Tuesday, June 21, 2011

Loss, Legacy and Faith

Eight years ago today, my father, Michael William "Brother Mike" Gural, died. I wasn't by his side. I was here, sleeping after an overnight shift at the AP, because I had a horrible boss at the time. Of course I could have insisted on taking more FMLA leave, but I didn't. I will always regret that.

I think it gets harder every year. That pit in my stomach feels as deep as it did on that train ride home to Massachusetts. I weep as mournfully today as I did when I first saw him in a casket in the funeral home, and when the monks lowered it into the ground.

The loss is daunting and profound. Euripides said, "To a father growing old nothing is dearer than a daughter." My father never got to grow old. He worked and worked and then he was diagnosed with cancer. He suffered and then he died. What stings worse is that he never met his precious grandson.

The pain is incomparable. And that's compounded by my ongoing struggle with faith. I was raised in the Russian Orthodox faith, by a devout mother and her parents, who often hosted the hierarchs and other clergy at the homes where I grew up. We made frequent pilgrimages to churches and monaserteries across the Northeast, including the monastery where my father is buried alongside my maternal grandparents.

As Aldous Huxley said, "My father considered a walk among the mountains as the equivalent of churchgoing." We spent many hours on Wilbraham Mountain, a short hike from the cul-de-sac where I grew up and my mother still lives. In the early years, it was often Tex (our purebred German Shepard who had been trained as a state police dog), dad and me, and later my sister, too. As much as I love and seem to need the city to keep me sane, I do miss escaping in the mountain. Names are very important to Russian writers, and to me. (I will take any comparison I can fairly make!) My father's mother was Jadwiga Urbanski (city dweller), and his father was Wolodya Gural (mountaineer). I never met them, but in my heart I will always be a combination of the city woman and the mountain man.

In the end, my father chose to be buried by the Russian Orthodox Church. My mother asked him many times (I heard several) if he was sure, as she didn't want him to compromise his principles or make a mockery of her faith. My father went to church on major holy days and was respectful to my mother's cleric friends. He was a spiritual man, but he believed faith was practiced within oneself, not necessarily within a house of worship. Like Henry David Thoreau said, "Heaven is under our feet as well as over our heads." But in the end, my father insisted he wanted to be buried alongside my mother (they will share a towering grave marker in the shape of an Orthodox cross), and that he would make the required preparations through prayer and confession. Homer said, "All men have need of the gods." I question how those needs change as we get sick and grow old, and what that means to the next generation.

Like Khalil Gibran, my father respected men of all faiths. "I love you when you bow in your mosque, kneel in your temple, pray in your church. For you and I are sons of one religion, and it is the spirit," said Gibran. It's still hard for me to reconcile that, in the end, my father chose to "pray in your church."

It's easy to use science to dismiss religion. It's much harder to use philosophy. In his last days, my father returned to many of his "life texts," re-reading them in what I think was preparation for what lied ahead. I'm struggling to figure out where my faith fits into his final decisions.

"I would rather live my life as if there is a God and die to find out there isn't, than live my life as if there isn't and die to find out there is."
_ Albert Camus

Sunday, June 5, 2011

Blinded by Science? The Odds Narrow

Michael Alexander is suffering from his fourth ear infection in as many months. Mike and I have become pros at diagnosing these, and I knew the pediatrician would prescribe yet another round of tummy-torturing antibiotics this morning. Our normally happy son was inconsolable last night and cried nonstop from midnight until shortly after 4 a.m. His temperature spiked above 104 yesterday, the first sign that the evil infection had returned with a vengeance.

About one in five children with a cold or other respiratory viral infection develops a middle ear infection (acute otitis media) that may range from mild to severe, according to a study published in the February issue of The Pediatric Infectious Disease Journal. Michael Alexander was hit with the first one following a viral infection. When he returned to her office a month later with another ear infection, his pediatrician warned that this could likely become a chronic problem.

According to the study by Dr. Stella U. Kalu and her University of Texas Medical Branch at Galveston colleagues, just 7 percent of the 294 children children ages 6 months to 3 years had inflammation of the eardrum without fluid in the middle ear. In Michael Alexander's case, that fluid is causing hearing loss in both ears. Neither of his eardrums is vibrating at all due to the amount of fluid, said the otolaryngologist, or ear, nose, and throat (ENT) doctor, he saw last week. Among the children studied by Kalu's team, eardrum inflammation was rated mild in 8 percent, moderate in 59 percent and severe in 35 percent. Michael Alexander's infection has been severe in both ears all four times. And now he's got a sinus infection.

The Galveston study said that children with the infection were treated without antibiotics whenever possible. Michael Alexander's case has been so severe, that he's been treated with antibiotics every time. During his last bout we learned he's allergic to Cefdinir, an antibiotic used to treat ear infections, when he broke out in hives on a Sunday afternoon. Now Michael Alexander is a candidate for a tympanostomy, a surgical procedure which involves the insertion of tubes to allow fluid to drain from the middle ear. Mike, who suffered from chronic ear infections as a child, had "the tubes." (Mike also had his adenoids removed, and jokes that's how I could tell him apart from an alien replicant. I explain in the next paragraph why this is no longer a course of action.) A tympanostomy requires a general anesthetic and children typically recover completely within a few hours. The surgeon makes a small incision in the eardrum -- a myringotomy or removal of fluid -- and then inserts a tube to allow continuous drainage of the fluid from the middle ear.

A tympanostomy isn't recommended until a child suffers from four ear infections in six months, but the ongoing treatment with antibiotics in the meantime may not be the best route. I haven't resisted the antibiotics for Michael Alexander because I know it works quickly (save for the allergy) and eases his excruciating pain. A paper in the April Journal of Clinical Microbiology found that in most children with chronic otitis media, biofilms laden with Haemophilus influenzae cling to the adenoids, while among a similar population suffering from obstructive sleep apnea, that pathogen is usually absent. Biofilms are resistant to antibiotics. Earlier clinical studies had suggested that adenoids might be reservoirs for middle ear pathogens, and a 1987 study had suggested that adenoidectomy was effective in treating children prone to middle ear infections. But in 2006, Luanne Hall-Stoodley of the Wellcome Trust Clinical Research Facility in Southhampton, England, found that in children undergoing installation of tympanostomy tubes for treatment of chronic otitis media, the culprit bacteria inhabited biofilms attached to the middle ear mucosa, along with other bacteria that cause ear infections. "We therefore wondered if these pathogens might also form biofilms on the adenoid surface," said Hall-Stoodley.

I'll spare you the nitty gritty science behind the Southhampton team's study, but it's important to note that new treatments are likely to be more effective. "I think that scientists have begun to think about chronic otitis media in a new way, and investigation of the pathogenesis of this complex disease will help in the design of novel therapies that do not depend on antibiotic treatment alone," said Hall-Stoodley. "Chronic middle ear infection can cause hearing impairment, which can affect verbal ability and education in children."

In March, the Centers for Disease Control announced that ear infection diagnoses had plunged by nearly 30 percent over the past 15 years. I wish my son wasn't bucking that trend. As the odds narrow, Mike and I are likely to consent to a tympanostomy when Michael Alexander returns to the ENT in three weeks. For now, I just hope this last dose of antibiotics dulls his pain. I can't bear his cries and my inability to console him. My ears are hurting, too, along with my throat. But it's the pain in my heart that's worse. I'm trying to be well-informed without reading too many articles on the risks and arguments against a tympanostomy. Odds are I'll be blinded by science.

"A science is any discipline in which the fool of this generation can go beyond the point reached by the genius of the last generation." _ Max Gluckman, South African-born British social anthropologist