out into the real world

I entered the real world again yesterday after a two-hour bus ride to Boston. First on my agenda was to get a shine on my scuffed boots so they’d look nice enough to wear later with my black silk dress. His name was Edward, and as he polished, brushed and buffed my boots amongst the hubbub of Boston's South Station we talked about Lewiston, Maine, friends, children, grandchildren and epilepsy. Sorrow crept over his face when I told him about Calvin, who can’t talk, can’t walk by himself and still wears diapers though he is almost nine years old. I explained that all that didn’t matter compared with the living nightmare of seizures, drugs and their side effects. He said with sympathy, perhaps even empathy, “I know how ‘tis,” and I understood him to mean he knew the pains that come with parenthood. I stepped down off the leather bench, shook his hand and told him I’d be back next time with a different pair of boots for him to shine. He smiled and waved.

In the subway, two Berkeley School of Music students played fiddles with the deft and dexterity that belied their tussled hair, skinny jeans and worn-out canvas sneakers. I tossed what change I had into their open case.

At Harvard Square I ambled down the streets, cold hands stuffed into my pockets, an aching shoulder from the weight of one heavy bag. It felt good to be in the “mix” again—people of all different colors and walks of life. I snuck into a little Italian deli to purchase a split of Champagne for my hosts, Susan and David Axelrod, whose daughter Lauren has epilepsy. To show my thanks I’d have it delivered to their room in the hotel. Then I resumed my hunt for a cup of coffee and a piece of cheesecake, which I never found, so I settled on a designer cupcake that was even too sweet for me. I bought an extra one that I gifted to a homeless man standing on the sidewalk holding a bent cardboard sign. As I approached I met his friendly eyes and said, “I got this just for you,” and he gave me a big, warm scruffy smile. “It’s very sweet,” I cautioned, and he told me that was just what he needed.

For the first time in a long time I felt vigorously alive. I breathed deeply the cold air, closed my eyes to drown myself in the sounds and smells of the city, a place where one can truly embrace humanity with all of its blemishes, shortcomings, wonder, generosity, diversity. In the twilight I exhaled with a satisfied sigh and made my way along the river to the hotel.

Last night at the CURE epilepsy benefit at Fenway Park—the reason I’d come to Boston—I found myself in an a diametrically opposed circumstance from my afternoon walking the streets. I stood elbow to elbow with hundreds of donors. They each payed $1000 for a seat at a table dining on tuna tartar, crispy wonton and the biggest portion of filet mignon I’ve ever seen resting on a delicious bed of sautéed spinach and scalloped turnips, all cooked to perfection. At the cocktail reception I hugged my host and friend Susan and later squeaked through the crowd to introduce myself to her husband, David. “Can I hug you?” I then asked, and he kindly obliged before holding my hand and telling me he was an avid reader of my blog. In a soft, round voice he went on to say how he admired my style of writing. I blushed. At that moment, Senator-elect Elizabeth Warren appeared and David introduced us. In my nervousness I called her Margaret [my default position because of Margaret Warren from my beloved PBS News Hour (later my husband reminded me that her name is Margaret Warner, so I am totally messed up.)] After we shook hands I unabashedly gave her my card, the one with the photo of Calvin and I on one side, the blog address on the other. Upon hearing about Calvin, Elizabeth became animated—impassioned—about the need for epilepsy research and how much more must be done. I nodded and smiled in great agreement, congratulated her on her recent win, said so long to them both then gently slid away through the handsome throng of dark suits and little black dresses.

And I made some other new friends: Leanne, a mother of a 22 year old son with severe epilepsy that doesn't respond to medication, her BFF Tammy who came along for support, my dinner companions Abby, Stephanie, Kim, Jackie, Ernie, Cathleen and Wendy, and two handsome young men who I didn’t get the chance to speak with, sons of the event co-hosts, Anne Finucane & Mike Barnicle whose daughter, Julia, has epilepsy.

A highlight of the event—and there were many—was a speech made by Carol Fulp, a beautiful, brilliant, successful woman with epilepsy who lived with it for fifty years before telling anyone because of its deeply rooted stigma. Her speech made my skin tingle with love and admiration for a person facing much adversity in life, not only as an African American woman, but one bearing—then overcoming—the secret burden of her epilepsy.

I closed the night with a few photos, some good laughs, several heart-felt hugs with Calvin’s neurologist, Elizabeth Thiele, who I absolutely adore, more hugs for Susan and for David then off with my new homies, Leanne and Tammy, whose driver Georgie took us to my hotel for a nightcap. I closed my eyes around midnight, just after an excellent segment of Charlie Rose interviewing Andrew Solomon about his new book Far From the Tree followed by a poignant discussion about racism and mass incarceration in the United States. Must. Stay. Awake.

What I said to David Axelrod is true, I don't get out much. But last night brought into sharp focus what my husband tells me, that getting out into the real world is something I most definitely need to do more of. And with any luck, I will.


  1. Awesome. Really.great.

    1. What a fun evening! Any time you can feed cup cakes to Hobo's to kick off the event and end up chatting with EW, is a night to remember. Nice writing and thanks for sharing.

  2. LOVE CURE!!! And Elizabeth Warren! And Elizabeth Thiele! Sounds like a great night. I volunteered at the CURE benefit in Chicago last summer (while visiting a great aunt) and was absolutely blown away by their organization (seemed like it had both the heart of an NGO and the efficiency of corporate businesses). Also love their creativity! I told the event coordinator I would be happy to speak at events in NYC during the school year and Boston during the summer--my two homes. I got an email last month asking if I would tell my story and give a thank you at a bar-tending competition at a lesbian bar in NY! So f*cking cool! Unfortunately I wasn't able to oblige, as I'm in Ecuador for the semester. I'm really glad to hear about Elizabeth Warren's response! When I sent an email to Congressman Neil (from Western Mass) about supporting the RAISE bill and about how under-appreciated epilepsy was, I got a canned response back listing all the millions of diseases he supported--but not epilepsy. I voted for the other dem running this election haha. Thanks for representing in Boston--wish I could have been there! PS If you find yourself looking for a coffee by Fenway in the future, Wired Puppy on Newbury St. is excellent and right down the street :)