What's Next?

What’s next? That’s a question I get on a daily basis these days, or at least ever since I was discharged from Kennedy Krieger. Last Wednesday was (fortunately) and unfortunately my last day. I was given a home program filled with exercises to do at home and told to return in 4-5 months. I’ll be doing things like: riding my stim bike, using my stander/glider, working on standing with a walker at home, swimming, walking in the water, and strength training at my own gym.

Last time I took a break from therapy was last August, after going 3-4 days a week since that April. I remember being so upset that they were discharging me. I have to go through monthly evaluations to track progress and if I’ve met me goals or new changes were noted, they would extend me. Well, in typical “Kelly” fashion, I was crushing my goals and was seeing a lot of improvement, so I kept getting an extra month added on. Being discharged, to me, meant that I wasn’t improving or that I wasn’t doing as well as I had been. (This really wasn’t the case, but I had it in my head that it was). The next four months, I spent going to the gym, using my equipment at home, and actually having a life since I wasn’t traveling multiple days a week. I reconnected with different friends, got back to doing schoolwork, and actually got a lot stronger. Taking a break turned out to be the best thing I could’ve done, because when I returned, I was able to do so much more than I had before because I actually worked hard while I was gone, making therapy that much more successful once I came back.

During this stent of therapy, I crushed a lot of goals and definitely saw a large amount of improvement, surprising both my therapists and myself. Here are some of my accomplishments:

-First of all, I’ve lost 30lb since January and over 4 inches off my hips! This has to be first because I think it’s one of the main things that has helped make everything else easier and more successful.

-I'm completely independent (that is, if things are accessible, which unfortunately isn't the case in most places). But I've surprisingly even made non-accessible places work for me, which is a huge improvement. 

-I have accomplished a minimum assist sit-to-stand with a walker and can even stand with only a little bit of help at my knees once in a while for an extended amount of time.

-My core is strong enough to support my own hips while standing.

-I'm working on floor transfers, which is something that used to make me cry whenever someone would mention those words to me (I've come a long way...)

-I have my license and am just waiting for vocational rehab to finish paperwork in order to pay for my hand controls (they don't reimburse people, so it's worth the wait in order to save a few thousand dollars).

-I only have five courses left of school (two of which I'm in the process of completing now and one that will be done after a four day continuing education class on campus in June...speaking of that class, I'll be making that trip to Philly by myself if my hand controls come in and if not, I'll be getting a ride and spending the weekend in the hotel by myself...BIG changes, huh??)

-I'm able to load and unload my own chair into the car...not very gracefully because I'm covered in bruises. And not very fast, but practice makes perfect, right?

-My stim bike power is continually increasing and has proven to play a large role in my strength and recovery.

-Dusty and I are working on our slow dancing because we have about five weddings to attend before the end of the year. We danced at a wedding in September and it was sweet, but I think my standing has improved a lot since then, so I know we can make it look more natural and kind of blend in on the dance floor a little better, haha.

A side note about school: it's kind of an upsetting subject. And no matter how many times I say that or explain to people that I don't really know what's going on with it, they continue to ask questions. I'm just taking one (or two) classes at a time and focusing on getting through those. I'm not even as uptight about getting a perfect score on exams like I used to...I literally just want to pass and keep moving forward. Once I finish these last couple classes, I'll move onto my rotations. I don't know when they will be, how long they will be, or where they will be. All I know is that I'll be going on rotations. Thinking and worrying about it just stresses me out. Plus, with all I've been through, I've learned that God laughs when we try to plan everything. I've spent my whole life planning...planning every single detail of my life... and I simply don't want to do it anymore. 

And there you have it...a little update because so many have noticed how much I've been slacking on my posts. I can't help it! Therapy is a full time job (literally over 4-5 hours of working out per day), school takes up even more time than that, and I have luckily reserved the remainder of my time to continue to have somewhat of a social life. 

May 1, 2017- I think I'm due for a "me" update

I've gotten a little carried away with other topics and things that I want to write about lately...sometimes it's nice to not talk about myself! I feel like that's all I do in my everyday life- people what to know how I'm doing, what has changed, how's school, how's everything else and then they want to talk about how far I've come and "remember when you couldn't do ___"...and I know they mean well, but I really just don't want to focus on those things, or really even talk about myself at all sometimes.

But I think I owe it to everyone to give a little update since I haven't in a little over a month, haha. So, the bad stuff first. I mentioned in my last post how I've started experiencing this dreaded nerve pain I've heard everyone talk about. The cold and rain actually make it worse, so I've been feeling pretty great since the sun has been out for the last few days. I have some weird sensations, like my feet feel like they are asleep again. And I have kind of a new movement in my right quad...I can contract it and squeeze it on my own, which is a new "independent" movement and hopefully enough to get a little bit of an extension for therapy during my evaluation this week. I'm supposed to be done at KKI this month, which really stinks because I'm not sure when I'll be back. I turn 26 in July and really haven't sorted out the details or what I'm going to do for insurance and how that is going to affect which doctors I can see or what kind of therapy I can receive. Honestly, I don't even want to think about it because I'm worried, but I know it needs to be dealt with...I've kind of been putting it on the back burner, but it definitely needs to be handled soon because time is running out.

Anyways, so this nerve pain isn't bad at all when it's sunny and beautiful out, but during the gloomy, rainy days, I feel pretty much as miserable as it looks outside. It's kind of funny how much of an impact the weather has on us...not just how my body feels but it definitely takes a toll on my mood. Nobody likes leaving the house when it's gross out, but it's even harder going anywhere in a wheelchair...I can't hold an umbrella while I push myself, so I'm automatically wet unless someone is holding one over the two of us. Not to mention that my hands, sides of my shirt and pants next to my wheels get wet because it's not to easy avoiding the wet ground or puddles.

Therapy has been going well though. I've really enjoyed my time in the eksoskeleton and I've gotten more used to what I'm supposed to be doing when I'm in it. I feel like they're always giving me different commands and I get so overwhelmed! Weight shift this way, hold your leg straight here, kick this leg like a soccer ball, bring this foot up like you're stepping over a wall...it's a lot to keep up with! The pool has been increasingly better and I feel like that's where I see most of my improvement. Some days are better than others and on those days, I can bring my legs forward on my own and only need help keeping my knees straight. Other days, I need a lot more help and feel a little defeated that all days can't be good days. My last pool session went really well, though. My right ankle kept twisting and landing weird, so we did something we hadn't tried before- I had a therapist on each leg (mostly just to keep my knee straight as I brought the other leg forward) and I had complete control of my own hips. I usually need someone behind me to prevent me from sticking my butt out or using my body momentum as a compensation to bring my legs forward, but I was perfectly straight! My abs were on fire for a couple days after all this, but it was a big improvement!

Here's a laundry list of what is new and what I've been working on in therapy:
-working on my sit-to-stands (they have a long ways to go...even when someone is holding my knees, I still have trouble standing with the walker. I'm hoping most of it is just my own fear, but there's a lot of room for improvement in this area)
-Standing- I've even used virtual reality to help take some of the focus off all the effort it takes to stand and it has been going really well
-I did the RT600 for the first time in over 6 months, which is kind of like my bike. It uses electrical stimulation to make me support my own body weight to walk. There was a huge difference since the last time I did it and it seemed to go pretty well
-I'm still working on loading and unloading my chair from the car...it's extremely frustrating, but I'm determined to get the time down
-I GOT MY LICENSE!! I passed my DMV test last week! The Vocational Rehab said they are going to be able to pay for my hand controls...the only problem is that they've never done it before and I'm their first case, so we have no idea how long this is going to take. They don't do any back pay either, so I'm kind of at a stand still in driving until they pay for the controls. But once they do, my driver's rehab center is going to install them, make sure I feel comfortable, and then I'm free!
-School still sucks. I'm studying like crazy every single day and still feeling like I'm getting nowhere. I'm taking my two hardest classes, so I guess that is to be expected.
-I went adaptive indoor skydiving this week!! Spinalpedia and my friend Josh invited me for their "all abilities" night. They even had an extra spot and asked me if Dusty would do it... Dusty is very practical. He likes adrenaline and adventure, but he doesn't understand why I've jumped out of a perfectly good airplane before or jumped off a perfectly nice bridge...he hasn't even watched my videos from either experience! He told me once that the only way he would skydive is if he were only a few feet off the ground, so I was interested to hear his response when I told him about the opening for the indoor skydiving. Much to my surprise, he agreed, and even more surprisingly, he enjoyed it!! Even though we didn't go at the exact same time, it was such a cool experience to have together.

I guess that's a pretty good update for now. (Oh, and I've lost a total of 30lb!! So I should probably attach some photos as well...)

There aren't such things as coincidences

I don't believe in coincidences... I may use the phrase "what a coincidence!" but when I stop to think about it, is it really? Things don't just happen out of the blue. Things happen for a reason. Everything happens for a reason.

I chose to believe that when I'm stuck in traffic when I'm in a hurry to get somewhere, God is keeping me from something--from being involved in an accident if I would've gotten where I was headed to 15minutes earlier, etc. I believe that when things don't happen when I want them to do, God is telling me that His plan is better than mine (which is a hard pill to swallow sometimes). I believe that God puts people in our lives just when we need them, and He may also let people fade out of our lives if they aren't having a positive impact on us.

Well, God made His presence known loud and clear last Saturday morning. I had to go to Philadelphia last week to meet with one of my professors in preparation for an upcoming exam and then Mom and I stayed in York because Rachel's (one of my grad school roommates) bridal shower was the following afternoon.

I've honestly been in a little bit of a funk this past week because I've started experiencing some changes in my body. After I had that strange sensation in my feet, like they were always asleep, Dr. Pardo warned me that while it is a good sign and indicates nerve recovery, nerve pain may follow. He explained that those nerves are trying to rewire and reconnect, but the circuitry isn't perfect, so there will be misfiring. There's no way to know how my body will react, but he told me to let him know if I needed any medications for the discomfort. At the time he told me all of this, I kind of brushed it off, I could handle feeling like my feet were asleep. It didn't hurt, it was just a little annoying. This week is when that pain started to kick in. And I don't really like to call it pain, but more like extreme discomfort. If you know me, you know how much I hate to be cold and this sensation is best described as being cold all the way to the bone- the tops of my thighs, down my legs, and the tips of my toes almost feel frostbit. Maybe it's all in my head and how I like to think about the nerves trying to reconnect, but it also feels like small electrical zaps. I keep picturing an electrical wire cut in half and then trying to touch the broken ends together again. Those sparks are what I'm feeling (or convincing myself that I'm feeling). Along with this steady electrical hum or buzz. My friends always described a "buzzing" in their legs or feet and I can finally join the club...not that I'm proud of it, but at least I understand what they're talking about now.

I was extremely uncomfortable Friday night and was starting to have a little pity party for myself. I don't want to be like other patients I've talked to that stop doing what they enjoy doing or living their life and have to stay in bed because of their nerve pain and discomfort. Not wanting to go out to dinner that night because I was so uncomfortable made me feel like I was going to be like that...and I don't want this illness to take away anything more than what it already has. I'm supposed to be improving, taking my life back, not taking steps backwards. I did decide to suck it up and go out and was happy I did and was actually feeling much better once I got out of the hotel room.

So, back to my story about Saturday morning. We didn't set an alarm, which allowed for a slower start. I had to shower and the bathroom wasn't the most accessible, so getting in and out of the shower was a little bit of a struggle. By the time I was ready, it was 9:15 and we were worried that breakfast may stop by 9:30, so we rushed downstairs. As soon as we got down there, I took the closest table and Mom went to see what food was available. This man said good morning to me, then started to talk to Mom as he got his food. There was just something about this man and the way he carried himself that made me think people are easily drawn to him and I wanted to know more about why he was here, so I was happy Mom kept asking questions. It wasn't surprising when he said he does evangelical work.

Turns out, he was a retired NBA player in town with an organization called SportsPower International. It's an organization where several retired players and professional athletes conduct internationally televised basketball games, camps, clinics, school assemblies, etc. and share stories of faith, leadership and responsibility with today's youth. Mom and I ate our breakfast and about 20minutes later, my eyes caught this man's from across the room. He was with a group of people (some who were very tall men that I assumed must be other players) and he motioned for me to come over. I don't know why I looked up when I did or really why I felt like I should go over there when he told me to, but I just did. They were having a small devotional to start the day and I felt so privileged to be a part of it. The pastor and the one leading the discussion had been the champlain for the Knicks for 25 years!

At the end of the discussion, I shared my story and we all held hands as they prayed for me. I feel like people are always praying for me and I've been in situations like this before, but this was so much more...powerful. Mom and I both said that we felt like if they had prayed and said for me to stand up, we honestly think it would've happened right then and there. They said something I hadn't really thought about before...I'm using my story now to reach people, but God will be even more glorified when I stand up and give my testimony. It's all about timing and I don't think it's the right time yet.

The organization has a base in Baltimore and they invited us to come by the church if we have any free time when we're in town.

It was such an unexpected experience and it couldn't have come at a better time. Just when I was feeling kind of down and defeated about how uncomfortable I'd been feeling, we met these incredible people that literally welcomed us with open arms. I feel like sometimes, my wheelchair prevents people from getting close or kind of intimidates or scares them, but sometimes, it invites people to get close and share their story. These are the encounters that people talk about when you ask them if they'd change anything about being in a wheelchair. More times than not, people answer by saying they'd give anything to walk again, but they wouldn't change the journey and the relationships they've made along the way. This is what they're talking about.

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.