Tight Rope

I did not go to Mayo that Friday because it was logistically impossible.  My mom (aka travel agent) was able to get us flights out the following week.  We bought open ended tickets this time since we had no idea when the return date would be. (that’s where medical travel can get REALLY expensive, when you are cancelling, changing, or booking flights at the last minute. If any of you travel for medical reasons I recommend Delta.  They have a specific department for this, you can buy open ended tickets, change flights without fees, and cancel tickets without losing all the money you sank into buying them.)

tightrope

I also needed time to approach my boss about the fact that I had just missed 10 days of work and that I would now probably miss 10 more.

When I had returned to work the first time let’s just say there was definitely no tinker tape parade.  Most people had not even noticed I was gone.  A  woman who works in the Dean’s office actually had the audacity to comment upon my return, “Well there she is, you don’t look like you just had surgery, you sure you just didn’t say that and then go on vacation for a few days since you didn’t have any time saved up?”  I acted like I didn’t hear her as I breezed through the office.
The morning I got back I had to have a meeting with the administrator of the Dean’s office of my college.  Even though my boss was my boss and I answered mainly to him, at universities you also answer to three or four other bosses who have control over other aspects of your employment.  Their authority and duties overlap which makes the question of “Who’s really in charge here?” a difficult one to answer.
Luckily, I had slipped by Tamika in HR and been granted special leave on the appeal that my boss had filed on my behalf while I was away.  I was so thankful for that but now I had to sit through a meeting where I was informed that I would not be paid for the time that I had missed, I would be stripped of any and all sick time that I had accrued since I had been employed, my probationary period would now be extended an extra ten days for the ones that I had missed, and I needed to understand that this was a very rare privilege that would NOT be granted to me ever again.  The tone of the meeting was stern.  I left feeling like a golden retriever who had just been swatted on the nose with a newspaper.  I did not come back to people congratulating me on surviving or saying “oh thank God you’re ok, we were all so worried.”  Instead I was getting a slap on the wrist and a “you got away with it this time.”
And it made me mad. Not stomp your foot maybe use an expletive or two mad, but jaw clenched, shaking with rage, shove a toddler off his bike mad.
I sat in that office with my back straight, my shoulders square, both hands resting on the armrests of the generic chairs that are in every office of the university, and I did what countless years of being a woman has taught me to do when faced with a ludicrous situation over which I have no control:
I was charming.
I apologized for the inconvenience I had caused everyone, cracked a joke at my own expense about my boss needing to check my warranty before hiring me, I gave the administrator a “c’est la vie” shrug of the shoulders when she talked about docking my pay, and a congenial laugh and a shake of the head when she said I would “NOT” be afforded this privilege again.  I assured them, “Believe me, I would rather walk across hot coals than to ask for this privilege again.”  hahahaha we all chuckled. Of course I would not be asking for this privilege again.  What a ridiculous idea.
 It was a good thing I was gripping the armrests of the chair and that no one had been polite enough to offer me refreshment.  If I had been holding a glass of water during that ordeal I am sure that I would have gripped it so tight it would have shattered in my hands.  I knew I was lucky to still have my job but I left that meeting feeling nothing but rage.  What had happened to people’s compassion? (I had not yet learned the big difference between sympathy and empathy.  It was an important but painful lesson that I would learn.  One I am glad that I understand now as I move forward with my life.)
As I suspected when I broke the news to my boss he looked distressed.  “I’m not sure how I can save your job Stephanie.  You may need to step down.  Resign for health reasons.  Then when your position becomes open again hopefully you will have all this under control and you can reapply.”  I remember how much this statement hurt me.  My boss was giving up on me.  Even the phrase of the sentence implied that this was my fault.  I needed to step down and could come back when I had everything under control. The problem with vascular tumors of unknown etiology that grow aggressively at your skull base and wear away the bone is that you don’t have a lot control over them.  I was just along for the ride like everyone else.  All I could do was literally hang on for dear life and hope this roller coaster ended soon. (But Cheryl Barth I sit in the front row of this roller coaster not the third ;))
We discussed the situation for a little longer and I left his office feeling lower than I ever had.  My boss is a good person, he really is, but this was not happening to him, it was merely affecting him.  He had done his best, tried to help me out, but at the end of the work day he needed someone who could be at the office doing her job.  My health problems were merely an inconvenience for him.
He could sympathize with my situation but he couldn’t empathize.
 So I went back to scouring that 275 page policy manual.  After reading it I learned that if I stepped down from my post I would be ineligible for unemployment insurance.  I would have zero income until I could get well and find another job.  As far as insurance, I could continue on Cobra for awhile but the premium went up 16 times higher since I had to pay the full amount.  And what if this tumor kept coming back? After I was no longer eligible for Cobra could I even find an insurance plan that would take me on? How could I afford my hospital bills without insurance?  What would I do when the money ran out? At 28 I found myself consulting with a friend who was a financial planner discussing liquidation of assets and what it would mean for me to declare bankruptcy if it came to that.
I work at a Center that does research on government programs that assist the poor (among other subject areas).  We use the term “safety net” to refer to them and a big topic of discussion in our office is economic shocks and how these affect people and make them more at risk of slipping below the poverty line.  As I contemplated what losing my job while I was ill would mean, I saw how easy it could be for me to lose my footing and tumble below the line and into financial uncertainty.
I was definitely walking a tightrope without a net.
“Life’s a tight rope and you’re standing on one toe
don’t let the fear take hold of you
or you’re bound to fall to the ground below
pick yourself up again, over the edge again
hold on to your hopes and dreams
when all seems to be lost
don’t start to count the cost
just go and begin again
tight rope walker…
The only thing i’m sure of is to have no fear at all
just go…keep on going on
and the only thing that’s certain is sometimes you’re bound to fall
just go…keep on going on
you know what you have to do…
Alex Clare
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6 thoughts on “Tight Rope

  1. Pingback: Tight Rope | The Chronicles of Mayo

  2. Just wanted to thank you for this series. It really is one of the best things I’ve read in awhile. You are a treasure! I am appealing to the non-deity of your choice for your return to health.

  3. Jesus honey, I am nearly 20 years older than you and two and a half years ago found my auto immune system complicit in an attempted murder of me and lost an eye in the process, (related insofar as immono awol and them trying to save my life.) I am not whole by any stretch, but recovering, slowly.

    You are not even near the end, and while I can imagine the terror and frustration of dealing with recurrence, I have not yet had to attend that party.

    Honey, I love you, you write really well, and have an inner strength that resonates. I am saddened that you have to deal with this shit at such a young age. You have inadvertently made a friend just north of the Kentucky border and if there is anything I can do to help, let me know.

    Hugs,
    Kent

  4. When you’ve got something like this, you think the scary part is facing death. I found that the really scary part comes when you realize that you’re going to live through it.

    • John, I agree. Evan Handler wrote an article in the Huffington Post in 2009 which a friend forwarded to me during this difficult time. Handler was diagnosed with myeloid leukemia at age 24. He was forced to empty his bank accounts in order to qualify for disability and other programs so that he could survive. A quote in this article was especially poignant for me it reads, “I can tell you firsthand: even the most privileged among us are within a millimeter of losing everything to an unexpected illness. I was lucky enough to escape the clutches of what was then considered to be an incurable disease. I had my life. But I was left with nothing else.”

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