Home/Office

I’ve been working away in my new home office (ex-nursery) on Saturdays over the past couple months, getting a lot done on my grant.  I’ve had a paper accepted, another one submitted and in review, twenty-two interviews done, and over 80,000 words written since January 1.  It’s a cozy little room, with faux wood desk, faux wood filing cabinets, and real drive and ambition powering the place.  Everything’s here, now, from laptop to monitor to printer, and even a pair of guppies swimming in a little aquarium in the corner.

But do you know what I like the most about my home/office?  When the lightning flashes and thunder roars late at night, two little blond boys can toddle from their room next door, take my hand, and lead me back to their room for cuddles to help them go back to sleep.  Any. time. they need me.

G’night, y’all.  They need me.

What did you do to your arm?

Revisited.

I’ve spent the last two days in meetings where I’ve seen an awful lot of old friends, new colleagues, and friends I just haven’t met yet.  (Yes, I am that corny.  Now. When I used to have a hard-ass job?  Not so much.)  Nearly everyone has asked about my arm.  My wrist.  That big wrap on my arm.

But you know what?  You guys would have been proud of me.  I didn’t duck the question.  I didn’t apologize, or minimize.  I simply said. “It’s just a side effect.  A complication of the cancer I had last year.”  Everyone, to a man, has had a sympathetic follow-up.  Because I’ve tried it out on you guys, I’m now able to say, “It’s okay.  I’m in remission now.  But it makes me really glad to be here.”  And then we move on to discuss the work of the day.

It’s good.  Really good.

And in this context?  People are interested in my ideas … and sharing their ideas … and cancer seems so far away from my life.

When I’m not here…

… it means I’m writing like a madwoman or outside playing with my children.

It’s been a good week, y’all. The NASA book? Is up to 50,000 words already. And the kids? Happy, healthy, and making their mama laugh along as they explore their world. “See, mama, see?” So I’m there, in the moment, stopping, watching, catching the balls that they throw and throwing them right back. In the moment. Lymphedema therapy has begun again, and I’m hopeful this time that it will work, and we can reduce the swelling in my hand, arm, and trunk to make them more usable again. The Smithsonian Channel and the West Coast American Cancer Society bloggers both featured me this week … and in the first interview? Absolutely not one mention of cancer. Very, very cool.

(New reviews of books and things are up over at Review Planet. Clearly, I wrote them last week, before the weather turned nice and I got inspired again.

Twittering Kepler

Wow.

Y’all know I adore social media and the sense of community it can create.  You know how much it has meant to me in my cancer fight and my quest to parent these little boys.  You probably even know that there were days (weeks?) last year when twitter, blogging, and the like were my only link to the world outside my family, when I was so immune compromised from the chemo.

What I think I didn’t fully appreciate before was the potential for instant community building using social media.

Last week, I decided to go to the launch of NASA’s newest spacecraft, Kepler.  My family and I had been hoping to go for many months, actually, and I actually had a connection to the mission from years back.  [I was part of the NASA Headquarters management team, when the mission was just beginning development.]  I’ve been looking forward to it for a long, long time.

I even had a VIP invitation, with my name on it, and they were expecting me at KSC.

But then, a couple weeks ago my lymphedema flared up.  We thought that daily treatment and wraps would get it under control, but, as it turns out, I’m allergic to the wraps.  Every time we wrap my arm up now, it swells larger in reaction to the foam, or the padding, or the hydrating lotion, or something, and we’re still searching for an answer.  I had decided to suck it up and make the drive anyway (flying? very bad for lymphedema, especially if the wrap isn’t right), until …

105 degree fevers struck our house.

And suddenly, instead of driving down to Florida to support the team and see the launch, I was rocking sick little boys to sleep, soaking them in tepid baths, and making strawberry smoothies to tempt their appetites.

And somehow I forgot all about the launch.

But tonight, Widget, WhyDaddy, and I cuddled up in the great big bed and watched the launch prep on our laptop screen.  We explained (a bit of) what the countdown preparations entailed, pointed out the guys in mission control, and answered questions as he thought of them.  We also held hands and breaths as we waited for the countdown to reach one hour, one minute, and then … one.

It was a beautiful launch.

It would have been enough just to watch it with my little family, snug as we were, but at the last I got the idea, as did hundreds (thousands?) of other people, to watch it with friends and strangers on twitter.  We logged on and twittered it live, commenting along the way and supporting the team.  The twitters were fast and furious, as everyone, from science geeks to media types to Florida locals, popped in with a word of support and a vicarious thrill:  the Kepler spacecraft was finally going to space.

The twitterstream for #kepler is pretty amazing.  Pop over and check it out if you’re interested — it went from a trickle to a deluge as we approached launch, and the diversity of tweeps was pretty amazing; women and men  from all over the world were excited to see something that we built — we humans built! — launched into space, escaping the surly bonds of earth … again.

Maybe it’s the romantic in me, but I do love a spacecraft launch.  There’s so much … possibility there.  As a scientist, I am eagerly anticipating the observations and first announcements of early results (months from now).  As a mom, I am thrilled beyond belief to have witnessed this exciting moment with my young son.  And as a citizen of this planet (corny as it may sound), I am hopeful again that we can solve the pressing problems of our time.

After all, we have reached the moon and sent spacecraft out beyond the very edge of the solar system.  We’ve built the internet and allowed people all over the globe to share the moment of launch, not just with telescopes and binoculars, but with video, audio, and instant feedback to the team and and around the world. We’re connecting in ways unimaginable just 20 years ago.

Surely, surely, with this kind of technology and this kind of drive, we can defeat poverty, hunger, fear … and disease.

The Kepler mission was originally selected by NASA’s Discovery Program as the tenth in a series of low-cost, short-development missions led by a single principal investigator and competitively selected by NASA through the AO process. Kepler is searching for earth-like planets around other stars.

Access

Things had been going so well. I’m in remission, my kids are happy, and I was out of the house today, doing the work I love. Things went great, all day … until I walked into a building downtown and was verbally accosted.

I try not to let it affect me, but, let’s face it, I have a physical disability. It’s called lymphedema, and when my arm and core swell, I have to start treatment again. I go in for daily physical therapy and walk out wearing a giant wrap on my arm that takes 8 bandages, rolls of gauze, sheets of cotton, and several pieces of compressible foam to apply constant pressure on my arm, hand, and fingers, reducing the swelling, eventually, to a manageable size. I can’t grip a thing, including my mouse, which makes typing darn difficult. But the problem here wasn’t with my work. It wasn’t with my typing. It wasn’t even about feeling self conscious anymore.

It was about access. Pure and simple. Because when I walked in the building at 500 E Street S.W., the security guard stopped me, saying, “I told you before. You can’t use that door.”

“What?” First of all, this is the first I’m hearing this. Second of all, why not?

“You have to come in the middle doors,” he admonished me. “You can’t come in that door.”

“I don’t understand. That’s the handicap door,” I said, baffled.

“I can’t open the regular doors.” I said.

“I have a handicap.” I said.

He just stared ahead and continued taking me to task.

As I cleared the metal detector, I gathered my courage and spoke up, addresssing both security guards this time. “They’re handicap doors. I have a handicap.”

No response. I went upstairs and dropped off some files, and came back down. I was spitting mad. It threatened to ruin my trip home. But I thought about what my blogfriend Liz would say about this, and I decided to stand my ground.

I asked to see his supervisor.

I waited.

I waited.

I waited, having a difficult time standing in the stone foyer.

After 20 minutes, the security chief appeared. I told him what happened. I told him that I have a handicap. I have had cancer, and I don’t have much strength in my arms and back to pull heavy doors like that open anymore. I pointed to the sign on the door that said “For emergency and handicap use only.” I mentioned that I have a handicap.

Those doors are there for a reason. And you know what? People with disabilities shouldn’t have to go around proving it before they’re allowed to use reasonable accomodations.

Why did I have to tell this stranger that I have had cancer? Why did I have to admit out loud, “I have a handicap,’” in order to be able to enter the building and do my work? I don’t know. But I think it begins with ignorance.

Friends, if someone is using disability accomodations, and you’re not sure they should, please consider the fact that not all disabilities are visible, and that they are not constant over a person’s lifetime either.

Just two years ago, I was healthy.  Just like you.