Multiple Sclerosis Awareness Month: The Monster She Fights


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Yesterday began Multiple Sclerosis Awareness Month.

Appropriately enough, Rebecca Hitt and I spent the day in Cullman for what could possibly be her last MS treatment. Possibly. Hopefully.

Rebecca’s experience with multiple sclerosis isn’t really a secret, but it’s not something we talk about a lot either. Honestly, it’s just sort of something that is.

She’s fortunate. We’re fortunate. If you follow us on Facebook, Rebecca doesn’t seem like someone struggling. We live full lives. There are people who have struggles with MS far far greater than she does. For Rebecca, it manifests in many “little” ways — heat can be more oppressive, she feels random constricting, her balance wanes randomly. It’s not always there, but it’s always nearby.

It’s easy not to know it. I respect her greatly for that. I’m half a foot taller than Rebecca. When we walk side by side, for every three steps I take, she takes four. You don’t notice it, but she’s always working a little bit harder. For those around her, that’s what her MS is like. She’s walking beside you, and you never notice how much more she puts into it than you, how much harder she works for it than you. It’s easy to miss. She makes it easy to miss. I’m proud of how brave she is. I’m proud of the positive attitude with which she undertakes her days.

For others, MS is a very different thing. They can’t walk beside you, because they can’t walk. It’s a condition that manifests itself in so many different ways. For some, it’s unnoticeable for years. For others, it’s crippling from its first appearance. We’re fortunate that hers is more benign. But we’ve also been always aware that could change at any moment. In MS, your body attacks its own nervous system. If you’re lucky, it does so in a way that causes mild annoyance. If you’re unlucky, it does so in a way that impairs you dramatically. Either way, it does so suddenly, randomly and without warning. We’re grateful for today, but we never know about tomorrow.

Save that, hopefully, now, we have some idea. Rebecca yesterday completed the second round of a relatively new treatment called Lemtrada. She took infusions for five days last year, and for three days this year. The treatment,a repurposed chemo, strips away her immune system. A new one grows, which, hopefully, decides not to attack her nervous system. It’s not a cure, they tell me, but a treatment that, hopefully, has permanent results. I understand some of it, but if you ask me too much about it, you’ll discover it’s one of those things that for me borders on Clarke’s Third Law – “Any sufficiently advanced technology is indistinguishable from magic.” I work at NASA, and this stuff befuddles me.

So far, it seems to be working. There’s noticeable improvement already from last year’s treatment. Hot days are less oppressive. The random constricting is less constrictive. She has more energy. Hopefully, those trends will continue and be amplified by the second round. We joke about that last change. At eleven years my junior, it can be hard enough to keep up with her as it is. If she gets any more energy, it’s going to be hopeless. I’ve joked that they should just half-Lemtrada her so I still have a shot.

But as nice as the improvement to the symptoms are, the biggest change will be not having to worry about tomorrow. She’s not had any new activity, any new lesions, any new attacks on her nervous system since round one. That’s a good sign. We’re never beyond worry – this is a new treatment, less than a decade old, so no one knows what year ten looks like. And nobody knows for sure what year two for Rebecca Hitt looks like. But maybe we can worry a little less.

We’re blessed. Crazy blessed. Blessed to live in a time that this is possible. Blessed to have insurance that will pay for it. Blessed to live near a doctor – Dr. Christopher LaGanke of North Central Neurology Associates – that’s been a pioneer in this treatment. (When we started dating and she told me about her condition, I pointed out that now that she was working in Huntsville, she could probably get a better doctor here. She just told me to Google her doctor. I did. I never suggested that again.) We’re blessed by casual miracles, wonders so seamless you miss the wonder of them. But they’re there. And we’re grateful.

So that’s my Multiple Sclerosis Awareness Month story; my part for boosting awareness. I generally don’t ask or encourage others to give or work for a particular cause, and particularly not health-related ones. The sad reality is we all have our own monsters. If you’re reading this, you have felt the sting of cancer or heart disease or diabetes or any of the other thousand natural shocks that flesh is heir to. I believe we fight hardest when we fight our own monsters, so encourage you only to do so. But we become stronger through understanding each other’s monsters. And by knowing there are others fighting ours alongside us.

I’m honored to fight alongside Rebecca. I’m humbled by the way she perseveres and by the attitude she maintains. I admire her spirit and her strength, and proud and grateful to be part of her story.

From A New Hope to Rogue One


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Last night I went to see Rogue One again, with the man who took me to see A New Hope the first time, the better part of four decades ago.
 
(Also my mom, who may or may not have been there then, and my wife, brother, and sister-in-law, who are all prequel-age.)
 
I’m thankful he shared it with me then, and I’m thankful he shared it with me now. The older we get, the more and more I recognize and value the seeds he planted in me, and the more grateful I am that he’s my dad.

“She Moves On” – Farewell, Carrie Fisher


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My iTunes this morning randomly played Paul Simon’s “She Moves On.” I made plans to go with my father to see “Rogue One.”
 
I saw the news about Carrie Fisher on Twitter.
 
The song is one of a handful of Simon’s colored by his brief marriage to Fisher, along with “Hearts and Bones” and “Graceland,” arguably among his best. I’d not realized her connection to “She Moves On” until I went looking to see what of his she’d inspired; when you can’t find words, Paul Simon is a good place to start.
 
And I wanted words better than the easy one. It’s easy to say “RIP Princess Leia,” and, sure, I’ll admit that for a child of the ’70s, that’s a big part of how I process the news. It irks me a little when people reduce a celebrity to their biggest or favorite role. It was Leonard Nimoy, not Spock, who died last year. Spock will outlive Nimoy, and, unlike Nimoy, leaves behind no family and friends to mourn him. But I’d be lying if I denied being sad that, in a way, Leia has died — her story remains unfinished, and, while I hope much the bigger story will continue, there is a best version of it that we’ll now never see.
 
My day starts with a song Carrie Fisher didn’t write, it ends with a movie she didn’t work on; and yet both spring from her indelible mark on the world. She touched my day without even doing anything.
 
It’s a little unfair but also undeniable that, despite being a talented and prolific storyteller, she’ll be remembered most for her part in someone else’s story, but it’s a story that she helped shape into one of the most iconic and resonant of the last century, a modern myth. For that, and for so much more, thank you, Carrie Fisher.
 
“When the road bends
And the song ends
She moves on”

In the Wake of Captain Cook


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“Ambition leads me not only farther than any other man has been before me, but as far as I think it possible for man to go.” ― James Cook

From the beginning of my time with NASA’s Space Launch System, I’ve been putting together presentations with some version of this chart — a picture of one of the ships Captain James Cook used in his voyages of exploration.

But as many times as I’ve seen it, today was special.

Cook has been a touchstone for the SLS Program, and has been for NASA for years. Two space shuttles, Discovery and Endeavour*, shared names with ships used by Cook. It’s easy to draw parallels between Cook and the work we’re doing:

Cook’s ships were robust vessels, which allowed him to take the same ships anywhere from the Antarctic to the tropics (and, in other lives, they were merchant ships or military vessels or prison transport). SLS is designed to enable a wide variety of missions, from speeding robotic probes to the outer solar systems to landing humans on Mars.

Cook’s missions were prime examples of how exploration enables science and science enables exploration. As he traversed uncharted reaches, he enabled the study of the transit of Venus, teaching us more about the scale of our solar system. He carried a botanist, Joseph Banks, who brought back a wealth of information. He used the latest ideas about nutrition, that eliminated scurvy deaths on long sea voyages for the first time. It’s very much the NASA vision — we reach for new heights and explore the unknown for the benefit of all humankind.

Cook and others went into the unknown, and because they did, it became known. He travelled new paths, and today, at any time, 50,000 ships are able to transport cargo. Where explorers dare, commerce follows. Already, this is happening in space in low Earth orbit; the voyages of the space shuttle have paved the way for orbital missions by SpaceX and Orbital ATK and Boeing and Sierra Nevada. SLS will take us farther, a blaze a new trail behind it.

That’s why we talk it. So why was today special?

Because today, we shared that chart as part of a presentation at the Reinventing Space conference. Held in London at the Royal Society.

As in, the organization that (along with the British Admiralty) commissioned James Cook to study the transit of Venus, his first voyage of discovery. The same Royal Society presided over by one Joseph Banks, after returning from voyaging with Cook. A telescope used to study the transit of Venus is displayed in the building. The roots of our shared story run deep in this place, and we had the honor of sharing how we are building on that story. It was simultaneously exciting, humbling and inspiring.

A statue of Cook stands within a tenth of a mile from here. His story is remembered, and inspires. I can only hope that the story we shared at this same Royal Society, the story we continue to make a reality, does for exploration and history the same service.

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*I was forwarded a note after publishing this from astronaut Al Worden with a reminder that his Apollo 15 command module was also named for Cook’s Endeavour.

Rocket In The Rocket City


Photos courtesy of NASA

I don’t generally get to work at 6:30 in the morning, but today I made an exception. A test article of the Launch Vehicle Stage Adapter for NASA’s Space Launch System was being raised by crane and placed in the test stand. The LVSA is a giant metal “waffle cone” that will connect the two stages of the rocket. It will soon be joined by test versions of the rocket’s second stage and the adapter for NASA’s Orion Spacecraft.

To be honest, it wasn’t the most dynamic scene in the world. A large metal cone was carefully prepared and slowly moved to the stand. But it’s a start.

This piece will be followed by others, and the test will begin of a 56-foot-tall stack of rocket hardware; NASA’s Marshall Space Flight Center‘s first major test of a large campaign to ensure America’s next great rocket is ready to fly. Next year will see testing of the rocket’s core stage liquid oxygen tank and the 130+-foot-tall hydrogen tank.

This morning was a very real step in a big rocket coming to the Rocket City in a big way. Not a bad way to start your day.
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Ghost Walk/Cemetery Stroll Schedule


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For the next few weeks, Rebecca Hitt and I will be wearing funny things and talking about stuff pretty much every weekend. If you’d like to see us, here’s where we’ll be:

Friday, Oct. 7, I’ll be doing the Huntsville Ghost Walk starting at 6 p.m.*

Saturday, Oct. 8, Rebecca will be doing Saturday Scientist at the U.S. Space & Rocket Center at 10 a.m.. She’ll be doing the Decatur Ghost Walk and I’ll be doing the Huntsville Ghost Walk, both at 6 p.m.

Friday, Oct. 14, I’ll be doing the Huntsville Ghost Walk starting at 6 p.m.

Saturday, Oct. 15, Rebecca will be doing the Decatur Ghost Walk and I’ll be doing the Huntsville Ghost Walk, both at 6 p.m.

Sunday, Oct. 16, we’ll both be doing the Maple Hill Cemetery Stroll from 2-4:30.

Saturday, Oct. 22, Rebecca will be doing the Decatur Ghost Walk at 6 p.m.

Saturday, Oct. 29, Rebecca will be doing the Decatur Ghost Walk at 6 p.m.

(When I’m doing a 6 p.m. Ghost Walk, I may or may not also do an 8:30 p.m. walk depending on crowds.)

For more information on Ghost Walks, visit here: http://huntsvilleghostwalk.com

For more information on the Cemetery Stroll, visit here: http://www.huntsvillepilgrimage.org/cemetery_stroll.html

Review: “Good Christian Sex” by Bromleigh McCleneghan


good-christian-sex-coverRebecca and I have participated in several TLC Book Tours, and when I was offered a free review copy of Bromleigh McCleneghan’s Good Christian Sex, I debated whether to accept it. It’s not exactly my usual topic, but arguably it’s one with as much merit as other books I’ve reviewed, and, honestly, I was a bit intrigued by the title.

The title, perhaps the most-clever part of the book, could go multiple ways. Is it sex for “good Christians”? Is it good sex for Christians? And is that a virtuous or meritorious “good,” as in “I aspire to be a good person” or “I aspire to be a good guitar player”? The answer, as it turns out, is that it’s morally good sex, so those expecting how-to will be disappointed. It’s also probably more morally good sex for Christians, moreso than morally good Christian sex.

McCleneghan tells a story in the introduction that provides context for the whole book. She’s in college, and a friend calls to ask her if she (the friend) should have sex with her (the friend’s) boyfriend. The friend, it turns out, was asking McCleneghan because she (McCleneghan) was a pastor’s kid. Raised in a church environment that taught nothing wrong about premarital sex, McCleneghan responded, do you want to?

This book, then, is McCleneghan’s longer response to that and similar questions — reasoned and sourced and organized and written authoritatively — now that she is herself a pastor. It’s a question that deserves such an answer; McCleneghan’s will likely only cause people to take away from the book the things they bring to it. For those wanting spiritual peace of mind about a less rigid view of Christian sex, McCleneghan offers a discourse, signed by a pastor, granting it. Those with a more conservative view on such topics, however, are unlikely to change their mind because of anything McCleneghan writes here.

Personally, I think there is a case to be made that some churches today do skew overly conservative in their interpretation of sex-related scripture, and I believe that there is plenty of room for a open-minded discussion of what the Bible says about sex. This book, however, is not that.

God is a supporting cast member who comes and goes throughout Good Christian Sex depending on how much he’s needed at the moment. Scriptures that deal with sex make rare and brief cameos. Other scripture appears more often, cited as inspiration when it supports a point McCleneghan wants to make, and eyed suspiciously when it doesn’t align adequately with her modern cultural norms. (‘The Book of Genesis is not great for a lot of things,” opines Pastor McCleneghan.) Better inspiration for today’s Christians can be found here in The LEGO Movie and Ani DiFranco.

In debating whether to receive the review copy, I’d rationalized to myself that if it was going to require a discussion of sex too cringeworthy for my blog, I’d cop out and talk instead about what Christian sex tells us about God. This book provides little fodder for that conversation as well.

It’s not impossible to imagine that the friend who called McCleneghan with the question that informed this book so many years ago wasn’t really looking so much for theological discourse as license. This book allows those today with the same or similar desires to come to McCleneghan, and receive the same dispensation.


Good Christian Sex coverAbout Good Christian Sex

  • Paperback: 256 pages

  • Publisher: HarperOne (July 5, 2016)

    Many Christians in this country hear a singular ethic from their faith communities – absolute abstinence outside of marriage, and no exceptions – regarding abortion, birth control, and being gay. As a result of this inflexible approach, many simply disengage, disconnecting their sex lives from their lives of faith.

    In Good Christian Sex: Why Chastity Isn’t the Only Option – And Other Things the Bible Says About Sex, Pastor Bromleigh McCleneghan grapples with the enduring conflict of Christianity and sex. She combines personal anecdotes with theological research, and uses a measured, non-judgmental, and sometimes humorous†tone to make her case. She lays out theological and ethical questions that arise in the average, everyday†experience of adult sexuality, and informs readers through these discussions in a clear and engaging way. In this much needed book, she:

    • Addresses the theological sense of pleasure.
    • Encourages people to think about virginity and sexual initiation as complex things.
    • Discusses modesty, nudity, and what it means to be vulnerable with other people.
    • Reflects on whether or not single Christians have to be celibate.
    • Considers how to recognize whether itís time to end a relationship, or make a go of it.

    Pastor McCleneghan concludes that it is possible to bridge the gap between sin and human nature, providing†hope where confusion, conflict or frustration had been, and lifting the veil of shame felt by many religious†people. Good Christian Sex†provides a much needed perspective that will liberate Christians to finally†express their sexuality in realistic ways that are aligned with their faith.

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    Bromleigh McCleneghan APAbout Bromleigh McCleneghan

    Bromleigh McCleneghan is Associate Pastor at Union Church of Hinsdale in suburban Chicago. She is the co-author of Hopes and Fears: Everyday Theology for New Parents and Other Tired, Anxious People, and her essays and articles have been published in The Christian Century, Ministry Matters, Fideliaís Sisters, Circuit Rider, Criterion, and the website of The United Methodist Church. More at www.bromleighm.com. Connect with her on Twitter and Facebook.