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

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Today I lost a bet with myself

I’ve had a pool going for a couple of years now as to whether Georgia would first recognize gay marriage (aka “marriage”) or legalize cannabis.

With the Supreme Court likely to rule soon in favor of enforcing the former, I’m intrigued that a bill just passed to also begin the process of making way for the latter.

Georgia Gov. Nathan Deal on Friday said he would sign into law a bill that would make the Peach State the 24th state to legalize medical marijuana, continuing the rapid expansion of cannabis into the Deep South and underscoring a dramatic shift in pot politics for social conservatives in the US.

I was the only participant in my pool, so financially it’s kind of a wash. But historically? 2015 is shaping up to be a pretty interesting year.

via How ‘marijuana refugees’ brought legal cannabis to Georgia – CSMonitor.com.

Keep Your Laws Off My Body? MS Edition

I hear cannabis can really be of benefit people with neurological conditions like my own, and those fringe hippie wacko slackers over at the American Academy of Neurology agree.

I’m too sick and tired to get my hopes up, but boy, passage of a bill like this sure would restore some of my faith in our elected officials.

Well, not MY elected officials, because my candidates never win. But somebody’s elected officials, bless them.

“The science has been in for a long time, and keeping marijuana on Schedule I — with heroin and LSD — is ludicrous,” Cohen said in a statement Tuesday. “I am pleased to join with Congressman Don Young in introducing this important bill to bring the federal government in line with the science and the American people, respect states’ rights, remove the threat of federal prosecution in states with medical marijuana, and help our citizens access the treatments they need.”

via Historic Medical Marijuana Bill Gains Momentum.

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!

Questions I have for other patients (NHBPM 19)

Questions I have for other patients:

1. Before your experience of acquired disability, did you know that  disability is not a neat duality? I was surprised to find it’s not black/white or on/off or able/disabled. (Same goes for continence. Oi.)

2. Did your doctor encourage you try using mobility aids, or did you have to figure it out yourself?

3. Also, assuming you have periodic check-ups with your neurologist, how do you communicate to your doctor about the totality of your experience living with MS? I wrestle with knowing that what they see of me on any given day may not at all represent my day-to-day health or ability.

4. Am I the only one to figure out that the mental components of your coping toolbox are as important, or even more important than, the physical resources you bring to the fight?

5. Do you find the “help us find a cure!” and “let’s all cure it” and “fund a cure!” messages really stilted and distasteful, especially when it’s coming from the major national organizations dedicated to your disease? Research is important, of course.

But what about things we can change or improve now to make life easier for people with a disease that may or may not ever be curable, things like more flexible work schedules, more telecommuting, more accessible housing, medical cannabis, better public transportation, more cohousing options for adults and families, etc etc etc? A cure for MS would only benefit people with MS, whereas systematic social and infrastructure changes could benefit everybody!

6. In magazines and on websites for people with MS, have you also noticed the mismatch between the moderate-to-high level of disability depicted in images and topics related to living with MS versus the happy words used to flog a hopeful, positive prognosis? It makes me suspicious that they know something they’re not telling me.

7. For those of you whose blog is based around your condition, how in the world do you keep it up?! This 30 day streak is wearing on me, and I get the feeling I may never write  about MS again once it’s over. (“It” = the 30 day streak, not the MS; see notes on “cure” above.)

What questions do you have for patients with MS, or any other chronic illness? Ask away, and I’ll do my best to share, find, or make up an answer.