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.

Thanks.

I know this post is coming later than usual, but it’s mostly because I haven’t had much inspiration which, based on my most recent content, is probably a good thing. I usually only write when I’m needing to sort out some issue I’m having, but I have also just been too busy to allow really anything to take up too much real estate in my mind.

If anyone was keeping track, I may have mentioned to you that my eye doctor told me three months ago that he would unstitch my eye in three months. Based on the fact that this is an actual post and not a call for mascara recommendations, you can probably guess that I am typing this with one eye. Although the nerve that controls the blinking is showing promising progress, the nerve that makes my eye track has yet to get its shit together. This means that even though I can blink in theory, my eye is of no use to me right now anyway because it cannot track, so why bother opening it and putting the health of my cornea at risk?

I’m sure some of you are wondering why they don’t open it so that my tracking muscles can ‘get stronger’ and that it will start working more quickly, but this isn’t actually how that works. Since eye movements are mostly involuntary, as soon as the muscle CAN do work, it will. Anyway, because of all these reasons my eye doctor did not open my eye. One open and one closed eye would definitely not be as strange looking as one straight and one crossed eye, so I can’t argue with his logic for now. I will go and see him again in six months, and hopefully will get a different response.

It was also just Thanksgiving! Last year’s and this year’s Thanksgivings have been very different for me. They carry more weight (what other 20-something is genuinely thankful they survived that particular year, every year?). I’ve kind of adopted a mindset of gratitude into my daily life. Every year, my family goes around and lists things they are thankful for. Usually a day or two before I will begin to reflect on things I am thankful for (beyond ‘not being a Turkey’). But I have found that now, as I go about my days, I will (try) to keep a running list of things I’m thankful for on that particular day. I would highly recommend it to anyone.

That being said, it’s not a cure-all to super shitty days. Sometimes I don’t feel grateful for ANYTHING, and I just want to pull the covers back over my head and wake up when I have my shit together. This blessing-disguised-as-a-curse of an accident has taught me that the only way out is though. Going back to sleep isn’t going to stop the day from starting, so it’s up to me to make it great.

The day I saw my eye doctor, I cried on and off nearly the entire day after my appointment. Nothing could get me out of my funk. I gave myself a few hours to be a completely miserable companion to my mom (who was my ride to/from LA, so she couldn’t leave me). Once I was able to at least talk to another human without crying, I went and visited one of my very favorite nurses that I still am in contact with. We went and visited her while she was working in the stroke unit.

The smell of the unit is homey and familiar, though not necessarily in a good way. I smell the hand sanitizer, a dispenser on every entry. I hear the hums and beeps of the machines in people’s rooms, some monitoring the patient attached to it, some keeping them alive. Walking down the hall into the unit, I see the beautiful photographs of nature scenes. I remember being rolled past those photos in my hospital bed, wishing more than anything that I could transport to one of those scenes.

Visiting my staff friends on the unit is always bittersweet. I am always overwhelmed with relief that I am no longer a patient, but I am also brought back to the too-recent time when I was. This visit was more sweet than bitter, because I was also able to see one particular patient care technician that I remember more vividly from my time at UCLA. When she recognized me, she was on the verge of tears. This woman changed my diapers (yeah, it happened), fielded every question from my family, apologized when I would cry from the pain in my collarbones as if there was something she could do.

It is always so humbling to go back and visit, it not only serves as a reminder of my lowest low, but the gratitude I feel for everyone working in that unit leaves me breathless. I am so thankful for every single person who stuck me with a needle, wiped my ass, or told me I wasn’t allowed to have water for the 1000000th time. My mom always jokes that I was thanking the people that came in to take my blood at 2AM, but I truly did. I sure wouldn’t want that job, the least I can do is say thanks.

So every day, I say thanks. Not to anyone in particular or about anything in particular, thanks is just my constant state of being. Today, I’m saying thanks for reading, thanks for caring.

Shouldn’t this part be over?

I’ve half-written so many posts in the last few weeks, but then I get distracted before I am able to finish my thought and the magic is over.

Right now, there are thousands of thoughts running through my head. I wish it were an appropriate hour to go to bed so I could get some quiet and collect my thoughts (it’s 1 in the afternoon). I also want to tear my hair out and pace until there’s a hole in the carpet. So, I’m here writing this post instead. I just had an appointment with the doctor who performed surgery on my facial nerve in April of 2016, just to check in regarding the progress being made by my nerves. I’ve seen him a handful of times since my surgery, but I’m feeling like I shouldn’t need to still be following up with him. Shouldn’t this part be over?

He wasn’t in any way negative about how slowly my progress is going, but I do think that he (and I) figured we would see more significant improvement by now. Ultimately, my face issue WILL get resolved, I just hadn’t considered anything other than a full recovery as the outcome. I guess because of the degree of my nerve damage, there’s a chance that only SOME of the axons (nerve fibers) regenerate, but not enough to make my face move again. There’s also the chance that nothing else will progress, but that would make even less sense than a complete, seamless recovery.

This problem of partial regeneration, or even no further regeneration, is fixable. But it’s more surgery and it won’t give me my old face back. I feel like I’ve hit a wall with the amount of hope and optimism I can muster for a cause that’s showing no signs of improvement, but thinking about surgery instead of waiting out the healing process seems too extreme.

When I’m home again in December, I will get another EMG (nerve test), and that will give me more information as far as the amount and degree of regeneration that’s going on, then I can plan from there. I’m just really fucking tired, and I want off this emotional rollercoaster now, please.

I guess, based the tone of these last few posts, you could say I’m officially no longer riding that post-near-death-experience high. That being said, there is a lot of really great stuff happening in my life that just doesn’t inspire their own blog posts. The other day, I successfully wore wedges on grass ALL day and didn’t eat shit once, so that was pretty cool. But I’m not sure what more I could write about that one. Sorry if these posts are kind of a bummer, but this IS my life and sometimes the cost of authenticity is a lack of rainbows and butterflies.

547.5 Days.

So, the 13th (of September) was the 1.5-year (547.5 days, if anyone was wondering) anniversary of my accident, but I didn’t even notice. It’s not that I’m crazy busy but if I’m being honest, I feel like the only thing that’s progressing at this point is the time.

I’m talking about my face. It’s time for this part of my recovery to be over.

The sun rises. The sun sets. Every day, I feel like I am just waiting for this last remnant of my accident to crumble to dust and blow away with the wind, just like everything else had. But every day, it doesn’t happen.

When I was first recovering from this accident, everything moved pretty quickly. I made such extreme progress in such a short amount of time, but I feel like now I’m just sitting on my hands waiting for my face to catch up with all of the other milestones I’ve reached. Because of this accident, I am truly living each day. That being said, there’s a voice in the back of my head that whispers how much sweeter this will be when I’m back to ‘normal’.

I use ‘normal’ loosely. I’m talking about being truly myself again, the outside Amber matching the inside Amber. Internally, I bear the same scars you’ll see on my collarbones, my throat, my face. But when I look in the mirror, I still don’t look like myself. I don’t look confident, fearless. I feel those things, but I don’t look those things.

It’s not even about feeling ‘beautiful’ or ‘pretty’; it’s difficult to put into words just how unnerving it is to look in the mirror, knowing everything that you are inside, but not seeing it. It’s like my reflection is wearing a paper bag over her head, but I can’t take it off. I just have to have faith I’m under that stupid paper bag. This has nothing to do with how I am treated by others, this is purely an issue I have created for myself that I have to get over.

I get pins and needles sometimes, or itches, or electric-shock feelings, but these sensations I have learned don’t really go along with any remarkable progress. It feels like every time I see some progress, all that activity goes dark the moment I take notice and begin to have some hope.

Haven’t I earned my stripes yet? I could choose to be bitter about the fact that I have to be strategic about what heels I wear to an event so I make sure I don’t look like a massive klutz in front of people who don’t know me. I could choose to be bitter about the fact that I’ve burnt my forehead with my hairdryer because I didn’t feel that it was too close. I could choose to be bitter about the fact that I have to ask my friends to repeat what they said what feels like 1000 times.

But do I? No. But I’m tired, man. I’m ready for this to be over, I’m done with ‘recovery’. Being bitter is easier than fighting these demons, but it will suck the joy out of my life. And if I can’t hang on to that, then I’d have nothing. So I buy heels I only would have deemed fit for an ‘old lady’ two years ago. And deal with the awkward forehead burns. And crack jokes about my deafness. I am beautiful because I am strong, and because I have been through hell and back but haven’t let the fire consume me.

Sorry this was slightly more morose than usual and quite delayed, readjusting to my school routine has been a rollercoaster, especially with all of this extreme weather we have been having! Thanks for reading all the way to here if you made it this far.

Giving a F*ck (or not)

Content warning… Sorry for all the F bombs. There isn’t a better way to explain my point, I hope you’ll forgive me.

I was talking with a friend about ‘giving a fuck’ or not. She made the point that we only have so many fucks to give, and that has stuck with me ever since, because it’s so true. We have a finite number of fucks to give, but it’s up to us to decide how we spend them. Now let me clarify: in my head, things you care about and things you give your fucks to are different.

I CARE that I don’t look like myself at this point in time, but I give no fucks about it. What I do give a fuck about is that it’s going to come back, and for now it’s just the last, lingering trace of this terrible thing I can’t wait to leave behind.

It doesn’t necessarily have to be something big, either. For example, I assist with stroke research in a lab at the Medical University of South Carolina (MUSC) in downtown Charleston. Before I realized that it was just the nature of research in general, I felt like I was CONSTANTLY screwing up. I would observe my mentor doing something, take detailed notes, go home and copy them into a different notebook, then read over them before I went in to lab. Even though I was just feeling like a noob among all these brilliant scientists, I was making noob mistakes and it was so stressful. I still mess up plenty, but I have very VERY patient mentors to help me grow.

This is something I give a fuck about. Not only because it’s cool as shit, but because it’s a very unique challenge for me. In case you haven’t noticed, I’m a problem-solver. I get that from my mom. Stroke left me half-paralyzed? Figure out how to walk again. Unhappy with my grades? Study harder (and smarter). A boy bumming me out? Bye. Me being a total research neophyte was a problem that couldn’t be solved any other way than just experience. I was going to just have to ride out this awkward learning stage. I don’t feel like I’m out of it yet, but maybe that’s for the best. Maybe my fear of screwing up will keep me good. I’ll keep you posted.

I won’t implode if I do fail, but it’s never comfortable for anyone and I would most definitely like to avoid it as much as possible. All I’m saying is, don’t let something stupid take one of your fucks. YOU are the master of your fucks. Give them to the things in your life that truly deserve them, and let the rest roll off your back. It’s all gravy.

Also, if anyone is curious, my lab’s website (https://shihlab.mystagingwebsite.com/) explains the stuff we research much better than I dare even try.

ALSO also, I realize that this post plays off of the point of the book The Subtle Art of Not Giving a F*ck by Mark Manson

This Time Last Year…

I’m sitting on the plane on my way back to school reflecting on where I was this time last year. My dad and I were driving my car from California back to Charleston, because we’d had it shipped west so that I could learn how to drive it with one eye. Since I had so much time on my hands (enough to watch 12 seasons of Grey’s Anatomy), I planned every day of our drive back INCLUDING 3 meals a day. Our trip had been delayed slightly because I had to see a stroke neurologist before I left, and the only available time he had was right before we had to leave. The purpose of the visit was just to discuss what the long-term implications were of my stroke and occluded carotid. It was mostly things I had already heard; take aspirin, periodic imaging studies of my blood flow, and that the clot in my carotid was far too big to do anything with except watch.

I was extremely nervous to get back to a full-on ‘normal’ life again, but I was craving something that felt familiar in the midst of everything that had changed in my life. I was re-taking some of the classes that I had been in the semester I ended up withdrawing from, so that combined with my new-found motivation made the academics the least of my worries.

Sometime during the first few weeks of class, I was walking from class to the library, and I fell victim to Charleston’s famously uneven sidewalks. For lack of a better word, I ate shit. People stopped and asked if I was ok and I said yes, only my ego was bruised. I hurried to the library and cried in the bathroom. The actual fall wasn’t what I was so upset about; locals see people do the ‘Charleston shuffle’ all the time. For me, it was probably a reaction that came from me feeling so vulnerable, but it just felt like such a defeat. I had spent my entire summer training to walk in heels and be able to kneel and tie my shoe while looking like a normal person, and I felt like I should have been able to handle a stupid uneven sidewalk.

So aside from the occasional issues with remaining upright, I was mostly worried about how my friends, teammates, and sorority sisters would react to my new reality, but I was pleasantly surprised. I’m a little more ‘spacey’ and less outgoing and no one can talk to me into my right ear, but everyone close to me took it all in stride. I cannot begin to describe my relief at this realization. From fending off drunk, flailing freshmen at a party to pretending not to notice when I would manage to get food all over my face, I have amazing friends. I have been surprised by the positivity and support I have received from friends, family, and even people I thought felt lukewarm-at-best about me. So thank you for pleasantly surprising me and restoring my faith in humanity. Anyone who is reading this who feels like it could apply to them, it probably does. So thank you, again.