Tuesday, December 31, 2013

Another Update! (because I can't think of a creative title)

Just a quick update today! I'm sorry I haven't been keeping up with blogging lately...life has been getting in the way. ;-) I had a wonderful Christmas with my cousins, aunts, and uncles, and have been studying for the exams I got extensions on and relaxing with my family and friends!

My cough has still been bothering me, but I think it worries the people around me much more than it worries me. It hasn't been nearly as bad as it was at college because there are far fewer triggers at home, but I woke up gasping for air in the middle of the night on Sunday. I visited my pediatrician yesterday and was told that I either have asthma or a virus that mimics the symptoms of asthma...only time will tell which, but I was given a medication that will supposedly reduce my cough in either case...fingers crossed, because it's been five weeks and I'm STILL dealing with this thing...

Thank you guys for your continued support, and I hope to be posting more regularly soon! Have a great New Year's!

Friday, December 20, 2013

Messages From the Universe

Still trying to get my feet underneath me...Since I last wrote a post, I had a discussion with the head of the Disability Services Office at my college. She knows me well, and I think she's torn between admiration and annoyance because I am very independent; I prefer not to ask for help.

I do make exceptions though. After encouragement from you guys, the health professionals at my campus Health Center, my college friends, and a couple of my professors, I decided that I needed to get extensions on some of my exams so that I could focus more on getting better.

I requested extensions on two of my four exams, and to my surprise, my professors were very accommodating...actually, I got the sense that they were relieved.

On Thursday afternoon (not yesterday; December 12th), I received a nebulizer treatment at the campus Health Center (I just went to pick up my prescriptions but the doctor heard me coughing and refused to let me leave!) and that definitely helped. I've been feeling a lot better since the paramedics incident on the Tuesday before last!

I took my Latin final on Monday afternoon, and I think it went fine, except the cold weather forced me to have to use my inhaler minutes before taking it, so I was a little shaky and jittery when taking it! Such is life...and my other final was just an essay, so it wasn't a huge deal.

I went home Monday night. I've still been having some coughing/breathing problems, mostly at night, but it's awesome to be away from the smoke and perfume that was making everything much worse. I've also enjoyed reuniting with my friends from home...soon after I got back, they showed up on my doorstep with a plate of Christmas cookies and we caught up on life and everything was right in the world.

Still, I'm worried about stressing my parents out. The other night, I was coughing at 3 in the morning as I laid in bed, and my dad got up and stood in the doorway of my room. I pretended that I was asleep but I could feel his eyes on me...I felt the worry in the air, and I tried to stifle my coughs for the rest of the night.

I think that's about it for now...but I'll leave you with this fortune that I received from a fortune cookie on the way home. Perhaps I received a bit of advice from the universe? ;-) I thought it was spot-on!

It reads: "You need a new environment. Go on vacation."



Wednesday, December 11, 2013

Another Update

Thank you so much for all of your support and for your encouraging comments. It is such a wonderful feeling to know that so many people care about me, and I wish there was some better way to convey my gratitude because words seem so inadequate right now. And to those of you who reached out to me through email when I was desperate and trying not to cry and feeling hopelessly, hopelessly lost? Thank you. Thank you. Thank you.

I went to the health center again today and the nurse practitioner thinks that yesterday's episode might have something to do with the fact that I didn't take my steroids last night (completely slipped my mind!). So I got more steroids to take, and tomorrow I'm going back for two more inhalers.

I hate taking all this medicine because it makes me jittery but I guess it's worth it because breathing is nice. The stress of exams probably isn't helping either, but the underlying cause is definitely not psychological because otherwise the albuterol inhaler and steroids would make my symptoms way worse, rather than relieving them. 

I'm going to try to stay on top of the steroids and inhaler stuff and I hope this all goes away soon because I just feel like I can't deal with it right now. I'm still terrified that it's going to happen again, and what if I'm alone this time? What if it happens when I don't have a friend nearby to call campus safety, and I can't use my hands to use my inhaler?

I have three exams and a paper that need to be done by Tuesday, I am ridiculously sleep-deprived by all of the medicine (averaging maybe four hours of sleep?), and to top it all off, there's ice and snow everywhere, so walking around campus is like traversing an obstacle course...I was really looking forward to this time of year but it's been a nightmare so far. I was told that I can get an extension on my exams if needed, as many of you suggested in the comments...I can't even think about that right now, though.

I hate all of this drama. I hate that an ambulance had to come last night. I hate that I had to sit in the middle of the hallway trying to get air in my lungs with an oxygen mask on my face and everyone staring. I wish I could wake up tomorrow morning to find that these past three weeks have all been a dream.

On the bright side, thanks to the steroids I feel fine right now. Fingers crossed that it sticks and that I can avoid gasping for air in the hallway surrounded by paramedics tonight...

And I called my mom. I told her everything. She's scared. But I feel like I can breathe easier (no pun intended) knowing that she knows. And her support is amazing, too. I want to see if I can stay here for a little longer, but just knowing that she would come and pick me up in heartbeat if I needed her to is comforting.

And thank you guys again for everything. Your comments and encouragement mean the world to me. xoxoxo

Tuesday, December 10, 2013

Just want to break down and cry....

It happened again tonight. I was doing work and chatting with a friend on Facebook when I felt a crushing tightness in my chest and I suddenly couldn't breathe. I panicked, grabbed my inhaler and a water bottle, and left my room.

I didn't make it twenty feet before I collapsed against the wall in the hallway. One of my friends heard me gasping for air and he rushed out of his room and called campus safety right away.

Writing about it now I just feel like crying because not being able to breathe is just about the scariest feeling in the world. I felt like I was dying, could hardly sit up...used my inhaler which helped a little bit but then my hands tightened up from a lack of of carbon dioxide in my blood, so I couldn't use it again.

All the while I felt like my chest was being crushed...no matter how much air I tried to get into my lungs, it didn't seem to be working.

The campus safety officer called the paramedics and they gave me an oxygen mask. They wanted me to go to the hospital because my heart-rate and blood pressure were really high, and my breathing had improved a little but it was still labored.

I didn't want to cause drama though, and after about fifteen minutes of the oxygen mask and three more uses of my inhaler, I felt like I could breathe again.

All of this happened about two hours ago and I'm afraid to tell my mom again. I will tell her...but I just can't bear to tell her now.

And yet I'm scared that it will happen again, out of the blue like it did tonight. What if my friend hadn't heard me, hadn't come out into the hallway? What would have happened if I was out there alone?

I went to the health center this morning and got some more steroids to take...they help tremendously, but what if they don't do enough? The nurse practitioner I saw thought that this whole thing might have something to do with my lungs...and lungs are kind of necessary for life. I'm scared and I don't know how to handle this.

And I still have a lab report to write that's due tomorrow, and final exams start on Friday. I just want to break down and cry. I wish everything could be easier again, wish I didn't have to go through this. I'm scared, so scared, and I feel so alone right now and so overwhelmed about everything.

I'm trying to keep it together but I feel like the world is crashing down around me and there's nothing I can do.

Monday, December 9, 2013

An Update: Because I Owe You Guys. Huge.

When I published my last post, I was feeling lost. Conflicted. Scared. Usually if I need advice on something, I turn to my mom...but this time I couldn't. This time I was scared for her, scared I'd hurt her. And I was afraid, even, to press "publish" on that post. But I am so glad that I did.

Thank you all for your words, each and every one of you. For your support, for your advice, for your emails...for reaching out even though you didn't have to. I don't have time yet to respond to all of them, but I read each response multiple times, and words cannot describe how much they meant to me.

Before I continue, I think I ought to catch you up to speed on what's happened since I wrote that post. I'm so sick of this drama. Sunday night marked the fourth night in a row that I was forced to leave my room in search of some fresh air to breathe. And friends? You're going to sigh at me...I know I shouldn't have done this...but I went alone. My best friend, who also happens to live next door, had fallen asleep early and I couldn't bring myself to wake her. My independent streak has been so helpful when it comes to dealing with my cerebral palsy, but it also can be dangerous in situations like these.

I know I shouldn't have gone alone. I think someone might have called a campus safety officer to help me, though (at this point, I think I have met, like, seven of them? Maybe eight?), because after I had been trying to catch my breath for fifteen minutes, an officer appeared out of nowhere and stayed with me until my breathing was regular again. At this point, it was about one in the morning, and I had used my inhaler twice, so I had the shakes, and I had to get up at 6:30 for a chemistry test the next morning!!

I laid in bed until about three in the morning before the shaking stopped enough for me to fall asleep. And then, to top it all off? When my alarm went off, I looked out the window and it was hailing, and a sheet of ice coated the ground. Campus delayed classes until about 10am, but I got a message from my chemistry professor stating that our exam was still happening at 7:30.

So, still coughing, running on about three and a half hours of sleep, I pulled on some clothes and boots. My friend was begging me to skip my exam; "Chemistry is not worth risking your life for!" she messaged in a final desperate attempt.

I ventured outside anyway, but after a few steps, I realized that she was right. I couldn't physically walk on the icy pavement, and worse still, the cold assaulted my lungs to the point where I could hardly breathe.

So I trudged back inside and emailed my professor, explaining my situation. He agreed to reschedule my test for 2:30...but the drama was only just beginning, friends.

I climbed back into bed and slept until 9:45, at which point I got up and made my way to biology class. On the way to class, though, I was forced to pass by a row of trucks that were pumping out exhaust fumes. At this point I didn't know whether to cry or laugh at the universe....I rushed inside and sat down until I could catch my breath again, and then continued on my way.

For the entire duration of my biology class, though, my breathing never seemed to fully recover. I used my inhaler once in the beginning of class, and that helped, although it didn't fully put a stop to my coughing. At the end of class, though, I reached down for my inhaler and realized that I couldn't find the albuterol part -- the medicine.

My lab instructor realized that I was struggling and rushed down to help.

"Are you okay?" she asked, as I rifled through my backpack in a panic. I shook my head no, breathlessly explaining that I couldn't find part of my inhaler. My professor came over too, and they tried to help me find it to no avail. They took me outside in the hopes that fresh air would help, and it did, a little.

Once I felt a bit better, we went back down and I searched my bag again....jackpot! There it was, the other piece. They sat with me as I inhaled, and then my professor insisted that I go to the campus health center. I was reluctant, but he was right. I probably should have gone even sooner than today, anyway.

He called a campus safety officer to bring me there, and at the health center I was given some steroids to ease my breathing.

My biology professor emailed my chemistry professor explaining what had happened and asking if I could postpone my test further, because the medicine would make me shaky. I ended up taking it anyway, though, shakes and all, because I just wanted to get it out of the way.

And then tonight, my mom messaged me asking about my cough. I paused, considering my options.

"Was it bad over the weekend?" she wrote.

I thought back to your replies urging me to tell her what happened, and I hesitated. But you know what, friends? You were right. She deserves to know. I didn't include every excruciating detail, but I mentioned that I almost passed out on Thursday, and explained that I had trouble on Friday, Saturday, and Sunday too. I told her, too, in great detail, about the incident that occurred most recently.

She was scared, worried, questioning, as I knew she would be. All the same, though, I feel a sense of relief now that she knows.

And tonight, because of the steroid medicine, I feel so much better...who knows? If I'm lucky, maybe I won't have to sit out in the hallway at 12:30am! ;-)

Thank you again for all of your advice; it meant the world to me. Hugs!

Saturday, December 7, 2013

When Vision Goes Black: My Nightmare of a Thursday Night. & Parents: I need some advice please!!

A.K.A. Does the universe hate me? With finals and my breathing troubles, I've been really struggling lately. My incredible friends are the only ones keeping me sane at this point!

Also: I need some advice. The following story is kind of intense and although I eventually told my mom what happened when she pressed me about my cough, I left out major details. When my dad called earlier that evening because I hadn't responded to his messages, I told him that I was totally fine and didn't mention that I had to use my rescue inhaler an hour before. I'm struggling with how much I should tell my parents about this. I feel so guilty that I've put them through so much medically, and I feel like they deserve a break from my medical burdens. I know that if I told them the whole story, they would jump in the car and come get me, and it would consume all of their thoughts. I think it will get better on its own so I'm thinking I'd like to keep this to myself to spare them the worry. I hate being the one that everyone worries about all the time. Hate it. On the other hand, it's kind of unsettling to be keeping things from my parents; I didn't lie to them about what happened, but I omitted the scarier details, so although my parents know everything about what happened two weeks ago, they only know the bare minimum about the other day; my mom just thinks that I have a mild cough now. Anyone have some advice here? Should I tell them everything, or is it okay to sugarcoat the situation a little for the sake of their feelings and sanity?

Anyway, here's what happened. I'd really appreciate if you'd leave a comment with some advice if you have some. :) (Whether you're a parent or not! I'm just trying to put myself in my parents' shoes and decide what would be best for them...)

~

My cough was getting better since my trip to the ER two weeks ago, but then on Tuesday I accidentally inhaled some smoke because a group of people were smoking while I was on my way to class, and everything got worse again.

Thursday evening during dinner, I was coughing so hard that I lost feeling in my hands and my face. My inhaler got my breathing under control and I was completely fine for a few hours.

And then at 11:00, someone decided to throw a party. In the hallway.

That's when I started having trouble breathing again. I opened the door a crack and realized that they had sprayed perfume EVERYWHERE, and that some of it had made its way into my room and was exacerbating my breathing problems.

I shut the door immediately and sent a panicked text message to one of my friends.

"What do I do?!"

Leaving would require me to walk through the hallway full of perfume...but even with my inhaler and a window open, the perfume was making its way into my room.

My cough kept getting worse, so we decided that the best option would be for me to hold my breath and try to leave.

My friend arrived at my door and together we made our way through the hallway, but about halfway through I couldn't hold my breath anymore. Immediately after I inhaled, my cough got worse, and I couldn't get a good breath.

It seemed like we were in that hallway foreverrr, but finally we made it to a spot outside my dorm with clean air. By that point, I had lost all feeling in my hands, and I couldn't breathe out enough to effectively use my inhaler.

My friend called campus safety for help, and as we were waiting for them to arrive, I began to lose my hearing and my vision, I could no longer feel my legs and feet, and my hands clenched and completely stopped working; no matter how hard I tried, I couldn't get them to move.

I was so scared...shaking, gasping for breath, barely able to see or hear and unable to use my hands. I felt completely and utterly powerless.

According to my friend, some of the people from the party saw me struggling to breathe and they laughed. They laughed, and amidst their laughter they asked if I was having a panic attack and then left. 

I don't understand what kind of person laughs when someone is having trouble breathing.

"It took every ounce of my self-control to restrain myself from decking them in the face," my friend said later.

Vaguely I heard a voice next to me, someone I recognized, telling me that it was going to be okay...Then the campus safety officers arrived along with an EMT, and I think they were asking me questions but I couldn't make out the words. I remember insisting that I didn't want to go to the hospital, didn't want to go through that again. The whole world seemed still at this point...I think the whole situation only lasted maybe twenty minutes to a half hour, but it felt like days...

And then my breathing began to come more easily again...with deep, shuddering breaths, my vision began to focus again and my hearing was coming back. It took a while before I could move my hands again and about a half hour before I regained full feeling in my arms and legs, but in the meantime, the oxygen felt amazing as it filled my lungs with each grateful breath.

The room spun for a while, and I felt as though the bench I was sitting on was moving...apparently this was a side-effect of the oxygen deprivation, as was my pounding headache.

By the time I got back to my room, it was 1am, and I was shaky and wide awake because of the medicine from my inhaler. When I finally fell asleep at 2:30am, I closed my eyes and took a moment to be thankful: thankful that I could breathe again, thankful that this nightmare was over.

Since then, I've still been having some trouble, but it hasn't been nearly as bad as Thursday night.

Again, if anyone has any advice, I'd really appreciate it if you'd comment! I feel really bad that I've put my parents through so much already in life...but is it irresponsible of me not to tell them the full story?

Friday, December 6, 2013

Six Years Ago Today:
Don't Let Them Break You
(The Day That Changed Everything: Part 5)

Six years ago today, I fell and my life was forever changed. It's hard for me to open up about, but I have been writing, slowly and surely...

(Part 1, Part 2, Part 3, Part 4)

If I could sit down and talk with the almost-fourteen-year-old me from six years ago, I would tell her...

You are strong. Stronger than you know. You can do this, and you will do this. You will walk again. It will be hard; you will cry, you will question everything, you will feel inadequate...You have permission to be angry at the world for a little while; you can cry about the unfairness of it all and punch the life out of some pillows, but never give up. You will come out of this experience as a stronger person.

Don't listen to the person who doesn't understand. He will shout in your face that you are lazy, a failure...he will tell you that you should be "running a marathon right now" instead of struggling to walk with crutches, and these words will break your soul, knock the wind out of your chest. Understand that he says these things because he cares about you but he doesn't realize that he's tearing you down...he doesn't feel the sharp pain that rips through your leg when you try to take a single step, doesn't realize that a trip across the kitchen feels like a marathon in itself. Wipe your tears and know that you are far from a failure, and when you are collapsing to your knees from exhaustion, remember that you are the antonym of lazy.  
Don't let his words break you.

And that doctor on the other end of the spectrum, who says that you'll probably never get rid of your crutches and will need a wheelchair for long distances? You. Will. Prove. Him. Wrong. One day you will stroll into his office all on your own, without crutches or anything at all. He will stare at you with shocked eyes, drop his pen, and he will assume that he got the wrong patient. 

He will watch you defy his expectations before his eyes.

Is that really the girl with CP who broke her femur? he will murmur to his secretary as you rise from the chair in the waiting room.  

He will shake his head in disbelief as you stroll down the hallway
He will be lost for words.

And you will smile because you always knew you could do it. You always knew that you would walk again.

So, fourteen-year-old me, wipe your tears, keep your chin up, and believe in yourself.

Don't let their words break you.

You got this.

Sunday, November 24, 2013

Friday Night in the Emergency Room and the Nurse Who Made an Idiot of Herself in Thirty Seconds

On Thursday night, I started coughing. It wasn't a big deal at first...I drank some water, took some deep breaths, and waited for it to subside.

Thirty minutes later and I was on the floor, desperately trying to catch my breath and still coughing uncontrollably. My whole body was shaking...I couldn't stand up, and I couldn't get my hands to move.

After a few minutes of trying to catch my breath and half a bottle of water, I was a little better...still shaky, but my hands could move again and I was able to get up when someone knocked on my door.

A student from the floor above me whom I don't know had heard me coughing and was concerned. I tend to underplay situations, though, so I thanked him and told him I was fine...he left reluctantly. I assumed it was just a cold of some sort, and it would go away on its own.

I slept about four hours that night because I was coughing so hard that it was difficult to sleep. In the morning, I got up at 7 a.m. for my chemistry class, which I had considered missing, but the coughing was better, so I threw on a sweatshirt and toughed it out.

The morning wasn't so bad, but by the afternoon, my cough had come back with a vengeance. I laid in bed from 1 p.m. until 6 p.m., unable to sleep even though I was physically and emotionally exhausted.

And then after dinner, it got even worse...I was having some trouble breathing, so at 9:30, I grabbed my coat and room key and decided to go outside to get some fresh air.

I was floored by the amount of people, many who were strangers, who stopped to see if I was alright. I insisted I was. After about thirty minutes of trying to catch my breath on the sidewalk outside of my dorm, a group of my friends happened to pass by, and they were concerned.

Despite my insistence that I was okay, they refused to leave, and one of them called Campus Safety. By the time the Campus Safety officers arrived, I was having trouble speaking because I was trying to catch my breath. I could inhale reasonably well, but my breath kept catching when I tried to exhale.

One of my friends went with me to the ER. Once we arrived, a nurse escorted me into a room, and OMG. This nurse could have written a guidebook entitled, "How to Make an Idiot of Yourself in Thirty Seconds."

She saw the way I walked and immediately assumed that I was drunk. I was nothing but polite when answering her questions, but her tone of voice was biting and irritated.

"Sit down," she said flatly. "Have you been drinking?"

I told her no, and she snapped at me to speak up. It takes a lot to get me angry, but I COULD HARDLY FREAKING BREATHE...how did she expect me to speak up?

And then another nurse came in to take my medical history. I told her that I have cerebral palsy. And OMG. If I wasn't trying to breathe, I think I would have laughed forever at the expression of horror on the face of the nurse who had assumed I was drunk. She immediately warmed up to me after that, but she was clearly mortified for treating me rudely because of a medical condition that I couldn't control!

Then the doctor came in, checked my breathing, and was immediately thrown into a panic because my breaths were catching and I couldn't cough normally. I was given a steroid shot and a breathing treatment. The first breathing treatment didn't work, so I was given another one that helped tremendously...and my friend and I laughed about how the treatments made me sound like Darth Vader, haha. :-)

I was in the ER until about 12:45 a.m. (about two hours) because the steroid shot made my heart rate shoot up, and the doctor refused to let me leave until my breathing was smooth. They don't know exactly what happened, but my breathing problems were either due to some sort of inflammation in my throat, or because of a virus that just causes a cough (which normally wouldn't be an issue, but because of the lung problems I had as a baby, it may have caused me to have trouble breathing).

I slept about two hours that night because the steroid shot made me jittery, but I got about 14-15 hours of sleep last night to make up for it, and had only a few coughing episodes through the night!

I still have a cough, but it's getting better, and I have an inhaler and some medicine until I can breathe well again! This wasn't exactly how I wanted to spend my Friday night, but it made me realize how many amazing friends I have. I am so, so grateful for the friends who refused to leave my side and who called for help, for the friend who accompanied me to the E.R. at 10:30 p.m., for the friend who picked us up at 12:45 a.m....

I have so much to be thankful for this Thanksgiving!

Thursday, November 21, 2013

The Obstacle Course

I was eight years old,
my heart pounding in my chest
as I faced the obstacle course in front of me,
a physical representation of my life.

 The other children in the karate class sat
with their backs pressed against the wall,
watching intently.

Will they laugh? Please God, don't let them laugh at me.

 I took one shaky step, numb with worry, and began to work my way through the course, afraid to glance at the children against the wall, afraid that their faces would be painted with judgment.

Shame settled in my stomach when the instructor lifted me over one of the obstacles because my eight-year-old legs were unable to jump.

That's when I heard them. It was a low murmur at first, a gentle whisper...

The other children...
they were chanting my name.
 They were cheering for me.
 All of them.

The dread gave way to pride as the murmurs became shouts, a chorus of children's voices chanting my name over and over again.

My steps were still stumbling, my gait still shaky, but somehow none of that mattered anymore.

I saw no judgment in their faces, no laughter; only smiles.

To this day, I am grateful to those children who cheered for me, week after week and year after year. They got me through countless obstacle courses.

I haven't seen most of them since middle school, but I hold their encouragement within me, turn to it when I feel unable to navigate the obstacle course that is my life. They have no idea how much their cheering meant to me.

And I just want to say thank you to you, my readers, for your encouragement. I'm not sure what I expected when I started a blog, but it wasn't this. I never expected to meet so many incredible individuals, people who boost my spirits when I'm down and cheer for me when I'm afraid. I never dreamed that I would find such an amazing community of people.

Thank you for reminding me that our world is a beautiful place to call home.

Saturday, November 16, 2013

Is it Thanksgiving Yet?

I want food. And sleep. And maybe some free time would be nice, but that might be too much to ask for.

I'm sorry I've been M.I.A. for the past week or so, but I've had one of those ridiculously busy weeks. Friday evenings are usually my day to relax and watch a movie with friends...

Last night didn't quite live up to that ideal.

I was lying on the floor of my dorm room surrounded by textbooks, trying to understand some biology concepts for my exam on Monday and questioning the meaning of life. ;-) It was 1:00 a.m.

Earlier this week, I was sitting in class when I realized that it was 4 p.m. and all I had eaten all day was half of a snack-size bag of popcorn...because the popcorn bag had exploded all over my lap five minutes before I had to leave for class.

The next day, I had to take a chemistry exam, and I thought it went well until I proceeded to think about my answers for hours afterwards, wondering if what I had written was accurate.

I just keep telling myself that there's just a little more than a week before Thanksgiving break...until then, I'll be in my dorm room with the remainder of my chocolate stash and my mountain of work!

Thursday, November 7, 2013

Fallen

I feel your stares...they burn like fire on my back. I hear your unspoken questions as you watch me walk. They sting, but not as much as the questions that make it to your lips and float across the air like an arrow.

"What's wrong with her?"

I caught that. I heard you. I hide my face so you can't see the hurt.

Nothing. Nothing is wrong with me. I am perfect in all of my imperfections. At least that is what I try to tell myself as I walk away from you, alone in the silence that pounds in my ears, suffocated by the pain of being different, of being an outsider. The words you dared to speak aloud echo in my head, catch in my throat...What is wrong with her? What is wrong with her? What is wrong with her? What is wrong with me?

I am walking, and my legs give out suddenly...I collapse in a heap on the floor. You wait until you think you are out of earshot, and I know you didn't mean for me to hear, but I hear you anyway....I hear you laughing and it aches a thousand times more than the fall...

"What was that?" you say, your laughter pummeling me as I scramble to get up.

You see me as broken, pathetic, damaged goods....You left as soon as you saw me fall...you didn't stay to offer a hand, didn't take the time to look at me for who I really am. You didn't stay to watch me brush myself off and pull myself to my feet again. If you had stayed, you would have seen...you would have seen that I am so much more than my clumsy steps, and I am so much more because of my clumsy steps.

I went home that day and wrote in my journal, in big scrawling letters across the page:
I hate that I fall so often.
 
Underneath that, I wrote,
I love that I always get up. 

And really, that is one of the most valuable lessons that my CP has taught me: it's okay to fall. Everybody falls.

Life isn't about how many times we fall . . . it's about how many times we get up.

Tuesday, October 29, 2013

The Secret

Sometimes I feel like everyone else is in on some secret that I never got to hear. I watch small children jump and run with blissful ease, their limber bodies receiving perfect instructions from their brains, tiny whispers that never even register in their ears.

I remember telling a small boy once that I have trouble walking because my legs don't receive the right instructions.
"Well, can I teach you?" he asked with gentle innocence. "I know how."

Sometimes I wish it was that easy. Sometimes I wish I could just learn, that someone would just let me in on this secret.

And I've tried. I've tried to "just learn." One time I came from school and stood in front of a mirror. I figured that if I could teach my brain how to spell words and add numbers and find places on a map, then I could teach my legs how to walk normally. But the image I had in my head didn't match the reflection in the mirror. I knew exactly how my legs were supposed to move...I could visualize the steps and replicate them perfectly in my mind, but my legs failed me.

When I look down at my legs as I walk, they don't look different to me. This is my normal.

But when I look in the mirror, I see the clumsiness. I see knees that bend and knock together, and uneven, awkward steps. I look away.

~

"Stop knocking your knees together when you walk," my mom said.
I can't, I said. I can't. 
"Yes you can. It's easy. Just turn your knees out and don't let them touch."
I can't. I'm trying, but I can't.
"Like this," she said.
 I'm trying. 
"It's not hard! Just push your knees out!"
 When I try, nothing happens.

Frustration. Tears. She didn't understand what I was saying, didn't understand why my knees wouldn't cooperate. I didn't understand either, didn't understand why it was all supposed to be easy but it wasn't easy, wasn't easy at all.

That's the most frustrating feeling in the world, when I'm trying to do something and I hate my legs for not being able to do it, hate that willpower isn't always enough.

And yet there is also something so poetic, so beautiful about having a disability...shortly before I was due to head off to college, I was working in the gym with a personal trainer. We'd been working together for years, and she is amazing. For months and months I had been trying to push my knees outward...she would press her hand against my leg and hold it out, but as soon as she'd let go, my leg would collapse right back to the center no matter how hard I concentrated.

And then one day when she let go, my leg stayed in place. It didn't collapse.

The two of us stared in shocked silence for a moment before she spoke, wiping tears from her eyes.  

"You did it."

As I've developed this blog, I've come to realize that much of my life is about finding beauty in the brokenness...and there is so much beauty to be found, so much grace that comes from my ungraceful legs. I will never have a flawless gait, will never have perfect steps, but not knowing this "secret" has taught me so much...cerebral palsy can be frustrating and demoralizing and crushing, but it is also an amazing source of inspiration that I can draw upon, something that has shown me that, above all, my abilities far outnumber my disabilities.

Wednesday, October 16, 2013

Tears in a Bowl of Cereal

I feel like I owe my wonderful readers an update, but my life has been consumed by schoolwork lately and I just don't have time to gather my thoughts enough to write something coherent! Today was just one of those days where my alarm clock went off at 7:12 and I laid in bed wondering if there was a way to pause time so I could go back to sleep....sigh.

And then, on the way to class, my foot caught a rough patch on the pavement and down I went, heavy backpack and all. I pulled myself up and continued on my way...luckily I just got a little bit of a scraped elbow...I was bitter about it for a moment, but then I just thought about what I've been through, about what could have happened, and by the time I sat down for class, I was grateful. Because I remembered. I remembered what it was like to fall and to be unable to get back up...

{stream of consciousness post today}

 When I was fourteen years old I cried over a bowl of cereal.
Had a stranger walked into the room at that moment,
perhaps he would have judged me...
but he wouldn't have known about my broken leg 
that was so much more than a broken leg.
It was a broken leg that threatened to steal away my independence,
a broken leg that turned every step into a mountain climb
of pain and tears and I don't know if I can do this...
a broken leg that became, "you might never walk independently again."
Fifteen minutes.
It took fifteen minutes to carry that bowl across the kitchen,
hands shaking and droplets of milk spilling onto the floor,
legs threatening to give out,
and maybe if a stranger had walked into the room,
he would have laughed,
laughed at the fourteen-year-old girl and her shaking bowl of cereal.

But to me, it was so much more than that,
so much more than a shaking bowl of cereal.
It was proof,
proof that maybe, just maybe,
I could transcend my cerebral palsy,
and maybe everything wouldn't be fixed,
but I could live with the brokenness,
the beautiful brokenness
that ended with a fourteen-year-old girl
crying tears of joy
over a bowl of cereal.

Thursday, October 10, 2013

Gratitude

"You always have a smile on your face," she said.
Thank you. I have so much to smile about, I replied.
"That's the spirit," she said as she met my gaze, but there was sadness in her eyes.

 I don't quite understand why so many people assume that I must be bitter about life. I am thankful every day for the amazing opportunities that I have been blessed with.
 
A few months ago, someone posted something as a Facebook status that has been haunting me.
"People say that everything happens for a reason. HA. Ask a paraplegic person and I bet they won't agree."

Maybe, I wanted to say. But how do you know? Regardless of your own beliefs, this implies that you believe that nothing good can come from that disability. I don't have a problem with people who believe in pure coincidences. I do have a problem, however, with those who think that no one could possibly be grateful for life's challenges, those who assume that, unequivocally, no one with a significant physical disability would ever believe that everything happens for a reason.

Regardless of whether my cerebral palsy happened "for a reason," I really do have so much to be grateful for.

It feels strange that I'll never meet them, these people who allowed me to experience the world. I wouldn't recognize their faces in a crowd, the faces of the doctors and nurses who kept me alive. Do they have families, children of their own? How many other lives have they saved?

These doctors, these nurses, these individuals who worked tirelessly to develop lifesaving medical technology...they're heroes. They gave me a gift that I can never fully reciprocate, a gift far too precious to be boxed up and tied with a ribbon. They gave me the gift of life. Without medical intervention, I probably wouldn't be here.

I would never have experienced sunshine streaming through the window in the morning, a gentle spring breeze, a crackling fire. I wouldn't know what it is like to be covered in sloppy dog kisses, or to be cozy in bed on a chilly autumn's morning.

I inhale and fill my lungs with oxygen, fill my lungs with gratitude for the surfactant and all of the medical equipment that sustained my life even when I couldn't breathe on my own.

I unwrap a piece of chocolate, savor the sweetness as it melts on my tongue. The chocolate melts, but the gratitude does not...there's another kind of sweetness deep inside me as I think of the feeding tube that nourished me when I was unable to eat due to digestive issues.

I am so overwhelmingly grateful to have been given this amazing gift of life. I am so glad that I have the opportunity to interact with such incredible individuals, both outside and within the blogosphere. The world really is a beautiful place.

I have so much to smile about.

Friday, October 4, 2013

Bleeding

This post was something I wrote a while ago, but I've been so busy lately that I haven't had time to sit down and write something new this week!
~

The blood gushes down my ankle and I can't get it to stop and my thoughts are the color of panic and humiliation and oh God make it stop...please, please, please make it stop.

"I'm sorry," I murmur to my friend who is sitting across from me with concern painted all over her face. And it sucks because today we were just supposed to have sundaes and talk about life and relax before the start of another school week.

"Don't apologize," she says as she passes me another napkin to blot the cut on my leg. "Are you sure you're okay?"

And then I have to explain about the sort-of-not-really hemophilia, the mild factor deficiency in my blood that is so, so easy to forget about, until....until a simple cut that I received hours and hours before suddenly starts bleeding again, all over the floor of the dining hall and I'm trying to hold a normal conversation but for the love of God I just can't because I'm trying to stop the blood from ruining my sock, my shoe, the dining hall floor.

I'm bent to one side as I press the napkin against my leg and my ice cream is a melted mess just like this mess of a day and I'm not even hungry anymore because in that moment all I want is a normal life, a life where I can run with my friends without battling stiffness and balance issues, a life where I can eat an ice cream sundae without worrying about a clot breaking and bleeding everywhere. 

"I think I'm fine now," I say after holding the napkin to my leg for what seems like an eternity. I stand up and then, after about twenty steps, I realize that it's started again, a steady stream of blood dripping down my leg.

"Maybe we should get help," my friend suggests nervously, as I sigh and lean down to press another napkin to my leg. "Do you want me to get help?"

No no no no no. The last thing I need is an audience. I shake my head and try to laugh it off, but I can't stop yearning for normalcy.

As I sit on a bench with the napkin pressed against my leg, I murmur in a moment of weakness, "I hate this. I hate that my life has to be like this."

I guess we all have those moments where we're on the verge of tears, trying desperately to staunch the bleeding that just won't stop and wishing that somehow things could be easier. In my case, this moment was quite literal, but if there's one thing I am consistently learning through this blog, it is that I am not alone.

We all bleed. 

Thursday, September 26, 2013

Why I Take the Stairs


When I was two years old, I was given a walker. I was never supposed to be able to walk without one, according to my physical therapist.

Except I did.

I threw that walker down, outright refusing to use it. I couldn't stand still without collapsing, without my knees buckling, but I was determined. With a lot of persistence and a fair amount of M&M's, I learned how to manipulate my wobbly legs. And never again did I touch that walker.

"Can-Do Girl"...that's what my parents called me, because when I was asked if I needed help, I usually replied, "I can do it."

I am still that girl in college. Sometimes I wonder if I am independent to a fault; I struggle to find the balance between being as independent as possible and asking for help when I need it.

Several times already, some of the boys on campus whom I don't even know have offered to carry my backpack.

"I'm all set, thanks, but thank you for the offer; I really appreciate that," I say, and I am unaware of the words tumbling out of my mouth, the refusal that came before I fully processed the offer. I can't even remember the last time I accepted help.

And then there are the people who see me about to use a staircase, and their faces turn to panic as they try to direct me to an elevator.

"I am all set, but thank you," I say again, feeling like a broken record. "I always take the stairs."

And the panic turns to confusion, then surprise.

One of my professors wondered yesterday why I walk all the way across campus to my class.

Can't you just get a ride? she asked.

Yes. But cerebral palsy has taught me that the easy way out is very rarely the best way; we never know what we'll be able to accomplish when we push our abilities to the limit...I can walk. I can manage my backpack. I can climb three flights of stairs. If I can do it, I will.

Just because there's an elevator doesn't mean we have to use it. I am no longer a wispy-haired two-year-old throwing down a walker, but my spirit is every bit as fierce.

I've been told that I can't. I've had my knees collapse out from under me with no warning. I've experienced the frustration that comes from having a brain that can't always tell my body what I want it to do. I know what it is like to struggle with every step. I know what it is like to feel broken.

I know what it is like, so I don't take my abilities for granted.

That is why I take the stairs.

Tuesday, September 17, 2013

The Little Girl

I thought I'd start at the beginning today...

Once there was a little girl who had cerebral palsy. She came home from school one day in tears..."The other kids stare at me, mom," she said.

"They are staring at your strength," her mom said.

And the little girl believed her mom. The next time somebody stared, she smiled. She knew. She knew they were staring at her strength.

And whenever she fell, she remembered the the words of her dad.
"You can do anything that anyone else can do," he said. "It just takes you longer and you'll have to try harder."

She carried those words with her everywhere, knowing that she could do anything...the strength of her spirit could overcome the weakness of her legs.

When the little girl was six years old, she met a little boy. The little boy had ADHD, so his brain worked differently too. But just like the little girl, he was perfect just the way he was.

The little girl and the little boy became friends. When the little girl would fall and scrape her elbows during recess, the little boy would wipe her tears, take her hand and walk her to the nurse. And when the other children ran around outside, the little boy sat with the little girl and together they imagined a world where animals talked....different was okay in this world.

Once, another child said something mean to the little girl about her wobbly legs. She was about to dissolve into tears until she saw the little boy come up behind her. He stood up for her. 

And in gym class, when the little girl couldn't participate because of her wobbly legs, he sat out too, and they played together.

Sometimes the little boy had trouble spelling words and doing math because the letters and numbers would get all mixed up in his head. So the little girl sat with him and showed him how.

One day, the teacher's aide scolded her. "He is slowing you down," the aide said. "Don't help him anymore."

But the little girl knew. He waited for her on the playground, and she waited for him in the classroom. They helped each other. So, in whispers, she continued to teach him how to use his numbers and letters.

The little boy and the little girl were in the same class for five years...for five years, he helped her on the playground and she helped him in the classroom.

Today, the little boy and the little girl aren't so little anymore, but they are still friends. And the little girl who isn't so little anymore will never forget the words of her parents and the kindness of the little boy....she always carries these gifts with her and looks to them whenever she feels lost.

When people stare, she remembers her mother's wordsthey are staring at your strengthand she stands a little straighter. When she feels like she can't do something, she remembers her father's wordsyou can do anythingand she tries again. And when she feels alone, she remembers the little boy who took her hand when she fell, the little boy who kept her company and who was there to stand up for her when she needed him.

All she has to do is remember, and suddenly the world is beautiful again.

Friday, September 13, 2013

Where do I go from here?

I'm a planner. I've always been a planner. I like to know what I'm fighting for, what I'm working towards. I don't like unknowns.

And I still don't know what I want to do with my life.

I'm intending to major in Behavioral Neuroscience (undeclared at the moment), and eventually I would love to do something related to healthcare, especially if this something involves people with special needs.

Last summer I shadowed a pediatric occupational therapist, and I am seriously considering this as a potential career...it bridges my passion for people with special needs, my fascination with physiology, and my desire to have a positive impact on the world.

But then the doubt creeps in...what if I can't handle the physical aspects of OT, like standing for prolonged periods of time? Or, worse, what if people judge me by my gait, and assume that I am not capable of performing my job?

I'm trying to make sense of my feelings....on one hand, I feel doubtful and afraid and lost. On the other hand, I know that I can transcend my CP. I know that no matter what I decide to pursue, the insight that my disability has brought me will be with me always. No one can take that away from me.

And if you're reading this and thinking, "What a mess of a post!," I know. It's Friday night and it has been a long, long week. I'm not even trying to make this into something coherent; I'll probably read it tomorrow morning and wonder if someone spiked the water in the dining hall! ;-) (Sorry in advance for any typos!)

But I needed to write something. I needed to untangle some of the thoughts that have been turning in my mind. And after last week's post, I felt like I owed you guys a little something more. I'm okay. I'm more than okay. College is exhausting and demanding and stressful, but it's also filled with ice cream sundaes and weekend movie nights and friends who slip hilarious notes under the door.

So that's about it for now. There are so many unknowns in my life right now and that scares me but there's also something inherently awesome about having choices. I don't know where I'm going to end up, but I'm going to try to push aside self-doubt and enjoy the journey as much as I can.

Tuesday, September 3, 2013

Trying to Stay Strong

School started up again about a week ago, but I feel like I've been here for an eternity. There is so much I love about college...my friends are beyond amazing, my classes are challenging, and I do enjoy having some independence.

But I'm not going to lie; it's tough. I feel like so many people see the way I stumble over my own feet, see the exhaustion in my face, see me struggling to make my way through a crowd, and they assume that I'm weak.

Why do people assume that people with disabilities are weak?

I feel like it takes so much strength to get through just one day. I have to navigate a world that wasn't built for me, a world of curbs and endless staircases and hills, and sometimes I wonder if I'm strong enough. I find myself rushing to class, breathless, yet I am slower than even the people walking at a leisurely pace. And then, sometimes after I've finally arrived, all of the seats have been taken and everyone stares and my feet ache terribly and I'm left standing in the back with shaking legs, wondering if my knees will give out.

And sometimes I wonder, too, if my spirit will give out. I had a particularly challenging day today, and I was walking to class today in a torrential downpour. My determination was warring with my burning legs, my shoes and socks were soaked, and I just kept telling myself, "One more step, one more step..."

That's my life right now...one more step, one more step, one more step. But each step is physically and emotionally draining. Nearly in tears, I messaged my mom...I don't know if I can do this.

"This is the story of your life," my mom wrote back, "And you always rise to the occasion."

So for now I'm just looking for that strength in my spirit to make up for the weakness in my legs. I feel like I'm falling, falling, falling, trying to accomplish the impossible. I know that I can do this...paradoxically, disability has shown me that we as human beings are capable of so, so much...I just need to find that strength.

Monday, August 26, 2013

Sometimes I Feel Inauthentic...

Let me start by saying that it is such a privilege to blog for you guys and I am so flattered that anyone even thinks that what I have to write is worth reading. Because, well, time is a finite thing and to think that you guys are willing to spend a few minutes reading my blog...that is so humbling, friends. So, so humbling. I want to reach out to each and every one of my readers and say thank you from the bottom of my heart.

But sometimes I feel that this blog only shows a tiny little part of who I am as a person. Most of this post is stream-of-consciousness, but when I write other pieces, I tend to read them over, edit, cut things, add things...and the result is still something from my heart, but dare I say that it's an idealized part of me?

Everything that I write on here is true and I try to be as authentic as possible, but for better or for worse, I am so much more than this blog. Most of these posts are about cerebral palsy or disability in general, about dealing with medical-y stuff and and coping with/embracing a part of myself that many people might consider to be a flaw or a tragedy. And I love that. I love sharing a part of myself that I sometimes feel the need to hide or guard when I'm not around people who "get" me. I am passionate about disability and treating others with the kindness and respect that they deserve regardless of special needs.

But I don't want to mislead anyone. In many ways I am just a teenager. I act ridiculous with my friends...we throw glitter at each other, laugh ourselves breathless, and make macaroni and cheese that has waaay too much cheese...we write poetry at midnight on a Saturday and romanticize goldfish and celebrate Christmas in July. Sometimes I argue with my parents and brothers about stupid things, sometimes I slam my door and sometimes I whine about my life and sometimes I wish I didn't have cerebral palsy at all. And for the purposes of full disclosure, it is 1:00 in the morning as I am writing this post, and my mom asked me to go to bed at a decent hour...but then the words started tumbling out and so there you have it: Simply by writing this post, I am disobeying a direct order from my mom.

And I feel like the people I know outside of blogging see one side of me, and you guys, my readers...you see another side. Both sides are a part of who I am, but I guess I just want to remind you that that other side exists. Cerebral palsy has very much shaped me as a person, but most of my friends from outside of the blogging world (I'm hesitant to refer to these people as "real life" friends because I think of this as real life too) don't really think about me in terms of my disability. Last year, for instance, my roommate said that she'd sort of forgotten about my cerebral palsy, even though it's obvious from my gait.

It's not something that I will ever forget about, this condition that is both a blessing and a curse. And I will continue to blog because I love this amazing community of people who understand. I love feeling that I can make a difference in my readers' lives, even if my words help only one person. Reaching out to others with my words is a privilege.

But behind this blog, I am a person. I have flaws and quirks and I am far from perfect. Sometimes I am confused and lost and anxious and unsure. Sometimes I watch cat videos in my pajamas all day.

And in the children's hospital that I spent so many hours at, there's this giant wishing fountain. Every now and then I would tug on my mom's arm and ask her for a penny so that I could make a wish. There were so many coins in that fountain, and sometimes I cry when I think about the parents whose children were fighting for their lives...how many coins in that fountain were from those parents? How many parents tossed pennies, nickels, dimes, quarters into that fountain and wished for their children to survive another day? Meanwhile, ladies and gentlemen, I wished for ice cream.

So you see, though I am trying to be the best person that I can be, I still have much to learn. Luckily for me, I can't think of a better classroom than life itself. So here's to imperfection! (Maybe I won't even edit this post!)

Wednesday, August 21, 2013

"Us" versus "Them" Mentality

First, I'd like to apologize for being MIA! College starts up again for me on August 27th, so I've been busy with friends, school stuff, and soaking up the last days of summer. Now on to the post...this is something that has bothered me for a while...

~

"You don't look SPED," some people say, referring to the fact that my cerebral palsy isn't immediately evident when I'm not standing or walking.

Is that supposed to be a compliment? Since when is "SPED" a word, and since when is it okay to call anyone that?

It bothers me to death that many people, especially those who are around my age, have that "us" versus "them" mentality. They're terrified of risking their popularity by associating with people who have special needs.

I saw this mentality in the hallways at my high school. Someone with special needs would wave or smile at another student, and that student would duck her head down, pretending not to notice. How difficult is it to wave back, people? If being popular means that I have to treat others as though they're less than human beings, I'd rather be unpopular any day.

I saw it in the classroom, when the teacher asked students to get into groups, and the kid with autism was left without a group. I leaned over and invited him into mine, but what struck me the most was the body language of the other students in the class. Their backs and faces were turned away from him, almost as if they were making an effort not to acknowledge his presence.

I saw it at a dinner party, when no one bothered to strike up a conversation with a girl who had Down Syndrome. I spent the next three hours talking to her about her life, and all I can say is that their judgment was their loss entirely. They missed an opportunity to talk to a girl who is so, so much more than Down Syndrome. She is a basketball player and a college student, she loves to spend time with her boyfriend, and she has an awesome sense of humor. Together we discussed our favorite movies and TV shows, reminisced about high school, and laughed about the stark differences in our sixteenth birthdays (I spent mine studying for a biology exam...she spent hers with her friends in a limo!). In short, if people had thrown away their prejudices and spent just ten minutes to get to know her, they would have realized that she isn't so different after all.

~

And I saw this "us" versus "them" mentality again recently. Someone was talking about a mother and her child, a boy with a cognitive disability.

He was referring to the boy as his mother's pet.

"So the lady's pet starting crying, and...," he said, laughing to himself. That's when I stopped listening.

"Her what? Did you just call that boy her pet?" I cut in. The words tumbled out before I could even think about what I was saying. Because that hurt. Perhaps if it had been a stranger, I could have written it off as ignorance...cruel ignorance, but still. It wouldn't have stung so badly.

But here was someone that I care about, insinuating that people with disabilities are somehow worth less than those without them.

"That's cruel," I said. "That boy is just as much of a human being as you are."

He looked at me in stunned silence for a moment, then nodded and apologized. Then he continued on describing his day. but I couldn't bring myself to focus on his words anymore.

What if you were that boy? I wanted to say. Would you value your own life less than those of other people? What if you desperately needed people to understand you, but you just couldn't get your tongue to form the words to explain your feelings? Before you deemed this boy as less than a human being, did you take a moment to look into his eyes? Did you see that he is a person too, a person whose spirit is perhaps a million times stronger than both yours and mine because of the challenges he must face every day to accomplish tasks that we take for granted?

And some of the passion that I have for this topic stems from my personal experiences. I know firsthand how much it hurts to be branded as "them." After they've seen me walk, some people won't speak to me or make eye contact. Others talk to me in a condescending way, using a cutesy voice as if I'm four years old instead of a teenager. By doing this, they're distancing themselves from me, trying to accentuate our differences and reinforcing that "us" versus "them" mentality. I used to let that make me feel inferior, until I realized that I am not at fault for their mentality.

People with disabilities, myself included, are not worth less than those without them. I am not less of a person because of my CP. We're all people, and we're all in this crazy, broken, awesome world together. "Us" versus "them" is an illusion. There is no "them."  

There is only "us."

Monday, August 12, 2013

The Day That Changed Everything: Part 4

By far one of the most difficult experiences of my life happened about five and a half years ago.

(Part 1, Part 2, Part 3)

As I stare at this blank page, I find myself grasping for the right words, but there really are no right words.

For most people, a broken leg is an inconvenience at worst, a few weeks in a cast and on crutches. But for me, there were no guarantees. For me, a broken leg meant that I might never walk on my own again. As I lay in bed, it occurred to me that everything I worked for, all of those hours of PT might amount to nothing, all because a nameless, faceless person decided to flip the spout on a water fountain.

I was out of school for the rest of that year, from December to June, because if somebody even bumped my leg the wrong way, it could implode. (And no, that's not an exaggeration. That was an actual warning from my orthopedic surgeon.) For three months, I wasn't allowed to bear any weight whatsoever in order to minimize that risk. So I hit the booksI basically taught myself for the remainder of eighth grade.

It wasn't all bad. My friends threw me a surprise party for my fourteenth birthday, and I learned how to get around without weight-bearing by propelling myself with my hands and using a computer chair with wheels.

But sometimes the unfairness of it all hit me like a ton of bricks. The well-meaning elderly people at my physical therapy appointments would sometimes smile at my physical therapist and ask, "What's wrong with her?" and my heart would sink. Because on one hand, I truly believed that nothing was wrong with me, that my challenges were making me stronger. But another part of me whispered, "Where do I even begin?" Do I start with the cerebral palsy or the broken leg that is breaking my life?

In mid-March, I was allowed to begin weight-bearing again, and that brought a whole new set of challenges. I literally had to relearn how to walk. Going from one end of the hallway to the other with a walker left me out of breath and sweaty, and it was slow and painful work, like running a marathon in slow motion. Each step required a tremendous amount of thought, and sometimes I just wanted to give up.

Here I was, at fourteen years old, and I was worse off than I was when I was three.

As my walking gradually progressed, I began using forearm crutches, but my gait was still slow and achy.

And I'll never forget my next doctors' appointment. My mom had asked my orthopedic surgeon what my outlook was like.

"She'll probably use the crutches for the rest of her life," he said casually—almost cheerfully, "and a wheelchair for long distances."

Just like that, my world came crashing down around me. For my entire life, I had fought against uncooperative legs to walk on my own, and here it was all being taken away from me in this doctors' office.

I could embrace cerebral palsy. I could embrace challenges. I could deal with the surgeries and the stares, the pity and the therapy appointments. But I couldn't accept the soul-crushing idea that the countless hours I spent strengthening my legs were a waste. I couldn't accept that everything I had worked for could be stolen from me by a puddle next to a water fountain.

No. I refused to accept that.

(to be continued)

Monday, August 5, 2013

The Gift of Disability

Sometimes when I tell people that my disability is a gift, they look at me with doubt written all across their faces, as if I'm either delusional or in denial.

I've noticed that people generally feel more comfortable defining situations as either black or white. And many individuals outside of the special needs community consider disabilities to be devastating tragediespitch black.

I want to stand on all of the rooftops in the world with a loudspeaker and contradict that notion with every fiber of my being.  

They're not.

Disabilities can be painful, and on the darkest days, they may seem unbearably challenging, but they're worth it. They're worth every tear, every fall, every ache.

At the end of the day, I couldn't care less about the handicap parking spaces that so many people joke about. And who cares that I'm allowed to be late to class when it rains or snows?

No. These "benefits" that people talk about, those mean nothing. Nothing.

Disabilities are beautiful not because of these petty "privileges," but because of the life lessons they impart. The challenges that send us to our knees and threaten to eat us up insidethese very challenges give way to strength, wisdom, and compassion.

And I would never trade that away. Disability has shaped me into the person I am today; it has given me a gift that I can take with me wherever I go.

Disability has shown me that the purest form of happiness is not our own, but that of others. When I was a toddler and still unable to walk on my own, simply watching my brothers chase each other would cause me to shriek with laughter. Their happiness was my happiness. I have found that the same is true in the broader context of life; the greatest joys come from helping others and watching the people we love enjoy the amazing adventure of life.

Disability has shown me patience. People in today's world are so preoccupied with speed and timelines, milestones and deadlines, efficiency and shortcuts. But my cerebral palsy has taught me that life isn't about who is the fastest. The people who rush to complete tasks and who are preoccupied with deadlines and milestones often miss the beauty that comes with fighting for something every. single. day, and they take everyday miracles for granted.

Disability has shown me perseverance. I have learned that diagnoses mean only so much, and disabilities are less about what we can't accomplish and more about what we can accomplish. My cerebral palsy has taught me that perseverance is a magic of its own. With determination, we can often transcend not only doctors' expectations but also our own.

Disability has shown me acceptance. Some people look at my crooked legs and see only brokenness in my clumsy steps...but in truth, I am so much more than my body, and so are you, disability or not. It seems that some individuals look at those with disabilities and consider them to be helpless, pitiable, and inadequate. This couldn't be farther from the truth. People with disabilities have personalities, quirks, talents, hopes, and dreams just like everybody else, and we, too, are capable of changing the world for the better.

I am thankful, so thankful, for the perspective that disability has brought to my life. Where others see a rainstorm, I see a rainbow. Not misfortune, not a limitation, not a tragedy.  

A gift.

Saturday, August 3, 2013

To My Readers

Every time I sit down to write this post, it seems that the English language fails me. There are no words to convey the gratitude that I feel towards my readers. "Thank you" just doesn't seem to be enough...

My favorite thing about my readers is this: You "get" it. Whether you are an individual with a disability, a parent of a child with special needs, or simply a compassionate person, you understand that disability doesn't equal tragedy. You aren't like the woman who said she was sorry that I was born with CP, who said that she doesn't know how I get through the day with a smile on my face. Because you know that I have an abundance of reasons to smile. And if you or your child has special needs, you know that you do too.

You
my readersare one of the many reasons that I smile when I wake up in the morning. For eighteen years, I was uncomfortable talking about my disability. Oftentimes, when I brought it up as a child, those around meespecially adults, such as teachersseemed to shut down. I sensed their trepidation and deduced at a young age that disability is seen by many as a "taboo" topic, something to be spoken about in whispers or behind closed doors.

So I kept silent.

But you, my readers, you embrace disability. You understand that it is not something to be ashamed of or hidden away. For the first time in my life, I am comfortable discussing the challenges and blessings that I face as a result of my cerebral palsy, thanks to you.

I owe so much to my readers, each and every one of them. To Kristi, who showed me Our Land and inspires me every day to be a better person. To Kerri, who was the very first person to comment on my blog, and who continues to warm my heart with her support. To Bron, who consistently leaves encouraging comments on my blog that move me to tears, including one that completely turned a difficult day into a wonderful one. To Tatum, whose recent response to my post was so beautiful that I was at a loss for words. To Tracey, whose kindness and beautiful way with words inspired me to start a blog. To Lizzi, who constantly offers wisdom in response to my posts. To Jacquelyn and Claire, who show me that I'm not alone and never was. And to anyone and everyone who has ever taken the time to leave a comment...because your words mean more to me than you could ever know.

You have changed my life. Thank you.