Getting Pretty Good at This.

Before March of 2016, I was afraid to get flu shots or my blood taken. Fast forward to October of 2018. Six surgeries. I have had six surgeries. I’m sitting here planning my seventh like I would a lunch date, negotiating everyone’s tricky schedules. Except it’s not other guests I am accommodating, it’s multiple surgeons.

Next up on the list is a surgery that will help me regain some feeling in my eye, called corneal neurotization. It’s basically the same thing I had done for my smile, but for my eye. They take my (other) foot nerve, and graft it from my forehead on my left side to my eye on the right. Ideally, my forehead will sprout a new nerve branch through the graft over to my right ‘numb’ eye. This regenerates for 6-9 months before anything changes. If this is successful, my cornea will be ‘nourished’ by the nerve supply, and I will have feeling again. Simple as this sounds, there’s a bit of a catch.

This surgery has been performed a handful of times- less than 50, I’d venture, and only twice at UCLA, ever. These are not ideal stats, but let me explain why I will be the next case at UCLA. The surgery was invented in Toronto, Canada. They have performed 22 cases total. Ever. Nobody can deny that 22 is more than 2, however I know better than anyone that pursuing the perceived best-in-the-field does not guarantee the optimal result. Because this procedure is so new, I know that I’m not going to find a surgeon who looks me in the eye and tells me this is going to work out. Because nobody knows that.

There are other factors at play here, too. Dr. Goldberg will actually be performing some of the more intricate parts of the surgery, and I trust him implicitly. I trust the ‘main’ surgeon as well, but I’ll trust him even more after he’s perfectly executed this procedure. Objectively, this is low-risk. I lose my other foot nerve as a viable option for some unforeseen surgery, and I gain a few (more) scars. I am confident in UCLA as a hospital, and I am confident in the team I will have working with me.

Anyone who knows me, knows that I don’t like sitting on my hands for long. There’s no rush to do this surgery, but there’s also no good reason to wait. So I’m doing it.

Time to Run

Last week, I had a surgery to help my ‘tracking’, to help correct my double vision. They do this on little kids all the time, you may even know someone who’s had it. For those of you who didn’t know this about me, my right eye was basically crossed, like the opposite of a lazy eye. This causes extreme double vision- like, the two images are not even close. This is a really common issue after head trauma, but usually resolves on its own. Like everything else, I waited two years for it to wake up, then decided it was time to get moving.

The surgery couldn’t restore my nerve function, but the fantastic surgeons at UCLA were able to rearrange my eye muscles so it’s at least straight. I still have slight double vision and will likely wear special glasses, but I will be able to look someone square in the eye (once they’re BOTH open). When I had pitched this idea to the surgeon who originally sewed my eye shut (Dr. Goldberg), he was not thrilled about it. He wanted me to wait just a little longer, give it one more chance. He came and checked my eye every day that I was in the hospital at UCLA with about 17 residents and medical students behind him, like ducklings. I would feel like a science project laying in my bed with all of these curious eyes on me.

The way that I was able to feel powerful was when Dr. Goldberg would quiz me on the cranial nerves in front of the students. I had known them before, but I became an expert as I was living through the issues that arise when they are interrupted. I would recite them seamlessly, and would pretend that maybe some of these brilliant, young, able-bodied students were envious of the feeble girl in the hospital bed. When he pushed back about pursuing surgery, I asked him what my other options were, because I was NOT going to live my life with one eye. I started to cry, and I think that’s when he realized how serious I was. In the hospital, I was stoic and positive through every poke, prod, every “sorry sweetie, it’s almost over.” But I was tired, and mad.

In his defense, he has tried to un-do my eye, let me have a little freedom, and I got a minor infection. But this is a much more supervised, structured path to freedom. We started with this tracking surgery. A very predictable, straightforward procedure and he was in the room to stitch my lid closed as soon as Dr. Demer was finished with the muscles. That was the deal I made with him, very low-risk for my cornea, and more-delayed gain for me. It was a problem that would need to be fixed eventually, so why not start with it? Baby steps. I spent more energy talking him into the surgery than I did myself.

When I saw both surgeons (separately) at my post-op appointment today, they were practically levitating. I don’t think either of them could have fathomed a better result. I would have loved for the double vision to go away altogether, but my cornea is clear and healthy, and my eye APPEARS straight. My lid is still mostly closed, but I have a peephole in the center so that I can actually use my eye. This is best-case scenario. Now, I need a nerve graft to my eye, the next surgery. This will help give me that ‘blink’ reflex to protect my cornea, something I do not have since I have no feeling in my right eye.

This is a very new, but very promising surgery where they take a piece of nerve from my (other) foot, and connect it from my good eye to my bad eye. Basically, the eye-version of the surgery I had in July. Dr. Goldberg, my very conservative surgeon who doesn’t like taking big risks, is rearing to get going on this next surgery. I don’t know if it was the ease with which I healed from this surgery, or the positive momentum of my recovery, or my attitude, but I’m not questioning it.

I feel like, for the past year, I’ve been saying “ready when you are” to the world. And now, the world is ready. The ground is rising to meet my feet, and it’s time to run.

Watch Me.

The other day, I spent some time thinking about how I would feel about my current job if my accident had never happened. Sure, I would have been equally as interested in my work but the first thing that occurred to me was that I wouldn’t have ever even gotten this job. Virtually everything that led me here has been a result of my accident. The fact that my doctors are involved with the company, the fact that the mission is so personal to me, even just the fact that it’s a research position is not something I would have gone for had it not been for my research experience post-accident in undergrad.

But, my job would have also scared the shit out of me. There has been so much that I have learned over these first 3 months, but there’s also still much to be learned. I would have chickened out. Learning to program in python within 3 months? No way, I can’t do that. Preparing posters to be presented at international conferences? That’s awfully ambitious. No, this is not me telling you how great my job is. This is me explaining that, faced with challenge after challenge, I have accepted with a smile and delivered. The weird thing is, people don’t normally live like this. Who is motivated by looming, seemingly-impossible obstacles? Me. I am.

This being said, you readers have heard a good amount of venting on here as well. So what’s the difference between those posts and this one? There are things you can control and there are things you can’t. When I did my first self-review at my job, I ranked my skills as ‘below expectations’. My manager was very quick to correct that- the ‘skill’ I did have was a willingness to learn, to figure it out. I was smart ENOUGH to get this job, and I am smart ENOUGH to figure out how to get better at it as I go.

When I begin looking into which medical schools I should apply to, there will be no safety schools, or even mid-range schools. They are all a huge fucking reach. But that’s ok. Someone recently told me that comparing myself to other pre-med students is like asking a fish to climb a tree- there’s absolutely no logic there.

I would also say that my skills as a potential medical student are ‘below expectations’. But, just like I am doing here, I am willing to figure it out. I know that becoming a doctor isn’t exactly something you just ‘figure out’, but I will. Watch me.

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.