Friday, August 30, 2013

Kevin Help Us

Sometimes, you can find encouragement and enlightenment in unexpected places. I heard this quote recently:

“Do stupid shit that’s cool. It helps.”

I know what you are thinking. But no, this quote is not from the wisdom of the Buddha or the writings of Rene Descartes. I heard this quote while listening to a podcast.

I love listening to podcasts while I am doing mindless activates, such as housework or online dating. One of my favorite podcasters is writer/director Kevin Smith.

I don’t even remember in which of his podcasts he said this. But I remember hitting the tiny iPhone button that rewinds the audio 15 seconds. I listened to it again, and I wrote it down.

Aside: Do we still rewind when there is no longer any audio that is actually on tape?

Anyway, I dig Kevin Smith. I admire his writing ability, his voice. I like that he curses a lot, just like me. I like how he became a filmmaker. He just decided to be a filmmaker. Then he did it.

In his book Tough Shit, he writes:

“There’s a trick to being whatever you want to be in life. It starts with the simple belief that you are what or who you say you are.”

Most of the things I "am" are not because of a calculated decision on my part. I am technical writing for a living, because the first job I got after graduating--with a fairly useless communications degree--was writing for the software industry. It was serendipitous that I found a writing job where I could be part of an exciting industry. It was also unstable, because that is how the software industry is. But am I a technical writer? That isn’t what I want to be in life.

I have an amazing son, which is great. But motherhood happened mostly because that was just the path that I thought I should take. Being a mom was never something I dreamed about being as a young girl. I was married, I was approaching 30. I thought a baby was what was next. I wouldn’t trade that pisser of a kid for anything in the world. But is a mom who I am?  I’m not sure. Maybe?

I certainly never want to think of myself as sick. I don’t feel sick. I don’t know what having a chronic illness is supposed to feel like. But right now, MS is mostly in my head, as well as my brain. I think about it all the time. It’s never very far away. I know I have to accept the fact that this is my normal. But I refuse to believe that I am anyone’s patient.

I want to be a Derby Girl. I want to be tough, and strong, and powerful. I believe I am a Derby Girl. I am terrible at skating. I struggle with endurance. I still haven’t done that damn crossover. But I am learning and training. I’m not going to be a Derby Girl. I am a Derby Girl. Believe it.

So do some stupid shit every once in a while. Chase a dream. Believe in yourself. It helps.

Thursday, August 29, 2013

The Internet Ruins Everything

I’m a Googler. When Dr. Sister was first talking to me about my MS diagnosis, one of the things that she told me to do was to stay off the Internet. This is why:

Here are the first few headlines on my Google news alert for Multiple Sclerosis. (Yes, I did stay off the Internet. For a good 45 to 50 minutes.)

How Will the Obamacare Out-of-Pocket Cap Delay Affect MS Patients?
Studies have shown that MS has one of the highest associated out-of-pocket expenditures. So this delay means that many MS patients will have to wait another 1-2 years before they see any financial relief or benefit. I am very, very lucky to have great health insurance provided by my employer. Without insurance, my weekly shot would cost me $37,544 a year.

New Study Casts Doubt on CCSVI as the Cause of Multiple Sclerosis
I’m not sure what this story means, except that scientists know a lot about what doesn’t cause MS.

FDA Probes Rare Brain Infection In Patient On Multiple Sclerosis Drug Gilenya
Because there wasn’t enough to worry about.

Then there is this:

Hey Sharon, I know you love your son. And People magazine cover editors, I know you want to sell magazines. But maybe we shouldn’t be perpetuating the myth that MS is fatal. I mean, no more than life is fatal. Wait, maybe Sharon meant she was going to turn Jack into a vampire? I smell some fan fiction!

And this:

Hey, who doesn’t deal with it like that? I know that my equestrian therapy not only eases my symptoms, it boosts the economy by employing my stable mucker. And my lawn has never been greener with all that horse shit. What's that you say Fox News? If we talk about Ann's horses, no one will notice Mitt's politics?

And don’t you love this one?

This was referenced on an MS support website. Doctor Death, the euthanasia guy. On a website about how to support people with MS. Really.

Even my beloved Amazon can betray me. Here is one of their top suggestions for reading up on MS.

Who knew it was that easy to overcome this? What the hell have I been bitching about? The secret to recovery can be found in these pages, and it can be yours for $18.75.

Yeah. Stay off the Internet. Well, except to read my blog.