Because I have no washing machine, I visit the laundromat thirty miles away. I have a choice of three, actually, but the one in Cut Bank (by the far the nicest) has attracted a guy who stalks me -- he’s a psychotic ex-schoolteacher who aggressively proselytizes his version of Christianity. His father is rich, so the people of Cut Bank cut him a LOT of slack. Too much, in my opinion. Conrad’s laundromat is old and worn. So is Shelby’s, but they have the most machines and a public bathroom. Since I’m more likely to have other errands in Shelby, that’s where I usually go.
In all of these laundromats I meet interesting people, because this is the Montana High-Line, a place where people pushed or pushing out to the edge come to make a stand. Once in Shelby I had a nice conversation with an enormous black man, complete with dreadlocks, who had wanted to start a bakery in town but was blocked by the mayor. Sometimes it’s people I know from long time ago in Browning. In summer there are likely to be tourists.
This time it was a rather slender, neatly bearded man with glasses. We exchanged pleasantries about the weather, since we’ve just returned to “normal” of about thirty degrees (dry roads) after a bubble of way-below-zero temps. Then we talked a bit about politics, making bitter jokes, and suddenly it occurred to me that we were sounding more like people in a West Coast laundromat than High-Line survivors. Sure enough, it turned out that this man (I never did get his name) had mostly lived in California but came back here to one of the tiny dwindling oil patch towns to take care of his mother in her final illness. She’s gone now.
He had made a good living in the wholesale food supply business in the San Francisco area, but found that everything was changing quickly and drastically -- mostly a matter of little guys being squeezed out by big guys who then set the terms of transactions to suit themselves. That is, for their own profit. We agreed that big money and evasion of regulation has made food dangerous, politically hot, and potentially devastating to the country.
We talked a bit about drug culture and he said he’d been quite a back packer “before this” and was willing to tolerate the pot growers (many of them alienated Vietnam veterans) except that they set booby traps along paths, things like fish hooks on monofilament hung at eye level. He had been to college, earned an AA degree, had been a reader “until now.” He’d recently lost a lot of weight.
I had noticed that he was wearing new but inexpensive clothing, probably from Pamida in Shelby. Heavy flannel shirt, sweat pants, padded jacket. (Mine differs only by being old.) We talked about the high cost of heating and the risk of having an all-electric house in a place where the electricity is often shut down by storms. I asked if he had gas, which I do. He did not. Did he have wood heat as a backup? He did, but the scrap wood in his yard -- plentiful -- he was not able to gather and cut up.
Then there was a pause while I digested this. And he said, “I have an incurable fatal disease. In fact, I was only diagnosed for sure this week.” What was it? Lou Gehrig’s Disease. Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually lead to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. (This description is from the ALS organization.)
So I swung into my social worker/minister mode and asked him about his plans now. We talked dispassionately, exploring options and comparing notes. He said it was too soon to make decisions since he still hadn’t really digested what was likely to happen. He showed me that his left arm and hand were curling, resistant, and said that the doctor (whom he likes, a neurologist who flies over from Kalispell) told him he was lucky that the first symptoms were there, since people who have it beginning in the neck and jaw are in major trouble much sooner.
He said that his girl friend back in San Francisco had offered to “take him in” and help him to the end, but he said, “She doesn’t know what she’s saying.” He will need professional help and equipment. He probably has about three to five years left. He’s 54, has no children, but lives near his brother and the brother’s family. He said he was grateful not to have had children because that means he doesn’t have to worry about them having those genes and because he really doesn’t have a much more optimistic view of society and the planet than he does for his own future. But actually, ALS is NOT hereditary in 90% of cases. It is MORE prevalent and faster than MS.
Money is important. Now that he has a diagnosis, he will qualify for help. Because he had no insurance, he has been paying for his own tests, thousands of dollars at a time, . He’s using up his retirement, but he won’t need it anyway now. The worst test was the MRI, which he took right there in Shelby, and though the technician was skillful and the nurses were kind, it was just hard to lie there in a machine for more than a half-hour, immobilized and told not to swallow. I assured him that there WERE resources to help him and that people around here would take good care of him. They know his relatives.
He didn’t cry. He didn’t ask if he could call me. We didn’t exchange phone numbers or email. When I began to pack my clean dry clothes out to the pickiup, he said he’d really enjoyed the conversation and I agreed. He said, “I hope we meet again.” I said, “Could happen!” He echoed, “Could happen.” He knows enough about me to find me, esp. now with publicity over “Bronze I&O” about to start and since I once worked at Marias Care Center.
Some scientists are saying we are now entering a new geological age: the Anthropocene, the era in which humans, their chemicals, their erosions, their pollutions began to change continents, ice-caps and ocean currents, to say nothing of weather patterns or species evolution. There is no doubt in my mind that this man’s ALS and my own Diabetes 2 are part of this evolution, that we are being extinguished as surely as dinosaurs. As individuals. We didn't have children anyway. Out there somewhere are the progenitors of the birds that dinos evolved into and the mammals who blossomed next. But they had a lot more time than we do.
This man said that as soon as he heard his diagnosis, he thought of the Gary Cooper movie in which Cooper played Gehrig. He said that both Cooper in the movie and Gehrig in real life, "died well" with courage and honesty. He said that was his goal now. I have no doubt that he will achieve it.
Wow. Although nothing has been developed to slow down the progression of ALS, there are now many items to enable a person to remain active during the course of the illness. From special chairs and beds, to communication devices that allow someone 'locked in' with ALS to communicate or access a computer with even minor muscle movements - or even just eye movements. There are excellent companies that support this such as Dynavox and Eye Tech/QuickGlance. It is best to plan early for the coming needs. A doctor and speech language pathologist can help obtain and give guidance as to the appropriate items to allow a person with ALS to live a full life throughout the entire course of the illness. Best of luck.
ReplyDeleteI'm left with "oh my." My favorite college teacher died of ALS, and I think of his talent and appreciate him every day. Glad you met up with this man. Perhaps you will meet again.
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