What Scares me More than the JCV and PML?

I
was sitting down reading a self help book (I was curious!) and I
started thinking. You know what scares me more than the idea of
catching the JC virus and developing PML? It’s not death, it’s the
idea of not moving forward in life; growing stagnant. I really
want to progress in this life and something like a health
complication can cause time to stand still. My time has stood in
place long enough and I desperately feel the need to catch up in
life!

I
am 24 years old and I look around at all the friends I grew up with; they are
all getting married, having kids, graduating college, establishing a
stable career, etc. Then I look at myself; I am not even sure what I
have that holds any value in this society? Granted, yes, I did get
dealt the MS card and it’s a card I will for ever hold in my hand but
at what point is that no longer an excuse? I moved to Colorado with
the intention of starting a new life from scratch; Getting a job, a
new car, a place of my own, and so on. Then this JC positive crap
comes into play and all of a sudden I am suspended in time once
again.
“How
bad are my levels?”
“If
I stay on Tysabri will I be monitored closely enough to prevent PML?”

“If
I get off Tysabri, I will
rebound which means I can’t get a job now or else in 4 months I am
back on disability”
“I
already have to play the hunting for a decent neurologist game?”

“Will
life ever stop digging trenches and building bumps in my planned road
to success?”

So
many questions that have never really crossed my mind are now all I
can think about. I have had 17 infusions (I think)… this should not
be happening so soon! It has not even been 2 years! Sometimes I think
“It’s not fair, I am just trying to start a life” but that’s such
pitiful thinking… There are people out there, many people, who have
far worse situations than I do who can make it all happen, so what’s
my excuse? I’m tired? I’m in pain? I can’t find a good doctor?
Please! It’s rather pathetic if you ask me. I have always been a
logical thinker; a problem solver – I took engineering classes for
3 years in hi school!
What did I learn back then? If you have a goal
then you do what you have to do (no matter how many times you may
have to change a factor) to get to that goal. I need to reawaken that
mentality so that my efforts to reach my goals in life are like water
flowing down a slope of many grooves. Water will always find the path
of least resistance to get to the bottom, which in this analogy,
represents my goals.

Even
when coming up with the logical answer to what I should be doing
right now there is still a part of me that is scared. It’s natural,
we as people fear the unknown and with this new JCV factor popping
into my life, there are a hell of a lot more unknowns than I started
out with coming to Colorado. I can’t see a clear path anymore and
since I am a visual person, maybe I need to make a bunch of lists
with all my goals and what I need to do to achieve them so that I can
physically cross them out and feel like I really am moving forward?
Perhaps then I will see things more clearly again and my confidence will be restored because right now I may
not be stressed over this turn of events in my health, but I sure as
hell feel less confident and more hesitant to move a single piece on
the chess bored of my life.

Again I think it is time to post this quote somewhere I can see it
everyday to really keep me motivated; “In the end everything will
be OK, if it is not OK, then it is not the end”

2 Responses to What Scares me More than the JCV and PML?

  1. Matt,
    I hope for your sake you stay stable.

    Keep strong and don't let this new revelation overwhelm you.
    ��

  2. Thank you, BUT, keep an eye out for a post TONIGHT, I just found some stuff out and I am in such a…. humorous mood? Not sure if that is the right adjective, but seriously, lol, just wait for my next post!

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