By
Penelope Conway
Posted
on August
26, 2019 by MSAA
Multiple
Sclerosis Association of America
Chaos to someone living with
multiple sclerosis is different than chaos to a healthy person. Our kind of
chaos includes a world of broken nerves hidden deep inside our bodies. The only
problem is that there seems to be a sign posted at the entrance to
this grand attraction that reads “No admittance to the general public.”
We have no way of showing
people the latest expedition or the mammoth death-defying rides that
exist here, complete with loop-de-loops and upside-down rails. We try to
explain how they feel and what they look like—those weird moments when the
walls begin to move and the floor trips us up—but somehow our explanations of
what is happening in our world is met with disbelief, blank stares and “it
can’t be that bad” statements. But, you see, it can be and it is.
Our world is alive and constantly
changing from one day to the next, and sometimes even minute by minute. Today
we may have an electric shock jolt traveling down our spine, the carpet may try
to trip us up, and gravity may want to get in on the fun by taking us down for
the count. But we are valiant warriors and we fight on.
It’s not easy navigating through two
different worlds at once, but we do it every single day. When the sun sets and
our day is over, we discover that we have accomplished more than most
people do at the end of their day because we have not only navigated through
impossible obstacles and overcome amazing feats, but we are ready for a new day.
Our mission each day is to simply
get through all that’s in front of us no matter how bizarre it may be. Step by
step, moment by moment, day by day, we survive.
It’s not always that easy to do
either. My emotions have this tendency to run wild on me. I find myself crying
for no reason, laughing at ridiculous things and getting mad at nothing…
absolutely nothing. My brain had mixed things up and doesn’t know the
difference between a laugh and a tear.
I wish I could say it was just me
being me, but multiple sclerosis is at fault. Somewhere, deep in my brain, the
area that controls my emotions has been damaged. The communication of my
feelings and the need to express them is a complete mangled mess.
Life changes a lot with MS. It
changes in ways we expect and also in ways we never knew possible.
Sometimes those changes happen all at once and other times
they simply pile up, little by little, until we find ourselves
surrounded by a sea of change.
That’s me at the moment… overwhelmed
in a torrential sea of change. It feels like my world has been knocked off its
axis and is bouncing around inside some perpetual game of universe pong. I just
want things to slow down a bit. It doesn’t have to stop entirely; I just need
the brakes put on and for things to stop spinning out of control for
awhile.
I’m sure you understand the feeling
all too well yourself. Today you may be facing a boatload of MS changes,
financial struggles, relationship problems, emotional chaos, or a little of
them all wrapped up into one. That’s a lot for anyone to have to face.
I hope you know you aren’t alone in
this journey. I may not understand your exact struggles, but I understand what
it feels like to ache so deep inside that you can’t put the pain into
words; to dread a new day because you just aren’t sure what the day is going to
bring; to wake up in the morning wishing you could just go back to bed and wake
up from the nightmare you find yourself in; to watch your dreams get crushed
and feel as if you will never be able to dream again.
I mean it when I say I’m standing
with you. You can vent, you can cry, you can spill out every emotion that’s
been bottled up inside and I won’t judge you nor look at you with that weird
blank stare so many of us see on others faces when we try to explain what’s
happening inside.
Yes, you may be living
with multiple sclerosis, you may have a crazy mixed-up life, your emotions
may go bonkers on you, your day may be spinning out of control, but regardless
of how things look today, we are in this together and together we are
STRONG.
Life is tough. Anyone who says
otherwise isn’t really living. But even though we face some awful things in
life, there are great things happening that show up and bring relief to the
pain. And wouldn’t you know it, they happen at the very moment you feel as if
you’re about to break.
Things like a “thinking of you” card
in the mail from a dear friend, a fistful of weeds and smiles from a child,
your favorite song playing on the radio at just the right moment, a piece of
chocolate, ten minutes of silence, coffee with a friend… they are happening all
around you, you just have to pause for a moment to see them.
Today may be a tough day but don’t
let the struggle hide those sweet moments that are happening in your life.
Pause and breathe. Find something to be thankful for. Look around. There is
some good in the chaos, in the moment when you are overwhelmed. You are going
to make it through this storm. Hang in there and let those sweet pauses give
you strength to get through the day. You’ve got this. Pause and breathe. It’s
part of the recipe for a good day.
*Penelope Conway was diagnosed
with Multiple Sclerosis in November 2011. She is the author and founder of
Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to
help others navigate this unpredictable journey. She believes that staying
positive and holding onto hope is the key to waking up each morning with the
strength to get through the day.
In support of Multiple
Sclerosis (MS) research:
Twitter hashtags:
#BikeMS #brain #CureMS #demyelination
#disease #FightMS #FuckMS #FuckYouMS #FUMS
#lesion #MovingMountainsForMS #MS #MSawareness #MSAwarenessMonth
#MSeducation #MultipleSclerosis #MSstrong
#MSSucks #MSwarrior #MuckFestMS #myelin #mymsme #OMS #LivingWellWithMS #ThisIsMS #vertigo #WalkMS #WalkTogether #WeAreILLmatic #WeAreStrongerThanMS #WorldMSDay
NEVER GIVE UP!
