November 16

It's been a little while since I've written a post, so I obviously have a lot to catch everyone up on!

We had the holiday bazaar last weekend and it was a big success. There were a lot of vendors and I made a lot of contacts/met a lot of people. The raffles and bake sale were both successful additions. I really appreciated all the effort my friend Brittany and her family put into it. I think one of the highlights of the day was actually talking to Brittany's mom. Their family owns White House Apples, a business based in Winchester (and a few other local businesses) and they want me to be the speaker at their Christmas company banquet in December! I was so flattered. I've spoken at a few different things like at church or YoungLife banquets in the past, so it's not completely new to me, but I'm still already nervous! I think it'll be easier than I think though, because I'll just be talking about the past year and what I've overcome, etc. and I know it's much easier to talk about yourself and experiences than to try to write a speak and memorize it. But I'm already starting to think about what I want to say and wanting to start writing it!

As far as school goes, it's still stressful! Last week, I created a proctorware account, so that I can take exams from home. It's basically a website that connects me with someone online that can watch me from my webcam and close out of any open documents, etc on my computer in order for me to take the exam from the comfort of my own living room. Creating the account was no big deal, but my professors had to coordinate getting the exam online, which required the professor sending it to someone in charge of the whole course, who then sent it to IT, who were the only ones able to get it uploaded to the website I needed to use. Well, I thought everything was in order and got connected with a proctor online, let them close out of everything on my computer, take a picture of me and my ID, but as soon as I read the first question, I knew something was wrong. It was the final exam instead of the midterm! I had to get the proctor to close out of the exam before I saw anything else and then wait the whole weekend before finally taking it on Monday. I was so over studying for it, so I was happy with the 86 I received. Not too bad to get a B on my first exam in over a year, especially considering the circumstances and that for the first time in my life, I'm not just "doing school." I'm doing therapy and working out and running here or there, with each day seeming somehow more chaotic than the last. Anyways, now that I know the final is already uploaded, I'm going to start studying that material so I can take it this week. Then I'd be done with that class! I think it'll feel good to just focus on one course and start crossing them off my "to do" list.

Speaking of school, I had to go to Philly this week because the parts we ordered for my wheelchair finally arrived. This included a new backrest and seat cushion. My old backrest was really tall and had "laterals" that held me in place because when I first ordered my chair, I needed all the help I could get since my core was so weak. I no longer need that much support and the height of it was really getting in my way when I was pushing myself. My old seat cushion was at least 4 inches thick, which really prevented me from being able to pull up to many surfaces, like tables in public. A thinner seat cushion would make transferring and pulling up to different surfaces way easier, not to mention how much lighter it would be! I swear the cushion I had was about ten pounds! We picked both of the new pieces up today and it is already making a world of difference. The cushion is so much more comfortable and lighter, and the back rest puts me in a much better position--what my therapists call an "anterior pelvic tilt." It makes me sit much straighter up and just pushes my hips forward instead of slouching back (which is unfortunately way more comfortable even though it's so much worse for my body!)

I got to visit with everyone at the Riverfront, including my friend Josh, who I had met when I was in inpatient, then got to continue therapy with at outpatient. We've been in contact on and off over the past year, because he's actually the one that convinced me to do the surf event back in August. He had participated when Life Rolls On was in New Jersey and told me I needed to go to Virginia Beach because it was such an amazing experience. (Josh is in his early 30s and has a cervical injury from jumping off a cliff into water at a bachelor party last July, leaving him quadriplegic). He's doing so great though! He looks so much stronger and healthier than the last time I saw him and I really enjoyed catching up with him. I'm also really trying to convince him to look at KKI and at least do the two week boot camp because I think he'd benefit so much from it. I also went to the inpatient site so I could see Steph, Natalie and Tracy (all my therapists from when I was in the hospital). I feel like I just couldn't make a trip all the way to Philly and not see them! I had to catch them up on my progress and share some videos, which they love to see and be kept in the loop on, especially considering how far I've come since I first started working with them. We joked today with Natalie about how I'm going to have to include some experiences I had with her in my speech next month, like how I remember her making me go to the group dinning room for breakfast so that I could feed myself...I was the first one there and the last one to leave (and I was still starving after the two hours we spent there). That was back when feeding myself was the "hardest thing I've ever done." If that's not motivating, then I don't know what is.

I also went by the eye clinic yesterday because I had to see Molly. She was in Georgia for her first rotation, then Florida for her second, and I think it's been six months (or more) since I've seen my best friend! It was a short visit because clinic was really busy, but I got to say a quick hi to her, some of my other classmates, and a few of my professors. It's so bittersweet being back in places like that. I know if I were there every day, working long hours and dealing with cranky patients, I'd have things to complain about like all my friends are doing now, but it puts things into perspective...You can complain about anything, but what you're complaining about might be what someone else would give anything to have. Mom and I left clinic and got to meet Rachel for dinner, which was also such a good reunion. I loved being able to hear about her different rotations and wedding planning (her wedding is over my birthday weekend next year!) I'm planning to stop by campus to meet with the professor in charge of the Office of Academic Success tomorrow morning (it's like the disabilities office at school). Nothing is really wrong, but I just want to touch base with him and kind of keep that contact...You know, just keep remind everyone I'm still here so they don't forget me just because I'm all the way in Virginia.

Lastly, for the past four weeks, I've been going to Shenandoah every Monday to be a patient for their PT lab. It's only an hour long, but we get so much accomplished. I work with three students (who are seriously the sweetest girls ever, when I was telling Molly about the labs, I told her that "they're the type of girls we would've been friends with." haha) Each girl was supposed to pick a specific goal for me and we spend the hour doing different treatments and exercises to try to eventually reach that goal by our last week. The different goals are: being able to do a bridge (which requires a lot of core and glue strength), scooting (so that I can eventually bump up and down stairs on my butt), and transferring uneven surfaces (which ties in with the last goal, but would also help with things like going from the ground to getting back up in my chair). I realize none of these things are going to actually be completed 100% during the time we're together, but things are getting better weekly! They even told me this week that they get so excited to work with me each Monday because they're eager to see what has changed since the last time they saw me. It's crazy to think about someone noticing improvement on a weekly basis. The professor actually told my mom that she's happy the students are working with a patient like me, because you don't get to see many neuro patients like that..not many make improvements that quickly and as a therapist, it's so exciting, so she's really thankful the students get to experience it while in school. I think it's one of those things that just makes you love your job more...like if I were working with a patient and doing vision therapy and then they no longer had double vision, or the simple gratitude a patient expresses after getting their first pair of glasses. Anything that shows you that you were successful and made a difference in your patient's daily routine.

I have gradually improved from the ground onto a two inch mat, then four, then five, and this week, I went from the ground up onto a mat SIX inches high! As if that wasn't enough improvement, I also got onto my stomach and into quadraped (on all fours, like what Natalie and Steph used to make me to..and I HATED) ALL BY MYSELF. That's right, I was laying on my stomach and pushed myself up onto my hands and knees without anyone helping me. That's the video I had to show everyone at Magee today...and they were so impressed! I think I needed to see the video myself, to be assured that no one was actually touching me.

So...it's been a crazy couple weeks, but lot of good updates and improvements!

November 2

I got a crazy phone call a few weeks ago. A friend from freshman year of college at Bridgewater called me out of the blue. I'm ashamed to say that although we were extremely close freshman year, we completely lost touch after she transferred. I hate when that happens. Saying that you'll keep up with people is so much easier than actually doing it and I'm afraid I've experienced more and more of that in this past year as I've worked on my recovery and my friends have moved on with their schooling, work, families, and life in general. But anyways, Kat called me because she's been following my story and progress since I first got sick. She told me about how in 2013, she fell off her horse and suffered a spinal cord injury. She has since made a full recovery, but started a business with horse and human products called "Benefab" products by SoreNoMore. The technology in their products helped her a lot in her own recovery and who would have thought that almost seven years later, we would be reunited because we have both been introduced to the spinal cord injury community? You can learn more about her story and her products here:

http://www.benefabproducts.com/the-benefab-story/

She had read in my blog about the equipment I needed for therapy in order to stay at home and continue with my courses for school. She knew that I was working on several fundraisers and thought that she could be of some help. Since her personal experience, she has donated a portion of her profits to SCI rehabilitation, but decided that she wanted to try something a little bit different. She wanted to get more personal and share an individual's SCI story for a period of time, starting with me. So, I'm lucky enough to announce that this Holiday Season, she is donating 10% of online sales at both websites completely to me: www.benefabproducts.com and www.stoptheache.com 

There's a really nice write up about me on their blog and I'm just so thankful that she reached out to me, both because we've been able to reconnect and because she's already been such a big help. So, if you get a chance, look at the websites and products. I have one of the blankets and I absolutely love it.

http://www.benefabproducts.com/kellys-journey-our-small-business-her-outcome/

October 31

I have to admit that not all days are great days. It's easy to get caught up in social media and a specific "image" we want people to see. People only post the happy pictures and the fun adventures they're having on Facebook; you don't see their struggles or problems because who would want to make those public? I guess I'm a little guilty of this too, even in my blog. I try to be honest and vulnerable. I've admitted my own struggles throughout this journey, but I don't think I've opened up about some of that in a little while. I try to focus on the high points, the laughter, and the perfect pictures, but that's only a small portion of my life these days. I still have those moments when I ask God "why me?" or try to figure out what the "bigger plan" might be. I mean, there's got to be something bigger than this...this has to be preparing me for something larger than what I'm capable of imagining. I frequently get frustrated about little things...or at least things I think are little and should be simple, like washing the dishes. And when I can't reach the soap or the dial to turn off the water, I can't fight back the tears. Stupid, right? Some days I just get so frustrated with tasks that should take a few minutes get dragged out to triple that amount of time. At the end of the day, I'm even more frustrated that so much of my time gets wasted, especially these days when every minute is valuable and needs to be put towards therapy, working out or my mounds of homework.

I feel bad that it's usually Dusty that is present for all these minor "break downs." I mean, we only get so much time together due to his work and both of us dealing with school, so it's a shame. It's just easier to be vulnerable in front of him because he handles it the best. He always knows what to say--the perfect balance between being sympathetic and telling me to "get a grip." And he never makes it about himself, which is the best part. I don't know why we all have a tendency to bring up or own problems when someone opens up about their troubles. I've done it. It's almost like "you think you've got it bad? Well guess what I've been dealing with."

I'm trying to learn from all of this and become a better person from it. I'm taking how I feel and what I like or don't like about how people treat me and taking a note of it so that I can be that way with others. I read a quote today that said "if it's an experience that you learned something from, then it was worth it." I'm trying to pay attention to everything I'm learning so that I can say this was all worth it.

October 28

Dusty and I went to Blacksburg for a wedding last weekend. The groom was one of his friends growing up and all of his other friends were coming with their girlfriends. We found out about it a long time ago (like when I was still in the hospital), but heard that it was going to be on a farm and nothing about that sounded "accessible." (And I definitely didn't want to ask and put another thing on the bride's plate). I told Dusty to just go and have a good time and I made plans to go to my college's homecoming. Well, when my plans started to fall through, the other girlfriends looked into the wedding details a little closer. As the weekend approached, I found myself wanting to go more and more...why would I say no to something I wouldn't have even thought twice about missing before I got sick? Turns out, the bride and groom had even looked into accessible venues with me in mind, so I'm even more thankful it worked out for me to go. 

I feel like so often, people don't understand that before I go anywhere, I have to plan ahead...I have to make sure there's parking, no stairs to get into whatever building I'm going to, that there actually is a wheelchair accessible bathroom, etc. So when someone actually takes that into consideration, it means so much to me. Hell, even our airbnb was accessible! I mean, yeah, I got bumped up a flight of stairs, but only because Dusty's friends were kind enough to give us the master bedroom on the upstairs level. The whole weekend just seemed so...normal. And that doesn't happen too often anymore. 

I got to get ready with the girls while the guys did...who even knows what. And of course, we got to twist our boyfriends arms into taking tons of pictures. Our house was only a couple miles away from the venue, so like usual, we were cutting it close on time. We got there and pretty much everyone was already sitting outside and ready for the ceremony to begin. Dusty and I had to park and navigate through a gravel parking lot (which is REALLY DIFFICULT) before taking our spots. We were having even more trouble than usual, getting those wheels to move in the rocks. Finally, we get all the way to the other side of the lot before Dusty (in his not so quite voice) says "are you serious?! You had one tire locked this whole time!" And that is how everyone knew we had arrived. 

It was a beautiful wedding and it was incredibly fun...lots of catching up with different people and plenty of dancing. Dusty and I are always on the dance floor at weddings. I can't even tell you how many perfect wedding pictures we have of us dancing. And although we still made it out for a good number of songs, I was still fighting back a little emotion, knowing that it just wasn't the same.  How do you slow dance in a wheelchair? The second to last song was a slow one and Dusty and I found ourselves on the corner of the dance floor. Everyone was saying their goodbyes or trying to catch the last couple songs before heading home. Dusty and I were just talking because we hadn't really been able to do much when the DJ played a slower song. When he asked me if I wanted to dance, I just kind of laughed. But he didn't. He said "come on, let's try it." And within a few seconds he had helped me stand up so we could dance. My back was to everyone, so I didn't really know what everyone was up to, but I also really wasn't concerned. For a few minutes, it was just us...dancing like we always have. When the song ended, I sat back down and was swept away by friends to catch the last fast song. At the end of the night, Dusty said he had so many people come up to him saying how sweet our dance was and everyone had teared up or taken pictures. I thought he was being dramatic because he hates having much attention on himself, but then I had some friends send me pictures. I was so happy someone was able to capture that moment for us. One second I'm bummed I can't dance like I used to and the next, Dusty shows me that I can and that there's no such thing as "can't." 

October 19

It just occurred to me that I never made a post about my call from Dr. Pardo at Hopkins a few weeks ago. I don't know how this escaped me, because it was probably the best news I've ever received. Let me back up a little bit...I saw Dr. Pardo at the end of July and he confirmed by diagnosis of ADEM. He also ran a few tests and sent them to the Mayo Clinic to be sure that nothing else was going on, like another auto immune disease since ADEM is auto immune in nature and my mom's side of the family has a large history of those disorders. Everything came back negative (thankfully), but he wanted me to get several MRI scans to check the status of everything and the extent of the damage done. I had to go two separate days for my MRIs. They had to be with and without contrast of my brain and entire spinal cord. Basically a full body scan...and they took forever. I had mixed feelings about it too. While I was excited to see how things look, I found myself really anxious. I thought I was fine with all of it and ready to get some more answers, but as the days and weeks passed following the scans, I was starting to think that maybe not knowing anything might be better. What if there was bad news? Maybe no news was good news? I'd rather be oblivious than get a poor prognosis.

Dr. Pardo had been in Columbia, working with physicians and researchers on the Zika virus, so it took what seemed like months before he got back to me. But almost four weeks later, I got a phone call at almost 8 at night. He apologized for taking so long, but said he reviewed my scans. Then did it again...and then repeated it again. The last MRI I had was at the beginning of October, before I went to Magee. And at that point, each MRI I got was shockingly worse than the one before it. At one point, the doctor even reported that I had a total infarct at T2, basically meaning that I had a complete and irrecoverable injury. Now, we know this isn't true because Dr. Recio determined that I had an incomplete injury and that the injury level was below T2, at T5. Since then, I've also received good news in that my ASIA level changed from B to C while at KKI as I started to get some movement in my lower extremities.

He continued by admitting that he fully expected to see brain damage in the images of my brain. Judging by the previous pictures and the extent of both the meningitis and ADEM flare, it would not have been a surprise at all. HOWEVER, there was absolutely nothing wrong with those pictures. There were some "patchy" areas, like in the area of my hypothalamus, which is the area that controls temperature. This makes sense because I'm still having some temperature problems, like sweating at the wrong times or feeling cold ALL THE TIME. He said those little areas are fully recoverable and that he didn't foresee any problems in the future.  Also, continuing with the scans, the rest of the spinal cord was FINE. Let me repeat that...IT WAS FINE! More than fine, actually. He said I only had some atrophy, which he would describe as "weakness," but we pretty much knew that already based on the current circumstances. Apparently, all I need is to continue therapy to get stronger and keep my vitamin P--aka, positive attitude.

I was overwhelmed with this news. Absolutely flooded with emotion. I've continued to be positive throughout this whole journey, but mostly because that's all I could do. What would being upset or worrying do for me? But to get the news that things really will be okay just reignited that spark of determination. So often, Dusty and I talk about the future and all our plans and things we want to accomplish and just hearing this news gave me such peace. It's not just talk. We really will be able to do anything. I mean, even if I didn't get back to 100%, I know he's still by my side and nothing is really holding us back, but to know that this really is just an obstacle that is only making us stronger truly leaves me speechless.

I'm currently reading Laura Story's book called "When God Doesn't Fix It." Mrs. Stile sent it to me and it has been such a blessing. (Which is kind of funny because Laura Story has a hit song called "blessings," but anyways..) She tells her own story about how she dealt with her husband having a brain tumor- what happened and how she handled it, both personally and spiritually. While my story is very different, there are so many things that I can relate to. She ends each chapter with a "myth" and a "truth." Basically, what she thought was true or what she previously believed, and then what she has learned or what God was teaching her. I'm only a few chapters in, but so far, the "myths" and "truths" she has talked about so far include:

Myth: Trials are a curse.
Truth: Trials are an opportunity.
She prayed "though we are on a scary new adventure and I have no idea where it will take us, I am willing to go." I believe I am your masterpiece, not because I feel it but because you say it. Though I can obsess about my deficiencies and insecurities, I know you designed me perfectly for the good works you set before me. Help me in this time of trial to follow in your footsteps, so that I may complete those works for your glory."

Myth: God's primary desire is to fix broken things.
Truth: God's primary desire is to fix my broken relationship with him.
More than healing us physically, God wants my relationship with him to be healthy. Jesus came to heal, but he doesn't always fix the broken things I want fixed. But if I allow him to, God will always heal my broken relationship with him. Understanding that doesn't lessen our desires to be healthy, but it does change everything else.

Myth: Salvation is gained by the things I do.
Truth: Salvation is gained by what Jesus did for me.
I think that's pretty self explanatory.

Myth: When things look dark, God is gone.
Truth: When things look dark, God's light shines the brightest.
My favorite thing from this chapter was when Laura was talking about James 1:2-4 ("Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.") How do you count the trials of your life as joy? She said "We all want to persevere in our faith. We want our faith to be 'perfect and complete.' But who wants to go through trials to make it happen? The problem is, perseverance doesn't come from listening to a sermon. There is no inspirational bestseller we can read that will help us plumb the depths of our faith. We don't become perfect and complete by sitting in church. We learn who he really is during the most desperate part of our trials. It's about meeting God where and when we need him most. Sure, our faith grows through reading Scripture and praying, but just as we don't know the strength of our body until we test it in a physical challenge, our faith isn't perfected until it's been tested in a spiritual challenge." She then made a comment about how all this doesn't necessarily mean that we should do cartwheels when bad things happen, but to simply hold onto God when these trials happen. It's an opportunity for us to look in the dark for those less obvious blessings and mercies of God that we might overlook in the light. When we do, God show us things that we otherwise might miss because his light is the brightest in the dark.

October 17

I could not have asked for a better turn out Saturday. We got together on Thursday of last week in order to organize everything and assemble the bags for each runner, but people were still signing up on Friday night and some people even showed up on Saturday morning to sign up in person. It was so great seeing everyone and I was overwhelmed by all the support everyone showed me. Dusty is always telling me "everyone loves you, Kel," but I really felt it that morning.

First of all, my friends, Caitlin and Christin, came in for the weekend. They drove all the way from Philly and even switched clinic shifts in order to make it. Not only was it great to be able to catch up with them, but they helped so much with the race and getting things in order for the event and our get together at the house afterwards. We were up making posters until almost midnight!

It was such a beautiful morning with the sun shining and a cool fall breeze. I spent the whole first hour at the park just greeting people and giving out like a hundred hugs, haha. All of my biggest supporters, some people I hadn't seen in a long time, and then some people I've never even met all came out. At the end of the event, people were already asking if we were planning to do it again next year. I hadn't really thought about it, but that's a great idea! I feel like even if it isn't to raise money for me or anything that I need, it would be really great to still have a "kel's fun run" to support spinal cord injuries or something like that. Wouldn't it be awesome to do it every year, making it a more well known event, and make a difference for someone else?

Dusty gave a nice opening speech (while standing on the back of a pick up truck). And I got to blow the blow horn to start both the 5K and the fun run races. Dusty pushed me and we started off the fun run, then Christin took over and pushed me the rest of the way. She was even running while pushing me so that we could be at the end of the race to greet the majority of people finishing.

John at the Butcher Station made amazing power bars and muffins. Mackintosh donated apples. And Costco gave us waters to distribute. We had a table that said "Just like the quote says, this journey is full of ups and downs. Please write a note of encouragement for Kelly to read during those 'down' times." I really hope I don't have that many bad days, but I'm glad I now have all these cards to read to turn those days around and put a smile on my face.

People were still coming up to me at the end of the race. People came out for their first 5K, a friend hadn't ran since her double knee replacement, a friend was there on his birthday, a bunch of people from my high school and college came, and a couple celebrated their 25th wedding anniversary by running their first 5K together. A girl I knew from Bridgewater even came and brought her parents. She came up to me afterwards to tell me that she didn't want to get emotional, but felt she had to tell me about how she always looked up to me in college since I was a year ahead of her and also a biology major, but that she admired me even more now. Let me tell you, that almost made me emotional! It was so kind.

Afterwards, we had people over to our house just so we were able to talk to everyone a little more and relax. And later that afternoon, the girls and I went down to Bridgewater for the football game. It wasn't a very good game, but it was nice to take a little road trip together, show them my school, and continue to tailgate.

It was such a great and successful weekend (the even ended with a Redskins win against the Eagles!!!) And I'm so excited to say that we raised enough money for the stim bike and hopefully it'll be here by the end of the month!!!

October 13

I've had a lot of people tell me they've had dreams about me walking over the past year. I've kept a list in my phone just to keep track of it all. The messages I get from people about their dreams have been hilarious. I wrote about it a few months ago, but my favorite is the dream Molly and I had. When I was in the ICU, I woke up and Mom told me that I had to get into that stupid chair they made me get out of bed and sit in. It was back when I had absolutely no core strength or movement, so doing anything but laying in bed took a lot of my energy.  It was back when anything I did besides laying in bed was "the hardest thing I've ever done." Breathing, sitting up,  and feeding myself were all dreaded tasks. I know, something that sounds so simple and common was something I struggled with every single day. Anyways, I told Mom (more like "mouthed" it since I still hadn't regained my voice) that I wasn't getting in that chair because I was exhausted. I said I had walked around the nurses station all night with Molly and I didn't want to do anything but sleep more. She laughed and asked me what in the world I was talking about and I explained "Molly and I walked around, laughing and talking all night about how we should go back to school for physical therapy instead of optometry because they barely have to do anything." I know now that this isn't at all the case. I was only feeling that was because my PT in the ICU only visited twice a week and mostly just stopped in and left, without doing anything with me. Looking back, I realize that his job was more to teach my family how to do different exercises and to help me stretch to keep range of motion, but in my almost comatose state, I didn't realize that at the time.

Everyone just kind of laughed it off and ignored my nonsense dream until Molly called that evening. She said "you'll never believe what I dreamed about last night! We were walking around outside your hospital room and laughing about how we should have gone to PT school." Seriously. And if that wasn't crazy enough, when Molly told her mom about the dream, her mom said she had the same dream a week prior to that. Every since then, I take these dreams pretty seriously. I know some are laughable, but some really might mean something. Anyways, I've listened to everyone else's dreams but hadn't really had any of my own until recently. Last week, I dreamt that I was at the gym getting ready, and while I was in the locker room, mom went to get the car but took my wheelchair with her! I was so mad...what was I supposed to do? How was I going to get outside? I took at that frustration and WALKED out to the car, just so I could tell her how mad I was, haha. I had a gait deficit and remember thinking about how hard it was to walk out there, but I did it. Mom joked that if that's all she takes, then she's going to take away the chair next time we're at the gym and see what happens, haha.

Then, last night, I had another dream. This time, it was Dad that I was mad at (I see a trending theme here..) This one was actually the most realistic dream, too. Like I can totally see this happening. I was downstairs in my room and Dad had packed so many random things in my room that I couldn't get around in the wheelchair. He has this habit of kind of hoarding things we don't need and whenever he doesn't know where something goes, it somehow ends up in my room. It's always been like this. So, I was in my room, surrounded by all the random stuff Dad put in there, I couldn't move around, so I decided to just get up and walk around the room. It's so believable too, haha! I told Dusty he's next.