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