Inspiration can and has come from the most unlikely of
places. My latest inspiration has come
from of all places the airport and the plane ride “home.” These days especially during cold and flu
season, traveling stresses me out. Every
time I hear somebody cough, I freak out and part of me wants to go into panic
mode. Germs are all around us and I’m
kind of REALLY immunocompromised.
My good immune system first of all isn’t as strong as it
should be so it can’t fight off things like it should instead of attacking the “bad
things,” it just attacks my body causing all this autoimmune disease fun. Maybe for Christmas I’ll get my immune
system some directions or maybe even a GPS so it stops getting lost and
attacking the wrong things?! I’ll have
to work on that…
I know that I’m supposed to wear a mask, especially in
airports yet it makes me feel kind of uncomfortable and self-conscious. I mean yes the mask isn’t the most
comfortable thing in the world, but it’s more that doing that is a physical
sign that something is wrong with my body.
One of the best things yet one of the worst things about lupus or my
newest diseases are that “I don’t look sick.”
If you saw me traveling yesterday, I would have looked like
any other weary traveler. I like that as
long as I can conceal and try not to feel, I can “pretend” to be normal and
healthy. Unless you saw what was in that
perfectly pink and flowery luggage I was wheeling behind me (suitcase
completely full of meds and medical equipment) or that I obsessively wiped down
everything with Lysol wipes or me using hand sanitizer like a champion or when
I put my face mask on, that one would realize ohhhh there might be more than
meets the eye…
The other things can pass for just anyone else with maybe
some germaphobe tendencies. The face
mask might as well be a flashing neon light saying HEY YOU LOOK AND OBNOXIOUSLY
STARE AT ME. I’ve had some of the most
interesting encounters while wearing my super awesome mask (it has colorful
flip-flops on it). Typically they look
at you like you’re carrying swine flu plus MRSA plus pneumonia and for good
measure you’re also trying to bring the plague back. Well actually sir or madam I have an immunodeficiency
and this is to protect myself from idiots like yourself who along with your children coughing everywhere are driving the germ express. Infections can make me really sick really
quickly and I’d rather not spend Christmas in the hospital.
But last night as people were getting off our plane, I had
the most magical encounter with a family.
There was this cutest little girl who was getting home from her Make a
Wish trip. I’m guessing this child has
had an organ transplant because her parents had on t-shirts about the
importance of donating life. Anyways her
mom said to her, look at her wearing her mask like she should be. What a good role-model for you. This little girl was so stubborn and hated
wearing her mask too. But she saw me, “a
big kid” wearing the mask and seemingly okay with it and I think something
clicked inside that little girl.
Such a brief encounter, but that moment something clicked
inside me too. I’m sitting there in a
mask and I realize for goodness sake, I can’t be embarrassed or ashamed or
insert word here because I have to wear this thing for my own health and
well-being. I know I’m a feisty and
stubborn individual and I realized that I’m being ridiculous. I need to take a stand. I could either slink over in my seat embarrassed
by my situation or I could proudly rock a mask like nobody has rocked a mask
before...
Those that are closet to me probably already know which
option I’m going to choose. I rocked
that mask through the rest of my airport experience. I am going to become a voice and a face of
lupus and sjogrens and celiac and CVID.
Well maybe I can’t tackle them all at once, but I’m going to do what I
can.
I want to use my story to raise much needed funds for
research so better treatment options can be found. I know I already spread a little sparkle and
glitter everywhere I go, but I also need to be spreading awareness too. I’m dreaming big and I want to become a voice
on Capitol Hill. I want to educate our
law makers about the harsh realities of lupus life and encourage them to
support lupus research. I want to share
my stories in a perfectly purple ball gown at lupus galas and fundraisers.
No comments:
Post a Comment