This is Spinal...Damage?

Sometimes, I wish I weren’t right all the time. At least, I wish I weren’t right all the time about my own body. Wait, no; Judy Blume taught me to trust my own instincts about my (female) self. Yay periods! No, that’s still not right.

Okay, mostly I wish I weren’t right about predicting when something ridiculous is wrong with me, and I that I may need more surgery. Or, that I’m randomly about to become the weirdest case of “sick” or “falling apart” in the history of some doctor’s caseload.

When Collin was a baby, I had to have my tonsils out in an emergency surgery, for example, after having an abscess on them drained in the emergency room, because it had become so swollen it was compromising my airway. By the morning, it had re-filled with so much fluid, that I had to be wheeled back to surgery within an hour of my follow-up check because my entire airway was blocked. When it comes to finding ways to be messed up, I don’t screw around; I go hard.

Since I started this ever-so-epic journey of Chiari, another thing I was right about:

*Insert Digression*

Dear Doctor-First-Neurologist-Who-Told-Me-I-Was-Fine,

 I wasn’t.

Sincerely,

Patient Who Told You So

 *End Digression*

Anyway, since I got sick, even before I knew it, I have also been complaining about very specific neck pain. I can point at two spots, one worse than the other, right down to the centimeter, that bother me. And, as it turns out, I have been right all along about those things too.

This is how these complaints have traditionally been received….

“Rachel, Chiari comes with neck pain. It’ll feel better once you are decompressed,” say both surgeons for both of my surgeries.

Cue Rachel feeling trusting of her surgeons and fully believing that it’s true.

But my neck pain didn’t, and hasn’t, improved. And, post-operatively:

“Rachel, you’ve had Chiari surgery. Your neck muscles were opened like a curtain. Twice. You’ll have some post-operative pain for a while. Give it some time. Plus, your neck will always be a bit weak,” say both surgeons for both of my surgeries.

Cue Rachel feeling trusting of her surgeons, but at the one-year point of surgery #2, a little suspicious. Mostly because she can’t even wash her hair without crying.

So, I talked to my pain management doctor. He’s the very bestest doctor in the whole world, so I really trust him, and I know that he listens to me. Hell, even if he’s not, he’s the best faker in the world. He’s really good at making me feel like he’s listening. I imagine that in his outside life, he’s used up all his listening skills on his exhausting patients, like the ones I can hear through the walls while I wait, begging for Oxycodone because they have indescribable pain in a different spot than last time, and his wife wants to murder him because he can’t remember to bring home the damn bagels that she just called him about on the ride home.

Anyway, I’m not on any pain medication right now, so my pain is, not currently what you’d callmanaged.” It’s out there in the open, screaming to be heard. It’s basically having its own little pain pride parade every day. But, he’s still trying like hell to help. He’s concerned. I’m concerned. Bryon’s concerned. I think the mailman, who is forced to witness my walk of (non)-shame to the box in my pajamas every day, is also concerned.

Don’t get me wrong, I didn’t expect no pain for the rest of my life (not that I didn’t hope for that scenario – don’t all Chiari patients long to be a success story that does something amazing like running a marathon again, or being in a Wheaties commercial?); but, I did hope to be able to sit upright for larger portions of the day.

I explained for the billionth time, to him, the few spots on my neck that were agonizing, and stressed that I’ve said this at every appointment to every doctor. And, I told him that there are other things that are freaking me the fuck out, now too. My arms are going to sleep, sometimes for up to 18-24 hours at a time. I get dizzy when I look up, sometimes to the point of falling over. I can’t see if I look to the left or right too long. My legs are week, especially my left one. My left hip hurts so much sometimes that my Tiny Tim impression is far too true-to-life.

He’s known that my neck has hurt all along, and he’s done plenty to try to ameliorate it, from physical therapy, to suggesting a medical pain implant device, as a last resort. But he did a full exam and was pretty shocked at the extent of the new weakness. So, he sent me for a battery of tests and images that made me feel like someone was finally taking it a little more seriously than, “this comes with Chiari.”

The most “fun” test was the EMG, because everyone loves to be stabbed with tiny needles to see how their nerves are functioning. Spoiler alert: my nerves seem to be functioning okay. But, this is good news, because we were temporarily terrified of a potential MS diagnosis. Phew.

My surgeon likes to say:

“your spine looks great! I wish I had this spine!”

This assessment has perpetually annoyed the fuck out of me. No matter what specific question I had for him, his answer was always that my spine was great. Great. Fantastic. Great. No issues. Great.

Hmm…

That seems so weird for someone who has had neck issues since day one. It was, in fact, the first thing that sent me to the doctor, aside from the headache. My neck pain spread so far down my shoulder and neck that my whole arm became useless. I couldn’t lift my work bag. Thanks to fantastic military medicine, I was prescribed Motrin, and I was miraculously healed.

My surgeon is a fantastic surgeon, but he has a reputation for not really “cooking stats,” but for keeping his stats the way he wants them. This means that if you go see him for Problem A, he won’t “let” problem B pop up on your case, because he doesn’t want to mess up his high success rate on his surgical stats. So, no matter what you come up with on your imaging, he’ll tell you that you look great.

I’m a Chiari patient. He fixed my Chiari problem. I’m not a spinal patient. Not even if that Chiari caused the spinal damage (which it obviously did). Chiari fixed. Job done.

This can be a problem in sick-person world, because finding a spinal surgeon to take on someone else’s work is, well, challenging. Duh, they don’t want their hands dirty with someone else’s trash stats either! Meanwhile, patients suffer.

And, in case you hadn’t guessed, you don’t want the Jiffy Lube of spinal surgeons messing around in there, especially at the C-spine level. Your C-Spine is the level between your neck and shoulders. A tiny slip and you are paralyzed from there below, including breathing. Hooray! Jiffy Lube surgeon means the potential for diapers and a ventilator forever! At least I won’t be able to say my neck hurts, right? Not funny? No sad clown?

So, drumroll….

I get all of my imaging results back and what do you know? My C-Spine is rather fucked up. In fact, I’d like to take a moment to congratulate C3 and C4 right now for being the only two vertebrae, currently, holding down the fort. Great job, guys. A round of applause.

C-1, which is the vertebrae that my first surgeon shaved to make room for my brain, whelp, that one is deteriorating pretty badly. C5-7 are also degenerating, and the discs at most of these joints are bulging, especially badly at C7.

The insane part is that these are the exact spots that I point to, every time for the doctor. Every. Fucking. God. Damn. Time. And, I always say, “This spot is the worst,” at C1. Always. At C1, I always demonstrate how if I hold my head a little differently, I can relieve some of the pressure, but it doesn’t help for long. Hmmm, wonder why that is! Because that’s where my amazing (I’ve decided to compliment it from now on, in hopes that it will be nicer to me) brain used to be sitting!

Grrrrr.

Did you know, that Chiari is a progressive condition? That the longer your brain, which is fucking heavy, sits outside your skull, and rests on your SPINE, where it’s not supposed to sit, it does damage? It’s a damage domino. I was 37 when I was “fixed” the first time, which failed; 38 when I was fixed the second time. So, I was 38 when the weight of my brain finally got lifted off my spine. For 38 years the weight of my brain rested on my spine. No shit there’s a bunch of damage there.

So, what to do?

Well, that’s the million-dollar question. I have no idea. I’m scared right now. I have a bunch of information that I have no way to fully figure out, at the moment. I’m relatively certain my current surgeon will say what he always says, but who knows? With a report in hand that says my spine isn’t great, he may not be able to say that. Of course, doctors like him like to say things like, “this kind of thing is normal,” especially for women my age. Since this damage is progressive from reports before, I know it’s most certainly not normal, my man.

Um no.

Most women my age can function without a C-Collar. Just sayin’, doc. Not going to get away with that one. But, I don’t want to rush into spinal surgery, either. Fusion is the most common spinal surgery, but at the C-level it’s a big damn deal.

And, it’s relatively rare at C-1. There are significant risks of fusion at C-1, because C-1 holds your head ON your neck, and makes it turn. It means that there’s an almost guaranteed reduction in mobility and range of motion, usually up to, or at least, 50%. Hooray! Because of this, it’s usually only done when required; for example, when your neck is broken, or you are literally decapitated internally. It’s also done when, wait for it, your neck bone (yeah, like mine) deteriorates. Booyah!

Ding! Ding! Ding! What does she win!? The high probability that she’ll soon be filled with neck hardware, new scars, another shaved head, and the increased frequency of surprising her from both behind and all sides. 

There’s a pain implant device, but is that just a Band-Aid until my neck gets so bad that I can’t move at all? Then what? What if there’s nothing left to fuse at that point? Do I go back on pain meds and hope for the best? Oy!

Oh, and by the way, my hip hurt because I had broken it, and never realized it. Yeah. For real. I broke my damn hip! Who the hell does that! Apparently me.

Okay, I’m being dramatic.

But, it’s mostly true. Apparently, I broke a big ol’ chip of bone off my hip and there it is on the X-ray, having had its maiden voyage, and then rejoined its pals on the old SS. Hip Bone! I wonder where that chip was trying to get to?

Now, I don’t feel like such a damn baby for whining about it. The report says that I may have also a labral tear, but meh. I think the broken hip sounds more impressive. I think I’ll adopt a permanent limp from now on.

Bryon says he thinks I have osteoporosis because since he’s known me I’ve broken too many bones, and my spine is falling apart way too quickly for anyone’s taste. And, he’s all braggy about having never broken any bones. I think that instead of worrying about me having osteoporosis, he should worry about which of his bones I’m planning to break for making fun of my pitiful weakness. Except I’d probably break something trying to do that, so that’s a terrible idea! And who gets to almost forty without breaking a single bone? Didn’t he play as a child? Come on! I was a dork, and even I broke two bones as a kid! Lame ones, but still.

We have about a jillion doctors’ appointments coming up to talk over options and what to do in the next few weeks, and I’m hoping for more answers, but I know this process. It’ll leave us with more questions and more answers than before. I know we won’t know anything more. I know that it will be months before I know what’s happening. I have names and numbers of more surgeons for second and third opinions, if my surgeon decides to be a butthead; but they are all, of course, out of network. Ugh. But, it’s the beginning of the process.

So, away we go again! Wish us luck.

I leave you with the image of this insanity, if only because of how happy my boy and I look. Bryon noticed that every time he tickled Collin, I laughed too. Collin’s laugh always gets me. Every. Single. Time.

 

I may not be able to sit up for more than a few minutes at a time, or get dressed very often, or comb my hair, or put on my makeup, but I can let my boy lay next to me and listen to him laugh.

So, ignore the up-the-nose-shot, and how ugly I look, and enjoy mommy-son joy.

Bad Hair Day

Yesterday was a tough day for me. I cried about my hair. I didn’t have a bad hair day, or anything like that. I just re-discovered that I’m bald. And, it’s not even like I’m that bald anymore. I have about two inches of growth, which is just enough to get tangled up in a hair tie, and yank itself back out when you try to wrap it a second time. It’s a glorious length. I’m really excited for all these girls who are under-shaving right now for “volume,” to realize what a stupid mistake they’ve made, in a few months, when they try to re-grow it.

Super cute pattern, which lots of these "looks" showcase, but ugh later. Granted, mine is a strip up the middle, and not a flat across, which is not as awesome.

Super cute pattern, which lots of these "looks" showcase, but ugh later. Granted, mine is a strip up the middle, and not a flat across, which is not as awesome.

 

Anyway, I’d put my hair in two braids, when I got out of the shower. This isn’t an unusual thing for me to do, but I guess I never looked at the back before. As I was putting my makeup on, getting ready to go pick up Collin, and then to a doctor’s appointment, I caught a glimpse of the back in the combination of mirrors that the wall mirror and medicine chests give me. It was then, that I realized what an atrocity the shaved portion regrowth looked like.

I spent the next fifteen minutes trying to finagle it with pretty pins, and with headbands. Then, I cried. No matter what I did, it looked terrible. I finally left it the way it was, but that was worse. It suddenly occurred to me that no matter what I did “in the front,” with my makeup, with my clothes, with my shoes, I had this disaster going on in the back that said, “Chiari,” or “brain surgery.”

It became this metaphor for my life: Chiari will always be chasing me. A headache ball is always waiting to drop. Chiari, and pain will always be in the wings, waiting to destroy whatever window dressing, whatever hopes I put on myself. It’ll always be behind me, chasing me. So, I cried some more.

Then, I stopped crying, finished my makeup, and got in the car. As I backed out of the garage, I looked in my rear view mirror and had to do a double-take, I was orange. Orange. That’s right. Orange. Not just a little orange either. I was gross. Apparently, the lighting in my bathroom, with the blown bulb encouraged me to go a little heavy-handed with the peach in my bronzer palette. But, thanks to my setting spray, I couldn’t wipe or blend any of it out. So, now I had bad hair, and I was orange. Talk about feeling self-conscious.

When I picked up Collin, thinking that maybe I was making too much out of it, I asked him:

Mommy: Do you think I look orange?
Collin: No, not really. But you look a little like Donald Trump.
Mommy: Thanks, I feel all better now.

So, I did the least I could do: I pulled my braids out, in the car, and smashed my hair around into knots and blushed profusely until my face was merely a red, splotchy mess. I looked especially pretty, if I do say so myself.

Collin and I had a great-ish afternoon, except his public meltdown at a store, in which he threatened to run out into traffic if I didn’t buy him something, anything, in a vintage store. He didn't run out into traffic, but he did run outside. This was after he ran through the place, touching everything he could, and demanding that I purchase everything there, including beaded purses and hats with veils. No, this isn’t bad parenting, this is a child with a one-track mind that cannot be stopped.

Then, the meltdown in the evening resulted in him dipping a glass in the toilet, and dumping it on me, repeatedly, and charging at me with a closed fist. I was really excited about that one, especially since it was after he tried to pull a towel out from underneath me (since, I had to dry the toilet-water floor), in hopes I’d fall. Not to worry, he'd forgiven me for the cause of the meltdown (me throwing away his special piece of soap), only moments later, when in his rage, he blew his nose too hard, and it caused a bloody nose, which led to a panic attack. He, literally, cannot stand the sight of a bloody nose, and goes into actual panic when it happens, so he needs his mommy to hold him. He'll punch me one second, but then crawl into my lap in terror the next. Nothing to see here folks, totally normal, right?

Oh, and it shouldn't take any kind of emotional toll on me, or on Bryon. We should be able to just flip right along with him. We should be able to continue to speak at whispers when he's screaming, which we do. We should never touch him when he's raging, which we don't, except to protect ourselves or him. We should never tell him that he's bad, just his actions. It's exhausting. And, when he destroys our house, our things, and hurts us, then needs us, we are supposed to hold him like he's still our precious, special baby, even though less than five minutes prior, he tried to punch us. The thing is, he is our baby; he can't help what's happening, but it's so hard, so very hard to remember that.

Overall, it was a pretty terrible day. I felt hideous and my son tried to assault me, yet again. Knock him into next week, right? That ought to teach him, I’m sure. Instead, we’re working again, and more, with some added doctors on amending his initial diagnosis. There’s a high probability that there are other mental health issues that are not being properly diagnosed or treated, and that we need to explore. We are working pretty hard to get him the therapies that he desperately needs.

So, today I’m recovering by doing nothing. I’ve earned it. I miss the dog and I miss the feeling of forgetting about my bald spot. I also miss not being orange. So, I’m enjoying a clean face and a non-baldy head.

Birthday Eve Staples

It’s my birthday, today! I LOVE my birthday. It’s the one day of the year that’s mine. It’s all mine. I don’t have to share this day with anyone else. I’m greedy that way. I am sure that other people have this birthday. In fact, I know they do. One of my college professors, who is a pretty great guy, has this birthday. But still, it’s my birthday.

I didn’t grow up in an especially easy house to live in. We had clean clothes, meals on the table, and enough money to send two girls to college. Lots of people would say that’s all a person needs. And, maybe it is. I got an education, and then, I got the fuck out of there.

I got the fuck out of there, did a few things, then made this person. Bryon claims that he helped, but most of the time, I take all of the credit. I recall doing most of the hard "labor."

I got the fuck out of there, did a few things, then made this person. Bryon claims that he helped, but most of the time, I take all of the credit. I recall doing most of the hard "labor."

But, if the laundry wasn’t put away, the mail was crookedly placed on the counter, or someone’s shoes were left by the front door, heaven help the kid who was closest to my mom when she discovered the error. Even if those things were done correctly, she’d find something to yell, smack, or otherwise punish about.

She’s older now, so her memories have faded into a more idyllic version of herself. She’s got grandchildren, so she’s mellowed into a foreign version of herself that I don’t recognize. She’s like the witch in Hansel and Gretel. She softly, and sickeningly lures children in with sweets and kindness; but, I keep waiting for her to cook them.

Yesterday, when I got my staples out, I was terrified; especially because it was my birthday eve. That’s a real thing! If Christmas and and Summer’s Eve get an “eve,” so do I. I didn’t want my birthday to be tarnished by pain, anymore; so, I was especially freaked by the staple appointment being scheduled for yesterday.

See, on my 18th birthday, my mom peeled out of our driveway, screaming, “you’ve ruined my life!” I’m pretty sure she got confused, because it’s the angst-y teenager that’s supposed to have the tantrum, not the middle-aged woman, right?

My happy family, and my happy family pictures erase all the bullshit of my past. :) Besides, look! Collin found a feather! And, it's absolutely an eagle feather. It's totally NOT from a pigeon or a seagull.

My happy family, and my happy family pictures erase all the bullshit of my past. :) Besides, look! Collin found a feather! And, it's absolutely an eagle feather. It's totally NOT from a pigeon or a seagull.

She had gotten angry with me me for opening the sliding glass door one too many times to model my new birthday outfits. She wasn’t paying to air condition the outside! I’m saving my “you’ve ruined my life” moment to use on Collin, for something similarly egregious, like a glass of spilled milk.

Prior to that, my birthday was always the best day of the year, for me. My dad used to set up treasure hunts to secret, special presents. There was never any yelling. There was never any hitting. It was always a good, special day. It meant a day of peace from the usual chaos that was our house. So, I vowed that, from then on, my birthday would always be a good day.

So, I didn’t want to do the staples yesterday. I had stitches last time, which barely hurt to remove. These staples were already more uncomfortable just being in, than the stitches were. I wasn’t looking forward to them coming out. I was being a baby about it. I wasn’t saying anything about it, but I didn’t like the idea.

Cute, right?

Cute, right?

No more than thirty minutes before the appointment though, I was playing in the sand, frolicking at the beach, with my husband and my son. My son was so excited to get to the water, he tripped and fell. He flew through the air, arms flailing over his head. He fell in the dance of limbs that only kids can do, a glorious display of excitement, then tragedy, as joy mixes with klutzy glory.

In the melee of arms and legs, he skinned his elbow. I kissed his sandy, dirty, bloody boo-boo. Thankfully, he didn’t fall on the needle, condoms, or homeless people, also scattered throughout the sand. Miraculously, my love, just my love, fixed what, to him, was a serious injury. I’d held him close to me, and he felt better. We both did.  My life couldn’t be more ideal, more perfect. Right then, something important occurred to me: I have nothing to fear, ever.

I love this picture of Collin because it's so...Collin. Bryon says, "thanks, it looks like I'm picking my nose." He's not. But, even if he were, we've all done it.

I love this picture of Collin because it's so...Collin. Bryon says, "thanks, it looks like I'm picking my nose." He's not. But, even if he were, we've all done it.

The staples came out easily. I won’t lie, each one pinched, and hurt. It’s especially important to remember that pinch for something like 30-ish staples. Oh, and that the doctor “saved” the worst one for last. But, I was a brave little chicken. One of the worst parts was that we had to leave for the appointment at 6 am, because it's in Santa Monica. Sooo early! Bryon joked with the doctor that he could’ve done it at home with needle-nosed pliers. The doctor was not all that not amused. I guess they don’t like it when you reduce medical school to something you can pick up at Home Depot. Who knew?

Staples coming out! If you look carefully, in the background, on the table, you will see an iPad, not being played with! Collin is allowed to play with his iPad only on the weekends, and at medical stuff. For him to put it down, and be interested in what the doctor was doing, holy crap. The surgeon asked if he wanted to be a doctor, and Collin said, "No, I want to be an FBI agent, an archeologist, a rock collector, and some other things too."

Staples coming out! If you look carefully, in the background, on the table, you will see an iPad, not being played with! Collin is allowed to play with his iPad only on the weekends, and at medical stuff. For him to put it down, and be interested in what the doctor was doing, holy crap. The surgeon asked if he wanted to be a doctor, and Collin said, "No, I want to be an FBI agent, an archeologist, a rock collector, and some other things too."

No amount of anything, at any appointment, could ruin my birthday. Not anymore.  If I’d made a single whimper, I’d have two hands, fighting to find a place in mine: a soft little one (probably full of rocks and shells), and a big, strong one. I never have to be afraid (or sad) again, of anything. What more could I ask for, for my birthday, than the family that everyone should have? This birthday girl is happy, for the rest of her life.

My perfect family. That boy looks like me, I think!

My perfect family. That boy looks like me, I think!

P.S. Can't wait to see how my BIRTHDAY goes!

 

Surgery 1 vs Surgery 2 - And Tales of Being High

A little Chiari education for the masses. If you Google Chiari, it will tell you that it’s basically common, and no big deal. Meh, I’m here to tell you that anything involving brain surgery IS a big deal. And, anytime they touch the brain, it’s considered a traumatic brain injury (TBI), you know, that thing that’s a big damn deal? It takes at least a year to heal from any TBI. So, what’s brain surgery like, and how was one different from the other?

Top left: first day post-op for this surgery (coming off the massive dose of drugs, so sedated that I couldn't stay awake for my baby's visit, nor could I care that I looked like death); Bottom left: second day for this surgery, MUCH better, but still looking crappy; right, second day for first surgery. P.S. in that bottom left picture, check out that plaque! Collin won a science award at school. He's pretty freaking amazing, if you ask me.

Top left: first day post-op for this surgery (coming off the massive dose of drugs, so sedated that I couldn't stay awake for my baby's visit, nor could I care that I looked like death); Bottom left: second day for this surgery, MUCH better, but still looking crappy; right, second day for first surgery. P.S. in that bottom left picture, check out that plaque! Collin won a science award at school. He's pretty freaking amazing, if you ask me.

My first surgery, in general terms, was called a decompression. In greater detail, but still generally speaking, I had the following:

Craniotomy

My skull was cracked open to relieve the pressure that my brain’s inability fit inside was putting on itself.

Craniectomy

This is the technically term for the bit of my skull that’s taken out

Laminectomy


My first vertebrae (C1) was shaved down, like you might do with a cheese knife. This was to provide better access to both my skull and my spinal cord. Also, the nerves in that area were under a great deal of pressure from the hangy bits (cerebral tonsils) that had been pressing way too hard, for way too long, cutting off fluid, and causing nerve damage. This pressure is how Chiari patients get both nerve damage and become paralyzed.

Dura Graft with Host Material 

When skulls have big holes in them, they need to be patched up before the surgeon closes. Surgeons have three choices: synthetic mesh (the highest complication rate), bovine pericardium (cow heart), or a piece of the patient’s own dura (harvested from the patient’s body). The dura is the thin sac-like material that your brain sits in.

I always like the term “harvested,” because it suggests that your body, knowing it will need “extra,” sets up some kind of field, growing that material. In my imagination, there’s rows and rows of dura bits, and the surgeon just plucks out what he needs. In reality, the surgeon just slices out a small bit, from further up, and pulls it down to the spot he needs.


I woke up from my first surgery, in la-la land. I was relatively comfortable, on a pain-pump, and remember virtually nothing of the first 24-48 hours. I do not remember, in fact, why I was wrapped in a turban, by the time I reached my room. I was told, that I insisted upon it, in recovery, and that I refused to leave the room without it. Apparently, I was adamant that I needed it. A turban. As I often get cold when I wake up from anesthesia, I guess it seems reasonable to assume I wanted warmth; but the turban seems a bridge too far, even for me. Although, I am crazy.

Not a turban this time, but it's still a bit ridiculous. This is the recovery room, and I'm finally feeling "better" enough to be moved to my regular room. This is the "good" look. At this point, post-op, I have about a zillion and one drugs in me.

Not a turban this time, but it's still a bit ridiculous. This is the recovery room, and I'm finally feeling "better" enough to be moved to my regular room. This is the "good" look. At this point, post-op, I have about a zillion and one drugs in me.

This time, generally speaking, I had the opposite procedure(s):

Cranioplasty


Instead of a big hole being cracked into my skull, I had a hole patched up. There are fancy terms that describe it better, but the gist is that a hole is fixed with my own material, or synthetic material. Since I don’t grow titanium, to be harvested from a field, or otherwise, it’s safe to say that synthetic material was used. There are fancy terms for the muscles involved and the other things, but the important part is the cranioplasty.


This time, I remember every second of the recovery room. Well, I take that back; I remember the pain. I am in and out on the remembering bit. I remember medical personal shuffling around, in a panic, shouting things like “Her heart rate! We have to get it under control!” and “It’s nearing 150!” I remember someone, actually shouting, “Ativan! Ativan! Hurry!” Apparently, 150 is too high. Who knew? Also, who knew that pain can do that to your heart rate?

I remember, literally, crying and sobbing for Bryon, and finally convincing them that he would help calm me, not hinder their efforts in caring for me. And, I was right; he did help. I don’t remember seeing him, so much as I remember feeling him there, and holding his hand. I remember that as soon as I felt his hand, I felt calmer. I was able to stop crying. Even though the pain level was the same, the terror associated with it abated.

What I don’t remember, is that, apparently, they had to give me enough pain killers to kill a small village, because my tolerance was still relatively high, even though I’d gone through withdrawal. I also don’t remember that I was incredibly high from those pain meds, which made me very entertaining to those around me.

Bryon, while very doting, as always, took the opportunity to write down my most amusing doped-out quips. He realized I was high, I guess, when I pointed at the divider curtain, and said, “Look at that, the stripe-y pattern is moving up and down, like it’s an elevator!”

Hi...I'm high. Also, it's a good thing. I've just had brain surgery.

Hi...I'm high. Also, it's a good thing. I've just had brain surgery.

While eating ice chips he was spooning to me:
I don’t know who makes this cereal, but it’s bland. But, I bet if you added milk to it, it would make good ice cream!

Awaking from a brief snooze:
I was just being chased by Teen Wolf! We had to brush our teeth!

Awaking from Another snooze…or Maybe Not...It's Impossible To Be Sure!?
Rachel: Was I just watching Yoga Hosers before I went to sleep?
Bryon: No
Rachel: Was Jason Lee in my room?
Bryon: No
Rachel: Was Kevin Smith?
Bryon: No
Rachel: Phew. Good thing I asked before I told people that, because I was pretty sure it was true.
Terrible picture of me...Sorry Jason Mewes, apparently, I didn't care if you had been in the room. I was only concerned about Kevin Smith and Jason Lee. Frankly, you were always my favorite, but in my dopey state, I didn't remember that.

Terrible picture of me...Sorry Jason Mewes, apparently, I didn't care if you had been in the room. I was only concerned about Kevin Smith and Jason Lee. Frankly, you were always my favorite, but in my dopey state, I didn't remember that.

I remember none of this. I remember pain. I remember suffering. But, I also remember holding my husband’s hand, of course, his faithful and true hand. At least this time, like the turban, I was an amusement to those around me.

I snapped this picture after my first surgery. This is my husband, sound asleep on the chair-bed, next to my hospital bed. He set his phone alarm to go off, every ten minutes, so I could push my pain-pump meds and never get behind on my meds. To say he didn't get much sleep is an understatement. So, I'm glad he got some amusement from my pain meds this time.

I snapped this picture after my first surgery. This is my husband, sound asleep on the chair-bed, next to my hospital bed. He set his phone alarm to go off, every ten minutes, so I could push my pain-pump meds and never get behind on my meds. To say he didn't get much sleep is an understatement. So, I'm glad he got some amusement from my pain meds this time.

Inconveniences of a Hospital Stay

There’s so much to say about surgery #2 and my hospital stay. So much! So, I’m not going to pack it into one blog post. That’s no fun! I’ll be writing a few over the next few days/weeks. I mean, I was there for FIVE days! That’s a lot of hospital fun, right?

The Bathroom

I was in private room, with my own bathroom. They showed us how to unhook my monitors and IV, so I could use the restroom, anytime I needed to. This seems great. However, I was on so many painkillers that both posed a problem. Opiates mess with muscle control for urination, for some people, so no matter how badly you have to go, sometimes, it takes forever to remember how to get everything to work, once you are sitting there. And, the other thing? Not happening. No matter how many stool softeners they gave me. They might as well have been trying to soften an actual stool.

Couple these problems with the stage fright of sitting in the bathroom, knowing that at any second, a nurse/physical therapist/orderly/doctor/delivery person/rabbi/superhero/vitals check/homeless person/fry cook/wandering minstrel was going to come in. It seems like, every twenty seconds someone does, in the hospital. So, bathroom things just don’t “happen,” the way they should, while you are there.

My toilet was also about six inches too tall for me. It was obviously handicap accessible; I’m not. So, my short-person feet dangled well above the ground, which made “going,” surprisingly difficult. I was shocked at how big of a role physics actually plays in “going,” and I remembered this ridiculous ad that I saw a while ago.

So, I improvised and put a basin on the ground, upside down, for my feet. Voila, a poor man’s (or woman’s) squatty potty! I’m a genius. It actually helped. And yes, I have now ordered a squatty potty. I’m sold on its effectiveness. Since I’ve been home from the hospital, I’ve been putting random objects in front of the toilet to “assist,” because of the challenges in “going,” presented by massive amounts of post-op painkillers.

Laugh if you must, but I challenge you to huge doses of morphine coupled with Percocet, muscle relaxers, and nerve meds. Throw a stool on the floor in front of your toilet, and suddenly, it’s nirvana, instead of a cramp. Whatever works, right? I’m just really excited to see if, when it arrives, my poop will look like rainbow soft serve. Because right now, with my imitation squatty potties, it most certainly does NOT.

The Sponge Bath

I have a massive incision on the back of my head. This happens when surgeons insert a titanium plate in your skull. Because they leave a huge incision in your head, they prefer that you not get it wet. Persnickety surgeons, and their preference to avoid life-threatening infections. Of course, they can go overboard, I think. My surgeon, for example, made me wash, for five days, before surgery with this soap, to avoid surgical infection.

Daphne says "hi!" She also wants to know why I made her pose with the stinkiest soap on the planet. The pink is a lie. It looks like it might be perfumed to smell like berries or something pleasant. It isn't. It smells like horror.

Daphne says "hi!" She also wants to know why I made her pose with the stinkiest soap on the planet. The pink is a lie. It looks like it might be perfumed to smell like berries or something pleasant. It isn't. It smells like horror.

I felt like I was taking Sybil showers. The stuff smells terrible. There are no words. Also, I felt like he must think his patients are filth-balls. I couldn’t imagine what kind of squalor he thinks we must live in, especially in comparison to where he must live. What does he think my normal bathing habits are like? I know that it’s just standard practice, and he probably doesn’t imagine that any of his patients are filthy. But, it makes me imagine that there must have been someone rolling in the mud pit, outside their double-wide, with the litter of topless dancers they just had bred, before they came in for their cranioplasty. You know the idea: there’s always a reason for the sign, or the procedure; someone always did something crazy, otherwise there wouldn’t be the rule/practice/standard, in the first place.

Someone must've done it once, right? Just like maybe, someone, came into pre-op, totally filthy? Maybe?

Someone must've done it once, right? Just like maybe, someone, came into pre-op, totally filthy? Maybe?

His post-op instructions were a lot more lenient. I am allowed to shower with whatever I want, just so long as I didn’t get my incision wet. I am even allowed, once I leave the hospital, to wash my hair, without getting the incision wet. That meant, in the hospital: sponge baths. I know some people (men) get excited by the prospect of a sponge bath. Nurse plus woman, plus sudsy moisture, equals hooray! Let me disabuse you of that fantasy with the following terrifying tale.

Each room at UCLA is assigned a nurse and an orderly. The orderly does the vitals, the errand running and things like sponge baths. This clears up the nurse to do the patient care. It was a beautiful system, and one that, I’m sure, is not exclusive to UCLA. With two exceptions during my stay, my orderlies were awesome. My sponge bath orderly was a woman, otherwise, I’d not have accepted the offer to clean up. The problem: she was about 300 pounds. Her weight being an issue didn’t cross my mind as a challenge. It should’ve.

No one wants to get naked in front of a stranger, and allow them to suds them up. Or, maybe they do. I’m sure there’s a Craigslist group for it; I don’t know. Anyway, to agree to do it, for me, is a big deal. It means two things happened: I felt absolutely filthy, and the person offering was tolerably comforting, and seemed competent at her job. I generally don’t think it’s okay to pick on people for their weight; however, I also don’t think it’s okay to pretend that your weight is not a problem, if it interferes with your ability to do your job properly; or, if your doctor has told you that you either have to lose a hundred pounds, or your foot.

As I was being sponge bathed, my orderly became so sweaty that she soiled through her scrubs, and not just in typical sweat spots, the entire outfit. Her hair was so saturated with sweat, that her fluffy ponytail became a single, moist, noodley strand of hair that stuck to her neck. She kept wiping her forearm on her face, to wipe sweat off of her forehead, and out of her eyes. That she was wearing gloves, seemed pointless when there was so much sweat involved. She was so out of breath, I thought she might faint. It was a typical sponge bath on my end, one where I gave her chase down the hall, and made her retrieve me, after I’d climbed up the draperies. I’m not sure why she was so exhausted. Kidding. I sat in a chair and barely moved, except when she instructed me to lift my arms.

I wasn’t sure what to do. Do I stop her? Tell her that I felt clean enough now? I felt terrible that she was in such discomfort; but, I was pretty uncomfortable too. I was freezing, soaking wet, naked and half-filthy, half-clean. I was also, you know, two-days post-op from brain surgery. It was a terrible situation. I am, generally, a sweaty person when I exercise, so I felt badly for her. I really did. But, this was something else. Was she going to have to go into her next patient’s room like this? Could she change scrubs? This was humiliating for both of us. A sponge bath is always awkward, but this was something else altogether.

When she finally finished and left, Bryon and I just looked at each other and had nothing to say. He finally said, “well, that was terrible.” I think that said it all. I added, “So, I take it that was not what you had in mind for a sponge bath fantasy then?”

My next orderly was a 6’5” man. I was far too uncomfortable to ask Captain Handsome to suds me up (Bryon outranks him as Lt Col Handsome…aww). So, I had to wait another shift. The next one was the orderly that we called “the sidler.” I couldn’t wait for her shift to be over. You never heard her come in. She didn’t actually do anything when she did come in, but she did manage to make the whole room very uncomfortable. Again, I had to wait for the next shift.

When I felt comfortable again, it had been several shifts, and I felt filthy. This orderly gave us tons of supplies and said that Bryon could do it from now on. Hooray! Finally, someone I knew I felt okay seeing my bits and bobs. And, I think he’s pretty happy with that sponge bath scenario too. But, that brings us back to the hospital bathroom problem. Every time you go into the bathroom, and start the routine, you know you are going to get interrupted. Now, it wasn’t just trying to “go” in the bathroom to be worried about, it was being naked and scrubbed down, by my husband, no less. Oh God, the pressure!

I told you he was Lt Col Handsome :) This man's charm wins people over wherever goes. It's no surprise that the ladies at the hospital thought he was the most amazing husband on the planet; this is something I obviously already knew. He does everything short of taking my pain on for himself. These men exist, and we're busy training one up for one of your daughters. He'll be ready in about twenty years. He's learning from us; so, we expect your daughter to be brought up to be an appreciative and equal partner.

I told you he was Lt Col Handsome :) This man's charm wins people over wherever goes. It's no surprise that the ladies at the hospital thought he was the most amazing husband on the planet; this is something I obviously already knew. He does everything short of taking my pain on for himself. These men exist, and we're busy training one up for one of your daughters. He'll be ready in about twenty years. He's learning from us; so, we expect your daughter to be brought up to be an appreciative and equal partner.

My Crappy Haircut

My surgeon shaved a significantly larger portion of my hair this time, than my surgeon shaved of my head last time. Certainly, this is not my call to make; I’m not in charge of how much to shave. Nor, am I in a position to question why such a call was made. However, I am in a position to say that it makes me unhappy. I like having hair. It’s why I chose to have it.

Sick people don’t like complaining. We even get tired of hearing ourselves! Outside of complaining for a purpose, I try not to do it too much. For example, I complain thousands of times a day about how much my head or neck hurts, about the quality of my pain, the type of it, and the location; however, I do this to help log my pain for the specific purpose of medication management.

But, when I complain about something else, something specific like my hair being shaved, it’s probably because I’m pretty upset about it.  My doctor was pretty bummed when I complained to him about how much hair he’d shaved. See, we’d had a little heart-to-heart about how much he was planning to shave. I thought we were on the same page. I know I’m not supposed to care as much about my hair as I do about my brain and my recovery. But, I do. When I told him I was a little upset about my hair, he looked at me as if I was about to sue him for malpractice. Apparently, my hair comment trumped the superfluous thankfulness. Frankly, I think his surgeon’s ego is a little sensitive.

Gross! Blood! Guts! Spinal Fluid! Ick! But, worst of all, so much hair is gone! This is the day I woke up. I had to leave the bandage on for three days! It kept peeling up, because I had to ice it so often, and the edges kept getting wet. To counter-act this problem, the nurses would slap more tape right on top of the old bandage. When it was time to take the bandage off, this meant there were several layers of thick, new tape to peel off. The resident just yanked it right off, fully attached to the hair that  was  there. It was...unpleasant.

Gross! Blood! Guts! Spinal Fluid! Ick! But, worst of all, so much hair is gone! This is the day I woke up. I had to leave the bandage on for three days! It kept peeling up, because I had to ice it so often, and the edges kept getting wet. To counter-act this problem, the nurses would slap more tape right on top of the old bandage. When it was time to take the bandage off, this meant there were several layers of thick, new tape to peel off. The resident just yanked it right off, fully attached to the hair that was there. It was...unpleasant.

But, his reaction is not so annoying. What’s annoying is the common reaction of, “it’s just hair,” or “it’ll grow back.” Those stupid platitudes about what, I understand, is just hair. I know. I know. I KNOW. I realize that there are countless other things that I could be worried about right now, and I’m lucky to be freaking out about my hair. I could be hooked up to life support, with a ridiculous case of meningitis, or an infection. Or worse.

There’s this thing that people do when sick people complain: they offer platitudes to try to ease their own suffering, or discomfort at hearing a loved one (or even stranger) complain. The problem is, it doesn’t ease the sick person’s suffering. It eases the suffering of the person offering the platitude. Think about it: when you hear a sick person complain, you are uncomfortable because you don’t like knowing someone (you care about) feels icky. Furthermore, you know that you can’t really do anything to make it better, but, you want to do something. Knowing you can’t fix it makes you even more uncomfortable. To ease your discomfort, not theirs, you offer some empty platitude. This does nothing for the sick person, but superficially, you think “phew, I did something,” and you can think “at least I said something positive!” In your mind, you think that maybe this will make them think positively. Ugh.

Here’s the thing though: it’s my hair. I’m entitled to feel crummy about it. I’m entitled to feel like crap about walking around for a couple of years, looking different than I want to look, different than I’ve looked for over ten years. Imagine waking up tomorrow, different, in a way you have no control over. Now, imagine someone telling you to be grateful about it, because it will go back to “normal,” eventually.

There, all cleaned up and without a bandage. This is a pretty accurate depiction of what I'm dealing with, hair-wise.

There, all cleaned up and without a bandage. This is a pretty accurate depiction of what I'm dealing with, hair-wise.

Can we be realistic, for a second? How long do you think it takes for a shaved head to grow back to it’s previous length? I have really long hair, and now, for over a third of my head, I have no hair.

Apparently, I’m supposed to feel grateful for, and not care about my bald spot. I’m supposed to feel like it represents a successful surgery, right!? Plus, I’m supposed to be super happy, because the rest of my hair will “cover” the shaved area. Newsflash, it doesn’t entirely cover it, unless I wear my hair down, and stay completely still. This sounds completely reasonable, as I do tend to stay 100% still, 100% of the time. Furthermore, I am grateful for hair that is reduced in thickness by over a third. It looks luxurious and full. Wait, no, I’m not. Hold on, I’m sounding sad again.

Vanity aside, what’s bothering me the most is that, from the back, I’m identifiable to anyone on the street, as only one thing: a patient. If you saw a person with a shaved head, and a large scar going halfway up their head you would think one of five things:

  1.             What’s wrong with him/her
  2.             What happened to him/her
  3.             Did they have cancer
  4.             MAYBE are they contagious (if you are a germ freak!)
  5.             Oooh…isn’t s/he brave

The worst of this is that now, I’m ONE thing: I’m Chiari (if they ask). If they don’t ask, I’m just some medical “thing,” to strangers. Without this bald thing, I’m faceless and nameless to strangers, which allows me to be whoever I truly am. I’m so many things other than a patient.

An attempt at "prettying" up the bald. It's been braided so many times that the ends are frayed and disgusting. Nothing really hides that it's bald under there. And, i have to keep the incision mostly open, for now.

An attempt at "prettying" up the bald. It's been braided so many times that the ends are frayed and disgusting. Nothing really hides that it's bald under there. And, i have to keep the incision mostly open, for now.

Now, this hair thing has made me a prisoner of its causes and definition. It makes me want to wear a t-shirt with other things printed on the back. I want it to say that I’m also a writer, an artist, a mother, a student, a wife, a reader, a lover of animals, so many other things. I’d fill the shirt up with small print. I’m not just a bald head to be stared at.

It’s funny, sometimes I’m proud to show my status as Chiari Warrior, as “zipper head,”[1]; but other times, I want to be able to put my hair over my scar and be able to let it be a secret identity. By having so much hair shaved, I’ve been robbed of the ability to have that identity kept as secret as I want it to be, at least for a while.

The picture on the left is my incision from the surgery I had last year. the two on the left are my "new" incision. One is immediately after surgery, and one is about a week later. The staples come out in a week. While I've had significantly more hair shaved, it does appear cleaner.

The picture on the left is my incision from the surgery I had last year. the two on the left are my "new" incision. One is immediately after surgery, and one is about a week later. The staples come out in a week. While I've had significantly more hair shaved, it does appear cleaner.

So, tell me “it’ll grow back,” or “it’s just hair,” all you want. But, if you want to say that, I challenge you to shave all your hair tonight. Or, I challenge you to dye it all green. Do something drastic that you cannot change, that would force strangers to question who you are, or what you are, on the street. Then, be grateful about it. Be grateful that you aren’t dying, or that it’s not worse.

A failed attempt at "pretty-ing" up! Good Gawd! I can't wash my hair as much as I'd like, because of the incision, and because of the braiding, it's crazy frizzy. I look like Cousin It! 

A failed attempt at "pretty-ing" up! Good Gawd! I can't wash my hair as much as I'd like, because of the incision, and because of the braiding, it's crazy frizzy. I look like Cousin It! 

 

[1] In looking up whether or not to hyphenate “zipper head,” I learned that, apparently, that’s a super derogatory term for people of Asian descent, coined during the Korean war. Who knew? Chiarians have re-appropriated it to describe themselves, based on their scar, but now I don’t think I’ll use it anymore, especially since it’s based on the same description (zipper-like scars). We describe our own scars, and apparently GIs described running over Koreans with Jeeps leaving zipper-like marks on their heads! Yikes. It’s like claiming a racial slur and making it positive. Um. No.

Screw Mean Girls - I've Got Another Brain Surgery to Worry About!

I had no idea how important my last few posts would be. I take that back; I had no idea how important they would be to the few people that viewed them nearly 100 times. It’s strange how important you can be to someone, how much you can impact them in one context, but matter so little to them in another. It makes me imagine my “fans” opening my page again and again, making their poor husbands read it, or reading passages aloud, shouting, “can you believe she said THAT!” Poor hubby mumbles, “yes dear, she’s a monster.”

Meanwhile, the amount of angst I’ve spent on this whole thing has been about the equivalent to how bad I feel when I kill a centipede. I hate centipedes. Oddly, I'll rescue every other type of bug, and shoo it outside. I'm a softie for every living thing, except centipedes. Nothing should have that many legs! Nothing!

Don’t get me wrong, I shed my tears over a year ago. I was hurt by mean girls. I had my “why don’t they like me anymore?” moments; and I had my “what did I do?” and I had my “how can they abandon me like this?” times. But that was over long ago. I pretty much had my tear-fest long before my first surgery. It was the last time I saw any of these people, and realized I was “out.”

And here’s why I feel this way: I’m fucking sick! Yesterday, I was reminded of this in a big way. I got word that I am, indeed, facing a second brain surgery, probably before sinus surgery. So, all of this petty bullshit is just that. It’s petty, ridiculous bullshit, which was my point all along. Girls decide they hate you for whatever insane reason they make up in their minds, and they don’t offer their support when your family is literally in the depths of hell. But, they pretend they are smiling and waving. It’s insane. And, it’s a special kind of nonsense that I refuse to allow near my life anymore.

Full on pain, yesterday. I slept for over 18 hours of the 24 yesterday. How did I do this, with a husband out of town for work? People. Kind people. A neighbor played with my son. A different neighbor picked him up from school. Someone else came and helped me with my medication. Kindness. This is what sickness looks like; and it's what kindness looks like. I have been in a bad pain cycle for a few weeks and haven't been able to break out of it. The only thing that helps is pure, unbroken sleep. So, I slept. And slept. And slept some more. Like the pretty ice pack on my head?

Full on pain, yesterday. I slept for over 18 hours of the 24 yesterday. How did I do this, with a husband out of town for work? People. Kind people. A neighbor played with my son. A different neighbor picked him up from school. Someone else came and helped me with my medication. Kindness. This is what sickness looks like; and it's what kindness looks like. I have been in a bad pain cycle for a few weeks and haven't been able to break out of it. The only thing that helps is pure, unbroken sleep. So, I slept. And slept. And slept some more. Like the pretty ice pack on my head?

The news of my next brain surgery has put things in perspective, yet again. It’s why I have no patience for silly girl nonsense, and why it doesn’t matter. My battle isn’t with them, or with any mean girls. My battle is with my own body.

My body is constantly fighting against me. It’s constantly trying to tear me apart. It’s constantly trying to see if it can tear my family apart. My battle is trying to keep my family whole, amidst the storm that is both chronic illness, and brain injury; it’s a storm that wants, so badly, to tear us, and me, apart.

This illness wants, so badly, to force me to miss my son’s school performances. It wants me to lay on the couch, and not be able to play Lego. It wants me to be too weak to engage when he needs correcting, forcing Daddy to be the only disciplinarian and me to be his only source of comfort. It wants me to be too sick to ask my son how his day was, so he feels closer to the neighbor who drives him to school. And, it wants me to be too sick from pain meds to stay awake to hear the answer, when I’m strong enough to ask.

This illness wants me to be too sick to cook dinner more than once a month, leaving my supportive husband to add it to his list of amazing ways he cares for me, without complaint. It wants me to be too sick to shower alone, forcing my husband to not only be my lover and partner, but also my nursemaid, a role he didn’t sign up for. It begs to burden our marriage with far more sickness than health. It threatens our partnership, every day, and forces us to choose to be closer, or to be pushed apart.

So, when I get dealt another blow, knowing that a titanium plate in my head will come with more ICU time, with screws in my skull, and with more of everything awful, all this nonsense about mean girls just reminds me that it’s just that: nonsense. It melts like a snowflake from the first snow, landing on the highway: impotent and meaningless. If some nasty girls choose to be awful to me, and choose to pass the blame buck, choose not to self-reflect, that’s on them. It’s not about me anyway; it’s about them.

I have bigger and more important problems than a few mean girls who got upset about being called out on their behavior. And more importantly than that, I have bigger and more important people in my life than those who are small. I have people whose hearts are larger than life. Those are the people who I will lean on again. Those are the people I will talk about and share about. Those are the people I will see at the hospital, whose words of comfort will carry me on nights filled with pain and illness. Those are the people my son will lean on when he’s afraid his mother will die.

My reason to fight. This is the best I'd felt all day. I got out of bed when he came home from school. We sat together for a few minutes before dinner, and we cuddled on the couch. He told me about how excited he was to get further in his Wii game (a special treat to get to play during the week, but Mama is sick). And, we re-heated a meal that hubby prepped in advance for us. But, I have to keep my head, essentially, frozen, so I have to wear an ice pack, wrapped around my head 24-7, so I can even THINK of moving from bed. Why? Because my brain is swollen. Yes, swollen. I take steroids all the time too, to keep it from swelling too much. But, this is what matters, not some petty nonsense. If it makes silly girls feel better to hate someone whose life consists of this, then more power to them. I hope they enjoy hating me if it gives them a weird version of power.

My reason to fight. This is the best I'd felt all day. I got out of bed when he came home from school. We sat together for a few minutes before dinner, and we cuddled on the couch. He told me about how excited he was to get further in his Wii game (a special treat to get to play during the week, but Mama is sick). And, we re-heated a meal that hubby prepped in advance for us. But, I have to keep my head, essentially, frozen, so I have to wear an ice pack, wrapped around my head 24-7, so I can even THINK of moving from bed. Why? Because my brain is swollen. Yes, swollen. I take steroids all the time too, to keep it from swelling too much. But, this is what matters, not some petty nonsense. If it makes silly girls feel better to hate someone whose life consists of this, then more power to them. I hope they enjoy hating me if it gives them a weird version of power.

Yes, don’t forget that there’s a child here, a child who was (and is) afraid his mother wouldn’t (won't) come home from the hospital. Actually, his biggest fear was that they would cut out the part of my brain that remembered to love him. Imagine, for a second, your child saying these words to you. So, small people whose biggest concern is that they can’t recognize that they are rotten, I’ve got no time for that; I’ve got a baby who I have to comfort.  

Cruelty may hurt, but love and kindness carries. And, I argue, that kindness and kind people are far more prevalent. I see it every day; I only saw cruelty twice. That’s proof enough for me that kindness is the most powerful force in the world, and I continue to believe in it. Furthermore, I believe in it so strongly, that I don't doubt for a moment that, one day, mean girls will one day be kind girls. And when they are, I'll be right here.

This is so cute and so accurate, let's pretend that the person who created it didn't use the wrong "your." It should be "you're." There...I feel better :)