I Won’t Be Back.

When I started my ECT treatments, I was prepared to document my journey.  I wanted others to see that it wasn’t barbaric, so that they too could have a chance at putting a lid on their depression, at least for a little while.  I thought I would get a dozen treatments or so, and I’d be done.  All better.  That didn’t quite happen.  Oh, I am better, much better than I was, but my new normal is nothing like what I expected it to be.  ECT wasn’t bad or good but a little of both, and the aftereffects are even more mixed.

First of all, those 12 treatments turned into 3 months of constant travel to a city six hours away, at times all the way there and back in two days, other times with a week in a hotel room.  They gave us a hospital rate, but that hotel wasn’t free.  We never unpacked our suitcases.  We hardly bought groceries.  Our kids got really sick of staying with grandparents.  My husband and I both missed work, since I had to have someone with me for the treatments. I was long past any sick or vacation leave, so I got no pay.  He got pay, but I worried they would fire him.

They didn’t.  Thank goodness.  No, they fired me.  Or as the university likes to call it, they “terminated” me.

They aren’t specific with that terminology.  Anyone who leaves the university is “terminated.”  After student workers quit, my coworker would say “Madison has been terrrrrrminated.” in a threatening voice.  And these were people who chose to leave.  In fact, I do not recall in my seven years at that workplace anyone ever being fired no matter the gross misconduct.  Just me.

Technically I was terrrrminated for, as the letter called it, “excessive absenteeism.”  Oh, yeah, it was a letter.  No in person meeting.  No phone call.  No warning.  After getting two degrees from that place.  After working two different jobs at that place.  After struggling just to get up in the morning for so many years, after keeping a job when anyone sane would have quit to rest, after using all my energy for said job with hardly any left to spare, after spending so much time worrying about that job that I couldn’t let myself heal, I opened my mailbox to find a letter.

I’ll simplify what it said.  “Hello Alice. I realize that after seven years of a family work atmosphere with people you called “friends”, you thought maybe you might survive your latest bout of illness.  But this time you went over your FMLA, that stuff that the government amazingly still offers that lets you have twelve weeks of unpaid time off for pesky things like illness.  It’s almost like we were just waiting for you to go over that block of time, and throwing down the hatchet right when you did it.  Sure we could have warned you, or heck, called you even ONCE while you were out on leave to check on you, but that would acknowledge you had a real illness, not to mention take time from our schedules. Nevermind that your brain has been shocked into seizure over twenty times, you really shouldn’t have abandoned your job.  But you did, so give us your keys and your ID card, and clean out your desk.”

I have been through many emotions after losing my job on August 24, well technically the 22nd, as it took two days for the letter to arrive.  (For two days I was fired, and didn’t even know it!)  Yet the first thing I felt when I read that I no longer worked at that place was relief.  For the first time in a very long time I could breathe.  When you have a chronic illness, it becomes another job.  Add in parent, spouse, maid, cook, etc – each one a job in itself.  No one can do that much, so you start dropping jobs.  I stopped cooking.  I stopped cleaning.  Self-care also fell by the wayside.  Depression isn’t big on letting you shower anyway, and add in a severe time crunch, and you can forget it.  And this was all before I decided to try ECT as a last ditch effort to help me cope with a disease that has plagued me sense I was a teenager.

Yet the relief was short-lived as I now face a very uncertain financial future.  I had wanted to quit, but I felt like I could not.  We needed the money, especially after months of no pay AND high medical bills that had gathered up on my kitchen counter.  We needed the very good insurance to pay for all my medical woes.  I spend thousands each year just for daily medications I get from the pharmacy.  My mother pointed out that this might be a reason for them wanting me out of there.  Insurance companies aren’t happy when they actually have to pay back some of those premiums.

I feel guilt because of the financial losses my family has taken due to my illness.  It isn’t my fault, but that really doesn’t make me feel better.  I am far from the only one.  It’s all over this supposedly great country: families who work hard but live on the brink, one medical disaster away from total bankruptcy.  I know so many this has affected.  A hairdresser and family friend who was denied insurance because getting Colon Cancer was a “pre-existing condition”.  She’d already had Breast Cancer, no fairsies getting it again. I have a friend deep in debt for trying to keep her chronically ill kids alive.  I have a friend with Fibromyalgia and Depression.  She had to quit her job because constant debilitating pain forced her to do so, pain many doctors don’t even believe is real.  A blogger friend just sold her house to help with her massive medical debt.  As she said, all because she got sick.

My brother has struggled with Type 1 Diabetes and Bi-Polar disorder since he was a child.  My parents have struggled with being his caretakers.  Bipolar disorder and Diabetes are a double whammy.  Not wanting to take care of yourself is one thing when you don’t need insulin and a healthy diet to survive.  He has already lost part of a toe.  Yet my parents spend money they worked hard for all their lives to help him survive, because he cannot stay in a job.

I was supposed to be the Golden Child.  In spite of 3 degrees, I have failed.  Over and over.  I was forced to resign from one job, and forced to quit another due to intolerable working conditions.  And these were just my “professional” jobs.  Those jobs, and the latest one, were all at libraries.  Maybe I shouldn’t like to read so much.

I am lucky, because I have had the help and support of so many people.  There is no safety net here for most people. They stop or ignore needed medical treatment every day because they can’t afford it.  They can’t afford tests that could not only make their treatment less expensive in the long run, but save their lives.  It’s all about money here.  God forbid anyone raise taxes.

Let them eat cake.

We need a change.  Maybe we don’t have the power to stop these diseases ourselves, but we have power to lessen willful ignorance.  We have the power to decrease selfishness and cruelty.  Do not doubt your ability to help someone feel better with a simple word, a kindness, an embrace, or a novel length blog post.

And don’t forget to vote.  Vote for those who would choose kindness and mercy over greed.  Who would help people who are too sick to help themselves.  Who would pass laws enforcing humanity in workplaces, in insurance companies, in hospitals.  Who would let sick people think only of getting well.  If we don’t find those candidates, we can create them.  Surely the “greatest nation” could do something as simple as take care of its own.

~ Alice