Tuesday, June 13, 2017

Feeling more "real"

I just wanted to stop by to update you all on what's been going on. Today's post will be less structured...more like a stream-of-consciousness journal entry. :) Actually, I was going to handwrite something like this into my personal journal, but I figured I might as well write it here so that you guys can follow along if you'd like. 

If all goes according to plan, we will be boarding the plane to St. Louis exactly three weeks from today. Every few days, my mom asks me, "Nervous or excited?" ...and every time, my answer is "both!" The prospect of somebody cutting into my spinal cord is pretty terrifying, I'm not gonna lie...but I can hardly imagine what it will be like to be free of spasticity.

At the moment, I'd say my excitement actually outweighs my nervousness. Most people with my degree of CP have had several surgeries to improve their mobility by the time they reach young adulthood. I've had my fair share of surgeries, to be sure, but the only surgery directly related to improving my movement reaches beyond my memory. I was two years old when I got those six scars. 

My life has been changed completely for the better ever since my last surgery (June 2016, in which I had the pins removed from my hip). I am eternally grateful for that, eternally grateful for no more pain in my leg. But in some ways I feel as though it just got me back to baseline...it put me where I would be if I had never broken my femur in December of 2007. 

SDR has the potential to be different. For the first time in my memory, I will get to experience what it might be like to move easier. 

It's crazy to think that the date is coming up so fast. The plane tickets are booked. Hotel booked. And last Saturday, my wheelchair arrived. I tried it out in the kitchen, spinning in circles and laughing, and then I saw my mom standing in the doorway. Her eyes met mine for a moment, and then she turned her face away. 

"It just feels so real now," she said. 

She's right. We're both grappling with that bittersweet feeling...that strange mixture of terror and excitement that comes right before you know your life is about to change. 

I've got a few more events on my calendar to keep me busy before the day comes when we get on that plane...Last weekend, I hung out with some friends that I haven't seen in a while. We talked, cuddled dogs, ate Chinese takeout, and watched a bit of The Great British Baking Show. :) The next few evenings will be spent helping my student(s) cram for final exams. Late tomorrow night, one of my best friends is flying in and we'll get to spend some time together. Then, if the stars align, I might get to see one of my college friends over the weekend...then Father's Day.

After this weekend, I'll probably start laying low...but at least for the next few days, there's plenty going on! 

I've got more to write, so I'll be back soon, but I think I'll end it here for now. :) Until next time! Thanks for reading, as always...you guys are awesome!

Monday, June 5, 2017

The s-word and the conversation I am dreading

It's the middle of the afternoon, sometime toward the end of March. I am sitting on the piano bench beside the girl I tutor, helping her cram for her music test. In the next room over, one open door between us, my mom is talking on the phone with my uncle. Her conversation is loud enough that we could maybe hear what she is saying if we paused, and yet the notes from the piano mingle with her words, blurring them beyond comprehension.

We coexist - her words, our notes. My fingers slide over the keys as I demonstrate how to play a scale.

"Now you try," I tell my student, folding my hands in my lap. Her fingers fumble to replace mine on the keyboard and attempt to replicate my movements.

She plays, misses a black key. We pause.

"Almost," I say, "but not quite. Here, I'll show you again, it's -"

There's a moment of silence as my hands find their place on the keys again...just a few seconds of quiet, but it's a wide enough space that the words from my mom's conversation are clear. We both hear them, and two words in particular stand out from the rest.

The first word? My name. The second: surgery.

My student turns to me, alarmed. "You're having SURGERY?" she says, her voice an uncomfortable mixture of pity and incredulity.

I feel the heat rush to my face.

"Oh, yes, I had surgery last year, remember? To take the pins out of my leg," I say.

"You did?"

"Yes, don't you remember? I told you. I definitely told you!" My voice is playful, gently chiding her for her forgetfulness, but my insides are churning, because I know that this is not the surgery my mom is speaking of. But I don't want to tell this girl. Not now. Not yet. Not ever.

And - yes - truly, I had told her about my last surgery. I mentioned it with a single sentence, months after it happened. Somehow, it's easier to talk about events that have already occurred, after they've been stripped of the risks and the maybe's and the what if's. And once they're past-tense, there's less room for pity.

But now...at all once....my mother's words no longer coexist with our music. I am wishing that she would stop talking, wishing wishing wishing that this part of my story would stop spilling through that open door and into this room.

My student plays the scale again, misses the note again. Her eyes seem far away, and I wonder if she's trying to listen to more of my mom's words. In between the notes on the piano, I catch snippets of the conversation, phrases leaping out at me, jolting me, misplaced sharps and flats. "Spinal cord nerves" - "St. Louis" - "this summer." 

I force myself back to this moment, back to the piano keys in front of us.

A few minutes later, my student turns to me with a look of dawning realization. "Ohhh, I remember!" she exclaims, stumbling through the scale again.

"Yes, it's an F-sharp that you're forgetting," I say.

She stares at me, confused, then laughs. "No, no, not that. I remember that you told me you had surgery last summer."

~

More than two months later, I am facing the uncomfortable reality that I have to tell her for real this time. My student's final exams are scheduled soon before we leave for my surgery, and I can't afford to get sick beforehand. An illness before surgery might mean that I'd have to reschedule, which would be a logistical nightmare on too many levels to count.

So to be safe, I have to cancel the last few days of my tutoring. My student has other resources and other people she could probably go to for help, but I have to tell her soon so that she can make these alternate arrangements.

But I'm dreading it.

I wish so badly that I could skip all the details and just tell her that I have to cancel because I have a trip coming up and I don't want to get sick beforehand...but how selfish does THAT sound? ("I'm sorry, I'm abandoning you for your final exams because I don't want to get sick before my vacation!") No, there's no getting around it....I have to use the "surgery" word.

Somehow....somehow, I have to gather the courage to tell her, and SOON. I'm thinking that maybe I'll text her about it in advance so that we can break the ice, and then we can talk about it more in person.

But I'm afraid. I'm afraid that when I tell her, my words will be rushed and shaky and uncertain. I'm afraid that she'll hear the word "surgery" and panic, looking at me with that pity in her eyes. I'm afraid that she'll panic for herself, too, once she knows that I won't be able to help her study for final exams. And most of all, I'm afraid she'll ask questions...that she'll want to know details about the surgery itself, which I don't feel comfortable sharing with her. I can talk to her about musical scales and muscle anatomy and parabolas and systems of equations...but not this. Not cerebral palsy, not spasticity, not hospitals and surgeries and rehab and recovery.

Not this.

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 transcendingcp@gmail.com. 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

video

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 (or...in my brother's case...to 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 forever...it'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,
K

Tuesday, October 25, 2016

FOUR YEARS

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: transcendingcp@gmail.com

LOVE YOU ALL!