Thursday, June 6, 2013

The problem with vascular tumors of unknown etiology

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 of control over them.

This does not have anything in particular to do with depression, actually. But it is one of the best things I've read in quite a while, and does address issues of being ensnared in the world of modern medicine. It addresses many other things as well: family and love and courage and strength. It is smart and funny and inspiring.
Go to Chronicles of Mayo, scroll all the way down, and then read your way up.

It is the story of Stephanie Fahs and her journey after being diagnosed with a "benign" tumor. The discord between the normal use of the word "benign" and the way it is used in medical contexts suggests a very dark and twisted sense of humor on somebody's part. As a reminder, here is the definition from Merriam-Webster online:


: of a gentle disposition : gracious <a benign teacher>
2
a : showing kindness and gentleness <benign faces>
b : favorable, wholesome <a benign climate>
3
a : of a mild type or character that does not threaten health or life; especially : not becoming cancerous <a benign lung tumor>
b : having no significant effect : harmless <environmentally benign>

Keep that definition in mind as you follow Stephanie's travails.

I suppose the issue with "benign" does have one tenable connection to depression, or at least dysthymia. Dysthymia is often called "mild" depression, but one might argue that the more florid, spectacular sorts of major depressive episodes are, in terms of a lifespan, more "mild" than dysthymia. There is nothing mild about the way dysthymia chronically lays waste to a life.  Major depressive episodes might be analogous to periods of intense physical pain, the kind of pain that places you on the floor in a fetal position; dysthymia is like the chronic "low-grade" pain that discolors every experience and deadens every joy across years and years. There was nothing benign about Stephanies' tumor; there is nothing mild about dysthymia. Medicine probably needs better ways to talk about these things.  

Anyway, there are many great moments in Stephanie's posts, but this might be one of the best, from when she begins to suspect that her surgery has wiped out her sense of smell:

I also associate smell with people.  If you asked me to tell you about my parents I would tell you what they look like but in my mind I would also be thinking about the fact that when I was a kid on Sunday mornings I would run and jump up on my parents bed and watch cartoons while my dad was in the shower.  When he came out we would lay side by side on the bed and read the paper.  Well we read the comics together anyway.  It was all I was really interested in as far as current events.  He used Pert Plus shampoo, Coast bar soap, and wore Stetson cologne.  The juxtaposition of clean crisp scents with spice sticks out prominently in my mind when I think of him.    My mother used ivory soap and Vidal Sassoon.  A mild soft smell that was faintly floral and feminine.  I used to use her shampoo when I would take showers as a kid because I wanted to “smell pretty” like her.  Johnson and Johnson was for babies, I wanted to be a beautiful woman like my mother.  My brother wears LaCoste sport, my granddad wears Polo mixed with the smell of his old sweaters, and the thought that I would never be able to breathe in this defining characteristic of another human being as I hugged them was almost too much to bear.
 And I'll leave the last word to Stephanie:

And most importantly if you are going through a chronic health issue like I am,
 never ever ever give up.

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