When life doesn't go as planned...

I had so many plans for this summer. I had applied to too many internships and jobs to count. I planned on going to the gym and going through a summer long transformation. A while back, I even toyed with the idea of applying for a counselor position at the summer camp where I used to spend my summers growing up. But I was turned down for every internship and job. When I came home, I felt continuously way too fatigued to go to the gym, never mind leave the house. And I decided that not being able to escape the heat at camp would take too much of a toll on my body. (Because of my nerve damage, I suffer from Uhthoff's Syndrome. Essentially, heat + nerve damage = a very weak body.)

I was really frustrated that I had planned out an amazing summer in my head, and when summer rolled around, nothing was going right. I felt that I had failed. I graduate in May and have yet to get an internship or a job. It's not that I don't want one. Trust me, all I've wanted since I got sick and had to leave my job is to return to work. But it's incredibly difficult to find a company that sees a person in a wheelchair as a positive asset. Even though they legally can't have a problem with my disability, it's very easy to tell that they are uncomfortable with it all.

I've been feeling like this summer has just been a waste of time. That is, until I got the results of my most recent blood tests. My NMO antibody test, which has been negative for the last four and a half years returned to positive in June. Thankfully, I have a no-nonsense doctor who wasted no time and immediately called in a prescription for Rituxan. Rituxan is a chemotherapy drug that isn't technically approved for NMO, but is actually one of the most common courses of treatment among NMO patients. This means that I have to have two infusions of Rituxan, two weeks apart.

Today was my first infusion. Anyone who knows me, especially those who have ever come near me with a needle, knows that I am an extreme needle-phobe. Luckily the nurses in the infusion lab rock and had my doctor call in some valium for me. I am a hard stick and, not that iv sticks are ever pleasant, I've never had a pleasant iv stick... until today. The valium, without a doubt, made a world of difference. But I also tried a new pain management strategy. A few days ago, I read about a study that had been done about pediatric patients and music. They found that if children listened to the music of their choice, their pain decreased by 1 point in the 1-10 scale. So I decided to give it a go. Music has always helped me through treatments and procedures, but I had never listened to it during and iv placement. So I put my pink earphones in, blasted some Taylor Swift, and thought about how her concert is coming up soon. It worked! I felt the poke of the iv, but it went right in without a problem! (Shout out to the fantastic nurses in the infusion lab at Rheumatology Associates.)

Everything happens for a reason. Absolutely. Everything. Whether you realize it or not. If I had landed one of those internships I applied for, I can't even imagine my heartbreak if I had to give it up to come home and get treatment. Sometimes, there are just more important things in the world than getting work experience, you know, like my life and physical abilities. Getting this Rituxan means that I'll hopefully be warding off any attacks that may have occurred if I hadn't gotten the treatment I needed.

Don't get me wrong, I am upset that this summer didn't turn out the way I planned. But let's be honest, what actually ever turns out the way we plan? I didn't realize it at the beginning of the summer, but as time has gone on, I needed this summer to take care of myself so I can be in my best possible shape for my senior year of school. Only about a month and a half until school starts!

Living Every Single Day to the Fullest (Four Years)

So as some of you may know, November 15th marked my four year anniversary of going paralyzed. If you're reading this right now, I'm sure you already know by now that I was paralyzed by a rare autoimmune disease called Neuromyeltis Optica (NMO). But just in case you want to read up on my journey thus far, click here, here, or here for some of my older posts.

November 15th has been deemed an unlucky day in my family. Exactly five years before I began my battle with NMO, on November 15th, 2005 my cousin Donna Marie was tragically taken from us. She was 21 and in college, she had her whole life ahead of her. I was only in the 6th grade and looking back, I think I was too young to completely comprehend such a tragedy. Throughout my life, I've felt a connection with Donna Marie, she's someone that I think about often. Last year at an event on campus, I had my palm read and was told that my spirit guide is a family member who died when I was eleven or twelve. I was eleven when she passed. Suddenly, everything started to make sense. It may just seem like a strange coincidence that I happened to go paralyzed on November 15th, but I think it's a sign. It's a sign from Donna Marie that even though her life was cut short on November 15th, mine wasn't.

If the lesions on my spinal cord were any higher up, I would've lost my abilities to breathe on my own. If the doctor (who ended up saving my life) wasn't on call that day, I probably wouldn't have gotten the treatment that I did. There were so many different ways that day could have gone. But she was looking out for me that day. I could think about November 15th as the day that my life was ruined, but I won't. Instead of thinking of November 15th in a negative light, I like to look at it as a celebration of life. There isn't a single human on the planet that can say 100% they will be alive tomorrow, next week, next month, or next year. But right now, in this moment, I'm getting to live this life that isn't promised to me. Yeah, I use a wheelchair, but so what? I'm not letting it stop me from doing what I want to do in life. I'm going to make the most of every day that I have here. We never know when our time is up. I'm living these days for Donna Marie who didn't have the chance for another day. And wherever she is, I know she's watching over me.

Blisters

We've all had blisters. Whether they were from wearing new shoes, or walking without shoes for too long, they all hurt. Sometimes trying to avoid them is nearly impossible, and when we have one, it's like living in our own personal hell. Every step you take is like stepping on knives, and there's literally nothing you can do except wait it out.

Well today, I developed my first real blisters since being paralyzed. Currently, I have three, and they're all covered by very stylish Teenage Mutant Ninja Turtles band aids. And while I was pretty bummed when I realized that I have blisters, (all three are on the bottoms of my feet) I also realized that these blisters are so much more than sore spots on my skin. They stand for something. They mean that I'm not paralyzed anymore; they mean that I'm STILL progressing. Currently, I'm physically the best I've been since being paralyzed. I can walk faster and stand longer than I have ever been able to in the last three and a half years. And in the past year, I have lost 20 lbs without really trying. But I've started eating healthier since I've been home, so I'm looking forward to losing more weight this summer, as well as walking more and pushing my limits. 

It's truly incredible that I'm still physically progressing after all this time. I remember being told that I had to work as hard as I could to regain everything I could within a certain amount of time after being paralyzed, (I'm pretty sure it was a year) because after that, I'd stop progressing, and that's the amount of function that I'd be left with. But I'm living proof that that's not necessarily true. Anything is possible if you just put your mind to it. And right now, I'm determined to run again. I can't wait for that blog post someday! But until then, I'm just happy with my blisters. 

I Would Give Anything...

I feel like it's a rare occasion that I actually say anything like this out loud, but I would give absolutely anything and everything to be able to have a normally functioning body again. I try to make the best of a not so great situation, but there's always the fact that I can't do the same things anymore. Most of the time I can get along just fine, trying not to think about what I can't do, but rather the fact that I'm alive and have the ability to live on my own. Because after my whole existence was up in the air, it's pretty incredible that I'm almost halfway through college, and have been living on my own for the majority of the last two years.

It's that time of year, the weather is getting warm again, and it's supposed to be really warm tomorrow, but the nicest weather always brings out the worst of my thoughts. Maybe it's because I was always a slug in the winter, so not much has changed in that part of my life. But when I see my friends who are able to go out for a run, or are able to go play in the city for the day and don't have to worry about making sure every building is accessible, I get jealous. I should be able to do those things. I mean, I'm (almost) 20 after all. What 20-year-old wants to sit inside, knowing that their friends are all out having fun? Not this one that's for sure. But lately that's how my life has been going. I would give anything to be out there with them.

I know I have a lot to be thankful for, but it's hard to be thankful for just being able to breathe when the majority of my friends will be studying abroad in the next couple years. The worst is when I'm asked if I'll be studying abroad. Because I have to pretend like I don't mind that it's logistically impossible for me to travel through Europe in power wheelchair. I have to politely say no and leave it at that, because I know that whoever I'm talking to could not possibly understand why it's so hard to travel in a wheelchair. (And traveling in Europe at that.) I've always had the travel bug, so this stings. I've always wanted to travel the world, but it's hard to see that even being a possibility these days.

I just want to be able to run and play in the waves at the beach. But we all know that if I tried that, I'd end up doing a face plant right into the sand, and probably injuring myself in some way. And I know what probably 90% of you are thinking right now. "You can do it if you put your mind to it!" And while I really appreciate those very kind thoughts of encouragement, putting my mind to it will only get me so far. A lot of my hard work depends purely on how I'm feeling that day. I live with chronic fatigue. This means that many days, I wake up and my entire body feels like jello, regardless of the fact that I just got a perfect night's sleep. So as hard as I try, I only have so much energy for the day. And most of the time, I just end up napping, intentionally or not. I just wish I could be out of my wheelchair completely. Because I don't feel like someone who needs a wheelchair. I feel like a normal person. I can walk, just not for too long or on really uneven surfaces.

I'd love for a day to come when I can leave my apartment in the morning, wherever I may be living, (hopefully a city,) and not come back until the end of the day, never having even looked at my wheelchair. I just have to keep working at it because on those days when my legs don't feel like jello, I feel like I could take on the world. So I do.

Creative Reasons Why I'm Not Wearing a Jacket

It's no lie that this winter has been excruciatingly long and cold, especially by Philadelphia's standards. At some point in the winter, we all hit a wall where we can no longer put up with the temperatures that are so frigid, they can cause a brain freeze externally. For me, when I hit this wall, I stop wearing jackets all together. (Unless, of course, it's literally 10 degrees outside. Then I'll make an exception.) This causes a lot of "Why aren't you wearing a jacket" questions from everybody, from strangers to my best friends. Normally I shrug my shoulders and follow up with an "I don't know" but these days, that doesn't seem to be enough of an explanation. So I have created a list of creative reasons why I'm not wearing my jacket to use the next time somebody asks me. Here's to hoping that spring is just around the corner.


1) I'm from Maine.

This is the only one I've actually used since I moved to Philly. Growing up in Maine, it's in your blood to tolerate freezing temperatures. Sure, after a while, the cold can wear us out. But we know how to handle it like pros. I mean, we basically are pros after all. Hello L.L. Bean! But when the temperatures start to rise a few degrees, it starts to feel like a heat wave. It's nothing to walk into Hannaford and see at least five people wearing either shorts or a t-shirt. So since Philadelphia is a solid 10 degrees warmer than Maine most days, I feel like I'm in a constant heat wave. I did go to school south of New England for a reason.


2) I gave up jackets for Lent.

Okay, you caught me. I'm not actually Catholic. But they don't know that.


3) I'm not wearing a jacket in protest of winter.

I'm trying a little bit of a "If you build it, they will come" approach with this one. Maybe if I don't wear a jacket, mother nature will take the hint and it will magically be May. *fingers crossed*


4) My dog ate my jacket.

Considering I live on campus and all animals other than fish are strictly prohibited, this one probably won't work...


5) My gay best friend said it looked better on him.

So he stole it.


6) I sent it to the starving children in Africa.

Wait. That doesn't work. Never mind.


7) It's currently under investigation as a murder weapon.

I'm sorry. I can't talk about it. I've been sworn to secrecy.


8) Under this sweater is a very thick layer of naturally growing wool.

I'm sort of a medical mystery, so I'm actually the subject of a lot of research studies right now.


9) I just don't want to. Okay?

It's as simple as that, people. So stop asking.

If I wasn't convinced about fate before, I am now.

This is Brian.



















Brian and I met our first weekend at Philadelphia University. We met at one of those safe sex seminars every college freshman has to go to, where he symbolically gave me an STD. (When people ask how we met, we tell them that we met when he gave me an STD. We get some good reactions.) It was one of those exercises that symbolized how quickly STDs spread. I thought he was a nice guy because he was so friendly when we met, which was a rare occurrence for me as a college freshman in a wheelchair. Not many people were so eager to talk to me, probably because they had never really talked to anyone in a wheelchair before. I get it. It can be intimidating. So when we had to mingle and "exchange our STDs", I was nervous. But Brian walked right up to me and was the friendliest person I had met at PhilaU in those first few days. When I was in the moment, I didn't think I'd ever really talk to him again because I didn't know if I would see him. And I definitely didn't think that we would become best friends. But as I've learned in the last year and a half, fate has a funny way of working everything out.

I didn't really see Brian in the following days.  But then I started to run into him on campus every now and then. We'd exchange a quick "hello" or "how are you doing?" and continue on. I remember talking with him at an interest meeting for PhilaU Thon, a dance-a-thon fundraiser for the Children's Hospital of Philadelphia. But I started running into him more often and usually when I was either having a bad day and needed a hug, or if I just really needed help with something. The first time I can remember this happening was around October freshman year. I had lost my key and ID. Usually, I kept my lanyard around the control panel on my wheelchair, but when I went to grab it to swipe into my building, it wasn't there. It must have fallen off my wheelchair somewhere between Kanbar, our student center, and my dorm. For a normal person, that's about a 15 to 20 minute walk. So needless to say, I had a lot of ground to cover. I started back up the hill to the other side of campus, and who do I see riding down the hill on their bike? Brian, of course. He stopped to say hi, but he could tell something was wrong. I mean, let's be honest, I can't hide my emotions very well. I let him know what happened and he insisted on helping me search for my keys. We searched campus twice and even stopped to ask the people at the front desk in Kanbar if they had any lost keys. No luck. But it was so incredibly nice of Brian to stop what he was doing to help me look. After having been through all of the friend problems I had been through in the prior years, it was unfathomable to me that somebody my age who was so kind actually existed.

Another fateful run in with Brian occurred about two months later. I was heading into Kanbar because my community service class met there. Earlier that morning I had severely burned my finger while trying to straighten my hair. I didn't own any burn cream so I planned on running to Rite Aid later that afternoon. When I got through the doors, I saw that Brian was sitting on the couch so I went over to say hi. I explained to him what happened. Since the health center at my school isn't wheelchair accessible, I hadn't even thought about going there. Brian walked over with me and even went inside to explain to them that I couldn't get in there and that I needed stuff for my burn. They ended up giving me a baggie full of bandaids and some hydrocortisone cream, which last time I checked isn't burn cream. But the bandaids were definitely helpful. Had Brian not been there, I wouldn't have had access to the health center's free bandaids. Fate was definitely at work that day.

Brian and I were running into each other a lot by this point in the year. It was a lot of "right place at the right time" situations. And through all of these run-ins we became close friends. Second semester group of about 5 of us, including Brian, started eating breakfast at the same time. We'd always run into each other and after running into each other for the 3rd or 4th time, we decided to start our own "breakfast club". Every Monday, Wednesday, and Friday we'd hang out for an hour or so and eat breakfast together. It was the thing I looked forward to most when I would go to bed at night. Our breakfast club truly made me feel like I belonged at PhilaU. Had we not all been getting breakfast at the same time, I don't think we all would have become so close. Shoutout to you, Jenna, Becca, Brian, and Shakarr. You guys rock. <3

Tonight, I definitely experienced fate at it's finest. As we all know, over the last 24 hours or so, the east coast has been getting pounded. I decided that since it was a snow day, it was the perfect time for a dinner party. Jenna, Becca, and Brian, as well as our other two friends Scarlett, and Sarah came over for lasagna. I love throwing dinner parties. It must be the nurturing part of me. I can't mother Camden since I'm at college so I invite my friends over and force feed them large quantities of homemade food. I'm sure they don't mind. A while after everyone went home, I went to meet Sarah and Becca for ice cream at Kanbar. Since it has been snowing, I excepted the sidewalks to be a little slushy. When I got outside, the sidewalk which is normally wide enough for two people to walk side by side, was now so narrow that it wasn't even enough for one person to walk. Since my wheelchair is  pretty good at plowing through the snow to get places, I didn't think it would be much of a problem. That is, until I started going down the little hill. I wanted to turn around and just go back to my room but I had hit a point of no return. The width of the path that was hardly shoveled wasn't big enough for my wheelchair to turn around. I decided I'd continue down the path and hope for the best. Where the pathway meets the street is always a problem area that physical plant at PhilaU always neglects. When I tried to get my wheelchair through the pile of snow and slush, my wheelchair stopped moving. It's pretty common for that to happen when I'm driving it through the snow, so I tried to back up. Except, that was a mistake because I only sunk deeper into the snow. So there I was stuck in the snow part way into the road at 10:20 at night. Thankfully it was that late so there weren't many cars around, because the chance of me getting hit by a car was pretty big. When I realized how stuck I was, I called Sarah to see if she could help me dig it out of the snow. When I looked up to see who was walking on the other side of the road, of course it was Brian. I yelled to him that I was stuck and he came over and helped me get onto the sidewalk while he got my wheelchair out. He then had me get in my chair and he helped to push me up the hill to my apartment building. He's so selfless and will go out of his way to help anyone he meets. We both can't believe the perfect timing of tonight. Had I left any later, he already would have walked by.

Brian has become one of my best friends. I feel like fate brought us together for a reason. We're always there for each other when the other one needs anything. We both were accepted to multiple other colleges. What if one of us decided to go somewhere else? What if I decided to stay in my room instead of going to the seminar? What if he hadn't been there tonight? I can't imagine my life without him. I'm so lucky to have such a wonderful friend.

Songs and Memories

We all have memories connected to specific songs. When we hear those songs they can catapult us into intense emotions. Whether it's a song that makes you reminisce about that one summer in high school having the most wonderful time of your life, or it's a song that brings back the feeling of a brick in the pit of your stomach because it reminds you of a dark time in your life, it's natural and it happens to all of us. For me, I have songs upon songs all connected to very specific memories and emotions. I've always been someone with a deep passion for music, so I think one of the biggest ways I make memories is by connecting them to music.

Recently, I've been finding that I've been dwelling on the past a lot. I'm not quite sure why. Maybe because it's winter, and we all seem to be a little bit more gloomy this time of year, or maybe I just have too much downtime now that I have my own room. But my memories of the months leading up to getting sick have been in the back of mind for a few weeks now, and there is one song that I can't seem to stop thinking of.

"Mine" by Taylor Swift was the first single off of her album Speak Now. It was released as a single in August of 2010, which in my memories was one of the happiest times in my life. I was 16, working at Ralph Lauren, had my license, and my own car. I was literally carefree. My nephew was seven months old, and I got to spend a lot of quality time with him because he and my sister were living with us. Whenever I hear "Mine", immediately, I am 16 again. I'm getting ready for my junior year in high school by shopping with my mom at the outlets in Kittery. We are at the Ralph Lauren outlet buying some clothes that weren't in stock at the store in Freeport where I worked. I was generally pretty healthy and had just returned from an amazing two weeks as a leader in training at the YMCA Camp of Maine. I was planning on applying for a full counselor job for the following summer. I was at a point in my life where I was finally gaining some freedom. I could drive myself to and from school, so if I needed to stay after for any reason, I didn't have to call my mom and wait for a ride. I could hop in the car and go hang out with my friends whenever I wanted to. My life was really spontaneous. There's one night I specifically remember where I had just gotten out of a long day at work, it was about 8:30 pm, and my friend told me to come to his house where there was an impromptu party in his backyard. So I threw on my boots, drove right over, and we all had a really amazingly fun night.

When I look back at these memories I remember how happy and carefree I was. Now, don't get me wrong, it's not that I'm not happy now, because I am. I can say that I truly love my life right now. But when I compare my 16 year old self and my current self, I can find many differences, the largest being that any sense of being carefree has been completely stripped from me.

I worry all the time now. I think it's just a consequence of being a teenage girl with a chronic illness. I worry about being able to return to my previous physical condition. I worry about relapse, A LOT. I worry about losing the weight I gained from life-saving medical treatments three years ago. I worry about whether I'll ever be able to find a job in the corporate retail industry. I worry if people even take me seriously, or if I'm just brushed off as another invalid in a wheelchair. I worry about being at Target, by myself, without a wheelchair, and falling without any way to stand up. And for as much as I claim that I don't care what people think about me, I worry about that too, more than I should. My mind is constantly running now in comparison to three and half years ago.

Something else that is very different is that I have this strange need to have every second of my day planned out. If someone says "let's get dinner later" I want to know what time and where we're gonna eat. I like to know how much time I have to work with, mainly because I need an afternoon nap. But sometimes I can't nap until around 4 or so, so if they want to eat at 5 then I need to know, so I can skip my nap. There's a lot of thinking and planning that has to go into my days, it's exhausting. I also have a hard time just hopping in the car and driving somewhere with friends. I can't go anywhere where I'll need to be wheelchairless for more than 30 minutes, otherwise, I'll have to drive so I can bring my wheelchair, providing the building is wheelchair accessible. So I find that I often miss out on typical college activities with friends.

So this ended up being a longer than expected post, but 3 minutes and 51 seconds of a song can evoke a lot of emotion. Usually, I try not to let myself listen to "Mine" because it brings back so many memories, but recently I haven't been holding myself back so much simply for the fact that it's a really good song.

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! :)

Truly Happy for the First Time in a Long Time!

For the first time in almost two years, I feel like I can say that I am truly, 100% happy with my life. I feel like the fact that I was given the opportunity for a fresh start is a big part of why I am so happy. I'm not reminded everyday that my life is not the same as it used to be, and that I'm not the same person anymore. Instead, I am in a new place where everybody only knows me as who I am at this point in my life. I don't see the poisonous people who I once called my friends. Instead, I see a group of absolutely wonderful friends each and everyday. They aren't friends with me because they knew me before I was sick so they would feel guilty if they stopped being my friend (like a lot of people at home were). They're friends with me regardless of my handicap. In fact, I think the best part about Philadelphia University is the friends I have made. And I have so many different groups of friends. Some I see more than others, but they're all so awesome. I feel like they all have been so accepting of me. My life is going in the perfect direction for me right now. I feel like I'm going to be so successful here.

Interesting Experiences...

So the first thing I need to do is give a shout out to my cousin Sara. This summer I followed her blog Adventures of a Cool Mom religiously. She was sort of my inspiration to write this blog. So yeah, everyone should go look at her blog (when you're done reading mine, of course) because she's hilarious slash awesome slash pregnant.

Now back to the reason the actual reason why I'm writing this post. It's been a month since I moved into college and I have definitely had my share of interesting experiences (hence the name interesting experiences).

I guess I'll start with my first day of classes.
It's 10:45 and I start to make way up to a building (which I was told was accessible) by my dorm for my 11 o'clock American transitions (BORING!) class. When I get to said building, I realize the only way to get in is to go up 3 or 4 steps. When I look at my schedule to double check, I realize my class is on the second floor. I then see a group of adults who look like professors. I ask them how I am supposed to get to class. They then pointed out that there is a ramp on the side of the building (which was locked) but my class is on the second floor and the elevator was BROKEN. I couldn't believe that it was my first class of my college career and I was physically unable to go to class. The professors then apologized and went their way. I started to panic. When I start to panic, I get these little prickly itchies (yes, I made up that word) all over my head, neck, and chest, and sometimes the rest of my body. I'm not going to lie, I started to tear up a little bit. Was my professor going to be mad at me? Was I going to have to drop the class? The uncertainty of what was about to happen was undeniably terrifying. By now it was about 11 and class had already started. I saw a girl running as if she were late for class. I asked her what class she had and she told me she has American transitions. I was so relieved when she told me that! So I asked her if she could tell the professor that I couldn't get into the building and that I was sitting outside. A few minutes later the professor came out with the syllabus and explained to me that another prof. wanted to trade rooms and that my class would then be in a more accessible building. What a relief! He told me not to worry and I went on my way back to my dorm to hang out until my next class. Nothing like keeping me on my toes, right?

My next class was in an accessible building and I loved my prof! But my third class of the day seemed to be a repeat of my first class. Thankfully this time I was with another girl from my class who went in to tell the prof that I had no way to get in the building. So once again, they moved the class and I didn't have to attend the first class, which I really didn't mind. Thankfully, the rest of my classes all worked out and I have no problem getting to them.

The last interesting experience I'm going to write about is going into the city using public transportation.  I got the opportunity to do this last weekend with a friend of mine who grew up 5 minutes from campus. I figured she was the best one to travel with seeing that she knows her way around Philly pretty well. Anyways, after waiting with my friend Amber, the bus finally arrived and I began to get nervous. When it pulled up to the curb, the bus driver lowered the bus and the pressed a button for a ramp to fold out. I rolled onto the bus and looked around at a bunch of people who looked like they probably have killed a few people or do meth. Basically, I was pretty scared. The bus diver moved the seat for me and I moved my wheelchair into position. He buckled my chair in and off we went. It probably wasn't the best idea for me to be on Facebook while on the bus because by the time we arrived in the city, I was beyond nauseous. But when I got off the bus I was so excited that I had survived my first bus trip! We played in the city for a while, mainly window shopping, and about 3 or 4 hours later, we decided to head home. This time the bus wasn't filled with a bunch of meth addicts, but a lot of fellow college kids. I'm so happy I learned to use public transportation because now I feel like I can go anywhere! I'm not stuck on campus.

I guess I should probably go to accounting now... (look at all that enthusiasm jumping off the page) There will be plenty more interesting experiences coming your way... trust me!

My Past and Where I am Today.

My name is Caroline Hinckley. 

I have a rare auto immune disease called Neuromyelitis Optica which paralyzed me from the neck down when I was only 16. Since then, almost two years have passed and I regained my ability to walk. I am still very weak and have to use a wheelchair to get around, but I am trying my hardest to regain my strength. Adjusting to life in a wheelchair has not been the easiest thing I've done in my life. I used to be a very independent girl and never wanted anyone to do anything for me. While I was paralyzed, I had to have people do EVERYTHING for me. My independence was ripped from my 16-year-old hands. People had to feed me, bathe me, even scratch my nose for me. I hated it. I do things in a very particular way and trying to explain to my mom just exactly where and how I wanted my nose scratched was a nightmare. 

But over the last two years I have been able to gain enough independence to move off to college (8.5 hours away, mind you) and live on my own with nobody to help me but myself. The thought of this scared me for the longest time, but I have been here at college (in Philadelphia) for a month already, and I am loving it! I feel like my life is going right for the first time in 2 years. So I hope to use this blog to show people the other side of the girl in the (hot pink) wheelchair and to let others follow my journey through college.

Some pictures of myself

My nephew (Camden) and I

Prom!

I'm actually the coolest auntie ever!

My family and I at graduation