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?
While the number of patients with annual [drug] spending above $50,000 was just 0.2% of patients, the amount of drugs they and their health plans or employers paid for accounted for 16% of total spending…
I’d been having symptoms for six months prior, and doctor visits and diagnostic workups for a couple. At each blood draw, MRI, and lumbar puncture, the providers rattled off lists of differential diagnoses they hoped to rule out (brain tumor, HIV, lupus, transverse myelitis, B12 deficiency, sarcoidosis…and yeah, MS) so it wasn’t exactly a huge surprise.
The biggest surprise was that nobody ever actually said, “EJ, you have MS.” There was no tearful meeting in the doctor’s fancy office, no fat acceptance envelope in the mail, opened with shaking hands.
The doctor ticked a box on the checkout sheet, and I scheduled my next MRI and started picking a DMD to try. I went home. I went back to work.
Life went on the same as always.
Life went on completely different.
Life went on.
And that’s about the grand sum of everything I’ve learned so far.
When I first heard that I might have this thing called MS, my first goal as a new patient was to Get Informed. My doctors were the first to admit they didn’t have most of the answers, because each person’s experience with MS is different. There were no crystal balls or prognostic tests to run.
It was frustrating at first, but that open-endedness emboldened me to become the expert on my self and my condition. The preoccupation with learning helped take some of the sting out of an unknown and uncertain reality.I researched everything I could find on the topic. I wanted a map to this uncharted territory I found myself dropped in.
What else could I possibly lose?
After a year or two of getting oriented, I aged out of the honeymoon period of being “newly diagnosed” and became just “a person living with MS.” My goal changed to Endurance. I knew everything I needed to know about MS — it sucked.
This was a darker period. I hunkered down and prepared to take the blows as they landed, but surviving and thriving are worlds apart. I started to settle for a life of subsistence, unhappily.
What have I got to lose?
Once the vision thing happened last year, though, my goal as a person living with sometimes-disabling MS became Push the Limits. This disease may take things from me, but I needn’t abet it by surrendering a single. thing. more.
What if I trip while training for a 5K? So what? Run all the miles.
What if I dyed my hair purple and looked ridiculous? What if it looked awesome? Do red next. Then pink!
What if I can’t do something next year, or in ten years, that I do now everyday? I’ll find new ways, because I’ve done it before.
The important thing for me to remember is that everything does evolve. A mantra that I adopted during the endurance stage is “Everything is always changing.” It sounded more neutral/honest than saying things would improve, which felt like a lie much of the time. Still does.
But remembering that everything is changing helped me get through painful procedures and long days and nights, in part by priming my brain to carefully observe, mindfully, and watch for the slightest changes. Whatever was causing me grief, well, even that was changing: sometimes fast, sometimes slow, but nothing, NOTHING, is permanent.
Because even if a diagnosis or an ache was my new companion for life — even if that part of the equation might never change — there would be ripples of change in something related to it, something neighboring it. My reaction to it, my coping with it, my expectations — something would change and get more tolerable or actually better, or at the very least, a new threat would become an old threat.
Because if nothing else, time changes. And luckily, I do, too.
Done! You can read the highlights here, and click here to hear it all on 8tracks. Hear, hear!
“You’re body’s a dream that turns violent” (Catch My Disease by Ben Lee)
“Now no doctor’s medicine
Will do me no good
Lord have mercy, children
I wished it would” (I’m Sick, Y’all by Otis Redding)
“Baby, if you never got sick, I wouldn’t get to hold you” (If You Never Got Sick by The Wallflowers)
“How long you think that
You can run that body down?
How many nights you think
That you can do
What you been doing? (Run That Body Down by Paul Simon)
“There’s someone in my head but it’s not me” (Brain Damage by Pink Floyd)
“Ooh, when it gets through to me, it’s always new to me
My double vision gets the best of me” (Double Vision by Foreigner)
“Her name is ___, her eyes are ___” (Her Name Is… by George Jones)
“Sometimes it’s like someone took a knife, baby, edgy and dull
And cut a six-inch valley through the middle of my skull” (I’m on Fire by Bruce Springsteen)
“She’s holdin’ leg wonderin’ how to feel them” (Legs by ZZ Top)
“You’re what happens when two substances collide
And by all accounts you really should have died” (A Nervous Tic Motion Of The Head To The Left by Andrew Bird)
“I’ve lost my sight, but not the vision” (Reboot the Mission (feat. Mick Jones) by The Wallflowers)
“And I’ve got one, two, three, four, five
Senses working overtime” (Senses Working Overtime by XTC)
“Oh Mom, I wonder when I’ll be waking
It’s just that there’s so much to do
And I’m tired of sleeping” (Tired Of Sleeping by Suzanne Vega)
“But when she gets weary
Try a little tenderness” (Try A Little Tenderness by Otis Redding)
“And after all the violence and double talk
There’s just a song in all the trouble and the strife
You do the walk, yeah, you do the walk of life” (Walk Of Life by Dire Straits)
“You spin me right round, baby
Right round like a record, baby” (You Spin Me Round (Like A Record) by Dead or Alive)
“You got the gift to give me parasthesia” (Pins and Needles (w/ Fujiya & Miyagi) by Project Jenny, Project Jan)
Rolling with the Changes
“And falling is like brand new rain,
Places I have never been” (Another Country by Tift Merritt)
“I’ve stumbled on the side of twelve misty mountains,
I’ve walked and I’ve crawled on six crooked highways,
I’ve stepped in the middle of seven sad forests,
I’ve been out in front of a dozen dead oceans,
I’ve been ten thousand miles in the mouth of a graveyard,
And it’s a hard, and it’s a hard, it’s a hard, and it’s a hard,
And it’s a hard rain’s a-gonna fall” (A Hard Rain’s A-Gonna Fall (Bob Dylan cover) by Edie Brickell & The New Bohemians)
“Miniature disasters and minor catastrophoes
Bring me to my knees” (Miniature Disasters by KT Tunstall)
“I smoke old stogies I have found, short but not too big around
I’m a man of means by no means, king of the road” (King of the Road (Roger Miller cover) by Rufus Wainwright)
“Last years troubles they shine up so pretty
They gleam with a luster they don’t have today
Here it’s just dirty and violent and troubling” (Last Year’s Troubles by Suzanne Vega)
“Life is sad, life is a bust
All you can do is do what you must
You do what you must do and you do it well” (Buckets of Rain (Bob Dylan cover) Beth Orton & M. Ward)
“How can I explain to you?
How somebody can get so very blue, now
How can I tell you about my past?” (Mr. Pitiful by Otis Redding)
“And I’m tired from all the weight
Tired of being strong
So won’t you come and stay
And let me lay
Down in your arms
Down in your arms” (Troubled Mind by Catie Curtis)
Turn and face the strange” (Changes by David Bowie)
“This ain’t no party, this ain’t no disco
This ain’t no fooling around” (Life During Wartime by Talking Heads)
“When all the parts of the puzzle start to look like they fit
Then I must remember there’ll be days like this” (Mama Said There’d Be Days Like This by Van Morrison)
Working with Doctors and Meds
“Now I want to understand
I have done all that I could
To see the evil and the good without hiding
You must help me if you can” (Doctor My Eyes by Jackson Browne)
“And after all that she’s been through
Oh the doctor say: “There ain’t nothing we can do”” (Long Line of Pain by Amos Lee)
“He said my epidermis was darling
And found my blood as blue as can be,
He went through wild ecstatics
About my lymphatics,
But he never said he loved me” (The Physician (Gershwin cover) by Janet Klein & Her Parlor Boys)
“Cuz I know that I don’t belong here
And I know the pills don’t work for me no more” (The Pills Stopped Working by Hem)
“Shook my soul, and stole my dough
Left my condition down a deep dark hole
I’m a pincushion, gotta face the facts
I’m just a pincushion, do everything she ask” (Pincushion by ZZ Top)
“If I got my hopes too high, this is no easy kind of life.
But I see it in my mind’s eye, touch me real as daytime,
I can’t keep from trying” (Hopes Too High by Tift Merritt)
“Blackbird singing in the dead of night
Take these broken wings and learn to fly
All your life
You were only waiting for this moment to arise” (Blackbird (Beatles cover) by Sarah McLachlan)
“I’m still alive, and I will survive
I can take what life’s got to give, just need a little time” (Still Alive by Social Distortion)
“Don’t let us get sick
Don’t let us get old
Don’t let us get stupid, all right?
Just make us be brave
And make us play nice
And let us be together tonight” (Don’t Let Us Get Sick (Warren Zevon cover) by Jill Sobule)
“It’s a pity, it’s a crying shame
Who pulled you down again?
How painful it must be
To bruise so easily inside” (Life Is Sweet by Natalie Merchant)
“I don’t know nothing except change will come
Year after year what we do is undone
Time gets moving from a crawl to a run
I wonder if we’re going to ever get home…
So many things that I had before
It don’t matter to me now
Tonight I cry for the love that I’ve lost
And the love I’ve never found” (When It Don’t Come Easy by Patty Griffin)
“Oh I get by with a little help from my friends
Mm I get high with a little help from my friends
Mm gonna try with a little help from my friends” (With A Little Help From My Friends (Beatles cover) by Joe Cocker)
“Here’s what I find about compromise-
Don’t do it if it hurts inside
Cause either way you’re screwed,
And eventually you’ll find
That you may as well feel good
You may as well have some pride” (Second Time Around by Indigo Girls)
Coming Back Strong
“‘Cause I’m back on the track
And I’m beatin’ the flack
Nobody’s gonna get me on another rap
So look at me now
I’m just makin’ my play
Don’t try to push your luck
Just get out of my way” (Back In Black by AC/DC)
“Flip another breaker
Crack another fuse
Check, check, check, a hey, hey one two
Gonna make it baby, even if I have to crawl
Gonna hit full speed, even if I hit the wall” (Smoke Another by Cross Canadian Ragweed)
“I am going to make it through this year
If it kills me” (This Year by The Mountain Goats)
“Well I was born to run
To get ahead of the rest
And all that I wanted was to be the best
Just to feel free and be someone
I was born to be fast, I was born to run” (Born to Run by Emmylou Harris)
“Here comes a comeback
The kid is back, back on track,
And there goes my hero
He’s an underdog, he’s coming out on top” (Comeback Kid (That’s My Dog) by Brett Dennen)
“Things are goin’ great
And they’re only gettin’ better
I’m doin’ all right
Gettin’ good grades
The future’s so bright
I gotta wear shades” (Future’s So Bright (I Gotta Wear Shades) by Timbuk 3)
“So I try a new direction
I’m going to give myself a resurrection
I’m getting ready” (Getting Ready by Patty Griffin)
“if tomorrow never comes
i wont give a damn
if tomorrow never comes
i will not be afraid to meet my maker
just the way that i am” (If Tomorrow Never Comes by Todd Snider)
“Now, I don’t care what you think
I’ma do my thing tonight
I came to dance, came to drink
Livin’ that disco life
I burned about a thousands cals
Dancin’, movin’, shakin’, groovin’
So fuck what my trainer say
I’m finna get a hot dog (A-a-a-a-a-a-after this club)” (Hot Dog by LMFAO)
“And you know
I’m so wired up
Don’t need no coffee in my cup
Let it all hang out” (Jackie Wilson Said (I’m in Heaven When You Smile) by Van Morrison)
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.
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?
Now I can effuse about my favorite health book, because it is awesome!
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.
Living well is the best revenge. Start today.
Ready any good health books you’d recommend? Tell us about it!
It’s common for people living with chronic (and often, invisible) health conditions to wonder about disclosing the facts of their illness and its impacts on their lives. When, and how, do you tell somebody you’re dating? Or your boss? Or the bag boy at the grocery store?
Fortunately, there is one simple answer that applies to every situation:
ha ha! A sick joke! I said it was simple, not easy.
The Case for Disclosing
You getting diagnosed with an incurable disease falls into the category of something your closest friends and family would be hurt NOT to know about. Better yet, they’re unlikely to use your diseased state against you. Tell them all.
For that matter, everyone who’s ever met you would probably want the chance to wish you well. Give them that chance.
Even if you’re not particularly religious, if you live in a red state, lots of folks around you probably are. You’d practically be doing them a favor by giving them a reason to pray for you. Spread the gospel.
If you need accommodations to keep doing your job, you’ll have to tell the boss. And you should do so before your performance suffers. Tell early and often.
Shrek says, “Better out than in.” He was probably talking about news of your condition! Get the word out.
When you’re thanking The Academy for that Oscar you’ve just been awarded, it’d be really awesome to thank your neurologist along with Jesus and Mom and the director. They like you. They really like you!
The Case for Not Disclosing
Telling somebody about your situation is like ringing a bell that can’t be unrung. No take backs.
You didn’t tell your mom about all those things you did in college or that speeding ticket or that perm. Why make her worry now?
If you can keep doing your job without accommodations, why muddy the waters by telling your boss? Just keep working.
As for your colleagues, anything you tell them stands a chance of ending up in the boss’ ear. Best keep mum.
If you just want to make conversation, do everyone a favor and read a book, or see a movie, or rob a bank, and tell us about that instead. Conversation killer.
Need a chair or a large-print menu? Try requesting assistance or favors without offering any explanation at all. You may be surprised at how often you can get what you want/need without offering a backstory. Please and thank you.
Theory and Practice
At one time or another, my experience disclosing has been a mix of all of the above. I have generally preferred to err on the side of waiting too long to tell, because I am all too aware of the “no take backs” danger. And let’s be honest — telling anybody that you have a chronic/degenerative/incurable/hard to treat/painful disease is like dropping the world’s biggest lead turd into a conversation. Why rush it along?
It also took time for me to integrate being sick into my self concept, and to get comfortable enough with it that I could mention it when appropriate. Remember that feeling of being a really self-conscious pubescent in a traitorous body? (Nobody? That was just me?) Well, the early days with MS felt sort of self-conscious like that, and I was in no hurry to point it out to anyone.
Maybe I read too many Nancy Drew and English manor house mysteries growing up, or watched too many X-Files. Don’t judge — my little sister had a thing for Mulder, and I had a thing for dark.
I’m a curious sort of girl. Asking and answering questions is my favorite thing to do. I am rarely happier than when I don’t know something, because that means…drumroll, anticipatory salivation, happy dancing…I get to go find out.
That’s why even after swearing upside down and sideways that I would never, EVER, go back to school, I ended up getting a degree in library and information studies. (Thanks, Daddy! I promise this blogging thing is just a lark!) Getting trained as a librarian was as close as I could get to being a professional searcher, without having to carry a gun and eat in my car like a private investigator.
It’s also why I love thrift shopping. Not only do you get a strange mix of eras and objects to sift through, you get mystery items missing their original packaging. I had a lady awhile back turn to me in the kitchen stuff aisle and hold up one of these that she found in the utensil bin:
“Do you what THIS is?!” she asked.
“I believe it’s a shedding blade.”
“A what now?”
“It’s a tool for grooming dogs with thick coats. But you could probably run it through the dishwasher and use it to de-seed a cantaloupe.”
I try to be helpful. I”m sure she meant to thank me before running away.
Now, have I ever bought, touched, or used a shedding blade? No.
Have I ever said the words “shedding blade” out loud? Nope.
But could I piece the cultural detritus in my head together for the win? Yes. And failing that, could I have used my iphone to figure it out? For sure.
“I don’t know about this, but I’d like to” is something I feel or say or think at least 20 times a day. The internet has been the perfect vehicle to feed my addiction curiosity. When I have a health question, I can hit MedlinePlus or PubMed or MayoClinic or a million other sites. I have a steady stream of MS-related abstracts and news delivered via RSS right into my google reader and twitter stream. I correctly diagnose my friends and family so often that I usually end our phone conversations with, “I’ll send you my bill.”
Even before the internet, I was the kid with her own reference library. (Thanks, grandmothers and yard sales!) I loved reading the front matter of the phone book and going through the trash at the post office. Flipping through almanacs and atlases was a perfectly reasonable way to spend an afternoon.
But my all-time favorite lookbook was The American Medical Association’s Family Medical Guide, whichever edition was published in the early 1980s. I would pull out that fat navy volume and just browse. There were the usual anatomical illustrations that any pre-pubescent kid would find stare-worthy. Lots of basic first aid information, just in case.
But there was also an entire section of delicious flow charts for diagnosing and treating common injuries and illnesses – a simplified glimpse into the way doctor’s think. And somewhere, buried in the middle, there was a picture of somebody with black hairy tongue disease:
You’d be forgiven, after flipping through my blog, for wondering if perhaps this should instead be titled “Why I DON’T Write About My Health.”
Most of the time, I don’t write about my health, because it’d be like writing about breathing or blinking. Most of the time, multiple sclerosis (MS) is just a small part of who I am. And I have far too much pride to consider it the most interesting part of who I am – I’ve spent a lifetime cultivating talents and eccentricities, way before that upstart MS showed up.
When I was first getting sick and getting diagnosed, back in early 2007, I did write a series of private blog posts for friends and family sharing my adventure. Because at that point, all was shiny and new and foreign, and I was hungry to share these strange experiences. Over the course of just a few months, I had a lot of firsts:
first visit to a neurologist
first lumbar puncture
first time I had a headache so bad it made me puke
first blood patch
first diagnosis of an incurable disease (being a smartass isn’t an official diagnosis, Einstein)
first time I made my parents cry (since I was about 17, anyway)
first time asking for time off work for doctor appointments
first time choosing to find a specialist
first time doing IV steroids
first time giving myself shots
first time somebody told me to my face that they were praying for me
first time understanding that pity is a vile and odious thing
And on and on and on. I was in a hurry to understand what was happening and also to learn from others who had gone before. But I had nothing to contribute, so I didn’t write about it. I instead became a champion forum lurker, reading other people’s posts about their trials and tribulations and triumphs.
Hearing all their stories lit a carpe diem pilot light in me. At age 27, I got busy living my life on purpose, because Fate had played the wild card and my future would be anyone’s guess. I didn’t want to look back on a bunch of regrets. I cut my hours at work and started a masters program. I bought a house. I finished the masters program and landed my dream job. I got promoted at my dream job. I got blinded by a brain lesion and had to quit. I mostly recovered and stayed home.
Through it all, I also kept breathing and blinking, because that’s life. I kept having MS, because that’s my life.
One of the blogs I read had a great post recently about the relationship between being lucky and working hard that really resonated. She was writing about her experience in making and birthing a baby, but there were strong parallels to my experience with health and illness.
Attributing all your success in having good health – or a good day, or sufficient insurance benefits, or a personal breakthrough – to good luck sounds like bragging. Anyone will tell you that it’s just dumb luck, and you’re privileged to get a flicker in your favor. Try not to jinx it by getting used to it, because things are likely to change. And if you have a chronic, degenerative disease, they’re guaranteed to change, and not for the better.
But I have been lucky: to have a strong support system, to have insurance coverage, to have a relapsing-remitting disease course. And in a million little ways, grace has shown up to just about balance out the bad. I didn’t cause it and likely don’t deserve it, but I’ll take it.
What I”m figuring out is that you can’t avoid driving the boastmobile even by claiming all your success is due not to luck but to your personal efforts…because that sounds like bragging, too. And for a long time, I couldn’t own up to the work I was doing, even though I met it every day with a life-or-death seriousness.
But I do work hard. I work hard to live the best life possible with MS. Sometimes that has meant eating less and exercising more, so that I’d be stronger and more relaxed and more functional. Sometimes it has meant surrendering the money and social validation that comes from full-time work, so that I’d have less pain and more energy to be present for my family. Sometimes it means drawing boundaries around the things I will and won’t do for others. Sometimes it means speaking up to remind my doctors that I am a unique person with a not-quite-typical disease course and that I won’t settle for the autopilot version of their advice.
All the time, it means I am pushing back against the forces of inertia, complacency, and condescension – inside myself, against my disease, and from society at large.
I don’t want to be anybody’s statistic, and that takes work. And luck.
I don’t want to be that fat lady in the wheelchair at Wal-Mart, and that takes luck. And work.
In most ways, I’m stronger than I was before I knew what MS was. And I think that’s one of the reasons I’m writing about my health more. I’m lucky and I’m proud. And I remember what it felt like when I was neither. I learned, though, that optimism and strength can be taught and learned through a loving smile, a caring touch, or the written word.
This week’s long post is brought to you by my new self-imposed sponsor, Finish-a-Draft Friday, whose motto is “If not now, when?”
Last week, I read a really cool essay by economist John Quiggin called “The Golden Age.” I have never taken so much as a single class on economics, but I am frequently drawn to read about them, probably because they tend to mash-up history, sociology, psychology, science, art, and any of the other things I like, so I can think about them all in new ways.
Quiggin’s essay covered much of that mash-up ground, framed around a discussion of the influence of Keynes’s 1930 essay “Economic Possibilities for our Grandchildren.”
Like the rest of Keynes’s work, the essay ceased to be discussed very much during the decades of free-market liberalism that led up to the global financial crisis of 2007 and the ensuing depression, through which most of the developed world is still struggling. And, also like the rest of Keynes’s work, this essay has enjoyed a revival of interest in recent years, promoted most notably by the Keynes biographer Robert Skidelsky and his son Edward.
The Skidelskys have revived Keynes’s case for leisure, in the sense of time free to use as we please, as opposed to idleness. As they point out, their argument draws on a tradition that goes back to the ancients. But Keynes offered something quite new: the idea that leisure could be an option for all, not merely for an aristocratic minority.
This and the rest of Quiggin’s essay resonated with me, in part because I’d recently seen this quotation from Buckminster Fuller:
We must do away with the absolutely specious notion that everybody has to earn a living. It is a fact today that one in ten thousand of us can make a technological breakthrough capable of supporting all the rest. The youth of today are absolutely right in recognizing this nonsense of earning a living. We keep inventing jobs because of this false idea that everybody has to be employed at some drudgery because, according to Malthusian-Darwinian theory, he must justify his right to exist. So we have inspectors of inspectors and people making instruments for inspectors to inspect inspectors. The true business of people should be to go back to school and think about whatever it was they were thinking about before somebody came along and told them they had to earn a living. (as quoted in Elizabeth Barlow’s “The New York Magazine Environmental Teach-in,” 1970, New York Magazine)
I think they were on to something, don’t you? Especially given the technological advances of our digital age! Maybe the real jobs crisis – the real problem behind the unemployment problem – has to do with our (America’s) outdated expectations of 40+ hour work-weeks and utter lack of unconditional guaranteed income and healthcare support. Just a thought.
Adam Ozimek, blogging at Forbes felt Quiggin’s essay merited further speculation, too. But he also suspected “that Americans would generally spend more of their extra time sleeping and watching TV” than “enjoying the slow food movement, tending to their organic gardens, and reading to their children.”
Would destructive idleness really be a threat to a society with more free time and less work? My admittedly small sample size of exactly 1 says no, and here’s why.
Last year, about a week before my birthday, my left eye started seeing fuzzy. I could still see colors perfectly, so I just made all the fonts on my computers and gadgets really big. I assumed it was optic neuritis, which I’d never had before, but which is really common in MS. I was really busy having a birthday and tying up loose ends at work so I could be off for a few days to go get married 500 miles away. I decided to give it a few days to resolve on its own before I called the doctor.
But as soon I woke up on Mother’s Day – five days before our scheduled trip halfway across the country – I knew something was really wrong. My eyes were too sensitive to light, kind of like a migraine but not one, so I was wearing sunglasses indoors and out.
People – and dogs even – had only half a face when I looked at them, like a nightmarish hallucination but not one. I could no longer read anything for more than a few seconds, and even that took a brain-crushing amount of effort. I limped through the last few days of work before taking off the pre-scheduled long wedding weekend.
Then, as soon as we got back home from the trip to DC, instead of going back to work, I got put in the fast lane to see The Taciturn Ophthalmologist. After a silent hour of examination and testing,
He: “The results of your visual field test look like a stroke, but it’s probably not one.”
Me: “Well. That’s probably good news.”
An MRI the next day showed that it wasn’t a particularly sizable lesion, as some of mine have gone, but as with any real estate, it was the location, location, location that mattered. This new lesion was located in exactly the part of the visual pathway (Meyer’s Loop) that caused me to develop left superior homonymous quandrantanopia. In laymen’s terms, if you imagine the visual field of each eye as an analog clock face, with one hand on the 9 and the other on the 12, I lost the piece-of-pie shaped sweep of everything between the 9 and 12. My visual field tests looked like this:
The scariest part was that I couldn’t reliably judge how much I was missing. My perception was that the problem was all left-eye based, but the testing showed that I obviously wasn’t seeing enough with eithereye, so before I spilled blood on the nation’s highways, I had to stop driving.
And because I worked 35 miles from home in an area with no public transport, that meant I had to stop working.
Even with the temporary reprieve from occupational demands, the first days of the experience were filled to bursting. First with traveling and getting married, but not before a few heart-to-hearts along the lines of, “I know we’ve been together for 14 years, but if you wanted to back out because of this shit and find a wife who’s less defective, I’d totally understand. Anyone would understand.”
Lucky for me, KK herself didn’t understand.
So instead of going back to work, I spent days, weeks, months:
seeing the ophthalmologist
getting MRI’d to rule out a stroke and rule in an MS flare
meeting with the neurologist to go over the MRI results
doing 3 days of IV steroids
waiting weeks for the steroids to kick in
seeing the neuro-ophthalmologist
fighting the insurance company to cover a $23,000 5-day dose of Acthar gel when the steroids didn’t work
exhausting appeals to the insurance company to cover it
working with the angels at NORD to get the Acthar for much MUCH less than full price
self-injecting the Acthar for 5 days
waiting weeks for the Acthar to work
waiting for anything to work before my 12 weeks of FMLA protection ran out
waiting for anything to work before my 6 months of short-term disability ran out
During this relative downtime, I couldn’t take advantage of my primary leisure activities of surfing the internet and reading books/magazines. TV was useless, and I’ve always hated talking on the phone.
So I developed new leisure activities.
My family was kind enough to visit extra much and give KK a break from having to chauffeur me around. Benefit: I had surprise movie-quality heart-to-hearts with my dad and lost some longstanding anxiety about him dying.
Good friends gave me gigs of new music and audiobooks and let me crash their guest rooms for days on end when KK had to travel for work. Benefit: I discovered great new artists and got to spend quality time with my favorite people in the world.
I listened to most of the TED talks. Benefit: I kept my brain from turning into mush and still had things to add to conversations.
I taught myself ways to cook without lopping off digits and ways to clean so our house wasn’t condemned. Benefit: I got over a stupid perfectionist streak that held me back a lot more than a physical disability could.
I walked the dog on our quiet street for miles a day. Benefit: I started getting into the best shape of my life and ended up losing 50 pounds.
I floated in the pool, drinking bourbon, for hours most afternoons. Benefit: My low vitamin D levels finally rose enough for the first time in 3 years that I could cut my prescribed supplements by half.
What I didn’t do is vegetate or rot or rust. I didn’t atrophy into a puddle of directionless goo and regress to an infantile state. I also didn’t have to goad myself into doing things for the sake of doing things.
At times, early on, I had flashes of distress about this new animal-simple existence of moving through the days satisfying basic physical demands and producing nothing, adding nothing, earning nothing.
But as a little more time went by and I started to feel out my new limits, I felt more human. And not just more human than the blinded-animal me, but more human than I had ever been as a white collar cog in the work-eat-sleep-work machine. I was no longer biding my time.
Without having to constantly guard my energy so I’d have enough to surrender at work the next day, I could challenge myself physically when I wanted to. And if I needed to nap in the middle of the afternoon, I could. And if I didn’t need to, I didn’t.
When you have only tiny pockets of free time in the evening or weekends, it’s really easy to gloss over them, because you know your “real” time is work time, and it’ll be coming around again before you know it, certainly before you’re ready. So you never really tap into the potential of your free time. How many weekends are spent washing and drying and ironing your work clothes for the week ahead, or running errands you won’t have time to do during the week because you’ll be stuck at work? Or drinking away an evening to forget your shitty boss and the broken system you’re yoked into?
When I got handed the backhanded gift of swaths of free time, I had no reason not to surrender into it. My sweet wife could ensure I would not end up homeless and hungry, at least not right away. The time would pass no matter what I did or didn’t do. My eyes would get better, or not, no matter what I did or didn’t do, and not even the best doctor in the world could tell me if or when that might happen.
So what would I do at this exotic crossroads of (1) nobody telling me what to do for the first time in my life and (2) having most of the autonomy of a legal adult? I had to listen hard for what still, small voice might come to tell me, and I had to tell all the parent/teacher/coach/boss/church/habit voices to go to hell. Repeatedly.
I started doing what I wanted, without considering whether something was small enough to be feasible or big enough to be important or whether I could get it finished by Sunday night. Eat one more cookie or dye my hair purple or paint the kitchen were equally difficult and therefore equally attainable. Besides, who was going to judge me now, and by what scale?
To borrow from the Zen koan, what do you do before you’re sick? Chop wood, carry water. What do you do after you’re sick? Chop wood, carry water.
I experimented with things I thought I might want, and kept going if it turned out I did and stopped if it turned out I didn’t. Without feeling guilty, I declined to do things I didn’t want to do or to see people I didn’t want to see. Who was going to judge me now, and by what scale?
I lived my new life my new way, and the world didn’t implode. It actually improved.
By the time my vision finally improved and the doctor green lighted me to drive and work again, eight months after this all started, KK and I made the decision that being home agreed with me. A lot of people noticed that it did.
I was less stressed, better rested, and physically stronger than I’d ever been. Our home life was more harmonious when I wasn’t mad at The World and beaten down by soul-draining commutes. I wasn’t just physically home for more hours every day – I was Present when I was at home. I was told I looked younger. I felt younger. I was learning how to play.
It turns out that instead of being destructive, as economists fear, my free time was instructive and constructive. And it was anything but idle. I stopped participating in standard American leisure time activities like compulsive eating, brainless TV watching, and endless shopping – at first because I couldn’t participate, but then because I didn’t need to. I didn’t need to be numbed anymore just to get through the week. I didn’t need to carry around the pain of trying to be somebody else to please another somebody else.
Actually, it was destructive, in one way. The experience has broken me, radicalized me, to the point where I’m damaged goods to the work-eat-sleep-work cog factory overlords. I guess I could choose to put myself back in a position of needing to be numbed and trying to be somebody else, but my price is so much higher now. They can’t afford me.