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!
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