Why do we take it?

I often get asked, "Why do you let them get away with it?" or "It's only right that you should be collecting social security benefits, why aren't you?".   I am dumbfounded..   The most obvious answer that comes to mind is,  "I'm too sick to fight it" or "believe it or not, my disease doesn't exist!".  I don't know why getting a disease from an insect bite should be so controversial.  So why is it?  Simple.  Money, Greed,  Accountability,  And fear.  It is nothing short of criminal that scientists, doctors, insurance companies and even the legal system stifle our voices for justice.  I just picked the wrong disease is what I am told.  A rich persons disease; a disease where doctors are punished for diagnosing and treating so only the wealthy have a shot at beating it.  More infuriating is when I am told countless stories of healthy people collecting a SS check each month, for things like depression, knowing all the while they are spending the majority of their days on the golf course.  Hell, I'm lucky if I am able to leave my bedroom.  On a good day, I can shower and make it to a medical appointment! Wow...how fun!  Oh how I miss just having fun!  I just want one thing, one lousy little thing to look forward to. Or..something to laugh about.  I haven't had much to laugh about in quite a while.

I'm not sure if it is maddens me more or gives me comfort to know I am far from alone.  Tens of thousands with Lyme and other tick borne illness share my pain...share my anger.  We are all refused benefits,  medical coverage and any financial assistance that may ultimately allow us to survive while trying to fight for and reclaim our lives.  Social Security is something we all have paid into; I know I have put my fair share in.  At the time I became disabled, I was earning a six figure income and was also covered under a private disability policy through my employer.  That policy alone should be paying me 60% of my pay until age 65.

I have lost both my SS and private disability cases.  Despite countless doctors attesting to my need to be placed on permanent disability.  The evidence gathered through countless tests including neurocognitive and performance testing were all disregarded.

So, after exhausting all of my savings, my family's and friends' generosity, and selling all my possessions of any worth, I was flat broke.  Our life of adventure, exciting vacations, beautiful homes and all the creature comforts was replaced quickly by low income medical clinics, welfare, food stamps and a fear unlike anything we had ever known.

I went homeless with my son when he was still in High School.  It makes me sick to my stomach to even say it.  That one day when we drove to the park, pets in tow, with absolutely no idea of where we were sleeping that night I know will haunt me forever.  I am scared that is what he will remember when I am gone.  Let's face it, how much do we remember before middle school?  He was only 13 when I got so sick I could no longer care for him.  His senior year, we bounced from friends couches, hotels that were donated to us and finally, after finding him a room near his school until graduation, I had to leave him alone and  stay 90 minutes away.  I don't know if I can say that was the worse part of this; it was all bad.  And it just kept getting worse.

I kept thinking,  something has to change.  It isn't right.  I'm a good person.  I did everything right so this could never happen.  I'm a college educated professional and I'm covered for things like this.  Something has to turn around.  I prayed to God constantly for a miracle.  But it never came.  Things just got worse.

My son did get to graduate but had no time to celebrate; the following morning we were on a plane bound for my childhood home where, although not ideal, offered us shelter.  I had been sleeping on couches for so long I didn't care there wouldn't be a bedroom for me.  What killed me was that my son was losing out on what should have been the best summer of his life.  He knew not a soul for 3,000 miles and spent the entire summer inside.  He wanted so badly to work but after an exhaustive job search, finally accepted the current economy would not provide one.  In a small town like this, it's all who you know anyhow.  I hadn't lived here in many years so it was a stranger to me; and though he never once complained, I know he despised it and our current situation.  Afterall, he was born on Maui and raised between Hawaii and sunny California; a small town on the east coast was no match.  There was nowhere for him to go, no way for him to meet kids his own age.  Neither of us could drive because I couldn't afford the insurance on our car.  So, he sat inside for eight long weeks and my heart ached for him.

I recall my summer directly before college.  It was one of the best of my life.  I could not forgive myself for not giving him that.  This was our last hurrah; not only did I cry for him but I too felt cheated.  It's hard enough to see your kids go off to college, but to lose him in high school, then for the two of us to be in such miserable state during our last summer together.  I had always dreamed of this summer; a trip to Europe as our last vacation together before he left home.  But now, we had no home. And I was much too sick, and too broke to even go to a movie.  I'm sure he was silently counting the days until he would leave me and start his own life back out west.  When he left for school there was nobody to accompany him, help him move and get settled.  I remember how scared I was when I went off to school.  I could have never done it if my Dad hadn't flown out with me; I was terrified.  My heart sank as I watched him walk out of sight at the airport.

Lyme Disease steals so much, so much more than just one's health.  My dignity, self-respect, my ability to provide for my son were all taken as well.  I was at the height of my career; a recognition of twenty years hard dues paid and finally the job of my life, poof, gone in an instant all from the bite of a tick the size of the period at the end of this sentence.  And my son, he lost so much too...he lost his mom.  Something that small took everything from us, and it is relentless...it still keeps taking.