Negativity + Determination = Success

Today, I watched a "Ted Talk" by a woman named Lizzie Velasquez. Lizzie was born with an extremely rare condition that prevents her from gaining any weight, and she has never weighed more than 60-something pounds in her whole life. Because of her condition, Lizzie does not fit into society's description of what a "beautiful" person should look like. She has faced a lot of bullies and negativity throughout her life. In fact, a few years ago, Lizzie found a youtube video of herself naming her the "world's ugliest woman". Lizzie has a determination inside her that often I feel inside myself.  Lizzie's determination to succeed was driven by all of the negativity in her life, all of the people who said she couldn't do something, all of the people who didn't believe in her. So Lizzy set goals for herself. And you know what she did? She accomplished them. She graduated college, wrote books, and became a motivational speaker, all things people thought she could never do. 

After being in a wheelchair the last three years, I've encountered a lot of negativity. Everything from being told by my high school to drop out of my junior year and "try again the next year", to residence life at my college telling me that I wasn't allowed to have a roommate because I was in a wheelchair. By the way, I won both of those battles. Not only did I not drop out of high school my junior year, I graduated ON TIME with my class, and with decent grades to boot! And at that graduation ceremony, even after breaking my ankle 2 months prior, and just getting cleared to put weight on my foot earlier that week, I walked across that stage, walker and cast in tow, to receive my diploma that I was so incredibly determined to earn. And the best feeling in the world had to be seeing every single person that had caused so much negativity in my life STANDING and clapping for me, because I showed them that I was not going down without a fight. And in fact, I had won the fight. I proved them wrong. And that made all of the Saturday morning tutoring sessions, the times when I was so exhausted I just wanted to give up, and even the whispers in the hallway, worth it. 

Now, the roommate in college was a battle that nobody saw coming. I figured I'd just have trouble getting my roommate to understand what some of my issues were, and getting her to respect my space. I never thought I'd actually have to fight to even be placed in the same room as another person. Because to me, I was still Caroline. I didn't see the handicapped girl in the wheelchair who came with many challenges and problems attached. But what I did see was the fun-loving goofy girl who had been through a rough time, but could rock that pink wheelchair of hers. So when I was told I was not allowed to have a roommate my FRESHMAN year in college. I was absolutely devastated. They were discriminating against me. Why was I not allowed the same opportunities as every other college freshman? So I fought. And I wrote multiple emails. And eventually, I got them to see my point of view. I did end up with a roommate, and although it wasn't the best roommate match, I'm so glad I had the experience. If I had the chance to do it all again, I probably would. 

Lizzie uses the negativity in her life to fuel her success. I've used the negativity in my life to fuel my success. If you do the same, I can almost promise that you will succeed. 

Finally, about a year before I was sick, while trying my best to pass a class that my teacher told me to drop, I saved a fortune from a fortune cookie. It reads "The greatest pleasure in life is doing that which others say you cannot do." It was so relevant to my struggle in that class and I kept it taped on my binder for the rest of the year. When that class ended, I taped that fortune on the bookshelf next to my bed. Every night I read that quote before I go to bed and it feeds my drive to succeed. 

And by the way, I passed that class.



Click here to watch Lizzie's Ted Talk. She is truly inspiring and motivational.

An Unapologetic Post About Letting "Friends" Go

There comes a point in some friendships where the relationship has turned toxic. It's not always easy to come to terms with this. Since getting sick, I have encountered toxic friendships many times. For a while, I ignored what these people were doing to me. I let them fool me into thinking that they were my friend, even though I truly knew that our friendship would never be like what it used to. I let those people make me suffer through over a year of loneliness. These people used to be my friends. We hung out often. But chronic illness and a wheelchair sure can scare people off. Eventually I got tired of them saying "we should hang out sometime" and then never acting on their words. So I let them go. It sounds simple, but it was one of the hardest things I've had to do in my life. Letting a friendship go requires a grieving process of sorts. There were a lot of tears and there was a lot of anger, but at some point I just deleted them from friends lists, deleted their number, and hid all pictures I had of them. These people really screwed me over, and I could finally see it. But just because I had erased them from anywhere where I could see them, it doesn't mean that they were out of my memories. Still, I reminisce about the days before NMO.

When I left for college, I was both excited and terrified about the new friendships that were about to blossom. The first two weeks at school were terrible for me. It seemed that everyone had found their "group" and I still hadn't made a real friend yet. (Little did I know, I met someone who would become one of my very best friends at orientation weekend) When I finally started making friends I felt like I was proving all of those people from home wrong. There actually are people out there who want to be friends with me, regardless of the wheelchair. By about halfway through first semester, I was friends with the group that I would end up spending a lot of time with, and eventually would consider some of my best friends. (Not the person I mentioned earlier.) So it came as a shock to me when about a month and a half ago, these people started to become very sour towards me. Nothing had changed, except for the fact that I was back in my wheelchair full time due to a severely sprained foot. But all of a sudden, they stopped talking to me and stopped wanting to do things with me. Eventually we started getting in fights relatively frequently, and I started hearing about someone talking about me behind my back. The relationships had turned toxic. I did a lot of soul searching and realized that these people were making me feel the same kind of loneliness that I felt back in high school. This was not okay with me. When I decided that there was not going to be any future in these friendships, I decided that I'd have to let them go at some point. Recognizing that I needed to let go was surprisingly easier than before. Was it because I'd gone through it before? Was it because I knew we actually had nothing in common? Was I just fooling myself? I'll probably never know. But I'm just over having friends that think it's okay to treat me like crap. It's empowering knowing that I won't take crap from anyone anymore. I deserve to be happy. And if making myself happy means letting someone (who I thought was my friend) go, then so be it.

Note: Regardless of the few people I talked about in this, I still do have some pretty amazing friends. And someday I'll have a whole blog post dedicated to them. They're some pretty incredible people. <3

November 15th.

Three years ago I went paralyzed from the neck down. I was sixteen and the happiest I had ever been in my entire life. 5 months prior, I had gotten my first job (and it actually paid above minimum wage). A month later, I passed my driving test on the first try. The beginning of the school was off to a great start; I had stellar grades, and a role in my school’s production of Romeo and Juliet. I felt invincible. But clearly, I was not. We didn’t know it at the time, or even for weeks after the fact, but I was preparing for the fight of my life. It’s only in retrospect that we can really think about how close to death I was. I believe it’s that way because when you’re so close to dying, you don’t think about death. You think about life.

The first two weeks that I was paralyzed are a complete blur in my memory, and that’s probably for a good reason. I’ve been told so many things about what I was like in those two weeks. Obviously the first thing I was was drugged. Because of this I’m not sure how much of what was happening to me was actually registering in my mind. My mom has told me that I was determined to be out of the hospital by the end of the week in time to perform in Romeo and Juliet. And when that didn’t happen I was focused on Thanksgiving, which we inevitably ended up spending in the ICU. After Thanksgiving passed, the next date was Christmas. But it no longer was my goal to be home. My only Christmas wish was that I had full use of my hands again. That also never happened, but I guess paralysis overrules the magic of Christmas miracles. It took me months to realize that I was going to be in this for the long haul. Somewhere around February, it dawned on me that I could sill be in the hospital on my birthday, April 29^th. Thankfully, that didn’t happen. (I beat it by a whole day!) But still, the realities of what I had already lost, and had yet to lose hadn’t totally sunk in yet.

If someone told me beforehand that I would lose my best friend, as well as countless other relationships, and my prime teen years, I probably would have laughed in their face. I was sixteen, just beginning my life. My best friend and I promised to always be there for each other, even fantasizing about being each other’s bridesmaids when our wedding days would come. Little did I know, my life would never be the same.

But I can’t focus on all of the bad things this disease has thrown at me, because honestly, it’s done some pretty amazing things for me. First of all, it gave me the ability to realize who my true friends are, even though it’s not fool proof. I’m still learning, even now, that some people are very good at hiding their true personality even if you’ve known them for a year. Another is that for every dead friendship, there was a brand new one waiting for me on My Devic’s Family, a wonderful group of wonderful people who share the same disease as me. They’ve all “been there, done that” and can share their experiences with me. I learn so much from them each and every day. Last week, I traveled to LA to attend a conference and meet a whole bunch of them. They’re some of the best people I’ve ever met. Being sick has also given me the ability to find beauty as well as humor in all things. It was the only thing that got me through six months in the hospital.

But most importantly, it’s taught me to love harder, to mean everything I say, and to live every day like it’s my last. There’s no time for regrets; you only get one chance.

The Frolicking Naked Women in the YMCA Locker Room

In addition to traditional physical therapy, I also do pool therapy at the YMCA. It's very effective and I enjoy floating in the water at the end of a long session. But there's one thing I'm not so fond of. The naked women who feel it's necessary to frolic around the locker room completely naked. Now, I don't mean to sound rude, but I DON'T WANT TO SEE THAT. Yes, I understand if you quickly change your clothes in the corner with your back to everyone. But when you're standing in the mirror doing your hair, hanging out in front of the fan while you dry off, or doing every single thing you need to do, while you're naked, it's a little bit much. Don't ya think?

I'm that awkward age where I'm way too old to use the girls' locker room, but I'm not as old and saggy as many of the women in in the women's locker room. I feel like there needs to be a "young adult" locker room for people that don't appreciate hanging out with naked old women.

The thing about these women I'm describing is that they have absolutely no modesty. So when they're hanging their saggy boobs out to dry by the doorway, people have to awkwardly squeeze by. But my problem is, because I'm in a wheelchair, I can't just squeeze by. Instead, I have to run face first into these women because they WON'T MOVE! It's actually quite a traumatic event for me. So when I go to pool therapy I try to spend as little time as possible in the locker room. I come already in my bathing suit, and when I get dressed, I do so in the bathroom stall.

Maybe next time I should try to use the family locker room.

Two years ago...

I've come so far, I really have. But I can't help thinking about this time two years ago. It was this time of year in 2010 when I started to get sick (quite literally, actually). I started in with a nagging nausea on Columbus day (Monday the 11th) while shopping with my mom at the mall. The next day I still felt nauseous but I was able to do school. I came home and started in with frequent vomiting. I was vomiting so much that it turned into dry heaving (not a pleasant feeling). Now, I can't remember when the hiccups started, but I had uncontrollable hiccups for days. Once case lasted FOUR days. It got to the point where my ribcage was just so sore and tired. My mom brought me to the doctor's office/emergency room multiple times and nobody could be really sure what the exact problem was. Eventually I was admitted to our local hospital. During my stay, I was so nauseous that nobody could eat in my room. If people wanted to eat while visiting me, they had to go to another room. I stayed there for three nights until I was strong enough to walk a little and less nauseous. My vomiting had also calmed down a little bit. I went home and spent a few days there but I also started to develop a weird, single, longer drawn out hiccup that usually happened around the time of throwing up. I wasn't getting better and finally we just decided that my mom would bring me to Maine Med (a larger hospital about 30 minutes from my house). After a visit to that emergency room, I was admitted to the Barbara Bush Children's Hospital (the children's wing in Maine Med). When I was at BBCH the drawn out hiccup I had experienced before turned into more of a seizure type thing that would occur every hour. Actually, this is how it went, I would get the seizure/hiccup thing, I would pass out, and then I  would wake up and then throw up. This happened every hour on the hour. (No, I was not looking at a clock and making myself do it). Eventually they spread out and I wasn't vomiting very often. I stayed in BBCH for three nights, also. It seemed like forever since I had been outside (little did I know that I would learn what that actually feels like). It's so weird looking back on that point in my life. I didn't think I was very sick at all. It's like my life finally got back to normal after that, and then I ran into a brick wall in November. I know I can't change what happened to me, but I do have days when I miss my life pre NMO.

Just a short rant...

Nothing makes me more mad than when people take advantage of things meant for handicapped people (i.e. lazy people using mart carts, people parking in the handicapped parking, legally or not, when they don't need it... etc). Earlier tonight when I went to the bathroom I saw that there was a girl who was waiting for a shower. I figured that there must have been a ton of people showering at the time. But as I went further into the bathroom I saw that there were FOUR open showers... FOUR OF THEM! We have five showers. The only shower being used was the handicapped shower (which the school basically built for me). You have got to be kidding me. This girl was so desperate to use the handicapped shower that she would wait while somebody else used it even though there were four free showers. I couldn't show my anger though (I have to save it all for the blog). So I did what I needed to do and went on my way. But in all honesty, people really just need to realize that things like that weren't made for fully capable people. And yes, we do mind if you use it. There have been many times that I have had to wait a long time for a shower because the one other person showering HAS to use the only shower that I can use. So I just ask all of you to be more aware of your actions. You may be pissing off a person in a wheelchair, and that's never a good idea. Especially when it's motorized. :)

The Ivanacs, Family Day, an Amazing Vampire, and AJ!!!

It's been a while since I've posted so there's a lot to catch up on.

First, THE IVANAC CLAN CAME TO VISIT ME! This was probably the highlight of my time at PhilaU so far. On September 22nd, Mrs. Ivanac, my 7th grade English teacher brought her husband, Doug, and her two girls Ellie and Gabby to Philly for a visit! Mrs. Ivanac is the coolest person ever. The last time I saw her was almost two years ago when I was paralyzed from the neck down and in the hospital. We spent the day in the back of sketchy restaurants, stealing forks, eating amazing dessert, being tourists, laughing at people in crazy outfits, and wondering if the drunk man on the bus was going to vomit on the stroller. Basically, the day was amazing!

Last weekend, my parents came to visit me. It was weird to see them because the last time I saw them was 6 weeks before when they left to go back to Maine after dropping me off at school. I hadn't gone a day without seeing my parents in the two years prior and suddenly I was on my own. I was pretty excited to be off campus for a while. My parents took me out to dinner on Friday, then on Saturday we went out to breakfast and had lunch at the school's parent's weekend barbecue. It was so nice to have food that wasn't "dining hall food". We then met up with some old friends who lived in Maine but currently live in Maryland. And while we were visiting, my sandal broke. THE ONLY PAIR OF SHOES I HAD FOR THE WEEKEND. I was staying with my parents at my aunt's house that night and my school was a good 30 minutes away from where we were and we were meeting people for dinner soon. We found that there was a mall very close and it happened to be the exact place where we were going for dinner (The Cheesecake Factory!). Bobbie, one of our friends who we were visiting suggested that we try Nordstrom Rack. Being from Maine, I had never heard of this store before. It's basically an outlet for Nordstrom, aka, discounted designer clothes. Little did I know Nordstrom Rack and I were about to become BEST FRIENDS! They carry designer shoes all the way up to size 13(my size)!!! NO WAY! This is literally the COOLEST store ever! The only store that ever carries size is Payless. The shoes there aren't always cute, and there's never many options. Nordstrom Rack had tons of shoes in my size! I hadn't been able to shoe shop like that in years. Dinner that night was very good and I got to stretch out on the pull out couch at my aunt's house! On Sunday my mom and aunt took me shopping at the King of Prussia Mall (the 2nd largest mall in the United States) where we shopped all day. I ended up with a new (and very cute) winter coat, a sweater dress, and two (desperately needed) bras. The day was extremely successful and at the end of the night it was hard to say goodbye to my mom. I didn't get to say goodbye to my dad. I was still sleeping when he left for a guy's day with my uncle. I'm working on getting them to come down this month. But if they don't come down this month then I won't see them until Thanksgiving. (yes, mom, I know you're reading this.... come to Philly!!)

Now, the amazing vampire. When my parents were down here for parent's weekend, they took me to get a routine blood draw at a nearby hospital. I HATE having my blood drawn, which is very ironic considering I am on blood thinners and need my blood drawn about once a month. Anyways, my veins are extremely difficult to get blood from and sometimes the "best" phlebotomists can't get it. Well, at the Roxborough Memorial Hospital there is an amazing vampire (phlebotomist) who got my blood with only one stick and zero pain! This was definitely worth blogging about because it's so hard to get my blood and this trip was such a success!

Finally, today (October 7th, 2012) , my cousin Sara, author of Adventures of a Cool Mom delivered her baby! His name is Austin Xavier Jones (to be known as AJ) and he's super cute! I'm really jealous that I'm not there to be able to meet him while he's still a newbie, but that will make going home for thanksgiving that much sweeter. So yeah, Sara, here's AJ's shout out! I told you I'd post one for him! :)