Saturday, November 12, 2016

When something is actually important, I can never find the words

Jesus healed the sick.

Moses parted the Red Sea.

And, now, ladies and gentlemen, I present my own miracle:

I successfully changed someone's mind via Facebook.


No, seriously.


Over the course of my life I have received a handful - maybe 8? - letters from people whose lives I have somehow touched.

Tonight, I received one such letter.

The note came to me via Facebook, and thanked me for having the courage to stand against the closed-minded and combat them openly with reasoned argument.

This stranger, who lives in Michigan, said she was moved by my stance, and would no longer be silent should she ever again witness inequity or injustice.

Though still extraordinarily sick in my body, in my heart I feel better than I have in a long time.

For why are there 7 billion of us on this planet if not to interact with and learn from each other?

And the idea that some - however few - of my ideas and experience are worth learning from is incredibly humbling.

And awe-inspiring.

In truth, I cannot fully grasp the concept that there is power in my ideas...

I don't think there is a greater calling than to positively impact the life of another.

That said, I want to publicly (as much as is decent) thank the woman for reaching out. For in doing so, she touched me as well. She brightened my day. She gave me something of which to be proud.

So I was blessed by her outreach.

There are likely a thousand lessons that can be extrapolated from this interaction. Glean from it those lessons that strike you as most profound for your own situation.

But in the mean time, I hope this little missive has convinced you that there are, in fact, modern day miracles.

Now go forth, my friends, and argue on Facebook!

Thursday, November 3, 2016

Perspective: That's One Way To Look At It.

Throughout my illness, I have wondered "why me?". What happened to me is relatively rare... Many of you have taken the drugs that decimated me. So why did you escape unscathed?

But here's the thing - I had the craziest, most lunatic thought - all of the terrible shit I am experiencing - most if not all of you will never experience it. I envy you this... but it also makes me... special. Freakishly special, but special. It gives me a unique perspective that most will never understand or be able to share.

Don't get me wrong - I'd trade my immortal soul to undo what's been done - but it's something positive I've been able to take from this. I've always valued experiences over all else. I wanted my experiences to be all adventures. And in a way, this is an adventure. A terrible, godawful, wouldn't wish it on Pol Pot adventure.

This adventure might kill me. That's not hyperbole. But then, I've skydived and that might've killed me. And bungee jumped. That might've killed me.

I told Scott the other day that, had I remained healthy, I would have lived the last year and a half completely differently. Had I, there's no telling what could've happened to me.

Not to trivialize, but it's sort of like that not-so-great movie "Sliding Doors" where Gwenneth Paltrow's life is greatly altered by whether or not she catches the train. Each "life" that follows - the one where she makes the train and the one where she doesn't - has its positives and negatives. I guess that's the nature of life. All of us will be dealt a mixed hand.

I'd do anything - anything - to change the hand I've been dealt. But even now - with every system of my body affected - with no help of treatment - with little recognition of my man-made "disease" - I live. It's a life of pain... but...

My sister died in a car accident when she was 16. Fortunately, she was killed instantly and did not suffer. But she only got 16 years. I was granted 34 healthy years. I still feel robbed. 34 is still so young. But I got more than double what Madison got. Why?

These are my attempts at positive thinking.

They're feeble - I'm aware of that.

But, frankly, I am very low on hope. The more that goes wrong, the more I fear and despair.

Maybe I shouldn't be so candid about these things. But "Tuesdays with Maury" was a best seller. I think people are actually very interested in people's perspective's when they're sick or dying. Whether it's healthy or not, I think people kind of want a mental crash course for when or if it ever happens to them.

And, after all, I didn't think it would happen to me. Odds are very good such a thing will never happen to you.

Please count your blessings every day. No matter how small.

Things I took for granted all of my life - like a good night's sleep - would be so precious to me now.

Embrace your children. Some don't have the luxury of having them.

Clean your home. Some people can't.

Love your body, no matter its imperfections. You may have to lose 30 pounds. Who fucking cares? If you can walk and sleep and breathe and see... you have no idea how lucky you are.

I never thought my "happy thoughts" would be along the lines of "I may go blind. Helen Keller was blind. Erin, you may have to learn to navigate the world with no eyes. If you do that, you'll be one of the strongest people you know."

I've always said I'd rather be weak with an easy life than strong with a difficult one. Life thought otherwise.

Pray for me. Pray for you. And for each other.

Things have gotten so contentious lately. People hating each other over the growing political chasm. Realize your hate is a luxury. That you can focus on and have the feels about the shit spew a politician oozes... this is a luxury. If you thought you were losing your eyes... suddenly there are bigger things than small people with small ideas.

I'm rambling. I've likely lost you by this point.

I don't want to fade.

I don't want to die.

If I go, will you remember me?

Is my struggle worth something? Or is it for naught?

I just wanted a home and a family with my husband.

I don't want to fade.

I don't want to die.

If I go, will you remember me?

Wednesday, November 2, 2016

Desperately seeking something

I can tell you about the pain

the torment

the fear

but is that all I have to say?

Where once my mind was free to ponder the intricacies of the universe and the human condition - at least as I understood (or tried to understand) - them

it's now consumed with fear

of what horrors await me

and regret -

most potent -

of what I would do differently

of the signs I missed or ignored.

Occasionally I allow a dalliance into the life I'd have

if I hadn't taken the pills

or if I'd stopped at two

when the side effects started.

The memories are so vivid,

I feel I could reach out and touch them

which makes me think I can change them

because they're still within reach.

Aren't they?

But then, I always feel this way

with every tragedy of my life.

For years Madison seemed to be just beyond the veil

a mere inches from my fingertips

just past the curtain on the plinth.

I know I want to say something

that will stand the test of time

and tell my story when I am gone.

I want something to stand here in my stead

when I can no longer stand

or speak

or think.

I want immortality in that way.

I want to matter.

I thought, when I took those pills, that I had more time

to make myself matter.

But Madison already taught me better.


We lost Andrew too early.


Yes, I cannot say I was not presented with the lesson

the question

of legacy.

And what will mine be?

A tragedy?

One defined by its ending?

By its sharp curve in the road?

By what should have been?


I see them sometimes - the children I might have had


I have to stop there.

Even I have things I cannot share.

I can tell you about the pain

the torment

the fear

but is that all I have to say?