“I do not think that means what you think it means”

I feel very strongly there is no situation in modern life for which you cannot find an appropriate quote from The Princess Bride. Seriously. Try it.

Asking your prickly boss for a long awaited raise:
“Have fun stormin’ da castle!”

Signing up with an online dating site:
“Get used to disappointment.”

Running into that bitch from high school, 25 years later:
“Hello. My name is Inigo Montoya. You stole my boyfriend. Prepare to die.”

Oops. Inside voice. Anyyyhowww….

In the so-called “real world” of online life, the opportunities to use Princess Bride as a point of comparison become even more plentiful. To my absolute schadenfreude-y delight, there is a glorious and inexhaustible supply of people out there (known commonly as “fucktards”) picking fights on the Internet from which to choose. Usually with targets who are about a zillion times smarter. And the best part? These unfortunate folks (i.e. “morons”) don’t realize how utterly outmatched they are in the battle.

:::Muhahahahahahahaha::::

So let’s first take this famous Princess Bride scene to illustrate the ultimate miscalculation:

“Ha ha! You fool! You fell victim to one of the classic blunders — the most famous of which is ‘never get involved in a land war in Asia’ — but only slightly less well-known is this: ‘Never go against a Sicilian when death is on the line’! Ha ha ha ha ha ha ha! Ha ha ha ha ha ha ha! Ha ha ha… ” [he stops laughing suddenly and falls over dead].

Remind you of anyone on the internet? FlameBullying has become so rampant on the ‘net its amazing that they keep making the same mistakes. So after a Web Comic called The Oatmeal launched an epic good-trumps-asshole campaign in response to The Stupid, I think we can update that slightly less well-known blunder to “Never fuck with an Internet comic when copyright infringement is on the line.”

If you’re not familiar with The Oatmeal and this latest chapter in their public life, let me ‘splain. No, there’s too much. Let me sum up. A bully with balls bigger than his brain stole an artist’s stuff, posted it on his site without credit and then tried to extort $20,000 in “legal fees” for his trouble. So what’s the punch line? That karma on the internet is fast, brutal and often altruistic.

The Oatmeal’s artist, in his own unique style, announced that instead of paying the thief a penny, he would instead:

1. Raise $20,000 in donations.
2. Take a photo of the raised money.
3. Mail The Bad Guy that photo, along with this drawing of The Bad Guy’s mom seducing a kodiak bear
4. Take the money and donate one half to the National Wildlife Federation (for the bears) and the other half to the American Cancer Society (because cancer is shitty)

Within 64 minutes, The Oatmeal’s loyal online community donated the $20,000. Within 36 hours, the total raised was $155,387. And when the 15 days of this brilliantly simple (and pointed) fundraising campaign is over, I have little doubt the total will come close to a quarter of a million dollars.

The lesson? That the best character you can ever run into on the internet is a bully whose brain was secretly replaced with cold and lumpy tapioca (“Let’s see if anyone can tell the difference”). Because not only won’t he ever get your lunch money, but we will all make damn sure that his mistake feeds everyone else.

INCONCIEVEABLE!

p.s. Have you donated yet? No? Why the hell not? Do it NOW.

Adding it all up

Three years.
36 months.
1,095 days.
1,577,846.3 minutes.
94,670,777.9 seconds.

That’s three years by the numbers. The closet empiricist in me finds comfort in that kind of inevitability, but I’ve actually measured the last three years in a different way.

It’s the amount of time since I was diagnosed with Multiple Sclerosis.

So what? Seriously. So the fuck what? Three years is more than enough time to get used to just about anything, so I’m not at all special in that regard. I have already (over)waxed philosophical about my adjustment to MS’s NewNormal so enough of that shit already.

Now it’s time to get on with it and just be thankful.

No, I am not thankful that I have MS. That would be too “Destiny! The Universe meant for me to have this disease so I can learn how to be a better person and help the world! Yay!!” for a snarky bitch like me. Plus The Universe and I haven’t been on speaking terms for a while.

Instead I offer this list of things I am happy about that is by no means complete or in any particular order.

I am thankful for sunny cool days.
I am thankful for those who love me.
I am thankful for my therapist.
I am thankful for people who don’t treat me any differently.
I am thankful for my pretty new cane.
I am thankful for dark chocolate.
I am thankful for learning what my limits are.
I am thankful for the professional opportunities I continue to have.
I am thankful for having a wicked sense of humor.
I am thankful for medical research.
I am thankful for the American with Disabilities Act.
I am thankful I can walk to my car in the morning.
I am thankful for an employer that lets me be barefoot in the office.
I am thankful for humility.
I am thankful to wake up every single day.
I am thankful for good health insurance.
I am thankful for honesty.
I am thankful to be who I am.

On this 3rd anniversary I make you all a simple promise. I won’t celebrate the next. Or the next. Or even the next. At least not as an achievement.

Because 10 years from now I fully intend for my list to still be accurate (and hopefully expand) and points of gratitude are the only enumerations that will matter.

Count on it.

I Am Here

I’m not religious. I’m not one of the “faithful”. I’m not even a little bit traditional. Yet at this time of year, I find myself looking for deeper meaning in life largely because the religion I was born into commands it.

I can’t tell you how much this sort of Pavlovian spirituality pisses me off.

As a Jew, my job during these “days of awe” between Rosh Hashanah and Yom Kippur is to make amends for transgressions during the past year and swear promises for “being better” in the next. The book of life is open & we must ask forgiveness of those we have wronged before God will write us in it for the upcoming year. For those of us with short attention spans, it’s actually a relief to know God metes out our fate a year at a time. Makes shit easier.

So it’s not unexpected that in the 2+ years since my MS diagnosis, the yearly musing over my own mortality has taken on very different feel. Something more… personal. While I used to go to synagogue and drone though my “al Chet” from memory along with the rest of my parent’s congregation, I now have a new Yom Kippur tradition. And it’s all the Bible’s fault. Let me ‘splain. No, there’s too much. Let me sum up.

During this time of year, the story of “The binding of Issac” is read in Temple. Cliff notes version: God tells Abraham to take his beloved son Issac to Mount Moriah and sacrifice him to prove his unquestioning faith. At the last minute, God calls out for Abraham to stop who then responds with the phrase “Hinneni” or “I am here”.

Rabbis, of course, debate what Abraham meant in his response, down to the language itself. Is there a difference in intent between “I am here” and “Here I am”? Was Abraham simply acknowledging God’s call like the hebrew equivalent of a foursquare check in, or can this phrase hold a much deeper meaning?

That physically being someplace is not at all the same as being present.

If you had to ask yourself which was true for you right now, how would you answer? Yeah. Me too. Thusly, my new tradition: make an effort to be present if I have forgotten how.

Today, as we mourn the heartbreaking loss of Steve Jobs, I am reminded that he always knew the difference. His 2005 commencement speech at Stanford, “How to live before you die”, which followed recovery from his first Pancreatic Cancer surgery, proves that “Hinneni” is a concept he embraced to the very end:

“My third story is about death. When I was 17 I read a quote that went something like “If you live each day as if it was your last, someday you’ll most certainly be right.” It made an impression on me, and since then, for the past 33 years, I have looked in the mirror every morning and asked myself, “If today were the last day of my life, would I want to do what I am about to do today?” And whenever the answer has been “no” for too many days in a row, I know I need to change something. Remembering that I’ll be dead soon is the most important thing I’ve ever encountered to help me make the big choices in life, because almost everything–all external expectations, all pride, all fear of embarrassment or failure–these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.”

So as Yom Kippur approaches this week, I will ask myself if I am really truly present in my life every single day, or just … here. And if the answer isn’t one I am proud of, I will now ask myself one other question:

“What would Steve do?”

Forged in the crucible

Two years ago, this whole thing started.

One morning, my left leg went numb from butt to toe, and I didn’t tell anyone.
I walked on it for over a week, falling when my leg would buckle, and didn’t tell anyone.
I got really scared and knew something was wrong, but I didn’t tell anyone.
I was diagnosed with relapsing remitting Multiple Sclerosis a month later, and I didn’t tell anyone.
I thought my life was over at age 39, and I just. Couldn’t. Tell. Anyone.

It’s very odd to be 24 months removed from that time now. “That what does not kill you makes you stronger” always felt like bumper sticker wisdom. Something worn as a badge of honor to conceal a reality you couldn’t face head on. A placeholder for hope, to carry you through the fire so you don’t feel the burning pain as your life dissolves into cinders around you. A blatant lie perpetrated by polite society, meant to triage a deep wound that everyone knows will ultimately kill you.

[Insert other self-defeating, fatalistic, overly emotional, overblown, angry hyperbole here]

Blah. Blah. Blah.

I’ll admit it – I was wrong. During these last 2 years, I have discovered a truth that my snarky, type-A, “never let them see you sweat” life view would have never allowed me to open up to before. Strength isn’t the end result of surviving a life-altering event. Having it in the first place is the reason you make it through.

I’m not going to blow smoke here or channel Pollyanna with broad “lessons learned” strokes of insight. There have been times in the last 2 years that have sucked out loud, and I know there will be others ahead. To make others believe I was ok, I have faked strength a lot more than I felt it come from someplace truly genuine. It’s hurts too much to let people into your deeper pain, especially when you cannot even parse it yourself. But I’m starting to understand that authenticity is impossible to achieve when it’s not for you, yet it’s the single most important thing to embrace, regardless of the reason why. The process of sharing even what scares you to death, and what you have no answers for, is what teaches us how to be real.

Maybe that’s why I’m starting to make peace with the fact that I have MS, yet know for certain that it doesn’t have me. Or maybe I’m realizing that every single day is an opportunity to move ahead, not look back. Or maybe, just maybe, I can really see that I’m still me, and that life is mine to live, not for anyone or anything to take away.

I can say, without reservation, that the days I think about having MS now are rapidly being replaced by days than I don’t. After 2 years, I see that the fire inside is stronger than the one I am walking through, and want to believe that nothing, but nothing, can ever put that out.

Baby Steps Towards Sanity

I, along with 218,999 of my closest friends, attended the Rally to Restore Sanity yesterday on the Washington Mall. You’ve seen the funny signs. You’ve watched the crowd coverage. You’ve heard the pundits talk about the anti-pundit sentiment expressed (in an ironically meta way). But I personally experienced something pretty amazing that no one is talking about: The degree to which people with disabilities participated in the event.

I’ve never been a Rally Rat, even before I was diagnosed with MS a year and a half ago. I’m not a huge fan of large crowds, standing around for hours, or listening to someone yell at me (for good or ill). Watching big public events on TV always felt more comfortable, safe and low impact.

Since my diagnosis, attending events like this seemed to be impossible, although I’ve been conflicted. I use a cane because of weakness in my legs and poor balance, but haven’t yet accepted the notion of being “disabled”. I’m not in a wheelchair, but walking/standing wears me out. My permanent handicapped parking tag just arrived, and have extremely mixed feelings about it. So many people have it so much worse than I do – what right do I have to take advantage of the same “benefits”? Instead, I’ve either sat out events or given up doing things I used to love, either out of fear, frustration or embarrassment.

When Jon Stewart announced the plans for this event, I knew I had to be there – somehow. However I was worried about the idea of walking a long distance to the rally, only to be on my feet for hours. When I learned the rally was going to have a special ADA section reserved on the mall, and a free shuttle from RFK stadium to within a block of the rally, there was no reason to let my fear get the best of me. It was time for sanity to prevail – this time, my own.

But that was just the start of an amazing story.

The Rally organizers not only underestimated the total number of people who were going to attend, they had no idea what their ADA support would do. The small area reserved for people with disabilities was full by 9am. By the time I arrived at 10:30, the rest of us were directed to fill the sidewalk, grass and curb on the blocked off 4th street. At 1pm, we were 4-5 people deep, with more wheelchairs rolling down the street by the minute. I’ve never seen anything like it.

The people I met inspired me beyond words. There was the woman who drove from Kansas to DC after her last Chemo treatment on Thursday. The man with prosthetic legs from both knees down. Others in wheelchairs who would not be kept away, no matter what. While everyone said they couldn’t have been there if it weren’t for the Rally organizer’s sensitivity to the needs of people with disabilities, no one felt like less of a participant because of it. I was honored to be in the presence of such strength and bravery, and it takes my breath away just thinking about it.

After the shuttle dropped us off, my friend Kim and I were pushing through the crowd to get to the ADA section when we met Nelly, a young woman with Cerebral Palsy. 30 years old, using forearm crutches since she was a child, her strength, both physical and emotional, was nothing short of stunning. With a smile on her face & genuine joy in her heart, she talked about adjusting the way she lives her life, without letting her disability keep her from really living. She was anything but a sad victim – she was asbsolutely in control of her life. I could learn a lot from her, and we needed to become good friends, she said. I couldn’t have agreed more.

Not only did the people with disabilities at the Rally show me an indomitable inner strength I can but aspire to, the community as a whole was remarkable. Ive never been around so many people with a positive attitude, care for their fellow man, and a real hope for a better future. I credit that solely to Jon Stewart, whose final “statement” at the end of the rally was one of the most amazing speeches I’ve ever heard, President Obama included.

“We hear every damn day about how fragile our country is, on the brink of catastrophe, torn by polarizing hate, and how it’s a shame that we can’t work together to get things done, but the truth is we do. We work together to get things done every damn day.”

The people at the rally didn’t need to be convinced of that – they showed it. Earlier in the day, when it became clear that the only place to sit was going to be on the ground, an older gentleman standing in the non ADA area offered his double folding chair to Nelly & I. As someone who has never been comfortable asking for or taking help, my first reaction was – I don’t need it, give it someone who needs it more. But my friend said “Its ok, take the help” and I did. I never found out this man’s name, or got his contact information so I could thank him after the rally – that’s not why he did it. He offered us his chair (and stood the whole time himself) because he knew it would make our day a just little easier and that bowled me over.

Life can be difficult enough without dealing with curveballs like illness, disability & other supposed “limitations”. For a few hours on a beautiful sunny afternoon, I became acutely aware that I’m not at all alone. Jon Stewart said it best at the end of the day:

“Because we know instinctively as a people that if we are to get through the darkness and back into the light, we have to work together”

We all took that first step yesterday.

Get on with it

As my friends & family would readily (and wearily) attest, I think too much. Plan to the extreme. Calculate all the scenarios. Know all the exit routes and alternatives. And pretty much, drive people nuts. So, what happens when you combine a type A freak like me with a decidedly un-type A disease like MS? K-A-B-O-O-M.

No amount of planning or forethought could ever have predicted I’d get this… thing. No schedule can accommodate the moving parts of my life that may or may not need to change because of this new state of being. And even worse, nothing – NOTHING – can predict what’s going to happen next, no matter how much I try.

In the 15 months since my diagnosis, all this thinking has led me to one big thought: the thinking has gotten out of hand. It’s time to just DO. I think they call this phase “Acceptance” in psychobabble terms. I call it something else: Rebirth.

People who I have never met – A group of fellow MS’ers on Twitter and an older man I see on my daily commute – inspired this shift in brain power and I will forever be grateful.

I first saw the older man a few years ago. I was driving into work, my head full of too many thoughts, when I saw an old fashioned boating hat moving along the sidewalk. Attached to it was a small, frail looking man, probably 80-85, in a button down oxford and khaki’s. And he was jogging. Slowly, deliberately, with a singly determined focus that caught my breath, he kept going. I thought I was seeing things, headed to work and vowed to take it easy on the caffeine.

The next day, I saw him again, and knew I wasn’t hallucinating. And then the day after that, and the next, and the next. Except for really extreme weather, there he was every morning, putting one foot in front of the other, seemingly not caring about anything but the journey & a goal that only he knew. Seasons passed. A new president was elected. I got diagnosed. People the world over struggled with disaster, heartbreak and tragedy. Life rolled on.

And. He. Kept. Jogging.

Fast forward to a few months ago when I became part of a vibrant Twitter community of people with MS. At first I engaged slowly. I’ve seen many an online forum dissemble into the “woe is me” and “I have all these weird symptoms and you’re gonna die” hyperbole, so I didn’t want that in my life.

What I did find, however, was not short of remarkable. These people – the #MSposse – many of whom have more advanced MS than I, are just out there, living life. Sharing their fears, triumphs and hopes for the future in a way I’ve honestly been afraid to since my diagnosis. Even though many of them live in the UK, they felt as close by as my next door neighbor (who I never really liked anyway). It felt safe to talk to these “strangers” about what I experience on a day to day basis (physically and emotionally) and through their enormous appetite for life I found my own returning.

So now if I start saying “I cant do that” or “Why did this happen to me”, I think about these people – the older man & the MSposse – and know they will remain Talismans in my life. Because no matter what happens, you just gotta keep on moving.

It’s time to get on with it.

Hate on you, motherfucker

I’ve been hated for many things. Hated for being Jewish. Hated for being educated. Hated for coming from a “good background”. Hated for being a woman. Hated for speaking my mind. Hated for having a mind. Hated for who I voted for. Hated just because someone wanted to hate.

But there is one thing I thought no one would hate me for: Having MS. Shockingly, I was wrong. I’ve heard people hated what they don’t understand, often as an unconscious act of jealousy. But MS? Seriously? I was shocked that this would fly on Twitter, unprompted:

I will usually give people a pass when they don’t understand MS. Hell, *I* don’t understand it, and I’ve got the damn disease. But being confused about MS is not the same as hating people who have MS, or any quality deemed “weak” by assholes who were raised in a barn. Unable to let it go, I stupidly fought back:

Anyone wanna guess how THAT worked out? Yeah… pretty predictable FAIL:

Moral of the story? I suppose it could be: don’t try to “educate” someone who wears ignorance as a badge of honor. Or maybe: People judge what they fear and don’t understand. Or even: Bullies will be bullies.

But that’s all bullshit. This is the real moral: Judge lest you be judged, motherfucker.

The gloves are off. I’m done taking the high ground, being the better person, blah blah blah blah blah. So for those who have trouble with big words, let me define a few that may have escaped your stupid, right-wing, uneducated, married-your-sister-after-you-knocked-her-up lexicon:

Multiple Sclerosis:
Abbreviated MS. A disease of the central nervous system (CNS) marked by numbness, weakness, loss of muscle coordination, and problems with vision, speech, and bladder control. MS is an autoimmune disease in which the body’s immune system attacks myelin, a key substance that serves as a nerve insulator and helps in the transmission of nerve signals.

Compassion:
The feeling of distress and pity for the suffering or misfortune of another, often including the desire to alleviate it

Responsibility:
The state of being responsible, accountable, or answerable; A duty, obligation or liability for which someone is held accountable; The obligation to carry forward an assigned task to a successful conclusion.

Ignorance:
The condition of being uneducated, unaware, or uninformed.

Asshattery:
1. The act of displaying properties or characteristics of an asshat. This includes but is not limited to wearing your ass for a hat or saying/commiting an act that causes the audience in presence to become dumber.
2. The art of becoming or practicing flagrantly being an asshat.

Inner strength:
What asshats will never have.

Telling it like it is

Yippee ki-yay. Class dismissed.