When did using health insurance to access health care — mental health care, especially, or maybe I’m just paranoid — when did it become this second-class, badge of dishonor ticket to eke in to sit across from begrudging, fifth-choice providers?
Were I to need them, I would have an easier time hiding my food stamps use, and that in situations much less sensitive.
“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.
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.
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!
Serendipity today via Pinterest — someone brought Steph Dodson’s blog and pregnancy story to my attention. I was riveted, because we have so much in common. I started to comment on her story, but it got so long I decided it belonged here instead.
Congratulations! I’m new to your site, but I feel like I already know your story, because it’s so similar to my own.
I was diagnosed with multiple sclerosis in 2007, a few weeks before my 27th birthday, and my disease has been characterized by unremitting pain and many flare-ups. I cut back my work hours and failed therapies and hurt and struggled, and my wife and I assumed kids were out of the question. Who’d take care of whom? The last thing I wanted to do was make life harder for anyone.
In 2011, though, I had a few better months, lost a bunch of weight, and got bit by the baby bug, big time. We tried for almost a year and finally conceived in February 2013. The surprise of our lives was being blessed with TWIN boys!
Though I worried about the potential complications from my MS and from the twin pregnancy, it turned out to be the best months I’ve had since being diagnosed. I had a quick and relatively painless labor; a natural, drug-free delivery; and best of all, two healthy babies.
The boys are now 10 months old. They’re a ton of work and a ton of fun. Even when I’m ready to drop at the end of the night (or let’s be honest, by lunch time), I think about how I almost missed out on All This, due as much to ignorance and fear as to my disease. It shouldn’t be so hard to find information about moms with disabilities!
MS has taken a lot of things from me, and it will continue to take more, but I am so glad we made the stand of making babies. We’re graced by their presence, just as you’ll be graced by your darling daughter, and our life is bigger and richer and ultimately better than I ever imagined possible. I wish all the same for you and your family, and for all women with disabilities everywhere.