Saturday, March 27, 2010

March Update from Brian

I had some follow up appointments at the Charlotte hospital where I was four months or so following the accident. I try to get in and out of there as fast as possible. That place is just depressing. I hate it there and I have no idea how so many people visited me there so frequently. It is not so much that I was there for so long but it is seeing the people at the hospital, so many are just so beat down looking and I can't help but even wonder what they even like about life.

I remember being told by so many staff while there that I had one of the best attitudes of any patient they had ever had. I guess it was because I never really complained and did everything they asked of me with pretty good effort. I do not think I had an exceptional attitude, I was just doing what I felt I should be doing--my parents raised me to be respectful and I figured what good was not getting out of bed to do rehab going to do? I guess a lot of other patients would refuse to participate or even get out of bed. Not that I blame anyone, I was in shock as well with what was going on and many days it would have made plenty of sense to stay in bed. I guess my involvement in athletics makes me unable to understand how you could think any other way though.

I remember just passing by people and seeing them just randomly break down crying hysterically. I admitted before that I cried once or twice but I am very good at keeping a calm demeanor and holding things inside and it was tough to see how upset so many people were.

The last few months I was there I did everything for myself. I would not let anyone help me get up in the mornings because that is just how I am. I like doing things for myself and I struggle accepting and getting help of any kind. I remember the staff even running out of things for me to do in therapy because I had already done everything they cover. I think that is why the slow progress with my recovery efforts is getting to me because I kind of expected to get better and be ahead of everyone else. Unfortunately, there are no guarantees with this stuff and every injury is so different that it isn't worth comparing yourself to others but I can't help myself. I hope that this type of stubborn attitude does payoff at some point.

I do like living by myself and even being by myself but sometimes I think being alone so much just makes me think about things too much. One idea I jokingly just think about it is just becoming the "crazy wheelchair guy." This would mean just embracing and accepting this "life" (note parentheses here because I'm just not going to call this living right now). I am thinking to do this maybe I should get a power wheelchair, wear some short shorts, velcro shoes, and a fanny pack. Also getting hair as white as my father's and maybe even wearing a headband would make sense. I could just go live in a 200 square foot studio apartment, eat canned food (that's about all you can eat with social security), write poetry, speak gibberish, and scare people by talking to myself. I guess I'm not quite ready to go there yet though!

I am sure in a future blog I will go into how I have an almost full-time job fighting with insurance on a pretty much every other day basis. As much as I get frustrated with my provider, I am thankful they consider the Krieger Institute in Baltimore, Maryland, "in network." Without insurance, two to three weeks of therapy would cost $30,000. With my insurance it will cost around $5,500, though I am still exploring financially reasonable accommodation options. I am excited about going and it looks like I'll be headed there in May following the golf tournament being hosted for my benefit and to help pay for this trip by some great friends.

This therapy trip will get me in front of another set of eyes, a set of eyes that are renowned experts in this field and are about as confident as anyone that you can work to get back function. They worked a lot with Christopher Reeve, who had about as bad an injury as you could have, but before he died they assert that through intensive therapies he recovered 70% of his sensation and 25% of his motor function. This, of course, does not happen quickly but the goal is to develop a plan to continue at your home base, so I will look forward to their collaboration with Race To Walk to see what we can do.

I continue to be blessed and amazed with the support I have gotten. Without the help, I have no idea what I would be doing with myself. I have tried to reach out to everyone personally but I never think I am showing enough thanks. I hesitate to say that I can credit everyone of you with preventing me from becoming "crazy wheelchair guy," simply because I know so many of my friends want to see it (though temporarily), but again, thank you.

I'll be sure to keep you posted on how things are going next month and look forward to seeing many of you at the golf course on May 19th.

Monday, March 1, 2010

February 2010, Update from Brian

I recently decided I am going to try to post updates to this blog as close to a monthly basis as possible. I am little behind with this post since I was working through some computer issues...

I am so over the cold weather that is starting to feel like will never end. I have always hated the cold but I hate to admit that for a while I wanted it to stay cold because the warm weather just made me miss things I used to do with the warm weather.

I am still here in Mooresville and working out at Race To Walk five days a week. I am pretty much here in Mooresville on my own. I have family and a few friends in Charlotte but it is about a 45 minute drive for most of them. Not having friends or family here or a car has made for some quite memorable experiences. I take public transportation to Race To Walk every day. The transportation service is through Iredell County. They are scheduled to get me to Race To Walk at 11 am and pick me up at 5 pm. Apparently this means they can pick me up as early as 10 am and I have been picked up as late as 6:30 pm or not at all (and I live maybe 1.5 miles from Race To Walk).

I have had several interesting conversations with the Transportation Supervisor and have gotten a decent handle on the inconsistency but it has been a little frustrating at times. As annoying as it can be I am lucky to have it. It usually gets me where I need to be (Race To Walk) and it costs me $1 each way. Since I am doing my best to conserve funds for recovery, I do not know what I would do without it.

Since I use this about every day, I have gotten to know several of the drivers pretty well. Since I am usually the only passenger on the van, I talk with the drivers quite a bit. I remember the first day I used the service and how I got into a conversation with the driver about my accident and what I was doing at Race to Walk and how I never thought I would be living in Iredell County and riding public transportation. When I unloaded from the van the driver asked me how my first ride was and I jokingly responded that I felt like I was riding the short bus to school. Oops-- she quickly said, “You shouldn’t say that, my son is deaf and autistic and he rides one to school.” I felt bad (another lesson learned) but she wasn’t mad at me and has become my favorite driver.

I mentioned in my last post how slow physical progress is and how patient you have to make yourself be or I think you would just set yourself up for disappointment and drive yourself crazy. I can say that over the last few weeks I have actually noticed some improvements. My balance, due to increased core strength, has gotten better. I was in bed for so long that sadly even sitting up straight had become challenging. Most recently I can feel my glut/butt muscles starting to fire, which will be a pretty big deal if I can get them a lot stronger. I think back to being in the hospital and not being able to feel below my belly button and now I seem to maybe be on the verge of getting my glut muscles back.

It makes me feel good to see this progress and makes me remain thankful to everyone who has helped me have the opportunity to even be able to go after these gains, especially considering how these are entirely out of pocket treatments not covered by insurance (but that's another post for another day). It costs about $1600 a month to go after gains such as these, which is a lot of money, so I am encouraged that the investment seems to be showing some signs of payoff. I know I cannot do this forever but I hope to give it about as much of a shot as anyone can.

I know many of you have heard me or others talk about my plans to attend therapy programs at The Shepherd Center in Atlanta and I still may end up going but it looks like things are shaping up to have me attend a program in Baltimore, Maryland--Kennedy Krieger Institute, affiliated with Johns Hopkins University. I may be there as early as April. I should have more concrete details and info to pass along in my next post about what's next.

Until then, I will continue to work hard at Race To Walk and explore what options are available to me on all aspects of my recovery.

Again, I have to say that without each and everyone of your help, I wouldn't even be able to experience these recent encouragements in physical gains. Thanks again to all of you for your continued support.