Sick, Snow, Sounds, Spring

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’ll Take ‘New Years Eve From Bed’ for $1000, Alex

Sometimes life is so tragically hilarious that you could laugh or you could cry, but when you’ve shed enough tears to fill a pool, laughter is nearly the preferable way to go. If you can swing it.

I’m laughing because it’s New Years Eve, I’m in 5 day old pajamas and have only left the house by being driven by my parents to urgent care over the weekend and for x-rays, blood work and an ultra sound at the clinic today. Now I’m at home, listening to the coonass neighbors set off what sound like homemade bombs, Monty is never more than a foot away from me as he’s afraid of what I can only assume he must assume are the end times out there…

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This is basically the funniest picture of Monty I’ve ever seen. It’s like he’s trying to play it cool like he’s not scared, but it’s all gone horribly wrong 

OK so then on top of this somewhat sad, funny setup, there I was watching The Antique Roadshow with my parents. Marc was already half-asleep in his chair. Well, I’m 34, I’m going to kiss Monty for NYE, and it’s anyones guess how late I’ll stay up. Then around 10ish my mom told me she was exhausted and going to bed. I’m at home now, attempting to write, which I’m deathly afraid I’ve forgotten how to do so excuse the caca that may emerge through the next few posts while Stella gets her groove back. The point is, I’m 34 and peeing every 20 minutes and I doubt I’ll make it to midnight. Unknown  Now that’s comedy! At least we’re not watching My 600 Pound Life…that show can really get you down.

Anyway, I wonder how many other asses were kicked besides mine due to the intrinsic chaos attached to the Holidays. Because you can considered mine booted. Crashed and burned. And it’s raining outside! Some easy reasons to be blue, but rain is actually a huge part of why I love living in the south. My dad always said rain was a sign of balance–and on every occasion some small shower falls from the sky and comforts us all in some way that he’s still there…still looking out for things, even when they’re a catastrophe. Maybe this year it means the scales will tip a little further in the direction of help for the MECFS demographic–help even the ‘playing field’ when it comes to our efforts for change. Maybe I’m just a hopeless romantic. But hey, he’s helped out before.

The biggest bummer besides my body failing is that cognitively it’s been spaghetti brain all over the place a lot of this year. Especially the last 6 months. And it seems like the brain needs rest the same way a physical crash requires one. But writing is my outlet. I feel angst when I don’t write here. Doing it forces me to remember, be patient and grateful and most of all, to help restore my hope. It’s aways been something I can do despite being sick. So to not feel like I can creates a void among voids I’m already fighting. It’s hard to know when to just stop and take a break, or when to just keep writing through it, even when it seems to kind of…suck.

I write through a lot of it and post very little. I tell myself I’ll stop doing that because that fear of bad writing can really tailspin into no writing, and that’s the worst you can do. Inspiration can hit you in the middle of doing what feels like crappy, worthless work. And it seems less likely to be struck by anything meaningful when you’ve turned your back on trying because you’re afraid it will be bad. Sometimes it will be…I think you just write through it. Or you become a lowly loser blogger whose only readers consist of your sister and your aunt Amy. They were the first followers of this blog :)

Writing and thinking and speaking coherently have become so much harder this year. Half of it do to the meds I have to take to control the RLS and skin crawling, where life is just not possible without the treatment. When I picture my brain I see a six lane highway with bumper to bumper traffic that spans for miles with no way to exit besides getting out and walking. It’s so cluttered up there, forgetful and all out-of-order. Luckily it is the pace of writing, its’ patient ability to wait for me to think of words, that allows me to continue. Unluckily, it takes me so much longer to write than before, and by the end I can’t gouge if it makes any sense so I skip it and say I’ll come back to post later. Guess who doesn’t post later? So there’s about six….thousand… of those suckers just open on my computer, waiting to go somewhere. I just need to stop being a pansy and post. What’s with this damned hesitation? Good grief.

It hit me this year how hard it is to be around people who aren’t sick simply because it brought me up close to what a typical life looks like. I tend to forget how dysfunctional mine is. I watched as they would make breakfast and listen to loud music in the morning and carry babies and take showers like it was nothing. Of course it’s nothing. That’s what a healthy life permits you, and so it can be a bitter reminder of the things that are marathons for you, when you see just how easy they could be thoughtless tasks. But this is why sickness is always encouraging consciousness if you’re to live with it and find peace at the same time.

If you kept a list of “can no longer do’s’, you’d run out of paper and possibly lose your mind. In day-to-day life, you have this *creative challenge* we’ll call it, to just hang tightly on to what you can do, what you have, and squeeze the hell out of that lemon for all the juice inside it. Years ago I had to learn to start counting up, not down, in my everyday life in order to keep going. To find momentum, purpose, laughter, creativity–all that cheesy crap they write on picture frames at TJ Maxx–you’ve got to find your small pieces of joy and feed them until they start to return the favor tenfold.

It would be easy enough to be depressed on a day like today. It’s New Years Eve, and I know my friends are picking out fancy outfits for the night. They’ll drink and dance and party. Since we spent most of today at the doctor getting x-rays and ultra sounds and blood work after a bladder infection seemed to move to my kidneys, I think it’s safe to say there’s no partying for my NYE. But that’s OK. I mean it sucks, it’s OK to say it sucks, but it’s OK too. I mean here I am talking about my bladder to strangers on the internet! Should I get into my bowels? I won’t, they’re fine.

I really wanted to write tonight because I was thinking of all the people in similar situations as me–particularly all the sickley’s out there. I just wanted them to know that if you’re feeling low, well 1, that’s understandable. But 2. try hard to remember you’re not alone in all this, even if you’re by yourself. I know it’s difficult  to take that seriously. But I also know how isolated it can feel when you turn on the TV and see two million people partying in Time Square while your miles away in PJ’s, in bed, etc. I hope you remember how many others of us there are, going through the same or similar experience, missing out on overhyped parties and whatever else is happening out there.

We’re still connected to each other in some way, and I don’t know how to convey it exactly in a way that really eases the loneliness that nights like these tend to reinforce–but the numbers don’t lie. There are millions of us, all in similar boats. And we don’t have to know each other deeply to know we’re out here. I’m one right here!

Let’s also not forget, we tend to imagine these elaborate parties with tigers on leashes and super models serving champagne on a rooftop with views of NYC, but they’re never as good in reality as they are in our minds. Tonight is just a change of numbers. Tomorrow will be back to normal.

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The difference is that it’s 2019, and I plan on working so hard and creatively with my efforts in getting the NIH to see what they don’t appear capable of seeing. -We’ve already made a breakthrough, (more on that next time) and established an important connection. Was their response satisfactory? Haha, NO. Not by a long shot. But this was just one of the first steps, and there will be many more to come.

I would ask anyone at midnight to just stop and focus their attention for even a few seconds on major change for MECFS. Think about the things you want to happen, even if it seems obvious, and send it out into the world. Maybe the desperate changes we need will converge somewhere in the universe, meet over some remote place above the Atlantic Ocean and help make things work in our favor. I believe we can do what we’ve set out for. We just have to continue to help each other, support and carry one another through when the work is too heavy, and never lose hope that we will get through to the right people and that the work we’re doing is crucial.  We will attain the change we need, I know it. At midnight that’s what I’ll be thinking of, and I hope you’ll join me.

I truly hope everyone had a happy holiday, sick, well, or in-between. I’ll see you tonight in the stars somewhere. I wish you all the best, and if you’re like me and you’re going to kiss your dog at midnight, maybe also make your wish, kiss your fingertips, and blow it out into the cosmos. I believe in the power of energy if nothing else. Whatever you do, don’t lose hope, as impossible as that can feel. Try to imagine how amazing it will feel when our efforts come to fruition. The advocacy world has made some major progress this year. Now, we just need to get the government to follow our lead :) easy peasy! I think 2019 will have much bigger things to come, so hang in there with me. I need ya.

Health, Happiness and HapPEE New Years!

**I promise this is the last blog that’s so long. I’m fixing it, ok? My brain is thinking in non-sequiturs. I’ll fix it.