I used to jokingly say “I need a lung transplant” anytime I
got a nasty cold. The hacking fits that would double you over, you’ve been
there yourself. Well tonight as I am sitting here feeling like crud and hacking
up a lung, I say that no more. Isn’t it
interesting how something so benign and trivial said in jest totally takes a
drastic turn to not so funny when faced with the real possibility? I dodged the
bullet back in December (and “dodged the bullet” certainly wouldn’t be funny in
someone else’s circumstances) and it left an impact. I no longer joke about my
lungs. It’s too close to home.
Interesting how we can go from being carefree/comical
in tossing around colloquialisms about certain scenarios, and then drastically
in 24 hours time with one brush of fear we can transition over instead to an
advocate. “I need a lung transplant”, “He
rides the short bus”, “ we certainly dogged that bullet”, “it made me want to blow my brains
out”, “I’d rather jump off a bridge”. Carefree, right?... until you have to
face one of them for real. You would
never use these latter words so carelessly with someone who lost a daughter to
suicide. Words carry a different meaning once you've been there.
And take the advocate into play. Isn’t there always a story
there? Who actually advocates for something they know nothing about? Chances
are, I mean super high chances, if someone is speaking out for or against
something, they’ve had a brush with it themselves. I have a friend who is highly visible in the
world of human trafficking. She’s had a brush with it herself. I work with
parents who devote their lives to raising awareness for genetic diseases. They
lost a child to its horrible grasp. I have another friend who lost a spouse in battle.
They now serve on a foundation for helping widows of war. Think about the
things you are passionate about. Are they not fueled by experience? We want
women to be more open about infertility and miscarriage. If you advocate for
that, I bet you’ve been there. I
advocate for women in mastectomy. Yep, I’ve been there. It’s so easy to care
about issues we have traversed, either first hand or second hand), and in
contrast it’s simply so hard to have lasting care for things we have not. Experience
carries forward a motivation and a little tug at the heart strings. However, it’s
very difficult to maintain a stance on something we know very little about. For
example, it’s easy for me to feel care and concern for your battle with heart
failure while you are there in the moment digging your way through the trenches,
but that care and concern rarely morphs into a passion as we move further away
from your event. A month or two later and I’m back to feeling something less than
advocacy for your struggle. My concern
for your experience over time is replaced by the urging demands of my own life.
This is why there is often loneliness in our plight after initial diagnosis. It’s
just a reality of doing life with other people. By design, we simply care a
whole lot about other people as they face the giant, but as the giant becomes
familiar and yesterday’s news, the giant takes a back seat for the rest of us
as we watch from the side lines. But give me a personal scare with pulmonary
fibrosis and I quickly become an expert in everything fibrosis and that
expertise will last for years to come.
I think God was brilliant in this design. We can’t all be
advocates for everything. The pool would be watered down. Unbelievable.
Un-motivating. If we all ganged up on raising awareness of absolutely everything,
we would put less than 1% of our efforts and wisdom into each issue. Instead, don’t
we become more relate-able, believable, trustworthy, impacting by advocating for
issues having been there ourselves? For example, I truly do not think you want
me to advocate for women on divorce. I simply know very little about it. I’ve never been divorced, no one in my family
had been divorced, I have very few friends that have been divorced. My knowledge
is third hand, from books, from movies, from conversations. So what merit do I
bring to the divorce table? In fact, instead of merit, if we all are going to
be honest here, I more likely bring a little bit of judgement to that table. I
am happy to support you, cry with you, pray for reconciliation with you, but I
seriously doubt I would have any impact as the advocacy-face of women going
through divorce, and because I haven’t been there myself, I risk coming to the table
full of preconceived ideas and judgement that simply doesn’t pan out. And as
someone looking for someone to advocate on my behalf for any topic I’m facing
do I not want someone who truly knows ( not from books but from experience) my stance?
I want to tell my deepest struggles to someone who has been there, someone who
gets it and brings no judgement to the table, someone who I believe truly knows
what I am fighting through and for. We are creatures of relationship, and we
naturally navigate toward what we know, and we also want to be known by other
people who have been there too. Our advocacy is a testament of our experiences.
And 24 hours, 6 months, 1 year from now,
we have no idea what we might find ourselves suddenly an advocate for.
Full transparency? I used to get really frustrated with the
Susan G. Komen platform. There, I said it, it’s out there on paper. If I had to
guess, breast cancer (BC) gets the most research, financial backing, commercial
propaganda, of anything else out there in the malignancy world (maybe even of
any disease state). Make something pink and sell it in October and it will be
bought. It wasn’t that I didn’t think BC was a worthy cause, it most certainly was,
but working in oncology and seeing all the malignancies not advocated for…well,
it frustrated me. Take pancreatic cancer
where the 5 year survival rate is a miserable 8%. Where is a month devoted to
it (it does exist but I bet most of us don’t know when it is)? Where are all the
football uniforms colored purple during pancreatic awareness month? I simply
wanted the attention/finances/research to be spread evenly across the causes. Breast cancer is worthy, but it totally
overshadows other killers out there. Then….I got my mastectomy news. I can’t
say my position on everything has changed, but it changed enough because now I
wasn’t an onlooker looking in from outside but rather a women staring statistics in the face. We simply care about what we have experienced,
and that can change at a moment’s notice. I now realize it isn’t the Susan G. Komen
Foundation that is at fault for the imbalance, she totally did her part to get
the news out there and sets the bar very high. It’s the under representation of
advocates for other areas of life. Liver
cancer awareness exists, but it’s not so in your face. Same with depression, Alzheimer’s,
Krabbe disease. ALS got a huge publicity projection with the recent Ice Bucket Challenges. It all came down to someone fighting the fight and then someone picking
up the reigns and being creative in their advocacy.
I need that creativity. I need that passion. I need to shout
out for the scars of mastectomy and so many other things in life. I need to be empowered to fight for what I
experience. I would have never even considered giving pulmonary fibrosis a
single funding dollar before last December. I would have given breast cancer
some funding because it’s so highly visible thanks to advocates that are hard core.
So I ask myself, what should I be advocating for that I am not? What is going
to happen in the next year of your life or my life that will suddenly change my
awareness? What has already happened in your life that you now need to be a
voice for? We won’t have the same passions. We aren’t designed to do so. We
should all be passionate about some things at baseline (injustice, persecution,
abuse, neglect, etc) and then we should individually become advocates for other things
because God allowed events in our lives to change us, or change someone around
us (malignancy, abuse, infertility, oh how the list goes on and on and on). In the
former we carry commonality (it’s a mandate of being a moral and ethical
humanity). The latter we sort of find ourselves in after we experience life
unfolding. We very simply need to be an advocate…for something. Otherwise, what’s
the point? Does it not instead become an experience and then an opportunity
lost? Do I not owe the next victim my
voice and experience? I certainly can’t save the world from everything, but I
certainly can use my individual experiences to do my best trying, in whatever
way I can no matter how big or how small. I’d say I get a failing grade on this
most days, but I’m hoping to one day be Most Improved.
Thank you, cleft lip, lymphoma, mastectomy, fibrosis, personal
failure, insecurity, and everything else that is still to be determined. I hope
to not let you down.
(As an update on my friend from my last post, her cancer has returned. Hers is not my story to tell, but I do ask that you pray for her as she navigates this again. We have been talking behind the scenes over the last 10 days and what a motivation her story is and will be to those she tells. God does great things, even in pain.)
To access previous blog posts - click HERE.
(As an update on my friend from my last post, her cancer has returned. Hers is not my story to tell, but I do ask that you pray for her as she navigates this again. We have been talking behind the scenes over the last 10 days and what a motivation her story is and will be to those she tells. God does great things, even in pain.)
To access previous blog posts - click HERE.
