An Open Letter to Myself, To Be Read 10 Years From Now

Dear future self,

Congratulations, you’ve made it to 41. If you’re still living in your parents pool house, don’t feel bad. We all move at our own pace. I hope this letter finds you well. You know, I normally hate that line, mostly because it’s hardly ever genuine except as an ice-breaking device used in emails just before asking for something, usually money. But I mean it. ‘Well’ is pretty relative term, but you know what I mean–better. Better than today. It’s November 5th, 2015.

For record-keeping, I’ll set the scene. I’m writing from bed, the computer in my lap and Monty sleeping on the edge in his spot. I am achy, heavy-bodied, and nursing a head-ache that now spans the entirety of my face. It’s strangely resistant to pain medicine so I use frozen peas to numb it. I feel the force of gravity pushing against every move I try to make. Standing up makes me dizzy and faint, so I’ll spend most the day sitting or supine. (POTS) My brain is fuzzy and clumsy. My thoughts come fast and then stutter and mix up on their way out. Writing is better than speaking. It’s more patient. My heart mimics hummingbirds and butterflies. It makes this audible “clicking” sound whenever I lay down, like my own cardiac stopwatch in which to keep time! My blood pressure spikes and drops, making simple things hard, like showers and teeth-brushing. (Dysautonomia) So I stay horizontal–a term my specialist uses and advises on days like today. But the Interstitial Cystitis makes this part harder. I peed 12 times last night! A new record. But who’s counting? This is how crash days go. Another part of the disease that goes mostly unseen.

Greetings From 2015
Greetings From 2015

But let me interject. The point here is not to belabor on about life with illness. This is simply the physical state of things, and the more important point I am making is that I am OK.  I’m not living a life that looks anything like the one I planned for, (haha, plans) but I’ve found meaning here too. I’ve forgiven what my life was supposed to be, and grown into the one I have. It’s smaller-sized than the one I dreamed of, and it bewilders more people than it impresses, but I’ve actually learned to like it here. Every day despite health and money and a recently sad surplus of dead animals in the pool, I crawl into my bed at night and it hits me that I’m OK. A small flick on the side of my head.

Is it a contradiction to say you’re fine but also expect change on a large scale? I hope not. But it’s partly the reason I’m writing now. I detect a shift underway. I hear a slight buzzing sound behind the drone of everyday life, and it hints at considerable change to come. I hope in time this letter will be a relic from an era long gone. I hope it will be a nearly humorous account of the way things used to be once, but that it won’t sound all too familiar. I hope that physically I’ll just barely be able to recall it, like the name of a childhood teacher on the tip of your tongue. That’s my hope, but who can know? Just in writing this I can feel my future self alive somewhere; that she exists on some unknowable plane, and that when she reads this letter it will make her happy.

It’s my belief that if I’m not cured by the time I read this, that my mom will have shot me like I made her promise to. Only joking calm down. If I’m not cured, I expect at least to be a much higher-functioning version of my present self. I should be able to work at least a few days a week, to attend (and dance at) a wedding, or to go on a bike-ride and not crumble for days after. I don’t see this as wishful thinking or as the result of divine intervention. I see FDA-approved, effective treatment options as an only natural, foreseeable byproduct of the serious research to come by governing agencies like the NIH and the CDC. As I write this, there are zero approved treatments. My 25 pills a day are mostly bandaids on a broken knee.

Up until now, the world hasn’t quite known what to do with someone like me, like us; chronically sick people who don’t get better and don’t die. And I understand their unease. This is all relatively new, and we just haven’t developed the etiquette for it yet. But a bigger issue exists in this realm, and it’s having a disease called Chronic Fatigue Syndrome, a name so comparatively small and demeaning, I don’t even like to say it out loud. It’s hard to keep my own eyes from rolling. Instead I call it Shit Turd Disease, which feels no less valid or serious, and has the added bonus of a cackle at the end. Out in the world, I don’t really feel like a person who has a disease. I feel like someone with a strange secret to keep–Something to talk about in hushed, apologetic tones. Or something better not to talk about at all. Explaining and defending it takes an energy you just don’t have. So you stay quiet, but there’s a loneliness in that choice.

And there are consequences to it. For decades, the voices of the sick have been drowned out by the loud, proud professionals with strong opinions about our disease. Their ‘efforts’ are continually led by the notion that we can be cured with exercise and positive psychology. This was what the influential $8 million dollar Pace Trials set out and claimed to prove. Exciting! But upon 3rd party inspection, methodological flaws were found throughout the process, basic but crucial scientific protocol was neglected, and there were blatant conflicts of interest: Trial scientists had longstanding financial ties with the disability insurance companies who’d rather not foot the bill for those with Shit Turd Disease. And yet these trials still helped solidify the narrative that these “non-treatments” were legitimate. For more than thirty years, this idea has fueled study after study, it has shaped public opinion and policy, but it has not actually made the sick people better.

But here is where I detect the buzzing. Our attempts to improve public awareness and patient advocacy are hindered by the obvious: We’re a sick, slow-moving crew, and many of us are house or even bed bound. Fighting to be heard requires a vigor that’s diminished when you’re sick. I imagine a CFS Race for the Cure! would be more like a Saturday Night Live skit, with an embarrassing amount of joggers passing out on top of one another thirty seconds after the gun went off, half of them being hauled off in ambulances. But we’re living in the age of technology now, without the prior limits that hindered communication and networking. Now our collective voices can be heard without us leaving the house, and that matters here. The digital age provides for a new accountability and transparency where there was none before. Maybe now that professionals know their work will be seen by many sets of eyes, they’ll be less inclined to make those silly mistakes like those of the Pace trials that deeply effected the lives of millions of people. All of this helps to balance out the power. This is how we change the direction of the fruitless path we’ve been on. We have always had the right, but now we have a platform–thank you internet– where we can be seen and heard, and we have to use it.

Of course, people will stick to their guns (even in the face of gun laws they’ll do it!) And that’s OK. This isn’t actually about proving anyone wrong. No, that is the egos fight and it doesn’t belong here. This is about knowing that silence never yielded progress, and that to enable the truth we have to listen as much as we talk. It’s about ending an era that has ignored the complexity and vulnerability of what is true for the convenience and righteous facade that comes from salaried opinion. At a basic level, this is a humanitarian cause. What does it say about us that we treat the sick this way? What we do to each other we do to ourselves. So let’s do better.

Curing and treating this disease has never been an issue of capability, intelligence, resources or technology; It’s simply a matter of the right people having the committed willingness to try. If we begin there, it will be enough. But that means really beginning. It means treating this disease like an actual disease, and not some commonplace complaint or nagging ‘woman’s issue’ to be fixed with yoga. It means at least 10 times the amount of annual federal funding toward research. It means leaving the politics and scandal and doubt in the past, and surrendering the ideas that have proved ineffective. Let’s begin with purity of intent–to understand and cure it so people can get their lives back. Then I can stop writing these weird letters to my future self.

There are a lot of different ways that the next decade might play out. I could very well be cured, married with babies, living the kind of fast-paced, busy life I watch other people live. I always imagined I’d have a daughter and name her Catherine after my mom. Of course I might still be sick, an unpaid blogger still living in my parents pool house. I’ve already reconciled both possibilities. I’ll be OK. But then again, I’m not alone. This is much bigger than me.

This is millions of people at the mercy of a disease with a bad reputation and a worse name. And I’ve realized it’s useless to keep crossing my fingers about necessary change. This letter isn’t written out of hope, but as a nod to the future that I feel called to make better, starting now. It’s a reminder that change is possible and it always starts small. It’s my own refusal to stay quiet, especially on behalf of the many sick people far worse off than me, too sick to speak up. When I read this again, it shouldn’t matter whether I’m sick or cured. If I’ve done the work, I’ll be reading it from a better world; where sickness is not a secret, where we gravitate toward the truth, and where the silenced voices are finally heard. If that’s the world I’m living in, this will be the reminder that we did it, and that we’re OK. A small flick to the side of the head.

See you in ten years,

Mary
And Monty

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10 Campaign Slogans Up For Grabs in 2014

1. Rape is bad and I am against it and that is my opinion on rape.

2. I’ve never sent a dick pic in my life. Ever!

nodickpics!

3. Let’s Go Green in 2014!

You
You May Lighten Your Stance On Pot Once I Tax the Shit Out of It and Save Our Economy in About 3 Days Time.

4. Remember Books? I’M BRINGING BOOKS BACK!

5. I Love Black People!

6. Let ALL the Gays Marry Already!

Because Every American Should Have the Right to Be Miserable!
Because Every American Deserves the Right to Be Miserable If They So Choose.

7. When I Smoked In College, I Inhaled. AND I LIKED IT.

8. OUT With ObamaCare and IN With *AWESOMECARE!

9. A Gun In Every Closet!

Kill Baby Kill!
Kill Baby Kill!

10. I Believe In An America WITHOUT Yellow Starbursts. WE DESERVE BETTER!

Any interested politicians, shoot me an email. There’s no way these could fail! 

Love and Politics,

Mary

**Truthfully they’re the same thing, but it sounds a lot better doesn’t it?

My Post Election Facebook Prediction

 

 

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I’m going to briefly talk about two things I love to hate: Facebook and Politics. Bear with me.

Apparently, there’s an election going on. Like right now. You most likely knew that because you’re not an idiot. And you also probably knew that because if you’ve visited Facebook for even a millisecond in the last few months, you’ve seen it–the political outrage, the emotional pleading, angry outbursts, passionate opinions, and my favorite; quoting of the constitution. I have long thought that Facebook and politics go together about as well as pizza and peanut butter. But, we’re still figuring it out. This is the first generation of Facebookers. There’s no precedent. Which is why when Facebook opened the flood gates and allowed anyone to join, college kids ducked in horror as their parents and sometimes even grand-parents had access to a microscope highlighting all of their activity (legal and illegal) for the last year or so. They also laughed as Baby Boomers slowly learned what a poke meant and how to effectively comment on photos and walls. There’s no written etiquette for Facebook  We’re all just a bunch on neophytes figuring it out as we go and hoping not to ruin ourselves in the process. Undoubtedly, the consequences of Facebook activity can be huge, regardless of their intent. There have school expulsions, job firings, missed job opportunities, and countless breakups over this enigmatic social network. But hey, there are pros too. Keeping up with family members and long-lost friends, stalking your ex, knowing what your neighbor from grade school ate for breakfast this morning and that your high school boyfriend and his girlfriend are expecting a baby boy! But I’m getting off topic. There is an election going on. And if you spend any time on Facebook right now, you cannot escape that fact, opinions about that fact, and the ensuing written diatribes about that fact.

Sadly, I admit I have engaged in political debates on Facebook. They were miserable, dirty, and useless. No one walked away with their minds changed or cleared or any more informed than when they began. To be fair, verbal arguments can sometimes be just as messy and ineffective. But a verbal argument seems more tangible and more accountable. It’s much easier to write nasty things than to say it to someones face. There isn’t much accountability on the internet. Facebookers and bloggers have a lot power but not necessarily a lot of accountability.  It’s easy to type what you feel many times anonymously, without being liable for what you submit. On the Internet, we’re all just a bunch of small boxes with a face (or sometimes a picture of a car or a sonogram) and a name, but we seem to lose a large part of our humanness.

As miserable as Facebook political warfare is, we seem to be addicted to it. It’s hard to keep your mouth shut, (or your fingers idle) when you see someone post something you deem ridiculous. And truthfully, Facebook is where a lot of people make their voices heard. So it makes sense that it is on this platform where people express themselves politically. I don’t wonder why politics comes out on Facebook. It’s clear. I only wonder if it’s ever meaningful. It reminds me of a bumper sticker. It’s a tiny little snapshop of your views, but rarely does it encourage an intelligent dialogue or seem to persuade the other side. For all the engaging and speculating on Facebook I’ve done, I have never once witnessed a meaningful political conversation. Inevitably, someone will type something like “Hey screw you you dirty liberal!” or “You conservatives are a bunch of assclowns!” The people who agree with you are already convinced, and the people who don’t will tell you to go Eff yourself.  And then most likely send you a FB invite to their birthday party.

All that being said, my prediction is that we’ll see a large backlash on Facebook  November 7th, regardless of who wins the 2012 presidential election. (Duh) Democrats and Republicans alike are enthused, passionate, and each seem to use a disproportionate amount of explanation points. Here is my prediction:

IF OBAMA WINS:
(Warning of the apocalypse)

Everyone ready for the Socialist States of America?

God is good. God is great. Romney lost. We’ll suffer our fate!

Awesome! Another four more years of bullshit! Can’t wait!!!!

I’m moving to Canada. Eff you America!

Four more years of assclowns to run the White House. GREAT!

IF ROMNEY WINS:
(Emotional Depression Sweeps the Nation)

It’s a sad day for America. I really thought we had this one.

Wahhh. How will I afford my birth control?!?!

God is good. God is great. Obama lost. I wanna shoot myself in the head.

I can’t believe I won’t get healthcare and I’ll be in a binder!

Woah, Romney won. Does anyone wanna get frozen yogurt?

When you sign up for Facebook, you sign up to see and hear a lot of things about about your Facebook friends, which is mostly everyone you have ever known. Sometimes you’ll like it and sometimes you won’t. I always wonder how Facebook will evolve and how its users will change. Regardless of who wins, the world will keep on spinning, (according to most) and Facebook will keep on status-ing all over the place. Whether you like what you see or not, it is great to live in a country where you can say it all. But just because you can, doesn’t mean you should. Most of my recent Facebook activity that deals with the election is linked to The Onion–a satirical newspaper. Because I don’t find that political views on Facebook do very much except attract those who disagree. Which is fine. Maybe that’s even the point. Ranting and bickering can be fun, I guess. But from my seat, it never seems to goes well or end well. If we are to examine our intent, what is it exactly? To change minds? To be heard? To inform? I wonder if Facebook is really the place to do it. I think there may actually be a place for politics on Facebook, somewhere. I just don’t think we’ve found it yet. It is however, the best place for pictures of cats and babies and suggestions for cold remedies. No question.

Maybe it won’t always be that way. Like people, Facebook has continued to grow and change throughout the years. Most would probably not even recognize the user interface of Facebook 1.0. And it will be interesting to see what it will look like in the 2016 election and how people will interact then. My prediction: Still a lot of cats. Still a lot of political warfare.

The world spins on.

Health, Happiness, Politics.