“Progress
imposes not only new possibilities for the future but new restrictions.”
-Norbert Wiener,
20th century American mathematician
prog·ress
1. a movement toward
a goal or
to a further or higher stage: the
progress of a student toward a degree.
2. developmental
activity in science, technology, etc., especially with reference to the
commercial opportunities created thereby or to the promotion of the material
well-being of the public through the goods, techniques, or facilities created.
3. advancement
in general.
Progress,
digress, regress. Trangress. So many gresses, but the one connected most to me is the first one – you
know it, you love it: progress, progression, as in “I have MS, a progressive disease.” Most of my
life I’ve been taught to associate progress with positive developments. The Pilgrim’s Progress was the first
one. In Amazon, if you search books for progress, the first title to come
up is The
Progress Principle: Using Small Wins to Ignite Joy, Engagement, and Creativity
at Work, very positive indeed. And as you can see, the majority of
the definitions above are innovative and forward thinking. How sad then for
such an upbeat word to take on such negative connotations in the context of our
health and well-being. “Your disease is progressing.” Even if the words
are never uttered by your doctor, they are floating in the air like a pink
elephant in the room.
It all gets so
confusing. When I was a child, my mom would say I was regressing whenever
I acted younger than I actually was. (Occasionally, I still behave that way and
it’s my wife telling me I’m regressing – some things never change.) The point
is, I was going backward instead of forward. Progression was a good
thing. I was supposed to be acting more mature. Too bad, then, that this
word holds such negative implications for us MSers.
Now I sit here
looking out the window from the seventh floor of my 15th Street apartment overlooking
Third Avenue here in New York City. The view south is now partially
obstructed by two ugly luxury high-rise buildings that were erected over the
last few years. You can’t stop progress,
right? Though, truthfully, I guess you could move to a different
neighborhood, even a state, where buildings do not block your view.
Wouldn’t it be
great if, as MS progresses, you could just move to adjust your perspective of
the disease? Not functioning particularly well today? Balance a little
off? Move to Brooklyn, overlooking Prospect Park! You’ll get a clearer
view of your disease,you’re your overall quality of life will improve. That’s
progress.
And so I
dream. And in lieu of changing my location to improve my quality of life
or functionality, I take the only legitimate action I have available to me: I
consume prescription drugs and lots of them. I bring this up now because
for the first time in my storied MS life, the insurance company had the
audacity to reject a request for I’ve been told is the next best drug option,
Rituxan. This after we halted Tysabri following about a year and a half
and PML concerns. Six months of applications and appeals all to get the
middle finger. Happy days. Thank you insurance company, thank you state
appeals process – for nothing!
Now I am off
Tysabri and back on Avonex as the progression continues. Even if I can’t
actually feel it, there’s usually something going on in my brain or on my
spine. Because I completely trust my doctor, I’ve also added a drug he
recommended, something called Mycophenolate, designed to help prevent
transplant organ rejection. I realize I don’t have an transplant organ (good
news for me!), but whatever works for MS, right? If I were an optimistic
individual, I’d say the cocktail of meds I take every day is having a
beneficial effect and is at least slowing down the - wait for it, here it comes
– progression of my disease.
I hope wherever
you are, your progression is slowing too. If you’ve found a way to stop it
altogether, please let me know.
Have a great
couple of weeks. Stay cool!
Peace,
Marc
marc@empirelifecoaching.com
914-715-9496
