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?

I’m finally in the 1%

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…

via Drug Costs Top $50K A Year For Half Million Americans – Forbes.

yeah…one of my drugs alone (a biologic) costs about $156,000 a year.

It comes with no guarantees. It will not cure my disease. It will not save or extend my life and in fact, carries the “rare but serious” potential side effect of taking my life.

The rest of my meds are older, cheaper generics, largely prescribed to help deal with the shame of taking a drug that, in one year, costs more than my house.

More than most of the houses in the world.

Happy MS-aversary to me? 8 years and counting

The actual day was yesterday — I started a post and babies woke up and and and…


Eight years ago today yesterday, I got an official diagnosis of multiple sclerosis.

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.

A first.
A first.

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.

Life goes on until it doesn’t.

Here we are today.

We’re the lucky ones, even when we forget we are.

Thanks for being here with me, today.

Where do you see yourself in five years? The evolution of a patient’s goals (NHBPM 25)

What do I stand to lose?

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.

A playlist for MS (NHBPM 17)

Create a playlist for your health.

Done! You can read the highlights here, and click here to hear it all on 8tracks. Hear, hear!

Generally Unwell

“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)

Specific Symptoms

“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)

Still Alive

“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)

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?


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!

Disclosure (NHBPM 4)

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:

It depends.

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.