by Janis Ian

I have been watching my mother die by inches for so long that sometimes I think the world is comprised of marks on a yardstick.
Here is the mark where she first felt a tingling & numbness that marked the end of feeling in her fingers and toes. Here is the diagnosis of multiple sclerosis ten years and twenty doctors later.
Here is the mark where she refused to hold her first grandchild lest she drop him. Here is our last piece of sushi together, before the gruel that now makes her gag because the muscles of her throat are deteriorating.
Here is the day she called me to demand $5,000 in small bills “immediately” because the bed was leaking green phosphorescence & had to be replaced.
Here are her last steps.
Here is her final descent into a wheelchair.
And here is the mark where I finally stopped demanding she be herself, and began instead to love the stranger she’d become.
This is my mother, who marched in the streets against Hitler & Viet Nam, and who taught me that for every Fourth of July firework, there is a mushroom cloud called Hiroshima lurking in the background.
Here is the year we didn’t speak, too angry at each other to even attempt détente… and here is where we both decided there was more to us than mismatched opinions.
Here are the things I gave her – backstage late at night in the jazz clubs, funding to go back to school, season tickets for the opera.
And here are my own regrets – why didn’t I take her to Japan, why couldn’t I haul her chair around Macy’s one last time, why can I walk when she can’t.
I cling to the good I did, and agonize over the rest.
Here is the file where I keep what is left of her former self. Here is the will specifying what is left to each of us “so there’ll be no fighting”. Here is the living will I insisted she make, naming me medical executor and spelling out her fears. Here is my twelve-year-old’s memory of her saying “I would rather die than be disfigured,” and my own incomprehension – You would rather die than lose a breast? and her resolute “Yes! It’s my body, my choice.”
Here is the mark of my brother’s call last month; she’s in the hospital with some kind of fever, are massive antibiotics a heroic measure? Can we put her on a respirator? Does she care any more?
They always said I resembled my father – eyes, nose, hair – but as I watched my mother being washed one day, I suddenly realized that regardless of any cosmetics I’d inherited from him, my naked body was entirely hers. Flesh of my flesh, bone of my bone, the very shape of my hips belongs to her genes. Later that day I napped, and took comfort in the scent still coming from her sheets, the same smell as my childhood, bringing memories of safety & joy.
My mother has been dying so long that it’s become easy to forget how much I miss her, to accept the daily frustrations as part of life. instead of ridiculous complications in a life already cut short. Here is a mark for the government man who arrives each year to verify that she hasn’t been miraculously cured, isn’t just too lazy to work & cheating Medicare. Here is the day her weight dropped to 69 pounds and they still wouldn’t pay for Ensure. Here is the aide my mother insisted was drunk all the time, and the mark of Cain on my forehead for believing the nurse, who said my mother exaggerated.
Here is where the aide finally passed out on the floor, then assaulted the police who came to remove her. Here is the system that assumed my mother’s handicap had also made her stupid, years before the disease affected her brain.
And here, clearly marked, is the day she herself realized that it had affected her brain, that all backfire sounded like gunshots now, and even the children’s laughter made her think of Auschwitz. Here is Valium, here is Prozac, here is everything we’ve tried to keep the door between what-is and what-is-feared closed.
And here is the stuff of my nightmares: she is assaulted as she lays helpless on the bed, strangers playing with her private parts while she, fearing worse punishments to come, dares not tell me.
Here is a mark where the most recent of my former friends said “I know I should visit, but I’ve had a rough couple of years, and it upsets me too much to see her like this.” Here are my memories of him sitting at our dinner table every week, eating my mother’s food, asking my mother’s advice. Here is my own impotent anger at a world where people care more for their own comfort than another’s solace.
I visit when I can, I play the clown, and she laughs as I describe my life and the world outside. We watch television together in silence; I make no demands on her other than that she eat. My mother, who ran funding drives for entire universities and obtained a master’s in playwriting at 50, is content to live in a state of Zen-like simplicity, where all answers are reduced to Yes or No, and Maybe is two letters too long for comfort.
And I am grateful for what we have, for the two aides who care for her round-the-clock, forcing her out of bed each day when she cries to stay lying down, insisting she tell them the day & month, forcing her to interact with a world that’s turned its back, massaging arms that barely feel & legs that spasm and flail in some rude dance when the drugs aren’t enough.
We are lucky, I tell my brother, she can still speak a little, she can see, she can hear. Do you think I should smother her, I ask, she trusted me to make sure she wouldn’t suffer, do you think we are really lucky?
Here is the mark where I began to dream of her, the same one I always have now. In it she is walking toward me, over a field of green filled with chaotic wildflowers that embrace and enfold her as she moves. She is rushing to greet me, arms outstretched, legs whole. She feels every motion of the wind against her skin, and as I fall into her arms I am home, and I am safe again at last.

(You are welcome to share this article; copies can be found here:http://www.janisian.com/reading/mothersday.php . Also, please visit the Pearl Foundation: www.thepearlfoundation.org for more information about scholarships!)

Happy Birthday Izzy.


My one Egret on 18 April 2016 on the :Lagoon.

Last night I wrestled with the Great Daemon and won. Well, me and God won.  It were a long night and a very big bottle of pills and for the first time in 28 years and 8 months, I wanted to take them all and cease to exist.

AND I DID NOT and today they were disposed of and instead I lived and loved with my Girls and my Addicts and my Friends and Izzy’s Spirit.

LAST NIGHT I STOOD AT THE TURNING POINT – hasn’t happened that way to me ever before – not since 1987. And HERE I AM ! Still in Danger Zone but not dancing with the Devil tonight.


This is the best description of the cause of relapse we have ever read.The following was published in the A.A. Grapevine, January 1947. Dr. Silkworth contributed the two letters included in “The Doctor’s Opinion” in the Big Book.

By William D.”Silky” Silkworth, M.D.

The mystery of slips is not so deep as it may appear. While it does seem odd that an alcoholic, who has restored himself to a dignified place among his fellowmen and continues dry for years, should suddenly throw all his happiness overboard and find himself again in mortal peril of drowning in liquor, often the reason is simple.

People are inclined to say, “There is something peculiar about alcoholics. They seem to be well, yet at any moment they may turn back to their old ways. You can never be sure.”

This is largely twaddle. The alcoholic is a sick person. Under the technique of Alcoholics Anonymous he gets well—that is to say, his disease is arrested. There is nothing unpredictable about him any more than there is anything weird about a person who has arrested diabetes.

Let’s get it clear, once and for all, that alcoholics are human beings. Then we can safeguard ourselves intelligently against most slips.

In both professional and lay circles, there is a tendency to label everything that an alcoholic may do as “alcoholic behavior.” The truth is, it is simple human nature.

It is very wrong to consider any of the personality traits observed in liquor addicts as peculiar to the alcoholic. Emotional and mental quirks are classified as symptoms of alcoholism merely because alcoholics have them, yet those same quirks can be found among non-alcoholics too.Actually they are symptoms of mankind!

Of course, the alcoholic himself tends to think of himself as different, somebody special, with unique tendencies and reactions. Many psychiatrists, doctors, and therapists carry the same idea to extremes in their analyses and treatment of alcoholics.

Sometimes they make a complicated mystery of a condition that is found in all human beings, whether they drink whiskey or buttermilk.

To be sure, alcoholism, like every other disease, does manifest itself in some unique ways. It does have a number of baffling peculiarities that differ from those of all other diseases.

At the same time, any of the symptoms and much of the behavior of alcoholism are closely paralleled and even duplicated in other diseases.

The slip is a relapse! It is a relapse that occurs after the alcoholic has stopped drinking and started on the A.A. program of recovery. Slips usually occur in the early states of the alcoholic’s A.A. indoctrination, before he has had time to learn enough of the A.A. techniques and A.A. philosophy to give him a solid footing. But slips may also occur after an alcoholic has been a member of A.A. for many months or even several years, and it is in this kind, above all, that often finds a marked similarity between the alcoholic’s behavior and that of “normal” victims of other diseases.

No one is startled by the fact that relapses are not uncommon among arrested tubercular patients. But here is a startling fact—the cause is often the same as the cause that leads to slips for the alcoholic.

It happens this way: When a tubercular patient recovers sufficiently to be released from the sanitarium, the doctor gives him careful instructions for the way he is to live when he gets home. He must drink plenty of milk. He must refrain from smoking. He must obey other stringent rules.

For the first several months, perhaps for several years, the patient follows directions. But as his strength increases and he feels fully recovered, he becomes slack. There may come the night when he decides he can stay up until ten o’clock. When he does this, nothing untoward happens. Soon he is disregarding the directions given him when he left the sanitarium. Eventually he has a relapse.

The same tragedy can be found in cardiac cases. After the heart attack, the patient is put on a strict rests schedule. Frightened, he naturally follows directions obediently for a long time. He, too, goes to bed early, avoids exercise such as walking upstairs, quits smoking, and leads a Spartan life. Eventually, though there comes a day, after he has been feeling good for months or several years, when he feels he has regained his strength, and has also recovered from his fright. If the elevator is out of repair one day, he walks up the three flights of stairs. Or he decides to go to a party—or do just a little smoking—or take a cocktail or two. If no serious after effects follow the first departure from the rigorous schedule prescribed, he may try it again, until he suffers a relapse.

In both cardiac and tubercular cases, wrong thinking preceded the acts that led to the relapses. The patient in each case rationalized himself out of a sense of his own perilous reality. He deliberately turned away from his knowledge of the fact that he had been the victim of a serious disease. He grew overconfident. He decided he didn’t have to follow directions.

Now that is precisely what happens with the alcoholic—the arrested alcoholic, or the alcoholic in A.A. who has a slip. Obviously, he decides to take a drink again some time before he actually takes it. He starts thinking wrong before he actually embarks on the course that leads to a slip.

There is no reason to charge the slip to alcoholic behavior or a second heart attack to cardiac behavior. The alcoholic slip is not a symptom of a psychotic condition. There’s nothing screwy about it at all.
The patient simply didn’t follow directions!

For the alcoholic, A.A. offers the directions. A vital factor, or ingredient of the preventive, especially for the alcoholic, is sustained emotion. The alcoholic who learns some of the techniques or the mechanics of A.A. but misses the philosophy or the spirit may get tired of following directions—not because he is alcoholic, but because he is human.

Rules and regulations irk almost anyone, because they are restraining, prohibitive, and negative. The philosophy of A.A. however, is positive and provides ample sustained emotion—a sustained desire to follow directions voluntarily.

In any event, the psychology of the alcoholic is not as different as some people try to make it. The disease has certain physical differences, yes, and the alcoholic has problems peculiar to him, perhaps, in that he has been put on the defensive and consequently has developed frustrations. But in many instances, there is no more reason to be talking about “the alcoholic mind” than there is to try to describe something called the “cardiac mind” or the “TB mind.”

I think we’ll help the alcoholic more if we can first recognize that he is primarily a human being—afflicted with human nature.

Cry, Heart, But Never Break: A Remarkable Illustrated Meditation on Loss and Life – Brain Pickings

“Who would enjoy the sun if it never rained? Who would yearn for the day if there were no night?”BY MARIA POPOVA

“Each day, we wake slightly altered, and the person we were yesterday is dead,” John Updike wrote, “so why … be afraid of death, when death comes all the time?” Half a millennium earlier, Montaigne posed the same question somewhat differently in his magnificent meditation on death and the art of living: “To lament that we shall not be alive a hundred years hence, is the same folly as to be sorry we were not alive a hundred years ago.”Yet mortality continues to petrify us — our own, and perhaps even more so that of our loved ones. And if the adult consciousness is so thoroughly unsettled by the notion of death, despite intellectually recognizing it as a necessary and inevitable part of life, how is the child consciousness to settle into comprehension and comfort?Now comes a fine addition to the most intelligent and imaginative children’s books about making sense of death — the crowning jewel of them all, even, and not only because it bears what might be the most beautiful children’s book title ever conceived: Cry, Heart, But Never Break (public library) by beloved Danish children’s book author Glenn Ringtved and illustrator Charlotte Pardi, translated into English by Robert Moulthrop.Although Ringtved is celebrated for his humorous and mischievous stories, this contemplative tale sprang from the depths of his own experience — when his mother was dying and he struggled to explain what was happening to his young children, she offered some words of comfort: “Cry, Heart, but never break.” It was the grandmother’s way of assuring the children that the profound sadness of loss is to be allowed rather than resisted, then folded into the wholeness of life, which continues to unfold. (I’m reminded of Maria Kalman’s unforgettable words: “When Tibor died, the world came to an end. And the world did not come to an end. That is something you learn.”)

Source: Cry, Heart, But Never Break: A Remarkable Illustrated Meditation on Loss and Life – Brain Pickings

Liver Cancer Found in Hepatitis C Patients on New Antivirals



BARCELONA, Spain — In a surprising number of patients with hepatitis C and cirrhosis, hepatocellular carcinoma develops within weeks of starting treatment with direct-acting antivirals, new research suggests.”I do not think that direct-acting antivirals are directly responsible,” said lead investigator Stefano Brillanti, MD, from the University of Bologna, Italy.”The hypothesis is that immune surveillance may be reduced too rapidly,” he told Medscape Medical News. “You have an immediate drop in viremia, but also attenuation of inflammation. I think inflammation is a bad thing in terms of hepatitis progression, but it may be a good thing in terms of controlling cancer.”

Source: Liver Cancer Found in Hepatitis C Patients on New Antivirals