Thursday, October 6, 2011

My Double-Edged Spoons

I just a read a blog on Wellsphere about the spoon theory (a chronically ill woman’s now-famous description to a friend about living with limited reserves).  A rush of memories came back related to my own sharing of the spoon theory and some crazy twists and turns that followed in my story that probably differ from what most people experience when they share it.

After I was diagnosed with CFS, a childhood friend with MS told me to "watch my spoons".  It took me a while to finally ask her what that meant.  After reading it for the first time, I referenced it often to help describe to people what I was going through.

The only down side was sharing it at work.

 I sent it to a few colleagues and supervisors I had mentioned it to, just as a means of updating them and sharing.  It apparently made one of the supervisors very nervous.  He emailed me in response (just before Christmas 2010) that "things weren't working out" and that after Christmas I needed to come in for a meeting.  The union came with me to the meeting, as I had never had any problems or performance issues as a long time government employee.  In fact, my experiences with the agency had been pretty amazing and fortunate. 

By the time of the meeting at the end of January 2011, I had worked my way up to more than 30 hours a week of work time and was recovering well, so it was crazy to hear at that point that things weren’t working out.  Especially after multiple months of support through Bell's palsy and then my Chronic Fatigue diagnosis.  Another supervisor, who had not worked with me or seen me  in months, told me at the meeting, following my report of improving health that I ‘had not shown any signs of improvement and would not be improving in the foreseeable future’  or something to that effect.

It was a very distressing statement to hear just after sharing a lengthy amount of detail about my progress.  I was a month into a treatment that was really helping me.  My doctor expected me to be back to full time by summer.  But the meeting, and then my life, went significantly downhill from there. 

Too many traumatic statements were made that day and too many unbelievable events have occurred since to recount them here (and in general I try to keep this issue in a different blog).  The union was appalled and helped me try everything over the following several months to save my job, since there are a fair number of laws and policies in place that should have offered protection.  By spring we were exhausted from trying and it was time to hire a lawyer. 

The EEO discrimination process was not fast enough to help me in time to save my health or my job, and the constant badgering and letters and demands from management completely reversed my recovery and put me back in bed for months.  Ironically, by the time I had a chance to document my health situation, they had essentially made me as sick as they had claimed I was the previous winter.  That will sound dramatic to the world at large, but I doubt it will to CFS patients and care givers.  It is not dramatic in the slightest in light of what I have been through.  This post is in many ways far too reserved to do justice to my situation.

My workplace was not perfect, but I love(d) my job (half wildlife biologist, half writer editor) and there is no other like it.  People in my workplace don’t typically speak to one another the way I was spoken to on the day of the “spoon meeting” and I have not ever heard of an employee receiving the kind of treatment from my agency that I received from then forward, though I’m sure it is nowhere near as rare as one would hope.  These were people I respected and trusted and I haven’t been able to comprehend still where it all came from.  One of the last statements at that fateful meeting was that they had had faith in me and that they were the ones who had created my job for me.  I don’t know when or if I will stop wondering when and why their faith in me ended, or where the new sneer in some of their voices had come from.  My colleagues still respect me and they will remain life-long friends.  And I work(ed) with with a lot of amazing people whose respect means a lot to me.

An irony for me that comes to mind is that the manager that emailed me in response to the spoon theory that ‘things weren’t working out’ noted that his email would probably cause me worry over Christmas, but to take care of myself and “watch my spoons”.

I have learned that trying to answer the unanswerable questions this dispute has left me with takes too many spoons.  By last spring, it took so many spoons to defend myself through all of those months while trying to protect even my most minimal rights that I was robbed of my work spoons and my family life spoons and even my basic functioning spoons. 

I had to protect my spoons from then forward.  I made myself unavailable during sick leave so I could recover rather than answering letter after letter and email after email.  I’ve been waiting almost a year for a formal final answer to my requests for reasonable accommodations, so I have not been able to work or get paid for a long time.  But traveling (cheaply) and being with my kids and staying removed from the fruitless battles helped me build up my spoons and learn to better protect them.

I am still waiting for the EEO process to move forward.  Waiting for it takes spoons, and the reasonable accommodations process separately continues to cost far too many spoons without yet providing any benefit or any options for returning to work.  I loved my job, but I am hoping for the final answer for reasonable accomodations to just come, even though it has already been essentially spelled out that it will be removal from my job.  I have taken every reasonable step multiple times, so it is no longer an appropriate use of spoons. 

I have a family and these are our spoons.  They belong especially to my kids and it is time to give them back.

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