Friday, October 13, 2017

So it has been quite a while since my last blog update.  It is hard to believe but I have been in Louisville, KY for over a year.  When I came here at the end of last July, I really did not know how long I would be here and it is actually a little hard to believe that at the end of October, I will have been here for 15 months.  I do not dislike it at all, but I do miss many things in NC.  One of the things that will make things a little more interesting here is that my friend and former teammate, Archie Miller, took the head coach job at Indiana University.  I am excited for him as it is considered one of the biggest jobs in the country and it is only 91 miles from my door.  I am confident that he will be successful at it.  I went to a lot of games while he was at Dayton and IU is about an hour closer.  I am still trying to wrap my head around wearing IU gear to support him but I am sure I will come around.
I will be honest that at times I am really unsure about continuing to be here and at times even wonder if down the line I may even regret it.  If I knew staying here would get me back some of all that I lost in 3-5 years, I would feel a lot better about things. At the same time, if I knew I would be in the exact same shape in 3-5 years as I am now, I would think differently about what I am doing. It is very difficult not knowing at all what the future holds.
On the one hand, I am at one of the few locations in the country where there is some promising research taking place.  As I have mentioned before, they have been putting an implant inside patients that excites the nervous system and allows people to be able to stand up, gain back or improve upon lost body functions, move muscles on command and even take steps.  Sounds pretty amazing right? However, I also can tell you that they first put this on a patient in 2009 and it is largely based off of technology that has been around since the 1980s. It is 2017 and it is beyond frustrating that something which could possibly help me and significantly change the lives of a lot of people is still not available, even though I am told that they have positive results in 10 people.  I am still trying to make sense of it all.  I have been told that part of my frustration is that I am moving from more of a corporate or business background or way of thinking into academia.  The rules and regulations, as well as the steps taken to validate research can be frustrating and hard to understand.
I know that a lot of it is the FDA and the insane amount of regulations they place on things.  While I understand the fear and challenges of working with or on human subjects, if you gave me one day, I promise you that I could sign up 100s of people with spinal cord injuries that would assume any "risk" and wave liability.  In some ways, it is almost like the FDA chooses to decide what they consider the quality of life and what QOL is not worth risking?  Sure, you can say someone with an injury like mine can live a meaningful and purposeful life but what about someone that has no use of their hands or cannot breathe without a machine?  All I know is that I am frustrated as well as many people I have met along the way. We are tired of waiting!
My current routine over the last few months has been pretty much the same.  I have been working about 30 hours a week and working out or receiving treatment every day.  I am pretty much in more of a holding pattern than anything else.  I am trying to keep my body and muscles in the best shape I can to be ready for these treatments when they finally do become available.  I spend a lot of time and money doing just that and try to keep the faith that one day I will look back and say it was worth it.

I think this post may come off a little more negative than my others but some of that is just the reality of things.  I often remind myself of the many ways that I am fortunate.  I am able to drive, work and live by myself and almost never need help with anything.  Of course I cannot forget that I have also been allowed to pursue opportunities to get better with the support of some generous friends and family.  I am also in many ways in a good spot here in Louisville.  In addition to Archie being closer, I also work a job that allows me to be around people and part of the team working to make treatments available to help those with spinal cord injuries.  It is something that is very convenient for me as I live 0.3 miles away from the building I work out at on the 9th floor and go to work on the 15th.  I also cannot ask for a group to be more flexible or understanding with my appointments or treatments and even my desires to make trips back to NC.
Finally, I wanted to let you know that my sister is offering to donate $10 to The Walk On Foundation now through the end of this month for anyone who joins The Produce Box using her referral link (which also gets you $10 off your first order).  She's been a member for years & just started working for them as a Neighborhood Coordinator in Raleigh.  It's doorstep weekly deliveries to most addresses in NC consisting of local, in season produce along with locally produced artisan products such as cheeses, baked goods, honey, nuts, along with higher quality meats & seafood.  All you have to do is sign up here for $10 off your first order along with a $10 donation to my foundation.  Thanks for considering!