I am East Berlin in January 1990

“Great title, Katie” I told myself.

Two weeks on and I cannot seem to finish this post.  I will give it a go again this Mother’s Day morning.

I have had a few weeks that were relatively good, since my power port was put in. But, then I overdid it and tried to eat a few normal things so now I am having a flare of pancreatitis that caused me to be very sick. So, it is no surprise that  I spent  six miserable hours in the Seton Main ER last Monday which ended up in me being sent home, still in pain–and the doctor telling me he couldn’t treat me because he saw no evidence I have chronic pancreatitis.

I tried like crazy to explain to him why it is not visible on a CT scan and why it doesn’t show up in the blood work.  I even asked him to please read my chart and call my gastroenterologist.  But, he was having none of it.  He sent me home with a bunch of prescriptions for things I either have or I am allergic to.  And he suggested I go to a clinic the next day since he did not note I have a primary care doctor or pain management.  I have both and I had told him that!

He told me it was illegal to give me more pain meds without proof of a disease.

That was patent bullshit and I know it.  He had decided I was drug seeking and that was the end of it.

I am not doing emergency rooms anymore unless I have a hand written note from a doctor or a doctor calls ahead for me.  I have even taken the step of copying out all of the paperwork I have on hand from my pancreatitis diagnosis and writing an intro letter that includes the names of all of my doctors and my diagnoses.  Maybe that will help.  I don’t know.

Last week, I went to see a surgeon about having the egg sized hernia on my upper right side removed. My rheumatologist and my pain specialist had both said it needed to come out.  She reviewed my chart and said, ” I will not operate on you due to the fact that you are complicated and that it will probably come back because you are so fat.”  When I asked her what I was supposed to do about the hernia, she said, “Get it out when it becomes strangulated… i.e… a life threatening emergency.”


It turns out she was a bit out of line and that my pain doctor’s referral for my port went to the wrong surgeon, etc. So, he is now referring me to the “right” surgeon so I can get the hernia removed; pre-emergency, hopefully.

But let me get back to that wall. The Berlin wall fell in November of 1989.  And by January 1990, the absolute high of the moment was wearing off a bit but it was still an ongoing process for those who lived in Berlin; the once divided city and great symbol of the Cold War.

When the wall came down in Berlin, in the East, people who had been locked into a gray scale world of suspicion, fear, deprivation, and monotony were able to do more than just  see the glittering towers of  the forbidden west. Finally they could actually touch them.

The Easterners, as the Germans refer to them,  had known there was something brighter on the other side of that wall but they also knew that to try and get to it, they very well might die in the attempt… (of course, many did).

Some people had endured the Communist regime’ by embracing the system.  They became the eyes and ears of the infamous, “Stasi” or secret police.

A friend of mine who grew up in East Germany told me that because her family would not renounce their Christianity, they were not members of the communist party. So, after Germany reunited, she and her mother went to look at their Stasi files.  The people who had been watching and reporting on them the whole time were their neighbors, whom they considered friends.

These people, the ones who have lived both under the heavy hand of twentieth century communism and then become a part of the glittering and yet confusing world of “democracy” are wounded:  I know many of them.

They have a real difficulty believing that anything that comes from an authority figure is not designed to make them fail.

They also have a sort of paranoia about being too trusting or too open or too optimistic.

They are suspicious in a way those of us who grew up in the west, just don’t really understand.

That is not to say they are not, in my experience, elated and curious and forever grateful that the system broke down; but they are just wary of having the same sort of calamity, brought on by misguided (at best) or despotic, neurotic, power hungry governments.

(Just as an aside here.  I have read Karl Marx.  I know the original ideas espoused by communism were good ones.  They just didn’t go well at all when put into practice by men.)

“So, Katie” you are thinking, “what is the point here?”

I am getting there; I promise!

One more thing, which is kind of funny and very ironic, is that in Eastern Germany there were no bananas.  So, when the wall fell down, the Easterners ran rampant through West Germany buying all the bananas they could get their hands on.

When I was living in Germany in 1990/91. I remember hearing people (we were in the Southern corner of the country on the Swiss border) moaning and groaning about Easterners taking their damned bananas.

In 1993, when I did an internship in Berlin for the summer, I could still hear the grumbling but it had gotten worse, “I wish they would put that wall back up and just feed them bananas.”


So, how am I like the wall and like the Easterners?  I have recently had a glimpse of the bright and glittering city I used to inhabit. You see, I came from the West originally. But, for several years now, I have been living under a different regime’, where all is grey and hopeless and desperate, and everyone is sad and angry or just plain mean.

But lately, I have made it to the top of the wall.

I saw there were a lot of people like me up there.

We are all just dismantling the thing piece by piece.  We tear off a chunk and pitch it to the ground, grunting with a combination of all our pent up anger and rage.

It appears as though we might have actually won our freedom.

But, what does that mean?

What is freedom going to look like?

It is going to be different than before; that much is obvious.

It will never be the complete freedom from worry and pain and mortal danger that we earlier took for granted. We have our eyes wide open.

We are jaded now.  Jaded by our bodies having turned on us in surprising ways and by a medical system that chews up and spits out those who cannot be easily “fixed.”

We take nothing for granted and we are very suspicious; paranoid is perhaps a better word.

Every time the pain gets overwhelming and the gray curtain of iron that is our prison, descends, we are afraid we will never be able to get back to the top of the wall and make it back to the other side.

But, lately, I have begun the work to build a little home for myself in the West.  I am rebuilding my own walls so that I have a view.

I have just begun so the work is ongoing and will be for a long, long time.  But the idea is that I have hewn out a chink in the Berlin Wall that is Katie sized.  It is just big enough for me to get through each time I have to go back to the East.   On each trip, I will learn to take more and more supplies that I might need when I am behind the curtain, on the east side of the Wall.

These supplies, which are psychological and therapeutic in nature, will give me what I need to survive each trip back and forth.

And hopefully, if I am lucky, I can get some bananas to take back to the others:)