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.