The Hardest Places to Live in America???

Tonight, my entry is not about chronic illness, EDS or any of the normal things.  Tonight, I want to talk about home.

I read a news story about some of the most difficult places to live in the United States.  My small corner of Kentucky was on that list.  They considered the median income, the life expectancy and unemployment rates.  So, I'm going to talk about this.  After all, who is a better resource for the truth than someone who has lived here for 37 years, someone who has written many community assessments in grad school about this region?  Many people in other parts of the world do not understand the culture, the lifestyle, here.  They do not understand how Appalachia has been suppressed, deprived and forgotten. 

First, lets talk about the income.  Now, the median income in Jackson county, Kentucky varies, according to the source that you use.  According to the Census Bureau, the median income is about $22,000.  Lets give you something to compare that to.  The median income in New York City is $51,000.  Our average income is low because there are few employment opportunities.  In Jackson county there are a couple of very small industrial settings, and the occasional gas station and restaurant.  Because of the isolation of these mountain towns, industry does not settle here.  If they do settle, there is no competition so they can keep wages at or near minimum wage.  Here you have the cause of low median income AND high unemployment rates.

If the median income is that low, then of course the life expectancy is lower.  The people in this area are not as healthy.  If you are budgeting $22,000 to pay your bills, your mortgage, insurance, medical bills, etc, then how do you afford healthy food and proper medical care? Our utilities are not cheaper, our medical bills are not cheaper and our insurance is actually higher!  Food is not cheaper here.  Some things are even higher because of location.  So, lets say you have a family to feed on an extreme budget.  A bag of oranges is $7 and a bag of chips is $2, a gallon of 1% milk is $3.50 and a gallon of kool aid is just over $1.  Your ultimate priority is to ensure your children have food and drinks.  You don't want them to be hungry.  The fruit and milk would cost just over $10.  The chips and kool aid are just over $3.  What choice will you make?  Buying the unhealthy choice means that you're budget will stretch a little farther to cover a little more food.  A poor parent can't worry about the long term consequences.  They live in the Now.

These same people may have a more difficult time finding ways to exercise.  There are no gyms, no walking tracks, no YMCA.  You find a way to work out at home, usually.  This is more difficult.  Even walking is a difficult option.  Many of us live on single lane country roads.  You may be taking a huge risk walking out those.

Health care....if you can't afford groceries, you probably can't afford doctor's bills.  Many have no insurance.  I don't care what the Affordable Care Act says.  It is not an affordable option for these people.  Many, many times I cared for patients in the hospital who were admitted and readmitted because they had no way to pay for the medications that they needed to remain healthy and functional.

I could write a book about the problems the people of Appalachia face.  It is a difficult place to live.  But, most of us don't know that.  This is home, this is the life that we know.  We are a hardy people.  And, let me tell you, there is plenty that this story doesn't tell you.  It doesn't tell you about the clean fresh air that we have here.  It doesn't tell you about the open fields, the beautiful forests, the lakes and rivers.  It doesn't tell you about families that stick together, friends that sit on front porches or neighbors that check on each other. This story paints the typical portrait of Eastern Kentucky.  I've been a few places and, let me say, no where is like Jackson county.  This is home.  So, maybe, instead of trashing and bashing our area, people could take a little time to understand it.  And, maybe something as big as the New York Times could help find ways to help, to spotlight us and our plight, not stereotype us.

Charity starts at home

I've not posted anything in a month but tonight I'm thinking about something.

Fundraising.

 

That has been on my mind.  I don't know what its like for other people with other chronic diseases ad won't pretend to.  I only know what its like for us, the EDSers, the chiarians.  There is an order to the things that happen to us.  We get sick.  We search for years while doctors tell us we aren't sick, we are fine, we are misdiagnosed.  Finally, we find that one doctor who puts the puzzle together and sets us on the path to more diagnosis.  We learn that we have a collection of rare disorders.  We go through denial, anger, grief, more anger and sometimes, if we are lucky, acceptance.  Then we learn that there is no cure, there are only medicines and surgeries to repair the damage to our bodies.  Next, we begin the hunt for a neurosurgeon that knows what to do to our broken spine, skull, brain and nervous system.  We finally find others like us and connect and learn that there are only a handful of surgeons in the world that know what to do to us.  Going to the right surgeon, one who understands our complications, can mean the difference between life and death.

 

 

So far, so good, right?  We know what we have, we know what we need to repair our bodies and we've found the doctors that know how to save us.  Now for the problem.  These doctors are most often hundreds, if not thousands, of miles away from us.  Seeing them means we need to pay travel expenses, motels and food.  We need specialized tests, sometimes.  Then comes the surgeries.  Often our miracle doctors are not contracted with insurance.  This means that we don't get to roll in for surgery and pay a deductible or a copay.  We usually have to pay deposits in the thousands.  Its worth it to live, right? But, how do you pay so many expenses and deposits if your sick and can't work?

 

This is where fundraising comes in.  This is the biggest obstacle for most of us.  When you've lost so much, your health, your income, your independence, how do you let go of your pride as well?  Its so hard.  We were workers, achievers, go getters.  Now, we are beggars.  This was nearly my breaking point.  I was always proud of my strength, my independence.  For each surgery I have had, though, I've had to ask for and accept help.  It kills a piece of you, eventually.  But, its better than letting the disease kill all of you.  Sometimes a very kind person hosts a fundraiser for you just as someone did for me last year.  Sometimes we fundraise online (see my link in the top right corner).  Sometimes some angels out there leave a check in your mail.  We learn to swallow our useless pride and say thank you to these great people. 

 

How much is too much, though?  I have had three surgeries and  many, many trips to MD to see my surgeon.  I still need another surgery if he will do it.  I still need at least one or two more trips to MD.  I can't drain my friends, though.  I can't work, either.  So now what?  Let this take me or beg some more and deal with my suffering soul later? 

 

This, my friends, is what its like to be us.  We want to live and will ultimately do whatever it takes.   When you give money to charity, think of those who might not live without it.  And think locally if you get the chance.  And know that those like us, those who know what its like to try so hard, will often pay it back or pay it forward.  Just saying....