Building Our Life Together

Loving a man with hydrocephalus.

By Gayle Kricke
Guest Blogger

“Dan’s going to need a strong woman. Are you a strong woman?” I’ll never forget what Dan’s mother asked me as we sat across from each other in the hospital Au Bon Pain, picking at our dinners while Dan underwent an emergency shunt revision.

The question was startling, but I figured she knew firsthand the strength it takes to raise a child with hydrocephalus. That was not her first late night hospital dinner or anywhere near her first experience waiting for the surgeon to pronounce the procedure a success. I, on the other hand, was just facing my introduction to hydrocephalus, having only dated Dan for a few months at the time. I liked to think I was strong, but as Dan’s mom asked the question, I couldn’t help but wonder if I was strong enough.

Dan told me he had hydrocephalus on our first date. He said it casually, like he was telling me the sky was blue or the day was Wednesday. I had many questions, so I naturally consulted the Internet once I got home from the date. A quick Google search led me to dark, scary places until I found trustworthy resources, like the Hydrocephalus Association.

With facts and terms swirling about my head, I knew I had to ask Dan directly about his experience. “Well, I figure I could have been a genius, but instead I’m just really, really smart.” That’s what Dan told me in what I’ve come to recognize as his signature wit, “And I guess I’ll never be a pro football star.” His response reassured me, and I decided that if hydrocephalus didn’t seem to bother Dan, I wouldn’t let it bother me, either.

But then, a few months later, I encountered the reality of loving a man with hydrocephalus when Dan needed two brain surgeries in rapid succession. Despite working in a hospital as a social worker, I found myself out of my element when I was there as a caregiver. The first surgery was a quick shunt revision followed by discharge the next day. The second was an endoscopic third ventriculostomy that occurred in the middle of a week spent in neurointensive care. Throughout the experience, I found myself taken by Dan’s ability to immediately put anyone at ease, whether it was making the nurses laugh as they prepped him for surgery or discussing television with the medical residents who popped in to check on him. I recognized that Dan’s humor and calm demeanor were among the hard-won coping mechanisms that every family experiencing hydrocephalus builds across a lifetime of doctor visits and hospital stays.

In the time we’ve been together, I’ve witnessed the effort it takes Dan to make hydrocephalus look effortless. I’ve seen the concern that accompanies deciphering between a headache and The Headache. I’ve sat next to him on the couch on days when weather changes make him tired. But I’ve also seen how Dan doesn’t let hydrocephalus slow him down or keep him from having a full, happy life. I’ve seen Dan’s unrelenting optimism, positive outlook, and infectious good spirit.

Together we are building a life that Dan’s mother may not have expected he’d get when he was born. We celebrated our wedding and went on a honeymoon to Hawaii. We travel and see friends and family and make plans. While we know there are likely to be more surgeries in our future, we also know there will be love, humor, and hope.

Now, I recall a conversation I had with my own mother after Dan’s ETV surgery: “Gayle, if you knew how things would play out when you met, that Dan would need surgeries and you’d be spending nights sleeping at the hospital, would you have decided to date him?” The answer is an unquestionable, “Yes.” Because without the surgeries and nights in the hospital, I wouldn’t have the best thing in my life: Dan.