Dear Friends,
I returned last week to the village where I had described in January the aftermath of a youth suicide. Here's an update.
The brother-in-law, whom I had described as depressed as a result of the suicide, died in March of metastatic lung cancer at age 50. His wife, Cheryl, who is a very astute village health aide, had said in January that he wasn't himself. He usually had dinner ready with a smile but instead she would come home after a busy day in clinic to find him lying in bed. After administering a Beck Depression Survey and interviewing him in January, I thought he was depressed. What I didn't know is that he had brain metastases from a rapidly lethal form of lung cancer. Even if I could have X-rayed his chest in the village, the tumor would not have shown. An MRI available only in Anchorage later showed the brain metastases that had begun to change his personality.
When I returned to Kotzebue in March I called Cheryl, who was back in the village, to express my sadness over her husband's diagnosis. He had returned from Anchorage to his home to die. The radiation to his head hadn't helped him much. His pain, she told me, was not well controlled, and she didn't know what to do. From my office and room in Kotzebue, I advised Cheryl by phone, ordering narcotic patches to help reduce his pain and restlessness. A small thing after missing the diagnosis, it helped me feel better about his dying. I remembered our conversation as we had waited for my plane to take me back to Kotzebue in January. She described him as far and away the best of her three husbands. That was before she knew he was terminally ill.
Now she was describing to me how he saw his dead mother. And angels. He kept telling them that he couldn't leave. He wasn't ready.
A week later he died. When I called just 12 hours afterwards, she described his final minutes. He said he had to go and he was going to miss her. He looked across the room and called out "Mom!" and then he stopped breathing. In the background I could hear her grandchildren laughing and elders talking. The house was full, the family a bulwark through all the terrible things that have happened.
Unbelievably, Cheryl's mother, who was raising the foster son who committed suicide, has metastatic tonsillar cancer. A double whammy for this most wonderful woman. A husband, and now her mother.
In January I had seen her 72-year-old mother for a chronic earache. We spent at least 45 minutes together talking about her foster son's suicide, she wondering what she had done wrong and how could she have prevented it. He had blown his face off in the next bedroom while she slept. Since I couldn't see anything to explain her earache, I referred her to an ENT who visits Kotzebue every three months. But while visiting Cheryl's husband during his stay at the Native Hospital in Anchorage in February, she saw an ENT who found the cancer on endoscopic exam. Wow. I was taken aback. This meant that two of the 55 people I had seen in January had had terminal illnesses.
The May village visit is as busy as January's was, except I got a late start because it was too foggy to fly safely out of Kotzebue last Monday. I waited through the day to leave, grateful for the bush airline's conservative flying policy. Better late than never.
I see two children with cerebral palsy.
The first is a 15-year-old boy who looks 8. His semi-contracted withered limbs barely fill the pediatric-sized wheelchair. His mother tells me he is getting harder to lift. Dead weight. Although the state will pay for it, no one in this village of 500 people wants to be his personal care attendant a few hours a day to give his parents some relief. He has a very small head with eyes that tick horizontally. Nonverbal. Diapered. I ask the usual questions. I examine his childlike body, all systems on delay, delay. Not one sign of sexual development. Passively he permits my probing.
Luckily there are four healthy children at home. But I feel powerless to help this boy and his family.
The second child is 9 and much bigger, more functional -- enough to be rambunctious. He turns away as I examine his ears. He pulls at his white (foster) mother who looks to be about 60. She tries to keep him from jerking her too hard. He hugs and kisses her repeatedly. She tells me in a disgusted tone how she took him out of school a couple of years ago because the teacher was no good.
They spend every summer in Anchorage where he has physical and speech therapy five days a week. He can even swim. We both lament the absence of swimming pools in the Bush. When Governor Sarah Palin sent out a questionnaire to parents of children with disabilities, this mother described all the things that were done badly. "Oh yes", she said, "I'll complain to get my son the best education and care." He can't talk -- yet. But he can use a walker to ambulate on even surfaces at home and school. Although the village's gravel roads prevent him from walking, he can often make his way by bike.
He has a cold, and she worries he'll get aspiration pneumonia again. I am able to reassure her that his lungs sound good. But I have difficulty understanding her enthusiasm, her commitment. Even though I know it's what a good mother does.
I think about John Cassevetes' movie, A Child is Waiting, made in 1963. Using children with disabilities like Down's syndrome and mental retardation and his signature naturalistic style of directing, his movie explored the problems of educating disabled children who had previously been hidden at home. Children were being placed in institutions for residential education. Judy Garland is the teacher who tries to point out the problem with removing children from their families.
Fortunately, now families are given the support to care for their children at home and receive educational services, too. I can't help but wonder as I examine these two boys whether the pendulum has gone too far in the other direction, especially in view of the limited resources we have for all kids.
I ponder the enormous need for mental health services here. A place that has the highest suicide rate in the country and where so many young people are dying. We've figured out how to systematically address the needs of the disabled. But mental health is a morass. The problems are often hidden or denied. Yet they are as plain as day here -- as manifested by hangings and overdoses and a hideous rate of traumatic injury and death while under the influence of alcohol and drugs.
After spending my days treating people with the usual chronic diseases -- diabetes, hypertension -- in comes the most amazing man. He walked 50 miles down the Noatak River from his log cabin in the wilderness to see me. He is 50 and, unlike many aging Inupiat, does not look the worse for wear. He hasn't had a drink or a woman in 20 years. He uses his dividend check to buy the essentials. He doesn't drive a snowmachine. He lives entirely off the land -- hunting caribou and small animals, fishing, digging up burdock (a spinach-like green) and picking berries -- cranberries, blueberries. When the mosquitos come he heads up into the nearby Brooks Range. They leave in mid-July after the rains and he comes back home. Then come the gnats and off he goes again. Unlike the caribou who amass to reduce the total surface area available to the voracious insects, he has to make a run for the mountains. He uses an REI whistle to keep the grizzlies away. The Good Book provides reading entertainment when he isn't whittling cutlery and implements in his spare time. Why anyone would live in town puzzles him.
His medical problem is one that may be hard to fix. But I don't want to tell him that on the first visit so I stall and tell him I'll review his medical records from the Native Hospital in Anchorage and consult a specialist if need be. But how will I find this man for our followup conversation?
I think to myself there is probably some significant reason why he's chosen to live his life far away from others. And despite outward appearances, he is suffering like the rest of us who are living more communally.
I feel a great weight in my heart as I read the most recent progress notes in several of the kids' charts. They are handwritten and signed by Dr. Golub, a 53-year-old pediatrician who was killed in Kotzebue last November while doing his quarterly field trip from the Native hospital in Anchorage.
When I returned to Kotzebue in January this year, my ER physician roommate had told me the gruesome story. After coming up to provide pediatric specialty care for the last 18 years, Dr. Golab had an opportunity to go dog mushing for the first time, with a woman who works as an occupational therapist in Kotzebue's elementary school. An experienced musher, she had always rode by dog sled from her home 20 miles away to work a week at a time at the school.
Three miles out of town on a bright star-studded night, a snowmachine going 90 miles an hour hit them. They flew into the air like Santa and his sleigh. When they landed, his leg was severed and her dominant arm was mangled useless. They pleaded with the man and the woman on the snow machine for one to stay while the other got help. Scared and high on alcohol and cocaine (according to the Anchorage newspaper) they started back to town -- on foot -- because their snowmachine wouldn't start.
She couldn't stop the flow of blood from his leg due to her own injuries. An hour later he died in the snow.
Despite a weakened aorta, she returned to the Bush from her home town in New York after five months of physical and medical therapy.
I read his progress notes from November 19, 2008, the day he died. Then I looked up at the mother of a chronically-ill child he had seen on the day he died. As we speak of him, I think I detect embarrassment in her face.
This was a sobering event in the community. A Native killed a white man who had done nothing but good for the people up here. The Natives don't talk about it. The white people are quietly angry. A feeling of hopelessness pervades the story. It reflects fleetingly on all the problems that the culture is experiencing -- a complex web that no one seems willing or able to tackle.
Today is the day before Memorial Day -- a brisk 30 degrees or so with a steady wind. The sun is shining as it orbits around the town. The Lions Club is out cutting the Arctic willows that clutter the mounds in the cemetery. The snowmachine path is so close to the graves that some of the wooden crosses that bear the names and dates of the dead have been knocked over. Surprisingly, it's not the cold over the past seven or or more decades that has done them in. The volunteers bring tools to patch the two pieces of wood back together again and stick them back in the ground.
I am sorry to miss May in Minnesota but I will glory in June soon enough. I wish you all well and do write if you have time.
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