#MSsucks, and here’s one more reason why

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Now, in addition to all my other lifestyle modifications kowtowing to MS, I have to keep my loaded panties away from open flames. When will it end, people?!

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On second thought, I might leave him red

As soon as I start to google “what color should my Buddha figure be,” I’m well aware that I’m probably missing the point.

But then I see that autocorrect, in its infinite jest, has turned my “my” into “joy.”

I might learn something in spite of myself yet.

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Serendipity – Disabled Mom Spotting

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.

Dear Steph,

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.

With love and respect,
EJ

The boys that almost weren’t:

An attitude of Thanksgratitude (NHBPM 22)

More than anything, I am thankful today for enough. Having enough, being enough, doing enough.

I don’t want to have it all. I want to have enough of the things that matter– food, shelter, love, life — and I am richly blessed to have enough of all of these. Certainly more than I deserve.

I don’t want to be all things to all people. I want to be me, and be enough to enough people, and I am. Amazing when a birthright feels like such a privilege.

I don’t want to get so busy trying to do it all that I don’t enjoy the experience of being alive. I do enough things to stay busy, and sometimes to even be helpful. I also planted roses last month that I am happy to stop and smell.

(omg this nerd plants metaphors in her yard, call the HOA!)

My aspirations may be too modest. But there have been times in my life where I felt like an empty sucking hole of want disguised as need, and that’s about as miserable as it gets. There’s no life in a black hole like that, and no identity. Only need.

Enough is enough.

I am thankful for learning to recognize that I have enough and to let it fill me up and slosh around and spill over.

In which I redesign a doctor’s exam room to my liking (NHBPM 7)

Instead of: Sitting nearly naked in a freezing cold room
I’d like to see: A warm chest of blankets and Frette robes

Instead of: Little plastic cups to fill up with a urine sample
I’d like to see: Little plastic cups to fill up with frozen yogurt

Instead of: Hard plastic chairs that say, “Don’t make yourself at home. And sit up straight while I”m talking to you!”
I’d like to see: Big leather recliners that say, “Jeeves will be ’round to take your cocktail order in just a few.”

Instead of: Butcher paper on the exam tables. What am I, a piece of meat?
I’d like to see: Silk. Or velvet. Or cashmere.

Instead of: Jars of cotton swabs and tongue depressors
I’d like to see: Jars of Twizzlers and gluten-free pretzel rods

Instead of: Art on the walls that looks like it was stolen from the motel down by the interstate
I’d like to see: Sunshine and trees through a window, or a poster from The Oatmeal

Instead of: No place to recharge devices during your wait
I’d like to see: iPhone and iPad charging cables

Instead of: Old irrelevant magazines
I’d like to see: A transparent and up-to-date list of all prices for services and treatments

What would you change about your doctors’ offices?

A quotation (NHBPM 2)

There is a whole pack of cliches that get lobbed at you when you get sick. Most are intended to empathize, support, or inspire, like:

I’m so sorry.
Let us know if there’s anything we can do.
Everything’s going to be okay.

Thank you, thank you, and I hope so.

Some though, no matter how well-intentioned they might be, really rubbed me the wrong way:

It’s always darkest before the dawn.
But anyone who’s died in their sleep can tell you, sometimes it’s just dark, and the dawn never comes.

You’re such a trooper.
Does this look like a kiddy scout camp-out to you?

God never closes a door without opening a window.
Good! Go stand in front of that window so I can push your smug self out of it.

I do not believe that god has anything to do with whether I get sick, get well, or get down tonight. (And I recognize, of course, that your belief system may vary.) But could god be a general contractor and nobody ever told me?

I came across this passage during the first year of my illness, when my brain and body were finding new ways to surprise and fail me on a daily basis:

Imagine yourself as a living house. God comes in to rebuild that house. At first, perhaps, you can understand what He is doing. He is getting the drains right and stopping the leaks in the roof and so on; you knew that those jobs needed doing and so you are not surprised. But presently He starts knocking the house about in a way that hurts abominably and does not seem to make any sense. What on earth is He up to? The explanation is that He is building quite a different house from the one you thought of – throwing out a new wing here, putting on an extra floor there, running up towers, making courtyards. You thought you were being made into a decent little cottage: but He is building a palace. He intends to come and live in it Himself.  (C.S. Lewis, Mere Christianity)

Clive, you suave devil, when you put it that way, I’m intrigued.

I had expected to have decades before I had to contend with the “normal” declines and disappointments of aging. I had no framework for thinking of my adult body as a thing in flux. But things were hurting abominably and not making any sense now, and this quotation gave me a new perspective — a peaceful one —  from which to consider  my experiences.

I loved the gentle reminder that change can be for the better and that destruction of (at the very least) the status quo is necessary to make room for creation. My suddenly uncertain prognosis might, just maybe, not have to be all doom and gloom in every imaginable way. The Unknown didn’t automatically have to be The Unbearable.

Maybe this experience of crumbling myelin and faulty nerve signaling could in some way be leading toward something better. It doesn’t take a genius to understand that naturally you’d have to give up the flower garden to make room for the swimming pool. But wouldn’t you rather float in the sun than prune roses?

In a shift that I liked to think Anne Lamott would pat me on the back for, I began to consider it a gift to get to become someone else — a new me, a learning me, a remodeled me. Because honestly, my old me wasn’t such a hot property most of the time. Maybe I could walk better, but I was impatient and fearful and lazy. I lacked perspective. I — well, I could go on and on.

I’m still impatient and fearful and lazy, of course, and my perspective needs regular filter changes. But Lewis’s metaphor sticks with me and reminds me to stay open to the possibility that I don’t know all the possibilities.