Viral load: full

Realized today I’ve reached maximum Corona saturation. Which means I really topped out weeks ago, but seeing as I consume information and oxygen interchangeably, I was not careful to notice when too much was too much.

They say your gut is your “second brain,” though, so after the sixth(?) day of this IBS runs, (haha! oh how we laugh!), I had to wonder what was up. (Also, Corona panickers, stop fucking hoarding toilet paper, some of us need it right now.)

But considering that since the beginning, I have not actively sought out ANY information on the shit besides the breakdown on the ages catching it and the mortality rates, I’ve still been absolutely bombarded with everything I didn’t want to know about it at every fucking turn in at least two languages on every possible platform and outlet. For months.

And today, it was Too Fucking Much.

The Norms have started panicking in earnest and I just do not have the energy left to carry one drop of water for them or their fears.

See, I don’t like to brag, but I don’t ever have the privilege of walking through the world feeling even modestly invincible — not against health systems which are not set up for patients like me, with chronic and complex needs, during the BEST of times; not against economic systems that push those health systems farther out of reach during the BEST of times; and certainly not against microscopic invaders lurking anywhere/everywhere, ready to wreak havoc in my immuno-modulated body.

Maybe it’s maybelline, or maybe it’s the lifelong complex trauma history, chronic illnesses, a good eye for patterns, chronic pain, a chemo-customized immune system, being a long way from home, going through menopause and puberty at the same time…

Maybe it’s all of it, or none of it.

But from the first mention of this novel threat (which came in addition to the annual seasonal influenza threat, against which I cannot be effectively vaccinated), the question was never really

“oh no, what if I get Corona?” or “what can I do to keep from getting Corona?”

the question was always just

“How long until I get this?” and “Will this be one I can get better from, or the one that gets me?”

I don’t have the luxury of panicking.

Anxiety is the fear of fear, and panic is anxiety turned up to 11. You don’t panic in front of a firing squad; the inevitability precludes it. You might panic when a plane experiences turbulence and bounces around, but have you ever read survivor reports about what happens when one really crashes? It’s often eerily quiet, not screamy like in the movies, because once the uncertainty vanishes, so does a certain degree of the anxiety/panic.

And it’s not just me feeling stuck between damned and doomed. I WISH it were just me, so I could take my little whiny worry and wrap it up and bury it in a hole somewhere and sit on it until this thing passes, but there are so many others in the same or worse situation. Nicer people! People with jobs, and pretty smiles, and polite children, and bright futures! People who serve their communities, in spite of pain and limitations! People who are basically the polar opposite of me in every way, except they are also more likely to catch this fucking virus for no fair reason, and it could very well kill them.

So many valuable, vulnerable people out there who, in addition to all their other lacks, also lack the luxury of panic about this new threat. They can only add it to the stack of all the old threats — maybe build a cabin one day? Or at least a nice bonfire? I’lm brng mrfmrllws, I say through a mouthful of marshmallows.

In the meantime, I’ve muted my local grouptexts #indefinitely. I’m spending more time drinking (I mean, if these are the last days, I want them to be good ones), starting now. Well, 30 minutes ago, here’s mud in your eye.

I think self-congratulatory”social media fasts” are silly, but I’ll probably log in less for a bit — those who know me IRL are welcome to reach out directly in the meantime. I’m trying to avoid the public firehose, not real people who really matter.

18 Aug 2019, CVS pharmacy, Georgia, USA. But yeah, TOTALLY ready for this threat.

WYG 1: The Person I Used to Be

I used to be a paper doll with a relatively-rockin’ wardrobe of money, title, privilege. A two-dimensional darling of modest means but sky-high potential, and this was America at the turn of the 21st century, so how bad could life be, really?

I used to give more than I took. I used to be reliable: making commitments and keeping them. (Why didn’t life do the same for me?)

I used to agonize over what I would do with my life, with the wispy expectation that with enough strength inventories and navel gazing, I’d eventually figure it out, live it out, make good on some time-debt I inherited.

I used to know how the world worked. I used to know how to get my way and have people thank me for it. I used to have conversations and never lose the next word, much less the entire thread evaporated. I used to be able to do 5 things at once.

I used to pee and poop when I wanted to, in bathrooms, in private. I used to be able to drive at night, at dusk and dawn and every hour between. I used to be depressed sometimes, but there was always the going to be time to grow out of it, this phase, this rough patch, this one-off blue mood.

I used to want to save the world. I used to think that the hardest part of my life was past and that I had the rest of my life to keep making it better. I used to be able to feel touch and temperature and pleasure and not want to crawl out my skin.

I used to be in sync with the rhythms of the world – wake and work and play and sleep, repeat. I used to have a job to go to, a week that made a weekend make sense. I used to be proud of myself sometimes.

I used to read books. No — I used to inhale books, devour books, put a new book  on like a sexy new dress and spin around and shimmy. Then I went blind and got mostly unblind and had kids. Now I buy books and stack them and give up and give them away unread.

I used to be independent, not a joiner. I used to feel equal to my wife, or near enough – a star fit to hang near her moon. Not this frozen dwarf planet orbiting by habit, dumbly waiting for an international body of scientists to demote me further, any year now who knows, it’s not up to me.

I am medical records number 56-1802,
the patient in exam room 3,
claim number 45688-48375-00092-1,
the refill request on line 2,
dependent of the primary insurance holder. I am
“ma’am, are you okay?”
“ma’am, do you need help?”

Becoming a mom has not helped, not that I expected it to, but maybe I didn’t expect it to hurt so much. How could I possibly compete with the piss and vinegar of somebody 1/35th my age, even 1/17th, 1/12th? They arrived programmed to learn at such a breathtaking pace, to hoard skills and knowledge like so many goldfish crackers. They are still on that upward trajectory with a hazy ending so inexpertly timed that we can pretend it doesn’t even exist.

I, on the other hand, am perversely devolving, deviating from that upward arc of exploration and acquisition. I am losing, always losing, with no hope of getting back, as the world and my people in it keep moving on, up, out, and around.

As they should! As I should.

I used to be a bad imitation of myself. Now I’m a bad imitation of somebody else. Not well enough to be well, not sick enough to die. Disabled, but not “wheelchair bound.” Disabled, but not born that way. Not appropriately grateful for whatever it is I’ve got left, not happy to have been conscripted in the fight of my life.

Not getting better has been the biggest failure of my life, tied maybe with not being able to quit caring about the failing – six of one. I can’t get out from under the disappointment, steeped in shame, the failure of imagination and neurons and pelvic floor.

But nearly ten years in, it’s obvious that the horse is out of the barn and I’d just as soon burn it down, that piece of shit, falling-down, ramshackle deathtrap of a barn. At least then the horse will have to find a better place to live.

Who is the horse? Who is the barn? If I’m so smart, why can’t I figure this out?

Angels Unawares

I spent the morning doing the math. In sum, i spend about 80% of my time wishing I weren’t wishing I were dead. As you can imagine, one doesn’t get much concrete proof of productivity from such endeavors, despite the long hours and dedicated vision.

It just doesn’t translate. It’s hard to sell at cocktail parties. It’s easy to feel invisible.

On a Monday morning when everybody woke up crying, when I’m loading the boys into back into the car after a 1.5-hour driving nap and a trip to Aldi, in the middle of a scorching grocery parking lot on a 90º day, and a lady twice my age offers to take my shopping cart back, and I decline, since I haven’t even been able to unload the bags out yet (babies first, with air conditioning, always), and she says “Don’t worry, I’ll wait,” and she means it.

And when I say “thank you so much, that’s so kind of you to do,” and she says, “You’re doing such a great job. I’m just amazed you’re getting out to the grocery store. It’s the hardest job in the world. You do what you have to do, right? You’re such a good mom.”

That’s when I cry. Instant, ugly cry. And throw two giant bags of groceries in the back of the van, and push my cart into hers. She wouldn’t even keep my quarter. She gave me a hug.

After I blew my nose, and changed the other baby’s diaper, and put him in the carseat, and looked up to thank her again, she and her big white SUV were gone.

She might be a grandma in a handicap parking space, but man, she travels light and fast.

This is not the first time a random-act-of-kindness-lady has made me cry in a parking lot.

Not even the first time in the last 6 months.

On the one hand, that’s just fucking mortifying. But on the other hand, I got a grandma hug out of the deal, and something else to think about for a while.

Moms are legion, and they are awesome. I can’t wait to get my shit together enough to represent.

2 large shopping bags full of Aldi brand products
concrete proof of productivity

It’s no wonder mothers are tired

“That which is to give light must endure burning.” — Viktor Frankl

“That which is to give life must endure burning out.” — me

As I’ve repeatedly tried to explain to my wife, I’m tired — but not the kind that a good night’s sleep would fix right up.

For starters, I’ve had MS for 8 years now. I’m no stranger to fatigue. 136_image

There’s the muscle fatigue, where repeated movements make me weaker, not stronger. There’s also the overall sense of waking up drained of all energy, of living on a planet with 10x the gravity of earth, best described as lassitude.

And of course there’s the fatigue of “managing” a chronic illness — which really means running herd on your medical team, your insurance company, emerging science, pharmaceutical advances, public policy, fundraising, and the shreds of your family and social and sex lives — day after day after goddamn day, forever and ever, amen.

So me and tired go way back, and I work hard every day to fight it back and haul my aching ass off the couch, to keep participating in life.

But a couple of years ago, I participated in MAKING LIFE, and discovered a whole slew of new ways to be tired.Twin ultrasound at six weeks gestation

We live in a society that loooves to tell women how to live; indeed, entire fetishistic industries and economies depend on it [and should die quick and painful deaths, but that’s another post for another day].

So when a woman becomes pregnant? Those omnipresent, authoritative, prescriptive voices double down, coming out of the woodwork to tell her the best, or at least the newest, ways to “manage” a pregnancy.

Do this, don’t do that! Eat this, don’t eat that! This is how you should sleep, dress, shop, and clean and work and screw. Or not – maybe it’s this other way! Nobody’s ever tested this advice! Do as we say!

A week after our first positive pregnancy test, Jezebel ran “How to Have the Best Pregnancy Ever,” a masterpiece that neatly sums up the conflicting cacophony. Dare anyone to read it and not feel like you need a nap afterward. Or a stiff drink, but that would kill your baby, unless it’s actually totally fine…

Now, read it again, with the sober understanding that not 1, not 2, but 3 lives hang in the balance of your every decision. The clock is ticking. Cells are dividing. Tiny organs are forming (or not! dear god). You’ve never done this before. You won’t get any do-overs. It’s all on you. I bet now you feel like you need a nap yet can never sleep again, lest you fall down on this all-important job that everybody but you seems to know how to do.

If you’re newly pregnant, this is the time to curl into the fetal position — while you still can.

In fields like medicine, the defense against this din is called alert fatigue. When providers receive too many computerized alerts (about drug interactions, say), or conflicting alerts that don’t take into account the specific nuances and contexts of individualized patient care, the providers start tuning out the alerts. They become indifferent, override it, close the window, click the X.

And they are likely to start ignoring all alerts, even ones that might be helpful or lifesaving.

Wheat and chaff. Signal and noise. Baby and bathwater.

Day after day after day.

It’s no wonder mothers are tired.

Tune in next week eventually for a look at the types of fatigue that show up once the babies are actually born! That’s right — there’s more!

My favorite health book? (NHBPM 13)

I think it’s patently unfair to ask a reader what their favorite book is. It’s like saying, “Which finger is your favorite?” or “Which hair on your head is the very best one?”

You’re a different person with each book you read — and each time you read the same book — and there are simply too many books, too many possibilities, too many contexts. Choosing a favorite is like comparing apples to orangutans.

Image from appheadlines.com

The corollary is that I’m suspicious of anyone with a ready answer to the favorite book question. Partly because having an answer implies that the question is valid, and I’ve already posited it is not.

But I also have a shameful snobby reaction, where I can’t help but assume that anyone with a standout favorite book probably just hasn’t read very many books. De gustibus non est disputandum, of course, and I would never expect anyone to like the same books I do, or vice versa, or even to like books at all. But it seems ingenuous to have, or to be willing to share, a favorite book.

Have I set the stage to prove how worldly and snobby and literate and assy I am?

Good.

Now I can effuse about my favorite health book, because it is awesome!

My all-time favorite book for people with chronic illness is The Art of Getting Well by David Spero, RN.

But wait. Doesn’t the “chronic” in “chronic illness” mean you’ll never get well?

Well, yeah. And no.

Feeling suddenly less certain? A little confused? Perfect! That shifting you feel under your feet is the fertile ground of your new life.

The short answer: wellness is a state of mind, and the way to reach that state is through self-care.

Self-care is a foreign, revolutionary concept for most people, and for women especially. But there’s a reason all those pre-flight safety films tell you to put your own oxygen mask on first: if you are incapacitated  you will not be able to help anyone else. Your first responsibility must be to yourself.

The good news is that self-care is a combination of attitudes you can adopt, skills you can practice, and habits you can develop that will become second nature. And that’s a gift that anybody can get, as long as they give it to themselves.

It’s absolutely true that your disease may never go away, or even get better. This isn’t about denying the obvious, or the terrible. Far from it. But the (immense) power of self-care is such that you can stake a claim and intentionally build such high quality of life that your post-diagnosis life can be better than it was even before you got sick.

It happened to me. That’s how I know the “getting well” of the title sounds paradoxically impossible but is actually actual.

And you could not ask for a kinder, more knowledgeable, or wiser guide to living better than Spero, a nurse, journalist, health educator, and patient. I appreciated his deep experience and his gentle humor, evident even in the chapter titles:

Chapter 1: Studies Show Life is Hard

Chapter 5: Twenty-Four Reasons to Live

Chapter 7: Your Body–Love It or Leave It

The Art of Getting Well rocked my world, though like any true legend, its exact origins are shrouded in mystery. I can’t even remember how I ended up with it, other than it happened sometime after my diagnosis. But we were totally meant to be together, and that’s all that matters.

my health bookshelf. not shown: all the books I’ve borrowed or given away.

Living well is the best revenge. Start today.

Ready any good health books you’d recommend? Tell us about it!