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.