September 28

I went to the Redskins- Cowboys game a couple weeks ago with Dusty. His family has had season tickets for over 45 years and they're amazing- 30 yard line, only 20 rows up. The preseason game I went to went well, accessibility- wise. It was easy and the seats weren't much different. Yet, as we prepared to go to this game, we called the stadium to make sure we wouldn't have to do anything differently. They assured us it would be just as simple and told us to just get there early. And that's exactly what we did. We ended our tailgating early and went inside. We visited guest services then got the run around, being sent from one section to the next. At one point, we actually had good seats in the wheelchair section closes to our regular seats, but were told we couldn't sit there because other season ticket holders needed them. We said "but we're also season ticket holders..." Everyone had said that it was a "first come, first serve basis" and that it didn't matter if you had season tickets. It's a ridiculous system... I mean, someone with season tickets should definitely have priority over someone who is cheering for the other team and might show up to one game a year. Anyways, we were sent back to guest services then to ticket sales and almost 45 minutes later, we had tickets in section 437. Yeah, moved from 103 to 437. HOW RIDICULOUS. Dusty has been going to games as long as he can remember and he's never sat that high...he actually didn't even know where the elevators were because he's never had to use them. (Which is also a stupid system, but I guess that's a different story....the elevators don't have buttons! They told us to just stand there and wait for the doors to open..like it would someone recognize our presence. Needless to say, I'm not that big a fan of FedEx field right now). So we get up to our seats and anytime someone in a wheelchair needed to move, like to get food or go to the restroom, every single person in a wheelchair had to move out and we'd have to rearrange ourselves. Tell me what's accessible about that. 

I was so mad and fired up....I was ready to yell at someone. I usually bite my tongue and Dusty is always telling me to stand up for myself. Well, I was ready to do it right there, but he told me no, haha. In his words "now is not the time to finally start listening to me." I can't blame him, we didn't want to miss any of the game (not that it was that great of a game anyways, considering that they lost, which was just another thing that helped make it one of the worst days we'd had in awhile.) instead, I spent the whole first quarter sulking. Then, when I got home, I called FedEx and told them how unacceptable things were. It took some back and forth, but I now have a girl's personal cell phone number that I can use if anything goes wrong again, and I have six field passes to the Giants game on New Year's Day. They said I opened their eyes to a problem they have with accessibility and they are going to work on it now. See, it pays to be an advocate. If I don't stand up for myself or point these things out, then who will? How many other people have had the same problems or will in the future if nothing is done? 

September 26

I haven't been able to blog as much because my phone has been acting up. I downloaded the app for the blog site a while back because it made it easier to just type a little bit of a post here and there..whenever I found some time. Then I could just post it when I found enough time to finish it. Not only is my phone having trouble, but the app keeps closing out un-expectantly. Whenever I'm in front of my computer, it is usually to do school work, not to type up blogs...and so much has been happening that I get overwhelmed anytime I think about writing a post because I just have so much to say!! But enough people have reached out, asking where I've been, that I figured I better start somewhere!

Like I said, I've been doing a lot of school work and spending a lot of time at the gym. I've also been trying to catch up with people and reconnect with individuals I haven't seen in awhile. Just last week, I was able to meet up with a friend I haven't seen since high school! She's now married, has a newborn baby, and is living in another state. She reached out to me and asked if we could meet up while she was in town, visiting her family and I couldn't say no. We had a great lunch and really enjoyed hearing what each other have been up to over the past seven years. We're even trying to meet up again next time she comes to Winchester and asking a few of our other friends from high school to join...sounds like a reunion!

I went back to KKI last week because we dropped my grandma off at the airport in Baltimore. I was able to meet with Vickie again, spend some time in the wellness gym, and catch up with some of the friends I had made there. I get to go back again tomorrow for the day because we're picking grandma up from the airport. I'm just so thankful for KKI- the patients, the therapists, the recovery I've made...all of it! Several of the therapists have ordered t-shirts since they can't make it to my run and it's just really nice to see all that support. (Therapists and staff from Magee may also place a t-shirt order thanks to how amazing Natalie is--who I've also been able to keep in touch with and can't wait to see when I return to Philly in October for my wheelchair appointment).

September 25

School has been keeping me really busy...at least two new lectures are updated per week, which really doesn't sound bad, but each one is at least TWO HOURS LONG. It's been a little difficult doing things remotely because it's not like I'm sitting in class, talking to my peers about what's going on or able to walk to my professor's office whenever I have a question. I've also found it a little difficult that I'm learning things "in the classroom" and not also re-enforcing them by being hands on in clinic. I'm more of a visual learner and it was always so helpful to learn about something in class, then revisit it by having a patient with that disorder or on the medications we were discussing. I knew it was going to be difficult going back, but somedays it's just really overwhelming! Luckily, my professors have been accommodating...I had a few questions that I had sent an email about, and my professor actually had me call him on his cell phone after 9pm just so he could make sure we weren't interrupted and so that all my questions were answered. He even left the conversation by saying that now that I have his cell phone number, I should use it whenever I need to in order to make sure I wasn't having any trouble. It was comforting to know that if I started to have any difficulties, I will be able to get a hold of him and that he's willing to help me.

Last week, we made a trip to Baltimore in order to meet up with Kristen and her mom. I met her during my first week of therapy at KKI and although she lives in Tennessee, we have kept in touch. We were supposed to meet up in August before my therapy ended, but she had to move her visit to Baltimore back a few weeks, so I was happy that we were still able to get together. I got there in the morning, rode the stim bike and got in the stander, met Vickie for a personal training appointment in the afternoon, then we all went to dinner. I was a little worried about how the bike would go since I hadn't done it in a few weeks, but it was still successful! And of course, Vickie pushed me has hard as she could. I don't really have a good set up at home to practice my sit-ups...I use a wedge during therapy since I'm not quite strong enough to go from completely laying on my back then sitting up and I don't have a good surface at home to work with. The bed is too soft, I obviously can't do it from my chair or on the couch, and I'm really not a fan of getting on the ground. Needless to say, I haven't been able to work on my sit-ups much. I was actually happy that core work was one of the things Vickie had planned for us. Last time we met, I had to use two wedges and a pillow behind my back in order to do sit-ups on the therapy mat (I also even held a ball so I could throw it forward and use that momentum to sit forward). Well, this time, she took the ball, the pillow AND one of the wedges away. I did 25 sit-ups with just one wedge! It was a big change and she was pretty impressed. She also even asked if I was getting hip flexors back because she could see my pelvis moving forward as I sat up.

It was good to see everyone at KKI, kind of like how I felt whenever I'd go into Magee and visit after day rehab. It's just a different feeling than being home...not just because everyone knows you, but everyone already either knows what happened (so you don't have to answer a million questions or have awkward conversations where people don't exactly know what to say to you) or they understand because they're part of the SCI community.

Meeting Kristen and her mom for dinner was so relaxing and refreshing. It reminds me of the good parts of this journey--the relationships. It's a different kind of friendship when instead of saying "I think I know what you're going through" someone can actually relate because they've BEEN there. You can share experiences and join together in the frustrations, but also rejoice together and be excited for each other on each accomplishment or milestone reached. I swear, overtime I see a post or update from one of my friends at KKI or Magee, I'm as excited for them as if it were myself. I know how hard these friends work and I'm just so thankful that I have been able to keep up with them throughout this journey.

September 10

I feel like since it's September and Spinal Cord awareness month, I need to do my part and try to educate people a little bit. Ive always studied biology in school, am in the medical profession, and have a nurse as a mother, but I don't really recall ever hearing the term "spinal cord injury." I mean, I knew what paralysis was and even knew that quadraplegic meant paralysis (or impairment) in four limbs versus paraplegia, which is impairment in two. But this last year has taught me that there's a whole different world out there with people of different disabilities, or like I'd rather say, adapt-abilities. People with all different stories and limitations. People that have given up and people that won't take "no" as an answer. 

You know, a few months (actually, almost 6 months) ago, Ali Stroker, a singer and actress that lives in NYC came to KKI to talk to the patients and families. She's a girl around my age that has been in a wheelchair and paraplegic her whole life because she was in a car accident as a really small child. She's been on Glee and in different Broadway productions, but I had never heard of her before. She was the first to graduate from NYU's theater department in a wheelchair and is one of the only wheelchair actresses. (And she's a big advocate of people with different abilities actually acting out those roles, not just anyone pretending to be in a wheelchair, etc.)

She talked to the audience with a lot of animation and a very big attitude, making a point of telling people that the chair was her version of normal. She talked about how offended she'd get if people asked when she was getting out of her chair or what happened. People even go as far to tell her she's "too pretty" to be in a wheelchair. She came across really defensive and accusatory and I remember wondering what the heck made her that way. Well, it didn't take too long before I figured it out. I'm not exaggerating when I say it's an everyday occurrence that people go out of their way to ask me how I'm doing...and I don't mean that it's a simple "how ya doing?" It's more like a "how are you doing because I noticed that wheelchair you're in?" All the time I have people ask "what happened" or "how long do you have to be in that?" I've had people say "did you get in an accident?" And I just smile and say "no, I got meningitis." It's the simplest answer and usually people just drop it, but only after they ask "are you getting better?" And I reply with "well, this time last year, I was paralyzed from the nose down and on a ventilator, so I think in doing much better." I've perfected the answer and have even learned to smile and laugh a little. I had one older woman say "isn't it awful to have to depend on something like that?" Then they always try to compare it to a broken foot or a hip surgery, like that's even remotely comparable. But I just smile and remind myself that people mean well. Some people just don't know what to say and I guess saying something is a better alternative to the stares I get everywhere I go. 

But it really makes me think...how do people handle these conversations when they aren't getting any better? Or if this is how they've been their whole lives? Like it's a totally normal thing, so how do they deal with people asking what's wrong when really nothing is "wrong." I've learned to deal with these situations and find hope because I'm constantly improving, but what if I weren't? How would you deal with these daily reminders from strangers that nothing is going to change? You wouldn't believe how bold some people are. My best advice is to treat everyone and anyone normal. Just smile. Be nice. Be polite. Don't make a big deal out of saying "do you need help?" Or draw unnecessary attention to someone unless you see them obviously struggling. Otherwise, people will ask for help. Trust me. It's a little degrading when people are always asking if you need help or acting like you can't do simple things by yourself. Most people will ask for help if they need it. If someone in a wheelchair drops their wallet and the contents fly all over the floor, then yes, a helping hand is appreciated. But if someone is getting in or out of their car, you don't need to ask if they need help. Chances are, they do that every day...several times a day.. and that's a little insulting that you don't think they can do it. 

But really, the biggest thing you can do is to just act the same as you do with any other human interaction. Just think about that next time you're around someone with a disability of any kind. We all have some sort of disability or will at some point in time, just remember that. 

September 7

I finally have things worked out with school and, of course, I already feel behind. I'm three lectures in and Dusty says I'm sounding like myself already- feeling like I have so much to do, so much to learn, and not enough time. But it's good. It's a love hate relationship. I hate feeling overwhelmed, but I love my schoolwork and I love learning...and I'm tired of taking time off! 

I'm still busy going to the gym and doing my own therapy. Im looking forward to starting swimming lessons in a few weeks because I've heard so many people talk about how good swimming laps was for their recovery (not to mention health and weightloss). 

I've also been busy organizing and promoting the fun run on October 15. So many people have reached out saying they want to sponsor or that they want to run...and those that can't make it are excited to buy shirts. And the shirts are going to be awesome!! Here's the design: 

They're going to be black with kelly greene writing (which is the color for spinal cord awareness). Then all the sponsors will be listed on the back. Everyone that signs up for the run gets one and those that can't make it, can still go to the run link, sign up, but the put a comment in the registration that they aren't running. Then we'll either figure out a way to meet up with people to give them their shirt, or we'll ship it to them. I'm hoping people from school, Magee and KKI will at least want shirts. I think it'll be a successful fundraiser and I can't wait to get the stim bike...I'm doing everything I can to stay active and do therapy, but there's only so much I can do to work my legs. And I was using the bike five days a week when I was in Baltimore, so this is a big change. 

Speaking of big changes, I've moved downstairs. We have a bedroom down there and it's where I was going to live before I got sick because I was going to do some rotations near home and live there to save money. Mom, Dad and James helped clean out the room the other weekend and I started to go through some of my belongings we packed up from school that are cluttering our garage. It's a long and slow process, but we're getting somewhere. I've been "living" down there by myself for a little over a week. I get myself ready and in bed, then up and ready in the morning. I even have my coffee maker set up. It's nice to have some of that independence again. Now we just need a bathroom set up down there! It hasn't been too bad because I just get up and go to the gym, so I shower after my workouts, but it would be nice to have one downstairs in case I wasn't going to the gym and to have a sink so someone doesn't have to bring my toothbrush down to me every night and every morning. Dusty's uncle came and looked at the basement and gave us some advice on where to put it to be most cost effective and to save the most space. Hopefully we can get a plumber over soon to double check a few things and then we can move forward with the process. 

So, yeah... Lots of changes and lots of things keeping me very busy! But I like being busy, so I'm definitely not complaining! 

September 6

I have to admit, I haven't blogged in a little while and it's kind of on purpose. With the anniversary of getting sick and having something specific each day that made it significant, I just tried to stay busy and not think about all of that. I felt like if I sat down and started writing, I'd have to confront my feelings about everything and that's just not something I was either willing or ready to do. I was busy making new memories to help make up for the bad ones. But that doesn't mean I was successful at not being emotional here and there. 

My friends, Brittany and Aubrey and their mom took us to see Scotty McCreery at the county fair (with a meet and greet!!) we got pictures and got to see a great show (and I got a hug! Haha) so instead of the 31st being the last day I was with my roommates and at my house in Philly before Dusty drove to get me and bring me home, it was the day I met Scotty. Sounds like a better memory, doesn't it? 

Instead of September 4 being the last day I was moving my legs and the day I was put on the ventilator, it was the day Dusty and I celebrated our four year anniversary with friends at a vineyard, listening to some of my other friends play music. Then Dusty and I went grocery shopping and cooked together, like we used to. Me as the organizer and cook in the kitchen and him on the grill. 

And lastly, instead of September 5th being the day I was sedated and flown to UVA, it was the day we went to the Nationals game and drove around trying to find a place to eat on our way home. We decided we wanted chick fil a (and it wasn't even Sunday!!) but, it was Labor Day, al of course they were closed when we got there. Then we decided that salad from McDonalds wouldn't be too bad, but as soon as we got there, we found out that it must've closed down sometime in the last few months. And then, still on that salad kick, I thought we could get one to go from Harris Teeter, but Dusty pointed out that they were probably closing down the salad bar since it was almost 8:00. It was quite the adventure...it was getting late and I was getting hungry (or I guess you could say "hangry.") We finally got some type of Latin American food (which was probably the only place open after 8 on Labor Day.) It didn't disappoint and we made it home before it got too late. If nothing else, it's kind of a funny memory.