SolveMECFS – FibroM.E.-Awesome

Oh, and two new favorite songs. At the bottom ——>>>>

This morning I was lucky to wake up to one of my favorite scenes: a thin blanket of white glistening atop every surface as far as I could see. Smoky, colorless pearls of clouds covered the sky, simulating life within a snow globe. No one had shaken it yet. A pristine world shimmered untouched, au naturale. The flakes were still falling, and as the morning went on they would oscillate from quarter-sized to barely visible. I love snow so much. And miss it! We barely received any this year, so this felt like a nice treat, despite it hardly reaching an inch. It’d be gone by late afternoon, but still it carried with it the sentiment of an anonymous gift.

I drank my coffee and watched as River hippity hopped around on this fluffy new texture, wholly excited simply by the feeling of something new under her feet. I imagine most dogs are this way, and the ones who aren’t are usually cats. Most people around here would say “It’s about time!” as it’s been an incredibly dry and mild winter Our first *real* snow arriving February 20th!? Everything in due time, I suppose. Else we are slowly succumbing to the unnatural phenomenon of everything warming until none of this is habitable anymore. By that time maybe, Mars will step in. If not, we self destruct, which Tolle describes as “not really a problem at all.” We’re all going to go, one way or another.

I am weaker than I’d like to be—which is not weak at all, of course. Even though I had inched my way to improvement over the last week, for some reason I woke up on Tuesday to the physical news that my muscles had turned to lead over night. Life is full of such creative surprises! My upper body and arms in particular strain to do very basic things, like brush my teeth—and that’s a great way to feel even more pathetic than you look. But I know the drill: no matter how many tasks remain written, undone, on the list that I’d like to start and even, gasp, finish in the near future, will all just have to wait. And I’ll just have to wait until my strength returns, which seems to happen inevitably in time, for no good reason at all— Just the same as how it arrived.

The kind part of laundry, dishes, the spice cabinet I’ve really been wanting to organize, is that they’re all very patient, so lucky me! In reality, when I can’t do these tasks it means someone else will have to, and I can’t tell you how bothersome that is. Not bothersome, but something more adjacent to guilt. I want to be a clean and organized and helpful person, and nothing disrupts that possibility more than a body reliable purely for its unreliability. Infuriating! But those are the rules dear. You can rest, waiting, either angry or surrendered; *that* choice is always mine.

The only real way to *wait* for some level of wellness to return with any sanity is to embrace to the present. Continually try to re-renter and stay in the now, reminding myself everything is actually fine. I *wish* it were different, yes. But it’s not life and death here. It’s mostly tolerance, humility, and patience. I have to remember (again and again on days like this) that all things of priority are operating, and all secondary things will be tended to when I’m able. The pile of laundry waiting to be folded has turned into a sculpture like heap in the hallway. Interesting color combinations and whatnot. More life surprises!

This thing called surrender comes highly into play throughout times like this, but it must always be discerned and separated from the idea of giving up. Yes, the two are mutually exclusive,as one implies befriending the present moment and accepting what’s possible and not; reality as is. The other has to do more solely with will power and throwing in the towel. As anyone and everyone with ME/CFS knows, if you could will-power your way out of this thing, we’d all be healthy as an ox. As Oxen? Who decided Oxen were the emblem of health anyway? Wait, who cares.

Despite the inch of snow disappearing by evening, remnants will remain. In the shady areas small patches it will last for a week. And in the yards where children play, sad looking snowmen will slowly shrink and deform until just two twigs-once-appendages lie in the wreckage pile. Perhaps with a rotting carrot somewhere in the mix. But for now it can simply be appreciated and enjoyed. One of my true great pleasures in life is experiencing the silence of snow, falling or freshly fallen. If you’ve ever stood in freshly fallen snow, or caught it still coming down, you know exactly the tenure of silence it conveys. It’s a sacredness proximal to watching the sun rise or set, or looking out into the oceans without a spec of land in site, or into the depths of canyons thousands of feet deep.

It offers to me the feeling of how much bigger than me the world is- how the earth inhabits a living autonomy, apart from the humans who occupy it. And yet, I have to believe we’re connected on some unseeable, unknowable field. I feel small in a good way—protected, overseen. A feeling of trust emerges because nature and all its phenomena far surpass me and my little life. It knows exactly what it’s doing. Which is reassuring personally, because I certainly do not.

(Here are some polaroids I took across the day. Polaroids: Because there’s just not enough damn photos out there.

Snow gives good reason to pause and reflect. Not to mention it makes for nice scenery when you’re sick and essentially useless. I would surmise too few of us really stop and take it all in as much as we ought to. Easy to get lost in the frustration of scraping down your car windshield or having to shovel the driveway. For me it’s the audible nature of it, both the particular sounds it makes and the muteness it creates. If you close your eyes, nearly everyone can hear the crackle and crunch of footsteps in the snow. But you can also hear the insulated silence, the voices and sounds muffled by the accumulation. As it turns out, there’s a scientific reason why snow leaves such a pervasive, distinct quiet: Each snowflake acts as its own tiny sponge, as does the amassed snow on the ground. In this capacity, the snow is actually absorbing sound, leaving a sanctified hush in the place of the typical, unbuffered world and its noise. Is nature neat or what?! I DO declare.

(Two Weeks Later)

The snow is long gone, the birds are chirping, and it’s in the upper 60’s. February is over! I was starting to doubt that might never happen and I may personally enter a ground Hogs Day situation. Anyway, this weather is a tease. We’ll get hit with a few more cold snaps before the warmth really settles in. Guess what? I’m still weak. ME/CFS is a resilient disease. Rain/snow/or shine: It can and will thrive through anything! Oh well, I had a fun and more energetic weekend, which is probably why I’m paying a physical price now. So it’s back to to-do lists undone, River ansy for her walk, and all the sounds of nature crystallized and clear, animating another day of rest.

I have learned to do this, and work constantly not to forget. I’ve gotten pretty good at doing very, very little. Can you imagine that being anything to be proud of? Ridiculous. And normally, no. But for the hand millions of people and I have been dealt, it’s a teeny, tiny victory. With patience, all of what we must do, all of nature, and all we wish to achieve will unfold as time and space allow. In the meantime, we have to continue to find and adapt to who we are, no matter what transpires on the outside of us all.

Health, Happiness, Unfolding

P.S. Listen to these two songs: They’re my faves right now.

I remember a conversation I had with my mom, roughly six years ago. It was not long after the Great Crash of 2011. I was slumped at a bar stool in my parents kitchen. I’d been crashed a while and not doing very well, physically or mentally. It was a grey, wet Winter, perfectly depressing, and I remember looking out our office window and thinking “I feel exactly like the weather.” I’d been caged up too long, among other side effects. Everything was a reminder of what I’d lost, what I believed the disease took. I knew I should be grateful I had somewhere to go, and I had people to take care of me at all. Not everyone has that, no doubt I was lucky. But I didn’t want help. That kind of surrender is never really easy, but when you’re in need, it’s really the only way to go. Resistance just ends up making you mean to the people who are trying to help you.

My mom was folding laundry, explaining to me the details of a promising new study going on, something involving the gut; I wouldn’t know because I was barely listening. She told me that I should follow the research and recommended I read a blog called Phoenix Rising, a veritable A-Z of everything MECFS. It might help me feel better if I at least understood more about the disease, on many levels.

But I could almost feel a visceral resistance to this idea. Ironically, I didn’t like reading books or blogs or stories about this disease. They only reinforced what I already knew, and they all ended the same—no one got better. I can remember holding back tears, angry tears I guess, that I didn’t want to read anything about this disease again unless it was an article touting that they found a cure.

They?

(Insert really awkward DC photo)

6 years later, I found myself frozen in the doorway of room 129 in the Rayburn Building in Washington D.C. I was attending an event called “The Storm on Washington“–an event I felt a strong pull toward for a few months.

This room would be our “MECFS Command Center” throughout the long day–a place to commune in between meetings and rest, eat, talk, or collapse. (Really, there were beds) I hadn’t even entered and already I could feel the warmth of the room from so many bodies insides, at least 10 degrees hotter than the icy hallway. It was 9 am and a low, indecipherable murmur pervaded the room from multiple conversations–introductions and instructions and attempts to achieve order among a really huge, logistical effort. I stood there like a lost puppy, watching the quiet chaos unfold. I knew not one person. What the hell am I doing here?

I was doing what I’d done many times before–jumping in without a clue. But I was among smart and determined people. The principal reason for being there was pretty easy anyway–to share my story, to try and humanize this disease and convey the experience with decision-makers. I’d told my story plenty of times before, I’d become pretty practiced. That day 52 advocates would meet with over 70 congressional offices and representatives. A success in just making that happen, in my book. (Thank you MEAction and SolveMECFS!)

It feels like there have been many beginnings to my entrance into the advocacy world. A place I never thought I’d enter, for reasons I’m still unsure of now. Bitterness maybe. Fear probably. I still feel like I’m hardly making a dent, but I am trying, finally. Bitterness, self-pity, doubt–all of those feelings depleted me, when I was already emptied of energy. They still come around. But finding small glimmers of faith that you might be where you’re supposed to be, even if the circumstances are crap, feel energizing. Any time I’ve come across hope, it’s like a flashlight turning on in a cave. It’s somehow always led me out, even if very slowly. But it usually means some kind of surrender; giving it a chance. I don’t write this as though finding purpose in a painful situation is easy. It’s not. Particularly chronic illness, which is long-term. It took a long time to figure out that I could still even have one, as I was. I still lose my way from time to time, and wait for a flashlight to flick on that I can follow.

I didn’t know when I published the petition last year that I was entering the world of they. Nor did I really know what I was doing then either, surprise surprise. I was following intuition and telling the truth, that’s it. But the same energy that brought me to DC encouraged me to write it. Call it the universe, or God, the collective unconscious, or soul–something outside the 5 senses was helping me out. I just sort of followed the scent.

Admittedly, I’m bad at campaigning. Gary Zukav says that when our soul and our intentions are lined up, the universe backs us in big ways. Maybe that’s what happened when it gained something like 20,000 signatures in a day. I was also lucky that my sister does know how to campaign, and my enormous family, circle of friends and other advocacy groups pitched in, all in huge ways, and now that petition has 42,000 signatures. When I wrote it I had my fingers crossed it would reach 1000.

Did 42,000 signatures fix the problem? No. But it did something else important. It connected me to so many people through the feedback page, where people can leave comments. People shared their personal stories, their loved ones stories, gratitude and words of encouragement. Total strangers said they’d pray for this effort. Every time I read one of those comments it made me want to work harder. It showed me how far-reaching and devastating this disease can be.

I thought I had it bad? Talk about small potatoes. The petition did two things: 1. Showed me I could have it a lot worse, so easy on the self-pity, chief. 2. Stopped me from looking the other direction. Coincidentally, that’s exactly what we’re asking the government to stop doing now.

It was the petition that led me to connecting with an MECFS advocate online, who knew the D.C. Aide for Bill Cassidy, a Louisiana State Senator. I contacted him, which led me to a meeting with Cassidy’s number 2 guy and the Louisiana State Director, Brian McNabb. Meeting with McNabb for 2.5 hours, discussing everything MECFS was an incredible experience. Did it change anything? Maybe not. But it encouraged me big time. And in the end it scored me a meeting with Senator Cassidy. McNabb warned, it would be in between two events so it’d have to be quick, maybe 5 minutes. I said I’d take it.

So, I met Bill Cassidy in a parking lot on his walk to his car with a group of staffers surrounding us.

I had to talk fast as he was late to his next meeting and his assistant kept saying “Sir, you’re very late, we need to go.” I spat all the vital things out as fast as I could. Knowing I didn’t have long, I left him with a folder where I’d printed out 25 pages of peoples comments and stories that they’s shared on the petition page. Did he read them? I’ll never know. But he looked me in the eye, he shook my hand, and he told me out loud “I really care about this issue.” I told him thank you, I couldn’t express how much we needed people to care. He said he wanted to continue the conversation when he had more time. We were being herded like cattle to his waiting car. A cynic might say he probably says that to everyone, but it didn’t matter. Here was one more person who had now at least heard of this disease and the issues, and also had some decision making power. His assistant who had hurried us both while listening to our conversation, started to get in her car, but stopped, got out, and gave me a hug first. Good stuff.

Later, my uncle who is a mutual friend of Representative Steve Scalise, had seen my “Chronic Fatigue Syndrome Song” on the petition page–a mostly embarrassing but celebratory song I wrote after hitting 40,000 signatures. He thought it was pretty funny, and asked if I was interested in a sit down

with Steve Scalise, a Louisiana Representative and the Majority Whip. Umm, yes. So not long ago, my Uncle Paul and political mentor, Rep Steve Scalise and I all sat down for a while to talk MECFS. He was another kind and engaged listener. He asked good questions and was generous with his time. I told him my story, I attempted to tell the story of MECFS among my hiccuping brain, and Paul helped me convey some things when my words turned to spaghetti mid-sentence.

Would this meeting solve it? No, but it was one more person who now at least knew of the disease. Someone with decision making power. Count it.

It was exactly one week after that meeting that Scalise and others were shot in a baseball field in the middle of the morning. What?! I am as clumsy with thoughts as I am words when it comes to events like that. It’s so hard to understand, it happens way too often, and I still feel far away from it somehow. As cliche as is, I’m praying and sending healthy thoughts his direction and the others injured that day. How this all plays out in history, we can’t know yet. Maybe someone is reading this in the year 2045, and it will all make sense.

Why am I writing this now? Because I need the reminder, which is very obvious but I want in words anyway, which is just to try. A reminder of how much happier I feel when I go for it, even when I don’t know what I’m doing. A reminder that writing 15 versions of this one stupid blog post over the course of a month is mostly a waste of time. Just jump in. It’s not always complicated. It will never be perfect, but it’s almost irresponsible not to try at this point, and to keep trying, over and over.

I continue to walk the thin line between fighting for a cause I whole-heartedly believe in, and surrendering to circumstance and the things I can’t control. I’m always learning , that a sick life can be a good life too–and I hope can still become a person I can say I’m proud of in the end. It’s easy to cross over too far one way or another, but if I stop trying, I’m a gonner. Sometimes I fail. There are many (funny) stories where I blow it. But it feels so much better to get out there and blow it, then to act like a bitter teenager on the sidelines, thinking pain was never a part of the deal. This is the reminder; try. You always feel better when you do, so do.

Health, Happiness, Tryin