Looking your mortality square in the eye is an odd sensation.
I’m not talking about the sense of our
mortality we have when we lose someone we love, nor the simple understanding of
the fragility of life. I am referring to
the bone-chilling circumstance that brings us face to face, looking dead into
the eye of our own mortality. As
redundant as it may sound, it is life altering.
You can’t help but feel like you are knocked a little left of
center. Depending on your age, the
reason for the encounter and so many other variables, it only stands to reason
that one’s reaction will vary wildly.
For me it seems, facing my mortality as a result of Cushing’s Disease
has become much more common place than I would ever have anticipated. It has become more like an all too familiar acquaintance
that you are not so fond of that is somehow always standing nearby when you are
extending an invitation - and so - they are always part of your social
events. Like it or not…there they are,
and damned if they aren’t the most reliable one of everyone – the one that you
can count on showing up every time! Then,
somewhere along the line, the uncomfortable becomes the norm. That is exactly the relationship I have with
my mortality as a result of this awful disease.
I remember clearly the first real encounter I had with my
mortality – the first time in my adult life that I was aware that I might be
living the last precious moments of my life.
It wasn't during the signing and notarizing of my living will, last will
and testament, medical directives or while writing letters heart-felt letters
to my loved ones to be distributed in the event that I did not wake from my
scheduled pituitary brain surgery. Nope! I had felt the significance of those events,
but somehow the impact I expected was not so severe. Yes, it was the end of my life that I was
preparing for, but it hadn't impacted me like I thought it would.
However, about a week prior to my surgery, in
a very weakened state, vision almost completely inhibited, extremities swollen
and almost impossible to move, I had the sudden urge to wash my car. It was a warm May afternoon, and all the signs
of summer were abundant. I took pride in
keeping my car clean and well cared for, and I suddenly NEEDED to wash my
car. Despite not being able to hold my
arms up long enough to brush my teeth, and being so atrophied that I couldn't
walk to the kitchen without stopping to rest a couple time, I was dead set on
backing my VW Jetta out of the garage, getting the hose, bucket, soap and
sponge out and washing my car. I was
exhausted almost immediately. Within
minutes, I was sobbing from the pain and effort that it was taking to take on
this chore. But, I kept going. The pain was intense and my quiet sobs
continued. Somewhere along the line, the
enormity of what I was doing set in. I was
potentially washing my car in my driveway, in the warm summer sun with the
garden hose in my bare feet for the last time of my life. It
was like being socked in the gut. By sobs
became frantic and guttural. Before long
I was literally wailing uncontrollably.
I was doubled over gasping for breath when my neighbor cautiously
approached and asked if I was alright or if I needed help. I whirled around to meet his concerned gaze
that quickly turned into astonishment when I yelped between gasping for breath,
“What if I never get to wash my car ever again?!?” Astonished, he sputtered out
something along the lines of “let me do this for you” or “I can help you” which
was of course met with my ever rising screeches of, No! No! I can do it!
I want to do it! What if this is
the last time I ever do this?!?” My poor
neighbor, eyes the size of saucers, excused himself with a meek, “I understand.
Come get me if you need me” and hastily scurried back across the street and
closed his garage in record time. Undoubtedly
praying that I did not, in fact, take him up on his offer and come over and ask
for any help! That was my first vivid
encounter with my own mortality.
Since that occasion, it seems as though facing my mortality
is much more common place. I am all too
familiar with my mortality and that frightens me. In recent months, (over the past 18 to be
exact) I have seen the evil that is Cushing’s Disease rob this world of too
many precious people. It happened again
this past weekend. It is soul crushing
on so many levels.
Obviously, it is painful to lose friends to this disease knowing
that the only offense they committed when it came to their health was relying
on medical professionals that failed them in their quest for help. But more damaging is that these instances are
becoming more and more common, and worst of all, there are few in my life that
get it. They don’t get it and they don’t
want to. No one wants to acknowledge
that this Disease can kill me. No one wants
to understand that this isn’t about eating too much, being lazy, or simply not exercising. It seems much easier for others to make a judgment
based on what they see. It is easy for
in-laws to make comments like, “I wish I was as self-assured as you and could
just not care what I look like.” It is
much more understandable for friends to say, “ If you wanted to be healthy and
do more, you could.” What seems to have
escaped everyone’s attention is this one simple little fact. CUSHING’S KILLS! Just like cancer, without discretion and
without mercy, Cushing’s can and will kill!
Did you know that? Did
you know: “Morbidity and mortality are
higher in patients with Cushing's disease, with vascular disease a frequent
cause of death.[2,32,33] Cardiovascular complications, including coronary heart
disease, congestive heart disease and cerebrovascular events, contribute to the
morbidity and mortality of patients with undiagnosed or untreated Cushing's
disease.[34,35] Early diagnosis and successful treatment of Cushing's disease
is therefore most important.”
They scary thing about that statement is that despite the
knowledge that early diagnosis and successful treatment are vital, the medical
community that we rely on to treat and help us are amongst the most uneducated
and unaware about Cushing’s Disease. How
then do we expect anything less than to continue to be faced with our mortality? Can we dare hope for anything other than
dying at a young age? Is it just a pipe
dream to want a full and satisfying life?
These are the questions that I contemplate. But, what I really want people to know, is
this: Does anyone really care?
People continue to befuddle me. This past week, I posted a random snap shot
of my kitchen cabinet contents – an antique jar collection that I am proud of –
and within a very short time, I had multiple comments and a ridiculous amount
of ‘likes.’ The same thing happened with
a photo that I posted of me and my hubby.
I was astonished by all the activity it received. Don’t get me wrong, I understand that it what
social media is all about, and the narcissist in me loved the attention. But here is the part that really got me. Shortly thereafter, I posted a sincere post
about my friend who went to sleep Friday night and didn't wake up – losing her
life to the effects of Cushing’s on her young body – leaving her 4 year old son
in the world without his momma – all because her medical team failed her. This seemed like a post worthy of some
activity. I could only imagine that
maybe people would realize that this daily battle I wage with Cushing’s Disease
will potentially cost me my life. My
husband even re-posted my post, with kind words about what I cope with. I was certain that this realization would
help others understand what he faces as a result of my battle. But, you know what happened? Do you think 31 people responded like they
did to the photos of my dogs, or did the 25 who responded to the picture of my
cabinet contents say anything? No. What happened, you ask? 6 people responded. SIX PEOPLE CARED ABOUT THE LOSS OF A LIFE AND
THE ILL EFFECTS OF THIS AWFUL DISEASE.
I’m not just hurt. I am
offended. I am offended that it doesn't
matter to the masses. I am offended for
my husband, who stuck his neck out there and posted something very personal and
only 4 people – 2 of which were my friends even acknowledged his post.
The obvious in all this is that awareness is lacking. I know that I have to continue to raise
awareness. I know I can’t expect others
to empathize with what they don’t understand.
But I also know that some people just can’t be bothered. This makes me sad. This is the sad condition of self-absorbed
attitudes that are so prevalent and so hurtful in our society. How do I make a difference? How do I change it? I don’t know.
But I do know that AWARENESS in any form possible is the key to us
getting the help that we need and deserve.
AWARENESS SAVES LIVES…and it starts with me. Want to know more about my journey? ASK ME!
I’ll tell you more than you ever want to know. Will it be uncomfortable? Probably….but if you care, it won’t
matter.
My mortality? It will
continue to pop up and smack me silly I suppose. The question for me is, can I use my
familiarity with my mortality to make a difference for at least one other
person? HOW can I make a difference for just
one other person?
