Road to Diagnosis – Part 3

Even though I *have* EDS, I don’t know that I actually understand how it progresses, how it becomes worse – how the damage becomes so overwhelming that it starts to steal your life.  As a teenager I did live with daily pain that wasn’t normal.   I didn’t realize how abnormal it was, so I just kept on keeping on.  The pain was nothing like it is now, after years of abusing my body by doing all the things that ‘normals’ do.  Now, by ‘normals’, I DO NOT MEAN THAT EVERYONE WHO DOESN’T HAVE EDS HAS AN EASY TIME, or has even necessarily has their health intact.  I realize a lot of people struggle for a lot of reasons, but for the purpose of my blog I’m going to call people who don’t have EDS ‘normals’.  If it makes you mad, feel free to leave me a message about it.  It doesn’t mean I’ll *do* anything about it, but I know I’m bound to piss someone off at some point!

Because I wanted nothing more than to move out on my own one day, I started working as soon as I could.  I was babysitting summers at 14 and had already secured my first ‘real’ job at Taco Bell a few days before my 16th birthday.  I wanted to work.  I needed to work.  Trying to attend community college without any support from your family requires that you DO work.  I took a job at a telemarketing agency while I was in college to try to make ends meet.  Thanks to my father being disabled, and my mother’s creative tax filing skills I managed to qualify for a Pell Grant to attend school.  Well… I did qualify for a grant, until I started to make more than a couple of dollars a month from work.  When my income got added with my mother’s, I lost my eligibility despite the fact that she was unwilling to contribute a penny to my education.  To emancipate from her at that age would have required legal maneuvers that I was unwilling to undertake (remember, I didn’t know how to say ‘no’ to her yet).   So I had no choice about working, because my mother was charging me rent and I had expenses if I wanted to attend school.  It was a real catch 22 situation.

What I needed was a REAL job, and I found one at a microchip manufacturing plant (which used to be a part of AT&T).  It was a union job, well paid.  I couldn’t afford to stay in college without a job and I didn’t have the energy to go to classes once I started working 12 hour shifts at the factory.  What it did allow was for me to live on my own FINALLY, even if ‘on my own’ meant that I was paying the mortgage on my mother’s house that she no longer wanted to deal with.  She moved on to Kentucky with her wife, and I took over the reins on a 3 bedroom, 2 bath house on the 5th tee of a golf course in Orlando.  It sounds really posh, but old housing developments with golf courses are a dime a dozen in sunny Florida.  The house was run down and needed a lot of attention, but it had enough space for me to bring in roommates to help make ends meet.  This was the beginning of one of the better times in my life.  I was about to turn 21 and here I was working at a great job, living in my ‘own’ house and partying with my crazy roommates on my days off.

This new life had some pain to be sure, but it was manageable.  I finally was finally free to take care of no one but myself and it felt like such a relief!

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One thought on “Road to Diagnosis – Part 3

  1. Hey A,

    I checked back on you a while ago, but no posts. I can relate to this. When I was 21, I transferred to a college outside of Seattle (my hometown) and it was a weird, hippie school and we had class T-Th (8 hrs/day). Then, I’d commute back to Seattle and take care of my much younger brothers until Mon.–although they were already in the streets by then like I had been–due my mother being on a bender every night and my formerly responsible father losing his balls to his 32-yr-old, gold-digger GF (he was near 50). No one believed me either, until my drunk mother backed her SUV out of the driveway and tore off my fender, then tried again and smashed into the telephone pole. I finally got my grandparents to get involved when I drove my previously pristine car to their nearby home. Sorry you had to be the responsible one so young, too. Truly sucks.

    I started working when I was 14, as well (odd–even for a telemarketing company getting unlisted numbers), although my father was financially successful–it was a work-ethic thing he wanted to teach me. Well, it kept me out of the streets part of the time, anyway! Never did fast food, but plenty of $4.25/hr retail mall jobs! OMG! Isn’t weird how despite our degenerating bodies (yes, I think about this all the time), we have survived–it’s why surviving is in my tagline (I think I mention that a lot!). Only thing I know how to do, despite having mostly poor role-models my whole life. Great post, btw! As mentioned, we need more EDS bloggers on here who know their stuff and tell it like it is…

    Hang in there!
    A 🙂

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