Saturday, October 23, 2010

New Video from BDSRA

Please take a few minutes to watch this new video from the Batten Disease Support and Research Association (BDSRA), filmed at the organization's annual conference in Chicago in August 2010. It's a wonderful collection of perspectives from families and other individuals deeply affected by Batten disease. I'm featured on the video starting around the 4:30 minute mark. Thank you so much to our friends at BDSRA for creating this great tool in the fight against Batten disease and for allowing me to tell my story. Remember, you can help us fight this tragic disease by spreading the word and also by making a donation at Thank you for your support!

The Batten Journey from On Scene Digital Printing on Vimeo.

Wednesday, October 13, 2010

What Next?

In 1984, Reynolds Price - acclaimed writer, Rhodes Scholar, Milton expert, Duke University professor of English and my third cousin - learned he had cancer: a 10-inch-long, malignant tumor wrapped around his spine that he came to call 'the eel.'

Imagine getting that diagnosis today. 26 years ago, the eel was a death sentence. And yet 26 years later, Reynolds is still writing books and teaching his usual three courses at Duke. Seven years ago, when I was 21, I drove 10 minutes from my Chapel Hill apartment to Reynolds' house in the woods. We spent the afternoon talking about spirituality, Scotch, ginger molasses cookies (inspired by the Foster's Market molasses cookies I'd brought to share) and even a little writing. That day still conjures up the clearest of pictures and deep-down feelings whenever it crosses my mind.

I'm attending a great class with my mom at our church on Wednesday evenings. It focuses on spirituality in Reynolds' works. Tonight, we discussed A Whole New Life: An Illness and a Healing. This extraordinary book is the story of Reynolds' agonizing illness and astounding survival. It was published in 1994, and the first time I read it as a college student, I had no inkling of the sadistic disease lurking in my little sister's cells. I think that I will read it again. On page 185 of the paperback edition, Reynolds makes a profound statement. At the time of my first reading, my life was free from the kind of pain and suffering that I know all too well these days. In fact, when our teacher at church, the poet/novelist Tony Abbott, brought the passage to our attention in tonight's class, I read it with virgin eyes, as though I had never encountered it before:

"If belief in an ultimately benign creator who notices his creatures is available to you, you may want to try at first to focus your will on the absolute first ground-level question to ask him, her or faceless it. Again, that's not "Why me?" but "What next?"

In the early days following Taylor's diagnosis, I often plainly asked God all possible variations of that question:
  • "Why her?"
  • "Why me?"
  • "Why us?"
I was on the verge of losing my faith entirely in the wake of Batten's entrance into our lives when I suddenly realized that I was asking the wrong question. Whether or not there was a why, I certainly wasn't doing anyone any good, least of all Taylor, by questioning the sober reality of her defective CLN1 gene. It was on that day that I decided the only way to fight back was to start figuring out how to play the cards in my hand. Otherwise, I might as well have thrown all my chips on the table and left the game.

Here is another passage from that same page that I simply love:

"My own luck here was long prepared, from early childhood; but as with all sorts of invisible luck, there have been forced treks these past ten years when I all but quit and begged to die. Even then though I'd try to recall a passage of daunting eloquence in the thirtieth chapter of the Book of Deuteronomy where the baffling God of Jews and Christians says

'I call Heaven and Earth to witness against you today that I have set life and death in front of you, blessing and curse. Therefore choose life so that you and your seed may last to love the Lord your God....'"

Though she hasn't read Reynolds' book, Taylor gets it. She's always gotten it. T greets each new day and bids it goodnight choosing life, no matter how tough things are between sunrise and sunset. A life with Batten disease surely isn't one we would have chosen for her, nor is it one she would have chosen for herself had she been given a choice of cards. But they're her cards, and ours because we love her. And because I love her, I choose life for her, too. And here's a question for Batten disease: you gave us a good fight today. We fought right back. We're still playing the game. So what next?

Tuesday, October 5, 2010

The Girl Who Escaped in the Middle of the Night

My piano teacher of many years, Dzidra Reimanis, called me today. I sent her a note yesterday to check in on her and also share the news that I now have a grand piano and plan on playing regularly again. This afternoon, not 36 hours after I put the envelope in my mailbox, my cell phone rang. I was shocked to learn that Dzidra is 83 years old (but still teaching full-time).

I started taking lessons from Dzidra before my feet reached the floor.

Dzidra was always ageless in my eyes. The day my mother (a piano teacher herself) took me to Dzidra's house for my first-ever piano lesson, I was four years old and still learning to read - so I guess you could say I learned my ABCs, treble clef and bass clef all at the same time. Over the 14-odd years that I went to that house, growing and changing constantly and in the later years still wearing soccer shorts and shinguards from practice and driving my own car, she was always the same Dzidra. Dzidra left Latvia, a tiny country on the Baltic Sea in northern Europe, in the middle of the night as a young girl. I discovered her origins one day when I asked her what the letters 'RIGA' on her car license plate  meant. Dzidra explained that Riga is the capital of Latvia. I was always fascinated with Dzidra's story after that day. I was proud of the fact that I was one of the only students who always spelled her name correctly on competition entry forms. And as much as I hated practicing the piano at home, I was in awe of Dzidra's love for the art of playing it and teaching it. And it is an art. When you walk in Dzidra's back door, you enter an open room with a couch, coffee table, shelf and two Steinway grands standing back to back - one for students, and one for Dzidra.

I have been back in my hometown since the day I graduated from UNC. I live 10 minutes away from Dzidra and work two minutes away from her. And yet I haven't been to see her at all in the past six years. After talking to her for a few fleeting minutes this afternoon, I wondered why. That's why I'm going to see her first thing in the morning on my way to the office.

Think about the people who've touched you in some way. Do you get to see them everyday? How often do you talk to them? Maybe you live under the same roof and drink coffee at the same table every morning or go to sleep in the same bed every night. If you're like me, you can easily rattle off the names of people who have had a profound impact on your life, and yet for half of them, you can't remember the last time you saw each other or even talked on the phone. If you're anything like me in this regard, I hope you'll make this one promise to yourself and the special people in your life, either past or present: call them. Send them a letter or a card. Show up on their doorstep. Schedule time to catch up. And though it's awfully convenient, Facebook doesn't count. I take the easy way out sometimes, too. But it just isn't the same.

I haven't tried hard enough with Dzidra or anyone else for that matter - other teachers; my grandparents; parents; friends; cousins I suddenly stopped treating like cousins when the marriage broke up; my sister, whose beautiful life slips away more and more with each passing year. I care so much about all of them, but then I get busy and tell myself that tomorrow's another day. It took a series of tragic events in my life over the past four years - each and every one of which deeply affects someone I love - to understand this, and still I forget. But then I come across an old photo, or the phone rings, and I remember.

Friday, October 1, 2010

Angels Swoop Down

Just when I begin to wonder whether I have enough strength to continue, angels swoop down out of the clouds and save me.

Thank you for renewing my faith in miracles. You know who you are.

That's all.