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.