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.