When I wrote fondly last week about my joy at playing house, did I mention that it sits on a volcano? Like all volcanoes, this one troubles and frightens in various ways, but not all the time, and not in any pattern. Maybe it’s more like living near several volcanoes, each with its own separate pattern. You might have seen one of those documentaries about the various Iceland volcanoes. One blows straight up in the air, one kind of seeps, another threatens to spew forth enough heat to bury the nearby towns and farms with mud from rapid melting of its usually beautiful glacier. Each of those unpronounceable names has particular characteristics, each of which signals a clear and separate scenario to volcanologists.
The name of our volcano is Huntington’s Disease. It lives in my wife like a parasite, often resting, but always on the lookout for some way to kidnap her body and turn it against us. When we married, I told the minister to announce that our marriage has three participants, because she fights the disease with as much detachment as I do. It has not become her new being, even though it changes her shapes and talents in irreversible ways.
Three weekends ago, as I dug out one of the tougher tree roots, my mind flashed an image — as it does in so many stray moments — of the flash-fried corpses discovered so recently at Herculaneum, at the foot of Mt. Vesuvius. When the lava engulfed them, it perfectly preserved the poses in which they sought comfort. If a shout should come from my open living room window, and I arrived too late to forestall the fall, the choking incident, whatever it would be that would cut short her life, my tree stump would be like one of those Herculaneum bodies: caught mid-task for ages to come.|
Other times, the volcano that looms is Kilauea, the constantly oozing lava that slowly crunches over Hawaii’s trees and roads and houses. My wife just slows down, does less. Fighting the disease is so constant, and although it takes over the brain, it controls the entire body. After a long, ambitious day, she’s likely to spend the next one looking as if she were walking under water. Maybe only sleeping.
But the one that scares me the most is Mt. Pinatubo. Perhaps you remember those films from the Philippines, no more than about twenty years ago. There were warning signals and evacuations, saving thousands of lives. But then, when the mountain erupted, spewing ash into a tropical rainstorm that would have been a disaster all on its own, mud spattered down everywhere. Lahars — lava-mixed mud — rolled down in large rivers, while lava-mixed rain coated the countryside as if in some overdone theatrical: whiteface on the people, the cattle, the pets, the cars and trucks and squalid little bags that held their lives.
What will our lahar-rain look like? Maybe she’ll swallow too much liquid into her lungs and be strangled by that vicious pneumonia. Maybe she’ll fall and suffer one of the major disabilities that beset us women of sixty and over. If these things happen, she will still be my wife, but our cute little home will be shattered. My caregiving-based funding will end when she enters the hospital or residential care. My ties to the community are tenuous, because I spend so much time at home, but residential care or hospitalization will completely uproot me. I’ll look like one of those tree stumps whose roots lie cut around them.
Huntington’s Disease has no cure, and after all the excitement about finding its genetic marker, the subsequent decade has revealed that the gene requires activators the doctors don’t understand. There are some correlative factors that seem important, but no one knows why. My wife is the youngest — one of the risk factors — and her father was somewhat older when she was born — which is now factoring into several neurological syndromes. On the other hand, it appears that in her family the activators have delayed the onset of symptoms past the point they would have been predicted by just the genetic marker.
Maybe you don’t care about this, because no one in your family has this disease. But it’s the only hereditary member of a cluster that might well rumble into your life — Parkinson’s, Alzheimer’s, maybe even ALS or MS. More and more, our research communities are cross-fertilizing each other. Yes, ALS is still the worst, and fully deserving of all that ice-bucket money you might have heard about. But would you spare a thought for us, living here in this cluster of volcanoes, and donate for research into Huntington’s Disease? We need brain scans to identify the sectors of each HD brain as it wins and loses particular regional battles. My wife, for instance, has phenomenal intellectual capacity, but impulse control and anxiety attacks slice into our lives almost daily.
Next Saturday, September 27, 2014, our humble little Vermont chapter of the Huntington’s Disease Society of America, will walk to raise funds. Our chapter has expenses — a paid convener — and dreams, such as a local residential facility, so caregivers can maintain rooted lives when our loved ones are no longer at home. Please click on our website and make a donation:
And thank you.