August 29

Today's the day I've kind of been dreading. One year ago, it was the day I woke up with the worst headache ever and the last day I was in clinic, seeing patients on my own. The day everything started to fall apart. I know a day is just a number on a calendar and I hate that it has a looming significance. It needs to be what I make it, not what the past has made it. 

I have a friend who got a divorce a while ago and just found out that her adoption has gone through and she is going to become a mom in a couple months. We were talking about throwing her a baby shower and she said she wanted to have it at the church where she got married. Everyone looked at her like she was crazy. Why would you want to have a baby shower- something that symbolizes happiness and new beginnings- in a place where you got married to someone you are no longer with? She made a good point and said something I'll never forget- "I need to have it there to replace bad memories with good ones." It was then that I decided not to let anything- especially this next week bring me down just because of the date of what happened a year ago. Each day is going to be significant for the next couple weeks for one reason or another. The day I went to the hospital and didn't leave. The day I got admitted. The day I got into bed on my own and never got back out on my own two feet. The day I was flown to UVA. The day I crashed and was put on a ventilator. But...I can make something positive and something memorable happen on those days this year to cover up the bad memories. It's my mission this week and in the weeks to come. I wanted to say that September is the worst month. It's my unlucky month. But maybe I can turn into just the opposite. 

August 26

It's been another busy week home. I finally figured out what's going on with my classes...funny story, actually. I messaged my professor Tuesday and asked her if I was supposed to be completing any assignments or listening to lectures and she replied with "classes just started yesterday, silly." Haha, but they know me and I've been checking online just about every hour! I was under the impression that all the lectures were already recorded and I'd work at my own pace, but I actually have to wait until they happen. They sent me the schedules and I'm enrolled in two classes- one with the honors students, and one with the traditional program. The first lectures for those classes aren't even until next Thursday and Friday. 

So...I'm spending my time figuring out my therapy/exercise schedule. And it's going so well! First of all, I met with a trainer at the gym who showed me how to use and set up some equipment. I've always gone to the gym and I know what I'm doing, but I wanted to make sure I could set things up on my own and I wanted to know I was targeting all the major muscles groups. (I need to make sure I have a lot of progress to show the therapists when I return in January!)

The gym staff have been so incredible and friendly. They already know me by name (and this place is hugeee). One guy already asked if I'd be interested in an adaptive piece of equipment that would allow me to use the rowing machine. Plus, they're looking into getting an adjustable exercise mat, like I've used in therapy, and they're trying to get another arm bike so I can possibly participate in spin classes! 

The pool is pretty packed with classes, but I've found some time to make it in between what is scheduled. I can stand at the edge of the pool on my own and it's already better than it was Monday. I can't do it for long because my legs fatigue, but I'm able to pull my hips in and keep my knees straight. 

My swimming isn't great, but at least it looks like swimming now. I'm looking into taking a couple swimming lessons just because I think it'd be helpful to get some tips from someone of how to get the most out of it. 

A friend from Bridgewater messaged me this week because she's in PT school at Shenandoah, right in town. They have a course on neurophysiology or something and like to work with local patients. She reached out to me to see if I was interested, which basically means free PT and benefits of that sort every Monday in October and November. I'm looking forward to seeing what they have in store and being able to reconnect with this friend. 

Lastly, my art therapist from Magee, Julie, emailed me to tell me that the committee selected a piece of my art to be featured on their holiday cards! I was only one of four selected! She's going to get me the information on how to order the cards because I'm sure some family and friends will want copies. See, maybe I am an artist after all. 

August 21

The last time I got to spend Dusty's birthday with him was his 21st. Only a few weeks after we met. We joke about it all the time too, because it was me, his family and two of his friends at a restaurant and bar downtown. He was going on and on about how his birthday is the worst time of year because even growing up, no one was really around to celebrate summer birthdays and he usually had football practice. The kicker was that his 21st was on a Monday. And all night we heard how "Monday August 20th is the worst day of the year." (Mind you, my 21st was three weeks before on Monday July 30, but that's besides the point.)

We actually got to spend all weekend together and got to celebrate his birthday. Nothing big by any means, but it was nice to be together. We actually got a drink and went out to the property he bought, just sitting there and talking. Simple things like that mean the most to me and I think we should take the time to enjoy moments like that. 

My classes were supposed to open up online yesterday, but I haven't seen anything appear on blackboard. I've emailed my professors several times, so hopefully they'll get annoyed enough that they do something soon haha. So instead of doing schoolwork like I had planned to do, I've been working out. I went to the indoor city pool yesterday to orient myself there and was really impressed with all the equipment they have, but it felt great to be back at my regular gym and pool this morning. We left the house at like 7:30, so the gym wasn't too crowded. I was surprised by how much things have changed in what I'm able to do. I was standing at the end of the pool and able to straighten my own legs to stand up straight. They fatigued fairly quickly, but I still like standing that straight helps to train the lower ab and back muscles so hopefully I won't need much assistance standing on land in the future.

Afterwards, I got to try a little bit of the new equipment! The arm bike is so nice and I couldn't believe it, but I did 30 minutes and a total of 4miles! I think it'll be really great to get at least 30 minutes of cardio each day. There's so much I can work on and so many different muscles to strengthen that I'm working on developing a schedule. That way I can track my progress and not skip over any muscle groups. I actually have an appointment with a trainer on Thursday to develop a workout plan and discover which pieces of equipment I can use on my own at the gym. 

August 19

What a great week back home. Granted, I had three MRI scans, a million emails and lots of errands on my to do list, but it felt good to get some of those things done. I rejoined my gym, the one with a pool because I'm going to attempt to swim again. Last time I tried without a therapist, I looked like a drowning dog, so hopefully this goes better. I have an appointment Monday with a therapist in town to evaluate my performance in the pool so I can use the city pool as well as the one at the gym. It'll just be nice to have two options in case one isn't available due to classes or events. Plus, they are different water depths. I can do more core and sitting things in the gym pool, but can build a water walker to walk in the deeper city pool. (And I'm sure I'll like the warmer temperatures of the city pool as it starts to get colder outside!) When I renewed my membership, they said I get four trainer appointments, so I'm excited to have someone show me what equipment I can use and what all I'll be able to do on my own. And the best part? Dusty's dad heard me talking about how I'll need a gym membership when I come back home and is going to pay for it. It's such a nice gesture and I'm looking forward to it because the place has pretty much everything I need. The pool, weights, a cardio machine I can strap my legs into and use on my own, and arm bikes. (And they just got all new equipment just last week!) Now, if they'd just get a stim bike and stander, I'd be all set. 

August 14

I'm So...surfing and the Life Rolls On event might be in my top ten favorite things I've ever done..and that's saying a lot because I've been bungee jumping, sky diving and out of the country. I seriously laughed when therapists tried to get me to go surfing. I'm probably about the least athletic person out there and having new disabilities and a wheelchair to overcome doesn't make me any more athletic. But I'm glad I've learned to go with the flow and take more chances. I'm already looking into all the other adaptive sports available out there.

I love meeting new people and hearing their stories. It's motivational to see what others are capable of, regardless of their injury or disability. And I love learning about the opportunities available out there and being educated on the world of SCIs or wheelchairs.

First of all, Mom and I picked James up in DC to join us for the weekend, which made me really happy. Now that we're older, it isn't often that our whole family gets to do things together and I was excited that this was something that brought us all together (we actually even said that we'd love to make this a yearly tradition- even when I'm no longer in a wheelchair).

Friday night was a fundraiser dinner with a cash bar, raffles, silent auction items, and an introduction to the event. There was a musician that played and sang all evening as well and he was outstanding (and only 21!) And Jesse was there...and I was a bit star-struck, haha. Jesse Billauer was months away from becoming a professional surfer when an accident in the ocean paralyzed him- a C5/6 injury. (Which means he even has poor control of his arms and hands and is considered a quadriplegic). The accident was almost 20 years ago and about 15 years ago, he created the even Life Rolls On for all ages and all abilities to get people back in the water. He wanted everyone to feel "free" and that's really only something you can experience in the water without gravity. Jesse is a motivational speaker and also a gold medal adaptive surfer. (Surfing is going to be in the olympics in 2020 and hopefully Jesse will make it!)

Dad and Dusty got in late Friday night and we were all up early Saturday morning. It was extremely hot, but like me, everyone with a spinal cord injury was loving being warm and outside. My biggest fear had been how cold the water was going to be, but it was in the 80s and I LOVED IT. I got talking to a lot of different people of all ages, asking me questions about my injury and experiences. It's really interesting to hear everyone's stories and their take on different things. I met a girl who was 19 and in a car accident on Christmas Eve when she was home from college and we talked about going back to school and various things. I talked to a guy who went to KKI and surfing would be the first time he was back in the ocean since his diving accident over five years ago. A lady told me about her experience participating in stem cell research. I mean, the list goes on and on and it's crazy the stories I've heard.

Right after I got in line and finished registering/signing in, I went to the ramp to access the beach and saw someone I knew from home. What are the chances of that? Lillie is from Winchester and we led Wildlife together and went to YoungLife in high school. She recently started PT school and moved to VA Beach. Apparently, she had heard I was going to the event and asked some classmates about it, who told her they were already volunteering and asked her to tag along.

When we got to the beach, Dusty (not so quietly) said "so is this something where we can cheer for you and heckle or boo others?" That made this guy standing nearby laugh and come over to introduce himself. He was at the event because he represents a company called "Sand rider," who makes beach chairs. He actually helped design them because his father was in a motorcycle accident about ten years ago. the chairs were awesome. They were like the one I used in Ocean City, but a 100x better, because they were completely adjustable and could come apart/disassemble.

In order to surf, I go into one of those Sand Rider chairs and they pushed me down to the beach. There were a ton of different teams and each team wore the same color in order to be better organized. Of course, I was happy that I was on team pink. There were so many volunteers (like 200!!) that they had to turn people away. There were also over 100 surfers, which is the most they've had for the event in VA Beach. The volunteers asked each surfer what their capabilities were and how they wanted to get on the board, then asked how comfortable they were with the water and decided if someone should get on the back of the board with them. I got on my stomach and they took me out to deeper water, which they assured me really wasn't that deep because the people in the water were still able to stand. I told them I was pretty comfortable in the water, especially with the life vest on, but that I'd never done anything like that before. They said I didn't need anyone to ride on the board with me unless I wanted someone to, so I took the chance and said I'd go solo. They got me out farther, turned around and helped me catch a wave before they let go. I rode it all the way into the shore! It was surprisingly easy. All I had to do was hold on, lift my head up, and shift my weight from side to side. I didn't think it was difficult at all, but everyone kept talking about how great I was at it. (Maybe I have a hidden talent?) There was something about that feeling of being in the water and the thrill of trying something new...I asked if they'd take me out further and catch a bigger wave. The guys were like "there you go!" and "alright, we've got a daredevil." That was when I realized I'd felt like that before...it's similar to how I felt on that bridge, about to jump and bungee for the first time. Or when I was in that plane and the guy asked me if I was ready to "fly." It was freeing and exciting and honestly, so hard to describe. Words really just won't do it justice. I caught about five more waves, only fell once, and rode every single one all the way in to the shore.

After surfing, I saw the guy we had met when we first arrived (the guy with the beach chairs). He was with an older man in a wheelchair and I introduced myself, asking if this was his dad. He was and his name was Bill...Bill and I talked for a long time. About EVERYTHING. I actually need to send him an email as soon as I'm done with this post. He's part of SCI recreational activities and said they have applications where they give some people a beach chair for free, totally paid for. He said to mention that in the email so I can fill out some paperwork if I was serious about spending more time at the beach. He also does lobbying with Virginia on Capitol Hill. I had just looked into advocacy in that state of Virginia without much luck and then I meet this guy, who has all the right connections. I told him that I was interested in advocacy and that I want to get my MPH when I go back to school. Lastly, he gave me a lot of insight on wheelchairs. Basically, he said my chair sucks, haha. The cushion in really thick, making it hard for me to pull up under tables. The front wheels are really large and my back rest is way high than it needs to be, which might actually be hindering my ability to push myself and stressing some of those back muscles. He gave me both of his business cards, made me promise to send him an email, and got me in touch with an OT from VA beach who now own his own wheelchair repair shop. He also gave me his business card and promised to take care of me.

As if all this wasn't enough (and meeting/talking to Jesse the night before), a girl wheeled up which I was talking. I instantly knew who it was- Rachelle Chapman. I felt like such a stalker when she introduced herself and I said I already knew who she was. I follow her on social media and was also a little star struck by her appearance. In 2011, she was pushed into a pool by a friend at her bachelorette party. She has a high cervical injury and is quadriplegic. She has a two year old daughter, married to the man she was supposed to be with, plays wheelchair rugby, and promotes different wheelchair products, like a stroller that attaches to a wheelchair.

Talk about connections! Not only did I get to surf and learn about the world of adaptive sports, but I also met some really great people.

August 11

Vicki is out of town this week, so my personal training was with Katie...and she killed me! It was a different kind of exhaustion than when I workout with Vicki and I really don't know which is worse, haha (but in a good way). It's so hard, but I actually like pushing myself until I physically can't do something anymore. And that's exactly what happened this morning. My shoulders, biceps, triceps and chest were on fire! Up beat music and encouragement from Katie helped, but I barely completed each  circuit. 

My appointment with Dr. Recio went really well. He called me his "star patient" and I'm not really sure if he says that to everyone, but it still made me feel good. He was happy with the progress I've made in my time at KKI and thinks I'll just continue to improve. (I just hate how long recovery takes!!) 

For once, my temperature was actually normal! It's been 97.4 (lower than normal) since I got sick, which apparently is normal for SCIs, but it being back to 98.4 is a good sign of healing. And I think the best news he gave me was that the sweating wasn't going to last forever. It's 100x better than it once was, but I still randomly sweat out of nowhere. And the strangest thing is that it's mostly tactile for my legs...a blanket over then results in sweat dripping off them and if my leg touches something like the door when I'm in the car, then that small section of my leg will sweat. I'm glad I'm not having to change my shirt three times a day anymore, but I still hate feeling gross like that. It makes me worry about what it'll be like when the weather gets colder and I have to bundle up with blanket or sweatshirts...my head will think I'm freezing cold but my body will think it's hot. The sympathetic and parasympathetic nervous systems are so hard to understand! 

He discussed how he wants me to return in January for about 8 weeks and then mentioned how he wants me to try a different medication when I return that is approved for MS patients and "helps with walking." I'm not really sure what that's all about, but I plan to do some research..

Then I had a final ASIA assessment. I've explained it before, but  here's the scale: 

When I started at KKI, I was an ASIA B. I'm now ASIA C! And honestly, it's really not too far from a D. I was hoping there would have been a bigger change and was a little disappointed, but then I learned that not even 20 years ago, people thought that an individual's ASIA level never changed. Like, that's what Mom was taught in nursing school. So that made me happier; I guess it's a bigger deal than I thought. Also, part of the testing is sensory: can you tell if something is touching you in general, the difference between sharp and dull, and light touch. I was impressed with how much better it went than just two weeks ago when I saw Dr. Pardo. I really think things are changing more rapidly that ever before (using the term "rapidly" loosely...not according to my standards, but I'll give in and agree with the doctors and therapists). 

My last day of therapy brought more good news and achievements. First of all, Kim and I walked for 53 minutes straight!! A new record! And for once, my left leg was pulling forward when I stepped. It's usually my left leg that is good at straightening and providing support while I step with the other leg. The right one is usually good at swinging forward. So that's another big change! 

I rode the twelve channel bike before my afternoon therapy and then we did over ground walking. It was a good way to end therapy, but I was absolutely exhausted by the time we did my final evaluation and discharge measures. I hate doing poorly on "exams," so I was really frustrated that Dennis scheduled my evaluation after everything else we did. I tried to just tell myself that meant I'd definitely do better when I come back in January. The one thing that actually did change for the better was some ankle activation that hadn't been noted before. I hope that develops more (and the stim bike should help with that since it has lower leg stim!) because when we walk, I drag my toes,which holds me back some. Having ankle control would help me pick my toes up and result in better steps. 

I'm making a list of goals and things I hope to accomplish by the time I return. I want to be stronger and more fit, not to mention being able to do so much more on my own. 

August 8

So, for my birthday, James got me tickets to see the Nationals. We met up in Alexandria and started towards a sushi place he thought I'd like. On our way there, we passed a place called "sushi, tacos and cocktails" well, what's better than sushi? That's right, sushi PLUS tacos and alcohol. Of course, we decided we had to park and go there instead. In true Morse fashion, we got a couple different things so we could share and it was AMAZING.

After dinner (and after driving around a little bit because we couldn't find our parking lot and because we missed our turn), we finally ended up at the game. The seats were great (and right behind Bryce Harper) in right field. We watched a few innings from those seats, the our friends (John and Kelly) got us access to the club level. It was awesome!! The seats were incredible and it was totally accessible. Seriously, the bar even had a section with a lower counter where the bartender could actually see my face. Why don't ALL bars have this?!! It makes me even more passionate about wanting to advocate for things like this. It's something so small, but it could make a difference for a lot of people. Obviously, I'm not just concerned about how things are at a bar, but a lower counter like that should be everywhere! Pharmacies, banks, stores? 

It was such a good birthday present and I was really happy to have been able to spend that time with my brother. We don't get to do too much just the two of us. We've always had a good relationship, but for the first time, I kind of felt like he was the one looking out for me instead of just me being the bossy big sister. It was a nice change. 

Oh, and the Nationals won! 

August 9

I feel like the days are flying by as I'm in my last week in Baltimore. Everyone keeps asking how I feel about my official therapy coming to an end and I honestly don't really know. It's weird. This is all I've done for so long. I'm excited because it kind of sucks going up and down the road each week and I can't wait to get back to my schoolwork, but I'm also so scared of not making enough progress because I'll be doing my own therapy. The last thing I'd want is to take steps backwards and I know I'm going to have to be very disciplined and diligent with my workouts. I've been doing research on different gyms back home. I've downloaded an app for my personal trainer to send me workouts. And I've signed up for the KKI account where my therapists can upload various stretches, exercises and videos. Plus, I have resistance bands, boxing gloves and an a bike. Now I just need my standing frame and stim bike! They're both still in the works with insurance, which seems like a never ended process, but I hope the headache of dealing with all of that is almost over. I'm doing everything I can to be prepared for doing my own therapy and I'm making lists of what goals I want to achieve by the time I come back. 

So far, this week has been a great way to end things. My legs have been giving me a harder time as far as spasms go. Like straightening out from under me midway through a transfer. But I'm hoping that's just part of recovery...it's kind of what everything else did as I started to regain movement, so I'm hoping that's what's going on although it's super frustrating. 

Angelina was the therapist that filled in for Dennis last week and she thinks things were different just from the time she saw me last Monday to this Monday. And Rachel has been pretty impressed as well in the pool and on land. I'm just hoping Dr. Recio is as impressed as everyone else has been when I see him tomorrow!

August 3

Second to last week went great! The power on the stim bike has jumped like crazy with numbers over 8W. I remember when 2.0W was a big deal and therapists told me it wasn't really significant until it was over 4W. But this week, the average for a whole hour was almost 6W. It's crazy that it would change that much in just a week. I know things have been changing in my legs, but this week was evidence. The pool went the best ever- on Monday, Beth set a new "record" for doing 30 minutes straight (she's a little competitive), but then Kim and I went 41 minutes straight! This was a big deal not just because of the timing, but also because Kim and I don't normally walk well together. She's a lot shorter than me, so she has a hard time reaching my legs. Eric usually has to help by holding my hips forward and pushing my legs forward so she can reach them. But on Tuesday, I was bringing them forward enough for her to do it all. She kept looking at the water and I knew it was because she wanted to know how much Tim was helping her. I was happy to be able to tell her that all the was doing was helping at my hips. And even then, he said he was doing "minimum" help. I even went to say my goal for when I came back was to be able to stand in the water without hip support, then Tim took his hands away to show me I was already accomplishing that goal. I couldn't do it for too long and it was pretty hard, but I did it! I guess a better goal will be to not need much help of land by the time I come back in December. 

I had a personal training appointment with Vicki on Wednesday and she kicked my butt like usual. We talked about what workouts and exercises I'll be able to do by myself once I'm home and back in school. She's actually setting up a program online so she can send me workouts. Then I found boxing gloves and mitts and an arm bike online for pretty cheap so I can use them for cardio. I'm working on writing out different workouts so I will have everything organized for in two weeks when I'm on my own. 

I've also spent a lot of time looking up different scholarships and grant applications this week. There are a lot out there and I know every little bit I could get would help in paying for the bike and stander. I know I can do a lot of strengthening for my arms and core, but those two pieces of equipment will be essential to strengthen my legs.