Handicapped Parking is a Necessity, not a Luxury

That is a phrase I've wanted to scream from the top of my lungs since the day I started using a handicapped placard. Before my spinal cord injury, I was just as oblivious and uneducated as the next person. Quite honestly, I was content being blissfully ignorant about what the handicapped symbol actually stood for and what the term "disability" meant in general. I'm ashamed about it, but don't we all avoid the things that make us uncomfortable? This is a good example of one of those topics. Now that this has actually become my own reality, I've learned first hand what difficulties, struggles, and annoyances those with disabilities face. A lot of the struggles I face are out of my control, but I feel like a few of them are actually something I can change by educating others and bring attention to them. Now, I'm not really sure how many people are actually going to listen to me, of all people, but it's worth a shot, right? So let me enlighten you...

You'd think by saying "handicapped parking is a necessity," that would be all the words that needed to be spoken. But, no, not in today's society. We all think we deserve something and if someone else has it, then everyone should have it. We are entitled to the same "privileges." Trust me, this is NOT a privilege. Matter of fact, whenever there is enough space for me to get in and out of my car, I don't even park in a handicapped spot. Can you believe that? And I actually know a lot of people that do this.

We don't park close because of the distance and so called convenience. We park close because those are the only spots with those dashed lines next to them that allow us to open the door wide enough and throw our chair out of the car so we can assemble it..or let down a ramp from our accessible vehicle. That's what those lines are.

I remember thinking that they were just random lines taking up a perfectly good parking spot...and I wonder how many people think the same. That's why I try to be tolerant of other people's ignorance, but it's flat out hard sometimes. If we don't have those lines next to the side of the vehicle we were exiting and entering, we can't get in or out. Our chair isn't going to fit and we definitely aren't going to be able to open the door wide enough to transfer in/out and then assemble the chair.

If we parked in a regular spot and no one was next to us, allowing us to get out, that would be fine. But what happens when someone does park too close by the time we come back to our vehicle? We can't just get in the other side of our car and climb over. It isn't that easy. And what if we did require a ramp to be let down from our van? There's absolutely no way around that if someone is too close.

You wouldn't believe the number of people who totally disregard those access lines and actually use them as a parking spot. Sounds pretty ridiculous, right? Well, it happens. I was actually in Philadelphia a couple weeks ago and when I got to the parking garage to get into my vehicle, someone was parked in the dashed lines next to me, exactly where I needed to go. Luckily, she was still in her vehicle. I politely (and I mean politely, because I always try to make people feel guilty before I totally unleash all the attitude I have in me) told her I needed to get into the vehicle next to her in my wheelchair. She was kind of rude about it and I just told her "that's a handicapped spot." You'll never guess what her reply was..."I'm handicapped too!" As she pulled away with her window open, I told her "if you were truly handicapped, you would never park on those lines." Seriously though, you just wouldn't. I'm glad I came out of the hotel when I did because I'm pretty sure she was going to park there and then I would have been completely screwed.

And honestly, if you need a handicapped spot for whatever your disability is, you should be considerate enough to leave the spots with the access lane open if there is another space you can pull into. I really feel like there should be some kind of education course on how to appropriately use your handicapped placard, because the ignorance doesn't just extend to the people not affected by a disability or never having to use a handicapped placard. People that have the placard for whatever reason continue to use it, even if they no longer need to. They think "well, it's just this one time" or "I'll be real quick" or "it's raining" or, simply, "I'm old, I deserve this."

Doctors are so lax in how they give these placards out, and the DMV lets it be that way. Last November, my temporary tags ran out and I had to go through the process of getting a more permanent one. I saw the list of reasons for getting a placard on the DMV paperwork that I had to fill out for my doctor and was completely blown away. I'm not trying to be judgmental, and I know there are some good reasons for some of them, but you can get those "prime parking spots" for having a learning disability or being under 4'11". Like I said, there's probably a good reason, but if I don't have one of those access lanes to assemble my chair, I literally can't get out of my vehicle. And I shouldn't avoid doing things in public just because I'm afraid of the parking. It's bad enough that I have to deal with a wheelchair, I shouldn't let ever other aspect of my life be affected by it as well. I shouldn't stop doing the things I love or going places I enjoy.

The dates on these placards are sometimes good for over five years. So if your grandma gets a knee replacement and needs one for a couple months, she may still be using it four years later. Granted, some older people may need to park closer. I'm not doubting that. I know many older folks that park close because if they spent all their energy walking in the parking lot, they wouldn't be able to walk around the store to get what they need. But not everyone is like this. There is NEVER a handicapped spot open at my gym because all the older people park there, then go inside for their water aerobics and to WALK on the track! Figure that one out. The staff actually confronted some of these people about that once and, come to find out, people were just doing it "out of habit," or because it was a family member's tag and they were just used to using those spots when that person was with them. What???

People use the excuse of "I'm just going to be a minute." Well, what if I don't have a minute to wait on you? And especially when it's raining, ugh! You parking close isn't getting you to the front door any faster than me. I have to assemble my chair, transfer out of my car, and then get into the building. And guess what? I can't even hold an umbrella. My hands are busy propelling me to where I need to go, getting wet and muddy in the process, and even if I'm wearing a rain jacket, it isn't going to protect me that much. Unless it's a poncho, my legs still getting wet. And my chair will definitely still get wet, which will affect me for the next however many hours it takes for it to air dry.

People that actually need those handicapped spots would give up that "privilege" in a heartbeat. Ask any one of us. It's not a luxury. It truly is a necessity. We aren't lazy, we certainly aren't saving ourselves any time, and we hate that we have to be labeled as "handicapped."

April 5, 2018- It's not just about me

There have been a lot of topics I've wanted to write posts about, but I've been fortunate enough to see such continual (slow, but continual) progress, that my blog has turned into a platform to update everyone about what is going on, rather than to advocate and bring awareness to the issues I'd like to write about. I have a list of these topics: relationships I've made, the amazing SCI community, traveling with a disability or wheelchair, and the latest-- how to treat a person with a disability and how to teach your children. I'm hoping to touch on all these topics and more at some point, especially with how much positive feedback I've received from my latest blog. This is what I originally envisioned when I started a blog...Granted, I really started it as my "therapy" because I was tired of all the psychologists that kept coming by my hospital room, insisting that I talk about my feelings. I realize how important it is to sort through your feelings after something life changing happens, but I wasn't connecting with any of these doctors, and I really felt like they were pushing themselves on me. I hadn't been home in three months and was getting a lot of messages, questioning what had happened to me and how I was doing...so that's when the idea of a blog started. I wanted to inform everyone what was going on with me, but I started to discover that it really was therapeutic. By writing out everything I accomplished each day, which was a lot, I was able to focus on the positives I was experiencing instead of how much I felt like a rug had been pulled out from under me and left me in a heap on the floor. I say that I accomplished a lot each day, because I literally couldn't even hold my own head up when I got to rehab. If you look back at some of my first posts, I wrote things like "I cut my own sausage patty at breakfast!" and "I got a pair of socks on by myself!" Whenever I get frustrated, I look back at some of those posts to remind myself how far I really have come...it's a little different rereading it and hearing it in my own words instead of hearing other people cheerfully tell me how "blessed" I am and how "inspiring" I am. (I know people mean well, but sometimes I just want to have a pity party...not a long one, but just let me take a dip in the pity pool! I'll get over it and bounce back with even more determination, I promise...but I need to have my weak moments now and then). But also, as time went on, I realized that I was letting people into a world that I didn't even know existed. I was teaching others about spinal cord injuries and this whole new world I hadn't even heard of.

Whenever I finally find time to sit down and write, it turns into a "catch up" session, talking about therapy and updates about school, instead of the other things I've become so passionate about. ADA laws and accessibility have become two things I care so deeply about, and it's not just because it pertains to me. I can't believe I've studied science, almost completed graduate school, and worked in healthcare for ten plus years and I've never heard the term "spinal cord injury." I've never heard much about quadriplegia, paraplegia, and definitely not the words "autonomic dysreflexia" (I'll go into specifics on what that means at a later time). And you know what's scary? Not many nurses, doctors, or ER staff have much knowledge on these topics either!

I've learned so much on this journey that I've decided I'm going to get my Masters in Public Health once I finish my Doctorate in Optometry. I learn something new about accessibility and disabilities every single day and it has made me even more aware of how absolutely clueless our society is. I've already done some advocacy stuff on capitol hill because that is what optometry is all about. It differs from state to state based on what the optometrists in that state have lobbied for the rights to do. For example, doctors in Massachusetts couldn't prescribe glaucoma medications until more recent years...they could diagnose it, but then patients had to see an ophthalmologist (who went to medical school instead of optometry school) to get the eye drops. So, I've seen what it's like to fight for what you want and to advocate for different laws..and while I'm passionate about my future career (I mean, it's what I've wanted to do since the THIRD grade), my heart is even more dedicated to fighting for everything ADA laws encompass. I've seen and experienced it first hand, and I really don't think it's asking too much to have a bathroom stall that everyone can use in local businesses...to have more than two accessible rooms in a hotel that has HUNDREDS...to have a smooth curb cut to get into different stores and on/off the sidewalk. I wanted to be an eye doctor because it was something I could relate to. I've had glasses since the third grade and I distinctly remember the feeling I had when I went outside and could see the leaves on the trees for the first time. (I also toyed with the idea of being an orthodontist for the simple reason that I had braces for  seven years, but I'm glad that didn't stick with me for long!) I think when someone has a personal connection with what they're doing, they accomplish more..they actually know what they are talking about and can get people to listen to them, not to mention how much more motivated they are to succeed. I'd like to think that I would've been an advocate for disabilities even if this didn't happen to me, because it just seems right. But I also think that I will accomplish more having first hand experiences. I'm excited to bring awareness to these issues, because I think half the battle is that people really just don't know. We, as a society, aren't educated. And unless it personally affects us, we don't even really care to be..

How do you treat a person with a disability? How do you teach your children?

I was having a conversation with some of my therapists this morning while walking in the pool and I just felt like I needed to write about it and share...

I always enjoy being in the pool with Rachel, because you can count on her to have at least one entertaining story about her kids. Today, it started with the story of raising a frog. Trust me, these stories are as amusing as they sound (and sometimes we start laughing and get so carried away that we forget what we're doing.) The frog story is definitely not the conversation I wanted to write about, but I feel like I just need to share it and hopefully make people laugh before I get into something a little heavier. Anyways, Rachel has gotten the kids things like butterfly kits in the past so they could watch the life cycle, learn about raising an animal, etc. Well, her sister bought them this "life of a frog" kit, thinking it would be another experience like the butterflies, but maybe a little more advanced. Well, it was a LOT more advanced, with a 30 page instruction manual enclosed. Rachel said she started reading this kit and saw that the average lifespan of these frogs is anywhere from 5-15 years! and they aren't water frogs, which totally ruined her plan of releasing it into the pond behind their house, haha.

I love these stories not just because they're hilarious, but also because I love hearing about Rachel's interactions with her kids and her parenting skills (which I think are amazing, by the way). This morning, she was on a kick about how children should interact with people that have disabilities and how their parents should teach them to interact with those people. She really started thinking about this because her middle child, the five year old, saw an adult that was their size for the first time and blurted something about that person out loud...now, being a five year old, I think he was just excited that an adult was closer to his height, but nonetheless, it wasn't appropriate to say something out loud like he did. Instead of ignoring what happened, or waiting until later to bring it up, Rachel brought her son right over to the woman, had introductions and said how her son wanted to meet her and that she was sorry for interrupting their dinner. I'm not really sure how I would have handled it, but I liked her point about not just ignoring what your child does and to deal with it in the moment. What are we teaching children if we ignore certain things or simply "let things go" ? Don't you think they'll carry that with them in life and use those tactics to handle other situations in life?

This brought us into a whole conversation about how children interact with people in wheelchairs. Children are innocently curious about wheelchairs. I can't even tell you how many I've had go past me and get really close, just to try to touch the wheel. And whenever a child asks their parent "why is she in that chair" or something along those lines, if my mom is with me, she'll lean over and say "you can ask her." And it starts a conversation. And I think the kids become more comfortable. Now, this is a lot different than some of the other interactions I've had with adults (who should know better!!) So, I took that opportunity to tell them about some of the things people have said to me..(and I'll fill you in, as well)..

-"Aw, were you in an accident?" Um, first of all, that's kind of personal to ask a stranger that you've never seen or talked to before. And what if I was in an accident? Do you know how many people I've met that have an SCI from a traumatic car accident? A lot! And many of those people need to have therapy to deal with the PTSD that comes from something so tragic. How do you think those people feel when a stranger asks them about their accident?
-"How long are you going to be in that wheelchair?" I guess this doesn't bother me as much as most people (although it definitely still  does to some extent!) because I'm still continually seeing progress, but how awful of a question is that to ask someone who may not get out of their wheelchair? And shame on you for thinking they should! For so many people, it just becomes part of who they are...like having brown hair or blue eyes. Why does getting out of their wheelchair and walking have to be an issue?
-"Has the doctor given you a date for when you're going to start walking?" Is that even a serious question?? "Yeah, on May 25, the doctor said I'll wake up and be able to get out of bed and go for a run." (This really happened).
-"So and so is in a wheelchair, do you know them?" well...I know this person who walks, do you know them?
-A 350lb man came up to me on his motorized scooter and said "as you can see, we have a lot in common," as he proceeded to tell me about his osteoarthritis and how the doctor said if he just lost 150lb, he'd have a much easier time getting around... which leads me to the next thing I get pretty often: "I was in a wheelchair for a little bit after my surgery (for ___) and I hated it!! I don't know how you do it...how long do you have to use it?" ...really?
-the woman at church that greeted me by saying "well look at you there in that wheelchair.." I understand people just say what comes to their mind, but that was honestly enough to make me not want to go back...

The list goes on and on...

But Rachel asked me what would be appropriate for her kids to ask.. What should she teach them? And I thought that was an amazing way to parent. Like, what is okay to say and what isn't? I mean, for the most part, kids are kids, and you have to remember that they are just curious and really don't know any better. I told her to just let them treat the person with a disability like anyone else, I really don't think people are going to be upset about a child being curious. Now, if you teach your child to just sit back and stare (like their parents usually do), that's a different story. I think most people would rather have the child ask about the wheelchair. When kids do that I usually reply with "I got sick and my legs are getting stronger." That's enough of an answer for them, which is much different from most adults. Kids are satisfied with that answer and just move onto talking about something else, like the wheelchair no longer exists now that it was addressed. Why can't everyone be like that? I really feel like if we teach this to children while they're young, maybe our perception of disabilities will change in society. Maybe we will no longer look at someone in a wheelchair, someone using a walker, someone with a cain, as if something is wrong with them, but start seeing it as just another way they get around...or even as another character trait, like the color of their hair.

Here are a couple videos I've found somewhat amusing, but also so true. Maybe people can get more of a look into what it's like in the day of a wheelchair users and the ignorance we have to deal with...

https://www.youtube.com/watch?v=M0jrmmqBBZ8

https://www.buzzfeed.com/tallalex/the-10-most-stupid-things-you-should-never-say-to-icll?utm_term=.uhP6lNvJWx#.rwYaBo1eVw

April 2, 2017

Ever since inpatient rehab, I have been known to set goals and achieve them in a very short time frame. It started with my first goal of wanting to be able to scratch my own nose. The medications I was on made my nose so itchy and I wasn't able to lift my own arm up or even speak in order to let anyone know what I needed...I was always making whatever nose I could manage to come out of my mouth in order to get someone's attention, and then find myself wiggling my nose (like the actress in "Bewitched") to signal how itchy it was. I set the goal of being able to do this by myself on my first day at Magee. I achieved that goal before the end of the week. Most of my inpatient rehab continued this way. I guess it's understandable because I literally couldn't move anything when I arrived. It was easy to achieve small goals because any improvement was progress...and when you have nothing, anything you do seems like a huge accomplishment. My goals continued- feeding myself, putting my  contacts in, getting my hair into a ponytail, etc. It also became a joke that anytime my therapists got a hold of the adaptive equipment I needed in order to make a specific task easier, I didn't need it anymore. Like the effort they went through to install a sling-like device on my chair that would help keep my arm elevated so that I could feed myself. We got it set up and I never had to use it...not even once. We'd say "let's install this piece of equipment just so you won't need it anymore."

Now that I've made a lot of progress, my goals have become much harder to achieve. My current goals consist of: 

-being able to take apart, load, and then unload my chair from the car by myself (this takes a lot of problem solving, like how to position the seat, how to hold my chair, what to load first; not to mention how much core strength it takes!)

-standing independently in the parallel bars for a longer length of time (I no longer require someone breaking their fingers while holding the harness around my hips, but again, this takes a LOT of core strength)

-"sit- to- stands" from 21 inches. I've achieved this goal from 24 inches, but my chair height is 21, so I'd like to be able to stand from that height with a walker. If I could do this, I'd be able to practice at home and continue to improve.

-uneven transfers. Going from a high surface to a lower surface is easy, you've got gravity on your side. Doing the opposite is another story. I've become a lot more independent and like to get on and off the couch or into different chairs (not to mention when I use public bathrooms on my own and the toilet is something crazy like 14 inches!) I've asked my therapists to help me with this because it only helps me be more independent and more comfortable getting out of my chair in public..it's nice to sit in the booth with my friends when we go out to dinner and not have to stay in my chair...it's a small thing, but it's one more step towards feeling "normal." 

I achieved one of my goals this week and got to cross it off my list..and that goal was to be able to use the Eskoskeleton in therapy. It took me a whole YEAR to achieve this, which is the longest I've had a goal during this whole journey (well, besides being able to walk again). I have lost 20lbs (probably even more, since I haven't weighed myself in a couple weeks and I know how much looser my clothes are fitting) and over two inches off my hips. Of course there are less women using this device because of the hip width requirement (men have it so much easier, right?!) I've waited so long to do this in therapy and I was actually a little worried I wouldn't like it, like all that time I had it in my head that this was going to be the greatest thing, and then it would be nothing like I had imagined for so long. Luckily, that didn't happen. I loved it! I got in without a problem and spent the whole hour kind of get used to what I'm supposed to do. The machine was sensing my weight shifts, and then taking the step for me. As I get better and better, the therapist can make the settings more difficult and make it so that I'm doing more work and the machine is doing less. It felt kind of robotic, but at the same time, it was the most natural piece of gait training equipment I've used...and I've used a lot! I think the plan is to do this for an hour each week and I already can't wait until this Wednesday. 

March 24, 2017

I had my other two driving lessons this week! On Monday, I drove for two and a half hours straight...all the way to Maryland and back! I drove through the tolls, got gas at a gas station, and traveled on a bunch of major road ways/interstates. On Thursday, I was with a different instructor and practiced parking and backing up. I was perfectly fine with parking when the spot was on my left, but for some reason, right sided parking was way more difficult! I'm waiting to get a letter from the DMV saying they've reviewed my medical records and are allowing me to schedule my road test. Once I get that scheduled, my instructors said they'll take me back out to practice a few more things so I am more prepared for the test. I'm still surprised at how natural it feels and don't know why I was so nervous about getting back behind the wheel. However, I know I'm going to be extremely nervous for the actual test! And it really sucks I can't just go out and practice every day because I don't have my own hand controls yet.

It felt like I had been gone from therapy for months, when it was really only two weeks. I was so glad to be back though. The pool sessions went really well and in the video I have, you can tell that I'm doing the walking pretty much on my own. All Dennis was doing was keeping my knee straight while I brought the other leg forward. It was definitely the best video I have from the pool so far.

I was really upset that I wasn't able to do the Esko, like I had planned, but it was still an eventful week. The therapist that works with the exoskeleton had a lot of meetings with the company, so we postponed my first session until next week. Quyen felt so bad about it that she tried to come up with something new and exciting for us to do in therapy to make up for it. She had me wear these leg length braces that helped me lock out my ankles and knees, making standing a lot easier, this way I could just focus on my core and do some weight shifting exercises. I wish I could have braces like this and learn to walk in them, but my therapists said that it would just be training my body "the wrong way" of doing things and kind of hinder my progress. Instead, I have to take the longer, harder way and teach my body the correct gait techniques and also wait for the regeneration of nerves and muscle strength to come back.

I also had a reassessment with Dennis this week. I was a little disappointed it was this week, right after having time off and directly after a session in the pool. My legs were so exhausted and I just felt like the assessment could've gone a lot better. Some of my core measurements, like reaching side to side, have improved in the last month, but everything else was pretty much the same. They've extended my therapy until the end of May for now, and I'm just hoping to get as much time in as I can before my birthday in July (because I turn 26 and lose my parent's insurance...but that's a discussion for another time).

I did some over ground walking with Dennis, and he was much harder on me this week (like more so than usual!) It's much easier for me to walk when someone completely straightens my knee, allowing me to weight shift better and bring the other leg forward. Well, first of all, he wasn't straightening my leg very much, which automatically made me work harder. Secondly, he had me supporting a lot more weight than usual and the harness wasn't holding me up very much. By the end of the day, I was pretty tired, but my legs were completely shot. I could've possibly pushed myself to do more, but my legs were absolutely useless. Guess that was a good way to get back in the groove of things!

I had a phone appointment with RTI- the stim bike company- on Friday morning. I talked to the girl for almost an hour. She changed a few settings and really took the time to explain things to me. A couple of the settings were locked in place, like my resistance and control speed, which wasn't allowing me to progressively improve. She changed it so that once I meet a certain speed or start going too fast, I can increase the resistance. You would think this would make everything harder and cause my power generated to decrease, but the craziest thing happened. My power went from around 9-10W to 18! I could tell it was harder to pedal, like when you increase the resistance on an elliptical or other piece of gym equipment, but somehow, my performance was better because all the other measurements improved.

I took an exam for school on Thursday and was really disappointed in myself. I didn't do very well, and I think it was more because the questions seemed impossible. It was supposed to just be a review, since I've already completed this course, but I just felt like it was way over my head. When my professor emailed me to ask what accommodations I might need in the future, I started thinking about it.. I don't think I need specific accommodations because of my situation, I think it's more because I had ONE exam for the whole course. I don't learn like that. I'm already a horrible test taker, and because I'm doing all of this on my own, at home, by just looking at powerpoint slides, I think I need something more...like more quizzes along the way, to make sure I'm actually learning the material. I do so much better with repetition, not memorization. I'm hoping to talk to my professors about this next time we talk, because this is so frustrating.

March 16, 2017

It's been a pretty exciting couple of weeks. Florida was the perfect Christmas present...we were able to leave some snow and cold temperatures for a little bit of sunshine. Not quite as much sun and warmer temps as I had hoped for, but it was still better! The first place I traveled to in a wheelchair was to Punta Cana last February. I wasn't even a full two months out of acute care, I still had my loaner wheelchair (the one that weighed over 60lbs!), and I was still pretty dependent on other people. But Dusty's grandfather paid for my trip and I was just so excited to be out of the hospital and go somewhere warm that it seemed like the perfect opportunity. As you can recall, traveling was quite an adventure.. they don't really understand the term "wheelchair accessibility" in the Dominican. Luckily, they were so hospitable that it didn't really matter (well, that and the fact that Dusty makes anything work, haha. If I can't get my chair somewhere, he just picks me up!)

It's unbelievable to me how many people abuse the use of wheelchairs in the airport. I know that airports can be big and many people, even if able to walk, can't quite walk those distances. But all of the people I saw in wheelchairs couldn't have actually needed it. I try so hard to not be judgmental, but I was the only one in a long line of wheelchairs that didn't just jump right out of it to walk through the security sensors. I, instead, had to be individually patted down. One woman even tried to make a joke about it from a few lines over saying that I was getting a "free massage." Not quite that enjoyable, lady. I was also the only one that had to use the aisle chair to get onto the plane because I couldn't just get up and walk to my seat on board. And it's also unbelievable to me that only a handful of employees even know how to work the aisle seat (if you don't know, it's this little "L" shaped chair with straps that hold you in and it's narrow enough to go onto the plane and down the narrow aisle). Dulles was actually great at helping me get onto the plane, but the man that brought that chair to me when we landed in Orlando was completely clueless. He couldn't understand why the chair wouldn't move and it's because the brakes were still on it.. but all in all, it was a lot smoother than my previous travel experience and I'm learning more and more with every place I go. I just wish there was more of a standard for how to travel in a wheelchair and that different airports had the same requirements and procedures. I expect for it to maybe be different in other countries, but in the US, we should keep it the same. Let people know what they are supposed to do and keep it the same, it's hard enough to go different places in a wheelchair and if we at least knew what was required of us, we could be more prepared and not stick out even more than we already do...or hold up lines more than we have to!

Once at the resort, we mostly just stayed on the premises and near the pool. I stuck to my diet and we cooked almost all our own meals in our condo, which really made me happy because I wasn't about to take steps backwards after finding out that I'd finally lost weight! And we really must have done a good job because Mom lost 3lbs during our visit!

I was so fortunate to have been able to meet up with so many people I knew while in Florida. On the first full day we were there, two of my friends and classmates drove an hour and a half to come spend the day with me. They're currently doing a rotation in Tampa and didn't hesitate at all once they found out how close I was. Over the next couple days, I was also able to catch up with my grandparents and aunt and uncle that also live nearby. We met my grandma for lunch and towards the end of our meal, my grandfather even stopped by. He's been having some back problems and we didn't think we'd be able to see him, so it was nice to be able to catch up with him as well.

We spent one day by the pool and got to spend it with my aunt and uncle, who we hadn't seen in a couple of years. We also even met new friends! There's a woman that owns a timeshare at the resort and she was vacationing with two of her neighbors from Wisconsin. I think she was automatically drawn to me because when her daughter (who is now in her 40s) was 17, she was in a car accident that left her paraplegic. She instantly struck up a conversation and it was more natural than the other people randomly passing by and asking things like "are you okay?" I always just smile and politely say yes, but I'd like to come up with a good answer to that...maybe I should've said "no, my drink is empty." haha, Do you think that would work? I'm kind of used to people buying me drinks at bars...it's always been like that. Dusty loves when a guy asks him if he can buy me a drink because he always replies with "buy her as much as you want, she's going home with me!" But I think this happens even more now because of the wheelchair...that's one thing I don't really get insulted by. Hey, if that's a "perk" to the chair, then I'll look at it as one while I can. I also get a lot of compliments about my smile or how pretty my eyes are, which has actually always happened as well. I'm not sure about the eyes, but I know I have pretty teeth--as I should, having gone through nine years of braces! And I hadn't thought anything about it until someone complimented me in front of my brother and he got so mad saying "what, does that guy feel better about himself now that he complimented the girl in the wheelchair??" Maybe I'm just naive, but I never even thought about it like that before. And now I can't help but question every compliment I get! And what a shame. Being nice and pleasant is one thing and I think our world needs more of that, but there's also a difference between that and showing pity. I think James is wrong though, I don't think I'm showed much pity. I like to think maybe people are drawn towards me because of the wheelchair, but also that maybe I motivate them or just by continuing to live my life and follow my dreams, I'm showing people there aren't boundaries. That maybe their aches and complaints aren't as bad as they make them out to be. And if it takes a little compliment about my eyes or smile to strike up a conversation like that, then I'll take it.

But anyways, this woman, Diane, invited us to her condo one night because they have a balcony and can see the fireworks from both Epcot and Magic Kingdom. I hadn't seen the fireworks before and I know it isn't the same as actually being at one of the parks, but it was still a sight to see. She also wanted me to check out the accessibility of their place since it was different from ours, which I really appreciated. I was so intrigued by her daughter's story because she is grown with a family of her own now and her daughter, Diane's granddaughter, has started an adaptive water skiing program. I saw videos of different people getting out on the water for the first time and it was just so uplifting to see all the smiles...this is definitely going to be another adaptive sport I have to try! (I'm on a mission to try as many as I can, while I can). The program is called "Graceful Wakes"--here's a video https://vimeo.com/175471208

My last day was really exciting. Awhile back, one of my roommates shared my GoFundMe page on Facebook to an optometry forum for doctors across the US that we are all a part of. A female optometrist in Orlando saw this and sent it to a woman she knows, named Donna. Donna's husband is also an optometrist in Orlando and their son had ADEM. He is now 14 and fully recovered, but I've talked to this woman a lot over the past year. I know it's kind of crazy how we can get connected to people via the internet, but it's also pretty amazing if you think about it (in some cases, at least). Donna was talking to my mom and trying to plan our last day in Florida as a surprise for me. She wanted to meet us for lunch and have me meet the optometrist in Orlando to talk to her about my future profession. In the end, our plans kind of fell through. Donna's son was in a play at his school and she had to be there to help. Instead of just canceling plans, she made arrangements for someone (a woman whose daughter actually plays Cinderella at one of the parks) to meet us at the gate and get us into Epcot for the day. It was so great! I haven't been to Disney since our family trip when I was in the 5th grade and I honestly don't remember very much. I also really wasn't old enough to appreciate Epcot. Not only was I older this time, but I also got to see it through different eyes and check out the accessibility (which I'd heard was great, but I have learned to not always trust it when people say that). I'm happy to report that I was actually pleasantly surprised! They have a separate map for those with disabilities and a whole map key with different symbols that tell you if you can stay in your manual chair or if you have to transfer into a seat for the ride or presentation. There aren't a ton of rides at Epcot because it's more educational and has the different countries, but I was still able to do pretty much everything they had. I'm fortunate enough to be in a manual chair already, otherwise I think you would've had to transfer to one of the standard ones they kept there if you were going to get on a ride and stay in your chair. I think it would've been harder for someone in an electric chair, but at the same time, there are so many people in electric scooters, that I think it wouldn't be as inconvenient as you'd think.

But that brings me to another point...those electric scooters people rent!! AH!! The only thing worse than everyone using a wheelchair at the airport is seeing everyone in those scooters at Disney! I mean, I had a hard time driving an electric chair when I was in rehab, so you can only imagine some of these people driving them around a crowded amusement park. I saw several people run into things and one guy even took a turn too sharp and was on two wheels. I'm not making this up. Older couples would rent them, put little sun visors on the top with bug screens, put all their bags on the back, and then have trouble driving them around. I can't tell you how many times I waited in the wheelchair line behind these people and then they forgot how to turn the scooter back on, so we ended up being the last people in the ride or movie/event. At least once we were in the park and saw all of this, I understood why even with hundreds of handicapped parking spots, we still had trouble finding one.

The day was made even better by me being able to meet one of my friends from undergrad who is currently living in Orlando. She works for Disney and I haven't seen her since graduation. It kind of sucks how people grow apart as you get older and time passes, but it's also amazing if you get the chance to catch up and this was one of those moments.

Our trip home was possibly even easier than our trip to Florida as far as accessible travel goes. The flight attendants both ways went out of their way to make me comfortable (without drawing extra attention to me, like a lot of people do), and my wheelchair was ready and waiting for me as soon as I got off the plane (and this time, the girl actually knew how to work the aisle chair!) Matter of fact, the girl that brought the aisle chair to me when we landed was the same girl that helped me onto the plane when I initially left Dulles. She came on to get me and said "I thought I recognized your name on the list!" I joked back, telling her that I wasn't gone nearly long enough if they still remembered me!

I have a huge exam next week-- it's one exam for the whole class. I'm not taking a midterm and doing other assignments, just this one test. I think there are benefits and drawbacks to that, but I'm going to be so happy when it's over. I feel like all I'm doing is studying and somedays, I don't feel like I'm even accomplishing anything. So hopefully the time I've put into studying will pay off next week. I'm at least a little more at ease with how things are going because the professors I'm working with now have been very attentive and quick to answer emails with any questions or problems I've had.

The last thing I wanted to mention was that I had my first driving lesson on Monday!! I was so nervous, convinced that driving with hand controls would be much like driving a manual car--which I have practiced before and never even made it out of a parking lot. My driving instructor, Tammy, made me feel so comfortable behind the wheel. Like, as soon as I started driving, it felt pretty natural. I hadn't thought about it before, but I think I had two things going for me. 1) I already knew how to drive. I know the rules of the road and the appropriate reaction time I needed to decelerate and accelerate. and 2) Everything I do is with my hands and arms now, it was bound to feel more natural than I expected. There are a lot of different kinds of hand controls, but the ones I used were installed on the right side of the wheel and I pushed forward to brake and twisted to accelerate. I started by doing a few laps around an empty parking lot, working on right turns and then left turns. Then we made a big loop around multiple parking lots, including a walmart parking lot. I was kind of feeling like if I could navigate through that parking lot with all those people not paying any attention, I could drive anywhere. And before I knew it, I was on route 50 and then 66! (two major roads through VA). I'm already looking forward to next week because I have two more lessons--Monday and Thursday, and then I have to wait a couple weeks to schedule a behind the wheel test with the DMV. But after that and after I get the car modified with the proper hand controls, I'm good to go! The next goal will be for me to load and unload my chair by myself. I think I can do it, but I think it's going to take some problem solving. I've also talked to a lot of patients that have hurt their shoulders from moving their chairs in and out of the car, so I just want to be cautious and make sure I'm doing it the best way possible. The last thing I need is to strain my shoulders or hurt a rotator cuff! Especially since those are already over used in people that are in wheelchairs. I'll post an update after my test and next driving lesson! I didn't have therapy this week because of the snow storm, so hopefully I'll have some updates from therapy as well.

March 1, 2017- I was due for a day like this!

Yesterday was one of the best days of therapy I've had in awhile...and that's saying something considering the fact that the only real "bad" therapy I've had were those 20 minutes two weeks ago.

Let me back up a little bit first. Tuesday was a good day as well. I've been working on "sit to stands" in therapy and have been able to do it from 24 inches with only minor knee support. My goal is to be able to do this from 21 inches, the height of my chair, so that I can practice at home or anywhere outside of therapy. I was able to do this with Kim in the pool on Tuesday, so I know it's an attainable goal. I was relieved that my time in the pool with these sit to stands and walking went well, because I've been having a really strange sensation in my feet. On Monday afternoon, I felt like my left foot fell asleep. I've had this feeling for the last month any time my legs were crossed, but it was totally normal. Like whenever I was in a position and didn't move for a little while. It feels just like anything would when it falls asleep and it'd go away after I move and reposition. I was happy about this change because that's exactly how my arms and hands felt before I was able to have full motor control. However, when my left foot fell asleep Monday, the feeling never went back to normal. It still felt kind of numb and tingly when I got in the pool (and my right foot did too, but to a much smaller degree). It was a weird feeling because although I don't have much control over moving my foot, I at least know where it is in space and can feel that it's on the ground or if something it touching it and this "asleep" feeling was more overwhelming than those other sensations. When we were walking, I couldn't really tell where my foot was and the numbness was really bothersome. 

My therapists were a little worried about this new feeling and asked a lot of questions. But other than the sensations I was describing, there weren't any other symptoms. No swelling, no redness, no changes. When I got to the gym, Dennis got me on the Thera-stride and while we were walking, with a therapist on each leg and one at my hips, Dr. Recio came in with his nurse. I already had about four therapists with me and when the two of them came in with my mom, I felt like I was taking over the whole gym! Dr. Recio asked me what was going on and, keep in mind that he is a little dramatic with a lot of personality, he told me "I am very concerned. This is not good at all. I'm very unhappy...you need an MRI right away! Today! This could mean the hardware in your spinal cord is slipping." My heart almost stopped! I don't know why, but I was thinking the "hardware" he was talking about was a phrase for everything that makes up the spinal cord and instead of "slipping," I heard "snipping." Instantly, my mind started picturing a spinal cord with all the axons "snipping" and tearing, dying away. For a brief second, I thought "oh my gosh, what if I'm not getting better? What if I'm actually getting worse?" Luckily, Mom stepped in and reminded him that I didn't have any hardware...I had ADEM. I guess, he was thinking I had actually metal and hardware in my spine, like many of his patients. And when those individuals complain of numbness, it's a very bad sign. Dr. Recio said "Oh, yes. ADEM. Okay, never mind. No worries. Just monitor." and walked away. Just like that. It was the biggest roller coaster of emotions all within a two minute time span, but thank goodness he didn't seem as concerned in the end. He told me to let Dr. Pardo know, so I sent him a message on "My Chart" just giving him an update. Not even two hours later, he called on our way back to our room. Dr. Pardo asked me to clarify if I thought that I was losing sensation that I had already gained, or if this was a change that was in addition to what I had. It's kind of hard to explain, but I feel like the numbness was just stronger than my perception of where my foot was in space. I was concerned this was a bad sign because I felt like I had more control before. It was more "normal." He assured me that this is actually a good sign. This is nerve recovery and regeneration. It's what is supposed to happen. Isn't it crazy that things kind of have to get worse before they get better? He also warned me that since these nerves are waking up and starting to work, there's going to be some misfiring and my body may not know how to react. I may experience some pain and to keep him informed so he can prescribe me some pain medications if need be. Oh, how I hope it doesn't some to that! I've been so fortunate thus far to not experience the nerve pain I've heard other people complain about. 

The rest of my session with Dennis was successful. He tried walking over ground for the first time since that failed attempt a couple weeks ago. This time, he let me take the top harness off, requiring me to support my own upper body and use my core strength. Not only was I able to bring each leg forward on my own, with the therapist only support my knee, keeping it straight as I bring the other forward, but I was doing much less compensation from my hips. It's so much easier to use my hips and just throw my leg forward because those muscles are stronger than those in my lower leg. The movement usually comes more from my hips, instead of my knee coming up and forward. Dennis was really impressed and I was so happy considering how awful this exercise went the last time we tried. I honestly didn't last very long. We did a few times up and down the length of the gym...4 times to be exact. I took a break after each length and by the last one, my body was completely exhausted. There have only been a handful of times I've felt my body really be pushed to the point where I don't think I can continue. I'm not usually one to take breaks and I can always make myself do just "one more" of whatever exercise we're doing, but I really felt like I was going to collapse if I tried to keep going. 

We took it easy that night and since Kristen and her mom were still in Baltimore (from Knoxville) for her second week of therapy, the four of us got take out and stayed at the Hackerman Patz House, where we stay each night. The have a large family/living room with a long table and plenty of space for us to hang out and be comfortable. It was so relaxing to just sit around, telling stories, sharing laughs and experiences with people that have kind of been through the same thing. 

But on to Wednesday. The best day. Quyen changed my 8-10 therapy to 10-12 and you'd think that we'd have so much more time in the mornings, but every single time, Mom and I have barely made it there by 10! I love having a slower start and not feeling rushed. Since the GEO was a little weird last week, probably from not being calibrated, Quyen suggested that we work on standing and sit to stands in the gym instead. We used the electrical stim that works through patches on my stomach and my back and I feel like that gives me even more control. I mean, as soon as they turn it on, I automatically sit with better posture because it activates all the muscles in my back. Our first goal was to stand for ten minutes, but I barely made it to seven. It was really difficult because she was not letting me lock out at my knees. And because she wasn't letting me do that, I automatically tried to lock out at my hips. But when she didn't let me do either and wasn't giving me much support, I was having a harder time holding myself up. The next stand was longer and then the third stand was THIRTY minutes! And she had even taken away the hip harness, only giving me some support at the knees when I needed it. Also, the stim was turned off for the last fifteen minutes of that. I thought it was going to make a big difference, but neither of us could really tell. 

While I was standing, I asked to get measured for the exoskeleton--the Esko--again. The Esko is like a personal exoskeleton that you wear. It goes around your legs and hips and you get to walk over ground with it. It has been a goal of mine since I started last year to be able to use this robotic-like walking machine, but my hip width was a couple inches too wide. Even in January, I didn't quite make the cut. When Chris measured me this time, he didn't even really understand why I was so worried I might not fit..or why I didn't understand what he meant when he said "you're in." Not only have I lost inches on my hips, but I weighed myself after therapy, and I've lost 18lbs in the last six weeks! I get to start in the Esko in the next couple of weeks and we're going to do it for an hour instead of my regular therapy to see how exhausted it makes me. If I can handle it, we'll try to schedule it outside of my regular therapy, but I think it's smart to not be too ambitious at first because I've heard a lot of patients say how tiring it can be. I just couldn't believe I lost that much weight. I've been doing everything right- counting calories, eating at home and not going out, making everything homemade, etc and I haven't seen it really pay off over the past year. I know something was working because everyone else in the family was losing weight, but for some reason, I wasn't. And I was the one working out for multiple hours a day. So when Chris told me that I fit and could finally do the Esko, I automatically teared up. Finally. Finally, that hard work is paying off.

As if I wasn't having a good enough day at therapy, the pool helped to end on an even higher note. I was with Lizzy and we practiced more sit to stands in the water at my 21inch goal. The walking was really great and I felt my right leg stepping better than I think it'd ever done in the pool. My left leg is usually pretty good at coming forward, but I need a lot more assistance with the right side. I was amazed at how much better it went! Now if only this would happen again next time I'm in the pool because I know how impressed Kim would be!

I also finally had a wheelchair appointment. I got a new seat cover that actually fits my cushion instead of being two sizes too big, new casters (the front wheels) because the old ones were a little crooked, and a new foot plate that is stationary instead of the one I had that flipped up. They also took some of the extra hardware and brackets off, which added up to three pounds taken off the chair. It doesn't sound like a lot of weight, but making the chair lighter at all should help me as I learn to load my chair into the car when driving. Speaking of driving, I have my courses scheduled!! They got me in right away and I have three appointments scheduled so far. Hopefully that's all it'll take for me to learn the hand controls and then I have to take a behind the wheel test with the DMV, but I start on the 13th, only a week and a half away!

I leave for Florida tomorrow--a trip with Mom and Sally that I got for Christmas. All I wanted was to go somewhere warm, and what better than a girls' trip?! I thought this was such a perfect way to end therapy and am excited to leave on such a good note...now I can really enjoy my vacation! And I get to come back to start driving, using the Esko, and continue to kick butt in therapy! Things are really looking up and I have such a good feeling about the upcoming weeks!