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.

Saturday, September 12, 2015

The trip I forgot to update you guys on, leaning on friends, 1am milkshakes, and the little act of kindness that made my day

It's strange to think that when I started this blog nearly three years ago, I was just barely a freshman in college and just barely comfortable writing about my cerebral palsy. I feel as though I am in a much more confident place now, and I owe much of that to YOU guys, my incredible readers and supporters. Thank you for your encouragements throughout all of these years...they mean so much, and it's been such a privilege to have your support as I navigate through my college years!

I feel like I owe you guys an update, and I'm going to make more of an effort to post more often again. First, thank you to everyone who commented on my last post, in which I was trying to decide whether to go on that trip with my friends. I WENT, in large part because of your encouragements...and I'm so glad I did.

I had such an amazing week with them. We spent a couple days shopping around in the nearby tourist town, went on a boat ride, swam in the lake, played card games, watched movies, stayed up late into the night, and visited a historical museum (my favorite part!).

My CP complicated matters a little bit, but it didn't impact the trip nearly as much as I had anticipated...partly because I have such amazing friends! They didn't make fun of my Crocs when we went to the lake ;) (flip flops don't stay on my feet), they matched my pace when we were out walking, and they waited for me when I lagged a little behind. Getting to the lake was a challenge for sure because there was a lot of uneven pavement and TONS OF STAIRS, but it was manageable. In the lake, I just swam in areas that weren't much over my head, and I asked one of my friends to take my hand for balance when we waded through the waves (which was a Big Deal for me...but I shouldn't have been nervous to ask! She took my hand with a smile and it was No Big Deal after all. :) ).

At one point, they wanted to walk out onto a narrow dock that didn't have any rails on the side. I laughed and said something like, "You guys go ahead, but I think I'll just sit on the side of the dock. I can just see myself losing my balance and falling in." One of my friends took my hand just then and said, "Let's just sit here, then. This is the perfect spot." So we sat on the edge of the dock together, and as we watched the sun setting in the sky, I felt so lucky to be surrounded by such amazing people, people who accept me just as I am.

And here at college, I am still surrounded with amazing people. Just the other day, I was walking back from class in a torrential downpour, and I was absolutely SOAKED. I didn't mind too much, because I was so wet that I was past the point of caring (do you ever get to that point? haha), but as I was making my way back to my dorm, I passed a boy walking in the opposite direction with a giant stack of boxes in one arm and an umbrella in the other. A few moments later, he had turned around and was shielding me with his umbrella.

"You live in that dorm over there, right?" he said, gesturing with his armful of packages. "Let me walk you back to your room."

It was such a simple gesture, but his kindness made my day.

Speaking of amazing people, I spent the day yesterday with my incredible cousin, who is just one year older than I am, and who was diagnosed with late-stage brain cancer when she was in eighth grade. After a battle with surgery, chemo, and radiation, she went into remission, and she has been cancer-free for a number of years now. I won't go into details because her story isn't mine to tell, but we had such an awesome day together...and she brought chocolate cookies! :)

And then last night, I went to my first horror movie in theaters with a group of really good friends. We had such an awesome time, and then we went to a rundown old diner at 1 in the morning and ordered milkshakes and enjoyed the fact that it was (finally!) Friday. I know it sounds silly, but I am just getting comfortable enough to ask my friends for help up and down curbs—they helped me with several yesterday and it wasn't awkward at all. :)


I would love to write more (I have so much more to write about!!), but I have hundreds of neuroanatomy terms to memorize (how I wish that was an exaggeration...), so I'd better get to work. I'd love to hear what my readers have been up to, though – it would mean a lot to me if you'd leave a comment! I'll try to make time this week to catch up on the blogs on my sidebar too. I've missed you guys so much, and I will never be able to thank you enough for being such an awesome support system. xoxo

Monday, July 13, 2015

CP and the struggle between being realistic and living life to the fullest...

It was such a good day at the beach—every breath of air was sweet and salty, not like chocolate pretzels sweet and salty but the kind of sweet and salty that you can only find by the ocean...and the water was a little chilly, but not so cold that it ached with every step.

And yet, as I watched the other beachgoers moving so carelessly and effortlessly as they threw themselves at the ocean and bounced through the waves, I couldn't help but ache. I wanted to join them so badly, to run past the shoreline until the waves climbed above my waist, to duck my head under and feel the saltwater sting my eyes. I knew that I could have asked my brother or my parents to take my hand and they would have, but I didn't want to inconvenience them, and so I just pretended that I just wanted to go in up to my ankles anyway.

It all sounds so trivial now, but it's just so hard, especially at this stage in my life. My friends and my brothers are traveling, exploring the world and going on trips and being 21-year-olds and sometimes it feels like all I can do is sit back and watch because of my CP.

A few weeks ago, my two best friends went on a week-long trip to Europe and they asked me to join them. I've never been out of the US before and oh, how I wanted to go with them...but the reality is, with my disability, I can't just make spontaneous plans. I have to consider whether I will be able to manage the airport, my bags, walking long distances...I have to consider whether I will be able to manage the curbs and the steps, and whether my friends have their hearts set on a tourist attraction that wouldn't be practical or possible for me. And so I had to say that I couldn't go, and I blamed it on the fact that I have an internship this summer—which, to be fair, was a major complicating factor and a perfectly valid excuse. But I couldn't help wondering whether I would have been able to go on that trip if my life had turned out differently and I was born without CP.

Now those same friends are planning a road trip in a week or two, and they are begging me to join them. I am sitting here in tears because I don't know what to do...in my heart, I want to go. I don't want my CP to limit me, to hold me back. But I also don't want to hold them back. I know that if I told them this, they would assure me that it wasn't an issue, and for sure they wouldn't leave me out—they're the kind of friends that head for the flattened part of a curb automatically, and they do an amazing job of being sensitive to my needs while also not focusing on my CP. But I want them to be able to hike and swim without reservation, without worrying about whether I can safely join them.

And I have to consider my own personal well-being as well...what if the lake is too deep for me to safely swim? I'm not a bad swimmer but my balance issues mean that I have to be more careful.

Sometimes I just wish I could participate in life as fully and as freely as everyone else seems to be able to, without having to worry about any of these "extras." I'm really struggling with finding that balance between living my life to the fullest without letting CP dictate what I can and cannot do and being realistic and responsible about my limitations.