. They know. Sometimes I still cry about the unfairness of it all. But I wouldn’t have thought that I could have survived my accident, and I did. I wouldn’t have thought that I would survive a failed surgery, but I did. Some days I don’t even think I’ll survive a day or work, but I do.

My point is, go with your gut and don’t sell yourself short. I know people say this all the time, but I am living proof that we’re a lot stronger than we think. I still count on my fingers sometimes (a lot), but I’m also a research scientist at a biotechnology company that will change the world. I refuse to eat raw tomatoes but am saying yes to having 3+ surgeries this year (more on that later).

I have picked my battles and what doesn’t kill me, better run.

 

 

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.