I know it’s been a while but contrary to popular belief, I am not under a conservatorship.
I have shared a lot, but there is so much more. I am figuring it out as I go.
“Everyone you meet is fighting a battle you know nothing about. Be kind. ”
Here it goes. Breaking the silence, or whatever. The more time that passes, the harder it is to tap into my feelings and reality. I’d rather pretend it didn’t happen. That’s almost impossible, when my mere appearance is a daily reminder. I think at this point, the biggest thing holding back my recovery (besides my betraying brain) is me and my inability to accept a “new normal”. Did I mention how much I hate that saying? It seemed easier at the time to just avoid people, avoid the looks and questions all together (keywords: at the time). Hiding was only a temporary solution.
In the beginning, strangers staring at me was one of the worst parts. People would talk about me so loud and think they were whispering (we all know someone like this). Mostly, it’s the “aww, what do you think happened?” people. Mind your business, Karen. Just a little PSA: if you look at someone and find yourself feeling curious or badly, just look away. It’s really not your business, and it really is their life. Imagine for just a minute the tables were turned. The stares burn, and just because we don’t make eye contact doesn’t mean I don’t know you’re staring. In an unexpected turn of events, it’s almost become harder seeing people I know than strangers. Strangers are curious, people you know are sorry. Also curious, but mostly sorry. You know that look everyone gave Taylor Swift when Kanye West interrupted her acceptance speech? It’s like that, but it isn’t something anyone did or anyone can help. When you go through something like this, people just don’t know what to expect or how to react. Join the club. I’d like to think the uncertainty is a natural response.
This is the look. Not as furry. and usually not as cute, but other than that, pretty spot on.
I haven’t smiled in 515 days. Think about how often you smile. Genuinely happy, in love, proud, even sad and mad we hide with a smile. I can’t. It’s been devastating to say the least, because if you know me, I hardly ever stopped.
I went 492 days without blinking. On July 2, after being awake during a surgery where they cut open my eye lid and put in a platinum weight, I blinked. I closed my eyes over night when I slept. Who knew closing your eyes when you sleep could be so magical?
The walking, I can handle. The talking, I can handle. No driving, no working, I can handle. But not even being able to smile at my son is something I’ll never be okay with. Not smiling at my soon-to-be husband when I walk down the aisle is something I’ll never be okay with.
I am not accepting these disabilities as the price I paid to survive.
** I guess this is where I should warn you I am going to share personal pictures from before and after my recoveries. ** I will spare you guys the gorey stuff, but it still isn’t the prettiest. This is something I have been scared to do and held back for as long as I could, but I feel like it is necessary at this point; I have been self-isolating for too long. Those of you who quarantined recently know that isolation is not fun or healthy for your mentality. This quarantine was nothing new for me, except I had some company and wasn’t missing out on things because things were not happening.
I had realignment surgery on my eye February 11. My left eye was completely crossed and did not move. I have 6th & 7th cranial nerve palsy, a paralyzed eye and a paralyzed face. I can vividly remember crying to my mom “I can take just the face. I can take just the eye. The face and the eye, I don’t even recognize myself”. Back to the eye surgery- I went under, my surgeon went behind my eyes, tightened and pulled the nerves and muscles so my eye would move closer to midline. That was an ugly one. I was so excited for this surgery, and it was the start to my confidence recovery. A total game changer. I could finally look people in the eyes. When people stared at me and thought they were whispering, I could shoot them a look. That was more than I can explain. I had gone to vision therapy for almost 3 months, opthalmologists, optometrists, more neurologists, occupational and physical therapists, and it wasn’t until I met the right doctor that she told me “I wish you had come sooner”, after a year of “patience”, “time will tell”, “nerves heal slow”, “nobody will touch your eye before a year”. And just like that, within three weeks of meeting this doctor, she changed my life and fueled my fight. After seeing double for almost a year, having no depth perception, relearning how to walk with one eye, I was finally on the right path, a path with answers. Finally hopeful, to say the least.
#NoFilter. This definitely would’ve been cooler if it was accompanied by some fangs, am I right?
I had a cross facial nerve graft on March 11, right before Covid shut everything down. They cut open my face and harvested the facial nerve. Then they made two incisions in my leg, one at the top of my thigh and one down by ankle, and took a long and healthy nerve from my leg. Then they cut open the other side of my face near my ears so both sides were exposed and hooked that nerve up to a working nerve and strung it along my face. They made two incisions inside my mouth to pull it through, then connected the nerve to the other side of my face. They also took fascia from my thigh, and put it in my face. There was an incision near my nose where the fascia was placed, and it was also placed near my eye. I have a nerve from my leg and two pieces of my thigh in my face. As my sister would say, I’ve got my thigh on you. We were told that this surgery would be about 6 hours, so you can understand my moms scare when 10 1/2 hours have gone by and she hasn’t heard a word. Waking up from that surgery was AWFUL. My eye hadn’t fully healed yet, and something got in it during surgery. Pain isn’t even an appropriate word to describe that feeling when I woke up. Every scene I ever saw in a movie or show of a person getting their head smashed onto the concrete flooded my mind. It’s the only way to describe what I felt. Like someone took a handful of my hair and smashed my head on the sidewalk. And the crazy part? My leg hurt the worst. I had two drains coming out of my face and my leg. God bless my mom, I can’t say it enough, who emptied my bloody drains every few hours *dry heaves* . I was going to show you guys a picture of my drains and how they were stitched into my skin but my friend was looking out for all of us when she reminded me it was a bit much. The surgeon said my facial muscles were melting away like butter, despite me manually exercising them every day for a year. This hit me like a ton of bricks to say the least. I really thought my face was coming back on it's own. A recovery time that was hopefully 3-4 months became 6-12. The goal is a smile. It’s been 4 months and when I bite down really hard, I can move my cheek. At rest, I have symmetry and my face no longer droops so drastically on one side.
I truthfully don’t know which horrific picture to show for this. My scars, my drains, my stitches, the swelling (picture: Fat Bastard from Austin Powers). So, I will just show a before surgery and after surgery side by side and keep it PG.
The pic on the left is one of the ONLY pictures I took in over a year. I took it to send to my sisters and show them how much better my face was getting. It wasn’t. Right is recent and after facial and eye surgery.
Then, a few weeks ago, I had a weight put inside my eyelid so I can close my eye. I had undergone over 21 hours of anesthesia in the past year, but this one I had the pleasure of being awake for. Is it against some moral code to say I might actually like anesthesia? I’d rather sleep than smell the burning of my own flesh. Again, I will spare you guys the pictures. I am not 100% sure on the line between transparent and scary, but I know it is a fine one.
I am so done with surgeries.
I was healthy my entire life until I wasn’t.
Not only have I faced death, but I have mourned the loss of who I used to be. I try hard to be her still, my eyes are filling with tears as I admit to my computer screen that I just might not be her anymore. Everything feels dramatic to say, unbelievable that it actually happened, but it is all real. For a while, I felt like I was stuck in a horrible nightmare. Then I realized there is no waking up from this. I am constantly reminding myself that others have it worse. I have the strength, so I fight. I mainly fight myself.. everyday. Why won’t my brain just do what I want? My thoughts are there, but there is still such a disconnect. I hear myself, but my brain does not respond the way I want it to. Furthermore, I am constantly trying to validate my own feelings, what I am allowed to feel and what do I just push aside?
I am okay with this changing me. Being braver, stronger, smarter, kinder, more patient. I’m navigating new roads with no map, but I got this.
People always wish for a fresh start, but a fresh start doesn’t come without an ugly ending.
A friend of mine who went through a lot told me that being torn down was almost a good thing, because she got the chance to build herself back up how she wanted. That really resonated with me. Instead of viewing myself as a ruined painting, I see myself as a blank canvas, I am recreating.
It is so hard to know what to hold on to, and what to let go of. Especially when it’s pieces of yourself.
Sometimes I think of what I’ve gone through and it just doesn’t even seem real. But then I’ll stand up and fall into a wall, or get a glimpse of myself in the mirror and I’m like “yeah, no, that definitely happened.” Still is happening.
It’s weird and uncomfortable to talk or think about, but way more weird and uncomfortable to go through.
I feel you, David.
Nobody referred me to any of my recent surgeons, nobody has given me any answer other than “time”. I didn’t like those answers, so I found my own. I am so thankful for every doctor I have met along the way, but I am also thankful that I have learned how to advocate for my own health. I know who to ask what questions to, and that is incredibly important to anyone facing their own health struggles.
It’s so important to not accept what is keeping you from the potential you know is there. I have seen countless specialists, surgeons, oncologists, therapists, nurses, neurologists, etc, and they might be an expert in their field, but that’s just it. Their field. For a while I felt like they saved my life, and sent me home. For so long, everyone’s initial thought was that they were so thankful that the tumors were benign and a successful GTR was performed. It felt almost ungrateful to ask about regaining the quality of the life saved. Life without really living was supposed to be “good enough”, right? Then I realized, you can’t expect the neurosurgeon to know the things the facial surgeon dedicated their entire career to studying. These surgeons are all incredibly talented and intelligent, but just because you have found the right doctor does not necessarily mean you are in the right place. Moral of the story: if the doctor you are dealing with doesn’t have answers, find a doctor who does.
I didn’t believe it when they said I’d probably never walk again, so I don’t believe it when they say I’ll probably never smile again.
The surgeries and physical/mental recoveries are not all that have happened since my last blog. I am very hard on myself, and sometimes that confuses people with me not seeing the stars. I see them, they are just far away. After surgery, I woke up and thought “I can’t believe I almost just died and never got a sleeve, went skydiving, got married or went on a Eurotrip. Since my last blog, I’ve done 2 of the 4. Would’ve been 3 this year but Covid wanted to rain on our wedding plans. Additionally, we bought a house, our little man finished Pre K, we got a puppy, etc. Lots to be thankful for, but that is not why you are here.
Oh, and not to brag or anything, but I can do jumping jacks now. I was scared, but then that “I-survived-brain-surgery-so-I-can-do-anything-complex” kicked in, and I was like, fuck it! Threw my arms above my head and jumped into second position. Then, I did it again. I did it 8 more times before I almost fainted at how talented and athletic I am. I also almost fainted because my heart rate doesn’t rise above “couch lard” too often these days.
Yesterday. Sitting incredibly awkward and should probably brush my hair, but I just had brain surgery. I can still use that, right?
Here I am. 1 and a half years after brain surgery for two tumors (brainstem/4th ventricle if you’re wondering). This is me. Believe it or not, you’re looking at the paralyzed side of my face. I have come so far and I’m not done. * Cue Loren 2.0 *