Monday, June 27, 2016

Surgery Tomorrow!

I know it's been a while since my last post - I have several others in the works - but I just wanted to stop in and mention that my surgery is scheduled for tomorrow, so any prayers and/or good thoughts you could send my way would be hugely appreciated. :)

I'm not really sure what the immediate recovery is going to be like (but I will write about that after the experience!), but afterwards I'm supposed to be reallllly careful / stay off my leg for about 6-8 weeks, so that should be interesting...

The tough part about having CP in all of this is I'm not really sure how the surgery will impact me. Most people who have the same surgery don't have such strict 6-8 week restrictions, but because of my CP, everything is much higher stakes. If I were to fall on the unhealed bone and re-break my leg, things would be SO bad...in fact, I'm not even sure what the extent of the badness would be, because my surgeon trailed off at that part, but I'm pretty good at filling in the blanks. They're also thinking that because of my CP, it'll take longer for me to return to my "baseline." But despite all of this, my surgeon thinks that it's the right thing to do, and hopefully it will help with the pain in my leg!

...So despite all of the unknowns, I'm just going to take a deep breath and have faith that it will all work out for the best in the end.

I won't say that I'm not scared, because I am. I'm nervous about little things, like whether they will be able to find a vein for my IV after one of my only "good" veins was used for a blood test, so there's a huge bruise in the spot where they normally try to place my IV. Here's hoping they won't need to stick me twelve times and the blood won't spurt out of my hand like it did the last time ;) I'm also nervous about some bigger things...like how I'll be immediately after the surgery, especially after my last, not-so-good experience in the hospital where my pain was hard to control and I couldn't keep down food and water...and of course, I'm worried about the long-term effects of this decision.

I think my mom might be more scared than I am though...so the two of us are heading to the beach for the day to try to relax.

I hope the next time I post here, I come with good news. :) In the meantime, thank you so much for alllll of your support...it really means a lot!

P.S. If you've sent me an email and I haven't replied yet, please know that I have read it and I LOVE hearing from you! I just want to be able to give my response the attention and time it deserves. And if you'd like to send me an email for whatever reason, I'd love hear from you too...write to transcendingcp@gmail.com.

Until next time! xo

Thursday, June 2, 2016

THE FIELD TRIP FIASCO: When everything ISN'T fine, but one person makes all the difference

STORY TIME! :)

Last December, my anatomy class took a field trip to a cadaver lab to see an actual cadaver at a large university. I was excited about the trip itself, but I have to admit that when I saw the trip outlined on the syllabus, my heart sank a little bit. With CP, it's never "just" a field trip - life is a lot more complicated than that. What if the campus isn't accessible? What if we have to walk miles across the campus (which is the size of a small city) to get to where we need to be, and I can't keep up with the class? What if it's icy in December and I fall? What if...? What if...? What if...?

What if I just email the professor and explain my situation? I took a deep breath and decided that's what I'd do. She'd probably understand better than most, I figured, because she's a physical therapist by trade and teaches anatomy as an adjunct. Maybe she'd have advice and insights for me, or she'd tell me that there was no way to safely make the trip work, and that would be okay too.

So I womanned up and sent her an email explaining about my CP. It was the end of September at the time, but I decided it was best to be proactive about it...if you've gotta swallow a frog, do it fast! ;)

I tried to make it casual but direct...here's an excerpt if you're curious:
"I have cerebral palsy that primarily affects my lower body, so my balance and endurance can be kind of iffy, and I know that [UNIVERSITY] is a huge campus and it might be a little icy in December. I was wondering if you might have any insights with regard to how much walking might be involved and/or what the campus would be like? If not, that's okay - I just don't want to hold up the rest of the class, and I have trouble handling curbs because of my balance issues, so I'm a bit concerned about getting from point A to point B. :)"

THEN - ok, this part might've been overkill, but I wanted to make sure I got my point across loud and clear - I mentioned, briefly, the incident that occurred eight years ago, when I slipped and fell and broke my femur.

"I just want to try to anticipate any issues that might arise," I wrote. "It was a difficult experience to go through and it's not something that I'd ever want to repeat if I can help it - so I try to err on the side of caution, especially when pavement and ice are involved."

She emailed me back promptly and was very gracious, saying that her goal was to provide me with the physical support that I needed but for me not to feel uncomfortable in any way.

That sounds good, I thought.

Then she asked if we could meet before class to discuss things further. I agreed. But when I arrived to class early to meet with her, there was another one of my classmates sitting next to her at the same table. I know this might sound silly to some of you that are more..."seasoned" (is that the right word??) when it comes to talking about your disability, but I REALLY didn't feel comfortable delving into my personal life with this kid listening in. I'm not ashamed about my CP, but I'd still rather talk about accommodations and personal difficulties in a more private setting.

I think she realized this, because she watched me carefully for a moment as I tried to figure out what to do/say, and then she said something like, "I checked with the program director and he said there should be no accessibility issues so I think everything will be fine."

I nodded. OK. That sounds good, I said.

In hindsight, I think both of us could have handled this situation better. Maybe she could have asked my classmate if he could let us talk alone for a few minutes or informed him that we had made an appointment to talk, or maybe we both could have gone to another table. And maybe I could have been more open - maybe, after class, I could have explained my hesitation to talk about CP in front of my classmate and pressed her further about accessibility.

But I didn't. We didn't. She told me everything was going to be fine, and I believed her.

I should have realized. I should have realized when, 2.5 months after this conversation, she told us to meet in a certain parking lot on our campus that I'd never been to before and that seemed to be in a very odd place on the map. I started walking toward the general direction of the parking lot about an hour before we were scheduled to meet there. Plenty of time, right? WRONG. DEAD. WRONG.

I ran into another girl from my class as I was walking (for the sake of the story, let's call her Emma), and we figured we'd find the parking lot together, somehow...even though neither of us really knew where we were going.

First, we ran into a CEMENT STAIRCASE with about 30 steps down. SIGH. There was a railing, so I managed, but that's about when I realized that "anticipating any issues that might arise" is a heck of a lot harder than it sounds.

THEN. Curbs. E V E R Y W H E R E. We weren't even off our campus yet, and I was already in trouble! This parking lot that she wanted us to meet at was at THE MOST INACCESSIBLE SPOT POSSIBLE.

I didn't feel comfortable asking Emma to give me a hand on the curb. Big Mistake. I took a deep breath and attempted the curb and...

I fell. On the pavement. In the middle of the road. In retrospect, sacrificing my safety for the sake of my dignity by not asking for help was a Very Stupid Idea...and it didn't even work, because there's nothing quite as undignified as lying in a heap in the middle of the road after you trip on a curb.

Emma helped me up, and a few teachers from a middle school near our campus witnessed the whole thing and offered to help as well. ("Do you want to come in and see our school nurse??" they asked. No thank you...this situation is embarrassing enough as it is!)

After a moment, though, I realized why they were asking: blood was streaming from my lip. PERFECT. WE HAVEN'T EVEN GONE ON THE FIELD TRIP YET AND I'VE ALREADY MANAGED TO GET LOST, TRIP ON A CURB, FALL ON MY FACE, AND NOW, I'M COVERED IN BLOOD.

Emma was so amazing, though - she had tissues in her backpack (side note: ever since this incident I have followed her lead and I've never been without a pack of travel tissues...you know, just in case I fall flat on my face again in the near future, which is a clear possibility when you've got CP!)...and she was completely calm about everything.

She offered to tell the professor what had happened if I wanted to go back to my room and skip the field trip, but I figured if I'd made it this far already, I might as well keep going, so - after she reassured me that the cut on my lip wasn't noticeable (and it wasn't, at least after the bleeding stopped), we continued on our way.

After a few more feet, we came across another curb. (I have never seen so many curbs in a contained area EVER. It was like my Own Personal Hell) This time, I asked her for a hand.

"Oh, yeah, of course," she said - and it was no big deal.

We made it to the parking lot just in time (recall that I had left an hour early!!).

I had decided ahead of time with the professor that I would ride with her group so that she could drop us off in front of where we needed to be instead of walking a mile from the parking garage. That part worked out well, and it actually ended up that our entire class was dropped off in front, barring the professor and the three other people who were drivers - so it wasn't really obvious that I was being accommodated...but once again, there were curbs EVERYWHERE on this campus, and most of them didn't seem to have curb cuts. Sigh.

Just when I was trying to figure out how to handle the situation, Emma leaned over and whispered in my ear.

"I can be your person whenever there's a curb if you'd like." 

This was one of the kindest, most nonchalant offers of assistance I've ever received, and suddenly, the entire situation seemed about fifteen times less stressful. It's amazing how a little bit of compassion can make such a big difference. Every time we came across a curb, she just offered her arm.

The cadavers were really cool, too, and I'm so glad I went on the trip, but the most important lessons I learned from this experience didn't show up on my anatomy exam.

That night, I went back to my dorm room and sobbed into my pillow. I had held it together all day and I just couldn't anymore. It was yet another reality check that I am living in a world that wasn't built for people like me, a world where simple, everyday structures like stairs and cement curbs make my heart race and simple assurances like "it will be fine" from a physical therapist simply aren't enough.

I cried because I was frustrated, and embarrassed, and exhausted...
but also because there are people like Emma in the world
people who will be there when nobody else is
with a smile and a whisper:
I can be your person.

Monday, May 30, 2016

Guest Posts, Graduation, and Updates!!!

-HELLO!! :) -

I am cringing as I look back on the date of my last blog post because it's been way too long since I've last posted.

I have so much that I want to write about here, so if you're still here (thank you!!), thank you for your patience!

And...thank you to everybody who encouraged me after my last post, either in the comments, through email messages, or otherwise. Your words of support and your stories meant so so so much to me. I wore open-toed shoes to so many events in the past couple of weeks...parties, dinners, ceremonies...and I wore them with confidence because I had your words with me. One of my friends even told me that she loved my shoes!!! I don't think she had any idea how much that meant to me. :)

-GUEST POSTS-

Also - I have two guest posts that I've been meaning to mention.
The first (here) is a reposting of my last post (about my foot) over at an awesome new site called Break the Parenting Mold. There are so many amazing stories to be read over there, so please check it out if you have a moment!

The second (here) is from a few months back; it's an interview I did with my good friend Tonia over at Tonia Says. :) She interviewed a bunch of people with CP over the course of the month of March, and it was so awesome to be a part of that! (And if you haven't read through Tonia's blog, you should!! She is an incredible person with an amazing heart and a serious talent for writing!)


-LIFE UPDATES-

I graduated from college with a degree in neuroscience exactly one week and one day from today! College was such a fulfilling experience for me, and graduating was bittersweet...more on that (and my entire college experience) to come soon! 

I have a bunch of posts in mind and several that are half-written - one of my goals for this summer is to be more active on this blog again. I absolutely love this community and sharing with others...and I love hearing from my readers as well!! (If you'd like to reach out to me, please do! Send an email to transcendingcp@gmail.com. Several of you guys have already reached out, and I haven't had a chance to write you all back yet, but please know that I will, and it completely made my day to hear from you!)

I'd love to stay and write here for hours, but I have to go tutor soon - so I'll leave you with this photo of my sweet dog getting a bath. She hates being bathed (and...to be perfectly honest, I'm not a huge fan of bathing her, either, because I'm soaking wet by the end of the experience!), but she desperately needed it, and she was gloriously fluffy after we dried her off.  

I'll be back sooooooon!!! :) Love you guys!

Wednesday, April 13, 2016

MY RIGHT FOOT

There's one topic related to my CP that I've never touched on here before. It's hard for me to talk about, and I almost didn't post this. I might delete it later, but maybe I won't. Maybe I'll be brave and leave this up here, because maybe it will help somebody somehow.

My right side is much more affected by my CP, and for as long as I can remember, my right foot has looked significantly different than my left foot due to spasticity, dystonia, and muscle imbalances. I have less voluntary movement in that foot, and, as I used to say when I was little, my toes on that side are kind of "crumpled."

I remember being eight years old, wearing one of my favorite bathing suits, navy with green flowers and a swim skirt. I couldn't wait to jump into the pool and swim away the afternoon, and I felt beautiful in that bathing suit.

That's when my brother's friend pointed at my right foot and started to laugh.
"What's wrong with it? It's all twisted and ugly." 

And just like that, I didn't feel beautiful anymore.

I didn't say anything back to him. I didn't cry. I didn't tell my parents what he had said. Instead, I took his words and tucked them inside of me. Something's wrong with me. I'm twisted and ugly.

Ten years later - I was a freshman in college, sick with a really bad cold one weekend, and I was taking a nap but, in a moment of sickness-induced delirium, I had forgotten to lock my door. About an hour later, I woke up in a daze to a friend knocking on my door, and she proceeded to let herself in (???). She was upset because a group of girls were excluding her and made her feel alone, and she needed someone to talk to, so despite being really sick and a little confused about why she had just let herself into my room, I climbed out of bed and invited her to sit down.

THEN -

Her eyes fell upon my right foot and she pointed - and she LAUGHED.
"What's wrong with it?" she said.

I stared at her, shocked. The same. exact. words. Ten years later.

Except this time they didn't come from an eight-year-old boy. This time, they came from an eighteen-year-old girl who I thought was my friend, who had come to my room in tears because she felt excluded. Because she felt alone.

And yet, here I was, sitting on the edge of my bed, feeling more alone than ever. I'll admit that I wanted to ask her to leave. I wanted to tell her to get out of my room and I wanted to lock the door behind her and I wanted to never let her back into my life again, because what kind of "friend" points and laughs and says, "What's wrong with it?"

But I didn't. I told her "nothing," that nothing was wrong with it, and I listened to her as she cried and told me how alone she felt. I listened as she told me about the beer stain she had gotten on her dress and she wasn't sure how to get it out, and I told her that if she spot-cleans it before she puts it in the washer, it should come out just fine.

I didn't tell her this: that there are some stains that never come out in the wash. Some stains are permanent. I never forgot her pointing, her laughing. It's amazing, sometimes, how much words can hurt. How a single sentence can leave us feeling so alone.

It's been a lifetime of those comments, of feeling nervous whenever I have to go barefoot in front of people who aren't in my family because whataretheygoingtothink? Are they going to point and laugh, ask me "what's wrong with it?" Even if they don't, is that what they'll be thinking?

Last summer, when I went on a trip with my two best friends from home, part of the reason why I was afraid to go in the first place was because I knew I'd have to go barefoot to swim. And part of me was scared of what they'd think. Sometimes it's hard to feel beautiful when everyone around you says there's "something wrong" with you.

I needn't have worried. When I came downstairs in my Crocs ready to go swimming, I tried to laugh off my insecurities. "I know," I said. "Crocs. Not exactly a fashion statement."

But my friends didn't even blink. "I think they're perfect for swimming!" one of them said. And then, when I took off my Crocs to swim, there were no comments about my foot. It didn't matter to them at all. 

At one point during the trip, my other friend glanced, with a contemplative expression, at my feet, and I wondered. For a moment, I wondered. Was she looking at my right foot? I knew she wouldn't make fun, never...but what was she thinking?

"Did you know," she said with a smile, "that we're sock buddies? I have the exact same socks!!"

Oh! :) She had no idea how much her words meant to me. How a single sentence left me feeling so happy.

But even with those experiences to boost my confidence...in the next few weeks, there are a bunch of dances and formal events coming up. The only pair of formal shoes that will work for me and that will match with the dresses I have, are open-toed shoes. And I guess I'm back at that same place I was when I was eight years old...there's a part of me that is scared.

I'm scared of what my friends are going to think of my foot. That sentence sounds ridiculous, I know, especially because the group of friends I have here are some of the most genuine, incredible people I've ever met. But it's hard. I can't help but to be worried about what they'll think, and I'm worried I won't feel beautiful, even though I love my dresses.

I want to feel beautiful at these formal events. I know it's what's on the inside that counts, and I really do believe that. And I truly embrace my CP as something that has brought so much good to my life. But I can't shake those words and the lifetime of hiding my foot from other people.

If anyone has any words of advice, or encouragement, or any words at all that aren't along the lines of "What's wrong with it," it would mean so much to me if you'd leave a comment.

I'm going to try to be brave. I'm going to try to wear those open-toed shoes.
I am more than those words, more than that laughter.

I am me.
I am enough.

Monday, March 21, 2016

(Probably-Maybe-Probably) Surgery!

I'm not really sure where to begin, but I feel compelled to say that my feelings at this point in my life are oscillating steadily between "What did I do to deserve such an amazing life with such incredible people?" and "Why does everything have to be so difficult?"

Last Monday, I had another doctors' appointment and the orthopedic surgeon advocated in favor of me having surgery to remove the pins in my leg. He said that he is reasonably confident that the surgery would alleviate the pain in my leg (as he could feel the pins moving when I extended my hip), and he remarked that it would be "relatively low-risk for a potentially very high reward."

He also watched me walk and described my gait in anatomical terms to a fellow doctor that appeared to be shadowing him—and I have to laugh because I don't think they expected me to understand their medical jargon...but just a few short months ago, I crammed for my anatomy final exam, so I knew all too well what they were saying!

Then he assessed my spasticity (the "tightness" in my legs) and he said something to the effect of, "Given the amount of spasticity in your legs, I am AMAZED at how well you are able to function. You are remarkably mobile. Wow." I'm not quite sure what to make of that comment...my spasticity is not so great but I do well anyway? (I guess I AM transcending CP. Ha! Ok, bad joke. I'll stop now.)

My right leg is tighter than my left, which I already knew—but to give me some more range-of-motion on my right side, he also wants to cut a muscle in my right leg while he's removing those pins from my left.

All of this has left me with so many mixed emotions. First and foremost, I think I'm hopeful that maybe this surgery could get rid of the pain I've lived with for the past 8+ years.

But I'm also scared. Terrified. What if I go through all of this and it doesn't work? The pain I feel now is near-constant when I move my leg, but it's definitely tolerable. It's not excruciating. It would be AMAZING to have it gone, but what if I'm being too picky about my quality of life? "You ought to just be grateful for what you have" is warring with "If this could get rid of the pain in your leg forever, you need to take the chance and try."

And then there's the issue of recovery. It would take 2 months for the holes in my bone to fill back in, and during that period, I'd have to be SO careful (i.e., wheelchair outside the house and crutches/very careful movement indoors) because a fall would be VERYVERYBAD. All of this sounds painfully familiar to my initial break 8 years ago, and after that one, my surgeon looked me in the eye and told me that I'd never walk independently ever again, and that I'd probably have to use a wheelchair for the rest of my life.


There's nothing wrong with using a wheelchair, nothing at all. But I've worked so, so hard to get where I am and to defy those expectations. The thought of potentially having to defy them again....the thought that maybe, just maybe, this surgery could take away my ability to walk, something I've worked SO hard for....that's hard. Here I am, 22 years old and graduating from college in a few months, and I'm worried about jeopardizing my ability to walk—I try not to wallow in self-pity because I DO have a lot to smile about :) , but sometimes the weight of it is hard to bear. 

Right now I think I'm about 90% in agreement with my doctor that I should have the surger(ies), and we picked a date for it and everything. I'm at a unique point in my life where this wouldn't interfere much with career plans and the thought of living my life without pain in my leg after 8 years is almost incomprehensible, in the most amazing way. 

If I do go through with it, it's still months into the future (not until the summertime), so it's not an immediate worry. In the meantime, I'm trying to focus on all of the things that make me smile, and there are many (e.g., I made penuche yesterday and it's AMAZING!! It's kind of like a butterscotch maple fudge. If you can't imagine how that tastes, just close your eyes and think about how HEAVEN would taste and that's pretty much it! ;))! 

Friday, February 12, 2016

I Spoke. People Listened.

When I came to college four years ago, I could barely write about my CP, and yet here I was this past Tuesday, standing at a podium speaking about it to an auditorium full of my classmates. My heart was beating wildly and my words perhaps weren't as graceful as they could have been, but I did it.

When I started this blog back in October of my freshman year of college, I don't think I could have dreamed up a universe, parallel or otherwise, in which I could speak about my disability in front of a crowd of people who were (mostly) strangers. That, to me, was unthinkable, and yet, this week, I did it (no diversions needed!).

And I think what has been most surprising and gratifying about this whole experience is just how many people seemed to appreciate it. So many people came up to me afterward, or caught me on my way to class in the next few days, and said that it meant a lot to them that I shared, that it touched them in some way. 

My presentation wasn't perfect by any stretch of the imagination. I'm sure I sounded nervous, I know I stumbled over some of my words, and the entire presentation was only about fifteen minutes (and about half of it was about some scientific articles rather than my own experiences).  Even so, this small feat feels like a huge victory to me. I'm proud that I was able to stand up there and speak about what I've been through, and I don't think it's something that I could have done without this blog and without all of your comments and encouragements over the years. You all have taught me that my experiences are nothing to be ashamed of, and that who I am, what I've been through - it matters, and it can be used to make the world a more beautiful place.

This blog has literally helped me to find my voice. 

Friday, February 5, 2016

Speaking (OUT LOUD) about CP???

Hi again!!

The spring term (and final semester of undergrad?!!) started on the 24th and I've been so busy that I haven't thought to post until now.

My birthday was on the 20th (while I was still home) so we went to my brothers' college and had dinner at a pizza restaurant. It was a fun time, and it was awesome to see my brothers again.

But then, last weekend, my sweet college friends threw me a surprise party! I had no idea and thought we were just on the way to dinner as usual, and then they threw a birthday sash around me and led me to our common room, which they had decked out with balloons and streamers. I was so touched that I just about cried!!! We spent the night eating pizza and cupcakes and playing games, and then we went out to see a horror movie (have I mentioned that I'm a horror movie fan?! A lot of people are surprised by that!).

I think part of the reason I haven't posted in the last few weeks is because, despite my last post (which was kind of heavy), I haven't thought about CP too much lately. Sometimes I forget about it completely for a while...it's always there, and like all of us, I have tough days sometimes, but this is my "normal" and I am happy.

I've been thinking about it more in the past few days, though, because I'm taking a seminar course about neurological diseases, and my professor said that he'd like me to share with the class about my CP. I'm giving a presentation about ischemia (i.e., reduced bloodflow to the brain; stroke) on Tuesday and since my CP was caused by a hypoxic-ischemic injury, it's conceivably relevant to my presentation topic. My first thought at this request was "NOPE." I'm comfortable writing about my disability now and was more than fine to share with my classmates via that medium, but thinking back, I don't think I've EVER spoken aloud about my CP in detail to anyone, not even my own family. My family didn't like to talk about it, and I think they preferred that I didn't bring it up to others, because they didn't want it to be an emphasis in my life. I understand that. I understand what they faced when I was younger, with teachers assuming that I was incapable before they even got to know me. There's a certain stigma to "brain damage." I feel as though I can write about my experiences so easily, especially to you guys because you "get" it...but speaking about it to a roomful of people, many of whom I barely know....that's intimidating. I don't think I've ever spoken the words "cerebral palsy" aloud before. I don't know if the words will make it out of my mouth. I'm not ashamed of my disability, but it still feels like a "forbidden" topic of conversation.

And yet. I told him I would. I told him I'd speak to an auditorium full of my classmates about cerebral palsy. About me, my life, the neurobiology underlying my condition. I don't know how it will go. I'm terrified that I'm going to get up there and the words aren't going to come, or that I'll get nervous and it will seem as though I'm ashamed, and that's the exact opposite message I want to send. But if it goes well, I think it might help my classmates understand about disability. That's what I want. Understanding. Compassion.

I sent a text to one of my best friends about it. She's in the class with me, and she "gets" me kind of like you guys do, even though I don't even think she knows that I have CP (like I said, I never talk about it, and it's obvious from the way I walk that I have a disability, but I've never gone into details with anybody before).

Whatever you decide to do, I will support you, she wrote. Whatever you have, know that it doesn't define you...it's just something that happened to you, and I see it as just one part of what makes you amazing. And if, midway through, you feel awkward about talking about it, just give me a signal and I will leap across the row of desks and cause a diversion for you. ;) 

I couldn't help but smile. :)