Making My Non-Accessible Apartment Accessible

I can't even begin to describe the difficulty I had apartment hunting. Finding a place in Philadelphia that was within a reasonable price range was only the beginning. Wanting a studio, a flexible number of months, and having it be wheelchair accessible made things almost impossible. I would find places online that claimed to be "wheelchair accessible," but one look at the pictures, showing a flight of stairs, proved that statement false. Some individuals even claimed their place was 100% wheelchair accessible, but disregarded the steps required to even get inside!

I finally found a place only 5 minutes from clinic (where I knew I'd be spending the majority of my time given that I only have one class left to take on campus and the rest of my time would be seeing patients). It was within my price range, a studio right across from the elevator was available, and the staff was so extremely accommodating that I knew looking anywhere else was going to be a waste of time.

I'll write a couple separate posts about living on my own: what I've learned, what would make life easier, things I've been able to do on my own, etc. so this won't be so incredibly long. So, for this post, I just wanted to touch base on how hard finding accessible housing is and what I've had to do to make my apartment work for me.

First of all, I should not be surprised that accessible housing is hard to come by. I mean, even handicapped accessible rooms in hotels aren't 100% accessible (another topic I plan to write about at some point in time). Luckily, most apartment complexes have elevators, so the obstacle of stairs is usually easily overcome. However, there is then the issue of parking, the height of cabinets, width of doorways, and layout of the bathroom (including how high the toilet is, are there any grab bars, and is it a tub that needs a tub bench or a roll in shower?)

So, let me start with the parking. There are surprisingly only two handicapped parking spaces in my complex (and neither of them have the stripped lines next to them that allow me the space to assemble my chair). I tried to brainstorm parking space ideas with the manager, but there wasn't really a set solution to ensure that no one would park in my spot (she's tried this before and people still didn't oblige even after being ticketed). There are a lot of end spaces in the back of the parking lot, like where I can park so that my driver side door opens to the aisle instead of having a curb or anything blocking the one side. I was concerned about parking down there because it's a big hill to get to the front door and if I come in after dark, it'd be difficult to see me moving through the parking lot since I'm short and there isn't a sidewalk. She ended up giving me a key to the back door. All I have to do is park down there, go in the back door and ride the elevator up to my floor instead of stopping in the lobby. Not the best answer, but it's a solution until we figure out something better. I'm just glad they are so understanding and willing to work with me, especially after the nightmares I've heard from other people with accessibility.

Next, we have the mailbox. Of course, the box corresponding to my apartment was out of my reach. This was an easy fix, though. They simply gave me one of the bottom boxes that is easy to access.

Laundry is on the top floor and there are plenty of washer and dryers on the bottom, where I can easy use them. Trash is around the corner from my room and while I really hate having to take it over there by myself because it requires putting the bag on my lap so I can push myself, I'm glad it isn't in a dumpster all the way in the parking lot or something. (and I've actually recently discovered that if my trash isn't too full, I can just loop the handles over the push-canes on the back of my chair and drag it across the hallway).

Now we get to the apartment itself.

It's a studio, so it's the perfect amount of space for me to keep up with. The floors are hardwood, which makes pushing on it easier. It's also a lot more convenient to clean with a swiffer than to try to push a big old vacuum (I have a handheld vacuum for when it's necessary).

There's a wall of storage cubbies and shelves inside the door. There were two big sliding doors that were a little difficult for me to move, so they just took them off. I can reach pretty much everything and the rod to hang all my clothes on is actually low enough for me to utilize. (Taking the doors off actually opened up the space and made it look better, so it was a win-win).

The kitchen has a "breakfast nook" counter that I use instead of a kitchen table. Maintenance lowered it to my desired height and I'm able to do all my meal prep on it since my legs fit underneath. The oven and fridge are standard (I didn't need anything different there), but I was excited about the motion censored trashcan I bought, haha.  I have everything on various shelves that are at my height--my microwave, appliances, coffee maker, etc. I found a shelf that was perfect for a few of my most used utensils and I hung my fry pans on the wall. I have a reacher in the kitchen, so that I can get into the top shelves if I need to, but I don't keep much in them anyways.

I put this sandpaper-like tape on the floor under the corners of my bed so that it doesn't slide when I transfer in and out. I also use storage containers on wheels underneath to bed, so I can still utilize that space.

I have my couch and bed separated by just enough space to fit my chair and my equipment (bike and standing frame) fits behind the couch so that I can easily use them and not have to move anything around.

The bathroom was probably the most difficult part of accessibility. The door was just barely wide enough for me to fit through, so I had to get maintenance to use specific hinges that allowed the door to open wider. My apartment complex actually ordered a taller toilet and installed it before I moved in (probably because they overheard me joke that I was going to get a workout from how low the previous toilet was, haha). It's a really small space, but just big enough for my chair to get to everything. The plus side of the small space is that I don't need any grab bars (the sink is close enough and sturdy enough to use instead). I have a tub bench (with enough space in front of it for visitors to still stand in the shower) and a handheld/overhead combo shower head. I found this awesome suction cup grab bar to put in the shower and baskets to put my soaps in. I can't quite reach to put the handheld shower head back into it's holder, so I tied a ribbon around it and put a hook on the wall where I can reach. I keep a reacher next to the tub, so I can close and open the curtain all the way.

So, as you can see, it's not perfect. The important thing is that it's perfect for me. Maintenance and the front desk staff check on me regularly and help me whenever I need anything, like loading or unloading my car before and after trips back home. I'm comfortable and I'm incredibly happy. I was a little worried about living on my own because I never have before, not to mention living on my own now that I'm in a wheelchair. The independence I've found over the past several months is something I was afraid I'd never find again. Now, I can honestly say that life feels like it did before (plus a few minor hassles and the fact that everything takes a little longer).

I really didn't think I could be this happy or this independent again. It has definitely been the longest and hardest two years of my life, but I'm thankful every day for being one "step" closer to all my goals and dreams.


***When I say that "I" did something in the apartment or hung this or that, more than likely it was my mom that did it and had these brilliantly easy solutions to all my problems, so shoutout to the real superstar***

One hell of a ride

Two years ago today our family started on a journey that we were totally unprepared to embark on.  Most journeys that we have taken as a family begin with me (the mom) doing a ton of research so we know everything that we need to know to have a safe and enjoyable trip.  This "trip" began without any notification and absolutely no preparation on my part.

Let me back up...August 29, 2015, Kelly called me to tell me that she wasn't feeling well.  Nurses are known for being hard on their children when they are ill.  I'm not an exception to that!  I even made James pitch a game with a broken arm that I was sure he was being over dramatic about.  Therefore, when Kelly called with complaints of fever, aching and headache I told her to go to bed and she'd be fine in the morning.  It took 3 days for me to become alarmed that something may be going on that she needed to be seen by a doctor for.  Surely it was just a bug that might require some antibiotics or flu medicine to cure.  I had NO IDEA!

I watched my husband cry out of frustration that he couldn't save his little girl.  I saw my son punch walls because he was so angry that she had to go through this.  I stood in awe of the love that Dusty showed her as he played pandora for her all night so she wouldn't wake up afraid.  I stayed awake at night so afraid that her life could end at any moment.  This wasn't a journey that I was ready to take.

Two years ago today, Kelly crashed in the ICU of Winchester Medical Center and was sent to UVA for treatment of what would later be identified as ADEM (Acute Disseminating Encephelo Myelitis), an auto immune response to a virus that was most likely caused by a mosquito.  Her brain, spinal cord and every other nerve in her body was attacked by her own immune system leaving her paralyzed from the nose down.

She has since made amazing progress and is currently living independently in Philadelphia while she finishes her dream of becoming an optometrist.  She hit a speed bump (disguised as a mountain) and plugged forward to get where she needed to be.

There were days that I wondered why she/we had to go through this.  What good could possible come of such a horrific experience?  Why my daughter?

I don't have answers to those questions, but I do know that most people would not have handled these past two years with as much grace and determination as Kelly has.  Most people wouldn't have had the ability to make friends with people all over the world and encourage them in their circumstances while fighting her own battles.  Kelly has an unbelievable way of making people feel like they have known her for a lifetime.  She has "gathered" some remarkable people over her lifetime.

This wasn't a journey that we chose to embark on, but it is a journey that I learned to be thankful for.  I look back and I am overwhelmed at how far Kelly has come, but I am also overwhelmed at how much we have all grown.  I would never choose this for any of us, but I am able to see some of the good things that have come out of it.  Don't get me wrong...I would give up anything to go back 2 years and slap that damn mosquito!

We have met some of the most incredible people.  Therapists, Doctors, Friends, other patients, SCI (spinal cord injury) survivors, volunteers, nurses, etc....I can't even list them all!

Kelly is still Kelly.  Driven, focused, friendly, energetic, did I say driven...she just gets places on wheels instead of on feet.  She won't let something like her legs not moving stop her from getting where she wants to go.

I think, if someone asked me "why did this have to happen to her" my answer would be simply, because she has the ability to make the most of it.  She has and will continue to make a difference in the SCI community.  She will make most of us think twice about complaining about a sore back or an ingrown toenail.  She will fight for people with disabilities to be heard in a world that isn't equipped to handle all their needs.  Kelly will make an impact on the world because she will not fade into the background.  No, she will speak out and stand tall for all to see where she has been and where she is going.

The last two years have been one hell of a ride, but I am so thankful for those that rode the waves beside us.  I'm even more thankful for all of those that helped us tread water when we were drowning.  Mostly, I am thankful that I am the mom to this beautiful girl that won't let anything get in the way of her dreams.

Happy Second Life Day to Me

It's a weird phrase: "life day," but that's what everyone calls it..and since I don't have an "accident-iversary," the term "life day" will have to do. At times, I wish it was just a single day...just 24 hours to reflect upon, celebrate, or just get it over with and not think about for the next 364 days. Instead, I have a whole week. A whole week to remember the hell I went through. A whole week to wonder if I could've done something to change the outcome...gone to the doctor quicker, insist on different tests to be run, anything to stop that virus from attacking every single bit of me (more accurately, stop the virus before my body decided to attack itself). But I'm not really big on "what-ifs." Luckily. It's still a strange week, though. I don't want to say it's a "sad" week or a "celebratory" week, because it isn't really either. It's just strange.

It's upsetting to think about how many things could be different if none of this had happened, but it's also amazing to think back to how far I've come...and then the obvious thought of how I actually almost died on this day two years ago. That's when I'm glad that my short term memory was lost from all the brain swelling. I don't remember the worst of it all (unfortunately, my friends and family do), but I don't necessarily have bad memories or painful memories of this day or this week. I just know what everyone told me happened (and, trust me, that's enough).

I know that on this day two years ago, I crashed. They almost lost me and I had to be put on the ventilator...I couldn't breathe on my own. That thought alone gives me goosebumps. I remember the process of learning how to breathe again and trying to get off that ventilator and it was one of the hardest things I've ever done, but I don't remember my last breaths or the events that led up to needing a machine to do something for me that seems so easy and effortless.

Even just thinking about this time last year is weird. Things had changed so much in those first 365 days, but I think the changes in the last 365 days may be even more significant. That first year included milestones like: being able to feed myself, no longer being in a hospital, dressing myself, getting in and out of a car, etc. The second year has consisted of: learning how to drive, loading my own chair in and out of the car, finishing all my courses and starting back to clinic (seeing patients again!!), and living on my OWN in Philadelphia. The first year was me going from being so incredibly sick and learning how to move different parts of my body again--getting used to my new "normal." But this year has been about being "me" again. About being happy again. About not having anything holding me back anymore.

I can honestly say that I'm happy now. I tried to fake it before and put on the smile that everyone wanted to see, but I was sad. I wasn't back at school. I wasn't graduating with my friends. And I didn't feel independent. Now, I'm doing literally everything I did before. It may not be as graceful and certainly not in a timely fashion, but I'm doing it.  My whole outlook on life and how I viewed my situation changed. I think that's how it is with any life changing event. I went from being in denial, saying I didn't need to order a wheelchair because I wasn't going to need it. Or that I didn't need to learn how to drive with hand controls because my legs were going to start working. To, now, figuring out ways to make my current situation work. I finally decided that I wasn't going to waste any more time waiting for things to improve. I was going to discover how to accomplish the things I wanted to now, in whatever way I needed to get it done. And it has worked (so far at least). I've always been afraid of failure. Afraid of not getting things right on the first try. But now, I realize that it doesn't matter how many times I have to do it, all that matters in the end is that I was successful. Don't get me wrong, I have a lot more to accomplish and a lot more to figure out. I hope that in 364 days, I'm able to sit down and write another blog about how much greater things are and how the difference between years one and two seem so small compared to years two and three.

I'll say it again, it's a marathon, not a sprint. This past year has gotten me a lot close to that finish line. My recovery isn't just physical. It has involved a lot more mental and emotional development than anything and I know the race isn't over yet.

Starting a New Chapter

Tomorrow is the day. After almost exactly two years (technically, just one week short of being two years), I am moving back to Philadelphia. I was in my third year of optometry school- my last semester of classes before starting to study for boards and go out on rotations. I had been looking forward to that time in my life for so long. Of course, when we plan things in life, God laughs. Needless to say, things didn't turn out the way I had envisioned.

Out of nowhere, I got a virus that paralyzed me from the nose down and put me on the ventilator all in a mere 5 days. I was in various ICU's and rehab centers for the next 4 months, learning how to breathe on my own, talk again, and do daily functions like get dressed and feed myself. Many of you remember my posts about all of those struggles and small victories...if not, you can look back at the beginning of my blog just to see how much I had lost and how much I had to learn. Sometimes, I have to reread some of those posts in order to remind myself what I've accomplished.

With it being the night before the big move, I have a lot of things running through my head. There's definitely a lot of anticipation and excitement, but I'm also pretty nervous. I'm worried about things like: what if I can't find a handicapped parking space every night? what if I fall on the ground since I haven't perfected my floor transfers yet? what if things take me way longer than I think they will and I'm late to clinic every single day? how am I going to pump my own gas if there isn't someone at the station to help me?

I could keep myself up all night thinking of everything that could go wrong, so I'm trying to think about the excitement of being independent again instead. In all honesty, I've never ever lived completely on my own. In college and grad school, I always had at least one roommate, if not two, three or even four. I've never really been one to like being alone for long periods of time, but I think with all that has changed, maybe that has too. Not that I don't want to be around other people, but I think that the achievement of doing everything 100% on my own is the next thing on my list. It means that there isn't anything I can't do. It means that I've made it...I've gone from not being able to do anything at all (not even breathe on my own) to being able to live in a studio apartment in Philadelphia and finish my last year of optometry school independently.

I'm also reflecting on a lot this evening. I'm looking back over this summer as it comes to a close. I've gone to the beach, a few weddings with friends, countless breweries and wineries, learned how to  adaptive sail, gone indoor skydiving, and attended another adaptive surf event with Life Rolls On. I'm also looking back on how much has changed over the past year, and reflecting on what life was like the last time I lived in Philadelphia. I can't wait to tell my friends and family that they can visit me in Philly again, but not in a hospital, like the last time they came to town! I'm also hoping that I can get involved with local adaptive sports programs and possibly visit newly injured patients at the rehab facility I attended.

I'm pushing back the feelings of anxiety and stress in order to focus on the possibility of what all I can accomplish next. There's no denying that I've been dealt a pretty crappy hand, but I'd like to think that I took it and made the most out of it. I didn't let things stop me, at least not for long. I used to think it was a little annoying when people called me an "inspiration." I know that sounds ungrateful, but when you hear it enough, it almost doesn't sound like a compliment anymore. I could be in the grocery store and a stranger would tell me I was inspiring just for getting out of my house and completing my daily tasks. I've spent a lot of time thinking about how to handle these comments. I think there's a difference between just saying "you're an inspiration" and saying "you inspire me to ___." When I hear it now, I try to remind myself it's a compliment and that if I inspire someone to do anything positive, then that's a good thing. Heck, I've accomplished a lot and if I was looking at my situation from the outside, I'd be the one saying I was inspired. I hope that after this move and after getting back into clinic, people with be inspired to do something...anything. If I can do all of this, other people can too.

Where is the "support" in "support groups" ??

When something traumatic happens, talking about it and sorting through those feeling is pretty vital to getting through it. Not everyone can do it right away and everyone processes it differently, but one thing I've learned is that it definitely doesn't help to keep your emotions bottled up inside.

I think I've mentioned before how my blog started. There was a psychologist at the hospital where I did my inpatient rehab. Everyone was required to have an evaluation from her and if they needed to, they could schedule appointments to sort through whatever feelings and troubles they were experiencing. I realized the importance of having someone to talk to, but I just didn't really connect with this individual. Instead of wanting to confide in her, I felt like she was prying and wanted to know unnecessary details of my life. She reminded me of the psychologists you see on tv shows sitting on a couch, with their glasses halfway down their nose...nodding with an occasional "uh huh, I see" and then asking "and how does that make you feel?" It was all too much for me. Plus, I had enough visitors that I wasn't having any trouble talking to people about how I felt and crying when I needed to.

Anyways, Dusty suggested that I start a blog because people at home would like to have updates on how I was doing and I could also use it as an outlet for my feelings...like a viral diary almost, haha. It was very therapeutic for me to write things out and to have it documented in order to look back on. I made a lot of progress in a short amount of time, so as soon as it started to slow down, I started to get discouraged and lose track of how far I'd come.

I spoke at a company Christmas party in December, titling my speech "Celebrating Small Victories." In order to write the speech, I went back through my blog posts. I spent hours reading about how I got to eat real food for the first time, when I was able to cut my sausage patty at breakfast, and the great success of finally getting my contacts in and out by myself. It reminded me of what a great tool having my blog was, especially when I didn't want to open up to a trained professional. It's not for everyone, and when it is, you need to find someone you feel comfortable with. If not, then find another outlet like I did with writing.

I've joined a few SCI support groups online recently and it's been eye opening for a number of reasons. Let me start with some the positives:

It's a totally different point of view when able to talk to someone who has gone through a similar experience as you and faces the same struggles on a regular basis. One of the greatest things I've done is get involved in various adaptive sports not only because I love adventure and trying new things, but I've made some incredible relationships. There's just something about being with other people that have had an SCI or are in a wheelchair. It's like that with anything- it's just easier to talk to someone that has been through it as well.

I like these groups because you don't feel uncomfortable asking others about personal struggles or posting pictures about a possible sore, wondering if you should seek medical attention or figure out a home remedy.  I've learned more from other patients at therapy or other individuals in these support groups than any doctor's office or institution I've been to.

I've also made new friends. Some that I've been lucky enough to unite with in person, others that I get to talk to from a distance.

I know there are a lot more benefits to groups like this, but lately, all I've been seeing are the negatives. I've seen so much criticism and downright cyber bullying...in support groups!! I really can't wrap my head around it.

There was a post from a girl asking for tips on how to make camping easier because she hadn't been in her wheelchair before. A lot of people offered advice, like what type of air mattress to use and the brand of tent they prefer, but a guy actually posted "simple, don't go. You're in a wheelchair." I can't make this stuff up.

I've seen so many threads like this and it is such a shame. Last night is what pushed me over the edge. A man posted a video of himself doing a 35lb leg curl. His injury level is similar to mine and I know I can't even do a leg curl with 0lbs, so this was pretty remarkable. He had gone to see a reflexologist and licensed massage therapist who is known for helping spinal cord patients regain voluntary movement...some after 20+ years! I don't really understand it, but he does five sessions/one week of therapy and somehow, the combination of touching the lower back and following his therapy regimen, people are finding new movement. From what I understand, people still have to put in the work and follow their exercise program, but there are individuals that are now walking after several years of nothing. There's a wide range of progress and success, just like with anything, but you can't deny how amazing the progress videos are. Regardless, people are given hope....hope they haven't found in a long time. Obviously, because there isn't any documented research or clinical trials explaining why this man's therapy program works, there is a lot of skepticism. That aside, this man simply wanted to post his progress. Something people do in these groups everyday. It gives each other hope and encouragement and also allows people to support the person posting and tell them to keep up the hard work. In my opinion, this is how a support group should work. Emphasis on the word support. (Am I wrong?)

There was a woman that kept commenting "scam!!" "scam! This guy is teaming up with the therapist to take everyone's money!" It was so uncalled for and really got under my skin. The man that had posted the original video tried to explain that a few members of the group knew he was getting this therapy and he wanted to share the positive results he was seeing after just one day. He even said he couldn't really explain what the therapist had done, but he was already grateful he decided to go. He tried to reassure this woman that he wasn't teaming up and forming a scam, just trying to encourage others, but the cyber bullying continued. I'm usually not one to comment on different threads with my own opinion. If I say anything, I try to just be encouraging, saying something nice or I'll post things that have helped me in the past. In no way would I ever send out accusations or criticism, questioning people's intentions. That's when you chose to just scroll down the page..

I commented, telling the guy that I thought his progress was amazing and if seeing this therapist is what got him there, then I don't see why people would scream "scam." I told him that we should applaud him for his hard work and encourage him to keep going. I got a lot of positive feedback for this and the guy was really thankful, because he didn't understand all the negativity and bitterness he was receiving.

After reading that this woman doesn't have an SCI and isn't in a wheelchair herself, I commented this: "If this hasn't happened to you, then I really don't think you have the right to act like this when someone was just posting their progress. Progress is progress and I think the video speaks for itself. There are people out there scamming others and it's a shame, but this guy posted his own progress to a SUPPORT group for SUPPORT. If you don't like or agree with something, scroll past it but don't rain on someone else's parade. Those that have and are paralyzed will do anything to get back what they have lost and I don't think you have a right to take away that hope" 

The man that posted the video replied by saying "very well said and much appreciated. Thanks for your understanding and compassion. I thought that's what this site was all about but I guess not everyone feels that way."

I really just can't understand why people feel compelled to say anything negative in these groups. Like I said, where is the support in support groups? Posting criticism or negativity creates a different atmosphere. It starts an environment where people don't feel comfortable posting anything because they don't want to be called out. This isn't how we should treat each other...ever, but especially not when we are supposedly going through the same things. I mean, when someone posts about a wound that they don't know how to handle, seeking advice and prayers, DO NOT comment about how you don't understand why they let it get that bad. What good is that comment accomplishing besides embarrassing the person that wanted help? It's heartbreaking. I really hate the way technology has allowed us to hide behind our computers, saying anything and everything that we would never dream about saying to people in person.

We really need to put ourselves in one another's shoes every once in awhile...and please, remind yourself of what you teach your children- "don't say anything at all if you can't say anything nice."

Big Changes are Coming

Honestly, I've been a little nervous to write out another blog because my last two were such hits. I got so much positive feedback and felt like I really had a listening audience, that I wanted my next topic to be just as informative and captivating. There's so much I can talk about- accessibility struggles, emotional and physical obstacles, the stigma around disabilities and common misconceptions, and the list goes on and on. Those are the things I want to talk about, especially if people are listening to what I have to say, not just about me and my life (because it's really not that exciting, haha).

However, I do have a few things I wanted to mention since the last few weeks have been so eventful.

- I have been driving everywhere and have actually gotten pretty good at getting my chair in and out of the car. I no longer look like I'm struggling and have no idea what I'm doing. People still stop to help, but instead of denying a helping hand, I accept it with gratitude. I changed the way I thought about it and instead of looking at it like people are thinking I can't do something on my own, I take it as an opportunity to educate others on my wheelchair and how it works.

-I only have two courses left to take for school--and I'm taking one of the two over the next couple weeks. Speaking of school...I knew I'd be getting back to clinic soon, but everything happened pretty quickly and I now have a start date of August 21...as in just a couple weeks away!! I have pretty much only clinic time left to complete (and my three parts of boards), so that's all I'll be doing for the next year/year and a half.

-I finally found an accessible apartment within my budget and signed the lease for a year (in Philly!!) It's a small studio and I'll be living by myself. I've never been completely on my own, so even if the wheelchair weren't part of the equation, this will be a huge step. I always had a roommate or multiple roommates. This is going to be the biggest change for me and I'm a huge ball of emotions-- excited, anxious, nervous, you name it.

-I have an appointment on the 28 to trial a standing wheelchair to see if it will make things easier in clinic. I have tried a segway type electric standing chair and it was pretty awesome, but they weigh so much and I don't have a wheelchair van with a ramp. The one I'll be testing out is manual, like my regular wheelchair and only weighs about 35lb, so I'd be able to transport it myself. I'm really hoping I will like it and that it will benefit me in clinic. It will also help me cut back on therapy time outside of clinic, because I'll be able to multitask and be doing some of my required weight bearing and strengthening throughout the day.


I feel like I have a million things to get done before I move and just thinking about my to do list is exhausting. I'm also trying to think ahead about anything I might need since I'll be on my own. Little things, like do I have a laundry basket that'll sit on my lap without falling so I can make it to and from the laundry room on my own? Do I have enough reachers to put in several different places in case there's something out of my reach? Do I have a tray that I can keep on my lap so I can carry things from one place to another? I'm just trying to think ahead to all the possible obstacles I might encounter in order to try to avoid them. (So if you have any suggestions, send them my way!)

My Adaptive Driving Adventure

I've honestly never really been a big fan of driving. In the state of Virginia, you can get your permit at the age of 15 and a six months. You spend a certain number of months driving with a licensed adult and once you reach your 16th birthday and if you've passed your in-car assessment, you are free to drive. Well, I waited until I was about 16 and a half to start that process. Having a July birthday, I was already one of the last of my friends to be able to start driving, but by the time I could start, so many of them already had their full license that I looked at it as an excuse for why I didn't have to.

I remember despising go carts growing up. I was never as good as my younger brother and I never won (and I like to win at things), so it was automatically something I avoided. And don't even get me started on bumper cars. Within the first two minutes, I'd be the car stuck in a corner, getting hit from all angles. So, I think you can start to understand why I didn't want to get behind the wheel of a real car, on a real road, with real drivers. I also knew that as soon as I went to the DMV and passed the permit test, my mom was going to make me drive home...and I just wasn't mentally prepared for that!

My parents finally told me that I had no say in it and was going to get my license whether I wanted to or not (I think they were probably tired of driving me places since I was involved in so many different clubs, sports, etc. and it would also mean that I could start driving my brother to his various activities). I got a little Hyundai accent..base model, with no automatic windows or locks and I learned to actually enjoy driving...kind of. Any time someone else offered to drive somewhere, I never argued. I had no problem jumping in the backseat and letting someone else take that responsibility.

It's not until something gets taken away from you that you realize how much you took it for granted...or how much you may have enjoyed it despite what you may have thought. This is my relationship with driving. No longer having use of my legs automatically ruled me out as a driver. (On the plus side, I no longer had to be the DD, but I think I'd take that role over having to depend on other people any day).

When I first got sick, I approached driving with the same attitude I always had...I don't need to drive, other people can do it for me. Or making excuses saying that there was no way I'd be able to load my own chair... I even took it as far as to say that I didn't need to learn adaptive driving because it wouldn't be long before I could use my legs again. As time went by, my attitude started to change. I got tired of waiting for things to get better. I wanted to take control and I wanted my independence back in all aspects of my life....which included being able to get in the car whenever I wanted and go where I wanted to go.

It took about a year before I really got this process going. I was at the DC abilities expo last December when I met Tammy from DRCE--Driver Rehabilitation Center of Excellence. After telling her my story, she was so excited to get me behind the wheel. She has worked with a lot of wounded warriors, amputees (single, double, triple), and paralyzed individuals from Walter Reed and said that I just didn't understand how much driving was going to change my life. I started to hear that from other patients as well, telling me that I was going to feel like I was 16 again, regaining my freedom...that analogy didn't really apply to me and my prior experience with driving, but I understood what they meant.

All it took was me agreeing to get behind the wheel for Tammy to start getting the process started. Since my license was completely revoked when I got sick (something about being hospitalized in the state of PA, the doctors are required to report serious illnesses to the DMV), I had to start back at square one. I studied for and took the DMV knowledge exam that teenagers take in order to get their permit, but this time, I wasn't allowed to drive with just any licensed adult. I could only get in the car with an instructor that knew the hand controls.

I took a few lessons with Tammy and was really surprised at how easy the hand controls were. It seemed pretty natural. I remember being on the phone with Dusty after my first lesson and him asking me what it was like..."was it like driving a four wheeler? a motorcycle? a dirt bike?" I had NO idea what to compare it to because I've never driven any of those things! (I, again, have always ridden on the back of those vehicles). For me to say that it was easy and that I got the hang of it quickly really means that practically anyone can do it...seriously.

There are a lot of different kinds of hand controls. The ones I learned on were installed on the right side of the steering wheel and was a twist to accelerate and push to brake. There's a knob on the steering wheel so I can make tight turns with just one hand. The hardest part for me was getting used to how touchy the brake and gas were, which really isn't much different than the first time you drive any car.

I got my license a couple months ago, but had to wait for DARS--the department of aging and rehabilitative services for the state of Virginia--to pay for the controls. They cost almost 5K, so it was worth waiting for. There are a lot of portable versions and many cheaper kinds, but I was much more comfortable with the ones I was getting installed because they were exactly like what I learned on. I knew they were sturdy and dependable, unlike some kinds. I actually bought a pair of the cheap, portable ones to use in the meantime...I knew I'd want them just in case I had to drive someone else's vehicle because they can go on any car...they just clamp onto the brake and the gas. These were good for short rides, but not something I wanted to use for long trips (like my rides to and from Philadelphia).

Well....after months of waiting, I picked up my car with the permanent hand controls on Friday!!! My mom has a Dodge Charger (a nice sleek, black Dodge Charger that she got when she sold her minivan as soon as both James and I were out of the house) and that's the vehicle I modified. It's perfect for what I need. The doors open a full 90 degrees, which allow for an easier transfer, the radio controls are on the steering wheel, there's a gps in the car dash, there's bluetooth to use my phone, and the back seat and trunk are large enough to accommodate my chair and other people. The doors opening as wide as possible makes the biggest difference to me. At first, it was the only way that I was able to transfer myself in and out of a car. I've gotten much better at car transfers since, but now the wide doors are what allow me enough space to disassemble and reassemble my chair when I'm driving by myself. (Fun fact: that's why there are those dashed lines next to handicapped parking spots...for people like me who need all the space they can get to open the door wide and throw and 30inch wide chair out). I transfer into the car, then lean over and start taking pieces off my chair (there are a LOT of pieces that come off in order to get it in the car). I take the tippers off (which I still use because I haven't quite perfected a wheelie without them and I'm pretty terrified of falling backwards without them on), the side guards that protect my legs from touching or rubbing against the wheels, the seat cushion, and the bag I like to keep on the back since I no longer carry a big purse over my shoulder. I take each of those things off and put them on the floor in front of the passenger seat. I then move my seat back a little and move the steering wheel in all the way (another great feature of this car is how movable everything is...the steering wheel goes up/down, in/out and the seats don't just go front and back, they also go up and down). Then I fold the back of my chair down and take both wheels off (which I put in the back seat). Lastly, I take the big frame (all 25+lbs of it) and bring it across my body and into the passenger seat. Now, obviously, this doesn't quite work if anyone is in the car with me, unless they want to ride in the back, but that's when I take advantage of letting someone else disassemble it and load it into the back. It takes me about five minutes to do all of this, but it's getting better every time...and I'm getting a little less bruised up each week.

(A little side note: my brother got in a car accident in my car shortly after I got out of the hospital and it has been un-drivable since...not that I'd really be able to use it now anyways since it is so small, but yeah, when it rains, it pours, and this was just another unfortunate event to add to the pile). 

I've had a lot of people ask questions about my car or how I'm able to drive, so I thought it was a good idea to explain it and give everyone a better idea. Truthfully, I kind of like the hand controls even better than when I used my feet. It's crazy how we don't really appreciate things until we can no longer do them and driving was one of those situations for me (among many other things these days, but that's a conversation for another day).

Stop Raining on My Parade

I just have to get this off my chest because I'm tired of holding it in. I've had so much support, but the constant questions of "when are you going to walk" or "when are you going to do ___" are actually really discouraging. I find myself holding a lot in these days because I don't want to make other people uncomfortable or because I'd rather choose my battles and what's more important to complain about, but this has been beating me down for awhile now.

Spinal cord injuries are not like a broken bone. It's not something you get surgery on and have a set recovery date or timeframe. The nervous system just doesn't work like that. Every single spinal cord injury is different...you can take two people with the exact same level injury and even they will have different abilities or recovery. I've been fortunate enough to constantly get good news from my doctors, but I think people misunderstand what good news means. People think that my "good news" should be that I'm going to be walking any day now and that's not really what it's about. To me, improvement is improvement, no matter how little or small. I mean, there were times not that long ago, that medical students were taught that when there is damage to the spinal cord, there is no recovery. If you keep that in mind and then remember that I had complete inflammation of my brain and spinal cord--the WHOLE thing-- then for me to be where I am today is pretty amazing.

I always forget that I actually almost died. DIED. As in, there was a night where I crashed in the ICU and they almost had to call the code and all the staff ran into my room, then prepared my friends and family for the worst. My mom almost killed a resident and my brother almost broke his hand from punching the floor. (Just to put things into perspective a little).

What people don't understand is that if you hear the same thing enough times, you're going to start believing it. If you ask a person enough times when they're going to walk, nothing they accomplish is going to feel like a success unless it's that one thing.

I had all of my six month follow up doctor's appointments this past week and got some really great news. My urologist said my bladder function is stable and pretty much back to normal (that may be TMI, but trust me, this is one of the biggest blessings...so many people become a slave to their bladders and either avoid leaving the house for the fear of having an accident or are constantly watching the clock in order to be on a schedule of when to visit the restroom). My neuro-immunologist at Hopkins was extremely impressed with my progress...so much so that he told me about five times throughout my appointment. He thinks my level has improved from the last time I saw him and reminded me that this isn't a sprint. My recovery is a marathon and it doesn't matter how long it takes, but to remember that it's going to happen. He also reminded me to keep a positive attitude because that is such a crucial part in my recovery. These days, I have to fight harder and harder to keep that positive attitude because I feel like I'm constantly getting beaten down (which is why I feel like I need to write this). Lastly, my rehab doctor said he was "very very happy happy happy," which was meant to be better than the previous doctor's comment of being "very impressed." I told him that we thought my injury level had improved and he decided to do a detailed exam to figure out the exact level.

I wrote about it before, but the test is called an "ASIA" exam. It stands for the American Spinal Injury Association impairment scale and is a detailed way of classifying a spinal cord injury. It's not prefect because SCIs are so various and just because two people have the same score, they won't necessarily have the same function. Anyways, you can read a little about it here. Basically, they examined light touch sensation (can I feel something touching me), sharp vs dull sensation, proprioception (where my body is in space, i.e. if my toe is bent up or down), and then motor function and if I can move different muscle groups. There are a lot of different nerve tracts and those tests check to see which of those tracts are working and at what level they are impaired. These test were performed at each level of the spinal cord and I changed from T4 to T9, according to my previous exam.  And what's really awesome is that S1 was intact on my right side, which means everything is intact and slowly coming back. (Also, if you look at this chart, you'll notice how imperfect this test is. I have all autonomic control on the left side and some functionality from the T11-T12 and L1-S2 groups, but the grade for the exam is the last place everything was completely normal.)

This is a HUGE change. But I think what is disappointing is that unless you've been through all of this or have the knowledge of what all this means, you don't understand what a big deal this is. People may hear that and still say "but you're working so hard, why isn't it even better?" Like what I'm doing isn't good enough...and then I start to believe it. I want more too. I mean, I understand. If someone posted a Facebook status two years ago saying "I changed from T4 to T9!!" I would have had no idea what in the world that meant, so I try to educate people and not let it get to me (easier said than done).

Maybe the misunderstanding came from me telling everyone that my MRIs are normal and that my doctors said I'll make a full recovery. Maybe it's my fault that I didn't explain it could take years. Yes, years. People also think that means that I'm going to do therapy 24/7 until it happens and that's just not true. I've grown a lot and I've come to the realization that God is in charge of my life and when things are meant to happen they will. I'm not going to waste away my life waiting. I'm doing everything I was doing before I got sick. I'm finishing school, I'm driving, I'm looking into moving out on my own. I'm doing it all. Hell, if I never walked, shouldn't this be enough? Which brings me to another point. As long as I'm happy and doing everything I would have done before, taking my life back, why would it matter if I stayed in a wheelchair? It's just a mode of transportation. You use legs, I use wheels. Stop feeling sorry for me. I'm happy. I mean, I have my struggles and this world was not made to be accessible, but doesn't everyone have struggles? I'm not going to dwell on them and I'd really like for people to stop thinking that I should.

I asked all of my doctors what I could do differently or if there was anything I could do to speed things along and every single one of them almost laughed. I'm doing everything I could possibly do. Matter of fact, one told me I was doing a little too much and that I need to give my muscles a 48-72hour break between using electrical stimulation on them. So the answer is time. It sucks, but that's life. And I'll say it again, I'm happy.

Overwhelmed is an Understatement

I seem to be back to doing what I do best--committing to way more than I can handle! I must think that there are way more than 24 hours in a day (and also forgetting that I enjoy getting my 8 hours of sleep every night, making the hours I'm up and functioning even less). Let me back track a little. I went up to Philadelphia to my school a couple weeks ago. They were offering a four day CE (continuing education) class for about 50 doctors and professors. Since the class was one of the 0.5 credit courses I needed for my transcript, I was invited to come and participate. It was a little intimidating to think about...taking a class with the professors that have taught me everything I know and are already established doctors, but I was also excited to come back to campus for more than just a day trip.

I booked my favorite, very accessible, room at the Sheraton for three nights and my friend, Carly, stayed with me the first two. She was taking the same class as me and we needed to do some catching up since we hadn't seen each other in months. Mom dropped me off at the school on Thursday and Carly drove me to and from the hotel for the next couple days. (I'm still dealing with the vocational department to pay for my hand controls, so even though I have my license, I have to keep waiting).

It's such an amazing feeling to finally be completely independent again. It's crazy the things that we take advantage of on a daily basis. But when I'm in a place, like the Sheraton, that is fully accessible, I feel like myself again. I don't have any limitations (except for when I dropped the shampoo bottle under the sink and couldn't reach it). And then being back at school just reinforced that feeling. I sat there in lectures thinking "yeah, I'm in a wheelchair, but I'm doing this. And I'm going to be a doctor." I felt more determined and empowered than I have since I got sick.

Before I left to go home, I got to visit the new clinical skills lab. One of the professors asked if I wanted to come see it because it's now accessible. I asked "for the patient or the doctor?" because I had a feeling it was only for the patient, but I was told it's accessible for BOTH! The lab isn't even open for students yet because it is so new, but I got the grand tour and I loved it!! I was able to get around all the equipment and slide in under the tables without any problems. I had a couple suggestions that would make my job, as the doctor, a little easier in regards to reaching the microscope while the patient was in the exam chair, but all of the professors were really receptive to my advice. They spent a long time helping me problem solve and we talked about what changes we could make for when I come back and start doing exams.

Speaking of coming back to do exams...I got to talk with a couple of the deans and professors in charge of my education plan. In order to keep my financial aid in check and my loans in deferment, I have to complete the two classes I'm taking by July 5. Everyone was worried that was asking too much of me, but I had to tell them that I'm willing to work hard and get these last few classes over. As long as I have a deadline, I can make it work. It's when everyone tells me "do this when you're ready," that I start to think I have all this time on my hands. But anyways, we came up with a deadline. July 5. So, I got home and took the midterm for one of my classes and got an 85 (!!) and have been studying for the two finals ever since. The tentative goal is for me to finish these courses and move back to Philadelphia by the end of August to start making up some of my clinic time. I have clinic hours I need to make up and then I will be able to do my third year rotation there as well instead of having to move and then come back. We also talked about possible sites for my other rotations that were closer to home. I don't like to get too excited about these things until they actually happen because this whole process with school has been trial and error. Just because we make a plan to do something, doesn't mean it actually happens or that it happens in a timely fashion. But for now, I'm getting through these 40 hours of lectures and taking the finals for the hardest courses in optometry school. Fingers crossed that the clinical aspect will work out the way we want them to. I guess only time will tell over the next couple months!

Come Sail Away With Me

After doing the indoor skydiving last month, my friend, Josh invited me to a sailing clinic in Annapolis. He is the founder of SPINALpedia, a social mentoring network that brings together people within the spinal cord injury community and also has a video archive so people can share their knowledge and experiences with each other. He tries to set up a lot of different adaptive sports and activities for individuals and families. He mentioned this sailing clinic and I honestly wasn't that interested at first. I love being on boats and on the water, but I knew nothing about actual sailboats. As the time drew closer, Josh was persistent in asking me to go and learn about "adaptive sailing." When my housing arrangement with friends in Annapolis fell through, he even offered to pay for my hotel during the two nights I was in town. (He made it VERY hard to say no!)

The more I thought about it, I realized that this clinic would be a perfect distraction. My graduation from optometry school was scheduled for the 25th and the timing of this even couldn't have been better. I had toyed around with the idea of actually going to graduation because my roommate and best friend, Annie, had offered me her extra ticket. I wanted to go to see all my friends and offer my support, but after more consideration, I realized I would just be setting myself up for heartbreak. Becoming an eye doctor has been my goal since the third grade. All those years of school and hard work were supposed to come to an end in May 2017, I'd been looking forward to it for what seemed like forever. And while I would've been happy for my friends, I think I would have found myself feeling sorry for myself.

The adaptive sailing clinic was put on by an organization called CRAB--Chesapeake Recreational Adaptive Boating. They work a lot with wounded warriors, but I think this was one of the first clinics with just individuals with spinal cord injuries. Words can't even describe how amazing this experience was. We got classroom instructions, starting with the basics, like the parts of the boat. We took everything we learned onto the water all in the same day. I loved being able to learn and then put that knowledge to use and practice right away.

There were two SCI individuals and an experienced skipper on each boat. We had seven people with SCIs, so there were three boats and then Josh had his own boat. Since he doesn't have much hand movement, they had a boat that was controlled by a straw! There are wheelchairs like this, called "sip and puff," where you sip to stop and puff to go (or the other way around?) but I had never imagined a boat being operated like that! Even better is that Josh is very successful as a lawyer and in his business, but said that operating that boat was the most independent and powerful he's felt since his accident. And it's true. I'd tried my hand at a few adaptive sports and I like them all for different reasons, but being in that boat on the water was the most freeing feeling...having total control of the boat and just focusing on everything we had learned in order to get it to the destination we wanted was incredible.

I think what made the clinic even better was the people I met. I don't think you can really understand unless you've been there, but being around other people in wheelchairs made me feel a sense of normalcy. It's one of the only groups of people you can be around where the focus isn't about the wheelchair. You have people you can joke about your struggles with, share experiences, and learn form each other. I haven't really gotten to experience that much because I've only been around others in wheelchairs while in therapy, and that's just a different setting.

We went to happy hour and asked for a table to accommodate four wheelchairs. I hadn't done that before. I'm usually the only one, which means that all the attention is on me. When I'm the only one in a wheelchair in a group of people, everyone feels the need to go out of their way to make sure I'm "okay." While it's nice and I'm thankful that everyone looks out for me, I like going out in order to get away from all the struggles my health brings. I don't like all eyes on me or when people think it's okay to come up and start asking questions about what happened or congratulate me for getting out of the house. (This seriously happens and I swear people think that if you're in a wheelchair, you should be at home wallowing in your own pity). It's hard to explain, but it's almost like because there were four of us, no one really paid attention. I didn't feel "out of place," like I sometimes do.

While I was extremely thankful for this opportunity to learn how to sail, I was even more thankful for the new relationships I formed.

**On a side note, the clinic was cancelled for Thursday due to the predicted bad weather, but I stayed busy (Mom made sure of it). My friends still texted me to let me know they were thinking about me and that the day wasn't the same without me, but I surprisingly felt pretty numb. I didn't shed a single tear, which is pretty uncharacteristic of me in times like that. Maybe because I know that it'll be me crossing that stage and wearing my long white coat with the inscription of "Dr. Kelly Morse" in the near future (or maybe it was the wine and chocolate I was indulging in), but regardless, I didn't throw myself a pity party.

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.