October
22, 2014
Here’s
the synopsis of a story of a girl: A girl lived as joyously and as fully as she
could in an imperfect world.
A simple
fifteen word sentence with nothing deeply profound within. I admit until
recently, I was vain enough to expect my life to consist of a vast amount of
profound world altering achievements. I don’t really know how I was going to
change the world; it’s not like I thought I personally would find the cure to
cancer, solve world hunger, or even create world peace. However, I felt like a
failure because I wasn’t changing the world. I felt like a failure because not
only was I not changing the world, I was utterly failing at being anywhere near
to a normal independent and successful twenty-eight year old adult. To me, my life
held nothing profound. While my parents, and I’m sure many of you will argue,
that the profundity of my life is not nothing, what matters is that to me my life
was not what I believed my life should be.
My life’s
summary had to change, and I had to change it because only I can determine how
I see my life. I now have no expectations of being a person whose name will end
up in the annals of history, my story will not be heralded around the world,
and my life will not and should not serve as an example to others. Like every
human on this planet, I only want to be able to function day in and day out, to
contribute positively to the world, to love my family and friends, and to accomplish
those few dreams I can. I simply want quality of life.
Usually,
how you would rank your quality of life is not something you think about unless
you feel your quality of life is lacking in some way. As I stated in last
year’s letter, my health and breathing have been gradually declining over the
past year and a half, and three weeks ago we learned why. I have a new disease
call Bronchiolitis Obliterans (BO). You can’t imagine the fun I am having with
telling people I have BO. Those people then think all I need is a good shower
to cure my new disease. Unfortunately, BO can’t be cured with a shower, and BO
is not a good thing. As the name states, it literally obliterates or destroys
the bronchioles, the smallest part of the lung. If you’re a technical person,
as I assume many of you are, I suggest you Google it to get a better
description.
What does this mean in the long term? Well, we
don’t really know. As per usual, my body has decided to do something abnormal
and rare, and after seventeen years of abnormal and rare, I think it’s better
if we really don’t try to give this new diagnosis parameters. I will admit
though that I am thinking of petitioning the Guinness Book of World Records for
the title of “Person Living with the Most Rare Diseases.” The long and short of
this newest health crisis is that I have a lung disease that has destroyed a
significant part of my already small amount of functioning lung. My quality of
life declined over the past year to a point where I could no longer function
and complete the daily and basic needs of a person. I didn’t realize how bad
my health had become until I started taking one of the medications that treats
BO, steroids. Literally, I went from being a couch potato to being a cyclone of
energy that cooks, cleans, bakes, walks, works, and accomplishes a very long
to-do list. I sleep a mere seven hours and feel refreshed rather than
unrefreshing twelve hours. It’s been amazing. Like I said before though, BO
isn’t a good thing because BO is not curable.
Unfortunately,
it can present a serious threat to life, but there are medications out there
that can help stop and/or slow down its progression. Only time will tell. I am currently
in week three of a four to six week course of IV steroids. I personally feel
like I am more stable, able to breathe, and to actually live again.
Which
brings me back to that synopsis. That is what I want my life to be. My world,
our world, is imperfect. We can’t change that. We can’t make life a fairy tale
where nothing bad happens and where everyone always lives happily ever
after. I can’t change the fact that my
health quite frankly sucks. It does, and at twenty-eight, I think I have the
right to call it like it is. However, I don’t want to live my life as the
biggest downer on Earth. What a waste. What a waste to live your life filled
with negativity and a “Woe is me” attitude. Now that really would suck. I want
to live joyously, humbled, and filled with love. I want my friends and family
not to pity me because I now have more health challenges. That just happens to
be my lot in life, and by now, you should understand I am a survivor.
Many
people have been wondering how I am dealing with this newest health crisis, and
I have to be honest with how I am dealing with it. I am truly at peace with
this newest challenge because I have Faith. I believe in God. I believe in
Heaven, and that my struggles in this world will be erased in whatever comes
next. I have Hope. I hold strong to beliefs that were there seventeen years ago
and remain even today.
I also
have the greatest crack team of doctors, nurses, and staff taking care of me. They
look out for my wants and needs, my version of a quality of life. I have an
amazing support network that includes you.
People who day in and day out give me the greatest friendship and love. People
who make me laugh and are willing to joke even about the seriousness of life.
Being
diagnosed with BO doesn’t change much in my life. I’ve lived with its effects
for a year now. Now, I merely know what has been going on inside my lungs for a
while, and now, I have the opportunity to gain back some of the quality of life
I lost in the past year. I am grateful for whatever health I can regain. Today,
I can accomplish things that I love doing like laundry, going to work for my
cousin at his new electrical business, singing off-key in the car, playing with
my nephews, baking, pumpkin hunting, and driving in the mountains. It makes me
realize I have dreams I really want to accomplish especially traveling.
My Glad
to Be Alive Day isn’t meant to be an example of how to live one’s life. It’s
not meant to be a form of the “Pain Olympics” whereby I say my pain is worse
than yours. I’m merely hoping to share my deepest thoughts with you, dear
friend. That you may understand my life better. That I can tell you, on this my
17th Glad to Be Alive Day, I am still most assuredly still alive and
kicking. Above all, I want you to not feel sad for me because, in my case, I am
so lucky that I already had the greatest bonus of an extra seventeen years and
counting added to my life.
We don’t
know what is coming next. I’m not sure I want to know. But, I do know that I
will strive to make my life as close to that simple fifteen word summary. I
will live joyously and fully because above all that is what I believe in. A
life filled with love, laughter, hope, faith, friends, and family. Those are
things that embody my Glad to Be Alive Day, and they are profound and life
changing if we take the time to appreciate them.
So on
this very happy 17th Glad to Be Alive Day, celebrate all the love,
laughter, hope, faith, friends, family, and simple joys in your own life. Wishing
you, as always, a most unquestionably Happy
Glad to Be Alive Day!
