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. :)

Tuesday, January 5, 2016

Challenges, Pain, Life Plans...and Polka Dotted Socks, Mind Control, and Reflections!

I have not forgotten this blog, and I will never forget all of you. I really appreciate all of the advice I received regarding graduation commencement accommodations - you guys were so helpful and so encouraging! I've arranged a meeting in February with the events coordinator at my school, and I will definitely go back and reread all of those comments before we meet. :)

It's been a difficult chapter of life for me and sometimes I feel that it's hard for me to take a moment to be vulnerable here because I need to be strong and focused and push my feelings aside. But I think that needs to change; when life gets tough, I need to remember to turn here again, to write and release and share.

Academically, this was probably my most difficult semester yet, even though my grades were good. I had a lot of demanding, science-heavy courses and a few good friends taking them alongside me. My friends have helped me through so many challenging times while I've been at school, and at times I've felt bad asking them for a hand to manage a curb, or I've felt as if I've slowed them down because of my CP. But this semester especially, I've come to realize that these relationships were reciprocal all along. I won't share the details here because they are part of my friends' stories, but I now understand, truly, that support can come in so many different forms, whether it be a 3 AM phone call or a hand on the sidewalk.

As I near my last semester of undergraduate college, I'm grappling with what's next in my journey. My neuroscience major combined with my life experiences as a person with CP have revealed to me that I would like to pursue a career in medicine, likely as a PA. I'm still working on the details of that and exploring my options, but that's another post for another day.

The heaviest burden that I am dealing with right now is the realization that this junction of my life is probably my last chance to easily seek out medical interventions to improve my physical functioning as much as I can. That is, if I need some sort of surgery, it would be easiest for me to have it done sooner rather than later, before I dive headlong into building a career for myself, attending graduate school, and working. Thinking about surgery isn't my idea of fun, and I get around well enough that I don't think it's a necessity at this point...but if it could make my life easier long-term, then I definitely want to consider it.

The pain in my hip is something that I live with every day, and I've lived with it for the past eight years - ever since I fractured my femur and had to get pins in it. The initial pain of that break almost defies words...but I've tried to capture it below - this is something that I drafted a few weeks ago and wasn't sure if I was going to share it because it's kind of heavy.

I do not remember much about that pain. I remember that when it was there, it was everything, all-encompassing, excruciating. Somebody was screaming, begging for it to be over. Help me. Help me. I am at the mercy of my body.

How bad is it on a scale of one to ten? Nine, I say. I am not sure if it is a ten, the worst pain I have ever felt, but it is the worst pain that I can remember. 

My vision goes spotty. Somewhere, a voice tells me that it will be over soon. The next thing I remember is nothingness, the sudden absence of feeling, and it is beautiful.

When I am discharged from the hospital a few days later, they give me lots of pain medication, something stronger than morphine, and they instruct me to take it every few hours for the next few weeks. 

I only take the meds for one day. There is pain after that, pain that keeps me awake at night, sharp like a knife in my leg, but it's never Nine again. I'm afraid that if I take the medicine, Nine will lurk behind it, waiting for me, and I figure that at least this way, I can have power over it. This way, it can't blindside me. Still, the sixes and sevens give my mom nightmares. Sometimes I try to tell her that they're fours and fives, but she knows me too well, and it's as if she needs to shoulder my burden so badly that she takes it upon herself in her dreams. It's as if I will hurt less if we hurt together. 

The pain that I live with today isn't bad at all in comparison (not even close to Nine...depending on the day, I'd say it's probably a 2 or a 3), but it's a sharp and constant reminder of what I've been through. I feel it whenever I bear weight on my leg, so every step brings pain, and I feel it whenever I lie on my side. I've gotten pretty good at ignoring it, though; I know that the pain is there, but it's almost as though my brain doesn't acknowledge that it is pain anymore. If I knew for sure that removing the pins in my leg would get rid of that pain, I would do it in an instant, but there's a part of me that's afraid that another surgery would cancel out all the progress I've made, or that the pain would still be there afterward.

So my life hasn't been easy lately, and difficult decisions lie ahead, but nobody ever said life would be easy. :) And I know this is a heavy post, so I should mention that there have been many, many bright spots as well, and I'll be sure to write about these soon! I've spent many hours having fun with my friends from college, reunited with my friends from home, bought some polka-dotted socks, did some coloring in an adult coloring book that I received for Christmas, snuggled my dogs, taught a bunch of fifth-graders about neuroscience by allowing them to control my muscles with their mind (so cool!! definitely a topic for a future post! They LOVED it), and read a bunch of books FOR FUN (I'm currently reading 11 22 63 by Stephen King)...and this Friday, I'm planning on spending the day with my mom's newest group of students (also fifth-graders!). Even when things are difficult, there is definitely a lot to smile about. :)

Friday, December 4, 2015

I Need You to Fight for This

In my town, there were three elementary schools, and children were divided amongst them depending upon the area of town they were from, no exceptions....but only one of the three schools was accessible, and it was not the school closest to my house.

"Your daughter is an exception," the people in my town told my parents. "She can attend the accessible school so that she won't have to deal with the stairs."

"No, thank you," my parents said.

The world will not adapt to you, my mom used to remind me. You must adapt to the world.

You will have to deal with a world that wasn't built for you for the rest of your life, so you might as well start now.

Stairs were hard for me. At four years old, the staircase to my bedroom seemed like a mountain. My wobbly legs made it difficult for me to use stairs like a "normal" person, so I dropped to my hands and knees and crawled up. To get down, I sat on the edge of the staircase and used my arms to scoot my bottom down one step at a time.

One morning, my dad declared that I was no longer allowed to go up and down stairs using this method, the only method I knew. His intentions were good, no doubt—he was probably trying to prepare me for the challenge that I would have to navigate at school. But for whatever reason, he wasn't there when I actually had to make it down the steps...and this was a problem. I sat at the top of the staircase in my pink flowered pajamas, and my brother stood next to me, clutching his blanket. I turned to him, perplexed. "How am I s'posed to get down?"

With his thumb in his mouth, he stared down the mountain of steps, considering my situation.

After a moment, his face brightened. He ran down the hallway and returned with a laundry basket.

"Get inside," he said, positioning the basket at the landing of the steps.

I climbed in, my knobby knees pressed up against my chest.
              
He then proceeded to push the basket down the stairs.
              
Adults might have thought he was reckless. 

I thought he was brilliant.
 ~
Today, as a college student, I manage steps without a laundry basket—although I still maintain that my brother's adaptation was a brilliant one, albeit maybe a tiny bit reckless—but staircases still represent somewhat of a challenge.

And that's why my heart dropped when I learned that my college's graduation ceremony is going to involve stairs. Lots and lots of stairs. Cement stairs.

I met with the disability coordinator about this a couple of weeks ago and she said that maybe I should sit it out – not the actual "receiving a diploma" part, but she said that maybe it would be best if I didn't walk with my class during the ceremony. 

I told her that I wanted to think it over, and I have plans to meet with the event coordinator in the near future to go over details...because ohmygoodness it is complicated. I don't know how I'm going to do it, how I'm going to manage this whole ceremony, because honestly? Right now, it sounds like a nightmare.

I mentioned the situation to my mom, lightly, and she dropped what she was doing and turned to look at me.

"That's not fair," she said. "You've worked just as hard for this as your classmates have—harder, even. I need you to fight for this. I need you to fight because you earned the right to walk with your class on your graduation day."

Thinking back to my mom's words – The world will not adapt to you; you must adapt to the world –somehow, sitting out doesn't feel like adapting at all.

The way the event is laid out right now, I just don't think I'd be physically capable of joining my classmates. But after all they have done for me, I think my parents deserve to see me walk with my class. I deserve to walk with my class.

I'm not sure what to do. I'm not sure how to fight for this (ANY ADVICE?!). But I'm going to try.

Thursday, October 22, 2015

Presuming (In)competence

When I was in sixth grade, I received in-school physical therapy when the rest of my peers attended gym class.

"Hel-lo there! How...was...your...week...end?"

The therapist's words were slow and measured, punctuated with several moments of silence between each syllable, and her voice was about two octaves higher than normal. I hated the way she avoided my eyes when she looked at me, staring through me as if I wasn't an actual person. I hated the way she made me strap weights to my ankles and walk through the crowd of my classmates as they participated in gym class, my face burning with humiliation as they watched me. And most of all, I hated the way she spoke to me as if I was half my age.

I endured her with forced politeness for weeks until one day, after I waited through her routine and painfully slow weekend inquiry, the words just bubbled out of me.

"Stop speaking to me like that! I understand what you're saying! Every. Single. Word. You don't need to speak so slowly! My weekend was great, and how was yours?"

That last part sounds polite when I write it here, but unfortunately I couldn't quite manage to keep the sharpness out of my voice, so she just stared at me with her mouth open, completely lost for words. I never went to in-school PT again after that.

I think she saw "cerebral palsy" in my chart and assumed, like so many others, that I was incompetent, incapable of understanding. And it's people like her that have made me hesitant to disclose my cerebral palsy to my teachers and professors.

Recently, I emailed a professor about fundraising walks he was hosting for Alzheimer's disease and autism; as part of his neuroscience class, we were expected to attend these walks. I explained that I had CP so it would be challenging for me to participate in the walks themselves, but I asked if it would be okay if I just donated to the causes, as they meant a lot to me.

His reply was gracious, and at the end of his email, he asked if I would be comfortable meeting with him sometime to discuss my CP in greater detail.

Yes, I wrote back. Of course.

But deep down, I was hesitant. Deep down, I was conflicted. Deep down, I wasn't really sure how I felt about having this conversation.

And then I talked to a friend about it.
"If you don't feel comfortable talking to him about it, then don't. You shouldn't have to talk about anything personal to a professor," she said. "But if you do talk to him about it, make sure he realizes that it's not who you are. It's just a part of you. There's a difference."

~

I don't want my professors to see my crooked legs before they see my potential. I don't want them to dock ten points off--or add ten points to--my essays and exams because I am "that girl with the damaged brain." I want to approach them about my disability but sometimes I'm not sure how.

I am not perfect, I want to say. But neither are you.

I have a disability, I want to say. But I am able.

I am different, I want to say. But so are you.

My disability isn't who I am. It's just a part of me. There's a difference.