Thursday, April 20, 2017

Major Surgery Ahead......

I'm a planner. When I can't make a to-do list with neat little boxes to figure out how to tackle what's ahead because I don't know what's ahead...I get nervous. I don't like to write about uncertainties because what if they don't happen? What if they do?!

Anyway...that's not an excuse for my lack of blogging, but now that the next few months are (a little) clearer, I'm hoping that I'll be writing here more often.

There have been a lot of changes in my life lately, but for now I'll narrow my focus to the change that most directly relates to CP. :)

If you've been reading my blog for a while (thank you!), maybe you remember that my orthopedic surgeon mentioned the possibility of future surgeries when I had the pins removed from my leg last June. He told me that we could continue the conversation in February, and I could make a decision then.

Well...I've made a decision. I'm having a spinal cord surgery called selective dorsal rhizotomy (SDR) this July, in St. Louis, Missouri. If all goes well, the SDR will eliminate or significantly reduce the spasticity (muscle tightness) in my legs. I know there's a whole lot of controversy surrounding SDR, especially in adults. It's not a good option for everybody, but I really feel that this is the right choice for me at this point in my life, and my orthopedic surgeon here (and the neurosurgeon in St. Louis, of course) thinks it's a good move too. My spasticity is hard for me to deal with, and it's only getting harder as I get older. The surgeon in St. Louis and my surgeons here said they're actually surprised by how well I'm doing, given the amount of tightness and spasticity I've got.

But here's the thing: nobody tells you that CP gets harder as you get older. When I was younger, all my doctors said that I'd stay the same because my brain damage will never get worse. That last part is true, but our muscles, bones, and joints age faster than somebody without CP. With SDR, they're hoping (we're hoping) that I'll be able to slow that deterioration and maintain my independence for a longer period of time. :) My orthopedic surgeon here said that I need to do it now though, because every year I wait means a more difficult recovery.

I can't say that I'm excited about another surgery and another hospital stay, and I know that the recovery is going to be hard. Really, really hard. Months and months of intense rehab and relearning how to walk...

I'm definitely afraid. I think it'd be weird if I wasn't.

But I'm looking forward to experiencing what it's like to move without spasticity. I can't even imagine what it might be like to take a step without my legs fighting back.

And...let me just pause and embrace my inner-five-year-old for a second...I'M GOING ON AN AIRPLANE! The last time I was on a plane, I was six years old, clutching a letter that I'd written to the tooth fairy because I'd lost a tooth a couple hours before we boarded. My family's not big on traveling, so we don't usually go anywhere farther than a four-hour drive. The end result of this is that I'm 23 and I'm ridiculously excited about flying, already wondering if I will get a window seat. :)

I'm going on the trip with just my mom, so it will be an adventure for the two of us. We're both excited-nervous, and it comes up a lot in conversation. I can say that I'm already ten times more comfortable talking to my mom about CP than I was before all these surgery plans happened, so that's been a nice little side effect of this whole situation.

Anyway, I will keep you guys updated on how everything unfolds. If you've got any SDR-related questions (about my situation specifically or because you're maybe considering SDR for yourself or your child), feel free to send me an email at Same goes for if you just want to chat! I miss you guys.

Will post more soon! Thanks for sticking with me. :) It'd make my day if you could leave a comment to let me know that you've stopped by!

Thursday, January 26, 2017

When There Are No Words...

I've been wanting to post for a while, but I simply can't find the words. So much has happened in my life over the past month and I want to write about it, but I just don't know how. Most of the life changes are good -- or at least, there is good to be found in them -- and I will write more when I can, I promise. I love this blog and I love my readers and I'm not leaving anytime soon! ;)

Whenever I have trouble finding words, I go to my piano and I play. I don't usually share what I compose with other people, but this time, I thought maybe I'd share with you. <3


Monday, December 19, 2016

The Nightmare Before Christmas: ESCALATORS and My Terrifying Weekend Experience

Story time!!! This past weekend, my brother, my mom, and I went on our annual excursion to the mall to finish up our Christmas shopping ( my brother's start his Christmas shopping......).

I love everything about the mall at Christmastime...everything except for ESCALATORS.

If you don't have CP (or maybe even if you do?? Let me know if you're with me on this or not!), you might be saying, "But K...escalators are easier than stairs! You just put your feet on the first step and they carry you the rest of the way!"

To that, I say, "You're right. They do carry you. Unless they drag you."

Unfortunately, I'm speaking from experience.

For the record, I've always been a little wary of escalators. First of all, the railings MOVE. When I go up or down regular stairs, I usually like to grip the railing firmly first and get my bearings before I step. And every now and then, I notice that I have a little delay when I step (maybe a motor processing issue?), where it takes a few extra seconds for my other foot to follow. Normally, this isn't an issue, but on escalators, a few extra seconds can be the difference between being carried and being dragged.

When I was ten years old, one of my friends had a birthday party at the mall, so her mom took a group of us there, and I remember the quiet terror that overtook me when she led us to the escalators and didn't even look up. Ten-year-old me should have asked for a hand or maybe requested to take the elevator, but as you know if you've read previous posts on this blog, asking for disability-related help isn't exactly one of my strengths.

So I stepped on, closed my eyes, and prayed that I'd survive the experience without incident.

I did. That time.

But after my accident (in which I slipped on some water in eighth grade, broke my femur, and had to get surgery), I used crutches for several years and escalators were near impossible for me. I discovered this the hard way when I was out with my mom a couple years post-accident and we decided to give it a shot. I grabbed the railing with one hand and used my crutch in the other hand, and I couldn't get my left foot to follow quickly enough, so I fell. Falling with crutches is messy enough, but when you're on an ESCALATOR, it's a complete fiasco. I was being dragged up the escalator while my mom tried in vain to grab my arm and set me on my feet. It was beyond terrifying. Luckily, an employee witnessed my plight and ran over to press the emergency STOP button, but after that, I opted to use the elevators.

Now that I can put full weight on my left leg without pain (post-surgery to remove the pins) for the first time in eight/nine years, I wanted to try escalators again. And - hooray - I CAN DO THEM :) I did about five in a row without incident.

But let me walk you through what happened when I tried that sixth escalator. It was a couple hours into our shopping trip, and my brother just met up with my mom and me again so that we could grab something to eat (he had parted ways with us because he hates clothes shopping with a passion).

We approached a "down" escalator. My brother went first. My mom hesitated: "This escalator is kinda fast...I don't even know which stair to pick!" (It was unusually speedy). She gripped my arm and we picked a step.

I put my left foot first.

My right foot didn't follow.

My legs were tangled, going in two different directions as the escalator proceeded down, ready or not.

"HELP," was all I could manage to say.

My poor mom had no idea how to help me...*I* had no idea how to help me. All I knew was that I was at the top of an escalator that was dragging me down, pulling my legs in increasingly opposite directions as it descended.

And then: I fell.

My brother turned around, spread his arms, and caught me.

He managed, somehow, to right me again so that I caught my balance.

"Wow, that was a pretty epic trust fall," he said, once we had stepped off at the bottom.

I managed a shaky laugh -- "Thanks for saving me," I said. "I just about pulled a Buddy the Elf."

He laughed too. "I was thinking that too but I wasn't sure if it was TOO SOON."

I did a few more (slower) escalators successfully after that experience, but it was a reminder that sometimes the seemingly "ordinary" aspects of life can be tricky to navigate with CP. I have no idea what would have happened if my brother wasn't there in that moment, but I am beyond thankful that he was. And added bonus? My Christmas shopping is done!! :)

My escalator experience:
Think Buddy the Elf but far less graceful! ;)

Wednesday, December 7, 2016

Proving My Worth

Oops...I haven't blogged in over a month!! I was in the middle of drafting something a couple of weeks ago when I got a call from the girl I tutor asking for help, and then I forgot to come back and finish my thoughts.

But I love you guys, and I think of you often -- my community of people who accept me for who I am, many of whom KNOW what it's like to live with CP...and I wish that could be replicated all the time in the real world.

Sometimes it's a comment by a patient or a colleague -- "Your hips really drop when you walk" or "How can you help people do exercises when you are so inflexible yourself?" or "You need this physical therapy more than I do!" I smile and try to pretend that these words don't hurt, but the moment I arrive back home and can allow myself to feel again, I realize just how much their comments make me feel like I'm less than.

Functionally speaking, I can perform my job just as well as anybody, and it's not as though every moment is challenging. I have made so many friends at the clinic, and having CP has helped me connect with some of my patients...there's something so amazing about being able to say to somebody, "I know what you're going through. I've been there, too" -- to help them see that they aren't alone. I think most people can see that I am capable.

Sometimes it's just exhausting to feel as though I constantly have to prove myself to people, you know? And I know that this job isn't's just a stepping stone, but I wonder if I will always have to prove my worth in professional settings.

I'll write more later, but before I go, here's something that made me smile, and I thought maybe some of you guys could relate as well:

On the forms that we give patients, there's a "fall risk assessment," and it asks: "Have you fallen in the past year for any reason?" 

My initial (unvoiced!) reaction was: People can go an entire YEAR without falling?? I can hardly even go one WEEK! ;)

Until next time,

Tuesday, October 25, 2016


Four years. 

Four years ago today I was sitting on my bed in my freshman year dorm room when I hit "Publish" on my very first blog post. I then proceeded immediately to the "settings" of my blog and set everything to "Private" so that only I could read what I had written, which completely defeats the purpose of writing a blog.

I was scared. I wasn't sure how to share my story, or where to begin, or if anybody would even want to read what I had written.

But when I gathered the courage to set my blog to "public" again, people actually started reading what I was writing, and it seemed like it mattered to them. So I kept at it...I kept writing, kept sharing, kept connecting.

When I started this blog, there was a part of me that was afraid I was giving permission for my CP to overshadow the rest of my life. You see, cerebral palsy is something I rarely discuss outside of this space, outside of this community. I've never wanted to be known as "that girl with a disability" or "that girl who walks funny," and while CP is a beautiful, wonderful part of my identity, I want people to see me as so much more than that.

Looking back, I realize that my worries were unfounded. Blogging about my CP hasn't allowed it to take over my life, but my blog has given CP a space within my life. For the first time, I feel as though I have a safe place to acknowledge my cerebral palsy and all of the "extras" that come along with it (including, but not limited to, startle reflex, wrecked shoes, surgeries, and mini heart attacks whenever I spot a curb). I don't have to hide that part of me anymore. And having this space has given me the courage and confidence to be more open about my CP in the "outside" world, too -- even knowing that "the real world" might not be as supportive and understanding as my blog readers.

Above all, I want to thank you guys -- my readers -- whether you've been part of this journey for all four years or whether you've just found my blog, I want you to know that I appreciate you so, so much. My favorite part of blogging is that it has given me the opportunity to form connections beyond what I ever thought possible...friendships that are every bit as deep and complex and beautiful as the friendships I have forged in person. Many of you have reached out to tell me that this blog has helped you feel less alone, and hearing that fills me with warmth beyond words. Know that YOU have helped me, too -- just by listening, just by being here, whether we've written novel-length emails back and forth or whether you prefer to read without commenting.

Thank you...thank you for showing me that I am not alone in this, and for being here to encourage me through the hard days and rejoice with me through the wonderful days. This blog has become more than I ever imagined it would, and it has been an honor and a privilege to share my journey with you! Here's to another four years of blogging and connecting and togetherness in this crazy adventure of life. <3

If you'd like to reach out at anytime, please don't hesitate to do so:


Monday, October 17, 2016

When they ask you the question you aren't sure you're strong enough to answer

I started a job as a physical therapy aide with one of my former PTs (I was her patient from age nine to fifteen). It's a way for me to obtain the experience hours that I need in order to apply for graduate school in the field of healthcare, and it's a strictly part-time thing a couple times a week for now. I'm still testing the waters to see if it will work out...but day one is in the books and it went pretty well, so I am hopeful.

But there was ONE moment, and I should have seen it coming. I was talking with a patient, somebody I had met before outside of the clinic but hadn't gotten to know well.

The PT commented that I was familiar with a lot of the exercises that he was doing and I agreed.

"Yep, I've done that one, like, eighty billion times," I said.

"My hips are like the hips of a one-hundred-year-old," he said.
"Oh I think I've got you beat!" I laughed.
He laughed too. Then silence. Then...

"So.......what is...what is the problem that you had?" 

His voice was measured, cautious, politely curious.

It was then that I realized...I am not allowed to ask the patients direct questions about their medical conditions, but that protection is unidirectional.

They can ask me all they want. 

And here's the thing: 
I still can't say the words 'cerebral palsy.'

I took a deep breath, silently summoning all of the courage I could manage, trying to keep the panic from edging into my voice, trying trying trying to pretend that this question didn't make me want to crawl under the exam table.

"Oh, I...I have CP, so PT has been pretty much a lifelong thing for me," I said.

He smiled. "Ahh, ok!"

I think he was politely feigning understanding, because "CP" isn't exactly a well-known acronym, but somehow it's a million times easier than "cerebral palsy," and at this point in my life, those two letters are the best I can do.

During our lunch break, the PT pulled me aside.

"Somebody is coming after lunch, and he is probably going to ask you questions...personal questions. Please know that you don't have to answer anything he asks you."

"It's fine," I said, in spite of myself. "I can answer questions."

"No, I need to protect you," she said.

I see the way they stare at me. I see them wondering, and some of them will never dare to voice their questions, but some of them will. She can't protect me forever. She can't protect me from the world, can't protect me from cerebral palsy. I certainly don't feel obligated to answer anything invasive, but at the same time, I don't feel as though I should hide this part of myself, least of all in a physical therapy clinic, where my CP might help somebody feel just a little bit less alone.

Sometimes it's hard...sometimes it's crushing, lonely, seemingly unbearable. Sometimes it's painful...physically, emotionally, mentally, everything. But mostly...mostly it's just a part of who I am, a beautiful, irreplaceable part of what makes me ME.

Somehow, I need to find the strength within me to say those words out loudwithout shame, without panic, without hesitance.

I have cerebral palsy.

Edited to add: This is off-topic to the post above, but I collaborated with my friends Tonia and Tara to put together a CP Survival Guide: a non-sponsored post in which we recommended some of our favorite products to make living with CP a little bit easier. :) Check it out here!  

Tuesday, September 20, 2016

A Walk in the Park From the Depths of Hell
(AKA Whoever came up with this expression clearly didn't have CP)

"Let's go to the park," my friend says.

"We can bring my dog," she says.

"It will be fun!" SHE SAYS.

Sure," I agree, "That sounds awesome."

For context, the last time we went to the park, we spread out a picnic blanket under a tree and I fed a sugar cookie to her sweet little Maltese as it fell asleep in my lap.

As an additional disclaimer, I absolutely adore this friend of mine. We've been friends for about ten years now and she is one of the sweetest, kindest people I have ever encountered. So this post is in no way a criticism of her. In fact, I'd venture to say that this post is more of a criticism of ME - because I should have seen this coming, and I probably should have said something earlier on in the situation. Buuuuut I didn' here we are!

Right after my friend suggests the park idea, she texts her mom to ask if we could take the Maltese with us. A few seconds later, her phone buzzes.
"Oh," she says, "My mom said that Bailey hurt his paw, so it looks like we'll have to take my Standard Poodle instead!"

That was warning sign number one.

When we pull into her driveway to pick up her dog, we decide that I'll wait in the car, but about a minute later, my friend calls to me.

"Hey," she says, "actually you should come in! It might be a few minutes longer than we thought because my mom has to get the dog ready, and she wants me to change into my running shoes."

That's about when I realized I was getting in over my head.

In the kitchen, her mom is fastening the leash and collar onto the 60-lb Standard Poodle that is going to accompany us to the park.

"Aww, hi Lily!" I say, scratching her dog around the neck. Then I turn to her mom. "She seems so calm!" I say. (my dogs usually get ridiculously excited as soon as we bring out their leashes)

Her mom laughs. "Ohhhh, she looks calm NOW, but just you wait! This one has tons of energy...she can jump over five foot walls!"


Then her mom hands me a paper bag.

"Here, I got some water for you girls because it's 90 degrees outside today and I don't want you to get dehydrated. I put in two bottles of water for Lily because I know she'll be exhausted after this."

SO. Quick recap on the situation I'd somehow managed to get myself into: I am standing in the middle of the kitchen, holding a paper bag with four water bottles -- two for the soon-to-be-exhausted Standard Poodle that can jump over five-foot walls. My friend is upstairs putting on running shoes, and the dog is "getting ready" like this is going to be some Olympic event. Meanwhile, I've somehow managed to overlook the fact that it is NINETY DEGREES OUTSIDE.

Once we get to the park, Five-Foot-Wall-Scaling Standard Poodle leaps out of the backseat of the car with all the grace of a pole-vaulter and sets the pace for our walk.

Side note: I've got two speeds: CP regular and CP "fast."
Standard Poodle speed is not in my repertoire.

So I'm struggling hard to keep up and my friend is leisurely strolling along on the cement path in front of us, trying to make conversation, and I'm trying not to be socially inept but all I can think at this point is:

We pass bench after bench after bench, and each one seems to taunt me.

"So what do you want to do tomorrow?" she muses.

Sit down. Sleep. Movie marathon. 

"Oh, I don't know!" I say, attempting to sound cheerfully nonchalant and trying hard to keep the breathlessness out of my voice. "Did you have any ideas?"

"Yeah, I was thinking maybe we could go into the city and walk around all the shops, and then maybe we could go to the beach!"

"That sounds fun!" I reply, but inside I'm dying at the thought of walking ever again. "Or...or...maybe we could go see a movie," I add hopefully, praying that my voice sounds sufficiently casual. Or anything that involves sitting down. 

We continue walking for what seems like forever and my friend looks the same as when we first arrived, but I can feel that I'm getting flushed and I start worrying that my exhaustion is showing all over my face. If my friend notices, though, she's too polite to say anything.

Instead, she points to the ocean view to the right of the cement path. "Look at this viewwww," she marvels. "Wowwww."

Meanwhile, I'm glancing surreptitiously to the left. Look at these benchesssss, Wowwww. 

Secretly, I can't help but think that the farther we walk away from the car, the farther we'll have to walk back. I already can't imagine doing this all over again. As we continue down the cement path, I realize that I'm starting to feel lightheaded, and with a pang of horror I imagine my friend having to pick me up off the cement path after I've collapsed from heatstroke.


But I couldn't. Every time I opened my mouth to speak, the words just wouldn't come. I had two options: explain about cerebral palsy to my friend of ten years - OR - pass out on the cement. And I was choosing to pass out on the cement.

"Oh it doesn't seem like we've gone that far!" my friend exclaims, looking over her shoulder at the ten billion miles of cement we'd just traversed. I say nothing but inside I'm dying.

I hear my surgeon echoing in my head."You've got to be mindful because your leg is going to be uncooperative for another year or so."

That's when I see it: HEAVEN. (AKA a shaded area with picnic tables)

"LET'S SIT THERE, THAT LOOKS AMAZING!" I say, and I can't keep the desperation from creeping into my voice.

"Oh yes! This is such a cute little spot, good idea!" my friend says.

I slide onto the bench and experience a sense of relief that completely defies description. The burning sensation that was taking over my legs (especially lefty, who's still recovering) starts to recede, and I pull out a water bottle from the paper bag I was holding and drink.

I finish most of its contents in one gulp, and then I offer a water bottle to my friend.

"No thanks!" she says cheerfully. "I'm all set!"
The ocean view from the park

For twenty glorious minutes we sit and admire the scenery (and I can finally appreciate the view that she marveled at earlier) and talk about life. I probably should have seized this opportunity to talk about CP - but again, the words just wouldn't come. On top of that, the entire time, I find that I'm worrying about how I'm going to manage the walk back, so eventually I decide it would be best to just get it over with.

"Do you think we should go back now?" I say (in spite of the fact that walking all the way back is the last thing I feel like doing).

"Sure!" she says. "Let's go forward!"

"Wait," I say. "Forward? As in...away from the car?" I can't quite keep the panic from my voice.

"Yeah, the park makes a circle, doesn't it? Let's do a circle to get back to the car!"

(I know this particular circle well because my brother used to run races around half of it when he did track in high school.)

"It's five miles," I say. "How about we just go back to where we came and then if we decide we want to go farther" - please God, no - "we can walk past the car in the opposite direction."

My friend agrees to this, cheerfully, and meanwhile I'm attempting to mentally prepare myself for this journey of walking all the way back, and maybe even MORE.

We continue back - and the sun is still beating down on us ferociously - and I'm silently agonizing as my legs try to accommodate Standard Poodle Speed. Eventually, the car is in sight and I'm quietly rejoicing...keeping it cool on the outside but inwardly partying....and then my friend says, "So at the bridge" - right next to the car, right next to MY FINISH LINE - "let's turn around."

No. No no no no no.

"You mean, like...go back?" I ask. "I'm...I'm a little worried about getting sunburned," I say, trying anything but admitting CP at this point. "The sun's pretty strong."

"Yeah," she says, "but it's getting to be the late afternoon so it's probably dying down."


We turn around.

A few minutes later, I try again: "I don't want you to be late for dinner"[at 6 pm, two hours from now -I'm getting desperate].

Finally, my legs just CAN'T anymore. My CP is protesting full-force and I can feel my coordination getting worse. Every step takes deliberate concentration, and even with conscious effort, I can feel that my movements are becoming increasingly clumsier.


"Oh, we are going back!" she replies cheerfully, and at this point I'm confused. She points to a car in the far distance. "That's the car."

I know for a fact that this is not our car. That car has been my finish line for this entire ordeal. I could identify it from a hundred miles away.

"No, that's not the car," I say. "We are going in the opposite direction of the car."

"Really?" she says. "Okay...well...if you're sure, let's turn around. But if we're wrong then we're going to have to walk all the way back here!" (She says this kindly, but inwardly I'm panicking at this possibility)

We turn around and - THANK YOU GOD - after what seemed like miles, we finally reach the car. I've never been happier to sit down in my entire life.

Then she turns to me and says, "Maybe tomorrow we can come back and walk the entire circle!"



"How about we just come back and have a picnic instead?" I suggest.

"Ooh, yes, that sounds great!" she replies.

(inward sigh of relief)


I wonder why, after all these years, it's still so can I write about CP so openly here, and yet  it seems I'd sooner pass out on cement than talk about it with a friend whom I've known for ten years. I know she wouldn't have judged me - she's one of the least judgmental, kindest people I know...and it's visually obvious that I've got a disability, so it's not like it would be a huge surprise.

If I'd had a sprained ankle or a broken leg or something of the sort, I would have easily been able to say, "I don't think I can go for a walk in the park today" - but somehow, it's a million times harder to say, "I've got cerebral palsy...there's something wrong with my brain, and I don't think I can go for a walk in the park today, or tomorrow, or ever."

And I did go for that walk - somehow, my legs managed to do it, but it wasn't leisurely. It was panic and dread and "how did I get myself into this" and "should I say something" and "why can't I tell her" the entire time.

Just the other day, I had just finished up tutoring, and the girl whom I tutor (who is kind of like a little sister to me) was silent for a minute, deep in thought.

Then she said: "Do you remember the mile run from when you were in high school?"

"Yes," I said. I remembered that run. I remembered standing on the sidelines in gym class and watching it, at least. I didn't tell her that I was always exempt from it, because as we know, Complicated Cerebral Palsy Conversations are not my thing.

"It was a bad day for me today. I took fourteen minutes to run the mile and I was one of the last people to finish. Everyone was watching me and laughing at me," she said.

"Hey, I think fourteen minutes is pretty good!" I said. "It's a lot better than I could do."

"Really?" she said. "How long did it take you?"

"I don't remember," I said (see: Complicated Cerebral Palsy Conversations). "But don't be sad about fourteen minutes. I think it's awesome that you ran that mile and you finished even when they were laughing at you. That takes a lot of strength."

I think it always takes strength to persevere through difficulties, and it takes even more strength to admit that we have difficulties.

Someday, I want to get to a place in my life where I can comfortably admit that, for me, a walk in the park isn't always a walk in the park.

Sometimes we struggle. Sometimes life is difficult. And that's okay.