La Grange woman testifies before Congress
Updated: April 29, 2013 2:17AM
LA GRANGE — I first met Deb and Carl at a block party.
I noticed right away how obviously in love they were, which wasn’t surprising, since they were newlyweds.
In the ensuing few years, every time I saw them, whether walking their dogs or getting their morning Starbucks, I was struck by their closeness: one of those couples that just go together, like peas and carrots or sand and surf.
I’ll let Deb pick up the story. It’s her and Carl’s story, after all.
“Carl and I met in 2005. We worked for the same company. I immediately was asking people, ‘Who is that guy who’s always dressed impeccably and has the best hair ever?’ We quickly got to know each other and he asked me out,” recalls Deb.
Their connection was immediate. They wed in 2007 and bought a home in La Grange, a town Deb always found charming.
“We had a fun two years, hosting parties, decorating, experiencing home ownership. In January 2009, we went to a Super Bowl party and Carl fell on the ice coming in from outside. I remember the fall, it was such a hard fall,” she remembers.
He had a bump afterward, and they didn’t think much of it. Until it didn’t go away. Months later, he had a CAT scan after a routine physical, because his doctor didn’t like the look of the bump. Carl was diagnosed with a rare form of cancer called desmoplastic small-round-cell tumor, or DSRCT.
The next three years were a blur of research and treatment at the top-ranked hospital for Carl’s form of cancer, M.D. Anderson in Texas. He was briefly deemed cancer free after a successful surgery, but the beast returned.
Carl passed away in August, not long after the couple traveled to one of their favorite places, Saugatuck, Mich. He deteriorated quickly in just few weeks, once the cancer spread to his liver.
I was in Michigan myself when I found out about Carl’s passing. I was thinking about him and Deb one evening at the beach, when I looked up at the sky, smudged pink and orange, and saw two seagulls flying together. One broke off and turned out over the lake, while the other kept gliding along the shore.
This week is Rare Disease Week and Deb is in Washington, D.C., testifying before Congress about DSCRT through Rare Disease Legislative Advocates and the Fight Sarcoma Group. She will share their story to encourage more research to combat such rare diseases. Since August, Deb has also worked to raise funds in Carl’s name for the CHRISTUS Stehlin Foundation for Cancer Research in Houston (http://stehlin.org).
“I used to roll my eyes when people said they were soulmates. Then I met Carl and I’m here to tell you we were soulmates,” says Deb. “It was the, can’t-eat, can’t-sleep, reach-for-the-stars, over-the-fence, World Series kind of love.”
It may be Rare Disease Week, but when I think of Deb and Carl, I think more about how rare their love is. I don’t say “was” because, well, I don’t think that’s quite right.
Like sand and surf, it will always be connected, meeting at the shoreline.