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Some hard truths.


Where to start? By now, I’m usually just reiterating all of the lineups, prizes and dates, but I haven’t been posting anywhere near as often as past years.  What gives?

Honestly?

This is hard for me to admit to myself, let alone type and share with whomever out there wants to read it.  While I have been working mainly for myself, I’ve essentially stitched together a grand total of 4.5 jobs, just to keep some sort of steady income.  This has meant I’ve had less time for things like Crash Safely, but also things like taking care of my never-simple medical issues.

I’ll tell you when you ask that I’m well, because I’m better than I have been, but the reality is that I am scared.

A contract position I currently have that ends in January may jeopardize my ability to afford health insurance. I’ve already been threatened with termination for income amounts.  None of the other 3.5 positions are able to offer me a stable, full-time, benefits-eligible versions of the positions I currently have within their organziations.

Contact positions I’ve held in the past year that were “temp-to-perm” became terminated once the dreaded discussion regarding my MS treatment goes from “talk” to something supervisors actually have to deal with and schedule around.  It’s always “fine” in theory, but in practice becomes an “issue” that no one seems to want to deal with.  Best just to get rid of the person who could potentially raise everyone’s premiums by simply accepting that full-time offer, right?

This has been my reality for the past year or so. The safety nets that are available are very slim and I often make “too much” to qualify for assistance, or am “not disabled enough.”

The person who can’t sleep and can’t feel a good third of their body on a good day isn’t disabled enough.

The person who exhausted their unemployment makes too much money.

I have no family that can assist me. I have no safety net; when I fall, no one will catch me. I know this because I have been in positions in the past where I had no money and nowhere to live.  Thankfully, I had access to places on my college campus that allowed me a method of survival. (Living in a radio station office is, by the way, not very comfortable.)

 

I put on a brave face every day, especially at that contract job.  It’s not my co-workers’ fault that I’m in this situation, and they don’t need to be burdened with this.

The very real possibility of being told that I make too much money for my current premiums could mean an end to the MS treatment that has kept me stable for years.

“Stable.”

I lost my ID for that contract job yesterday and I don’t know how or where.

Unless you have a unique name, chances are very good that I will forget it if we meet, even if we have many great conversations.  I may also not recognize you if I haven’t seen you in a while and we are acquaintances, not close friends.

I can no longer sleep unassisted.

But I can walk.  I can write.  I can type.  I can use a fork and a knife.  These were all things I couldn’t do in 2009.

When the humidity rises (which happens in the winter and the summer), I am reminded of these things. It’s harder for me to walk and use my hands.  It’s harder for me to think.

I have to play endless phone tag with durable medical equipment suppliers, health insurance companies, hospitals, doctor’s offices, pharmacies and others. It’s tiring and hard to keep them all straight.  None seem to have after 5pm hours, and I do not have any privacy to take these calls while at that contract position. As a result, I take these calls outside- literally.  I’m standing on the corner on Mass Ave, on hold, hoping to resolve yet another problem, hoping the hold music isn’t eating away at my allotted “anytime” minutes on my cell and that the alcoholic on the corner, toasting me with his nip bottles, doesn’t take my appearance outside as a sign we were meant to be together.  Again.

Back inside, regardless of the outcome of the call(s)- big smile.  Don’t ask, don’t tell.  Nothing to see here.  See you tomorrow.

Repeat.

Maybe I should say I work 5.5 jobs.  It’s full time work, sorting all of this out.