A Life Lived Differently

“May I take your order?”  “Hello?”  The car proceeds to the window, not having yet placed an order.  “Two number fours?”  “No, you couldn’t hear me.”  “I’m sorry, you will have to come in to place your order.”  “Actually, no, I don’t have to.  See, my right to use the drive through is protected under the ADA.”  Manager comes over.  “I’m sorry, how can I help you?”

“What’s wrong with you?”  “Wow, you really have a funny sounding voice.”  “You should not be out in public since you are likely contagious.”  “Have you tried hot tea?”  “Do you have TB?”  “Great, thanks for coming and getting everyone else sick with your cough.”

“Wow, so you are the reason healthcare is so costly?”  (This is a real remark.)

Insert imitation/mocking of what I just said by someone making fun of my voice, or lack thereof.

The stares.  The stares as I cough, sneeze or work to dislodge a mucous plug…all from a hole in my neck made over 22 years ago to keep me breathing…alive.

The avoidance of social gatherings…not because I want to be a huge introvert, but because it’s physically and mentally exhausting.  Talking is like working out…talk too much and a large oxygen-deprivation headache comes to visit.  Talk too little and people comment behind your back that you are rude.  Dinner out…conversation with those I am with is often impossible.

Welcome to my reality.  My every single day of life.  Above is just the tiniest of glimpse into what could be a fairly lengthy book of remarks, comments, experiences.  I work so incredibly hard to disguise it all as much as I can….to try to not be different in a country that seems to have to work so hard to accept anyone that is different.

I write this, not for your pity, it’s neither wanted or warranted.  I write this today as almost a real, honest, truthful glance into my life and my brain and where I am.

I recently posted on FB my two cents, worth less than that, opinion on Meryl Streep, DT, and mocking those that are disabled and the bullying of those who are different…and those who maybe don’t agree with our next PEOTUS.  I try, for the most part, to keep my very opinionated views off FB and put them on other social media sources.  I’ll like an article, share an article, etc…but if I put up a status on FB…you have to know it’s because it means that much to me.  It’s that important.  I was caught off guard by how quickly it went partisan.  How can standing up against bullying and mocking the disabled/sick be anything but supported by all of us?  How can someone being bold and taking a stance in a very public forum be anything but applauded for the community being spoke of.  My head and my  heart have just ached.  So, today, I felt led to share my side…my take….maybe if those that know me know what life is like….know why I have chosen the stances on issues that I have…maybe it will bring a different conversation to the table.  One not tied to being right, or politics or even an interpretation of the Bible.

As a child, long before insurance reforms, I rarely had insurance coverage for my RRP and the care it involved.  I was diagnosed at age five, and since that time I have had well over 250 surgeries.  All to keep me alive.  None of them “optional.”  I was always labeled as a “pre-existing” condition.  I think I was around the age of fifteen when I realized what all caregivers, my parents, family, etc… had to do in order to get me in the OR.  The charity organizations that had to be contacted on my behalf.  All because I was not able to be insured.  There were times that was because of job issues in the home, but most often it was due to that “pre-existing” clause.  I’ll never know for sure how it was done, but I had surgeries covered for years by the Shriners Hospital program…turned 18 and they still helped.  I cannot begin to imagine the financial burden my family faced because of my health. (I know over a marriage what our tally is.)  Just gas/food to and from hospitals/clinics, co-pays, deductibles.  It is a rare disease, so only certain facilities are truly able to care for it then…and even now.  I wonder now if my parents were faced with the conversation of “X dollars” upfront before we can treat your daughter.  I know so many that get that conversation now….

Then I married.  Twelve months with no prior treatment of the condition in order for it to be covered…..twelve months.  Then seeing a lifetime max benefit of 1 million dollars.  Do you happen to know what it is like to literally be forced to choose between breathing and having a surgery covered by insurance?  I do. Lee changed jobs a couple of times during pre-ACA days….the twelve month window back open….sometimes able to get COBRA to be covered for that waiting period.  I know what it is like to have to decide between surgery that I have to have to breath and the onslaught of medical bills uncovered by insurance….or to risk not having surgery to prevent financial calamity.  I didn’t ask for this disease. I didn’t do anything to get this disease.  It simply is….and I lived in a nation where healthcare wasn’t guaranteed for anyone, much less those who had conditions requiring repeated, lifetime care.  Then….we gained ACA.  Obamacare, as many like to call it.

For my community, this was a lifeline.  To know we could no longer be denied coverage or forced to choose between surgery or waiting period…to know the lifetime cap was no longer a concern. To  know children, precious children, would have access to medical coverage.  Those who made too much for Medicaid…safe from exclusion.   This has saved lives in my community.  It has saved people from losing their homes.  It has allowed a community to no longer feel punished for something they cannot control.  I know it has issues….any program this large will have issues.  Yet, when I read comments by people that know me on this program and how they can’t wait for it to be repealed….that’s me you are hurting.  That’s exactly how I read your remarks.  That the person you claim to care about is not worth the protection afforded to her in the ACA.  Then, to see the comments by folks saying they want to keep ACA but repeal Obamacare….really?  It’s the same program….I realize it’s more about who enacted it than what the program is for some folks.  So, then I read those comments as the hatred towards  a political figure matters more than that lives impacted by ACA.  How can I not take that personally?  How can I not wonder if we don’t have two versions of the Gospel floating around?  How can anyone who has maybe a family member who has lived through a cancer diagnosis….how can they speak out so forcefully against coverage for our nation?  A promise other nations guarantee their citizens.  Christ commanded us to care for the sick…..commanded.  It wasn’t an optional thing He spoke of.  I’m going to answer for how I cared for the sick…and I have to side with the protections of ACA.  It’s what we have now…and there is no plan on how to make it better.  Just complaints using political partisanship….how can I not take that personally? How can we constantly say “stand with Israel” who has Universal, legally required health care…and not demand the same for our citizens?

So, there’s my stance on ACA.

Now…back to my FB post and the start of this blog post.

I’ve been mocked.  A lot.  I’m not strong for moving past it.  I’m not this huge pillar of faith when faced with the adversity that comes my way.  I’m human.  When I see a man that will lead our nation in just a few days, openly, flagrantly mock a man with a medical condition (A Pulitzer winning journalist.)….I take that personally.  It’s as if he was mocking anyone in our nation that is less than ideal…less than perfect….that’s what the weak, the bully does.  They mock.  They belittle.  They work so hard to make sure those that are the slightest bit different know that the bully feels superior.  I saw that incident as it happened.  (Before my blackout of cable news.)  No matter the success of that journalist, I can assure you on that day…he felt demoralized…belittled….and furious that people laughed with Donald Trump…cheered him on.  That’s the hard part to understand…that those in attendance didn’t become so appalled…so shocked that they left…no…they stayed..they cheered.  They agreed with every single mocking action.  We expect better behavior from our children than we do the next President.  How can that be ok?  How can those who know me defend that?  He mocked me that day.  Every day he hasn’t apologized to that journalist is another day  in America that the disabled..the sick…are less than.  By standing with him on this…you are saying the same…that’s honestly how I take it.  You have said…my political beliefs..my party having power is of greater worth to me than someone I call my friend.  It’s of greater worth to me than standing firmly against the bully’s of the world who choose those actions against my fellow neighbor…the person created in God’s image.  That people that so ferociously defend the lives of the unborn…well…they look the other way when it comes to defending the lives of the living….all because of political power.

I went to the Holocaust Museum in DC recently.  The entire experience brought tears and heartache….but one part….shook me at my core.  As the atrocity began all those years ago, one of the first group targeted was the sick….those with conditions, whether medical or mental.  They were culled and exterminated first.  By gunshot, drownings, whatever means necessary…they were a drain on society and not part of the “Ideal Race.”  I stood there….tears coming down my cheeks…realizing not only that this took place, but that people knew and said nothing…did nothing.  Power…a drug.  A drug that Satan uses, especially against Christians, as the justification tool for a means to an end.  Hitler professed to be a Christian….a perfect race….control…power….those less than the view of ideal exterminated.  I would have been first.  The man Donald mocked would have been first…a Pulitzer winning journalist…

So, well….I suspect this was more than what you bargained for when you started reading this today….but it needed to be said…we need to all realize that our views…that they have real consequences to people we care about….that it’s not as black and white as we want things to be.

I’m not a Hollywood actress…or a prize winning journalist…I’m just me…one voice…but this one voice will stand tall against those who bully, belittle, mock…I’ll stand tall in support of healthcare for all….and I won’t apologize for it.  I take what Christ said seriously….care for the sick, the poor, the elderly, the widows….love one another…always….truth covered with so much love that when judged, I want Christ to tell me that I loved enough…that I stood in the gap for those who were invisible…with no voice…or made to feel less than adequate in a society that demands perfection.

3 thoughts on “A Life Lived Differently

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