Brain on Fire: My Month of Madness

I just finished reading Brain on Fire: My Month of Madness which is a first-hand account of a young woman’s terrifying experience of an autoimmune disorder that attacks her brain. She is overtaken by seizures, hallucination, paranoia, and the realization that she is going mad.

Susannah Cahalan’s memoir raises issues around misdiagnosed illnesses, the importance of personal advocacy and the need for a second opinion. She shows us the unconditional love of a supportive network of family and friends, gratitude for medical advances and the sobering reality that there is still so much we don’t know about why and how our bodies fail us. Callahan says:

[My illness] is a good reminder about how fragile our hold on sanity and health is and how much we are at the utter whim of our Brutus bodies, which will inevitably, one day, turn on us for good. I am a prisoner, as we all are. And with that realization comes an aching sense of vulnerability.

This is a quick read that invites us to be sympathetic to all who struggle to find diagnoses for their mental and/or physical suffering. Every member of my book club, myself included, agreed that this is a book worth recommending to others.

Has anyone else read this? What did you think?

Travel Photos: Bring Your Baby to neW{y}ORK Week

Last month, James and I had several work reasons to be in New York so we thought we’d see what would happen if we brought five-month-old Jude along with us. It’s certainly work to bring a baby in tow, but we had a lot of fun together as a family. Here are some photos of our 5-day trip…

The perks of two parents being Platinum on Delta? “Free” floor space to kick around in. You’re welcome, Jude.

Early lunch in New Jersey at Van Gogh’s Ear Cafe. Cool vibe, yummy food. James & I recommend the Brie + Apple Pizza or the Foccacia Pizza Salad.

Jude recommends Sophie the Giraffe.

We went on to Rockaway, NJ where Blood:Water and I presented at this year’s Collyde Summit. The theme was “Overcome.” I shared about what it looks like to stay with the commitment to justice even on days when you just don’t feel like it. (Jude hung in the back with James).

Here’s my colleague, Michael, introducing our Give.Hope.Kits for churches to use this Christmas to help bring clean water through biosand filters.

From there, we took the train into New York. Despite sticking to our carry-ons only policy, it was still cumbersome to get everything into the packed train and then cram our way through the subways…

… but we eventually made it to our favorite little hotel just outside the city.

Obligatory walk to our Venezuelan favorite, Arepas Cafe. Black beans, plantains, avocado, yum.

Jude was spent. Note how he fell asleep mid-teething toy.

The next morning, we went to James’ old church and then visited our Charity: Water friends, Scott & Vik Harrison, so we could meet each other’s babies.

We swapped stories about adjustment into parenthood amidst high-demand & travel-heavy jobs. We marveled at how our baby boys have turned our priorities upside down, or right side up – in such a good way.

James went on to some pre-meetings for the Clinton Global Initiative. Jude and I hung out at the hotel and cheered on the 49ers, despite losing to the Cardinals. (Colin Kaepernick is the one with the football; Jude is the one with the musical whale).

Dinner with Uncle Milton and other members of the Lwala Community Alliance.

The next morning, James and I dropped Jude off with a babysitter at a subway corner where they walked through the park and along the river. We ran off to attend the Social Good Summit hosted by Mashable, the UN Foundation and the Bill & Melinda Gates Foundation.

The main theme was focused on innovations and hopes for the world we envision for 2030. Several influencers spoke about their vision. Here are NY Times’ Nick Kristof and Sheryl Wu Dunn sharing about how actions speak louder than hashtags. (Please note the irony in this photo).

My BFF Melinda Gates was on stage discussing her Mothers & Babies initiative while TV show, Nashville’s Connie Britton finished speaking on women’s rights, as a Goodwill Ambassador to the UN. (Making us proud, Connie!).

Here was my stated hope for #2030NOW.

(And, that MOTHERS OF INFANTS GET MORE SLEEP. #TiredEyes)

James took meetings at the Clinton Global Initiative while Jude and I people-watched from the Sheraton lobby. The place was packed with heads of state, philanthropists, celebrities, NGO leaders and the press. It was a strange experience to be on the mommy/wife side of the equation.

Actually, it was a stressful experience because Jude needed to both nurse and be changed, and I had been needing to go to the bathroom for the last several hours, but didn’t know how to manage it all in a stall of a crowded bathroom, all on my own. (How do New York mamas do this?!?).

Enter my dear friend, Ruthie McGinn, an immediate answer to a hasty, “Lord, I can’t hold any of it any longer” kind of prayer. Ruthie is Special Assistant to (my mentor) Gary Haugen at International Justice Mission, and she was in the lobby waiting to prep Gary for his meeting. She kindly became Most Special Assistant to Stressed Mama and Crying Baby.

Ruthie gave me the key to her hotel room, and in the madness of it all, Jude and I found a bathroom and a haven.

And an amazing view.

The next day, James went on to more CGI meetings while I participated in a maternal & child health gathering hosted by Johnson & Johnson. (We met another babysitter, this time at a Barnes & Noble, where she played with Jude in the children’s book section).

Nobel Peace Prize Winner (and Vanderbilt grad), Dr. Muhammad Yunus: “It goes without saying, if you’re poor, you’re poor in health. If you’re a poor woman, it’s the worst.”

My new Nigerian hero, Toyin Saraki: “As a pregnant woman, you cannot reach out for the help you need if you don’t know what that help is. Midwives in Africa are the key to providing that education, to allowing a pregnant woman to have accurate info on what will keep her and her baby safe. Lack of access to this information is simply another form of poverty.”

I’m so inspired to continue to advocate for safe mamas and babies through our maternal and child health work at Blood:Water.

I rushed off to meet the babysitter, but we both got stuck on opposite sides of a 10-minute “freeze.”

Meaning, President Obama was about to pass through (he was attending the United Nations General Assembly), so no one was allowed to cross streets or drive through a blocked off radius. I stood stuck in a frustrated human traffic jam for ten minutes. (New Yorkers are not accustomed to standing around).

Once cleared, Jude and I met up with James in Central Park between his meetings.

 And then Jude and I had a final date at Le Pain Quotidien before heading to the airport. We found a corner bench. Amazing avocado toast for me…

…and, Sophie the Giraffe for Jude.

It took extra coordination and energy to bring Jude along, but he was great company and he certainly added more joy and adventure to our traveling days.

- See more at: http://jenanardella.com/2014/10/travel-photos-bring-your-baby-to-newyork-week/#sthash.MxU9tLkF.dpuf

Confessions of a New Working Mom {Part 2}

Need I say more?

Life is a Box.

My days, lately, have been swirling with early alarm clocks, half-eaten breakfasts, lost keys, dropped toys on the front porch, coffee in tumblers, hours full of emails, meetings, phone calls, attempts of squeezing long thoughts into short increments of time, spousal communication by way of texts, one precious hour of play and bath time before bedtime, and repeat dinners of pasta and sauce. It's been filled with stacks of junk mail and unpaid bills, watching missed NFL games in fast-forward mode, forgotten birthdays and anniversaries, unreturned messages from friends who miss us, short and incomplete phone conversations with family from afar, habitual sifting through dirty laundry to find something reusable for the next day, and falling dead asleep on the couch next to James before Jon Stewart even begins. (And those are on days when I don't travel).

James and I asked our priest, Becca, how she and her family have been able to manage a life full of dual careers, three sons, significant mission responsibilities and community.

This is what she said:

Life is a box.

The things that fill your life are balloons.

Only so many balloons can fit into the box.

You can have a lot of little balloons. Or a few large balloons.

But the box stays the same size.

So, choose your balloons wisely.

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Becca's point is, the box doesn't get bigger.

I thought that our box would be different. That it would have some trap door or special stretchy expansion. But our box is the same as everyone else's.

As James and I rail against the limitation, and as our balloons lodge themselves against one other, we are forced to sort through the good and lasting lessons about what really matters in this season of our lives.

Otherwise, the balloons will pop.

We have put this truth up on our fridge as we consider how to live a sustainable and flourishing life together.

My prayer is that all of us can find our way to a box with the right balloons (whether through inflation, deflation, or removal), and that those remaining balloons will have the space to float.

May we all choose our balloons wisely.

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ps. I wrote about these challenges on a blog called Plywood People. You can read it here.

Ripple Effect

Have you ever found yourself Googling or Facebook searching for someone from your past life? For someone you once knew, but as time as passed, you knew not where to find them? Twelve years ago, I sat in a small room of my college commons and heard the personal stories of two individuals who were HIV positive. One was a man named Bill whose body continued to betray him from the intense regimens of medication (Ironically, the side effects of the medications were as unbearable as the symptoms themselves). And the other was a woman named Julie who shared what it was like to become HIV positive from a blood transfusion after the birth of her daughter.

At the time, I had been studying the effects of HIV on the immune system in my medical microbiology class, but this was the first time I had heard from people who were living through it.

Their stories were powerful to me. They were so human, so broken, so honest, so real. The science of the virus morphed into the stories of people. I remember, in particular, the audacity with which Julie spoke. She had said things like,

"It doesn't matter how I contracted HIV, even though people see my circumstance as more innocent than that of others. I don't want to be treated differently. We are all in it together." 

and

"I had 3 children, and I was told I would only have five years to live. But I decided I wasn't going to live like I was dying. I was going to live it fully. "

As a college student searching for purpose, Julie and Bill's stories were the spark that sent me finding stories of other HIV positive people around the globe. It's what led me to Blood:Water.

I have often wondered about Bill and Julie. I mostly wondered if they were still alive. And a year ago, instead of wondering, I did as most of us do when we wonder where in the world someone might be. I took my questions to Google. I grabbed my college notebook to find the last names of Bill and Julie (yes, I still have my college notebooks - ultimate nerdom, I know), and this is what I found:

Bill: The only thing that came up was that he was a member of the Spokane HIV/AIDS Speakers Bureau in Spokane. There was no clear date to ascertain whether or not he was still speaking, or still alive. My search ended there.

Julie: She was also listed in the Spokane HIV/AIDS Speakers Bureau. But different than Bill, there was another link with her name in it - an article from Spokane's Inlander. It was confusing at first because the article was about a guy who was part of a Seattle-based hip hop duo called Macklemore & Ryan Lewis. (Before you all go judge me about not knowing who they were, this was before they had become a national sensation. Okay, you're right. I probably still wouldn't have known).

As I read through the story, it became clear that the Julie I was looking for was Ryan Lewis' mom. And she was alive. And was continuing to relentlessly advocate for HIV/AIDS issues. In an act of serendipity, the article revealed that I already knew Julie's husband, Scott, through our nonprofit circles. I found an old email from him, and I reached out.

Last week, I went to dinner with Julie and Scott in Seattle. I shared with Julie how the courage of her story more than a decade ago was a significant catalyst in my life. That her testimony compelled me to find the testimonies of others.

That the ripple effect meant more than 60,000 HIV positive Africans with a second chance at life and flourishing - and nearly a million people in AIDS-affected communities with clean water. That in the moments when you just don't know if your story means anything past sympathy or inspiration, it can mean so much more.

Take the time to circle back to those who've inspired you - and thank them. And pay attention to the way your own life and story can have a ripple effect beyond your wildest imagination.

ps. When I showed Julie the notebook, I asked about Bill. He, too, is alive. I can't wait to go meet him and thank him, too.

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To learn more about Julie's work, go here.

Macklemore & Ryan Lewis have partnered with Julie in the 30/30 Project.

Seattle Meets

In a 24-hour visit to Seattle, I had the opportunity to meet with great friends & supporters in some fun places around the city. All five restaurants were new to me. Here's a peek into some fun Seattle places to meet up.

Agua Verde [University District]

Amazing food AND kayak rentals! I only had time to partake in the food part, but I sure enjoyed sitting by the water in the sunshine.

Kakao: Chocolate + Coffee + Community [South Lake Union]

A coffee shop by week and church by weekend, Kakao + Chocolate is in the exciting neighborhood of South Lake Union. Sipping chocolate and Italian sodas. Need I say more?

Little Water Cantina [Eastlake/Lake Union]

Outdoor seating along the water with a stunning sunset. Margaritas, guacamole, empanadas, yum.

909 Coffee & Wine [Burien]

In the town of Burien, this little place calls itself a cozy, neighborhood gathering space. It truly is. Their breakfasts are fabulous. I had the scramble with black beans.

13 COINS [SeaTac]

A really random location unless you need a place to meet before a flight (which is exactly what we did). Standard bar food but better because it's done PNW style. This place is open 24 hours.

So, there you have it. What other meet up places should I try next time?

Let Your Life Surprise You

  This week, I received an email from one of my best friends, Autumn, who is living and working in South Sudan amidst one of today's most pressing humanitarian crises. Refugee camps are overpopulated with men, women and children who lack clean water, sanitation, and sufficient nutrition - causing outbreaks of cholera, hepatitis and impending famine. And outside the camps, violence continues with killings in hospitals, churches and mass rape.

And my sweet, dear Autumn is on the front lines doing her part to address the immediate needs of our South Sudanese brothers and sisters, despite the horrific conditions.

This was her mode of transportation from a recent visit into the field.

But there's something you should know about Autumn: Humanitarian work was not her original career path. It wasn't even her secondary or tertiary path.

In our early twenties when we lived together, Autumn worked for a music label, a recording studio, and even as a makeup artist. While she gleaned great life experience, she continued to be dissatisfied with how she was spending her days.

This is us, with our other roommate Amy (whose incredible story I will tell you about later).

Autumn continued to ask the good and hard questions about vocation and calling. And then she took brave steps to actualize her convictions to be in proximity with the poor.

She left Nashville for a job with a social business in California, applied to grad school at London School of Economics, began internships with major NGOs in the UK and has found her way to coordinating emergency responses to water, sanitation and hygiene in South Sudan's refugee camps.

Her most recent email stated:

"Most days I feel completely inadequate to lead the response efforts in such a crucial way as this. Other days I feel blessed that I get to be here in this moment, and there is nowhere else I would rather be but be in the midst of all that is South Sudan. I feel like when I'm here I'm seeing a picture of love, suffering and life that most people don't, and I'm so challenged and changed by it daily." 

I am so proud of Autumn, for being courageous and persistent. For listening to her heart and following that calling. For serving in a moment in time even when the rest of the world's tragedies have overshadowed the very real and horrific one that she is living in. And for choosing hope even when everything in her days tries to convince her otherwise.

As I remember our years together in our Nashville apartment filled with angst and uncertainty about calling and direction, I don't think Autumn could have imagined that this is where she would be today.

Don't count yourself out of the tugging convictions within. Listen to them, seek them out. And let your life surprise you.

(This is in one of the camps that have flooded. And because of open defecation and poor sanitation services, she's literally knee deep in it. With a smile and all.)

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More information about the organizations Autumn has been working for and how to help, go here and here.

(All photos courtesy of Autumn Petersen)