Saturday, April 14, 2018

Surgery Tuesday ... and GOING PRIVATE (Please read!)

Sometimes I wonder: What would my life be like today if this blog never existed?

This little corner of the universe has given me so much. It was here for me when I needed somewhere safe to share about my CP. Here for me when I felt utterly alone, or scared, or helpless. Here for me when I wanted to celebrate wrecked shoes or newfound curb skills or no more pain. 

And it has given me beautiful, irreplaceable friendships. 

It has also helped me grow. When I started this blog, I couldn't say the words "cerebral palsy" out loud. CP almost never came up in conversation. In many ways, CP was a part of myself that I tried to hide.

Lately, though, I've been finding myself in a strange place: I'm starting to open up more about CP to my family and friends, but I'm not ready for them to find this blog. As I move toward writing more openly about disability, I want to be in control of what I share, and many of these posts are deeply personal and detailed. 

So I've decided to turn this blog private. I still want to write here. In fact, maybe going private will allow me to write more freely! But I wanted to let you guys know first so that you can request an invite from me if you want to keep reading (it looks like Blogger would have me enter the email addresses of readers to invite them). 

I think there's a 100 reader limit, so hopefully I don't have more readers than that (I don't think so, as I haven't posted in a while?). If you want to keep reading (even if we've never talked, and you just lurk here - promise I won't judge!), send me an email at transcendingcp@gmail.com so I can send you an invite. Not sure of the exact timeline of when I'll turn this private - I'm focusing on getting through recovery for now (see below), but I'm thinking it'll be in the near future. I won't be replying to the emails but I'll write down your email address for the invite.
In other news: I'm back in St. Louis! This time for minimally invasive hamstring lengthening surgery on Tuesday. I'm nervous - it's another hospital stay, another recovery - but I'm hopeful it will help me reach my full potential! Also hopeful it doesn't take them five tries to get an IV in me and that I don't wake up from anesthesia nauseous, but I'm not holding my breath on that one. ;) Would really appreciate your prayers and positive thoughts! 

Thursday, December 21, 2017

My Follow-Up Appointment in St. Louis: Reunions & Science Museum Before the Big Day

Real Talk - I haven't written in forever because I can't figure out how to do St. Louis justice!!! But I figured writing something that falls short of perfection is better than writing nothing at all, so here goes! 

Sunday morning, we headed into the lobby and saw one of my favorite dining staff members from the hotel....the same woman who had come running out to the shuttle on the morning of my surgery to give me a hug and a prayer before I left for the hospital. I immediately ran over to her to give her a hug, and this time we got a photo with her too!!

Then we went for breakfast at the hotel...the waiter recognized us immediately! :) I had wondered if maybe they would have forgotten after four months, but no...they remembered. And then the amazing woman who I'd just reunited with - the woman who gave me the shuttle hug! - came over with a paper bag full of popcorn and snacks for my brother and me. It was so sweet....and those snacks came in handy when I needed some energy during my hospital appointments the next day!

Then we took an Uber to the St. Louis Science Museum, and as we waited to get inside, I recognized a woman from England whose children both had SDR, and I introduced myself. We only spoke for a few moments, but that instant connection never ceases to amaze me....strangers become friends in mere seconds.

Science Museum Marble Contraption! The Children's/
Hospital has a mini version of this, courtesy of the museum :)
Sputnik Toothpaste, photo courtesy of my brother.
IDK why, but this is one of the few photos we have
of our museum trip.....

The museum itself was awesome!! There was a King Tut exhibit that was amazing, and we saw a couple IMAX movies about Egypt and the Amazon, as well as a planetarium show where we got to lie down on the floor for an hour (highlight of the day for my tired feet ;)). Long story short, if you are headed to St. Louis, definitely check out the science museum!! We thought we'd just spend a couple hours there, but we were there the whole day.

And the evening was even more memorable: two other women who had SDR in July were also in St. Louis for their followups, and we met for dinner. Over the past few months as we've navigated this journey together, we've become friends, and was so powerful to be able to speak about our experiences in-person, both SDR-related experiences and CP experiences in general.

Also?? Just as we gathered together, the English SDR family entered the room! It was such a serendipitous moment: at one point, there were five people in that room with CP...five people whose lives had been changed by Dr. Park.

Afterward, we returned to the hotel to prepare some gift bags for the SDR patients we'd be visiting, and I went to bed feeling surrounded by people who understand (and share!) my journey. I was more than ready for the day ahead.

Thursday, December 7, 2017

10-Year Anniversary of "That Day" : December 6th, 2017

Before I turn in for the night, I just wanted to write a note about today (well, technically yesterday by the time I publish this post!)...December 6, 2017. Ten years after That Day. That Day started out ordinary...my mom had reminded me earlier in the day that we were going to work out at the gym after school, I suddenly remembered that I lost my library book, and then I headed off to my first period class. Later that day, I told my friends I'd meet them at lunch, but I never made it there, because I slipped on a puddle of water about twenty feet from the cafeteria and broke my femur.

Ten years, countless hours of rehab, and two surgeries later, here we are. When I opened my eyes again this morning, I was struck again by how ordinary the day seemed, and yet that only made me feel more nervous. Because Extraordinarily Terrible Things can happen on Ordinary Days. (How's that for a late night optimistic thought?!)

I'm not terribly superstitious, but I kinda felt like pulling the covers over my head and skipping to December 7th.

I am so glad I didn't.

Instead of reliving those memories from December 6, 2007 (as I do far too often), I'm going to relive today for you.

I slipped on my favorite reindeer pajamas, sipped hot chocolate in my favorite mug (with peppermint!), Google Hangout-ed two of my Very Amazing Friends, and together, we decorated my Christmas tree.

Today, December 6th was a day of celebration. Celebrating Christmas and No Pain (it's only my second anniversary of NO PAIN since That Day!!!!).

Later on, I went to PT and it was agility day, and my stomach dropped for a second...agility day, TODAY? But what if I fall? For a second, I almost wanted to leave, but I took a deep breath and pushed through.

For the record? I did fall. But this time, I got back up.

I tapped cones with one foot, weaved through obstacles, leapt forward as far and as high as I could. I even practiced zig-zagging from one cone to another as fast as possible (and we had a good laugh over how I managed to get lost and confused in a grid of four cones...have I mentioned that my sense of direction is non-existent?!).

December 6th will never "just" be December 6th to me. The ache will always be there, even now, when my physical pain is gone. I still battled all day with that irrational, nagging feeling that something terrible was going to happen and that I was going to be writing this blog post several days later from a hospital room.

But December 6, 2017 was the best December 6th I've had in this entire decade.

(Coming Soon: My St. Louis trip and follow-up appointment, full of awesome photos courtesy of my brother's cameraphone, which is more high-def than my vision ;) ) 
(I promise I'll write soon!) 
(I also promise to reply to the unanswered emails in my inbox!) 
(I'm sorry!) (I love you all!) (I really do read every email!) (THANK YOU!) 

Saturday, November 11, 2017

Arrived in St. Louis for my Follow-Up!

Just a quick I've-been-up-since-5AM update! My brother, mom, and I arrived in St. Louis today for my 4-month post-SDR follow-up appointments this week.

Our ice cream...Dark chocolate with butterscotch,
pecans, almonds, and salted caramel. Amazing!
I'm completely exhausted but it feels good to be back...almost like I've found my way home. When we arrived, we met up with another SDR family who's back this week for follow-ups, and that's been my favorite part so far! We reunited in the middle of a grocery store, and we definitely got a few weird looks from the grocery store employees...but so worth it!! One of my best SDR friends is an eight-year-old girl who had surgery a year before me, and as soon as we saw each other, she ran at me for a giant hug! Then we took selfies and she gave me a little tour of her favorite grocery store items. Moments like this mean so much to me...I love that we've connected because of CP and SDR, and yet we also can talk about the trivial stuff. :)

Then, we (my brother, mom, and I) went to a local taco place, and it was good, but it wasn't nearly as good as the ice cream place we went to afterward, Jeni's. This ice cream, you guys? It's like the Holy Grail of ice cream. In my brother's words: "It's a good thing this place is more than 800 miles from home because if it were any closer, I'd be here every day."

My appointments (filmed PT eval, neurosurgeon, and orthopedic surgeon) aren't 'till Monday so we've got tomorrow free to do some exploring!

In the meantime.....my bed looks so, so comfortable after this crazy long day. Goodnight!

I'll leave you with a few more pictures. Sorry not sorry - they're all food-related! Maybe tomorrow I'll try to capture something other than food, but no promises. ;)

Ice cream place!

The MENU! Between the 3 of us, we sampled like 10 flavors
before we finally settled on our choice. ;) Such difficult decisions!

Taco place!

Wednesday, October 25, 2017

5 YEARS & AN UPDATE

I can't believe it's been five years since I took the leap to make this blog. Five years ago, it never occurred to me that this blog would help me find a community....friendships. Togetherness. Thank you (yes, you!) for being here...for reading and for caring about these words in this little corner of the Internet. If it weren't for you guys, I would have just gone back to writing my thoughts in a journal, but there's something inherently powerful about sharing.

Anyway, it's been a while since I've posted here, so I thought I'd share an update while I'm here.

I'm headed back to St. Louis in a few weeks for my SDR follow-up. This time, my brother is coming with my mom and me, and we're so excited about that! I can't wait to show him the city that changed my life. I'm looking forward to reuniting with some SDR friends too - a fellow adult whose follow-up is the same day as mine, and a little girl I befriended who had surgery a year before me. :) 

I'm excited to see Dr. Park and to show him how far I've come in these past few months, but that part also brings some nervousness. While I'm there, I've got to do another eval, similar to the first one, where I'll demonstrate my motor skills in bare feet while being filmed, and then they'll translate my movements into numbers in order to examine how much progress I've made (!!!). 
At Pilates. :) My socks say "be unique."
They make me smile because they remind me
I don't have to be perfect...I just have to be me!

And? Dr. Park will tell me if I need hamstring PERCS ("minimally" invasive lengthening) this summer. I was talking about it with my mom last night, and we ran through the different scenarios in an attempt to mentally prepare ourselves. I have made noticeable, visual progress since my pre-op eval, but our gut feeling is that they'll still recommend surgery, especially on my right leg but probably on both. I think I'm okay with that...but there's another part of me that's tired of this. Tired of hospitals and surgeries and recoveries. Wanting to move on with my life.

For now, though, I'm trying to focus on the positive parts of this trip in front of us, because despite the nerves, I really am looking forward to it. I'm hoping I can keep it together when I see Dr. Park again, because what do you say to the person who's changed your life??? 

Post-SDR, I feel so much more (physically) comfortable in my own body. Visually, I think my gait is pretty similar to pre-op, but it takes so much less effort to move. I can wake up in the morning and start walking immediately. I fall so much less. Exercising is actually enjoyable, and stretching doesn't hurt so much, and my balance is much better. And - believe it or not, this is a new skill - but I can straighten both knees at once when I stand!!! 

It hasn't been easy, but for me, it's been so worth it. 

I'll write again soon - hoping to get a few more posts in before our trip - but for now? Thanks for being here. Five years of blogging feels amazing, thanks to you. :) Here's to many more!

Thursday, September 14, 2017

On My Bad Leg


When I was little, a neurologist told my parents that they should encourage me to be left-handed, because my right side - including my right hand - would be more affected by CP.

They tried. I resisted. I'd pick up a crayon with my right hand, they'd switch it to my left, and I'd quietly and unceremoniously slip it back into my right.

Eventually they gave up trying to change me according to a doctor's orders and just let me be who I am. As I grew older, it became clear that my hands were very minimally affected by my CP, if at all. Yet that doctor wasn't entirely wrong. My right side - specifically, my right leg - is significantly more affected than my left leg.

That difference has always been obvious, but post-SDR, it's even clearer. My left leg has been stronger from the start, quicker to build further strength, and easier to stretch. Visually, my left knee turns in less and the calf muscle is noticeably larger.

Oftentimes in PT, someone will notice one of these differences and comment. The words leave my mouth before I can stop them:
"My right side is my bad side." 
(Or, conversely, "My left side is my good side.")

I say these words, and yet I know deep down that they are not true. My body is not divided. It is not a split entity between "good" and "bad."

I'm not usually one to get caught up in semantics, but I am trying to change my language. I want to view my entire body - my entire self - as inherently good.

Sometimes, though...sometimes it's hard.

Yesterday, it was hard.

Yesterday, I had my first progress evaluation in PT.

Overall, it went really, really well. My progress over the course of the past two months has been awesome: my balance is better, my strength and endurance have increased significantly, and I am in much less pain as my body continues to heal.

And yet there was one part of the evaluation that felt like a punch to the gut. I've been working so hard on stretching my hamstrings, trying to avoid another surgery. If I can't get my range-of-motion to a certain degree by my follow-up appointment in November, I am probably going to need lengthening. It's a minimally invasive lengthening surgery called PERCS, and it's supposed to be much less traumatic than the tendon surgery I had when I was two. But there's no getting around the fact that it's another surgery. Another hospital stay. Another recovery. I really, really don't want to go through everything that entails if I can help it.

Over the past two months, I've gained significant range-of-motion in my hamstrings on my left leg. On my right leg? Not so much.

It was hard to watch my mom's face fall in disappointment as the PT read out that number...a number that still seems impossibly far away from where we need it to be. It was hard not to think of my right leg as my "bad leg" in that moment, because it causes me so much more frustration and worry and heartache compared to my left.

I wish I could say that those range-of-motion numbers don't matter. For me, they do. I want so badly for those numbers to go up so that I can spare myself from further pain and tears and anxiety. But I will say this: those numbers aren't everything. Those numbers don't define the worth of my body. They don't define me. They don't even define my right leg.

Righty, if you're listening? I appreciate you. I know we've been through a lot together, but I think you're pretty awesome for continuing to try, and for getting me where I need to be. And for the record? I don't think you're bad.

You're part of who I am, 
and no matter what happens, 
we're in this together. 

Saturday, September 9, 2017

SOS: When you're stuck on an island and bleeding profusely

It's 4 p.m. on Monday, the fourth of September, and I'm holding my mom's hand as we walk along the beach. The sky is peaceful, calm, and the tides have retreated, leaving behind a wide expanse of flat, wet sand that is scattered with rocks and shells. The stairs to my uncle's house are about fifty feet in front of us.

As we step, we are trying to be careful to avoid sharp rocks and shells, but it's a nearly impossible task.

"Don't worry," my mom says. "We are almost to the stairs!"

That's when she looks down at my feet and gasps.

"Blood," she says, and at the panic in her voice, I follow her gaze.

Blood. Everywhere. A seemingly endless stream of red stains the sand surrounding me. My left foot is so covered in blood that I can't identify the source.

My uncle, who is standing twenty feet in front of us, runs over and carries me to a rock in the middle of the beach. He sets me down, and runs toward the stairs to get his girlfriend to help.

"So much blood. So much blood. There's so much blood." My mom keeps repeating this, and there's an edge of hysteria to her voice that makes me wonder if she might pass out.

"It's okay, I'm okay, I'm okay," I say. I'm not quite sure if I'm talking to her or if I'm talking to myself. The beach starts to spin, and I close my eyes. I'm afraid to say that I'm dizzy, because I'm worried my mom might faint. But it's almost as if she knows, because she gets down behind me on the rock and opens her arms so I can lean back. I close my eyes.

When I open them, my uncle's girlfriend (we'll call her Karen) is running toward me with a dishtowel and a pair of kitchen scissors. My uncle trails behind her with a first aid kit.

Karen looks down at my foot, at the blood streaming steadily down the rock. "Oh my God," she says.

She thinks I might need stitches, but my aunt and uncle (who share the same blood clotting disorder that I inherited) think I can get by without them.

"Well..." she says. Her hands are covered with my blood, but her voice is suddenly bright - almost cheerful. "I could suture you up right here if you want! I have a suture kit right here!"

NOPE NOPE NOPE. She's a biochemical engineer, so she knows her science, but even if she was a doctor, I don't know if I would be brave enough to let someone give me stitches in the middle of the beach, especially since my feet are still a bit hypersensitive from SDR.

The sunset on the island :) I took this after dinner,
during the second rebandaging of my foot. 
As they rinse off my foot, it becomes clear that the source of the bleeding is a pretty deep gash on the top of my big toe. They bandage it up with gauze, wash off the bloodstained rock that served as my makeshift exam table and I get to my feet to make the trek up the stairs.

("I'm so impressed you didn't even shed a tear!" someone says. "If it were me I think I'd be sobbing."

Well, after everything's she's been through lately, this is nothing, my mom says. #truth...CP has steeled me!)

As I step, my foot continues to drip blood, so they have to rebandage everything at the top of the stairs. I'm told not to look because there's still a lot of blood, so someone drapes a beach towel over my head. ;)

Later, I join the family for dinner and then we have to rebandage everything AGAIN...and then at some point on the way home, we realized that it was still bleeding significantly. My aunt (a nurse) met us at a CVS and applied some steri-strips and some clotting medicine, using a flashlight to see in the dark as I propped my foot up on the dashboard of the car.

My sad toe :( This is from today, 5 days later.
I took a bandaged pic because I don't want to traumatize anyone ;)
On Tuesday afternoon (24 hours later), I could walk on it, and it didn't hurt much, but every time I stepped, the cut began to bleed again...so we went to a walk-in clinic. The doctor there (who was the same doctor who saw me at the urgent care center when I broke my femur in 2007!) said that I probably should have gotten stitches, but it'll heal up on its own with the steri-strips to hold everything together.

I was really discouraged by this injury because I was afraid it would interfere with all of the progress I've been working so hard to achieve...but luckily, it hasn't slowed me down much! For some reason (maybe it's an SDR thing or a CP thing) it barely hurts at all, and I only missed one day of PT (Tuesday - the day we went to the walk-in clinic). I stopped doing the treadmill for a couple of days, but otherwise, I've been continuing as usual. Today I met with my personal trainer and she was so happy with the strength I've gained in the past two weeks. My squats are looking better, and my core is engaging more as my back heals. And the BEST part? When I was using the abductor strengthening machine, I can now press my knees completely against the pad. When that happened, we didn't say anything...we just stared at my knees in silent reverence until the last repetition, when she pointed and said, "Do you SEE that??" :,)

I wish I could go back in time to five days ago, to the moment when I was curled up bleeding on that rock in the middle of the beach, whispering
I'm okay.
I'm okay.
I'm okay.

I wish I could go back to that moment and say
Yes.
You're okay.
You're okay.
You're okay.
You can do this
and you will.