There is nothing in this blog post you haven’t heard before.
Considering the great expanse of time and humanity, all the
stories have been written, the songs sung, the finer points made, highlighted,
underlined and punctuated with an exclamation point. Dust thou art, and unto dust shalt thou return.
You were born. You fell in love. Your heart was broken. You
did something you thought you couldn’t do. You failed miserably. You said
something hilarious and forgot about it 10 minutes later. You felt the
bittersweet pain of empathy by crying when someone else hurt. You experienced a
loss so profound you didn’t know how to cry.
Somewhere out there, in 2005, a 21-year-old named Bridget
was diagnosed with Stage IV breast cancer. She was falling in love with a man
who would love her back – even through chemo, baldness, clinical treatments,
temper tantrums and fear. When she was diagnosed, he told her to put on a party
dress so they could go out to dinner and discuss how they were going to deal
with it.
If that isn’t amazing enough, Bridget lived in a society
that stamps pink ribbons on t-shirts, novelty socks, key chains, and yes, even
packaged food. But a few months before her diagnosis, medical professionals
told her she didn’t need a mammogram when she found a lump in her breast. They
told her it was just fibroma, nothing to worry about.
Only, it was. Her family thought she looked a little yellow
when they came for her college graduation. Jaundice and breast cancer that had
spread to her liver.
And so, the girly-girl who was so lucky to have fallen
profoundly in love was left feeling so very alone as she went to one breast
cancer event after another populated by grandmas and the grey-haired. She cried
and felt much older than 21.
The general line of her story has been traveled by hundreds/thousands/bajillians
of women who loved and were loved but still were diagnosed with a horrible disease
at a very unfair time. I like Bridget’s story, though, and I’m still reading
it.
Decades before Bridget was diagnosed, Susan G. Komen was
diagnosed with breast cancer in 1977. She decided to get through treatment
quickly so she didn’t upset her kids, had a mastectomy, and was told by her
surgeon she was “cured.”
Only, of course, she wasn’t.
As she was slowly dying, she read to children in cancer
wards in Houston and Peoria (where she was receiving treatment herself) and
created a laundry list of things she would do when she got better: paint the
waiting rooms and chemo wards a cheery color, add some classical music, have a
luncheon to raise awareness about some new mammogram technology. (Because
that’s what everyone wants to discuss over lunch?)
She died on Aug. 4, 1980. Her sister, Nancy Brinker, didn’t
just have a luncheon. She started an organization that would host a myriad of
walks, races and fundraisers and distribute more than $1.5 billion for breast
cancer research, services and advocacy. Brinker had made her sister Suzy a few
promises – and kept them.
You’ve probably heard of dozens women who sparked movements
that would become profound, cliché, mocked and revered past anything their originators
likely imagined. I recently bought Promise Me, the memoir charting Susan G.
Komen’s story with the path of the non-profit organization. I’m still
reading it.
Susan G. Komen died a year and 20 days before I was born.
She died five years, three months and 22 days before youdownwithptc.blogspot.com’s
author was born. If you know youdownwithptc.blogspot.com’s author at all, you
probably know that 26 years after her birth, the axis of her world shifted.
She befriended me. Wills.
This, too, is a story you’ve heard before. Two college-educated Midwestern women
bump into each other over and over again in a small town. They utilize
hyperbole and sarcasm to make fun of everything they think is funny, boring or
downright horrifying. Suddenly, they find themselves explaining each other’s
jokes to people.
There also have been a few instances in which I suggested
something as a joke, she thought I was serious, and she charged forward with
such abandon that I didn’t have the heart to tell her it was a joke. (I’m sure
she’s done the same to me. In fact, I know she has. I fall for it ALMOST EVERY
TIME. It’s cool.)
Anyway, that’s not really what rocked youdownwithptc.blogspot.com’s
author’s world.
She was diagnosed with
Idiopathic Intracranial Hypertension
– which essentially means her body doesn’t absorb spinal/cranial fluid as
quickly as it should, so pressure builds up and causes all sorts of problems.
Untreated, it causes blindness. With treatment, it still causes severe
headaches.
Since then, she’s baked cookies. Started this blog. Been
interviewed by local media. Brought Rare Disease Day (which, strangely enough,
is NOT on Hallmark’s radar) to our attention. There’s been some vague talk
about a fundraising walk or Bags for Brains or something.
She’s also spent some time talking about the lack of research
focused on her disease, the lack of disease-specific medication or support
groups and why she cannot possibly have children any time soon for fear they
will be diagnosed with IIH when they are 26. Then, of course, they will hate
her.
Sometimes she feels alone. Sometimes she gets sick of
talking about her condition. Sometimes she wishes more people were talking
about her condition. I think she sometimes cries in the car.
I, too, have had a few quiet moments when tears trickled
down my cheeks on her behalf. Empathy is like that: You know you truly care
about someone when it hurts you to see her hurt. And, well, damn, it’s
different from the empathy you feel for people on TV or in news articles.
She doesn’t occupy the same state as Bridget, or the same
decade as Susan G. Komen. I don’t believe she has a sister, and I’m not sure
how seriously anyone should take her brother’s promises.
What I do know is this: She won’t be the last person
diagnosed with something weird, painful, and annoying, and she won’t be the
last person to declare – as she did on Feb. 23 – that she was going to make
sure some relatively unknown disease becomes as well known as cancer.
But she’s going to do it. Or have a hell of a good time
trying.
And, from time to time, I will be there. I’ll be painting hospital
waiting room walls red (or purple). I’ll be planning luncheons to talk about
brain machines (or whatever). And for goodness sake, I’ll go ahead and say it
now: What would be more perfect to serve at Bags for Brains than Jell-O shots
molded like brains?
Keep reading. This story ain’t over yet. You haven’t heard
the last of this girl. And you’re certainly going to hear more about IIH.
Dust thou art, and unto dust shalt thou return. But thou might
as well dance in the dirt while thou art here.
This is all. There are no more. Just these firsts. I mean, I am sure there are more things that I don't know about but this is all there was at the museum.
Over there is typeset from a printing press and over there is an electric car. I thought the car looked like a boat. It made me giggle.
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